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/lp/jmir-publications/electronic-health-diary-campaigns-to-complement-longitudinal-pDiT6CZ6eh
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- JMIR Publications
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- Copyright © The Author(s). Licensed under Creative Commons Attribution cc-by 4.0
- ISSN
- 2291-5222
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- 10.2196/38709
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Abstract
Background: Electronic health diaries hold promise in complementing standardized surveys in prospective health studies but are fraught with numerous methodological challenges. Objective: The study aimed to investigate participant characteristics and other factors associated with response to an electronic health diary campaign in persons with multiple sclerosis, identify recurrent topics in free-text diary entries, and assess the added value of structured diary entries with regard to current symptoms and medication intake when compared with survey-collected information. Methods: Data were collected by the Swiss Multiple Sclerosis Registry during a nested electronic health diary campaign and during a regular semiannual Swiss Multiple Sclerosis Registry follow-up survey serving as comparator. The characteristics of campaign participants were descriptively compared with those of nonparticipants. Diary content was analyzed using the Linguistic Inquiry and Word Count 2015 software (Pennebaker Conglomerates, Inc) and descriptive keyword analyses. The similarities between structured diary data and follow-up survey data on health-related quality of life, symptoms, and medication intake were examined using the Jaccard index. https://mhealth.jmir.org/2022/10/e38709 JMIR Mhealth Uhealth 2022 | vol. 10 | iss. 10 | e38709 | p. 1 (page number not for citation purposes) XSL FO RenderX JMIR MHEALTH AND UHEALTH Sieber et al Results: Campaign participants (n=134; diary entries: n=815) were more often women, were not working full time, did not have a higher education degree, had a more advanced gait impairment, and were on average 5 years older (median age 52.5, IQR 43.25-59.75 years) than eligible nonparticipants (median age 47, IQR 38-55 years; n=524). Diary free-text entries (n=632; participants: n=100) most often contained references to the following standard Linguistic Inquiry and Word Count word categories: negative emotion (193/632, 30.5%), body parts or body functioning (191/632, 30.2%), health (94/632, 14.9%), or work (67/632, 10.6%). Analogously, the most frequently mentioned keywords (diary entries: n=526; participants: n=93) were “good,” “day,” and “work.” Similarities between diary data and follow-up survey data, collected 14 months apart (median), were high for health-related quality of life and stable for slow-changing symptoms such as fatigue or gait disorder. Similarities were also comparatively high for drugs requiring a regular application, including interferon beta-1a (Avonex) and glatiramer acetate (Copaxone), and for modern oral therapies such as fingolimod (Gilenya) and teriflunomide (Aubagio). Conclusions: Diary campaign participation seemed dependent on time availability and symptom burden and was enhanced by reminder emails. Electronic health diaries are a meaningful complement to regular structured surveys and can provide more detailed information regarding medication use and symptoms. However, they should ideally be embedded into promotional activities or tied to concrete research study tasks to enhance regular and long-term participation. (JMIR Mhealth Uhealth 2022;10(10):e38709) doi: 10.2196/38709 KEYWORDS registry; multiple sclerosis; digital health; electronic health diary; diary; participation; adherence; patient-reported outcome; natural language processing; unstructured text Objectives Introduction In light of these challenges, we aimed to explore the applicability and usability of electronic health diary data collected by the Background Swiss Multiple Sclerosis Registry (SMSR) during a week-long Electronic health diaries are consumer- or patient-facing health diary campaign. Specifically, we aimed to compare the electronic tools to record personal health-relevant information characteristics of the participants in the health diary campaign prospectively [1]. Flexibility and ease of use make electronic with eligible nonparticipants of the SMSR campaign (aim 1). health diaries an attractive option for self-learning, patient Furthermore, we intended to analyze the content of the diary empowerment, and health care management support [2]. free-text field section by applying 2 different natural language Electronic health diaries are also used in research contexts where processing methods (aim 2). Finally, we aimed to evaluate the they offer more timely or even real-time reporting of diary-collected health-related quality of life, symptoms, and health-related indicators and can thus meaningfully complement treatment information by comparing it with corresponding medical records or retrospective questionnaires [1]. In addition, survey-based information (aim 3). free-text entries of diary studies can offer a window into a person’s emotions [3-6] and daily-life contexts. These investigations were guided by several literature- and research-based assumptions. Recent research has revealed that Electronic health diaries have also found application in multiple younger age is linked to a more frequent adoption of mobile sclerosis (MS) research, where they have been used as logbooks health technologies [ 1,2]. Therefore, we hypothesized that the of physical activity sessions [7] or to record disability- or electronic health diary campaign participants would be younger health-related quality of life scores [8-10]. Furthermore, health than nonparticipants with access to the registry’s web-based diaries have also been explored in the context of platform. Furthermore, although there is usually very good self-management improvement programs for persons with MS intraindividual consistency of stable symptoms, treatments, or [11,12], as well as to monitor and enhance medication adherence side effects among semiannual surveys [16,17], the health diary to disease-modifying treatments (eg, through reminder may be better able to capture dynamic symptoms and treatment functionalities) [13,14]. effects in a more comprehensive and fine-grained fashion. However, numerous methodological and user challenges have been highlighted [1,15]. First, keeping health diaries over Methods extended periods (ie, months or even years) demands continual intrinsic and extrinsic motivation, as well as substantial support Study Context from study investigators [1,15]. Second, studies relying on The