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Patients’ Experiences of Care With or Without the Support of an Interactive App During Neoadjuvant Chemotherapy for Breast Cancer: Interview Study

Patients’ Experiences of Care With or Without the Support of an Interactive App During... Background: Neoadjuvant chemotherapy (NACT) is often recommended for patients with breast cancer with more aggressive tumor characteristics. As with all chemotherapies, they can cause substantially disturbing symptoms. Most patients receive their treatment as outpatients, which means that they must take responsibility for self-care and management of symptoms at home for a long period. Patients with breast cancer undergoing chemotherapy may not receive sufficient support for management of treatment-related symptoms. For patients undergoing NACT, it has been concluded that information and supportive needs are not always met. In our previous study, the use of mobile health to support patients with breast cancer undergoing NACT reduced symptoms during treatment with the support of an interactive app. Therefore, it is important to investigate how patients experience their care and explore any specific contribution that the app may have brought in care. Objective: This study aims to explore patients’ experiences of care with or without the support of an interactive app during NACT for breast cancer. Methods: This qualitative study was part of a larger randomized controlled trial and included 40 individual face-to-face interviews conducted with patients in both intervention and control groups after the end of NACT. The interviews were audio recorded, and the data were analyzed inductively using thematic analysis. Results: No major differences in experience of care were observed between the groups. A total of 4 overarching themes emerged. In the first theme, The health care context, patients described care as assessible, although sometimes there was a lack of time and continuity with nurses. In the second theme, Being a recipient of care, it emerged that the patients experienced a warm and positive atmosphere at the clinics. In the third theme, Taking an active role as a patient, patients described being active in searching for information and various ways of participation in their own care. In the fourth theme, The value of the app, patients who had used the app experienced it as a complementary source of information, creating a sense of security. Using the app provided patients with the support of being contacted by a nurse if needed, enabled self-care, and facilitated the planning of daily activities. Conclusions: Overall, patients’ experiences of care were similar and mostly positive. However, for patients using the app, it provided additional support for information and self-care and enhanced participation in their own care. The easy access to a nurse gave patients a sense of security. The findings suggest integrating an interactive app as a complement to standard care to support patients with breast cancer during treatment. International Registered Report Identifier (IRRID): RR2-DOI: 10.1186/s12885-017-3450-y (JMIR Nursing 2022;5(1):e39983) doi: 10.2196/39983 KEYWORDS breast cancer; neoadjuvant chemotherapy; experiences of care; mobile health; mHealth; mobile app; patient participation; mobile phone https://nursing.jmir.org/2022/1/e39983 JMIR Nursing 2022 | vol. 5 | iss. 1 | e39983 | p. 1 (page number not for citation purposes) XSL FO RenderX JMIR NURSING Fjell et al the intention of supporting patients in real time during cancer Introduction treatment regarding symptom management [28]. The patients showed high adherence and engagement in using the app, which Patients with breast cancer with more aggressive tumor promoted continuous contact with the nurse [29] and led to less characteristics are often treated using neoadjuvant chemotherapy symptom burden during treatment of prostate and pancreatic (NACT), which is administered before surgery [1,2]. The main cancer [30,31]. In a randomized controlled study using the purpose of NACT is to reduce the tumor size, known as Interaktor app during NACT, the results showed lower symptom downstaging. This may allow less extensive surgery on the prevalence and symptom distress and better emotional breast and axilla, thereby facilitating breast-conserving surgery functioning than the control group 2 weeks after the end of instead of mastectomy, as well as improve cosmetic outcomes treatment [32]. The next step in evaluating the use of the app and reduce postoperative complications such as lymphedema was to explore whether the app contributed to standard care in [3,4]. NACT also allows early treatment of possible any specific way. This study aimed to explore patients’ micrometastases and provides valuable prognostic information experiences of care with or without the support of an interactive regarding the effectiveness of treatment [1,5]. The treatment is app during NACT for breast cancer. considered both safe and effective [1,6-8]. However, as with all chemotherapies, it can cause substantial physical and Methods psychological symptoms [9,10]. In general, most patients with breast cancer receive treatment Study Design as outpatients, which means self-care and management of In this study, a qualitative design was applied to explore symptoms at home for a long period [11,12]. This means that patients’ experiences of care and the significance of using the patients are expected to participate in their own care, and this app. This study is part of a larger randomized controlled trial involves patient learning to obtain knowledge and skills to (RCT; ClinicalTrials.gov NCT02479607) evaluating the manage illness and symptoms in collaboration with the nurse Interaktor app in patients undergoing NACT for breast cancer [13]. It also includes a caring relationship between the nurse [28]. and patient built on reciprocity and trust [14]. However, it is Sample and Setting evident that patients have different needs concerning participation [15]. There are patients who are satisfied with not In the larger RCT, 149 patients diagnosed with breast cancer being so active but also those who express that they want to and treated with NACT were included in an intervention group participate in their own care, and for achieving that, there are (n=74, 49.7%), using the app Interaktor in combination with both facilitators and barriers [16,17]. Participation should be standard care, or a control group (n=75, 50.3%), only receiving considered on an individual basis, according to the patient’s standard care [32]. Inclusion criteria were as follows: aged ≥18 specific situation [18]. years, diagnosed with nonmetastatic breast cancer planned for NACT, able to read and understand Swedish, and no medical In contexts with short hospital stays and outpatient treatments, condition of cognitive dysfunction. The trial was conducted at patients need to actively engage in self-care, but they need 2 university hospital oncology clinics in Stockholm, Sweden. support in managing this condition [13,19]. Previous studies have shown that patients with breast cancer may not receive When agreeing to participate in the RCT, the patients were sufficient supportive care for treatment-related symptoms during informed by the researcher that they could later be contacted chemotherapy [20,21]. Studies regarding patients’ needs during and invited to participate in an interview study about their NACT are few, and they report that information and supportive experiences of care during NACT and the significance of the needs are not always met [22,23]. This may result in impaired app among patients who had used it during the study. Three well-being, reduced health-related quality of life, distressing months after the end of NACT, a consecutive sampling strategy visits to emergency departments, hospitalizations, and poor for the interviews was adopted in the first 20 patients, with an treatment outcomes [22,24]. Therefore, ensuring that the care equal number of patients from both the intervention and control needs are identified, assessed, and managed is imperative. groups at the 2 hospitals. Subsequently, a strategic sampling strategy was used to capture a range of patient characteristics Technical advances in the field of mobile apps and web-based based on group, age, marital status, educational level, systems have led to an increased use of mobile health (mHealth) occupation, and treatment duration in weeks. A final sample of to improve the delivery of health care and to support patients 40 patients from the intervention (n=21, 53%) and control (n=19, with cancer [25,26]. Studies on the use of such technology have 47%) groups was included in this study (Table 1). There were shown decreased symptom burden, improved health-related no statistically significant differences in the sociodemographic quality of life, and increased survival [26,27]. We developed and clinical characteristics at baseline between the 2 groups. an interactive app (Interaktor) for smartphones and tablets, with https://nursing.jmir.org/2022/1/e39983 JMIR Nursing 2022 | vol. 5 | iss. 1 | e39983 | p. 2 (page number not for citation purposes) XSL FO RenderX JMIR NURSING Fjell et al Table 1. Sociodemographic and clinical characteristics at baseline (N=40). Characteristic Intervention group (n=21) Control group (n=19) Age (years) at inclusion, mean (SD; range) 51.7 (12.5; 30-73) 54.2 (13.5; 35-77) Marital status, n (%) Married or cohabiting 17 (81) 14 (74) Living alone 4 (19) 5 (26) Education level, n (%) University 13 (62) 11 (58) Secondary school 3 (14) 6 (32) Primary school 5 (24) 2 (10) Occupation, n (%) Working 16 (76) 13 (68) On sick leave 2 (10) 1 (5) Retired or unemployed 3 (14) 5 (26) 15.3 (1.9; 11-20) 15.6 (2.5; 11-23) NACT duration in weeks, mean (SD; range) NACT: neoadjuvant chemotherapy. concern that sends alerts to a nurse at the clinic by an SMS text Standard Care message, and continuous access to evidence-based self-care Standard care consists of treatment and care according to advice and relevant websites related to assessed symptoms and national care guidelines, including visits to the physician at the other areas of concern. Moreover, the patients could monitor oncology clinic before each chemotherapy treatment, their own reported symptom history over time in graphs. When approximately every second or third week, depending on the alerted, the nurse calls the patient to discuss the symptoms and chemotherapy regimen. Moreover, the patient is assigned a their management. If an alert is triggered, a notification suggests contact nurse who has the overall responsibility for the patient that the patient reads the related self-care advice [34]. During throughout the care chain. The contact nurse provides the patient the RCT, the patients reported symptoms daily on weekdays (8 with information about the treatment and the planning of care AM-4 PM), starting on their first day of NACT and continuing during a scheduled visit before the start of treatment. During until 2 weeks after the end of NACT, approximately 18 weeks treatment, the contact nurse supports patients with information, in total. More details and illustrations of the app have previously establishes a care plan, assesses the patient’s symptoms and been presented [28]. needs, and takes actions based on these symptoms and needs. Data Collection In case of questions or concerns related to treatment, the contact nurse is available during office hours. During other hours, Data collection for this study was conducted between January patients are referred to the oncology emergency unit or inpatient 2016 and August 2017. The interviews were conducted by the or emergency department, depending on which hospital the first and third authors (MF and MN) and an additional patient is being treated at [33]. researcher. All interviews took place in a secluded room at the 2 oncology clinics 3 months after the end of NACT. A The Intervention With Interaktor for Patients With semistructured interview guide was used, covering different Breast Cancer During NACT aspects of patient participation such as the relationship between The content of Interaktor for NACT was developed through patients and nurses, patients’ information needs, self-care, and literature reviews, clinical guidelines, and discussions and caretaking [18,35]. In addition, the patients from the intervention consultations with health care professionals [32]. The app, group were asked about the significance of using the app during running on a smartphone or tablet, has several features: treatment. The patients were asked to speak as freely as possible self-reporting of 14 commonly prevalent symptoms during around each question, and depending on the extent of the chemotherapy, the transfer of the reported symptoms to a secure answers, follow-up questions were used (Textbox 1). The server, a web interface where a nurse can monitor the patient’s interviews were audio recorded and lasted between 14 and 61 reports in real time, a risk assessment model for symptoms of minutes, with a median duration of 27 minutes. https://nursing.jmir.org/2022/1/e39983 JMIR Nursing 2022 | vol. 5 | iss. 1 | e39983 | p. 3 (page number not for citation purposes) XSL FO RenderX JMIR NURSING Fjell et al Textbox 1. Interview guide. Question and follow-up questions: 1. How did you experience the contact (care relationship) between you and the nurse during the treatment period? How has it been? Give examples. Has it come about naturally or have you and/or your relatives been forced to bear the weight of your care? Give examples. Has the nurse considered your experiences/wishes about your care? Give examples. Did you get help when you needed it? Give examples. 