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Use of a simple form to facilitate communication on long-term consequences of treatment in sarcoma survivors

Use of a simple form to facilitate communication on long-term consequences of treatment in... Background: To report on our experience using a simple optional form to facilitate communication on late effects between the patients and the oncologists during outpatient follow-up and to detail on the spectrum of challenges reported by sarcoma survivors. Methods: The form was presented for the patients to complete before their consultation and covered topics related to late effects and unmet needs that the patient wished to discuss with the medical personnel. Logistic regres- sion analysis examined how the distribution of the topics varied with age, gender, diagnosis and type of treatment received. Results: The form was manageable in a busy outpatient clinic. Of the 265 patients that received the form, 236 (89%) returned it. Patients in a palliative setting and those with other diagnosis than bone sarcoma (BS) and soft-tissue sar- coma (STS) were excluded for subsequent analyses. The final study-cohort comprised 160 patients, 54 (34%) with BS and 106 (66%) with STS. Among these, 140 (88%) had late-effect topics they wanted to discuss with their oncologist. Fatigue was raised by 39% of the patients, pain by 29% and impaired mobility by 23%. BS patients raised fatigue more often (P < 0.005) than those with STS. Patients who had undergone multimodal treatment with chemotherapy raised fatigue more frequently (P < 0.001) than those who had only undergone surgery, radiotherapy or both. Conclusions: A simple form on the long-term consequences of sarcoma treatment achieved a high response rate, was feasible to use in an outpatient clinic and facilitated communication on these issues. Fatigue was the most fre- quent topic raised and it was raised significantly more often in patients who had undergone chemotherapy. Keywords: Bone sarcoma, Soft tissue sarcoma, Late effects, Patient consultation, Follow-up, Fatigue on conditions such as cancer-related fatigue, sexual dys- Background function and infertility, pain, cognitive dysfunction, fear A significant proportion of cancer survivors face a range of recurrence, and disrupted body image [3–6]. However, of physical and psychosocial long-term consequences fol- the evidence shows that health care professionals are lowing treatment that negatively impact several aspects likely to underestimate or misjudge patient health pref- of their lives, leading to a general reduction in well-being erences and support needs, especially among young and [1, 2]. The need to address late effects of cancer treat - adolescent cancer survivors [7–9]. ment is widely acknowledged, as demonstrated by studies Treatment of patients with bone sarcoma (BS) and soft- tissue sarcoma (STS) often involves extensive surgery [10, *Correspondence: ivahom@ous-hf.no 11] that can lead to physical and functional impairments Department of Oncology, Norwegian Radium Hospital, Oslo University [12, 13]. In addition to surgery, curative treatments often Hospital, Nydalen, P.O. Box 4953, Oslo 0424, Norway require a multimodal approach involving radiation and Full list of author information is available at the end of the article © The Author(s) 2020. 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The Creative Commons Public Domain Dedication waiver (http://creat iveco mmons .org/publi cdoma in/ zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data. Hompland et al. Clin Sarcoma Res (2020) 10:2 Page 2 of 10 chemotherapy, significantly adding to the risk of ther - Patients apy-related complications [10, 11]. Medical late effects From the start of November 2015 to the end of April include infertility, gonadal hormone deficiency, second 2016, a total of 383 patients attended the two sarcoma malignant neoplasms, cardiomyopathy, pulmonary dys- outpatient clinics (Fig. 1). A form (Fig. 2) was presented function, and renal insufficiency [14–17]. BS survivors, to the patients as an optional service before their con- who are often adolescents and young adults [18], par- sultation and handed back to the clinicians at the start ticularly struggle with late effects following treatment of the consultation. The form was not provided to any [13, 19, 20]. Health concerns among sarcoma survivors patients with evidence of metastases or local relapse may be related both directly and indirectly to treatment. or if the outpatient clinic that day was excessively busy The patients’ perspective on the impact of late effects has (118 patients). The key information from the form was not been thoroughly studied. Specifically, it is unknown incorporated into the patient’s medical records. Demo- which challenges patients consider most important for graphic and disease-specific data were obtained from receiving support and guidance from health care pro- the prospective clinical sarcoma database to identify viders at consultations during long-term outpatient groups according to diagnosis, treatment (curative, follow-up. long-term medical treatment and palliative) and age. A health intervention pilot project was initiated at This study was approved by the local data protection Oslo University Hospital (OUH) after a previous study officer, and informed consent was obtained from all showed that bone cancer survivors reported consider- patients. able daily life challenges following cancer treatment The present investigation focused on patients with [21, 22]. A simple form was introduced at our sarcoma STS and BS who had undergone treatment with a cura- outpatient clinic to facilitate communication between tive intent and who had not had any recurrence of the patients and oncologists regarding unmet needs. This disease. The study excluded 76 patients with gastroin - form included well-known physical and psychosocial testinal stromal tumor (GIST), fibromatosis and other topics for patients to discuss with their clinicians to diagnoses, resulting in a final study-cohort of 160 facilitate the patients’ need for information and guid- patients (Fig.  1). These patients were stratified into ance. The primary aim was to augment the quality of two groups according to the type of treatment they late-effect conversations by providing patients time had received. The first group included patients who before their consultations to ponder their most impor- had been treated with surgery only, surgery and radio- tant complaints and by giving the oncologists insights therapy, or radiotherapy only (SRT). The second group and suggestions for topics to discuss with their patients. comprised patients who had received multimodal treat- The present study reports on our experiences with this ment including multi-drug chemotherapy (MMT) in form. The secondary aim was to explore which topics addition to surgery and or radiotherapy. BS and STS survivors considered the most important to discuss with their clinicians, and to determine whether The form there was a relationship between complaints related to A simple form (Fig.  2) to facilitate communication on diagnosis and the type of treatment received, as well as late effects was constructed based on previous qualita - to explore any gender differences. tive studies in BS survivors [21, 22]. The form covered seven topics related to late effects, one box that patients could mark if there was any other topic they wanted to Patients and methods raise with the clinician and one box that patients could The Sarcoma Group at the Norwegian Radium Hospi - mark if they did not have any specific topic to dis - tal, OUH, has a catchment area of approximately 2.8 cuss (Fig.  2). The patients were encouraged to indicate million people and receive referrals also from other a priority of up