electronic health diary data were collected by the SMSR free-text entries require special analytical methods [1,15] that as part of a nested campaign entitled “A week in the life of involve substantial manual data preprocessing. Finally, to persons with MS,” which ran from March 9, 2019, to March increase compliance, the number of diary questions needs to be 17, 2019. The SMSR is a nationwide, patient-centered registry relatively small—thus limiting the depth of health information for persons with MS (trial registration: ClinicalTrials.gov that can realistically be collected (eg, regarding a person’s NCT02980640) [18,19]. The registry was launched in June 2016 disease history). as a collaboration between the Swiss Multiple Sclerosis Society and the University of Zurich with the aim to create a https://mhealth.jmir.org/2022/10/e38709 JMIR Mhealth Uhealth 2022 | vol. 10 | iss. 10 | e38709 | p. 2 (page number not for citation purposes) XSL FO RenderX JMIR MHEALTH AND UHEALTH Sieber et al patient-centered registry for adult persons with MS living in positive and negative experiences as well as self-management Switzerland. strategies. Since its launch in 2016, the SMSR has been collecting and The campaign included different communication activities updating standard information on MS symptoms, treatment (Multimedia Appendix 3, red numbers). First, a general histories, and health-related quality of life in semiannual surveys announcement was issued by email on January 28, 2019. One [19]. As of July 13, 2019, a total of 2350 participants had month later (February 28, 2019), a personal invitation was sent contributed data to the SMSR. Participants can either enroll for by email to all web-based participants, followed by a reminder digital participation (approximately 80% of all participants), or on March 8, 2019 (ie, the day before the launch of the they can choose to complete the surveys on paper campaign). A final motivational reminder was sent through (approximately 20%). The baseline assessment has 2 stages. email on March 14, 2019. An announcement and daily campaign First, participants complete a short survey (initial questionnaire) updates were posted on the SMSR website as well as on the that collects basic sociodemographic characteristics and core public website and the Facebook page of the Swiss Multiple data on MS diagnosis, as well as symptom and treatment Sclerosis Society. The daily campaign updates included visual histories. A second, more extensive survey (baseline summaries of different health diary items (average EQ-VAS questionnaire) collects current symptoms and treatments, as score, percentage of participants with a specific mood, the 3 well as detailed information on education, work, health care most frequent symptoms, percentage of users of complementary use, comorbidities, and MS status [18,19]. therapies, and the 3 most frequent complementary therapies). The electronic health diary is a separate feature on the digital Study Population SMSR study platform, available in German, French, and Italian, Of the 1550 SMSR enrollees who had completed the baseline and specifically developed to work on PCs and mobile devices. assessments, 1318 (85.03%) participated through the SMSR The diary was semistructured (Figures S1-S6 in Multimedia web platform (Figure 1). Paper-and-pencil participants were Appendix 1). It contained a free-text field where participants excluded a priori because the health diary was only available could describe their current health status and any other on the web. After the application of inclusion criteria and data information that they deemed relevant. There were no quality checks, we included 96.66% (1274/1318) of the restrictions on the number of characters. In addition, the diary web-based enrollees with baseline assessments completed until included structured questions that mirrored corresponding survey 1 week after the campaign ended (March 26, 2019). This time items from the longitudinal surveys, namely the EQ-5D-5L and frame was chosen because a small number of participants (n=21) the EuroQol visual analog scale (EQ-VAS; 0-100 scale), as well joined the SMSR during the diary campaign but completed the as current MS symptoms (checkboxes) and current use of baseline assessment only a few days after the campaign ended. immunomodulatory and complementary therapies (checkboxes; Of these 1274 enrollees, 658 (51.65%) had completed the next Figures S5 and S6 in Multimedia Appendix 1). Visually, the semiannual survey in the spring of 2020—hereafter follow-up diary was organized as a calendar sheet that allowed survey—that included all standardized assessments from the retrospective entries. diary (health-related quality of life, symptoms, and medication use). Among these 658 enrollees, 134 (20.4%) had made a Description of the Nested Electronic Health Diary nonempty free-text entry in the electronic health diary collected Campaign between February 27, 2019 (1 day before the invitation to the To promote the release of the electronic health diary, the SMSR campaign was emailed), and March 19, 2019 (2 days after the launched a campaign entitled “A week in the life of persons official end of the campaign), including retrospective entries with MS,” which ran from March 9, 2019, to March 17, 2019. (Multimedia Appendix 4). This analysis time frame was chosen All web-based participants were invited to make daily diary because the first campaign announcement on February 28, 2019, entries in the free-text field and complete the structured had already triggered numerous entries (Multimedia Appendix questions on current symptoms and medication intake 3). Entries for retrospective dates were included if they were (Multimedia Appendix 2). Participants were encouraged to share created during the analysis time frame. https://mhealth.jmir.org/2022/10/e38709 JMIR Mhealth Uhealth 2022 | vol. 10 | iss. 10 | e38709 | p. 3 (page number not for citation purposes) XSL FO RenderX JMIR MHEALTH AND UHEALTH Sieber et al Figure 1. Flowchart of the study population, from the perspective of the completion of the baseline and follow-up surveys (refer to Multimedia Appendix 3 for more detailed information regarding the electronic health diary entries). Statistical Analyses Measures Baseline characteristics of diary campaign participants (that is, We analyzed 3 different types of data items that were collected persons with at least one valid health diary entry during the both in the diary and the follow-up survey. The first data item analysis time frame) and nonparticipants were compared consisted of textual diary entries describing notable daily events descriptively (aim 1). Continuous data were analyzed by or current physical and mental well-being. Only German diary