Understanding Self-Guided Web-Based Educational Interventions for Patients With Chronic Health Conditions: Systematic Review of Intervention Features and Adherence.

BACKGROUND: Chronic diseases contribute to 71% of deaths worldwide every year, and an estimated 15 million people between the ages of 30 and 69 years die mainly because of cardiovascular disease, cancer, chronic respiratory diseases, or diabetes. Web-based educational interventions may facilitate disease management. These are also considered to be a flexible and low-cost method to deliver tailored information to patients. Previous studies concluded that the implementation of different features and the degree of adherence to the intervention are key factors in determining the success of the intervention. However, limited research has been conducted to understand the acceptability of specific features and user adherence to self-guided web interventions. OBJECTIVE: This systematic review aims to understand how web-based intervention features are evaluated, to investigate their acceptability, and to describe how adherence to web-based self-guided interventions is defined and measured. METHODS: Studies published on self-guided web-based educational interventions for people (≥14 years old) with chronic health conditions published between January 2005 and June 2020 were reviewed following the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) Statement protocol. The search was performed using the PubMed, Cochrane Library, and EMBASE (Excerpta Medica dataBASE) databases; the reference lists of the selected articles were also reviewed. The comparison of the interventions and analysis of the features were based on the published content from the selected articles. RESULTS: A total of 20 studies were included. Seven principal features were identified, with goal setting, self-monitoring, and feedback being the most frequently used. The acceptability of the features was measured based on the comments collected from users, their association with clinical outcomes, or device adherence. The use of quizzes was positively reported by participants. Self-monitoring, goal setting, feedback, and discussion forums yielded mixed results. The negative acceptability was related to the choice of the discussion topic, lack of face-to-face contact, and technical issues. This review shows that the evaluation of adherence to educational interventions was inconsistent among the studies, limiting comparisons. A clear definition of adherence to an intervention is lacking. CONCLUSIONS: Although limited information was available, it appears that features related to interaction and personalization are important for improving clinical outcomes and users' experience. When designing web-based interventions, the selection of features should be based on the targeted population's needs, the balance between positive and negative impacts of having human involvement in the intervention, and the reduction of technical barriers. There is a lack of consensus on the method of evaluating adherence to an intervention. Both investigations of the acceptability features and adherence should be considered when designing and evaluating web-based interventions. A proof-of-concept or pilot study would be useful for establishing the required level of engagement needed to define adherence.

Health behaviour changes in partners of women with recent gestational diabetes: a phase IIa trial.

BACKGROUND: We recently demonstrated that a gestational diabetes history in mothers is associated with higher postpartum incident diabetes not only in mothers but also in fathers. In the present study, we examined changes in health behaviours and cardiometabolic profiles in both mothers and partners who participated in a diabetes prevention program within 5 years of a gestational diabetes pregnancy. METHODS: Couples were enrolled into a 13-week program that included 5 half-day group sessions and web/telephone-based support between sessions. It was designed in consultation with patients and previously studied in mothers. We computed mean changes from baseline (95% CI) for physical activity, eating, and sleep measures, and cardiometabolic parameters (fasting and 2-h post glucose load plasma glucose, BMI, blood pressure) in both partners and mothers. RESULTS: Among 59 couples enrolled, 45 partners (76%) and 47 mothers (80%) completed final evaluations. Baseline cardiometabolic measures averaged within normal limits. Similar to mothers, partners increased physical activity (+ 1645 steps/day, 95%CI 730, 2561; accelerometer assessed moderate-to-vigorous physical activity + 36.4 min/week, 95% CI 1.4, 71.4) and sleep duration (+ 0.5 h/night, 95% CI 0.1, 0.9) and reduced the sodium-to-potassium ratio of food intake (- 0.09 95% CI -0.19, - 0.001). No conclusive changes were observed in glucose measures or insulin resistance; in analyses combining mothers and partners, systolic blood pressure decreased (- 2.7 mmHg, 95% CI -4.4, - 1.0). CONCLUSIONS: Partners and mothers demonstrated improved physical activity, sleep, and dietary quality. Baseline cardiometabolic profiles averaged at normal values and there were no changes in glucose or insulin resistance; some blood pressure impact was observed. While strategies need to be developed to attract participants at higher cardiometabolic risk, this study demonstrates that partners of women within 5 years of a gestational diabetes diagnosis can be recruited and do achieve health behaviour change. TRIAL REGISTRATION: ClinicalTrials.gov: NCT02343354 (date of registration: January 22, 2015).

Development of the Lupus Interactive Navigator as an Empowering Web-Based eHealth Tool to Facilitate Lupus Management: Users Perspectives on Usability and Acceptability.