2. Do you feel that you have received enough information regarding your care and treatment? Give examples. How has the information been provided (written, verbal, over the phone, or during visits)? When was the information given? Was the information provided in such a way that you understood and could absorb it? Give examples. Did you lack any information? Give examples. 3. How did you experience your encounters with the nurse? Were you given enough time with the nurse? Did you feel you were taken seriously/respected? Give examples. 4. Have you been involved in your care? Can you describe how you have been involved or not involved? 5. Was there a dialogue in your meetings with the nurse? Give examples. In what way have you had the opportunity to express how you wanted your care/treatment to be? Have you had the chance to ask questions or express concerns? Give examples. Has the nurse considered any of your experiences/wishes in the planning of your care? Give examples. 6. Have you received advice and help on how to treat symptoms or other concerns? Give examples. Did the nurse explain the cause of the symptoms? Give examples. Did the nurse explain how the symptoms should be managed? Give examples. How did you experience the information given by the nurse? Did the advice help? Give examples. Did you get help with other basic needs (eg, sick leave and counseling)? Give examples. 7. Is there anything you would like to change in health care? Give examples. 8. What significance did the app have for you during the treatment? (Note: this question concerns the intervention group.) What significance did the app have for your involvement in care? 9. Is there something you would like to add before we finish the interview? Give examples. Statements from the patients in agreement with the study Ethics Approval objective were systematically coded throughout the entire data This study was approved by the regional ethical review board set of each patient and transferred into a coding sheet. A code of Stockholm, Sweden (registration numbers 2013/1652-31/2 consisted of a few words or whole sentences. The codes from and 201712519-32). each group were then discussed by the 2 authors. As there were few differences in the codes concerning experiences of care Data Analysis between the 2 groups, the codes were merged into one coding The interviews were analyzed with an inductive approach using sheet and tagged with an identification so that they could be thematic analysis described by Braun and Clarke [35,36]. The distinguished. The analysis was continued by sorting the recorded interviews were transcribed verbatim, and the texts matching codes from both groups into areas. The areas were were read several times to become familiar with the data as a reviewed so that they covered all codes. Subsequently, the areas whole. Each group (intervention and control) was analyzed were analyzed into themes. The themes were then discussed, separately by the first and second authors (MF and ALE). reviewed, and revised several times to ensure that they worked https://nursing.jmir.org/2022/1/e39983 JMIR Nursing 2022 | vol. 5 | iss. 1 | e39983 | p. 4 (page number not for citation purposes) XSL FO RenderX JMIR NURSING Fjell et al well in relation to the areas with included codes. Finally, the manuscript, all authors (MF, ALE, MN, and KS) continuously themes were defined, named, and renamed, resulting in 4 discussed the analysis to increase trustworthiness. To illustrate overarching themes and 10 subthemes (Figure 1). Throughout the findings, examples of individual quotes from patients are the entire analytic process and during the writing of the presented in the Results section. Figure 1. Overarching themes (gray rectangles) and subthemes (white rectangles) identified through the thematic analysis of interviews with the patients (N=40). Continuity in Care Results Having a contact nurse was valuable for good continuity and was a great support during the treatment period, as exemplified Overview by the following quote: Regardless of whether the patients had used the app, few differences emerged in the patients’ experiences of care within Having the same contact nurse was a comfort that the themes, and both groups reported both positive and negative meant a lot...everything became easier when I met experiences. The descriptions of patients’ experiences of care familiar faces. [Patient 6, Control group] are presented in three overarching themes: The health care Lack of continuity was described as having to meet too many context, Being a recipient of care and Taking an active role as different nurses and physicians or not knowing who their contact a patient. The significance of the app for patients is described nurse was, which in turn led to confusion and feelings of in the overarching theme The value of the app. insecurity regarding whether the nurse was in control or not. A patient described this as follows: The Health Care Context It was a bit confusing because I had a change of Accessibility of Care and Time contact nurse four times and I have had four different Patients who had experienced accessibility to care knew who physicians. There has been no continuity if you know they should contact when needed, and they stated that it had what I mean. [Patient 58, Intervention group] been easy to get in touch with the nurse. A patient stated the following: Being a Recipient of Care I had all the contact information I needed. If there Personal Care was something acute or if I needed contact during The atmosphere at the oncology clinics was perceived as the weekend, I had information on where to call and friendly, positive, confirming, and warm, which was not reached the right department instantly. So, it has commonly experienced elsewhere. The patients could laugh really been a comfort. [Patient 53, Intervention group] and have fun with the nurse even though they were receiving The patients said that they had received sufficient time from treatment for cancer. A good dialogue with the nurse where the nurse during visits or over the telephone. Patients who had both parties could ask and answer questions as well as having experienced accessibility difficulties described that they had discussions even if they had different opinions were considered not received specific contact information, and it was difficult crucial. The patients described being listened to and treated with to get in touch with the nurse owing to staff shortages. respect and empathy by the nurse, which led to trust, safety, Sometimes, their calls were returned several days later or not and encouragement to keep up with treatments. The following at all, leading to frustration. This was described as follows: quote describes how a patient experienced it: It was hard not being able to get in direct contact They told me that we will make sure this becomes a with the contact nurse...I was frustrated having to parenthesis in your life. And exactly those words I wait so long to be called. [Patient 5, Control group] took note of, which made it feel like there was a positive future in some way. [Patient 15, Intervention Occasionally, patients did not get enough time to consult with group] the nurse or the opportunity to ask questions during visits or over the phone. Negative experiences such as a sense of coldness and not being taken seriously were also described: https://nursing.jmir.org/2022/1/e39983 JMIR Nursing 2022 | vol. 5 | iss. 1 | e39983 | p. 5 (page number not for citation purposes) XSL FO RenderX JMIR NURSING Fjell et al I felt a sense of coldness in the beginning when I I accepted and followed what they recommended for needed a hug instead. [Patient 44, Control group] me and that worked. I had no need to influence my care and treatment. [Patient 23, Control group] Experiencing a lack of dialogue about symptoms or concerns or having to remind the nurse repeatedly regarding, for example, Sometimes, treatment decisions and future planning were booking appointments or referrals to counseling or prescriptions presented as a package at an early stage, and patients felt that of medicines, gave feelings of being only one in the crowd. their participation was not requested. A patient stated the following: Receiving Information You were told that you should participate in the care. The patients were generally satisfied with the verbal and written I did not know what options I had, or I could say that information they had received as well as answers to questions no alternatives were presented for me. The treatment about the treatment and related symptoms, self-care, and future and the planning were already decided and presented planning. This created a notion of being prepared and knowing for me, and I accepted it. [Patient 33, Intervention what to expect during treatment: group] I never felt anxious or nervous because I knew what There were patients who described participation as following would happen and how I might feel. [Patient 3, advice from the nurse. Realizing that they could do something Control group] themselves helped them feel better and made the treatment more Sometimes, there was a lot of information, which was hard to manageable. Furthermore, having a treatment plan facilitated take in and keep track of. In contrast, some considered the their daily planning. Having the possibility of discussing information to be insufficient in certain areas or felt that they different matters regarding their care was also important for had to nag for answers to their questions. On a few occasions, their feelings of involvement. patients felt that information was withheld regarding why NACT The Value of the App was chosen for them specifically instead of surgery and how the treatment affected the whole body. As a patient stated the A Source of Information following: The patients described using Interaktor as an easy and accessible I do not think the whole picture of my disease was source of information where symptoms caused by the treatment explained to me. I had the feeling of being withheld were explained. Patients could follow the related self-care advice information...I wanted to know everything, so I asked instead of contacting the contact nurse for information about for my medical records to try to understand. [Patient how to manage their symptoms. A patient said the following: 30, Intervention group] Using the app led me to get information, for example Taking an Active Role as a Patient about the mouth, which I had huge problems with. I could read about common symptoms and then there Searching for Information were recommendations on what I could eat and do Some patients described that they actively searched for more myself. I thought it also helped me to seek even more information than what was provided by the nurse. Usually, the information. [Patient 15, Intervention group] internet was used to search for information about the illness, Thus, the information in the app was a good complement to the treatment, and other patients’ experiences of the treatment to verbal and written information provided by the nurse during reassure themselves as to whether symptoms and signs were treatment and created a sense of security. The links to the normal or not: websites in the app felt safe and useful for obtaining more in-depth information. I found out a lot of different things myself about what was going to happen, why I felt like I did and so on. Availability of Care I care about my own body. [Patient 1, Intervention Using Interaktor was experienced by the patients as an easy and group] straightforward way to reach the contact nurse, as they were The pharmacy was also a source of more information regarding contacted directly