Digital Health Utilization in Spinal Cord Injury: A Descriptive Study of a Population-Based Prospective Cohort.

OBJECTIVE: The objective of this study was to describe the use of digital health tools by people with spinal cord injury and associated factors. DESIGN: Cross-sectional data from the 2022 Swiss Spinal Cord Injury Cohort Study (SwiSCI) were analyzed. Descriptive statistics summarized data regarding sociodemographic characteristics, self-management, health, and digital health usage. Multiple logistic regression analysis examined the association of digital health use with reasons of use, concerns, confidence, sociodemographic characteristics, self-management, and comorbidities. RESULTS: Among 961 participants, 69% used digital health tools. Females were 1.79 times more likely to adopt them. People aged 60-70 had 3.84 times higher usage rates than 18-30 yrs old. Longer spinal cord injury duration increased usage by 0.98 times/year. Confidence using digital tools and positive health attitudes predicted usage. Comorbidities were positively correlated with usage. Concerns about digital health utilization had no significant impact. CONCLUSIONS: Our study provides one of the first comprehensive descriptions of digital health utilization in spinal cord injury. Its findings shed light on the intricate factors influencing digital health utilization, contribute to a deeper understanding of this patient population, and pave the way for more targeted and effective digital tools and strategies for their uptake.

Self-management of long-term conditions: a district nursing perspective of patient engagement.

The UK has a growing ageing population with increased prevalence of long-term conditions. It has the potential to overwhelm the country's healthcare system. The COVID-19 pandemic and its risk of transmission provided an opportunity for people with long-term conditions to focus on self-care and for district nurses to promote self-management. Self-management strategies, such as digital technology, motivational interviewing, social prescribing and shared decision-making can assist them in planning a whole-population approach towards managing physical and mental wellbeing. For this to become a reality, investment is needed to educate the patients, their carers, district nurses, multidisciplinary teams and to ensure the sustainability of self-care methods for future practice.

Public mobile chronic obstructive pulmonary disease applications for self-management: Patients and healthcare professionals' perspectives.

Poorly controlled chronic obstructive pulmonary disease (COPD) can negatively impact quality of life but mobile applications (apps) are popular digital tools that may mitigate these support needs. However, it is unclear if public mobile COPD apps are acceptable to healthcare professionals and patients, people living with COPD. Objectives: The primary objective is to determine people with COPD and healthcare professionals' perspectives on the appropriateness of public mobile COPD apps for supporting individuals' needs. The secondary objectives were to identify the ideal features and styles of mobile COPD apps for COPD self-management; and to identify the facilitators, barriers and needs for future COPD app research and development. Methods: Public mobile COPD apps were rated by questionnaires administered before and after focus group meetings. Ratings were reported as medians with interquartile ranges and median scores were categorized into three levels of appropriateness: 1-3 for inappropriate; 4-6 for uncertain; and 7-9 for appropriate. Results: A total of 6 people with COPD (mean age 68.2 ± 4.8years) and 22 healthcare professionals (mean age 45 ± 8.3years) completed this study. People with COPD identified one and healthcare professionals identified three public mobile COPD apps to be appropriate. They had different preferences for features and engagement styles but similar preferences for facilitators and barriers to use. Stakeholders mutually rated one public mobile COPD app as appropriate for self-management and emphasized the need for apps to be supplementary and customizable, rather than replacements for clinical management.

Self-management in young and middle-aged patients with hypertension: a systematic review and meta-synthesis of qualitative studies.