medians and IQRs and categorical information by frequency entries containing at least one word were considered for the counts and percentages. Using visual plots, we analyzed the analysis. The second analysis included the EQ-5D-5L index frequency and patterns of diary use over time, intending to learn (derived from French reference value sets [20-22]) and the more about the impact of reminders on participants’ behavior. EQ-VAS. The third type of data pertained to current symptoms and the use of immunomodulatory medications [20,23]. For aim 2, the content of diary text entries was analyzed using the Linguistic Inquiry and Word Count (LIWC) 2015 software In the diary and in the follow-up survey, participants were asked (Pennebaker Conglomerates, Inc) [24,25] using a German to indicate their current MS symptoms and the MS symptoms dictionary [26]. On the basis of this dictionary, the LIWC they had experienced within the last 12 months, respectively, program scores the texts according to 118 word attributes and from the following list: visual impairments, speech disorders, categories by dividing the number of words belonging to a swallowing difficulties (dysphagia), weakness, signs of specific attribute or category by the number of words within a paralysis, fatigue, paresthesia (eg, deafness and tingling), text entry to standardize for diary entry length [24]. The dizziness, pain, gait disorder, vestibular disorders, bladder following seven categories related to health and personal disorders (eg, bladder weakness), spasms (muscle cramps), experience were selected for further inspection: (1) health, (2) convulsions and tics, tremor, intestinal disorders (eg, body, (3) family, (4) friends, (5) work, (6) positive emotions constipation), epileptic convulsions, sexual disorders, memory (eg, happy, good, and love), and (7) negative emotions (eg, disorders, depression, concentration problems, problems with sadness, anger, and fear). Using these 7 word categories, we spatial orientation, affective lability or lack of control over calculated the percentage of entries containing at least one emotions, or other unspecified symptoms. category-specific keyword across all diary entries. In addition, Any current use of an immunomodulatory MS drug (diary and we analyzed an LIWC-integrated summary score for emotional follow-up survey) and use of an immunomodulatory MS drug tone by plotting its distribution across all diary entries in a within the last 6 months (follow-up survey) were collected based histogram. The LIWC-generated emotional tone score represents on the following medication list: teriflunomide (Aubagio), the overall emotional tone of a text, ranging from 0 (negative) interferon beta-1a (Avonex), interferon beta-1b (Betaferon), to 100 (positive). The score is computed based on the difference glatiramer acetate (Copaxone), cyclophosphamide (Endoxan), between dictionary-based positive and negative emotion scores, interferon beta-1b (Extavia), fingolimod (Gilenya), azathioprine but details of this proprietary algorithm are not publicly available (Imurek), alemtuzumab (Lemtrada), rituximab (MabThera), [24,27]. laquinimod (Nerventra), mitoxantrone (Novantron), ocrelizumab Furthermore, German diary text entries containing at least 10 (Ocrevus), peginterferon beta-1a (Plegridy), interferon beta-1a words were analyzed descriptively by visualizing them as a (Rebif), cyclosporine (Sandimmun), tetracosactide (Synacthen), word cloud of the 100 most frequent words in Python (version dimethyl fumarate (Tecfidera), natalizumab (Tysabri), and other 3.7; Python Software Foundation) in the Spyder integrated unspecified medications. development environment (version 4.1.5). The text entries were https://mhealth.jmir.org/2022/10/e38709 JMIR Mhealth Uhealth 2022 | vol. 10 | iss. 10 | e38709 | p. 4 (page number not for citation purposes) XSL FO RenderX JMIR MHEALTH AND UHEALTH Sieber et al prepared for the visualization in several preprocessing steps. Results Stop words (ie, words without a specific meaning such as and or the) were removed using an open-source German stop word Study Populations and Diary Use list [28]; numerals and punctuation marks were removed as After we had applied our inclusion and exclusion criteria, our well. The remaining words were filtered to retain only nouns, study population comprised 658 persons with MS, of whom adjectives, and verbs. Words with the same meaning were 134 (20.4%) had used the electronic health diary between replaced manually by 1 unique word (eg, the word work replaced February 27, 2019, and March 19, 2019 (Figure 1). During this the following words: occupation, job, company, office, period, 815 nonempty, unique diary entries written in German workplace, work hours, work colleagues, etc). The words were (n=632, 77.5%), French (n=135, 16.6%), and Italian (n=48, then lemmatized using the Python library spaCy (version 2.2.2) 5.9%) were collected (Multimedia Appendix 4). [29]. Lemmatization refers to the removal of inflectional endings to obtain the dictionary form of a word [30]. Vowels followed The median time span between the last diary entry written by by an e (such as oe) were replaced by a vowel with an umlaut each diary campaign participant and the follow-up survey was (in this specific case, ö) as commonly used in German. Capital 14 (IQR 13-15) months. letters were then replaced by lowercase letters. Finally, all Participant Characteristics lemmatized entries were translated into English using DeepL Pro (DeepL SE). Characteristics of the SMSR web-based study enrollees who participated in the campaign by completing at least one Moreover, we evaluated the individual-level similarity of electronic health diary entry (n=134; henceforth referred to as health-related quality of life indices (EQ-5D-5L and EQ-VAS), participants) and those who did not (n=524; henceforth referred symptoms, and medication use between the structured diary to as nonparticipants) are compared in Table 1. The median data and follow-up survey data (aim 3). Similarity was expressed age of the participants (52.5, IQR 43.25-59.75 years) was higher by the Jaccard index, which reflects the proportion of persons than that of the nonparticipants (47, IQR 38-55 years). Of the with the concurrent mention of a specific attribute value (eg, a 134 participants, 101 (75.4%) were women, whereas of the 524 symptom) in the diary and the follow-up survey (overlap), nonparticipants, 356 (67.9%) were women. The median time divided by the number of persons with at least one mention of since the diagnosis of MS was 9 (IQR 4-19 for participants and the same attribute value in either the diary or the follow-up IQR 4-16 for nonparticipants) years for both groups. Persons survey (union) [31,32]. The