in the event of severe symptoms or concerns. prescribed medications. Moreover, patient organizations This was described as safe because they knew that they would focusing on patients with breast cancer were used, especially be contacted by the nurse when they felt ill and because they to get in contact with and receive information from persons who experienced that they were contacted quickly: have had breast cancer and have undergone treatment. Well, the times when I needed help, I got it right away. Participation in Own Care Otherwise, without the app, I had to call, and they The patients described their participation in care in various called me back. With the app, they basically called ways. Not being an active participant was commonly mentioned, ten minutes later. [Patient 25, Intervention group] albeit positively; they had accepted the situation and had no Furthermore, being contacted in the event of an alert was much need to influence, choose, or have specific requests about their more convenient than having to look for the right telephone care. The highest priority was to get well from a serious disease, number for the contact nurse. and they had accepted the plan and trusted the nurse to recommend what was best for them: https://nursing.jmir.org/2022/1/e39983 JMIR Nursing 2022 | vol. 5 | iss. 1 | e39983 | p. 6 (page number not for citation purposes) XSL FO RenderX JMIR NURSING Fjell et al to self-care advice, information, and contact with the nurse if Being Seen and Listened To the symptoms were severe. The results are in line with those of Reporting symptoms in the app facilitated the patients to share the recent reviews where patients with cancer experienced apps information about their health condition with the nurse, who as supportive tools that complemented or extended existing could then monitor the patients’ reports. The patients also stated health care [39,40]. that in the event of severe symptoms that led to contact with the nurse, they had the opportunity to ask questions and discuss Although most of the patients felt well informed, a lot of any problems. Thus, the patients felt that they were being information was given at the same time, which sometimes was monitored in a positive way and led to feelings of being seen hard to absorb. Studies have shown that patients undergoing and listened to and not being on their own: treatment for cancer have a great need for relevant information to gain an understanding of the treatment [41-43]. Patients For me, it contributed with feelings of not being cast receiving chemotherapy often have trouble concentrating and aside or of being alone. There was someone who difficulties remembering [44]. Supportive mHealth apps can actually saw what I reported and provided feedback. thus be convenient for patients during treatment, as they can For me, this gave me a sense security I would say, a retrieve information to refresh their memory whenever needed. stability. [Patient 6, Intervention group] We have previously reported increased symptom relief when Being Active in Own Health Management using Interaktor [32], and the results of this study testify that The patients described being active by reporting symptoms the app was a facilitator for patients to participate in their own daily, as opposed to contacting the nurse themselves when they care. By reporting and monitoring their symptoms as well as felt unwell. Furthermore, the app facilitated self-care actions using easily accessible self-care advice, they had been active when symptoms occurred, to increase well-being. Reporting in relieving their symptoms. Another benefit of using the app, and monitoring symptoms in the graphs provided patients with mentioned by some, was the graphs showing the course of their an opportunity to reflect on how they felt every day. Being more symptoms, which was useful in planning everyday life. conscious and aware of their symptoms enabled them to see Furthermore, accessibility to nurses during treatment was patterns and fluctuations in their symptoms. This also facilitated essential for patients, especially in the case of severe symptoms. their planning of activities and created positive feelings and Accessibility to care characterizes how easily a patient can reach comfort when they discovered that many days were trouble free. the health care provider. Availability refers to the extent to Reporting and keeping track of symptoms in the app was which the health care provider has the resources to be reached; described as a way of keeping a diary: for example, through personnel and technology [45]. Presently, Interaktor has served as a safe and convenient tool for achieving For me, it was good to be able to go back and check both. how many days I felt ill, and when I came back to the clinic, I could say that I had felt really ill two weeks Most patients described their dialogue with the nurse as after the treatment, and then it became a bit better. respectful, encouraging, and personal. Using Interaktor So, for me, given that my memory does not work, I reinforced patients’ experiences of being seen, listened to, and think that was supportive. [Patient 30, Intervention feeling safe. Similarly, improved patient safety and increased group] communication between patients and health care providers were shown in a recent review of patients with cancer using mHealth Discussion [46]. Results from other studies on cancer care have shown that an established good relationship between the patient and nurse Principal Findings is vital for the patient to feel acknowledged, which also To the best of our knowledge, this is the first study to facilitates patient participation [18,44]. Interestingly, in this specifically explore experiences of care in patients with breast study, it was common for patients to be satisfied with their own cancer during NACT and investigate the impact of an interactive care without the need to influence or have special requests for app on standard care. Overall, patients from both groups care. In contrast, some appreciated being active in searching expressed positive experiences with their care during NACT, for information and engaging in self-care. This indicates that although negative experiences were also mentioned. The patients patients may not be aware that there are many ways for them in the intervention group experienced that using the app provided to participate in their own care. Studies have confirmed that the added value to standard care with regard to additional support meaning of concept of participation is vague and needs to be for information, self-care, and enhanced participation in their clarified to be practically achieved in a clinical context [14,47]. own care. In Sweden, patients who receive NACT are treated according to national care guidelines, and the role of the contact Strengths and Limitations nurse is to support patients throughout the chain of care [33]. The selected sample was considered to be ample in size and However, results of this study are in congruence with those of heterogeneity to provide richly textured information for other studies showing that patients request more support during trustworthiness of data. A thematic analysis method was chosen, their treatment in addition to what the health care offers [37]. providing a structured approach to handle the large data sets Commonly, this support concerns information and how to and to identify patterns across the data set [48,49]. In addition, manage symptoms caused by the illness and treatment [38]. by conducting most of the interviews and transcriptions, the Presently, the patients described the Interaktor app as providing first author, who also played a major part in the analysis, became extra support during the treatment period by having easy access acquainted with the material. The risk of the first author’s https://nursing.jmir.org/2022/1/e39983 JMIR Nursing 2022 | vol. 5 | iss. 1 | e39983 | p. 7 (page number not for citation purposes) XSL FO RenderX JMIR NURSING Fjell et al preunderstanding was considered by confirming the transparency to a nurse are delivered in care. Patients using the interactive of the analysis with the other authors. The fact that the app experienced this as an added value during their treatment. interviews were conducted 3 months after the end of NACT The extra support for information and self-care enhanced could have caused recall bias; however, the richness of the data participation in their own care, and easy access to nurses gave testifies against this bias. them a sense of security. These findings suggest that there are good reasons to integrate an interactive app as a complement Conclusions to standard care to support patients treated for breast cancer. In this study, it was evident that patients felt well taken care of Further investigation should be conducted on nurses’ and mostly had positive experiences of their care during their experiences of the intervention with Interaktor and how it treatment for breast cancer. This was regardless of whether they impacts their work. Moreover, an evaluation of the had used the app. The results show that there is potential for cost-effectiveness of the app is warranted. improvements in how information, communication, and access Acknowledgments The authors would like to thank all the patients who participated in this study as well as the health care professionals at the oncology clinics who assisted the authors. The authors would also like to thank Marie-Therése Crafoord, who helped the authors with interviews and transcriptions, and the Health Navigator for collaborating and providing technical support for this project. The study was supported by grants from Karolinska Institutet, Stockholm, Sweden (internal grants); the Swedish Research Council, Stockholm, Sweden (521-2014-2723); the Swedish Research Council for Health, Working Life and Welfare, Stockholm, Sweden (2014-04713); the Swedish Cancer Foundation, Stockholm, Sweden (160298); the Kamprad Family Foundation for Entrepreneurship, Research and Charity, Växjö, Sweden (20150015); and the Cancer Research Funds of Radiumhemmet, Stockholm, Sweden (184171). Authors' Contributions ALE and KS contributed to the study design. Interviews and transcriptions were performed by MF and MN. All authors performed the analyses. The manuscript was prepared by MF and subsequently reviewed and revised by all the authors, who also approved the final manuscript. Conflicts of Interest None declared. References 1. Cain H, Macpherson IR, Beresford M, Pinder SE, Pong J, Dixon JM. Neoadjuvant therapy in early breast cancer: treatment considerations and common debates in practice. Clin Oncol (R Coll Radiol) 2017 Oct;29(10):642-652 [FREE Full text] [doi: 10.1016/j.clon.2017.06.003] [Medline: 28669449] 2. Graham PJ, Brar MS, Foster T, McCall M, Bouchard-Fortier A, Temple W, et al. Neoadjuvant chemotherapy for breast cancer, is practice changing? A population-based review of current surgical trends. Ann Surg Oncol 2015 Oct;22(10):3376-3382. [doi: 10.1245/s10434-015-4714-x] [Medline: 26202561] 3. Curigliano G, Burstein HJ, Winer EP, Gnant M, Dubsky P, Loibl S, St. Gallen International Expert Consensus on the Primary Therapy of Early Breast Cancer 2017, et al. De-escalating and escalating treatments for early-stage breast cancer: the St. Gallen international expert consensus conference on the primary therapy of early breast cancer 2017. Ann Oncol 2017 Aug 01;28(8):1700-1712 [FREE Full text] [doi: 10.1093/annonc/mdx308] [Medline: 28838210] 4. Woeste MR, Bhutiani N, Donaldson M, McMasters KM, Ajkay N. Evaluating the effect of neoadjuvant chemotherapy on surgical outcomes after breast conserving surgery. J Surg Oncol 2021 Mar;123(2):439-445. [doi: 10.1002/jso.26301] [Medline: 33259649] 5. Caparica R, Brandão M, Piccart M. Systemic treatment of patients with early breast cancer: recent updates and state of the art. Breast 2019 Nov;48:S7-20. [doi: 10.1016/S0960-9776(19)31115-4] [Medline: 31839166] 6. Asselain B, Barlow W, Bartlett J, Bergh J, Bergsten-Nordström E, Bliss J, et al. Long-term outcomes for neoadjuvant versus adjuvant chemotherapy in early breast cancer: meta-analysis of individual patient data from ten randomised trials. Lancet Oncol 2018 Jan;19(1):27-39 [FREE Full text] [doi: 10.1016/S1470-2045(17)30777-5] [Medline: 29242041] 7. Chatterjee A, Erban JK. Neoadjuvant therapy for treatment of breast cancer: the way forward, or simply a convenient option for patients? Gland Surg 2017 Mar;6(1):119-124 [FREE Full text] [doi: 10.21037/gs.2016.08.07] [Medline: 28210563] 8. Haddad TC, Goetz MP. Landscape of neoadjuvant therapy for breast cancer. Ann Surg Oncol 2015 May;22(5):1408-1415 [FREE Full text] [doi: 