BACKGROUND: There has been a sharp increase in the prevalence of hypertension in young and middle-aged people at high risk of the disease. Despite the fact that good self-management can be effective in controlling blood pressure, patients do not perform well in this area, resulting in poor blood pressure control. It is therefore particularly important to gain a thorough understanding of patients' attitudes to self-management and the factors that influence them. The aim of this study was to synthesise the qualitative research on attitudes, motivations and challenges of self-management in young and middle-aged hypertensive patients, to analyse the synthesised results using the COM-B model and to propose appropriate improvement actions. METHODS: From the time of construction until May 2023, the system searched PubMed, Web of Science, ProQuest, Embase, MEDLINE, CINAHL, PsyCINFO and CNKI databases. The analyses were carried out using a thematic synthesis approach to summarise the key findings. The findings were then mapped and analysed using the COM-B model. RESULTS: A total of 11 studies were included, involving 250 patients between the ages of 18 and 64. Four themes with ten sub-themes were identified: Poor disease recognition (low disease perception, fuzzy disease knowledge); Barriers to doctor-patient interactions (short communication time, unmet knowledge needs, incomplete guidance for disease management); Living in a hostile environment (heavy workload, lack of companionship, ignorance of families); Expectations for a healthy body (responsibility of family roles, witness the cruelty of illness). Analysis of the composite results based on the COM-B model showed that low disease perceptions, barriers to doctor-patient interactions and life circumstances with enemies on all sides were the main challenges faced by young and middle-aged hypertensive patients, whereas the expectation of a healthy body was a motivation to promote self-management of blood pressure in patients. CONCLUSIONS: This study shows that family responsibilities are a particular motivator for self-management in young and middle-aged hypertensive patients. In response to the problems they face, we believe that meeting patients' knowledge needs, improving healthcare professionals' communication skills and valuing the role of community hospitals are effective ways to promote patient self-management. In the future, telemedicine, mobile healthcare and intelligent monitoring devices will provide a solution to reduce the burden on medical resources. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42018100810.

Study protocol for a randomized controlled trial of Adapt 2 Asthma (A2A), a culturally relevant coping skills and asthma management intervention for Latinx Families.

BACKGROUND: Latinx children in the United States experience disparities in asthma control and asthma-related functional outcomes compared to non-Latinx White children, including more school absences, emergency department visits, and hospitalizations for asthma. Stress appears to play a role in asthma control, but interventions designed to address the role of stress in asthma control for Latinx children are limited. METHOD: The current randomized controlled trial tests the effects of Adapt 2 Asthma (A2A), a family-based coping skills and asthma management intervention tailored to the stressors, strengths, and cultural beliefs of Latinx families, compared to an asthma self-management control arm (the Asthma Plan for Kids; APK). Latinx families of children ages 8 to 14 years old with asthma (target N = 280) are identified and enrolled from primary care clinics and randomly assigned to either A2A or APK. The intervention is delivered by lay health workers trained and receiving ongoing consultation from the study team. The primary outcome is child- and parent-reported asthma control, while secondary outcomes are child's quality of life, lung function, school absences, and emergency department visits, and child and parent coping and family asthma management behaviors. Participants will be assessed at baseline, post-intervention, and at 6- and 12-month follow-up timepoints. DISCUSSION: This study has the potential to provide new evidence regarding the effects of culturally relevant coping and asthma management intervention strategies for Latinx children with asthma. TRIAL REGISTRATION: Clinicaltrials.gov NCT05118282 . Registered on 11 November 2021.

Effects of self-management interventions based on the COM-B model on peri-implant condition in older adults with periodontitis: a randomized controlled trial.

OBJECTIVES: This study evaluated the impact of self-management interventions based on the COM-B model on peri-implant conditions in older adults with periodontitis. MATERIALS AND METHODS: The patients were randomly divided into two groups: Group 1 (control group) received only an oral health education (OHE) pamphlet. Group 2 (test group) performed a self-management intervention based on the COM-B model. Each patient was examined for the most inflammatory implant. The measurement parameters included self-efficacy, self-management ability, and clinical indicators such as probing depth (PD), bleeding on probing (BOP), modified gingival index (mGI), modified plaque index (mPI), and peri-implant mucositis severity score (PMSS). The data was collected at baseline, 4, 8, and 12 weeks. RESULTS: 42 patients underwent testing for 3 months. After 12 weeks, the improvement of self-efficacy, self-management ability, and the reduction of BOP, mPI, and PMSS in the test group was significantly higher than in the control group. CONCLUSION: The study suggests that self-management interventions based on the COM-B model can enhance the self-management ability of older adults with periodontitis and reduce peri-implant inflammation. This method is more effective than distributing OHE pamphlets. TRIAL REGISTRATION: The randomized controlled clinical trial was registered on Chinese Clinical Trial Registry (No. ChiCTR2400082660, Date: 03/04/2024).