to two of these topics before the fol- health regions in Norway. During systematic follow-up low-up conversation with the clinician, and they were of patients treated at our institution, all demographic informed that such reporting was voluntary. The form and disease-specific data are stored in a prospective was intended to prompt the doctor to secure time that clinical sarcoma database. The oncological sarcoma day to respond to the topics prioritized by the patient. outpatient clinics take care of patients who have been A process would then be initiated to provide general treated with surgery and additional radiotherapy and/ information, available printed materials, or referrals to or chemotherapy. Systematic follow-up is usually other clinical specialists and resources within our hos- undertaken for 10  years in expanding time-intervals pital environment. with yearly consultations occurring after 5 years. Hompland et al. Clin Sarcoma Res (2020) 10:2 Page 3 of 10 Fig. 1 Consort diagram of the patients in the study Statistical analysis divided into two groups: 64 (40%) who had undergone Regarding the descriptive analyses of the demographic SRT and 96 (60%) who had undergone MMT. The median and clinic data, the Chi squared test or Fischer’s exact time from the end of a patient’s cancer treatment to the test was used where appropriate for categorical data. entering study entry was 6 years (range 1–31 years). The Student’s t -test was used for continuous data (age). Comparing BS and STS, we observed that the median Associations between the different topics were analyzed age was lower in the BS patients (P < 0.001). Also, the BS using the phi coefficient (Ø ). Logistic regression analy- patients had undergone more MMT than the patients sis was performed to examine how the distribution of with STS (P < 0.001); the STS patients were more fre- the topics varied with gender, diagnosis (BS versus STS) quently treated with SRT and radiotherapy only. No and treatments (SRT versus MMT). Gender differences significant differences were found related to gen - were adjusted for age, and the differences in diagnosis der (P = 0.08) or to the time since diagnosis (P = 0.80) and treatments were adjusted for age and gender. The (Table  1). The patients who had received MMT were odds ratio (OR) and the adjusted OR are presented with younger (P < 0.001) and had a longer time since diagno- 95% confidence intervals (95% CI). A two-tailed P value sis (P = 0.02), but there were no differences in gender of less than 0.05 was considered statistically significant. between the groups (P = 0.94) (Table 1). All analyses were performed with the Statistical Pack- age for the Social Sciences (SPSS) version 21 (SPSS, The form Inc., Chicago, IL). The form was feasible to use in a busy outpatient clinic. It was not too time-consuming for the scheduled (20– Results 30 min) consultations. The response rate was high, as 236 Patient demographics, diagnoses and treatments (89%) of the 265 patients who received the form returned The patient characteristics are summarized in Table  1. Of it to the clinician (Fig. 1). the 160 patients included in this study (Fig.  1), 74 were In the patients who had undergone curative-intent females, and 86 were males. The median age was 55 years treatment for BS and STS, 140 (88%) of the 160 patients (range 19–86). The study included 54 (34%) patients had experienced late effects that they wanted to discuss with BS and 106 (66%) with STS. The participants were with their clinicians. Only 20 patients (12%) reported Hompland et al. Clin Sarcoma Res (2020) 10:2 Page 4 of 10 Fig. 2 The form handed out to the patients. Translated from the Norwegian version into English Hompland et al. Clin Sarcoma Res (2020) 10:2 Page 5 of 10 Table 1 Patients characteristics according to diagnosis and treatment groups Entire group, BS, n = 54 (%) STS, n = 106 (%) P-value SRT, n = 64 (%) MMT, n = 96 (%) P-value N = 160 (%) Median age, years (range) 55 (19–86) 39 (19–80) 59 (19–86) < 0.001 66 (28–86) 46 (19–78) <0.001 Gender 0.09 0.94 Female 74 (46) 30 (56) 44 (41) 30 (47) 44 (46) Male 86 (54) 24 (44) 62 (59) 34 (53) 52 (54) Median time since diagno- 6 (0–31) 5 (1–22) 6 (1–31) 0.11 4 (1–19) 6 (1–31) 0.07 sis, years (range) Time since diagnosis, years 0.80 0.02 <5 68 (43) 22 (41) 46 (43) 34 (53) 34 (35) ≥5 92 (57) 32 (59) 60 (57) 30 (47) 62 (65) Treatment group < 0.001 SRT 64 (40) 9 (17) 55 (52) MMT 96 (60) 45 (83) 51 (48) Italic values indicate significance of P-value (P < 0.05) BS bone sarcoma, STS soft tissue sarcoma, SRT surgery and or radiotherapy group, MMT multimodal treatment group no specific topic that they wished to discuss. Fatigue was found in both the non-adjusted (OR 2.7; 95% CI was raised by 39% of the patients, pain by 29%, and 0.9–8.5; P = 0.05) and adjusted analysis (OR 2.9; 95% CI mobility challenges by 23%. The least used category 0.9–8.3; P = 0.05). was intestinal/urinary (4% of the patients) (Fig.  3). The When the topics selected on the form were compared patients who marked fatigue topic often wanted to dis- to diagnoses, we found that the patients with BS raised cuss psychological issues (23% versus 4% who did not fatigue (OR 3.1; 95% CI 1.6–6.2; P < 0.001), sexual prob- mark fatigue; Ø = 0.30; P < 0.001) and pain (40% versus lems (OR 2.8; 95% CI 1.1–7.1; P = 0.04), psychological 21% who did not mark fatigue; Ø = 0.22; P = 0.005). No problems (OR 3.1; 95% CI 1.2–8.3; P = 0.02) and meet- other significant associations between the topics were ing a peer (OR 5.1; 95% CI 1.3–21; P = 0.02) signifi - found. There were no statistically significant gender cantly more often than the patients with STS (Table  3). differences in the use of the form (Table  2). However, Fatigue (OR 3.0; 95% CI 1.4–6.6; P < 0.005) and meet- a trend of males marking “no special topic to discuss” ing a peer (OR 10; 95% CI 2.0–54; P = 0.005) remained Fig. 3 Distribution between the topics raised Hompland et al. Clin Sarcoma Res (2020) 10:2 Page 6 of 10 Table 2 Topic raised according to gender Topic Gender N (%) Crude OR (95% CI) P-valueAdjusted OR (95% CI) P-value Pain Female 24/74 (32) 1.0 (ref ) 1.0 (ref ) Male 22/86 (26) 0.7 (0.4–1.4) 0.35 0.7 (0.4–1.5) 0.37 Fatigue Female 32/74 (43) 1.0 1.0 Male 31/86 (36) 0.7 (0.4–1.4) 0.42 0.8 (0.4–1.5) 0.41 Bowel/urination Female 4/74 (5) 1.0 1.0 Male 3/86 (4) 0.6 (0.1–2.9) 0.56 0.6 (0.1–3.0) 0.57 Sexual Female 9/74 (12) 1.0 1.0 Male 11/86 (13) 1.1 (0.4–2.7) 0.90 1.1 (0.4–2.9) 0.83 Mobility Female 15/74 (20) 1.0 1.0 Male 21/86 (24) 1.3 (0.6–2.7) 0.53 1.2 (0.6–2.8) 0.48 Psychological Female 8/74 (11) 1.0 1.0 Male 11/86 (13) 1.2 (0.5–3.2) 0.70 1.3 (0.5–3.4) 0.63 Other Female 15/74 (20) 1.0 1.0 Male 8/86 (9) 0.4 (0.2–1.0) 0.05 0.4 (0.2–1.0) 0.05 Peer Female 4/74 (5) 1.0 1.0 Male 6/86 (7) 1.3 (0.4–4.8) 0.68 1.3 (0.3–4.8) 0.79 No topic Female 5/74 (7) 1.0 1.0 0.05 Male 14/86 (17) 2.7 (0.9–8.5) 0.05 2.9 (0.9–8.3) OR odds ratio, CI confidence interval, ref reference Adjusted for age Table 3 Topic raised according to type of sarcoma Topic Diagnosis N (%) Crude OR (95% CI) P-valueAdjusted OR (95% CI) P-value Pain STS 27/106 (26) 1.0 (ref ) 1.0 (ref ) BS 19/54 (35) 1.6 (0.8–3.2) 0.20 1.5 (0.7–3.3) 0.36 Fatigue STS 32/106 (30) 1.0 1.0 BS 31/54 (57) 3.1 (1.6–6.2) 0.001 3.1 (1.4–6.7) 0.004 Bowel/urination STS 5/106 (5) 1.0 1.0 BS 2/54 (4) 0.8 (0.1–4.1) 0.77 0.6 (.01–4.1) 0.59 Sexual STS 9/106 (8) 1.0 1.0 BS 11/54 (20) 2.8 (1.1–7.1) 0.04 2.6 (0.8–7.7) 0.10 Mobility STS 20/106 (19) 1.0 1.0 BS 16/54 (30) 1.8 (0.8–3.9) 0.11 1.9 (0.8–4.5) Psychological STS 8/106 (8) 1.0 1.0 BS 11/54 (20) 3.1 (1.2–8.3) 0.02 2.9 (0.9–8.5) 0.05 Other STS 14/106 (13) 1.0 1.0 BS 9/54 (17) 1.3 (0.5–3.3) 0.56 1.4 (0.5–4.1) 0.50 Peer STS 3/106 (3) 1.0 1.0 BS 7/54 (13) 5.1 (1.3–21) 0.02 10 (2.0–54) 0.005 No topic STS 16/106 (15) 1.0 1.0 BS 4/54 (7) 0.4 (0.1–1.4) 