BACKGROUND: Systemic Lupus Erythematosus (SLE) is a serious, complex, and chronic illness. Similar to most other chronic illness states, there is great interest in helping persons with SLE engage in their disease management. OBJECTIVE: The objectives of this study were to (1) develop the Lupus Interactive Navigator (LIN), a web-based self-management program for persons with SLE, and (2) test the LIN for usability and acceptability. METHODS: The LIN development platform was based on the results of preliminary comprehensive needs assessments and adapted from the Oncology Interactive Navigator, a web-based tool developed for persons with cancer. Medical researchers, writers, designers, and programmers worked with clinical experts and persons with SLE to develop content for the LIN. Usability and acceptability of the LIN was tested on individuals with SLE meeting American College of Rheumatology criteria, who were recruited from five Canadian SLE clinics. Participants were provided with access to the LIN and were asked to use it over a two-week period. Following the testing period, participants were contacted for a 30-minute telephone interview to assess usability and acceptability. RESULTS: The content for the LIN was subdivided into six primary information topics with interview videos featuring rheumatologists, allied health professionals, and persons with SLE. Usability and acceptability of the LIN was tested on 43 females with SLE. Of these, 37 (86%) completed telephone interviews. The average age was 43.6 (SD 15.9) years and disease duration averaged 14.1 (SD 10.8) years. Median time spent on LIN was 16.3 (interquartile range [IQR]:13.7, 53.5) minutes and median number of sessions was 2 (IQR: 1, 3). Overall, Likert ratings (0=strongly disagree; 7=strongly agree) of website usability and content were very high, with 75% scoring >6 out of 7 on all items. All participants agreed that LIN was easy to use, would recommend it to others with SLE, and would refer to it for future questions about SLE. Very high ratings were also given to relevancy, credibility, and usefulness of the information provided. Overall, 73% of the participants rated all topics helpful to very helpful. Participants who reported more prior knowledge about SLE rated items regarding improvement in knowledge and helpfulness relatively lower than persons with less prior knowledge. Most participants commented that the LIN would be very useful to those newly diagnosed with SLE. Minor revisions were recommended. CONCLUSIONS: This study furthers the understanding of the needs in the SLE community and delivers a unique eHealth tool to promote self-management in persons with SLE. The LIN was found to be highly acceptable in content and usability. The information provided on LIN may be most helpful for individuals with less experience with the disease, such as those newly diagnosed, indicating the need to tailor the content for persons with more SLE experience.

Humor in systemic lupus erythematosus.

OBJECTIVE: Humor has neurophysiological effects influencing the release of cortisol, which may have a direct impact on the immune system. Laughter is associated with a decreased production of inflammatory cytokines both in the general population and in rheumatoid arthritis (RA). Our objective was to explore the effects of humor on serum cytokines [particularly interleukin-6 (IL-6)] and cortisol levels in systemic lupus erythematosus (SLE), after a standard intervention (120 min of visual comedy). MATERIAL AND METHODS: We enrolled 58 females with SLE from consecutive patients assessed in the Montreal General Hospital lupus clinic. The subjects who consented to participate were randomized in a 1:1 ratio to the intervention (watching 120 min of comedy) or control group (watching a 120 min documentary). Measurements of cytokine and serum cortisol levels as well as 24-h urine cortisol were taken before, during, and after the interventions. We compared serum cytokine levels and serum and 24-h urine cortisol levels in the humor and control groups and performed regression analyses of these outcomes, adjusting for demographics and the current use of prednisone. RESULTS: There were no significant differences between the control and humor groups in demographics or clinical variables. Baseline serum levels of IL-6, IL-10, tumor necrosis factor-alpha, and B-cell activating factor were also similar in both groups. There was no evidence of a humor effect in terms of decreasing cytokine levels, although there was some suggestion of lowered cortisol secretion in the humor group based the 24-h urinary cortisol levels in a subgroup. CONCLUSION: In contrast to what has been published for RA, we saw no clear effects of humor in altering cytokine levels in SLE, although interesting trends were seen for lower cortisol levels after humor intervention compared with the control group.

Fatigue in post-poliomyelitis syndrome: association with disease-related, behavioral, and psychosocial factors.