Evaluating a digital tool for supporting people affected by breast cancer: a prospective randomized controlled trial-the ADAPT study.

PURPOSE: This study reports the findings from the ADAPT randomized controlled trial (RCT), concerning the impact of a digital tool for supported self-management in people affected by breast cancer on patient activation as the primary outcome, with health-related quality of life (HRQoL), and health status as secondary outcomes. METHODS: Women with early-stage breast cancer were randomly assigned to standard care (control) or standard care in addition to the breast cancer digital tool (intervention). Data were collected using a demographic questionnaire, the Patient Activation Measure (PAM-13), the European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire (EORTC QLQ-C30), and the EuroQol 5-Dimension 5-Level questionnaire (EQ-5D-5L) at baseline, 6 weeks, 3 months, 6 months, and 1 year from diagnosis. Linear mixed effect model regression was used to assess the effect of the digital tool over the first year from diagnosis while correcting for intra-participant correlation. RESULTS: A total of 166 participants were included, with 85 being randomized into the intervention. No significant differences (p > 0.05) in the PAM-13 scores, EORTC QLQ-C30 scales (global QoL, physical functioning, emotional functioning, pain, fatigue), and EQ-5D-5L Index between the control and intervention groups were observed. It is important to note that there was significant non-adherence within the intervention group. CONCLUSION: The breast cancer digital tool had no statistically significant impact on patient activation, HRQoL, and health status over time compared to standard care alone in women with early-stage breast cancer. Future research should focus on identifying and addressing barriers to digital tool engagement to improve efficacy. Clinical trial information The study was registered at https://clinicaltrials.gov (NCT03866655) on 7 March 2019 ( https://clinicaltrials.gov/study/NCT03866655 ).

Epidemiological investigation support application and user evaluation based on infectious disease self-management model in the endemic era.

Objectives: Rapid epidemiological investigations are fundamental to prevent the spread of infectious diseases such as coronavirus disease 2019. An epidemiological investigation presents significant challenges for both epidemiologists and infected individuals. It requires creating an environment that enables people to independently manage infectious diseases and voluntarily participate in epidemiological investigations. Methods: We developed the KODARI application, an epidemiological investigation support system that users can voluntarily use. We developed the questionnaires based on literature reviews. We evaluated the application through an online survey from December 2 to 14, 2022. Results: The application automatically or manually collect epidemiological investigation information. The application improved data accuracy through accurate information collection. It voluntarily can transmit self-management information to epidemiologist terminals or users in real time. We collected 248 users from an online survey. Most users had high ratings and willingness to use. They have willingness to manage infectious patients was substantial. The application was evaluated as helpful for epidemiological investigations and could shorten the time required for epidemiological investigations by more than 30 min. Conclusion: The application proposes a model based on people's voluntary participation. We demonstrated that the application could enhance epidemiological investigations and diminish the duration of existing epidemiological investigation processes.

Effectiveness of a peer-to-peer, self-management intervention for young people with depression and anxiety in Denmark: an observational study and a propensity score-matched comparison.