0.17 0.5 (0.1–1.8) 0.27 N are presented as number of patients that raised the topic within the diagnosis group with % in the brackets Italic values indicate significance of P-value (P < 0.05) STS soft-tissue sarcoma, BS bone sarcoma, OR odds ratio, CI confidence interval, ref reference Adjusted for age and gender Hompland et al. Clin Sarcoma Res (2020) 10:2 Page 7 of 10 statistically significant when adjusted for age and gen - differences in the use of the form were found (data not der (Table 3). The patients in the MMT group raised the shown). topic of fatigue (OR 4.3; 95% CI 2.1–8.8; P < 0.001) and mobility (OR 2.4; 95% CI 1.0–5.5; P = 0.04) significantly Discussion more often than the patients in the SRT group, but only In the present study, we observed that sarcoma survivors fatigue (OR 4.3; 95% CI 1.9–9.5; P < 0.001) remained sta- were eager to discuss their unmet needs and daily chal- tistically significant in the adjusted analysis (Table 4 ). lenges with their clinicians. To our knowledge, this is first As mentioned above, fatigue was moderately associ- study to report a subjective ranking of late effects by sar - ated with psychological issues and pain. Hence, a mul- coma survivors in the context of discussing these issues tiple logistic regression analysis including these topics with clinicians during long-term follow-up. together with fatigue, age and sex was performed on A high response was obtained from the form used in the diagnosis and treatment groups to ascertain the sig- this study. Among the 160 patients included in this study, nificance of fatigue. In these analyses, fatigue remained as many as 140 (88%) indicated a desire to discuss late statistically significant in both the diagnosis (BS: OR effects with their clinician. Attention to this issue should 2.7; 95% CI 1.2–6.0; P = 0.02) and treatment groups be a vital part of the sarcoma patient follow-up. Our sim- (MMT: OR 4.5; 95% CI 1.9–10.5; P = 0.001). ple form was easy to use in a busy outpatient clinic and In the patients with STS, 51 (48%) underwent MMT, did not incur any additional costs. The patients were pro - and 55 (53%) underwent SRT. The patients in the MMT vided time to reflect on the topics included in the form, group raised the topic of fatigue (HR 4.2; 95% CI 1.7– allowing them to focus on the conversation that fol- 10; P = 0.002) significantly more frequently than the lowed. In our opinion, the form not only gave the doctor patients in the SRT group, even after adjustments for insight and suggestions for the follow-up conversations, age and gender (HR 4.3; 95% CI 1.7–11; P = 0.003). it also increased the patient’s intake and comprehension No other differences were found between the treat - of the conversation content. We hypothesize that this ment groups (data not shown). In the patients with improved the quality of the consultation. In addition, BS, only nine (17%) patients received SRT, while 44 the form could serve as a clinical survey for recognizing (83%) received MMT. Here, no statistically significant whether specific themes are repeated by patients that Table 4 Topic raised according to type of treatment Topic Treatment N (%) Crude OR (95% CI) P-valueAdjusted OR (95% CI) P-value group Pain SRT 13/64 (20) 1.0 (ref ) 1.0 (ref ) MMT 33/96 (34) 2.1 (0.9–4.3) 0.06 2.1 (0.9–4.8) 0.07 Fatigue SRT 13/64 (20) 1.0 1.0 MMT 50/96 (52) 4.3 (2.1–8.8) < 0.001 4.3 (1.9–9.5) < 0.001 Bowel/urination SRT 1/64 (2) 1.0 1.0 MMT 6/96 (6) 4.2 (0.5–36) 0.19 5.4 (0.5–54) 0.15 Sexual SRT 6/64 (9) 1.0 1.0 MMT 14/96 (15) 1.7 (0.6–4.5) 0.33 1.3 (0.4–3.9) 0.68 Mobility SRT 9/64 (14) 1.0 1.0 MMT 27/96 (28) 2.4 (1.0–5.5) 0.04 2.4 (0.9–5.8) 0.06 Psychological SRT 6/64 (9) 1.0 1.0 MMT 13/96 (14) 1.5 (0.5–4.2) 0.42 1.0 (0.3–3.2) 0.96 Other SRT 11/64 (17) 1.0 1.0 0.54 MMT 12/96 (12) 0.7 (0.3–1.7) 0.41 05 (0.3–2.0) Peer SRT 3/64 (5) 1.0 1.0 MMT 7/96 (7) 1.6 (0.4–6.4) 0.51 2.0 (0.4–9.8) 0.36 No topic SRT 11/64 (17) 1.0 1.0 MMT 9/96 (8) 0.5 (0.2–1.3) 0.15 0.4 (0.1–1.3) 0.14 N are presented as number of patients that raised the topic within the treatment group with % in the brackets Italic values indicate significance of P-value (P < 0.05) OR odds ratio, CI confidence interval, ref reference, SRT surgery/radiotherapy group, MMT multimodal therapy group Adjusted for age and gender Hompland et al. Clin Sarcoma Res (2020) 10:2 Page 8 of 10 require special attention and action. As this was a pilot analyzing fatigue in the STS cohort and comparing the study with relatively few patients, this form should pref- SRT and MMT groups, we found that the patient in the erably be validated in a larger patient cohort. A validated, MMT group also raised the topic of fatigue significantly multidimensional, cancer-specific measure of unmet more often than the patients who only received SRT. needs, such as the SCNS-SF34 [23], could have been These findings are at odds with the study by Servaes et al. used in this study. However, it is possible that this may [26] who found no differences in patients who received not have encompassed needs which are unique to sar- adjuvant therapy (including chemotherapy and radio- coma patients. An obvious lack is the topic of mobility, therapy). However, in that study, only 25 of 170 patients since sarcoma survivors experience high rates of physical received adjuvant therapy and only 19 received chemo- impairment  [12, 13]. To score subjective quality of life in therapy, likely too small of a cohort from which to draw patients who have undergone surgery for lower extrem- conclusions. Some research has shown that fatigue may ity malignant bone tumor, the Bt-Dux is often used [24]. be connected to a premorbid personality with neuroti- This is, however, not necessarily applicable for patients cism, poor communication and social functioning [29]. who have undergone heavy chemotherapy. Also, both Higher emotional instability and self-reported stress in these instruments would probably have been too time- the premorbid period has been associated with a higher consuming to use in a busy outpatient clinic. Our results risk for chronic fatigue-like illness [30]. Across stud- demonstrate that a simple communication form regard- ies, the strongest and most consistent predictor of post- ing late effects, such as the one used in this study, can treatment fatigue is pre-treatment fatigue [3], but there is draw attention to late effects for both the patient and the evidence that chemotherapy plays a role in fatigue devel- clinician and should be considered a routine part of fol- opment, as reported in a recent meta-analysis of breast low-up consultations. cancer survivors [31]. Our findings support this notion The most prevalent topic raised in the current study and indicate that premorbid conditions should not be was fatigue (39%). Fatigue is known to have a multifac- used an excuse to avoid justified guidance and support. tored etiology and pathogenesis [3], and it is one of the Fatigue and depression are strongly correlated in can- most commonly reported late effects following cancer cer [3], but it is difficult to determine whether fatigue treatment [25]. In sarcoma patients, one study found that is a symptom or a trigger of depression. Patients may fatigue was an important problem for more than one- attribute their depression symptoms to a less stigmatized fourth of the patients who had been treated for a malig- state, e.g., as a somatic explanation that is translated into nant or benign bone or soft tissue tumor [26]. Fatigue is fatigue. Alternatively, fatigue may precipitate depressive probably underreported by patients and underdiagnosed moods by interfering with social, work-related and lei- by clinicians [27]. The lack of a universally accepted defi - sure activities. In the present study, the desire to discuss nition for cancer-related fatigue likely