10.1245/s10434-015-4405-7] [Medline: 25727557] 9. Denieffe S, Gooney M. A meta-synthesis of women's symptoms experience and breast cancer. Eur J Cancer Care (Engl) 2011 Jul;20(4):424-435. [doi: 10.1111/j.1365-2354.2010.01223.x] [Medline: 20825463] https://nursing.jmir.org/2022/1/e39983 JMIR Nursing 2022 | vol. 5 | iss. 1 | e39983 | p. 8 (page number not for citation purposes) XSL FO RenderX JMIR NURSING Fjell et al 10. Browall M, Brandberg Y, Nasic S, Rydberg P, Bergh J, Rydén A, et al. A prospective exploration of symptom burden clusters in women with breast cancer during chemotherapy treatment. Support Care Cancer 2017 May 15;25(5):1423-1429 [FREE Full text] [doi: 10.1007/s00520-016-3527-1] [Medline: 27981366] 11. Lai XB, Ching SS, Wong FK. A qualitative exploration of the experiences of patients with breast cancer receiving outpatient-based chemotherapy. J Adv Nurs 2017 Oct;73(10):2339-2350. [doi: 10.1111/jan.13309] [Medline: 28370172] 12. McKenzie H, Hayes L, White K, Cox K, Fethney J, Boughton M, et al. Chemotherapy outpatients' unplanned presentations to hospital: a retrospective study. Support Care Cancer 2011 Jul;19(7):963-969. [doi: 10.1007/s00520-010-0913-y] [Medline: 20499108] 13. Boman LE, Sandelin K, Wengström Y, Silén C. Patients' participation during treatment and care of breast cancer - a possibility and an imperative. Eur J Oncol Nurs 2018 Dec;37:35-42. [doi: 10.1016/j.ejon.2018.09.002] [Medline: 30473049] 14. Nilsson M, From I, Lindwall L. The significance of patient participation in nursing care - a concept analysis. Scand J Caring Sci 2019 Mar;33(1):244-251. [doi: 10.1111/scs.12609] [Medline: 30070390] 15. Frank C, Asp M, Dahlberg K. Patient participation in emergency care - a phenomenographic study based on patients' lived experience. Int Emerg Nurs 2009 Jan;17(1):15-22. [doi: 10.1016/j.ienj.2008.09.003] [Medline: 19135011] 16. Ringdal M, Chaboyer W, Ulin K, Bucknall T, Oxelmark L. Patient preferences for participation in patient care and safety activities in hospitals. BMC Nurs 2017;16:69 [FREE Full text] [doi: 10.1186/s12912-017-0266-7] [Medline: 29200965] 17. Cohen E, Botti M. Cancer patients' perceptions of the barriers and facilitators to patient participation in symptom management during an episode of admission. Cancer Nurs 2015;38(6):458-465. [doi: 10.1097/NCC.0000000000000226] [Medline: 25629892] 18. Angel S, Frederiksen KN. Challenges in achieving patient participation: a review of how patient participation is addressed in empirical studies. Int J Nurs Stud 2015 Sep;52(9):1525-1538. [doi: 10.1016/j.ijnurstu.2015.04.008] [Medline: 25980558] 19. Howell D, Mayer DK, Fielding R, Eicher M, Verdonck-de Leeuw IM, Johansen C, Global Partners for Self-Management in Cancer. Management of cancer and health after the clinic visit: a call to action for self-management in cancer care. J Natl Cancer Inst 2021 May 04;113(5):523-531 [FREE Full text] [doi: 10.1093/jnci/djaa083] [Medline: 32525530] 20. Cardoso F, Bese N, Distelhorst SR, Bevilacqua JL, Ginsburg O, Grunberg SM, et al. Supportive care during treatment for breast cancer: resource allocations in low- and middle-income countries. A Breast Health Global Initiative 2013 consensus statement. Breast 2013 Oct;22(5):593-605 [FREE Full text] [doi: 10.1016/j.breast.2013.07.050] [Medline: 24001709] 21. Schmid-Büchi S, Halfens RJ, Müller M, Dassen T, van den Borne B. Factors associated with supportive care needs of patients under treatment for breast cancer. Eur J Oncol Nurs 2013 Mar;17(1):22-29. [doi: 10.1016/j.ejon.2012.02.003] [Medline: 22449715] 22. Beaver K, Williamson S, Briggs J. Exploring patient experiences of neo-adjuvant chemotherapy for breast cancer. Eur J Oncol Nurs 2016 Mar;20:77-86. [doi: 10.1016/j.ejon.2015.06.001] [Medline: 26078034] 23. LeVasseur N, Li H, Cheung W, Myers P, Mckevitt E, Warburton R, et al. Effects of high anxiety scores on surgical and overall treatment plan in patients with breast cancer treated with neoadjuvant therapy. Oncologist 2020 Mar;25(3):212-217 [FREE Full text] [doi: 10.1634/theoncologist.2019-0512] [Medline: 32162800] 24. Tang M, Horsley P, Lewis CR. Emergency department presentations in early stage breast cancer patients receiving adjuvant and neoadjuvant chemotherapy. Intern Med J 2018 May;48(5):583-587. [doi: 10.1111/imj.13785] [Medline: 29722200] 25. Cruz FO, Vilela RA, Ferreira EB, Melo NS, Reis PE. Evidence on the use of mobile apps during the treatment of breast cancer: systematic review. JMIR Mhealth Uhealth 2019 Aug 27;7(8):e13245 [FREE Full text] [doi: 10.2196/13245] [Medline: 31456578] 26. Fridriksdottir N, Gunnarsdottir S, Zoëga S, Ingadottir B, Hafsteinsdottir EJ. Effects of web-based interventions on cancer patients' symptoms: review of randomized trials. Support Care Cancer 2018 Feb;26(2):337-351. [doi: 10.1007/s00520-017-3882-6] [Medline: 28921391] 27. Denis F, Basch E, Septans A, Bennouna J, Urban T, Dueck AC, et al. Two-year survival comparing web-based symptom monitoring vs routine surveillance following treatment for lung cancer. JAMA 2019 Jan 22;321(3):306-307 [FREE Full text] [doi: 10.1001/jama.2018.18085] [Medline: 30667494] 28. Langius-Eklöf A, Crafoord M, Christiansen M, Fjell M, Sundberg K. Effects of an interactive mHealth innovation for early detection of patient-reported symptom distress with focus on participatory care: protocol for a study based on prospective, randomised, controlled trials in patients with prostate and breast cancer. BMC Cancer 2017 Jul 04;17(1):466 [FREE Full text] [doi: 10.1186/s12885-017-3450-y] [Medline: 28676102] 29. Crafoord M, Fjell M, Sundberg K, Nilsson M, Langius-Eklöf A. Engagement in an interactive app for symptom self-management during treatment in patients with breast or prostate cancer: mixed methods study. J Med Internet Res 2020 Aug 10;22(8):e17058 [FREE Full text] [doi: 10.2196/17058] [Medline: 32663140] 30. Sundberg K, Wengström Y, Blomberg K, Hälleberg-Nyman M, Frank C, Langius-Eklöf A. Early detection and management of symptoms using an interactive smartphone application (Interaktor) during radiotherapy for prostate cancer. Support Care Cancer 2017 Jul;25(7):2195-2204 [FREE Full text] [doi: 10.1007/s00520-017-3625-8] [Medline: 28236145] 31. Gustavell T, Sundberg K, Segersvärd R, Wengström Y, Langius-Eklöf A. Decreased symptom burden following surgery due to support from an interactive app for symptom management for patients with pancreatic and periampullary cancer. Acta Oncol 2019 Sep;58(9):1307-1314. [doi: 10.1080/0284186X.2019.1633473] [Medline: 31284797] https://nursing.jmir.org/2022/1/e39983 JMIR Nursing 2022 | vol. 5 | iss. 1 | e39983 | p. 9 (page number not for citation purposes) XSL FO RenderX JMIR NURSING Fjell et al 32. Fjell M, Langius-Eklöf A, Nilsson M, Wengström Y, Sundberg K. Reduced symptom burden with the support of an interactive app during neoadjuvant chemotherapy for breast cancer - a randomized controlled trial. Breast 2020 Jun;51:85-93 [FREE Full text] [doi: 10.1016/j.breast.2020.03.004] [Medline: 32247251] 33. National guidelines for breast cancer. Regional Cancer Centers. 2020. URL: https://www.cancercentrum.se/samverkan/ cancerdiagnoser/brost/vardprogram/ [accessed 2022-03-15] 34. Langius-Eklöf A, Christiansen M, Lindström V, Blomberg K, Hälleberg Nyman M, Wengström Y, et al. Adherence to report and patient perception of an interactive app for managing symptoms during radiotherapy for prostate cancer: descriptive study of logged and interview data. JMIR Cancer 2017 Oct 31;3(2):e18 [FREE Full text] [doi: 10.2196/cancer.7599] [Medline: 29089290] 35. Frank C, Fridlund B, Baigi A, Asp M. Patient participation in the emergency department: an evaluation using a specific instrument to measure patient participation (PPED). J Adv Nurs 2011 Apr;67(4):728-735. [doi: 10.1111/j.1365-2648.2010.05524.x] [Medline: 21118292] 36. Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol 2006 Jan;3(2):77-101. [doi: 10.1191/1478088706qp063oa] 37. Evans Webb M, Murray E, Younger ZW, Goodfellow H, Ross J. The supportive care needs of cancer patients: a systematic review. J Cancer Educ 2021 Oct;36(5):899-908 [FREE Full text] [doi: 10.1007/s13187-020-01941-9] [Medline: 33492650] 38. Fiszer C, Dolbeault S, Sultan S, Brédart A. Prevalence, intensity, and predictors of the supportive care needs of women diagnosed with breast cancer: a systematic review. Psychooncology 2014 Apr;23(4):361-374. [doi: 10.1002/pon.3432] [Medline: 24677334] 39. Darley A, Coughlan B, Furlong E. People with cancer and their family caregivers' personal experience of using supportive eHealth technology: a narrative review. Eur J Oncol Nurs 2021 Oct;54:102030 [FREE Full text] [doi: 10.1016/j.ejon.2021.102030] [Medline: 34531122] 40. Cai T, Huang Y, Zhang Y, Lu Z, Huang Q, Yuan C. Mobile health applications for the care of patients with breast cancer: a scoping review. Int J Nurs Sci 2021 Oct 10;8(4):470-476 [FREE Full text] [doi: 10.1016/j.ijnss.2021.07.003] [Medline: 34631997] 41. Lo AC, Olson R, Feldman-Stewart D, Truong PT, Aquino-Parsons C, Bottorff JL, et al. A patient-centered approach to evaluate the information needs of women with ductal carcinoma in situ. Am J Clin Oncol 2017 Dec;40(6):574-581. [doi: 10.1097/COC.0000000000000184] [Medline: 25730602] 42. Keinki C, Seilacher E, Ebel M, Ruetters D, Kessler I, Stellamanns J, et al. Information needs of cancer patients and perception of impact of the disease, of self-efficacy, and locus of control. J Cancer Educ 2016 Sep;31(3):610-616. [doi: 10.1007/s13187-015-0860-x] [Medline: 25994358] 43. Braun LA, Zomorodbakhsch B, Keinki C, Huebner J. Information needs, communication and usage of social media by cancer patients and their relatives. J Cancer Res Clin Oncol 2019 Jul;145(7):1865-1875. [doi: 10.1007/s00432-019-02929-9] [Medline: 31123824] 44. Ibrahim F, Sandström P, Björnsson B, Larsson AL, Drott J. 'I want to know why and need to be involved in my own care…': a qualitative interview study with liver, bile duct or pancreatic cancer patients about their experiences with involvement in care. Support Care Cancer 2019 Jul;27(7):2561-2567 [FREE Full text] [doi: 10.1007/s00520-018-4548-8] [Medline: 30430301] 45. McLaughlin CG, Wyszewianski L. Access to care: remembering old lessons. Health Serv Res 2002 Dec;37(6):1441-1443 [FREE Full text] [doi: 10.1111/1475-6773.12171] [Medline: 12546280] 46. Osborn J, Ajakaiye A, Cooksley T, Subbe CP. Do mHealth applications improve clinical outcomes of patients with cancer? A critical appraisal of the peer-reviewed literature. Support Care Cancer 2020 Mar;28(3):1469-1479 [FREE Full text] [doi: 10.1007/s00520-019-04945-4] [Medline: 31273501] 47. Eldh AC, Holmefur M, Luhr K, Wenemark M. Assessing and reporting patient participation by means of patient preferences and experiences. BMC Health Serv Res 2020 Jul 29;20(1):702 [FREE Full text] [doi: 10.1186/s12913-020-05574-y] [Medline: 32727451] 48. Lorelli S, Nowell LS, Norris JM, White DE, Moules NJ. Thematic analysis: striving to meet the trustworthiness criteria. Int J Qual Methods 2017 Oct;16(1):1-13. [doi: 10.1177/1609406917733847] 49. Braun V, Clarke V. What can "thematic analysis" offer health and wellbeing researchers? Int J Qual Stud Health Well-being 2014;9:26152 [FREE Full text] [doi: 10.3402/qhw.v9.26152] [Medline: 25326092] Abbreviations mHealth: mobile health NACT: neoadjuvant chemotherapy RCT: randomized controlled trial https://nursing.jmir.org/2022/1/e39983 JMIR Nursing 2022 | vol. 5 | iss. 1 | e39983 | p. 10 (page number not for citation purposes) XSL FO RenderX JMIR NURSING Fjell et al Edited by E Borycki; submitted 31.05.22; peer-reviewed by N Fridriksdottir, D Mayer; comments to author 02.07.22; revised version received 07.07.22; accepted 10.07.22; published 11.08.22 Please cite as: Fjell M, Langius-Eklöf A, Nilsson M, Sundberg K Patients’ Experiences of Care With or Without the Support of an Interactive App During Neoadjuvant Chemotherapy for Breast Cancer: Interview Study JMIR Nursing 2022;5(1):e39983 URL: https://nursing.jmir.org/2022/1/e39983 doi: 10.2196/39983 PMID: 35969443 ©Maria Fjell, Ann Langius-Eklöf, Marie Nilsson, Kay Sundberg. Originally published in JMIR Nursing (https://nursing.jmir.org), 11.08.2022. This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Nursing, is properly cited. The complete bibliographic information, a link to the original publication on https://nursing.jmir.org/, as well as this copyright and license information must be included. https://nursing.jmir.org/2022/1/e39983 JMIR Nursing 2022 | vol. 5 | iss. 1 | e39983 | p. 11 (page number not for citation purposes) XSL FO RenderX http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png JMIR Nursing JMIR Publications