OBJECTIVE: To determine the biopsychosocial correlates of general, physical, and mental fatigue in patients with postpoliomyelitis syndrome (PPS) by assessing the additional contribution of potentially modifiable factors after accounting for important nonmodifiable disease-related factors. It was hypothesized that disease-related, behavioral, and psychosocial factors would contribute in different ways to general, physical, and mental fatigue in PPS and that a portion of fatigue would be determined by potentially modifiable factors. DESIGN: Cross-sectional study. SETTING: A tertiary university-affiliated hospital post-polio clinic. PATIENTS: Fifty-two ambulatory patients with PPS who were not severely depressed were included. ASSESSMENT OF RISK FACTORS: Potential correlates for fatigue included disease-related factors (acute polio weakness, time since acute polio, PPS duration, muscle strength, pain, forced vital capacity, maximum inspiratory pressure, maximum expiratory pressure, body mass index, disability, fibromyalgia), behavioral factors (physical activity, sleep quality), and psychosocial factors (depression, stress, self-efficacy). MAIN OUTCOME MEASUREMENTS: Fatigue was assessed with the Multidimensional Fatigue Inventory (MFI; assesses fatigue on 5 subscales) and the Fatigue Severity Scale (FSS). RESULTS: Multivariate models were computed for MFI General, Physical, and Mental Fatigue. Age-adjusted multivariate models with nonmodifiable factors included the following predictors of (1) MFI General Fatigue: maximum inspiratory pressure, fibromyalgia, muscle strength; (2) MFI Physical Fatigue: maximum expiratory pressure, muscle strength, age, time since acute polio; and (3) MFI Mental Fatigue: none. The following potentially modifiable predictors made an additional contribution to the models: (1) MFI General Fatigue: stress, depression; (2) MFI Physical Fatigue: physical activity, pain; and (3) MFI Mental Fatigue: stress. CONCLUSIONS: PPS fatigue is multidimensional. Different types of fatigue are determined by different variables. Potentially modifiable factors account for a portion of fatigue in PPS.

Dimensions of fatigue in systemic lupus erythematosus: relationship to disease status and behavioral and psychosocial factors.

OBJECTIVE: To characterize the experience of fatigue in patients with systemic lupus erythematosus (SLE) using a multidimensional assessment and to delineate contributors to physical and mental dimensions of fatigue. METHODS: Fatigue in 130 women with SLE was assessed using the Multidimensional Fatigue Inventory (MFI-20). Participants completed standardized questionnaires assessing sleep quality, depressed mood, social support, and leisure-time physical activity. A clinical examination determined disease activity, cumulative damage, and whether patients fulfilled American College of Rheumatology criteria for fibromyalgia (FM). A series of hierarchical multiple regressions were computed to identify contributors to physical and mental fatigue. RESULTS: Patients scored high on all 5 MFI-20 fatigue dimensions, with general fatigue and physical fatigue having the highest scores. A hierarchical multiple regression showed that greater disease damage and disease activity, the presence of FM, depressed mood, sleep disturbance, and less participation in leisure-time physical activity contributed to higher physical fatigue scores. The results of the second model found depressed mood to be the strongest determinant of mental fatigue. Disease-related variables were not associated with mental fatigue. CONCLUSION: Fatigue in SLE is multidimensional and multidetermined, with physical and mental aspects likely having different etiologies. A multidimensional assessment of fatigue in SLE is needed to tailor and optimize interventions aimed at alleviating fatigue.

Adherence during an individualized home based 12-week exercise program in women with fibromyalgia.

OBJECTIVE: Treatment recommendations for fibromyalgia (FM) include regular physical exercise. In this prospective study we examined predictors for adherence to stretching and aerobic exercises in women provided with an individualized home based program. METHODS: Thirty-nine women kept exercise diaries for 12 weeks. RESULTS: For both types of exercise, women who were less physically fit at baseline engaged in more exercise during the program. Yet for stretching, more lower body pain at baseline predicted engaging in less stretching exercise over time, whereas for aerobic exercise, more baseline upper body pain predicted more exercise over time. As time passed, participants with higher baseline physical fitness and/or older age were reducing their aerobic exercise practice at significantly faster rates, as were those women with higher baseline stress. CONCLUSION: Given that adequate levels of adherence were limited to about half of the participants for both types of exercise, steps to reduce barriers to exercise (e.g., stress) need to be taken when prescribing exercise in the treatment of FM.

Maintenance of exercise in women with fibromyalgia.

OBJECTIVE: To identify predictors of maintenance of exercise for women with fibromyalgia (FM). METHODS: Women with FM who had been randomized to the exercise arm of a clinical trial were studied prospectively during and 3 months following treatment. Subjects completed exercise logs weekly and returned the data via postal mail. Outcome variables were duration of aerobic and stretching exercises. Two separate multivariate models for longitudinal data were built with adjustment for in-treatment adherence and time. Pretreatment characteristics (self efficacy, pain, disability, stress, exercise barriers and benefits, and age) and changes during treatment (pain, disability, stress, and exercise barriers and benefits) were considered potential predictors of exercise maintenance. RESULTS: Stretching significantly decreased in the 3 months following treatment. High stress at baseline and increases in stress during treatment were associated with poor maintenance of stretching. Disability at baseline (measured with the Fibromyalgia Impact Questionnaire), an increase in barriers to exercise during treatment, and increases in upper-body pain during treatment were associated with worse maintenance of aerobic exercise in the 3 months following treatment. CONCLUSION: The maintenance of an exercise program in women with FM appears to be contingent on being able to deal with stress, pain, barriers to exercise, and disability.