Jaccard index was chosen over with primary progressive MS (PPMS) and secondary progressive standard percentages because it is less affected by the rarity of MS (SPMS) tended to be more represented among participants an attribute value. In case a participant had several complete (PPMS: 18/134, 13.4%; SPMS: 32/134, 23.9%) than among health diary entries, the health-related quality of life indices of nonparticipants (PPMS: 50/524, 9.5%; SPMS: 79/524, 15.1%). the closest follow-up survey were used for the similarity In addition, the participants’ group contained proportionally analyses. The diary-based categorical symptom and medication fewer persons in the lowest Self-Reported Disability Status use variables were compared with similar follow-up survey Scale stratum (84/134, 62.7%) than the nonparticipants’ group information on symptoms and medication use. The continuous (381/524, 72.7%). EQ-5D-5L and EQ-VAS scores were dichotomized using median splits to calculate the Jaccard indices. The respective The nonparticipants’ group comprised a somewhat larger medians were computed from the follow-up survey of all percentage of persons with higher professional education included SMSR participants (n=658). (including with an applied university or university degree; 250/524, 47.7%, vs 57/134, 42.5%, for participants). However, All descriptive analyses were conducted in R (version 4.0.3), there were fewer people working >40% of weekly working using the RStudio integrated development environment (version hours among the participants (45/134, 33.6%, vs 252/524, 1.4.1103). Text preprocessing and word cloud visualization 48.1%, for nonparticipants). Nonparticipants seemed to talk were performed using Python (version 3.7) in the Spyder more openly about their MS with their relatives (485/524, integrated development environment (version 4.1.5). The 92.5%, vs 116/134, 86.6%, for participants). dictionary-based text categorizations were performed using the LIWC software [24,25]. All text analyses were conducted using Regarding symptoms experienced within the last 12 months, the original German text entries, and the results were participants reported a higher percentage for the 10 most subsequently translated into English for presentation using frequent symptoms. The largest differences in percentages were DeepL Pro. observed for the following symptoms: gait disorder (52/134, 38.8%, vs 138/524, 26.3%, for nonparticipants), spasms (45/134, Ethics Approval 33.6%, vs 119/524, 22.7%, for nonparticipants), and bladder The SMSR has been approved by the responsible ethics disorders (40/134, 29.9%, vs 109/524, 20.8%, for committee (Zurich Cantonal Ethics Committee; study number nonparticipants). Furthermore, a higher proportion of diary PB-2016-00894), and informed consent was obtained from all campaign participants reported no use of a disease-modifying participants. drug within the last 6 months (53/134, 39.6%, vs 156/524, 29.8%, for nonparticipants). The full list of symptoms and disease-modifying medications is available in Multimedia Appendix 5. https://mhealth.jmir.org/2022/10/e38709 JMIR Mhealth Uhealth 2022 | vol. 10 | iss. 10 | e38709 | p. 5 (page number not for citation purposes) XSL FO RenderX JMIR MHEALTH AND UHEALTH Sieber et al Table 1. Characteristics of the study population and their corresponding P values (significance level: .05; N=658). Characteristics Participants in health diary campaign (n=134) Nonparticipants (n=524) P value Age (years), median (IQR) 52.5 (43.25-59.75) 47 (38-55) <.001 Sex, n (%) Female 101 (75.4) 356 (67.9) Male 33 (24.6) 168 (32.1) Language, n (%) <.001 German 100 (74.6) 433 (82.6) French 25 (18.7) 73 (13.9) Italian 9 (6.7) 18 (3.5) d b 9 (4-19) 9 (4-16) MS duration (years), median (IQR) .17 MS type, n (%) <.001 2 (1.5) 10 (1.9) CIS 18 (13.4) 50 (9.5) PPMS 79 (59) 352 (67.2) RRMS Transition 3 (2.2) 16 (3.1) 32 (23.9) 79 (15.1) SPMS Missing information 17 (3.2) N/A Marital status, n (%) <.001 Unmarried 43 (32.1) 174 (33.2) Registered partnership or married 71 (53) 273 (52.1) Separated or divorced 17 (12.7) 59 (11.3) Widowed 1 (0.7) 8 (1.5) Missing information 2 (1.5) 10 (1.9) Education, n (%) Partial or completed mandatory schooling 3 (2.2) 8 (1.5) Apprenticeship or qualification to study at university level 68 (50.8) 250 (47.7) (Matura diploma) Higher professional education, applied university, or uni- 57 (42.5) 250 (47.7) versity Other 1 (0.8) 7 (1.4) Missing information 5 (3.7) 9 (1.7) Work situation or work percentage, n (%) Not working 63 (47) 184 (35.1) 1% to 40% 22 (16.4) 69 (13.2) 41% to 80% 27 (20.2) 138 (26.3) 81% to full time 18 (13.4) 114 (21.8) Missing information 4 (3) 19 (3.6) j c Talk about MS with... .87 ...relatives 116 (86.6) 485 (92.6) ...friends 109 (81.3) 412 (78.6) ...boss 48 (35.8) 179 (34.2) https://mhealth.jmir.org/2022/10/e38709 JMIR Mhealth Uhealth 2022 | vol. 10 | iss. 10 | e38709 | p. 6 (page number not for citation purposes) XSL FO RenderX JMIR MHEALTH AND UHEALTH Sieber et al Characteristics Participants in health diary campaign (n=134) Nonparticipants (n=524) P value ...work colleagues 46 (34.3) 189 (36.1) ...leisure-time partners 36 (26.9) 131 (25) ...other 7 (5.2) 23 (4.4) ...nobody 6 (4.5) 13 (2.5) k c SRDSS score, n (%) .02 0 to 3.5 84 (62.7) 381 (72.7) 4 to 6.5 37 (27.6) 90 (17.2) ≥7 13 (9.7) 39 (7.4) Missing information N/A 14 (2.7) j,l c Ten most frequent symptoms within the last 12 months , n (%) .42 None 50 (37.3) 227 (43.3) Fatigue 57 (42.5) 210 (40.1) Gait disorder 52 (38.8) 138 (26.3) Paresthesia (eg, numbness and tingling) 50 (37.3) 187 (35.7) Spasms (muscle cramps) 45 (33.6) 119 (22.7) Vestibular disorders 43 (32.1) 135 (25.8) Weakness 40 (29.9) 129 (24.6) Pain 40 (29.9) 143 (27.3) Bladder disorders (eg, bladder weakness) 40 (29.9) 109 (20.8) Concentration problems 35 (26.1) 127 (24.2) Intestinal disorders (eg, constipation) 29 (21.6) 83 (15.8) Other 64 (47.8) 193 (36.8) j,l c Ten most frequent disease-modifying medications within the last 6 months , n (%) .20 None 53 (39.6) 156 (29.8) Ocrelizumab (Ocrevus) 28 (20.9) 87 (16.6) Fingolimod (Gilenya) 15 (11.2) 90 (17.2) Dimethyl fumarate (Tecfidera) 10 (7.5) 54 (10.3) Interferon beta-1a (Rebif) 6 (4.5) 19 (3.6) Glatiramer acetate (Copaxone) 6 (4.5) 18 (3.4) Interferon beta-1b (Betaferon) 5 (3.7) 14 (2.7) Teriflunomide (Aubagio) 5 (3.7) 15 (2.9) Natalizumab (Tysabri) 3 (2.2) 40 (7.6) Rituximab (MabThera) 3 (2.2) 15 (2.9) Interferon beta-1a (Avonex) 2 (1.5) 10 (1.9) https://mhealth.jmir.org/2022/10/e38709 JMIR Mhealth Uhealth 2022 | vol. 10 | iss. 10 | e38709 | p. 7 (page number not for citation purposes) XSL FO RenderX JMIR MHEALTH AND UHEALTH Sieber et al Characteristics Participants in health diary campaign (n=134) Nonparticipants (n=524) P value Other 