contributes to this fatigue was moderately associated with raising the topic problem. The National Comprehensive Cancer Network of psychological issues. However, when data were con- has defined fatigue as “a distressing, persistent, subjec - trolled for psychological issues, fatigue remained statisti- tive sense of physical, emotional, and/or cognitive tired- cally significant. As for other previously reported studies ness or exhaustion related to cancer or cancer treatment, [3], we cannot discern the causality between fatigue that is not proportional to recent activity and interferes and depression. Nevertheless, a simple form such as the with usual functioning” [28]. A similar description was one used in our study may draw attention to both top- used in our form. Although fatigue was not the main ics, revealing the nature of the complaints and guiding issue studied in this investigation and the questionnaire proper interventions. had not been validated for measuring fatigue, patient Although fatigue awareness and the number of stud- undergoing MMT (including chemotherapy), raised the ies on the issue have increased in recent years, a focus on topic of “fatigue-like complaints” significantly more often fatigue has not yet become routine during clinical follow- than patients who received only SRT. Patients wanting up [32]. According to the present findings, this practice to discuss fatigue does not directly translate to a conclu- should be adopted, especially in sarcoma patients who sion that the patients actually had fatigue. However, our have received chemotherapy. results imply that fatigue may be more prevalent in sar- Pain (29%) and mobility (23%) were important topics to coma patients who have received chemotherapy as part discuss for the patients. The patients in the present study of their treatment. This is further reinforced by our find - attended orthopedic and abdominal sarcoma surgeons’ ing that BS patients raised the fatigue topic significantly outpatient clinics in addition to our outpatient clinic. more often than patients with STS. BS patients usu- Hence, we cannot exclude that the patients focused ally undergo more and longer chemotherapy than STS on other topics at these oncological outpatient clinics patients [10, 11], as was seen also in our cohort. When and raised mobility topics more frequently with their Hompland et al. Clin Sarcoma Res (2020) 10:2 Page 9 of 10 Funding surgeons. Interestingly, there were no statistically signifi - This study was funded by the Norwegian Radium Hospital Research Founda- cant differences in the use of the form between genders. tion, Grant SP 2512, and the Radium Hospital Foundation, Grant 175009. Whether the late effects of sarcoma treatment are uni - Availability of data and materials versal to both genders cannot be answered by our study. The datasets generated during and/or analyzed during the current study are There was, however, a trend toward males using “no available from the corresponding author on reasonable request. topic to discuss” more frequently than females. In a larger Ethics approval and consent to participate patient cohort, this trend may have reached significance. This study was approved by the local data protection officer, and informed There are some limitations to the present study. As consent was obtained from all patients. previously mentioned, the form used to score the late Consent for publication effects among patients and to facilitate communication Not applicable. between the clinician and the patient had not been vali- dated. Since this was a pilot study integrated into a busy Competing interests The authors declare that they have no competing interests. oncology practice, we chose to present the patients with a simple form. The majority of our patients responded to Author details the form, and its use was manageable for the clinicians Department of Oncology, Norwegian Radium Hospital, Oslo University Hos- pital, Nydalen, P.O. Box 4953, Oslo 0424, Norway. Department of Interdiscipli- given the time available. To properly report on the issue nary Health Sciences, Institute of Health and Society, University of Oslo, Oslo, of fatigue from a methodological perspective, a validated Norway. Department of Health and Care Sciences, Faculty of Health Sciences, questionnaire [33] to score the symptoms and severity of UiT The Arctic University of Norway, Tromsø, Norway. Institute of Clinical Medicine, University of Oslo, Oslo, Norway. fatigue would have been preferred. Due to the sample size and limited power, analyses of the interactions among Received: 28 October 2019 Accepted: 16 December 2019 the topics were not performed. The statistical power of the study was limited by the relatively small number of patients within the groups, implying a risk of type II sta- tistical errors. Despite these limitations, we believe that References 1. Foster C, Wright D, Hill H, et al. Psychosocial implications of living 5 years our data accurately represent the clinical experiences of a or more following a cancer diagnosis: a systematic review of the research busy oncological outpatient clinic. evidence. Eur J Cancer Care. 2009;18(3):223–47. 2. Treanor C, Donnelly M. 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Psychosocial outcomes and MMT: multimodal treatment group (including chemotherapy); SPSS: Statisti- interventions among cancer survivors diagnosed during adolescence cal Package for the Social Sciences; Ø: the phi coefficient; OR: odds ratio; CI: and young adulthood (AYA): a systematic review. J Cancer Surviv. confidence interval. 2016;10(5):814–31. 10. ESMO/European Sarcoma Network Working Group. Bone sarcoma: ESMO Acknowledgements Clinical Practice Guidelines for diagnosis, treatment and follow-up. Ann The authors appreciate the valuable contributions of oncology nurses Turid Oncol. 2014;25(Suppl 3):iii113–23. Tønnesen and Iwona Kaminska Cronin for making this study possible in a busy 11. Casali PG, Abecassis N, Bauer S et al. Soft tissue and visceral sarco- outpatient setting. mas: ESMO-EURACAN Clinical Practice Guidelines for diagnosis, treat- ment and follow-up. Ann Oncol. 2018. (Epub ahead of print). Authors’ contributions 12. Saebye C, Fugloe HM, Nymark T, et al. Factors associated with reduced IH drafted the manuscript and performed the final editing of the manuscript. functional outcome and quality of life in patients having limb-sparing IH and ØSB assembled the data and LF constructed the form used in the surgery for soft tissue sarcomas—a national multicenter study of 128 study. IH and GFL analyzed and interpreted the patient data. All authors patients. Acta Oncol. 2017;56(2):239–44. assisted in conducting the study, contributed significantly to the scientific/ 13. Fernandez-Pineda I, Hudson MM, Pappo AS, et al. Long-term functional intellectual content and provided critical revisions to the draft manuscript. All outcomes and quality of life in adult survivors of childhood extremity authors read and approved the final manuscript. Hompland et al. Clin Sarcoma Res (2020) 10:2 Page 10 of 10 sarcomas: a report from the St. Jude lifetime cohort study. J Cancer underwent surgery for lower extremity malignant bone tumor. Pediatr Surviv. 2017;11(1):1–12. Blood Cancer. 2009;53(3):348–55. 14. Longhi A, Ferrari S, Tamburini A. Late effects of chemotherapy and 25. Spathis A, Booth S, Grove S, et al. Teenage and young adult cancer-related radiotherapy in osteosarcoma and Ewing sarcoma patients: the Italian fatigue is prevalent, distressing and neglected: it is time to intervene. Sarcoma Group experience (1983–2006). Cancer. 2012;118(20):5050–9. A systematic literature review and narrative synthesis. J Adolesc Young 15. Nagarajan R, Kamruzzaman A, Ness K, et al. Twenty years of follow-up Adult Oncol. 