Patients’ Experiences of Care With or Without the Support of an Interactive App During Neoadjuvant Chemotherapy for Breast Cancer: Interview Study

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Abstract

Background: Neoadjuvant chemotherapy (NACT) is often recommended for patients with breast cancer with more aggressive tumor characteristics. As with all chemotherapies, they can cause substantially disturbing symptoms. Most patients receive their treatment as outpatients, which means that they must take responsibility for self-care and management of symptoms at home for a long period. Patients with breast cancer undergoing chemotherapy may not receive sufficient support for management of treatment-related symptoms. For patients undergoing NACT, it has been concluded that information and supportive needs are not always met. In our previous study, the use of mobile health to support patients with breast cancer undergoing NACT reduced symptoms during treatment with the support of an interactive app. Therefore, it is important to investigate how patients experience their care and explore any specific contribution that the app may have brought in care. Objective: This study aims to explore patients’ experiences of care with or without the support of an interactive app during NACT for breast cancer. Methods: This qualitative study was part of a larger randomized controlled trial and included 40 individual face-to-face interviews conducted with patients in both intervention and control groups after the end of NACT. The interviews were audio recorded, and the data were analyzed inductively using thematic analysis. Results: No major differences in experience of care were observed between the groups. A total of 4 overarching themes emerged. In the first theme, The health care context, patients described care as assessible, although sometimes there was a lack of time and continuity with nurses. In the second theme, Being a recipient of care, it emerged that the patients experienced a warm and positive atmosphere at the clinics. In the third theme, Taking an active role as a patient, patients described being active in searching for information and various ways of participation in their own care. In the fourth theme, The value of the app, patients who had used the app experienced it as a complementary source of information, creating a sense of security. Using the app provided patients with the support of being contacted by a nurse if needed, enabled self-care, and facilitated the planning of daily activities. Conclusions: Overall, patients’ experiences of care were similar and mostly positive. However, for patients using the app, it provided additional support for information and self-care and enhanced participation in their own care. The easy access to a nurse gave patients a sense of security. The findings suggest integrating an interactive app as a complement to standard care to support patients with breast cancer during treatment. International Registered Report Identifier (IRRID): RR2-DOI: 10.1186/s12885-017-3450-y (JMIR Nursing 2022;5(1):e39983) doi: 10.2196/39983 KEYWORDS breast cancer; neoadjuvant chemotherapy; experiences of care; mobile health; mHealth; mobile app; patient participation; mobile phone https://nursing.jmir.org/2022/1/e39983 JMIR Nursing 2022 | vol. 5 | iss. 1 | e39983 | p. 1 (page number not for citation purposes) XSL FO RenderX JMIR NURSING Fjell et al the intention of supporting patients in real time during cancer Introduction treatment regarding symptom management [28]. The patients showed high adherence and engagement in using the app, which Patients with breast cancer with more aggressive tumor promoted continuous contact with the nurse [29] and led to less characteristics are often treated using neoadjuvant chemotherapy symptom burden during treatment of prostate and pancreatic (NACT), which is administered before surgery [1,2]. The main cancer [30,31]. In a randomized controlled study using the purpose of NACT is to reduce the tumor size, known as Interaktor app during NACT, the results showed lower symptom downstaging. This may allow less extensive surgery on the prevalence and symptom distress and better emotional breast and axilla, thereby facilitating breast-conserving surgery functioning than the control group 2 weeks after the end of instead of mastectomy, as well as improve cosmetic outcomes treatment [32]. The next step in evaluating the use of the app and reduce postoperative complications such as lymphedema was to explore whether the app contributed to standard care in [3,4]. NACT also allows early treatment of possible any specific way. This study aimed to explore patients’ micrometastases and provides valuable prognostic information experiences of care with or without the support of an interactive regarding the effectiveness of treatment [1,5]. The treatment is app during NACT for breast cancer. considered both safe and effective [1,6-8]. However, as with all chemotherapies, it can cause substantial physical and Methods psychological symptoms [9,10]. In general, most patients with breast cancer receive treatment Study Design as outpatients, which means self-care and management of In this study, a qualitative design was applied to explore symptoms at home for a long period [11,12]. This means that patients’ experiences of care and the significance of using the patients are expected to participate in their own care, and this app. This study is part of a larger randomized controlled trial involves patient learning to obtain knowledge and skills to (RCT; ClinicalTrials.gov NCT02479607) evaluating the manage illness and symptoms in collaboration with the nurse Interaktor app in patients undergoing NACT for breast cancer [13]. It also includes a caring relationship between the nurse [28]. and patient built on reciprocity and trust [14]. However, it is Sample and Setting evident that patients have different needs concerning participation [15]. There are patients who are satisfied with not In the larger RCT, 149 patients diagnosed with breast cancer being so active but also those who express that they want to and treated with NACT were included in an intervention group participate in their own care, and for achieving that, there are (n=74, 49.7%), using the app Interaktor in combination with both facilitators and barriers [16,17]. Participation should be standard care, or a control group (n=75, 50.3%), only receiving considered on an individual basis, according to the patient’s standard care [32]. Inclusion criteria were as follows: aged ≥18 specific situation [18]. years, diagnosed with nonmetastatic breast cancer planned for NACT, able to read and understand Swedish, and no medical In contexts with short hospital stays and outpatient treatments, condition of cognitive dysfunction. The trial was conducted at patients need to actively engage in self-care, but they need 2 university hospital oncology clinics in Stockholm, Sweden. support in managing this condition [13,19]. Previous studies have shown that patients with breast cancer may not receive When agreeing to participate in the RCT, the patients were sufficient supportive care for treatment-related symptoms during informed by the researcher that they could later be contacted chemotherapy [20,21]. Studies regarding patients’ needs during and invited to participate in an interview study about their NACT are few, and they report that information and supportive experiences of care during NACT and the significance of the needs are not always met [22,23]. This may result in impaired app among patients who had used it during the study. Three well-being, reduced health-related quality of life, distressing months after the end of NACT, a consecutive sampling strategy visits to emergency departments, hospitalizations, and poor for the interviews was adopted in the first 20 patients, with an treatment outcomes [22,24]. Therefore, ensuring that the care equal number of patients from both the intervention and control needs are identified, assessed, and managed is imperative. groups at the 2 hospitals. Subsequently, a strategic sampling strategy was used to capture a range of patient characteristics Technical advances in the field of mobile apps and web-based based on group, age, marital status, educational level, systems have led to an increased use of mobile health (mHealth) occupation, and treatment duration in weeks. A final sample of to improve the delivery of health care and to support patients 40 patients from the intervention (n=21, 53%) and control (n=19, with cancer [25,26]. Studies on the use of such technology have 47%) groups was included in this study (Table 1). There were shown decreased symptom burden, improved health-related no statistically significant differences in the sociodemographic quality of life, and increased survival [26,27]. We developed and clinical characteristics at baseline between the 2 groups. an interactive app (Interaktor) for smartphones and tablets, with https://nursing.jmir.org/2022/1/e39983 JMIR Nursing 2022 | vol. 5 | iss. 1 | e39983 | p. 2 (page number not for citation purposes) XSL FO RenderX JMIR NURSING Fjell et al Table 1. Sociodemographic and clinical characteristics at baseline (N=40). Characteristic Intervention group (n=21) Control group (n=19) Age (years) at inclusion, mean (SD; range) 51.7 (12.5; 30-73) 54.2 (13.5; 35-77) Marital status, n (%) Married or cohabiting 17 (81) 14 (74) Living alone 4 (19) 5 (26) Education level, n (%) University 13 (62) 11 (58) Secondary school 3 (14) 6 (32) Primary school 5 (24) 2 (10) Occupation, n (%) Working 16 (76) 13 (68) On sick leave 2 (10) 1 (5) Retired or unemployed 3 (14) 5 (26) 15.3 (1.9; 11-20) 15.6 (2.5; 11-23) NACT duration in weeks, mean (SD; range) NACT: neoadjuvant chemotherapy. concern that sends alerts to a nurse at the clinic by an SMS text Standard Care message, and continuous access to evidence-based self-care Standard care consists of treatment and care according to advice and relevant websites related to assessed symptoms and national care guidelines, including visits to the physician at the other areas of concern. Moreover, the patients could monitor oncology clinic before each chemotherapy treatment, their own reported symptom history over time in graphs. When approximately every second or third week, depending on the alerted, the nurse calls the patient to discuss the symptoms and chemotherapy regimen. Moreover, the patient is assigned a their management. If an alert is triggered, a notification suggests contact nurse who has the overall responsibility for the patient that the patient reads the related self-care advice [34]. During throughout the care chain. The contact nurse provides the patient the RCT, the patients reported symptoms daily on weekdays (8 with information about the treatment and the planning of care AM-4 PM), starting on their first day of NACT and continuing during a scheduled visit before the start of treatment. During until 2 weeks after the end of NACT, approximately 18 weeks treatment, the contact nurse supports patients with information, in total. More details and illustrations of the app have previously establishes a care plan, assesses the patient’s symptoms and been presented [28]. needs, and takes actions based on these symptoms and needs. Data Collection In case of questions or concerns related to treatment, the contact nurse is available during office hours. During other hours, Data collection for this study was conducted between January patients are referred to the oncology emergency unit or inpatient 2016 and August 2017. The interviews were conducted by the or emergency department, depending on which hospital the first and third authors (MF and MN) and an additional patient is being treated at [33]. researcher. All interviews took place in a secluded room at the 2 oncology clinics 3 months after the end of NACT. A The Intervention With Interaktor for Patients With semistructured interview guide was used, covering different Breast Cancer During NACT aspects of patient participation such as the relationship between The content of Interaktor for NACT was developed through patients and nurses, patients’ information needs, self-care, and literature reviews, clinical guidelines, and discussions and caretaking [18,35]. In addition, the patients from the intervention consultations with health care professionals [32]. The app, group were asked about the significance of using the app during running on a smartphone or tablet, has several features: treatment. The patients were asked to speak as freely as possible self-reporting of 14 commonly prevalent symptoms during around each question, and depending on the extent of the chemotherapy, the transfer of the reported symptoms to a secure answers, follow-up questions were used (Textbox 1). The server, a web interface where a nurse can monitor the patient’s interviews were audio recorded and lasted between 14 and 61 reports in real time, a risk assessment model for symptoms of minutes, with a median duration of 27 minutes. https://nursing.jmir.org/2022/1/e39983 JMIR Nursing 2022 | vol. 5 | iss. 1 | e39983 | p. 3 (page number not for citation purposes) XSL FO RenderX JMIR NURSING Fjell et al Textbox 1. Interview guide. Question and follow-up questions: 1. How did you experience the contact (care relationship) between you and the nurse during the treatment period? How has it been? Give examples. Has it come about naturally or have you and/or your relatives been forced to bear the weight of your care? Give examples. Has the nurse considered your experiences/wishes about your care? Give examples. Did you get help when you needed it? Give examples. 