Objective: This study investigated the effectiveness of a 7-weeks peer-to-peer program for young people aged 15 to 25 years with depression or anxiety symptoms in Denmark. Methods: A total of 483 participants (72% women) participated in the program and the evaluation. The participants completed questionnaires at baseline, postintervention, and at 5-month follow-up to assess changes in depression symptoms (using Beck's Depression Inventory-II), anxiety symptoms (using Spielbergers State-Trait Anxiety Inventory for Adults) and self-efficacy in controlling or managing the illness (using the personal control subscale from the Illness Perception Questionnaire-Revised). Analyses were done using repeated measures mixed linear regression models. Moreover, a register-based matched comparison group was derived as a comparison to assess changes in being in education and employment at 8-month follow-up. Results: Within the intervention group, both depression and anxiety scores declined across the 5-month follow-up compared to baseline (b = -9.6, 95% CI: -11.2, -8.1 for depression symptoms). The self-efficacy score increased from baseline to post-intervention (b = 1.4, 95% CI: 1.0, 1.8) and this level was maintained at follow-up. More than half of the participants were in education at baseline while 24% received social transfer payments. Compared with matched comparison group, a lower proportion of the intervention group remaining in education (71% vs. 80%). Among participants who were employed at baseline, a higher proportion of the intervention group were enrolled in education (27% vs. 19%) and were unemployed (14% vs. 4%) compared to the matched comparison group. Conclusion: This study supports the effectiveness of a peer-to-peer intervention for depression and anxiety symptoms, and self-efficacy in symptom control. However, mixed effects on education and employment were observed, indicating a negative impact on education among those initially enrolled and a higher proportion of employed participants starting education.

The Complexity of Health Self-Management Behavior. Beliefs and Attitudes of Individuals Living With Spinal Cord Injury in Switzerland.

OBJECTIVE: Within the objective of defining targets for interventions to support self-management behaviors among people living with spinal cord injury, this study aims to describe self-management attitudes and beliefs in community-dwelling people living with spinal cord injury in Switzerland and to identify their correlates in terms of personal characteristics and outcomes, such as secondary health conditions and quality of life. DESIGN: This is a cross-sectional, observational study using data from the third community survey of the Swiss Spinal Cord Injury Cohort Study. RESULTS: Out of 1158 individuals, the data revealed high endorsement in areas of prevention importance, perceived knowledge, adherence to recommendations, and proactive problem-solving. Personal and lesion characteristics were significantly associated with differing self-management beliefs and attitudes. Overall, a more positive and proactive stance toward self-management correlated with enhanced outcomes. However, readiness to renounce activities to adhere to self-management recommendations was associated with lower quality of life. CONCLUSIONS: The findings confirm the complex nature of self-management among individuals with spinal cord injury, advocating for a tailored, person-centered approach in designing interventions. Highlighting a potential trade-off between strict self-management adherence and quality of life outcomes posits an avenue for balanced, individualized self-management strategies to ameliorate health outcomes and life quality for individuals with spinal cord injury.

Short-term effects on physical activity level with web-based self-management support in people with COPD: a randomised controlled trial.

We aimed to evaluate short-term effects of a web-based self-management support on objectively measured physical activity (PA) compared to usual care in people with chronic obstructive pulmonary disease (COPD). We conducted a pragmatic randomised controlled trial including people with stable COPD within primary healthcare. Participants were randomised to intervention group, IG (access to the COPD Web, an interactive website to support self-management with focus on PA), or to control group, CG (usual care). Primary outcome at 3 months was change in accelerometry-measured daily steps analysed with ANCOVA, and secondary outcomes were self-reported PA, disease-related symptoms, and quality of life. Missing data in intention-to-treat (ITT) analyses were multiply imputed. One hundred and forty-six participants (n = 73/group), mean (SD) age 69.5 (6.7) years, FEV1pred 60.7 (19.1)% were included. The ITT analysis showed no significant difference in steps between the groups: 1295 steps (95% CI: [-365, 2955], p = 0.12), while the complete case analysis (n = 98) revealed a significant difference of 1492 steps (95% CI: [374, 2609], p = 0.01) in favour of IG. A significant increase in self-reported PA was seen in IG in both the ITT and complete case analysis. In summary, access to the COPD Web was insufficient to increase short-term PA level compared to usual care. However, among participants with complete step data, a clinically relevant effect on daily steps exceeding the minimal important difference was observed, partly explained by higher baseline PA than among dropouts. This indicates that access to the COPD Web may increase PA levels for some people with COPD.

Healthy Eating and Active Lifestyles for Diabetes (HEAL-D) Online: a mixed methods evaluation exploring the feasibility of implementing a virtual culturally tailored diabetes self-management programme for African and Caribbean communities.