2015;4(1):3–17. of survivors of childhood osteosarcoma: a report from the Childhood 26. Servaes P, Verhagen S, Schreuder HW, et al. Fatigue after treatment for Cancer Survivor Study. Cancer. 2011;117(3):625–34. malignant and benign bone and soft tissue tumors. J Pain Symptom 16. Mansky P, Arai A, Stratton P, et al. Treatment late effects in long-term Manag. 2003;26(6):1113–22. survivors of pediatric sarcoma. 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Compr Psychiatry. 2010;51(1):78–85. and young adult survivors of lower extremity bone tumors. Pediatr Blood 30. Kato K, Sullivan PF, Evengård B, et al. Premorbid predictors of chronic Cancer. 2012;58(2):265–723. fatigue. Arch Gen Psychiatry. 2006;63(11):1267–72. 20. Bekkering WP, Vlieland TPV, Koopman HM, et al. Quality of life in young 31. Abrahams HJ, Gielissen MF, Schmits IC, et al. Risk factors, prevalence, and patients after bone tumor surgery around the knee joint and comparison course of severe fatigue after breast cancer treatment: a meta-analysis with healthy controls. Pediatr Blood Cancer. 2010;54(5):738–45. involving 12,327 breast cancer survivors. Ann Oncol. 2016;27(6):965–74. 21. Fauske L, Bruland OS, Grov EK, et al. Cured of primary bone cancer, but at 32. Wang XS, Woodruff JF. Cancer-related and treatment-related fatigue. what cost: a qualitative study of functional impairment and lost opportu- Gynecol Oncol. 2015;136(3):446–52. nities. Sarcoma. 2015;2015:484196. 33. Minton O, Stone P. A systematic review of the scales used for the meas- 22. Fauske L, Bondevik H, Bruland ØS, et al. Negative and positive conse- urement of cancer-related fatigue (CRF). Ann Oncol. 2009;20(1):17–25. quences of cancer treatment experienced by long-term osteosarcoma survivors: a qualitative study. Anticancer Res. 2015;35(11):6081–90. Publisher’s Note 23. Boyes A, Girgis A, Lecathelinais C. Brief assessment of adult can- Springer Nature remains neutral with regard to jurisdictional claims in pub- cer patients’ perceived needs: development and validation of the lished maps and institutional affiliations. 34-item Supportive Care Needs Survey (SCNS-SF34). J Eval Clin Pract. 2009;15:602–6. 24. Bekkering WP, Lieland TP, Koopman HM, et al. The Bt-DUX: development of a subjective measure of health-related quality of life in patients who Ready to submit your research ? 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Use of a simple form to facilitate communication on long-term consequences of treatment in sarcoma survivors

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Copyright © The Author(s) 2020
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10.1186/s13569-019-0124-3
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Abstract

Background: To report on our experience using a simple optional form to facilitate communication on late effects between the patients and the oncologists during outpatient follow-up and to detail on the spectrum of challenges reported by sarcoma survivors. Methods: The form was presented for the patients to complete before their consultation and covered topics related to late effects and unmet needs that the patient wished to discuss with the medical personnel. Logistic regres- sion analysis examined how the distribution of the topics varied with age, gender, diagnosis and type of treatment received. Results: The form was manageable in a busy outpatient clinic. Of the 265 patients that received the form, 236 (89%) returned it. Patients in a palliative setting and those with other diagnosis than bone sarcoma (BS) and soft-tissue sar- coma (STS) were excluded for subsequent analyses. The final study-cohort comprised 160 patients, 54 (34%) with BS and 106 (66%) with STS. Among these, 140 (88%) had late-effect topics they wanted to discuss with their oncologist. Fatigue was raised by 39% of the patients, pain by 29% and impaired mobility by 23%. BS patients raised fatigue more often (P < 0.005) than those with STS. Patients who had undergone multimodal treatment with chemotherapy raised fatigue more frequently (P < 0.001) than those who had only undergone surgery, radiotherapy or both. Conclusions: A simple form on the long-term consequences of sarcoma treatment achieved a high response rate, was feasible to use in an outpatient clinic and facilitated communication on these issues. Fatigue was the most fre- quent topic raised and it was raised significantly more often in patients who had undergone chemotherapy. Keywords: Bone sarcoma, Soft tissue sarcoma, Late effects, Patient consultation, Follow-up, Fatigue on conditions such as cancer-related fatigue, sexual dys- Background function and infertility, pain, cognitive dysfunction, fear A significant proportion of cancer survivors face a range of recurrence, and disrupted body image [3–6]. However, of physical and psychosocial long-term consequences fol- the evidence shows that health care professionals are lowing treatment that negatively impact several aspects likely to underestimate or misjudge patient health pref- of their lives, leading to a general reduction in well-being erences and support needs, especially among young and [1, 2]. The need to address late effects of cancer treat - adolescent cancer survivors [7–9]. ment is widely acknowledged, as demonstrated by studies Treatment of patients with bone sarcoma (BS) and soft- tissue sarcoma (STS) often involves extensive surgery [10, *Correspondence: ivahom@ous-hf.no 11] that can lead to physical and functional impairments Department of Oncology, Norwegian Radium Hospital, Oslo University [12, 13]. In addition to surgery, curative treatments often Hospital, Nydalen, P.O. Box 4953, Oslo 0424, Norway require a multimodal approach involving radiation and Full list of author information is available at the end of the article © The Author(s) 2020. This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creat iveco mmons .org/licen ses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creat iveco mmons .org/publi cdoma in/ zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data. Hompland et al. Clin Sarcoma Res (2020) 10:2 Page 2 of 10 chemotherapy, significantly adding to the risk of ther - Patients apy-related complications [10, 11]. Medical late effects From the start of November 2015 to the end of April include infertility, gonadal hormone deficiency, second 2016, a total of 383 patients attended the two sarcoma malignant neoplasms, cardiomyopathy, pulmonary dys- outpatient clinics (Fig. 1). A form (Fig. 2) was presented function, and renal insufficiency [14–17]. BS survivors, to the patients as an optional service before their con- who are often adolescents and young adults [18], par- sultation and handed back to the clinicians at the start ticularly struggle with late effects following treatment of the consultation. The form was not provided to any [13, 19, 20]. Health concerns among sarcoma survivors patients with evidence of metastases or local relapse may be related both directly and indirectly to treatment. or if the outpatient clinic that day was excessively busy The patients’ perspective on the impact of late effects has (118 patients). The key information from the form was not been thoroughly studied. Specifically, it is unknown incorporated into the patient’s medical records. Demo- which challenges patients consider most important for graphic and disease-specific data were obtained from receiving support and guidance from health care pro- the prospective clinical sarcoma database to identify viders at consultations during long-term outpatient groups according to diagnosis, treatment (curative, follow-up. long-term medical treatment and palliative) and age. A health intervention pilot project was initiated at This study was approved by the local data protection Oslo University Hospital (OUH) after a previous study officer, and informed consent was obtained from