2. Do you feel that you have received enough information regarding your care and treatment? Give examples. How has the information been provided (written, verbal, over the phone, or during visits)? When was the information given? Was the information provided in such a way that you understood and could absorb it? Give examples. Did you lack any information? Give examples. 3. How did you experience your encounters with the nurse? Were you given enough time with the nurse? Did you feel you were taken seriously/respected? Give examples. 4. Have you been involved in your care? Can you describe how you have been involved or not involved? 5. Was there a dialogue in your meetings with the nurse? Give examples. In what way have you had the opportunity to express how you wanted your care/treatment to be? Have you had the chance to ask questions or express concerns? Give examples. Has the nurse considered any of your experiences/wishes in the planning of your care? Give examples. 6. Have you received advice and help on how to treat symptoms or other concerns? Give examples. Did the nurse explain the cause of the symptoms? Give examples. Did the nurse explain how the symptoms should be managed? Give examples. How did you experience the information given by the nurse? Did the advice help? Give examples. Did you get help with other basic needs (eg, sick leave and counseling)? Give examples. 7. Is there anything you would like to change in health care? Give examples. 8. What significance did the app have for you during the treatment? (Note: this question concerns the intervention group.) What significance did the app have for your involvement in care? 9. Is there something you would like to add before we finish the interview? Give examples. Statements from the patients in agreement with the study Ethics Approval objective were systematically coded throughout the entire data This study was approved by the regional ethical review board set of each patient and transferred into a coding sheet. A code of Stockholm, Sweden (registration numbers 2013/1652-31/2 consisted of a few words or whole sentences. The codes from and 201712519-32). each group were then discussed by the 2 authors. As there were few differences in the codes concerning experiences of care Data Analysis between the 2 groups, the codes were merged into one coding The interviews were analyzed with an inductive approach using sheet and tagged with an identification so that they could be thematic analysis described by Braun and Clarke [35,36]. The distinguished. The analysis was continued by sorting the recorded interviews were transcribed verbatim, and the texts matching codes from both groups into areas. The areas were were read several times to become familiar with the data as a reviewed so that they covered all codes. Subsequently, the areas whole. Each group (intervention and control) was analyzed were analyzed into themes. The themes were then discussed, separately by the first and second authors (MF and ALE). reviewed, and revised several times to ensure that they worked https://nursing.jmir.org/2022/1/e39983 JMIR Nursing 2022 | vol. 5 | iss. 1 | e39983 | p. 4 (page number not for citation purposes) XSL FO RenderX JMIR NURSING Fjell et al well in relation to the areas with included codes. Finally, the manuscript, all authors (MF, ALE, MN, and KS) continuously themes were defined, named, and renamed, resulting in 4 discussed the analysis to increase trustworthiness. To illustrate overarching themes and 10 subthemes (Figure 1). Throughout the findings, examples of individual quotes from patients are the entire analytic process and during the writing of the presented in the Results section. Figure 1. Overarching themes (gray rectangles) and subthemes (white rectangles) identified through the thematic analysis of interviews with the patients (N=40). Continuity in Care Results Having a contact nurse was valuable for good continuity and was a great support during the treatment period, as exemplified Overview by the following quote: Regardless of whether the patients had used the app, few differences emerged in the patients’ experiences of care within Having the same contact nurse was a comfort that the themes, and both groups reported both positive and negative meant a lot...everything became easier when I met experiences. The descriptions of patients’ experiences of care familiar faces. [Patient 6, Control group] are presented in three overarching themes: The health care Lack of continuity was described as having to meet too many context, Being a recipient of care and Taking an active role as different nurses and physicians or not knowing who their contact a patient. The significance of the app for patients is described nurse was, which in turn led to confusion and feelings of in the overarching theme The value of the app. insecurity regarding whether the nurse was in control or not. A patient described this as follows: The Health Care Context It was a bit confusing because I had a change of Accessibility of Care and Time contact nurse four times and I have had four different Patients who had experienced accessibility to care knew who physicians. There has been no continuity if you know they should contact when needed, and they stated that it had what I mean. [Patient 58, Intervention group] been easy to get in touch with the nurse. A patient stated the following: Being a Recipient of Care I had all the contact information I needed. If there Personal Care was something acute or if I needed contact during The atmosphere at the oncology clinics was perceived as the weekend, I had information on where to call and friendly, positive, confirming, and warm, which was not reached the right department instantly. So, it has commonly experienced elsewhere. The patients could laugh really been a comfort. [Patient 53, Intervention group] and have fun with the nurse even though they were receiving The patients said that they had received sufficient time from treatment for cancer. A good dialogue with the nurse where the nurse during visits or over the telephone. Patients who had both parties could ask and answer questions as well as having experienced accessibility difficulties described that they had discussions even if they had different opinions were considered not received specific contact information, and it was difficult crucial. The patients described being listened to and treated with to get in touch with the nurse owing to staff shortages. respect and empathy by the nurse, which led to trust, safety, Sometimes, their calls were returned several days later or not and encouragement to keep up with treatments. The following at all, leading to frustration. This was described as follows: quote describes how a patient experienced it: It was hard not being able to get in direct contact They told me that we will make sure this becomes a with the contact nurse...I was frustrated having to parenthesis in your life. And exactly those words I wait so long to be called. [Patient 5, Control group] took note of, which made it feel like there was a positive future in some way. [Patient 15, Intervention Occasionally, patients did not get enough time to consult with group] the nurse or the opportunity to ask questions during visits or over the phone. Negative experiences such as a sense of coldness and not being taken seriously were also described: https://nursing.jmir.org/2022/1/e39983 JMIR Nursing 2022 | vol. 5 | iss. 1 | e39983 | p. 5 (page number not for citation purposes) XSL FO RenderX JMIR NURSING Fjell et al I felt a sense of coldness in the beginning when I I accepted and followed what they recommended for needed a hug instead. [Patient 44, Control group] me and that worked. I had no need to influence my care and treatment. [Patient 23, Control group] Experiencing a lack of dialogue about symptoms or concerns or having to remind the nurse repeatedly regarding, for example, Sometimes, treatment decisions and future planning were booking appointments or referrals to counseling or prescriptions presented as a package at an early stage, and patients felt that of medicines, gave feelings of being only one in the crowd. their participation was not requested. A patient stated the following: Receiving Information You were told that you should participate in the care. The patients were generally satisfied with the verbal and written I did not know what options I had, or I could say that information they had received as well as answers to questions no alternatives were presented for me. The treatment about the treatment and related symptoms, self-care, and future and the planning were already decided and presented planning. This created a notion of being prepared and knowing for me, and I accepted it. [Patient 33, Intervention what to expect during treatment: group] I never felt anxious or nervous because I knew what There were patients who described participation as following would happen and how I might feel. [Patient 3, advice from the nurse. Realizing that they could do something Control group] themselves helped them feel better and made the treatment more Sometimes, there was a lot of information, which was hard to manageable. Furthermore, having a treatment plan facilitated take in and keep track of. In contrast, some considered the their daily planning. Having the possibility of discussing information to be insufficient in certain areas or felt that they different matters regarding their care was also important for had to nag for answers to their questions. On a few occasions, their feelings of involvement. patients felt that information was withheld regarding why NACT The Value of the App was chosen for them specifically instead of surgery and how the treatment affected the whole body. As a patient stated the A Source of Information following: The patients described using Interaktor as an easy and accessible I do not think the whole picture of my disease was source of information where symptoms caused by the treatment explained to me. I had the feeling of being withheld were explained. Patients could follow the related self-care advice information...I wanted to know everything, so I asked instead of contacting the contact nurse for information about for my medical records to try to understand. [Patient how to manage their symptoms. A patient said the following: 30, Intervention group] Using the app led me to get information, for example Taking an Active Role as a Patient about the mouth, which I had huge problems with. I could read about common symptoms and then there Searching for Information were recommendations on what I could eat and do Some patients described that they actively searched for more myself. I thought it also helped me to seek even more information than what was provided by the nurse. Usually, the information. [Patient 15, Intervention group] internet was used to search for information about the illness, Thus, the information in the app was a good complement to the treatment, and other patients’ experiences of the treatment to verbal and written information provided by the nurse during reassure themselves as to whether symptoms and signs were treatment and created a sense of security. The links to the normal or not: websites in the app felt safe and useful for obtaining more in-depth information. I found out a lot of different things myself about what was going to happen, why I felt like I did and so on. Availability of Care I care about my own body. [Patient 1, Intervention Using Interaktor was experienced by the patients as an easy and group] straightforward way to reach the contact nurse, as they were The pharmacy was also a source of more information regarding contacted directly in the event of severe symptoms or concerns. prescribed medications. Moreover, patient organizations This was described as safe because they knew