OBJECTIVES: To assess the feasibility and acceptability of delivering Healthy Eating and Active Lifestyles for Diabetes (HEAL-D) Online. INTERVENTION: HEAL-D Online-a 7-week culturally tailored type 2 diabetes educational programme delivered using online platform. SETTING: Programme delivered by a London NHS trust, with patients referred from primary care healthcare professionals via a central booking system. PARTICIPANTS: 53 HEAL-D service users completed a postcourse questionnaire, and 14 service users and 7 service delivery staff participated in interviews. DESIGN: Mixed methods service evaluation. PRIMARY AND SECONDARY OUTCOMES: Service user engagement, acceptability and perceived patient benefit assessed using service activity data. Feasibility and acceptability of HEAL-D Online, using semi-structured interviews to explore the views and experiences of service users and service delivery staff. RESULTS: Service activity data showed that initial uptake of HEAL-D Online was good (62% attendance) with a high adherence to the programme (77% completion). A high fidelity (94%) was observed, and qualitative findings showed that staff and service users were satisfied with all aspects of course delivery. Both service activity and qualitative data indicated that attendees felt more confident in controlling their diet and managing their diabetes post-HEAL-D Online. CONCLUSION: This evaluation demonstrates the feasibility of delivering HEAL-D using an online platform, with its ability to achieve similar goals compared with its face-to-face counterpart. Challenges were identified around the identification, recruitment and referral of eligible patients into the programme, which need to be addressed for successful implementation on a wider scale.

Personalised Health Behaviour Support Programme in Adults With Post-COVID Syndrome: A Randomised, Controlled Pilot Feasibility Trial.

BACKGROUND: We investigated whether a novel 8-week personalised health behaviour support programme, focusing on the stability of symptoms and strategies to improve activities of daily living, was feasible and acceptable in adults with post-COVID syndrome. METHODS: In this randomised, controlled, pilot feasibility trial, 32 adults with post-COVID syndrome (continued symptoms for ≥ 12 weeks) were randomised 1:1 to receive personalised health behaviour support (self-reported physical activity and symptom diaries, plus seven one-to-one remotely delivered personalised self-management support sessions), once weekly for 8-weeks, or usual care (referral to online 'your COVID-19 recovery' programme). The primary outcome was the feasibility of recruiting and randomising adults with post-COVID syndrome. The secondary outcomes were to assess the acceptability and safety of the intervention and various outcome measures. RESULTS: Of the 48 adults who expressed interest in the study, 32 (67%) were eligible and completed the baseline assessment. All 32 adults were willing to be randomised to either the personalised health behaviour support programme (n = 17) or usual care (n = 15) and 27 (age: 45 ± 12 years) adults completed follow-up at 9 weeks. The intervention was deemed feasible, with high adherence (92% and 94% completion rates for the physical activity and symptom diaries, respectively) and excellent acceptability rates (94% 'liked the intervention a lot'). The intervention was deemed safe, with no symptom exacerbations reported. CONCLUSION: An 8-week personalised health behaviour support programme was feasible for adults with post-COVID syndrome, with good adherence and acceptability rates. Early pilot data from this small sample also suggests meaningful improvements in physical activity, fatigue and respiratory symptoms. PATIENT OR PUBLIC CONTRIBUTION: People living with post-COVID syndrome were involved from the outset with the study design, review of study documentation and interpretation of the data following completion. Furthermore, several participants have supported the local dissemination of findings following the completion of the study.

Technology-Based Interventions to Promote Diabetes Self-Management Behaviors for Persons Newly Diagnosed with Type 2 Diabetes: A Scoping Review.