all showed that bone cancer survivors reported consider- patients. able daily life challenges following cancer treatment The present investigation focused on patients with [21, 22]. A simple form was introduced at our sarcoma STS and BS who had undergone treatment with a cura- outpatient clinic to facilitate communication between tive intent and who had not had any recurrence of the patients and oncologists regarding unmet needs. This disease. The study excluded 76 patients with gastroin - form included well-known physical and psychosocial testinal stromal tumor (GIST), fibromatosis and other topics for patients to discuss with their clinicians to diagnoses, resulting in a final study-cohort of 160 facilitate the patients’ need for information and guid- patients (Fig.  1). These patients were stratified into ance. The primary aim was to augment the quality of two groups according to the type of treatment they late-effect conversations by providing patients time had received. The first group included patients who before their consultations to ponder their most impor- had been treated with surgery only, surgery and radio- tant complaints and by giving the oncologists insights therapy, or radiotherapy only (SRT). The second group and suggestions for topics to discuss with their patients. comprised patients who had received multimodal treat- The present study reports on our experiences with this ment including multi-drug chemotherapy (MMT) in form. The secondary aim was to explore which topics addition to surgery and or radiotherapy. BS and STS survivors considered the most important to discuss with their clinicians, and to determine whether The form there was a relationship between complaints related to A simple form (Fig.  2) to facilitate communication on diagnosis and the type of treatment received, as well as late effects was constructed based on previous qualita - to explore any gender differences. tive studies in BS survivors [21, 22]. The form covered seven topics related to late effects, one box that patients could mark if there was any other topic they wanted to Patients and methods raise with the clinician and one box that patients could The Sarcoma Group at the Norwegian Radium Hospi - mark if they did not have any specific topic to dis - tal, OUH, has a catchment area of approximately 2.8 cuss (Fig.  2). The patients were encouraged to indicate million people and receive referrals also from other a priority of up to two of these topics before the fol- health regions in Norway. During systematic follow-up low-up conversation with the clinician, and they were of patients treated at our institution, all demographic informed that such reporting was voluntary. The form and disease-specific data are stored in a prospective was intended to prompt the doctor to secure time that clinical sarcoma database. The oncological sarcoma day to respond to the topics prioritized by the patient. outpatient clinics take care of patients who have been A process would then be initiated to provide general treated with surgery and additional radiotherapy and/ information, available printed materials, or referrals to or chemotherapy. Systematic follow-up is usually other clinical specialists and resources within our hos- undertaken for 10  years in expanding time-intervals pital environment. with yearly consultations occurring after 5 years. Hompland et al. Clin Sarcoma Res (2020) 10:2 Page 3 of 10 Fig. 1 Consort diagram of the patients in the study Statistical analysis divided into two groups: 64 (40%) who had undergone Regarding the descriptive analyses of the demographic SRT and 96 (60%) who had undergone MMT. The median and clinic data, the Chi squared test or Fischer’s exact time from the end of a patient’s cancer treatment to the test was used where appropriate for categorical data. entering study entry was 6 years (range 1–31 years). The Student’s t -test was used for continuous data (age). Comparing BS and STS, we observed that the median Associations between the different topics were analyzed age was lower in the BS patients (P < 0.001). Also, the BS using the phi coefficient (Ø ). Logistic regression analy- patients had undergone more MMT than the patients sis was performed to examine how the distribution of with STS (P < 0.001); the STS patients were more fre- the topics varied with gender, diagnosis (BS versus STS) quently treated with SRT and radiotherapy only. No and treatments (SRT versus MMT). Gender differences significant differences were found related to gen - were adjusted for age, and the differences in diagnosis der (P = 0.08) or to the time since diagnosis (P = 0.80) and treatments were adjusted for age and gender. The (Table  1). The patients who had received MMT were odds ratio (OR) and the adjusted OR are presented with younger (P < 0.001) and had a longer time since diagno- 95% confidence intervals (95% CI). A two-tailed P value sis (P = 0.02), but there were no differences in gender of less than 0.05 was considered statistically significant. between the groups (P = 0.94) (Table 1). All analyses were performed with the Statistical Pack- age for the Social Sciences (SPSS) version 21 (SPSS, The form Inc., Chicago, IL). The form was feasible to use in a busy outpatient clinic. It was not too time-consuming for the scheduled (20– Results 30 min) consultations. The response rate was high, as 236 Patient demographics, diagnoses and treatments (89%) of the 265 patients who received the form returned The patient characteristics are summarized in Table  1. Of it to the clinician (Fig. 1). the 160 patients included in this study (Fig.  1), 74 were In the patients who had undergone curative-intent females, and 86 were males. The median age was 55 years treatment for BS and STS, 140 (88%) of the 160 patients (range 19–86). The study included 54 (34%) patients had experienced late effects that they wanted to discuss with BS and 106 (66%) with STS. The participants were with their clinicians. Only 20 patients (12%) reported Hompland et al. Clin Sarcoma Res (2020) 10:2 Page 4 of 10 Fig. 2 The form handed out to the patients. Translated from the Norwegian version into English Hompland et al. Clin Sarcoma Res (2020) 10:2 Page 5 of 10 Table 1 Patients characteristics according to diagnosis and treatment groups Entire group, BS, n = 54 (%) STS, n = 106 (%) P-value SRT, n = 64 (%) MMT, n = 96 (%) P-value N = 160 (%) Median age, years (range) 55 (19–86) 39 (19–80) 59 (19–86) < 0.001 66 (28–86) 46 (19–78) <0.001 Gender 0.09 0.94 Female 74 (46) 30 (56) 44 (41) 30 (47) 44 (46) Male 86 (54) 24 (44) 62 (59) 34 (53) 52 (54) Median time since diagno- 6 (0–31) 5 (1–22) 6 (1–31) 0.11 4 (1–19) 6 (1–31) 0.07 sis, years (range) Time since diagnosis, years 0.80 0.02 <5 68 (43) 22 (41) 46 (43) 34 (53) 34 (35) ≥5 92 (57) 32 (59) 60 (57) 30 (47) 62 (65) Treatment group < 0.001 SRT 64 (40) 9 (17) 55 (52) MMT 96 (60) 45 (83) 51 (48) Italic values indicate significance of P-value (P < 0.05) BS bone sarcoma, STS soft tissue sarcoma, SRT surgery and or radiotherapy group, MMT multimodal treatment group no specific topic that they wished to discuss. Fatigue was found in both the non-adjusted (OR 2.7; 95% CI was raised by 39% of the patients, pain by 29%, and 0.9–8.5; P = 0.05) and adjusted analysis (OR 2.9; 95% CI mobility challenges by 23%. The least used category 0.9–8.3; P = 0.05). was intestinal/urinary (4% of the patients) (Fig.  3). The When the topics selected on the form were compared patients who marked fatigue topic often wanted to dis- to diagnoses, we found that the patients with BS raised cuss psychological issues (23% versus 4% who did not fatigue (OR 3.1; 95% CI 1.6–6.2; P < 0.001), sexual prob- mark fatigue; Ø = 0.30; P < 0.001) and pain (40% versus lems (OR 2.8; 95% CI 1.1–7.1; P = 0.04), psychological 21% who did not mark fatigue; Ø = 0.22; P = 0.005). No problems (OR 3.1; 95% CI 1.2–8.3; P = 0.02) and meet- other significant associations between the topics were ing a peer (OR 5.1; 95% CI 1.3–21; P = 0.02) signifi - found. There were no statistically significant gender cantly more often than the patients with STS (Table  3). differences in the use of the form (Table  2). However, Fatigue (OR 3.0; 95% CI 1.4–6.6; P < 0.005) and meet- a trend of males marking “no special topic to discuss” ing a peer (OR 10; 95% CI 2.0–54; P = 0.005) remained Fig. 3 Distribution between the topics raised Hompland et al. Clin Sarcoma Res (2020) 10:2 Page 6 of 10 Table 2 Topic raised according to gender Topic Gender N (%) Crude OR (95% CI) P-valueAdjusted OR (95% CI) P-value Pain Female 24/74 (32) 1.0 (ref ) 1.0 (ref ) Male 22/86 (26) 0.7 (0.4–1.4) 0.35 0.7 (0.4–1.5) 0.37 Fatigue Female 32/74 (43) 1.0 1.0 Male 31/86 (36) 0.7 (0.4–1.4) 0.42 0.8 (0.4–1.5) 0.41 Bowel/urination Female 4/74 (5) 1.0 1.0 Male 3/86 (4) 0.6 (0.1–2.9) 0.56 0.6 (0.1–3.0) 0.57 Sexual Female 9/74 (12) 1.0 1.0 Male 11/86 (13) 1.1 (0.4–2.7) 0.90 1.1 (0.4–2.9) 0.83 Mobility Female 15/74 (20) 1.0 1.0 Male 21/86 (24) 1.3 (0.6–2.7) 0.53 1.2 (0.6–2.8) 0.48 Psychological Female 8/74 (11) 1.0 1.0 Male 11/86 (13) 1.2 (0.5–3.2) 0.70 1.3 (0.5–3.4) 0.63 Other Female 15/74 (20) 1.0 1.0 Male 8/86 (9) 0.4 (0.2–1.0) 0.05 0.4 (0.2–1.0) 0.05 Peer Female 4/74 (5) 1.0 1.0 Male 6/86 (7) 1.3 (0.4–4.8) 0.68 1.3 (0.3–4.8) 0.79 No topic Female 5/74 (7) 1.0 1.0 0.05 Male 14/86 (17) 2.7 (0.9–8.5) 0.05 2.9 (0.9–8.3) OR odds ratio, CI confidence interval, ref reference Adjusted for age Table 3 Topic raised according to type of sarcoma Topic Diagnosis N (%) Crude OR (95% CI) P-valueAdjusted OR (95% CI) P-value Pain STS 27/106 (26) 1.0 (ref ) 1.0 (ref ) BS 19/54 (35) 1.6 (0.8–3.2) 0.20 1.5 (0.7–3.3) 0.36 Fatigue STS 32/106 (30) 1.0 1.0 BS 31/54 (57) 3.1 (1.6–6.2) 0.001 3.1 (1.4–6.7) 0.004 Bowel/urination STS 5/106 (5) 1.0 1.0 BS 2/54 (4) 0.8 (0.1–4.1) 0.77 0.6 (.01–4.1) 0.59 Sexual STS 9/106 (8) 1.0 1.0 BS 11/54 (20) 2.8 (1.1–7.1) 0.04 2.6 (0.8–7.7) 0.10 Mobility STS 20/106 (19) 1.0 1.0 BS 16/54 (30) 1.8 (0.8–3.9) 0.11 1.9 (0.8–4.5) Psychological STS 8/106 (8) 1.0 1.0 BS 11/54 (20) 3.1 (1.2–8.3) 0.02 2.9 (0.9–8.5) 0.05 Other STS 14/106 (13) 1.0 1.0 BS 9/54 (17) 1.3 (0.5–3.3) 0.56 1.4 (0.5–4.1) 0.50 Peer STS 3/106 (3) 1.0 1.0 BS 7/54 (13) 5.1 (1.3–21) 0.02 10 (2.0–54) 0.005 No topic STS 16/106 (15) 1.0 1.0 BS 4/54 (7) 0.4 (0.1–1.4) 0.17 0.5 (0.1–1.8) 0.27 N are presented as number of patients that raised the topic within the diagnosis group with % in the brackets Italic values indicate significance of P-value (P < 0.05) STS soft-tissue sarcoma, BS bone sarcoma, OR odds ratio, CI confidence interval, ref reference Adjusted for age and gender Hompland et al. Clin Sarcoma Res (2020) 10:2 Page 7 of 10 statistically significant when adjusted for age and gen - differences in the use of the form were found (data not der (Table 3). The patients in the MMT group raised the shown). topic of fatigue (OR 4.3; 95% CI 2.1–8.8; P < 0.001) and mobility (OR 2.4; 95% CI 1.0–5.5; P = 0.04) significantly Discussion more often than the patients in the SRT group, but only In the present study, we observed that sarcoma survivors fatigue (OR 4.3; 95% CI 1.9–9.5; P < 0.001) remained sta- were eager to discuss their unmet needs and daily chal- tistically significant in the adjusted analysis (Table 4 ). lenges with their clinicians. To our knowledge, this is first As mentioned above, fatigue was moderately associ- study to report a subjective ranking of late effects by sar - ated with psychological issues and pain. Hence, a mul- coma survivors in the context of discussing these issues tiple logistic regression analysis including these topics with clinicians during long-term follow-up. together with fatigue, age and sex was performed on A high response was obtained from the form used in the diagnosis and treatment groups to ascertain the sig- this study. Among the 160 patients included in this study, nificance of fatigue. In these analyses, fatigue remained as many as 140 (88%) indicated a desire to discuss late statistically significant in both the diagnosis (BS: OR effects with their clinician. Attention to this issue should 2.7; 95% CI 1.2–6.0; P = 0.02) and treatment groups be a vital part of the sarcoma patient follow-up. Our sim- (MMT: OR 4.5; 95% CI 1.9–10.5; P = 0.001). ple form was easy to use in a busy outpatient clinic and In the patients with STS, 51 (48%) underwent MMT, did not incur any additional costs. The patients were pro - and 55 (53%) underwent SRT. The patients in the MMT vided time to reflect on the topics included in the form, group raised the topic of fatigue (HR 4.2; 95% CI 1.7– allowing them to focus on the conversation that fol- 10; P = 0.002) significantly more frequently than the lowed. In our opinion, the form not only gave the doctor patients in the SRT group, even after adjustments for insight and suggestions for the follow-up conversations, age and gender (HR 4.3; 95% CI 1.7–11; P = 0.003). it also increased the patient’s intake and comprehension No other differences were found between the treat - of the conversation content. We hypothesize that this ment groups (data not shown). In the patients with improved the quality of the consultation. In addition, BS, only nine (17%) patients received SRT, while 44 the form could serve as a clinical survey for recognizing (83%) received MMT. Here, no statistically significant whether specific themes are repeated by patients that Table 4 Topic raised according to type of treatment Topic Treatment N (%) Crude OR (95% CI) P-valueAdjusted OR (95% CI) P-value group Pain SRT 13/64 (20) 1.0 (ref ) 1.0 (ref ) MMT 33/96 (34) 2.1 (0.9–4.3) 0.06 2.1 (0.9–4.8) 0.07 Fatigue SRT 13/64 (20) 1.0 1.0 MMT 50/96 (52) 4.3 (2.1–8.8) < 0.001 4.3 (1.9–9.5) < 0.001 Bowel/urination SRT 1/64 (2) 1.0 1.0 MMT 6/96 (6) 4.2 (0.5–36) 0.19 5.4 (0.5–54) 0.15 Sexual SRT 6/64 (9) 1.0 1.0 MMT 14/96 (15) 1.7 (0.6–4.5) 0.33 1.3 (0.4–3.9) 0.68 Mobility SRT 9/64 (14) 1.0 1.0 MMT 27/96 (28) 2.4 (1.0–5.5) 0.04 2.4 (0.9–5.8) 0.06 Psychological SRT 6/64 (9) 1.0 1.0 MMT 13/96 (14) 1.5 (0.5–4.2) 0.42 1.0 (0.3–3.2) 0.96 Other SRT 11/64 (17) 1.0 1.0 0.54 MMT 12/96 (12) 0.7 (0.3–1.7) 0.41 05 (0.3–2.0) Peer SRT 3/64 (5) 1.0 1.0 MMT 7/96 (7) 1.6 (0.4–6.4) 0.51 2.0 (0.4–9.8) 0.36 No topic SRT 11/64 (17) 1.0 1.0 MMT 9/96 (8) 0.5 (0.2–1.3) 0.15 0.4 (0.1–1.3) 0.14 N are presented as number of patients that raised the topic within the treatment group with % in the brackets Italic values indicate significance of P-value (P < 0.05) OR odds ratio, CI confidence interval, ref reference, SRT surgery/radiotherapy group, MMT multimodal therapy group Adjusted for age and gender Hompland et al. Clin Sarcoma Res (2020) 10:2 Page 8 of 10 require special attention and action. As this was a pilot analyzing fatigue in the STS cohort and comparing the study with relatively few patients, this form should pref- SRT and MMT groups, we found that the patient in the erably be validated in a larger patient cohort. A validated, MMT group also raised the topic of fatigue significantly multidimensional, cancer-specific measure of unmet more often than the patients who only received SRT. needs, such as the SCNS-SF34 [23], could have been These findings are at odds with the study by Servaes et al. used in this study. However, it is possible that this may [26] who found no differences in patients who received not have encompassed needs which are unique to sar- adjuvant therapy (including chemotherapy and radio- coma patients. An obvious lack is the topic of mobility, therapy). However, in that study, only 25 of 170 patients since sarcoma survivors experience high rates of physical received adjuvant therapy and only 19 received chemo- impairment  [12, 13]. To