1 (0.7) 10 (1.9) Comparison between participants in the Swiss Multiple Sclerosis Registry electronic health diary campaign (defined by having at least one valid diary entry; column 2) and nonparticipants (column 3). Two-tailed t test conducted. Chi-square test conducted. MS: multiple sclerosis. CIS: clinically isolated syndrome. PPMS: primary progressive multiple sclerosis. RRMS: relapsing-remitting multiple sclerosis. SPMS: secondary progressive multiple sclerosis. N/A: not applicable. Multiple answers possible. SRDSS: Self-Reported Disability Status Scale. Full list of symptoms and disease-modifying medications available in Multimedia Appendix 5. entries (n=130) of the whole observation period. In addition, Health Diary Use Patterns the electronic health diary was used more intensively during The use of the electronic health diary was monitored over 21 the official health diary campaign period (striped bars in days between February 27, 2019, and March 19, 2019 Multimedia Appendix 3). (Multimedia Appendix 3). Over these 21 days, a total of 815 As shown in Table 2, 23.1% (31/134) of the participants wrote unique electronic health diary entries were collected from 134 only 1 entry in the diary, and 11.2% (15/134) wrote 2. Moreover, diary campaign participants. Of note, more health diary entries 15.7% (21/134) of the participants had ≥10 entries (reflecting were collected on days when email invitations or reminders ≥1 entry every 2 days). The highest number of entries written were sent than on the adjacent days; for example, the final by 1 person was 32 (including retrospective entries made during reminder sent on March 14, 2019 (bar marked by a red numeral the analysis time frame). Multimedia Appendix 6 summarizes 3 in Multimedia Appendix 3), displayed the largest number of the completeness of health diary entries. Table 2. Frequency counts and percentages of participants totalizing a certain number of diary health entries written during the campaign (N=134). Number of entries in the health diary per participant Participants, n (%) 1 31 (23.1) 2 15 (11.2) 3 6 (4.5) 4 5 (3.7) 5 6 (4.5) 6 6 (4.5) 7 9 (6.7) 8 16 (11.9) 9 19 (14.2) 10 6 (4.5) 11 5 (3.7) 12 2 (1.5) 13 1 (0.7) 15 2 (1.5) 17 1 (0.7) 18 1 (0.7) 19 1 (0.7) 20 1 (0.7) 32 1 (0.7) https://mhealth.jmir.org/2022/10/e38709 JMIR Mhealth Uhealth 2022 | vol. 10 | iss. 10 | e38709 | p. 8 (page number not for citation purposes) XSL FO RenderX JMIR MHEALTH AND UHEALTH Sieber et al used to create a 100-word word cloud (Multimedia Appendix Content Analysis of the Textual Diary Data 7; refer to Multimedia Appendix 8 for the frequency of the 25 The 134 electronic health diary campaign participants provided most common words). As shown in Multimedia Appendix 7 a total of 815 electronic health diary entries (in German: n=632, and Multimedia Appendix 8, the words “good” and “day” occur 77.5%; in French: n=135, 16.6%; and in Italian: n=48, 5.9%). most often, followed by “work,” “up,” “go,” “sleep,” and “tired.” For the subsequent analysis, we only used the German health Among the 25 most frequent words, some refer to time, diary entries, provided by 100 participants. The emotional scores including “day,” “evening,” “morning,” “hour,” “time,” and of the 632 diary entries were low overall, reflecting negative “afternoon.” Other words pertained to activities or movement, emotions such as very anxious, sad, or hostile tone [33]. Of the such as “work,” “go,” “walk,” “make,” and “errand.” Several 632 diary entries, 163 (25.8%) scored between 0 and 10, and frequent words also related to body parts, physical well-being, 420 (66.5%) scored between 20 and 30. Furthermore, positive and health issues; for example, “tired,” “leg,” “pain,” “therapy,” emotions were expressed in only 7.6% (48/632) of the entries, and “feel.” Although comparatively fewer words were associated whereas words related to negative emotions were used in 30.5% with social contacts, some were very common in diary entries, (193/632) of the entries (Table 3). Other frequent LIWC-based such as “contact” or “family.” A word cloud and the frequency topic categories pertained to the body (191/632, 30.2%), health of the most common words for each MS type (ie, PPMS, (94/632, 14.9%), and work (67/632, 10.6%). relapsing-remitting multiple sclerosis, transition, and SPMS) Of the 632 German electronic health diary entries, 526 (83.2%; are available in Multimedia Appendix 9. written by 93 participants) contained at least 10 words and were Table 3. Frequency counts and percentages of the diary entries containing relevant Linguistic Inquiry and Word Count word categories (N=632). Characteristics Values, n (%) Negative emotion 193 (30.5) Body 191 (30.2) Health 94 (14.9) Work 67 (10.6) Positive emotion 48 (7.6) Friends 10 (1.6) Family 8 (1.3) problems displayed comparatively lower Jaccard indices (<0.4), Similarities Between Structured Electronic Health despite being reported quite frequently (n>45; refer to the Diary Data and Questionnaire-Based Data column Union in Table 4 and the Ten most frequent symptoms The responses to the electronic health diary and the follow-up within the last 12 months section in Table 1) and at least once survey exhibited several notable differences and similarities in the diary and the survey. The injectable immunomodulatory quantified by the Jaccard index (Table 4). The EQ-5D-5L drugs interferon beta-1a (Avonex) and glatiramer acetate (Jaccard indices: 0.73 and 0.63 below and above the median, (Copaxone), as well as the oral drugs fingolimod (Gilenya) and respectively) and the EQ-VAS (Jaccard indices: 0.59 and 0.49, teriflunomide (Aubagio), exhibited the highest similarities across respectively) presented the highest Jaccard indices. Furthermore, both assessment methods (Jaccard indices between 0.5 and 1; the electronic health diary and the follow-up survey methods refer to Multimedia Appendix 10 for the complete list of converged for the evaluation of gait disorder, signs of paralysis, disease-modifying medications). Of note, despite currently being and fatigue (Jaccard indices: 0.5, 0.5, and 0.49, respectively). used frequently, ocrelizumab (Ocrevus) was not mentioned in By contrast, several symptoms, including pain, vestibular the diary. disorder, weakness, spasms, bladder disorders, and concentration https://mhealth.jmir.org/2022/10/e38709 JMIR Mhealth Uhealth 2022 | vol. 10 | iss. 10 | e38709 | p. 9 (page number not for citation purposes) XSL FO RenderX JMIR MHEALTH AND UHEALTH Sieber et al Table 4. Similarity between diary and follow-up survey information on health-related quality of life, symptoms, and medication use provided by 134 electronic health diary campaign participants. Characteristics Overlap Union Jaccard index EQ-5D-5L EQ-5D-5L: ≤0.71 (overall median) 52 71 0.73 EQ-5D-5L: >0.71 33 52 0.63 EQ-VAS EQ-VAS: ≤80 (overall median) 34 58 0.59 EQ-VAS: >80 23 47 0.49 Symptoms Gait disorder 33 66 0.50 Signs of paralysis 12 24 0.50 Fatigue 39 80 0.49 Paresthesia (eg, numbness and tingling) 34 73 0.47 Tremor 8 18 0.44 Intestinal disorders (eg, constipation) 14 34 0.41 Weakness 22 58 0.38 Vestibular disorders 23 62 0.37 Pain 22 63 0.35 Affective lability and lack of control over emotions 5 15 0.33 Spasms (muscle cramps) 18 56 0.32 Memory disorders 9 28 0.32 Bladder disorders (eg, bladder weakness) 16 51 0.31 Convulsions and tics 5 17 0.29 Sexual disorders 5 19 0.26 Visual impairments 7 30 0.23 Problems with spatial orientation 7 30 0.23 Dizziness 7 32 0.22 Speech disorders 4 20 0.20 Swallowing difficulties (dysphagia) 3 15 0.20 Depression 3 16 0.19 Concentration problems 7 46 0.15 Other 0 10 0 Epileptic convulsions 0 1 0 Ten most frequent disease-modifying medications Interferon beta-1a (Avonex) 2 2 1 Glatiramer acetate (Copaxone) 5 7 0.71 Fingolimod (Gilenya) 12 21 0.57 Teriflunomide (Aubagio) 4 8 0.50 Interferon beta-1b (Betaferon) 2 5 0.40 Dimethyl fumarate (Tecfidera) 1 32 0.03 Ocrelizumab (Ocrevus) 0 36 0 Other 0 33 0 Interferon beta-1a (Rebif) 0 6 0 https://mhealth.jmir.org/2022/10/e38709 JMIR Mhealth Uhealth 2022 | vol. 10 | iss. 10 | e38709 | p. 10 (page number not for citation purposes) XSL FO RenderX JMIR MHEALTH AND UHEALTH Sieber et al Characteristics Overlap Union Jaccard index Natalizumab (Tysabri) 0 6 0 Rituximab (MabThera) 0 3 0 The Jaccard index was used to measure the similarities (reporting overlap) among the different sources (0=no similarity and 1=maximum similarity). The column Overlap represents the number of participants with overlapping reports in the diary and in the follow-up survey. The column Union represents the total number of participants who reported a specific data item at least once in the diary or the follow-up survey collecting the symptoms experienced within the last 12 months and the medication used within the last 6 months. The column Jaccard index represents the quotient of the Overlap values and the Union values. The EQ-5D-5L index and the EuroQol visual analog scale index were dichotomized using the respective medians of all included Swiss Multiple Sclerosis Registry enrollees with completed follow-up survey (n=658). EQ-VAS: EuroQol visual analog scale. The full list of disease-modifying medications is available in Multimedia Appendix 10. and work, as confirmed by the LIWC and word cloud analytic Discussion approaches. Moreover, the frequent mention of words such as “sleep” or “tired” corresponds well with frequent reports of Principal Findings fatigue in the diary as well as in the SMSR follow-up survey On the basis of a health diary campaign nested into the SMSR, (Table 1). our study sought to explore the factors associated with electronic A substantial number of participant reports had a negative health diary use as well as the added value of diary entries emotional coloration and were referring to, for example, the vis-à-vis survey-collected information. By comparing the adverse effects of MS on their body and daily life activities. characteristics of 134 health diary campaign participants with Indeed, keywords from the LIWC categories negative emotion those of 524 nonparticipants, our study revealed that women, and body appeared in the same proportion of diary entries and persons with a more advanced disease state, those with a lower were thus possibly co-occurring. Diary participants seemed to work percentage, or those without higher education (eg, a rather express concerns—possibly about their disease affecting university degree) were more likely to devote time to the their body and their active life. Whereas a larger proportion of electronic health diary. the nonparticipants talk about MS to their relatives, diary Contrary to our initial expectations, electronic health diary participants seemed to confide their worries in the diary [36]. participants were on average 5 years older than the Of further note, the comparison of structured information from nonparticipants, more likely to be women, less likely to have the electronic health diary and the follow-up survey generally completed higher education, and more frequently had an exhibited good overlaps for health-related quality of life aspects, advanced Self-Reported Disability Status Scale score (≥4). In relatively stable and frequent symptoms, and—to a lesser addition, a larger proportion of participants reported extent—for medications with a frequent intake schedule (eg, experiencing diverse MS symptoms within the last 12 months, injectable or oral drugs). The health-related quality of life index in particular from more strongly hindering symptoms such as EQ-5D-5L revealed the highest overlap, which is consistent fatigue, gait disorder, spasms, and vestibular disorders. Not only with the general notion that this indicator is not very responsive are these symptoms disabling, but they may also lead to a more to smaller health status changes. The more subjective EQ-VAS confined life at home. These findings may seem counterintuitive showed somewhat smaller overlaps, possibly because the at first glance because studies comparing characteristics between EQ-VAS is more responsive to daily fluctuations [9]. The web-based and paper-and-pencil study participants (including Jaccard index was also relatively high for stable or a study from the SMSR) usually found younger age, higher slow-changing symptoms such as gait disorder, signs of education, and less disease severity to be associated with a paralysis, and fatigue. By contrast, the similarity analysis of higher probability of web-based participation [34,35]. However, medication use mostly yielded low Jaccard indices, suggesting this study focused entirely on web-based participants. Thus, the little overlap. Nonetheless, older, established injection therapies stratification by health diary use reflects a further segmentation for relapsing-remitting MS, such as interferon beta-1a (Avonex) of this population. In our analysis, persons with a higher [37] and glatiramer acetate (Copaxone) [38], although not used symptom burden and not working full time, which are two by a large proportion of our study participants, displayed the factors associated with older age, were more likely to contribute highest Jaccard indices, demonstrating little change in to the electronic health diary campaign. This finding overlaps medication. Furthermore, more modern and convenient with an independent SMSR analysis showing that, based on a treatments such as fingolimod (Gilenya) and teriflunomide set of standardized questions, persons with a high affinity for (Aubagio), which are