Determinants of sleep quality in women with systemic lupus erythematosus.

OBJECTIVE: To characterize sleep complaints in women with systemic lupus erythematosus (SLE) and to identify correlates of sleep quality. METHODS: Sleep quality in 100 women with SLE was assessed using the Pittsburgh Sleep Quality Index (PSQI). Participants completed standardized questionnaires assessing depressed mood, leisure time physical activity, functional disability, and pain severity. A clinical examination determined disease activity, cumulative damage, and whether patients fulfilled the American College of Rheumatology criteria for fibromyalgia. A series of hierarchical multiple regressions were computed. RESULTS: The mean +/- SD global PSQI score was 6.98 +/- 4.03, with moderate to severe sleep impairment reported by 56% of the sample. The first model testing the importance of demographic factors was not statistically significant. In the disease-related model, the use of prednisone and functional disability both contributed to poor sleep quality (P < 0.001). The addition of level of exercise participation to the demographic set significantly added to the model (P = 0.001). Depression significantly added to the demographic set, explaining 29% of the variance (P < 0.0001). When these variables, along with disease related variables, were simultaneously regressed on the PSQI Global Score, only depressed mood appeared as a significant independent determinant of global sleep quality (P < 0.001). However, the point estimates for the Beta coefficients were consistent with effects for lack of exercise and prednisone use. CONCLUSION: A significant proportion of women with SLE suffer from poor sleep quality. The findings suggest that depressed mood, prednisone use, and lack of exercise contribute to decreased overall sleep quality.

Is there benefit in referring patients with fibromyalgia to a specialist clinic?

OBJECTIVE: To examine the benefit of specialist rheumatology consultation and followup for the first 238 patients referred to a tertiary care fibromyalgia (FM) clinic with emphasis on final diagnosis and outcome. METHODS: A retrospective chart review was performed for the first 238 patients attending a rheumatology subspecialty FM clinic. The main variables of interest were management received at the clinic, final diagnosis, and outcome. RESULTS: The final diagnosis was FM in 68%, and some other condition in the remaining 32%. Specialist contact was identified as useful in 73% of the total patient group, 96 with FM and 74 with non-FM. In the patients with FM who received followup in the clinic, outcome was judged favorable in 54%, whereas 46% showed no change or decline in health status. CONCLUSION: An important value of specialist rheumatology contact for patients with a symptom suggestive of diffuse musculoskeletal pain is to ensure that some other potentially treatable condition is not overlooked, rather than the provision of ongoing care for those with FM. Continued followup in a specialist clinic for patients with a primary diagnosis of FM is of questionable benefit.

A study of standard care in fibromyalgia syndrome: a favorable outcome.

OBJECTIVE: A longitudinal prospective study was undertaken to examine the outcome of fibromyalgia (FM) with standard medical care, as well as factors that might either predict or influence this outcome. METHODS: Eighty-two women with clinical FM were evaluated at baseline and 70 were followed for a mean of 40 months. Patients continued their usual management for FM as prescribed by their own physicians. The primary outcome variable was patient's overall status compared to baseline on a 7 point Likert scale (range 1 = much worse, 7 = much better). Secondary outcome measures included measurements for pain, fatigue, and patient and physician global assessment on a visual analog scale. Additional functional measures were the disease-specific Fibromyalgia Impact Questionnaire (FIQ), and the generic Health Assessment Questionnaire (HAQ). RESULTS: Of 70 (85%) patients who were followed up at 3 years, 33 (47%) reported overall moderate to marked improvement, and the remaining 53% reported either slight improvement, no change, or deterioration. The improved group (n = 33) compared to those that remained the same or worsened (n = 37) showed significant differences for change of score from baseline for tender point count, patient global assessment, sleep disturbance, fatigue, pain, FIQ and HAQ, and were younger, 46 versus 51 years. No other baseline demographic or disease variables discriminated between the 2 groups. The only baseline predictors for a favorable outcome were younger age and less sleep disturbance. CONCLUSION: The overall outcome in this group was favorable, with almost half the sample reporting clinically meaningful improvement in overall FM status. These findings are discussed in terms of their implications regarding current theory on the pathogenesis of FM.