that they would focusing on patients with breast cancer were used, especially be contacted by the nurse when they felt ill and because they to get in contact with and receive information from persons who experienced that they were contacted quickly: have had breast cancer and have undergone treatment. Well, the times when I needed help, I got it right away. Participation in Own Care Otherwise, without the app, I had to call, and they The patients described their participation in care in various called me back. With the app, they basically called ways. Not being an active participant was commonly mentioned, ten minutes later. [Patient 25, Intervention group] albeit positively; they had accepted the situation and had no Furthermore, being contacted in the event of an alert was much need to influence, choose, or have specific requests about their more convenient than having to look for the right telephone care. The highest priority was to get well from a serious disease, number for the contact nurse. and they had accepted the plan and trusted the nurse to recommend what was best for them: https://nursing.jmir.org/2022/1/e39983 JMIR Nursing 2022 | vol. 5 | iss. 1 | e39983 | p. 6 (page number not for citation purposes) XSL FO RenderX JMIR NURSING Fjell et al to self-care advice, information, and contact with the nurse if Being Seen and Listened To the symptoms were severe. The results are in line with those of Reporting symptoms in the app facilitated the patients to share the recent reviews where patients with cancer experienced apps information about their health condition with the nurse, who as supportive tools that complemented or extended existing could then monitor the patients’ reports. The patients also stated health care [39,40]. that in the event of severe symptoms that led to contact with the nurse, they had the opportunity to ask questions and discuss Although most of the patients felt well informed, a lot of any problems. Thus, the patients felt that they were being information was given at the same time, which sometimes was monitored in a positive way and led to feelings of being seen hard to absorb. Studies have shown that patients undergoing and listened to and not being on their own: treatment for cancer have a great need for relevant information to gain an understanding of the treatment [41-43]. Patients For me, it contributed with feelings of not being cast receiving chemotherapy often have trouble concentrating and aside or of being alone. There was someone who difficulties remembering [44]. Supportive mHealth apps can actually saw what I reported and provided feedback. thus be convenient for patients during treatment, as they can For me, this gave me a sense security I would say, a retrieve information to refresh their memory whenever needed. stability. [Patient 6, Intervention group] We have previously reported increased symptom relief when Being Active in Own Health Management using Interaktor [32], and the results of this study testify that The patients described being active by reporting symptoms the app was a facilitator for patients to participate in their own daily, as opposed to contacting the nurse themselves when they care. By reporting and monitoring their symptoms as well as felt unwell. Furthermore, the app facilitated self-care actions using easily accessible self-care advice, they had been active when symptoms occurred, to increase well-being. Reporting in relieving their symptoms. Another benefit of using the app, and monitoring symptoms in the graphs provided patients with mentioned by some, was the graphs showing the course of their an opportunity to reflect on how they felt every day. Being more symptoms, which was useful in planning everyday life. conscious and aware of their symptoms enabled them to see Furthermore, accessibility to nurses during treatment was patterns and fluctuations in their symptoms. This also facilitated essential for patients, especially in the case of severe symptoms. their planning of activities and created positive feelings and Accessibility to care characterizes how easily a patient can reach comfort when they discovered that many days were trouble free. the health care provider. Availability refers to the extent to Reporting and keeping track of symptoms in the app was which the health care provider has the resources to be reached; described as a way of keeping a diary: for example, through personnel and technology [45]. Presently, Interaktor has served as a safe and convenient tool for achieving For me, it was good to be able to go back and check both. how many days I felt ill, and when I came back to the clinic, I could say that I had felt really ill two weeks Most patients described their dialogue with the nurse as after the treatment, and then it became a bit better. respectful, encouraging, and personal. Using Interaktor So, for me, given that my memory does not work, I reinforced patients’ experiences of being seen, listened to, and think that was supportive. [Patient 30, Intervention feeling safe. Similarly, improved patient safety and increased group] communication between patients and health care providers were shown in a recent review of patients with cancer using mHealth Discussion [46]. Results from other studies on cancer care have shown that an established good relationship between the patient and nurse Principal Findings is vital for the patient to feel acknowledged, which also To the best of our knowledge, this is the first study to facilitates patient participation [18,44]. Interestingly, in this specifically explore experiences of care in patients with breast study, it was common for patients to be satisfied with their own cancer during NACT and investigate the impact of an interactive care without the need to influence or have special requests for app on standard care. Overall, patients from both groups care. In contrast, some appreciated being active in searching expressed positive experiences with their care during NACT, for information and engaging in self-care. This indicates that although negative experiences were also mentioned. The patients patients may not be aware that there are many ways for them in the intervention group experienced that using the app provided to participate in their own care. Studies have confirmed that the added value to standard care with regard to additional support meaning of concept of participation is vague and needs to be for information, self-care, and enhanced participation in their clarified to be practically achieved in a clinical context [14,47]. own care. In Sweden, patients who receive NACT are treated according to national care guidelines, and the role of the contact Strengths and Limitations nurse is to support patients throughout the chain of care [33]. The selected sample was considered to be ample in size and However, results of this study are in congruence with those of heterogeneity to provide richly textured information for other studies showing that patients request more support during trustworthiness of data. A thematic analysis method was chosen, their treatment in addition to what the health care offers [37]. providing a structured approach to handle the large data sets Commonly, this support concerns information and how to and to identify patterns across the data set [48,49]. In addition, manage symptoms caused by the illness and treatment [38]. by conducting most of the interviews and transcriptions, the Presently, the patients described the Interaktor app as providing first author, who also played a major part in the analysis, became extra support during the treatment period by having easy access acquainted with the material. The risk of the first author’s https://nursing.jmir.org/2022/1/e39983 JMIR Nursing 2022 | vol. 5 | iss. 1 | e39983 | p. 7 (page number not for citation purposes) XSL FO RenderX JMIR NURSING Fjell et al preunderstanding was considered by confirming the transparency to a nurse are delivered in care. Patients using the interactive of the analysis with the other authors. The fact that the app experienced this as an added value during their treatment. interviews were conducted 3 months after the end of NACT The extra support for information and self-care enhanced could have caused recall bias; however, the richness of the data participation in their own care, and easy access to nurses gave testifies against this bias. them a sense of security. These findings suggest that there are good reasons to integrate an interactive app as a complement Conclusions to standard care to support patients treated for breast cancer. In this study, it was evident that patients felt well taken care of Further investigation should be conducted on nurses’ and mostly had positive experiences of their care during their experiences of the intervention with Interaktor and how it treatment for breast cancer. This was regardless of whether they impacts their work. Moreover, an evaluation of the had used the app. The results show that there is potential for cost-effectiveness of the app is warranted. improvements in how information, communication, and access Acknowledgments The authors would like to thank all the patients who participated in this study as well as the health care professionals at the oncology clinics who assisted the authors. The authors would also like to thank Marie-Therése Crafoord, who helped the authors with interviews and transcriptions, and the Health Navigator for collaborating and providing technical support for this project. The study was supported by grants from Karolinska Institutet, Stockholm, Sweden (internal grants); the Swedish Research Council, Stockholm, Sweden (521-2014-2723); the Swedish Research Council for Health, Working Life and Welfare, Stockholm, Sweden (2014-04713); the Swedish Cancer Foundation, Stockholm, Sweden (160298); the Kamprad Family Foundation for Entrepreneurship, Research and Charity, Växjö, Sweden (20150015); and the Cancer Research Funds of Radiumhemmet, Stockholm, Sweden (184171). Authors' Contributions ALE and KS contributed to the study design. Interviews and transcriptions were performed by MF and MN. All authors performed the analyses. The manuscript was prepared by MF and subsequently reviewed and revised by all the authors, who also approved the final manuscript. Conflicts of Interest None declared. References 1. Cain H, Macpherson IR, Beresford M, Pinder SE, Pong J, Dixon JM. Neoadjuvant therapy in early breast cancer: treatment considerations and common debates in practice. Clin Oncol (R Coll Radiol) 2017 Oct;29(10):642-652 [FREE Full text] [doi: 10.1016/j.clon.2017.06.003] [Medline: 28669449] 2. Graham PJ, Brar MS, Foster T, McCall M, Bouchard-Fortier A, Temple W, et al. Neoadjuvant chemotherapy for breast cancer, is practice changing? A population-based review of current surgical trends. Ann Surg Oncol 2015 Oct;22(10):3376-3382. [doi: 10.1245/s10434-015-4714-x] [Medline: 26202561] 3. Curigliano G, Burstein HJ, Winer EP, Gnant M, Dubsky P, Loibl S, St. Gallen International Expert Consensus on the Primary Therapy of Early Breast Cancer 2017, et al. De-escalating and escalating treatments for early-stage breast cancer: the St. Gallen international expert consensus conference on the primary therapy of early breast cancer 2017. Ann Oncol 2017 Aug 01;28(8):1700-1712 [FREE Full text] [doi: 10.1093/annonc/mdx308] [Medline: 28838210] 4. Woeste MR, Bhutiani N, Donaldson M, McMasters KM, Ajkay N. Evaluating the effect of neoadjuvant chemotherapy on surgical outcomes after breast conserving surgery. J Surg Oncol 2021 Mar;123(2):439-445. [doi: 10.1002/jso.26301] [Medline: 33259649] 5. Caparica R, Brandão M, Piccart M. Systemic treatment of patients with early breast cancer: recent updates and state of the art. Breast 2019 Nov;48:S7-20. [doi: 10.1016/S0960-9776(19)31115-4] [Medline: 31839166] 6. Asselain B, Barlow W, Bartlett J, Bergh J, Bergsten-Nordström E, Bliss J, et al. Long-term outcomes for neoadjuvant versus adjuvant chemotherapy in early breast cancer: meta-analysis of individual patient data from ten randomised trials. Lancet Oncol 2018 Jan;19(1):27-39 [FREE Full text] [doi: 10.1016/S1470-2045(17)30777-5] [Medline: 29242041] 7. Chatterjee A, Erban JK. Neoadjuvant therapy for treatment of breast cancer: the way forward, or simply a convenient option for patients? Gland Surg 2017 Mar;6(1):119-124 [FREE Full text] [doi: 10.21037/gs.2016.08.07] [Medline: 28210563] 8. Haddad TC, Goetz MP. Landscape of neoadjuvant therapy for breast cancer. Ann Surg Oncol 2015 May;22(5):1408-1415 [FREE Full text] [doi: 10.1245/s10434-015-4405-7] [Medline: 25727557] 9. Denieffe S, Gooney M. A meta-synthesis of women's symptoms experience and breast cancer. Eur J Cancer Care (Engl) 