two oral therapies with daily intake for using digital tools for MS management also tended to be older relapsing-remitting MS, also exhibited relatively high Jaccard (but still middle-aged) and to have a higher disease burden indices. Nonetheless, other modern MS drugs administered in (Nittas, unpublished data, March 2022). It can be speculated monthly (natalizumab [Tysabri]) infusions at clinics that an elevated disease burden seems to come with more time demonstrated low Jaccard indices because of the diary at disposal and a stronger desire to tell one’s story as well as to instructions that asked participants for MS medication in the understand one’s disease. previous day only. Furthermore, the frequently used infusion When analyzing the content of health diary entries, participants’ reports mainly addressed themes related to the body, health, https://mhealth.jmir.org/2022/10/e38709 JMIR Mhealth Uhealth 2022 | vol. 10 | iss. 10 | e38709 | p. 11 (page number not for citation purposes) XSL FO RenderX JMIR MHEALTH AND UHEALTH Sieber et al drug ocrelizumab (Ocrevus) was only widely prescribed in excluded group reflects a population with more advanced disease Switzerland after the health diary campaign ended [39]. states and possibly lower digital literacy (Nittas, unpublished data, March 2022). However, similar to our study, earlier To the best of our knowledge, this is the first study to assess investigations also observed that at an early stage of the disease, the similarities between data collected through a web-based persons with MS are less likely to engage in research studies survey and data collected by means of an electronic diary. The (Nittas, unpublished data, March 2022), [46], hypothetically different person and disease characteristics associated with because they are in denial regarding their disease or do not electronic health diary use can help refine the target population entirely realize the scope of it yet. In addition, the distance in for implementing electronic health diary tools in research time between the health diary campaign and the follow-up contexts. Furthermore, the findings suggest that health diaries survey completion was relatively long. Hence, the MS can form a meaningful complement to regular surveys by symptomatology, as well as treatment strategies, may have providing additional insights into daily life topics and timely changed in the meantime (eg, ocrelizumab [Ocrevus] has started updates on health-related quality of life or symptom and to be widely prescribed in Switzerland after the end of the health medication status of persons with MS. Although ecological diary campaign). It is important to mention that the results could momentary assessment research has highlighted the possible be replicated using different comparison data provided by the risk of retrospection bias in retrospectively reporting symptoms SMSR. Future research would benefit from further investigating averaged over longer times [40], subjective perceptions of the added value of such free-text health diaries by comparing illnesses vary strongly and meaningfully across people [41]. entries with standardized instruments of physical and mental Indeed, evaluating subjective views with regard to, for example, well-being assessed in parallel. Furthermore, among the 658 symptoms of people with MS not only adds value to eligible web-based SMSR participants, only a fraction (n=134, standardized assessments pertaining to personalized treatment 20.4%) took part in the diary study, thus limiting the planning but also helps to explain adherence to treatment generalizability of the results. Besides, the vast majority regimens [42]. Moreover, free-text questions as implemented (113/134, 84.3%) of the participants made <1 entry every 2 in our diary can complement regular standardized assessments days in the diary, and 34% (46/134) contributed only once or by providing additional levels of detail. Furthermore, being twice to the diary campaign. This lack of regularity in diary use given the opportunity to report on their experiences in their own was also a limitation to our study. The implementation of a words is often appreciated by study participants and, as diary with automated reminders [47] might be a promising way suggested by the extensive expressive writing literature, may forward to increase participation [12,14]. Nevertheless, these even be of therapeutical value in itself [43]. Our electronic health limitations observed in our study may also hinder a broader diary combines the known advantages of ecological momentary application of electronic diaries in ecological momentary assessment with the advantage of not restricting answers to assessments. forced, given choices. Therefore, a better understanding of participant needs, The study was also informative on a methodological level. motivational factors, and the effectiveness of incentives is Although the health diary has been part of the SMSR platform urgently needed to enable a broader application and long-term since its launch, voluntary use was very low, on average <1 use of health diaries in health research and disease management. entry per day per participant. By contrast, we noticed that the In addition, in light of recent advances in fields such as natural use of the electronic health diary was enhanced after language processing [48] and speech recognition [49] (eg, motivational emails were sent to the participants. These Hugging Face [50]) based on machine learning or wearable experiences suggest that health diary studies may benefit from sensor technologies (eg, fitness trackers) [42,51,52], future being embedded into a campaign with clear aims and a limited studies should examine how health diaries could be optimally time frame, as revealed by previous studies [44,45]. combined with novel technologies. Strengths and Limitations Conclusions Our study benefited from a large, diverse, well-documented To summarize, our study suggests that health diaries can be a study base for enrollment [18,19]. Moreover, this is the first valuable complement to regular, structured questionnaires in health diary study in MS to use a blend of different analytical the context of MS research. However, they should ideally be approaches (descriptive statistics and natural language embedded into a campaign with motivational activities such as processing) to glean insights into health diary use patterns and email reminders or regular data feedback. Our findings further daily life aspects; for example, closer inspection of diary entries suggest that a topical focus on daily life aspects, health-related revealed novel aspects such as the stress imposed by application quality of life, and stable symptoms elicited more similar procedures