score subjective quality of life in therapy, likely too small of a cohort from which to draw patients who have undergone surgery for lower extrem- conclusions. Some research has shown that fatigue may ity malignant bone tumor, the Bt-Dux is often used [24]. be connected to a premorbid personality with neuroti- This is, however, not necessarily applicable for patients cism, poor communication and social functioning [29]. who have undergone heavy chemotherapy. Also, both Higher emotional instability and self-reported stress in these instruments would probably have been too time- the premorbid period has been associated with a higher consuming to use in a busy outpatient clinic. Our results risk for chronic fatigue-like illness [30]. Across stud- demonstrate that a simple communication form regard- ies, the strongest and most consistent predictor of post- ing late effects, such as the one used in this study, can treatment fatigue is pre-treatment fatigue [3], but there is draw attention to late effects for both the patient and the evidence that chemotherapy plays a role in fatigue devel- clinician and should be considered a routine part of fol- opment, as reported in a recent meta-analysis of breast low-up consultations. cancer survivors [31]. Our findings support this notion The most prevalent topic raised in the current study and indicate that premorbid conditions should not be was fatigue (39%). Fatigue is known to have a multifac- used an excuse to avoid justified guidance and support. tored etiology and pathogenesis [3], and it is one of the Fatigue and depression are strongly correlated in can- most commonly reported late effects following cancer cer [3], but it is difficult to determine whether fatigue treatment [25]. In sarcoma patients, one study found that is a symptom or a trigger of depression. Patients may fatigue was an important problem for more than one- attribute their depression symptoms to a less stigmatized fourth of the patients who had been treated for a malig- state, e.g., as a somatic explanation that is translated into nant or benign bone or soft tissue tumor [26]. Fatigue is fatigue. Alternatively, fatigue may precipitate depressive probably underreported by patients and underdiagnosed moods by interfering with social, work-related and lei- by clinicians [27]. The lack of a universally accepted defi - sure activities. In the present study, the desire to discuss nition for cancer-related fatigue likely contributes to this fatigue was moderately associated with raising the topic problem. The National Comprehensive Cancer Network of psychological issues. However, when data were con- has defined fatigue as “a distressing, persistent, subjec - trolled for psychological issues, fatigue remained statisti- tive sense of physical, emotional, and/or cognitive tired- cally significant. As for other previously reported studies ness or exhaustion related to cancer or cancer treatment, [3], we cannot discern the causality between fatigue that is not proportional to recent activity and interferes and depression. Nevertheless, a simple form such as the with usual functioning” [28]. A similar description was one used in our study may draw attention to both top- used in our form. Although fatigue was not the main ics, revealing the nature of the complaints and guiding issue studied in this investigation and the questionnaire proper interventions. had not been validated for measuring fatigue, patient Although fatigue awareness and the number of stud- undergoing MMT (including chemotherapy), raised the ies on the issue have increased in recent years, a focus on topic of “fatigue-like complaints” significantly more often fatigue has not yet become routine during clinical follow- than patients who received only SRT. Patients wanting up [32]. According to the present findings, this practice to discuss fatigue does not directly translate to a conclu- should be adopted, especially in sarcoma patients who sion that the patients actually had fatigue. However, our have received chemotherapy. results imply that fatigue may be more prevalent in sar- Pain (29%) and mobility (23%) were important topics to coma patients who have received chemotherapy as part discuss for the patients. The patients in the present study of their treatment. This is further reinforced by our find - attended orthopedic and abdominal sarcoma surgeons’ ing that BS patients raised the fatigue topic significantly outpatient clinics in addition to our outpatient clinic. more often than patients with STS. BS patients usu- Hence, we cannot exclude that the patients focused ally undergo more and longer chemotherapy than STS on other topics at these oncological outpatient clinics patients [10, 11], as was seen also in our cohort. When and raised mobility topics more frequently with their Hompland et al. Clin Sarcoma Res (2020) 10:2 Page 9 of 10 Funding surgeons. Interestingly, there were no statistically signifi - This study was funded by the Norwegian Radium Hospital Research Founda- cant differences in the use of the form between genders. tion, Grant SP 2512, and the Radium Hospital Foundation, Grant 175009. Whether the late effects of sarcoma treatment are uni - Availability of data and materials versal to both genders cannot be answered by our study. The datasets generated during and/or analyzed during the current study are There was, however, a trend toward males using “no available from the corresponding author on reasonable request. topic to discuss” more frequently than females. In a larger Ethics approval and consent to participate patient cohort, this trend may have reached significance. This study was approved by the local data protection officer, and informed There are some limitations to the present study. As consent was obtained from all patients. previously mentioned, the form used to score the late Consent for publication effects among patients and to facilitate communication Not applicable. between the clinician and the patient had not been vali- dated. Since this was a pilot study integrated into a busy Competing interests The authors declare that they have no competing interests. oncology practice, we chose to present the patients with a simple form. The majority of our patients responded to Author details the form, and its use was manageable for the clinicians Department of Oncology, Norwegian Radium Hospital, Oslo University Hos- pital, Nydalen, P.O. Box 4953, Oslo 0424, Norway. Department of Interdiscipli- given the time available. To properly report on the issue nary Health Sciences, Institute of Health and Society, University of Oslo, Oslo, of fatigue from a methodological perspective, a validated Norway. Department of Health and Care Sciences, Faculty of Health Sciences, questionnaire [33] to score the symptoms and severity of UiT The Arctic University of Norway, Tromsø, Norway. Institute of Clinical Medicine, University of Oslo, Oslo, Norway. fatigue would have been preferred. Due to the sample size and limited power, analyses of the interactions among Received: 28 October 2019 Accepted: 16 December 2019 the topics were not performed. The statistical power of the study was limited by the relatively small number of patients within the groups, implying a risk of type II sta- tistical errors. Despite these limitations, we believe that References 1. Foster C, Wright D, Hill H, et al. Psychosocial implications of living 5 years our data accurately represent the clinical experiences of a or more following a cancer diagnosis: a systematic review of the research busy oncological outpatient clinic. evidence. Eur J Cancer Care. 2009;18(3):223–47. 2. Treanor C, Donnelly M. 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Clinical Sarcoma ResearchSpringer Journals

Published: Jan 16, 2020

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