2011 Jul;20(4):424-435. [doi: 10.1111/j.1365-2354.2010.01223.x] [Medline: 20825463] https://nursing.jmir.org/2022/1/e39983 JMIR Nursing 2022 | vol. 5 | iss. 1 | e39983 | p. 8 (page number not for citation purposes) XSL FO RenderX JMIR NURSING Fjell et al 10. Browall M, Brandberg Y, Nasic S, Rydberg P, Bergh J, Rydén A, et al. A prospective exploration of symptom burden clusters in women with breast cancer during chemotherapy treatment. Support Care Cancer 2017 May 15;25(5):1423-1429 [FREE Full text] [doi: 10.1007/s00520-016-3527-1] [Medline: 27981366] 11. Lai XB, Ching SS, Wong FK. A qualitative exploration of the experiences of patients with breast cancer receiving outpatient-based chemotherapy. J Adv Nurs 2017 Oct;73(10):2339-2350. [doi: 10.1111/jan.13309] [Medline: 28370172] 12. McKenzie H, Hayes L, White K, Cox K, Fethney J, Boughton M, et al. Chemotherapy outpatients' unplanned presentations to hospital: a retrospective study. Support Care Cancer 2011 Jul;19(7):963-969. [doi: 10.1007/s00520-010-0913-y] [Medline: 20499108] 13. Boman LE, Sandelin K, Wengström Y, Silén C. Patients' participation during treatment and care of breast cancer - a possibility and an imperative. Eur J Oncol Nurs 2018 Dec;37:35-42. [doi: 10.1016/j.ejon.2018.09.002] [Medline: 30473049] 14. Nilsson M, From I, Lindwall L. The significance of patient participation in nursing care - a concept analysis. Scand J Caring Sci 2019 Mar;33(1):244-251. [doi: 10.1111/scs.12609] [Medline: 30070390] 15. Frank C, Asp M, Dahlberg K. Patient participation in emergency care - a phenomenographic study based on patients' lived experience. Int Emerg Nurs 2009 Jan;17(1):15-22. [doi: 10.1016/j.ienj.2008.09.003] [Medline: 19135011] 16. Ringdal M, Chaboyer W, Ulin K, Bucknall T, Oxelmark L. Patient preferences for participation in patient care and safety activities in hospitals. BMC Nurs 2017;16:69 [FREE Full text] [doi: 10.1186/s12912-017-0266-7] [Medline: 29200965] 17. Cohen E, Botti M. Cancer patients' perceptions of the barriers and facilitators to patient participation in symptom management during an episode of admission. Cancer Nurs 2015;38(6):458-465. [doi: 10.1097/NCC.0000000000000226] [Medline: 25629892] 18. Angel S, Frederiksen KN. Challenges in achieving patient participation: a review of how patient participation is addressed in empirical studies. Int J Nurs Stud 2015 Sep;52(9):1525-1538. [doi: 10.1016/j.ijnurstu.2015.04.008] [Medline: 25980558] 19. Howell D, Mayer DK, Fielding R, Eicher M, Verdonck-de Leeuw IM, Johansen C, Global Partners for Self-Management in Cancer. Management of cancer and health after the clinic visit: a call to action for self-management in cancer care. J Natl Cancer Inst 2021 May 04;113(5):523-531 [FREE Full text] [doi: 10.1093/jnci/djaa083] [Medline: 32525530] 20. Cardoso F, Bese N, Distelhorst SR, Bevilacqua JL, Ginsburg O, Grunberg SM, et al. Supportive care during treatment for breast cancer: resource allocations in low- and middle-income countries. A Breast Health Global Initiative 2013 consensus statement. Breast 2013 Oct;22(5):593-605 [FREE Full text] [doi: 10.1016/j.breast.2013.07.050] [Medline: 24001709] 21. Schmid-Büchi S, Halfens RJ, Müller M, Dassen T, van den Borne B. Factors associated with supportive care needs of patients under treatment for breast cancer. Eur J Oncol Nurs 2013 Mar;17(1):22-29. [doi: 10.1016/j.ejon.2012.02.003] [Medline: 22449715] 22. Beaver K, Williamson S, Briggs J. Exploring patient experiences of neo-adjuvant chemotherapy for breast cancer. Eur J Oncol Nurs 2016 Mar;20:77-86. [doi: 10.1016/j.ejon.2015.06.001] [Medline: 26078034] 23. LeVasseur N, Li H, Cheung W, Myers P, Mckevitt E, Warburton R, et al. Effects of high anxiety scores on surgical and overall treatment plan in patients with breast cancer treated with neoadjuvant therapy. Oncologist 2020 Mar;25(3):212-217 [FREE Full text] [doi: 10.1634/theoncologist.2019-0512] [Medline: 32162800] 24. Tang M, Horsley P, Lewis CR. Emergency department presentations in early stage breast cancer patients receiving adjuvant and neoadjuvant chemotherapy. Intern Med J 2018 May;48(5):583-587. [doi: 10.1111/imj.13785] [Medline: 29722200] 25. Cruz FO, Vilela RA, Ferreira EB, Melo NS, Reis PE. Evidence on the use of mobile apps during the treatment of breast cancer: systematic review. JMIR Mhealth Uhealth 2019 Aug 27;7(8):e13245 [FREE Full text] [doi: 10.2196/13245] [Medline: 31456578] 26. Fridriksdottir N, Gunnarsdottir S, Zoëga S, Ingadottir B, Hafsteinsdottir EJ. Effects of web-based interventions on cancer patients' symptoms: review of randomized trials. Support Care Cancer 2018 Feb;26(2):337-351. [doi: 10.1007/s00520-017-3882-6] [Medline: 28921391] 27. Denis F, Basch E, Septans A, Bennouna J, Urban T, Dueck AC, et al. Two-year survival comparing web-based symptom monitoring vs routine surveillance following treatment for lung cancer. JAMA 2019 Jan 22;321(3):306-307 [FREE Full text] [doi: 10.1001/jama.2018.18085] [Medline: 30667494] 28. Langius-Eklöf A, Crafoord M, Christiansen M, Fjell M, Sundberg K. Effects of an interactive mHealth innovation for early detection of patient-reported symptom distress with focus on participatory care: protocol for a study based on prospective, randomised, controlled trials in patients with prostate and breast cancer. BMC Cancer 2017 Jul 04;17(1):466 [FREE Full text] [doi: 10.1186/s12885-017-3450-y] [Medline: 28676102] 29. Crafoord M, Fjell M, Sundberg K, Nilsson M, Langius-Eklöf A. Engagement in an interactive app for symptom self-management during treatment in patients with breast or prostate cancer: mixed methods study. J Med Internet Res 2020 Aug 10;22(8):e17058 [FREE Full text] [doi: 10.2196/17058] [Medline: 32663140] 30. Sundberg K, Wengström Y, Blomberg K, Hälleberg-Nyman M, Frank C, Langius-Eklöf A. Early detection and management of symptoms using an interactive smartphone application (Interaktor) during radiotherapy for prostate cancer. Support Care Cancer 2017 Jul;25(7):2195-2204 [FREE Full text] [doi: 10.1007/s00520-017-3625-8] [Medline: 28236145] 31. Gustavell T, Sundberg K, Segersvärd R, Wengström Y, Langius-Eklöf A. Decreased symptom burden following surgery due to support from an interactive app for symptom management for patients with pancreatic and periampullary cancer. Acta Oncol 2019 Sep;58(9):1307-1314. [doi: 10.1080/0284186X.2019.1633473] [Medline: 31284797] https://nursing.jmir.org/2022/1/e39983 JMIR Nursing 2022 | vol. 5 | iss. 1 | e39983 | p. 9 (page number not for citation purposes) XSL FO RenderX JMIR NURSING Fjell et al 32. Fjell M, Langius-Eklöf A, Nilsson M, Wengström Y, Sundberg K. Reduced symptom burden with the support of an interactive app during neoadjuvant chemotherapy for breast cancer - a randomized controlled trial. Breast 2020 Jun;51:85-93 [FREE Full text] [doi: 10.1016/j.breast.2020.03.004] [Medline: 32247251] 33. National guidelines for breast cancer. Regional Cancer Centers. 2020. URL: https://www.cancercentrum.se/samverkan/ cancerdiagnoser/brost/vardprogram/ [accessed 2022-03-15] 34. Langius-Eklöf A, Christiansen M, Lindström V, Blomberg K, Hälleberg Nyman M, Wengström Y, et al. Adherence to report and patient perception of an interactive app for managing symptoms during radiotherapy for prostate cancer: descriptive study of logged and interview data. JMIR Cancer 2017 Oct 31;3(2):e18 [FREE Full text] [doi: 10.2196/cancer.7599] [Medline: 29089290] 35. Frank C, Fridlund B, Baigi A, Asp M. Patient participation in the emergency department: an evaluation using a specific instrument to measure patient participation (PPED). J Adv Nurs 2011 Apr;67(4):728-735. [doi: 10.1111/j.1365-2648.2010.05524.x] [Medline: 21118292] 36. Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol 2006 Jan;3(2):77-101. [doi: 10.1191/1478088706qp063oa] 37. Evans Webb M, Murray E, Younger ZW, Goodfellow H, Ross J. The supportive care needs of cancer patients: a systematic review. J Cancer Educ 2021 Oct;36(5):899-908 [FREE Full text] [doi: 10.1007/s13187-020-01941-9] [Medline: 33492650] 38. Fiszer C, Dolbeault S, Sultan S, Brédart A. Prevalence, intensity, and predictors of the supportive care needs of women diagnosed with breast cancer: a systematic review. Psychooncology 2014 Apr;23(4):361-374. [doi: 10.1002/pon.3432] [Medline: 24677334] 39. Darley A, Coughlan B, Furlong E. People with cancer and their family caregivers' personal experience of using supportive eHealth technology: a narrative review. Eur J Oncol Nurs 2021 Oct;54:102030 [FREE Full text] [doi: 10.1016/j.ejon.2021.102030] [Medline: 34531122] 40. Cai T, Huang Y, Zhang Y, Lu Z, Huang Q, Yuan C. Mobile health applications for the care of patients with breast cancer: a scoping review. Int J Nurs Sci 2021 Oct 10;8(4):470-476 [FREE Full text] [doi: 10.1016/j.ijnss.2021.07.003] [Medline: 34631997] 41. Lo AC, Olson R, Feldman-Stewart D, Truong PT, Aquino-Parsons C, Bottorff JL, et al. A patient-centered approach to evaluate the information needs of women with ductal carcinoma in situ. Am J Clin Oncol 2017 Dec;40(6):574-581. [doi: 10.1097/COC.0000000000000184] [Medline: 25730602] 42. Keinki C, Seilacher E, Ebel M, Ruetters D, Kessler I, Stellamanns J, et al. Information needs of cancer patients and perception of impact of the disease, of self-efficacy, and locus of control. J Cancer Educ 2016 Sep;31(3):610-616. [doi: 10.1007/s13187-015-0860-x] [Medline: 25994358] 43. Braun LA, Zomorodbakhsch B, Keinki C, Huebner J. Information needs, communication and usage of social media by cancer patients and their relatives. J Cancer Res Clin Oncol 2019 Jul;145(7):1865-1875. [doi: 10.1007/s00432-019-02929-9] [Medline: 31123824] 44. Ibrahim F, Sandström P, Björnsson B, Larsson AL, Drott J. 'I want to know why and need to be involved in my own care…': a qualitative interview study with liver, bile duct or pancreatic cancer patients about their experiences with involvement in care. Support Care Cancer 2019 Jul;27(7):2561-2567 [FREE Full text] [doi: 10.1007/s00520-018-4548-8] [Medline: 30430301] 45. McLaughlin CG, Wyszewianski L. Access to care: remembering old lessons. Health Serv Res 2002 Dec;37(6):1441-1443 [FREE Full text] [doi: 10.1111/1475-6773.12171] [Medline: 12546280] 46. Osborn J, Ajakaiye A, Cooksley T, Subbe CP. Do mHealth applications improve clinical outcomes of patients with cancer? A critical appraisal of the peer-reviewed literature. Support Care Cancer 2020 Mar;28(3):1469-1479 [FREE Full text] [doi: 10.1007/s00520-019-04945-4] [Medline: 31273501] 47. Eldh AC, Holmefur M, Luhr K, Wenemark M. Assessing and reporting patient participation by means of patient preferences and experiences. BMC Health Serv Res 2020 Jul 29;20(1):702 [FREE Full text] [doi: 10.1186/s12913-020-05574-y] [Medline: 32727451] 48. Lorelli S, Nowell LS, Norris JM, White DE, Moules NJ. Thematic analysis: striving to meet the trustworthiness criteria. Int J Qual Methods 2017 Oct;16(1):1-13. [doi: 10.1177/1609406917733847] 49. Braun V, Clarke V. What can "thematic analysis" offer health and wellbeing researchers? Int J Qual Stud Health Well-being 2014;9:26152 [FREE Full text] [doi: 10.3402/qhw.v9.26152] [Medline: 25326092] Abbreviations mHealth: mobile health NACT: neoadjuvant chemotherapy RCT: randomized controlled trial https://nursing.jmir.org/2022/1/e39983 JMIR Nursing 2022 | vol. 5 | iss. 1 | e39983 | p. 10 (page number not for citation purposes) XSL FO RenderX JMIR NURSING Fjell et al Edited by E Borycki; submitted 31.05.22; peer-reviewed by N Fridriksdottir, D Mayer; comments to author 02.07.22; revised version received 07.07.22; accepted 10.07.22; published 11.08.22 Please cite as: Fjell M, Langius-Eklöf A, Nilsson M, Sundberg K Patients’ Experiences of Care With or Without the Support of an Interactive App During Neoadjuvant Chemotherapy for Breast Cancer: Interview Study JMIR Nursing 2022;5(1):e39983 URL: https://nursing.jmir.org/2022/1/e39983 doi: 10.2196/39983 PMID: 35969443 ©Maria Fjell, Ann Langius-Eklöf, Marie Nilsson, Kay Sundberg. Originally published in JMIR Nursing (https://nursing.jmir.org), 11.08.2022. This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Nursing, is properly cited. The complete bibliographic information, a link to the original publication on https://nursing.jmir.org/, as well as this copyright and license information must be included. https://nursing.jmir.org/2022/1/e39983 JMIR Nursing 2022 | vol. 5 | iss. 1 | e39983 | p. 11 (page number not for citation purposes) XSL FO RenderX

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JMIR Nursing – JMIR Publications

Published: Aug 11, 2022

Keywords: breast cancer; neoadjuvant chemotherapy; experiences of care; mobile health; mHealth; mobile app; patient participation; mobile phone

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