for disability insurance or individual coping responses to standardized assessments and were thus less strategies for well-being by persons with MS (not shown). informative than medication diaries. Hence, medication diaries Therefore, diary studies harbor a significant untapped potential for daily dispensed (oral or injectable) drugs may offer for hypothesis generation and inspiration for research topics. opportunities for drug intake compliance tracking and unwanted However, some limitations should be noted. First, our study drug effect occurrence monitoring. excluded persons who preferred paper-and-pencil surveys. This https://mhealth.jmir.org/2022/10/e38709 JMIR Mhealth Uhealth 2022 | vol. 10 | iss. 10 | e38709 | p. 12 (page number not for citation purposes) XSL FO RenderX JMIR MHEALTH AND UHEALTH Sieber et al Acknowledgments The authors are most grateful to all participants of the Swiss Multiple Sclerosis Registry (SMSR) who dedicated their time and thereby made a crucial contribution to this research. The authors would further like to thank the participant board of the SMSR for their contribution to the development and validation of a multiple sclerosis–related dictionary. Furthermore, the authors’ gratitude goes to the Swiss Multiple Sclerosis Society for funding the SMSR and for its continuous support. The members of the SMSR are Bernd Anderseck, PC, Andrew Chan, Claudio Gobbi, Roger Häussler, CPK, Jürg Kesselring (President), Jens Kuhle (Chair of the Clinical and Laboratory Research Committee), Roland Kurmann, Christoph Lotter, Kurt Luyckx, Patricia Monin, Stefanie Müller, Krassen Nedeltchev, CP, Milo A Puhan, Irene Rapold, Anke Salmen, Klaas Enno Stephan, Zina-Mary Manjaly, Claude Vaney (Chair of Patient and Population Research Committee), VvW (Chair of the IT and Data Committee), and CZ. The SMSR is supported by the scientific advisory board of the Swiss Multiple Sclerosis Society. Conflicts of Interest Ente Ospedaliero Cantonale (CZ’s employer) received compensation for CZ’s speaking activities, consulting fees, or research grants from Almirall, Biogen Idec, Bristol Meyer Squibb, Genzyme, Lundbeck, Merck, Novartis, Teva Pharma, and Roche. Multimedia Appendix 1 Electronic health diary of the Swiss Multiple Sclerosis Registry. [DOCX File , 764 KB-Multimedia Appendix 1] Multimedia Appendix 2 Invitation letters to the electronic health diary campaign for the Swiss Multiple Sclerosis Registry participants. [DOCX File , 38 KB-Multimedia Appendix 2] Multimedia Appendix 3 Number of entries made per day in the electronic health diary between February 27, 2019, and March 19, 2019 (N=815). The striped bars (March 9, 2019, to March 17, 2019) correspond to the official health diary campaign period. The red numbers indicate when the Swiss Multiple Sclerosis Society sent emails to its participants: (1) invitation email for the campaign sent out to all Swiss Multiple Sclerosis Registry participants and information released as a news item on the public web page of the Swiss Multiple Sclerosis Society, (2) reminder email sent out to all participants informing them that the campaign was about to start, and (3) motivational email that provided some statistical information about the health diary campaign and reminded participants to contribute. [PNG File , 93 KB-Multimedia Appendix 3] Multimedia Appendix 4 Flowchart of the Swiss Multiple Sclerosis Registry enrollees and the electronic health diary participants. [DOCX File , 432 KB-Multimedia Appendix 4] Multimedia Appendix 5 Full list of the symptoms experienced within the last 12 months and the disease-modifying medications used within the last 6 months. [DOCX File , 41 KB-Multimedia Appendix 5] Multimedia Appendix 6 Completeness of the diary entries. [DOCX File , 38 KB-Multimedia Appendix 6] Multimedia Appendix 7 Word cloud of the 100 most frequent words appearing in the electronic health diary entries of a minimum length of 10 words (n=526). The font size reflects the frequency of the words’ occurrence. [PNG File , 322 KB-Multimedia Appendix 7] Multimedia Appendix 8 Word frequency of the 25 most frequent words of the word cloud. https://mhealth.jmir.org/2022/10/e38709 JMIR Mhealth Uhealth 2022 | vol. 10 | iss. 10 | e38709 | p. 13 (page number not for citation purposes) XSL FO RenderX JMIR MHEALTH AND UHEALTH Sieber et al [DOCX File , 78 KB-Multimedia Appendix 8] Multimedia Appendix 9 Word cloud of 100 words and word frequency of the 25 most frequent words throughout the electronic health diary entries per multiple sclerosis type. 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J Biomed Inform 2018 Jan;77:120-132 [FREE Full text] [doi: 10.1016/j.jbi.2017.12.008] [Medline: 29248628] Abbreviations EQ-VAS: EuroQol visual analog scale LIWC: Linguistic Inquiry and Word Count MS: multiple sclerosis PPMS: primary progressive multiple sclerosis SMSR: Swiss Multiple Sclerosis Registry SPMS: secondary progressive multiple sclerosis Edited by L Buis; submitted 13.04.22; peer-reviewed by PJ Jongen, I Ahn, M Clarysse; comments to author 25.05.22; revised version received 29.07.22; accepted 24.08.22; published 05.10.22 Please cite as: Sieber C, Chiavi D, Haag C, Kaufmann M, Horn AB, Dressel H, Zecca C, Calabrese P, Pot C, Kamm CP, von Wyl V, Swiss Multiple Sclerosis Registry Electronic Health Diary Campaigns to Complement Longitudinal Assessments in Persons With Multiple Sclerosis: Nested Observational Study JMIR Mhealth Uhealth 2022;10(10):e38709 URL: https://mhealth.jmir.org/2022/10/e38709 doi: 10.2196/38709 PMID: ©Chloé Sieber, Deborah Chiavi, Christina Haag, Marco Kaufmann, Andrea B Horn, Holger Dressel, Chiara Zecca, Pasquale Calabrese, Caroline Pot, Christian Philipp Kamm, Viktor von Wyl, Swiss Multiple Sclerosis Registry. Originally published in JMIR mHealth and uHealth (https://mhealth.jmir.org), 05.10.2022. 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 mHealth and uHealth, is https://mhealth.jmir.org/2022/10/e38709 JMIR Mhealth Uhealth 2022 | vol. 10 | iss. 10 | e38709 | p. 16 (page number not for citation purposes) XSL FO RenderX JMIR MHEALTH AND UHEALTH Sieber et al properly cited. The complete bibliographic information, a link to the original publication on https://mhealth.jmir.org/, as well as this copyright and license information must be included. https://mhealth.jmir.org/2022/10/e38709 JMIR Mhealth Uhealth 2022 | vol. 10 | iss. 10 | e38709 | p. 17 (page number not for citation purposes) XSL FO RenderX
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JMIR mHealth and uHealth – JMIR Publications
Published: Oct 5, 2022
Keywords: registry; multiple sclerosis; digital health; electronic health diary; diary; participation; adherence; patient-reported outcome; natural language processing; unstructured text