PURPOSE OF REVIEW: Type 2 diabetes (T2D) management is complex and requires daily personal involvement and self-management skills to maintain optimal glycemic levels and improve health outcomes. Engagement in self-management behaviors in the early years of diagnosis can be challenging due to prevailing psychosocial factors present during this critical transition period, coupled with a lack of information, support, and skills. Technology-based diabetes self-management interventions can improve access to needed education and support, and their effectiveness in the general T2D population is well documented. This scoping review synthesized evidence on the use of technology for promoting diabetes self-management behaviors and related outcomes among individuals newly diagnosed with T2D (within the first 12 months since diagnosis). RECENT FINDINGS: Twenty-five studies were included. Technology-based diabetes self-management interventions tailored to those newly diagnosed with T2D have grown exponentially in the past five years. Existing evidence, though limited, showed that technologies such as websites, mobile apps, and continuous glucose monitoring combined with other communication features, can facilitate patient education, patient-provider communication, and health data monitoring. However, these technologies less commonly involved social support functions. These technologies have the potential to improve diabetes knowledge and positively impact clinical, behavioral, and psychological outcomes. However, small sample sizes, use of non-experimental designs, and the absence of formative research and theoretical foundations limit the strength of existing studies. Technology-based self-management interventions for those newly diagnosed with T2D show promise in improving T2D-related outcomes. Future studies should include larger sample sizes, adopt rigorous study designs, and integrate formative work to enhance relevance, adoption, and impact.

The critical elements of digital health in diabetes and cardiometabolic care.

Digital innovations provide novel opportunities to individualize a person's care to best match their lifestyle needs and circumstances and to support them as they live their daily lives with diabetes. These innovations also serve to provide actionable data and insights for the care team giving them a "Webb telescope-like" view into their individual self-management journey, allowing them to see what cannot be seen during infrequent and limited office visits, thereby facilitating collaboration and communication to optimize the care plan on a timely basis. Technology advances are enabling diabetes care to transition from episodic, synchronous, primarily in-person care to include synchronous virtual care options and to continuous, on-demand, data-informed, asynchronous digital care better matching the demands of living with a relentless 24/7 chronic condition. In this paper we will discuss the critical elements and considerations in designing and implementing successful diabetes digital health tools in clinical practice.

Knowledge, attitudes, and practices among patients with diabetes mellitus and hyperuricemia toward disease self-management.

Background: This study aimed to assess the knowledge, attitudes and practices (KAP) among patients with diabetes mellitus and hyperuricemia toward disease self-management. Methods: This web-based cross-sectional study was conducted between June 2023 and January 2024 at Heilongjiang Provincial Hospital. A self-designed questionnaire was developed to collect demographic information of patients with diabetes mellitus and hyperuricemia, and assess their knowledge, attitudes and practices toward disease self-management. Results: A total of 482 participants were enrolled in this study, among them, 364 (75.52%) were male, 235 (48.76%) were aged between 40 and 59 years, 226 (46.89%) had a body mass index (BMI) ranging from 24 to 28 kg/m2, 337 (69.92%) had received a diagnosis of diabetes for a duration of 2 years or more, while 245 (50.83%) had been diagnosed with hyperuricemia for a similar duration. Their median (range) knowledge, attitude and practice scores were 10.00 (9.00, 11.00) (possible range: 0-12), 38.00 (36.00, 40.00) (possible range: 9-45), and 30.00 (26.00, 34.75) (possible range: 10-50), respectively. The path analysis demonstrated that knowledge had direct effects on attitude (ß = 0.508, p < 0.001), and attitude had direct effects on practice (ß = 0.448, p < 0.001). Additionally, there was an indirect effect of knowledge on practice mediated through attitude, with a path coefficient of 0.228 (p < 0.001). Conclusion: This study demonstrates that patients with diabetes mellitus and hyperuricemia exhibit relatively proficient responses to certain items within the KAP dimensions. However, it also exposes a certain degree of inadequacy in the KAP level toward disease management. Interventions should focus on improving patients' understanding of their conditions while fostering positive attitudes, ultimately translating into better self-management practices.

A Self-led Self-management Intervention Supporting Teens with IBD (ASSIST-IBD): protocol for a feasibility study of a novel digital treatment adherence intervention.

INTRODUCTION: Treatment non-adherence is common in young people with inflammatory bowel disease (IBD), yet support is lacking. A self-led self-management intervention supporting teens with IBD (ASSIST-IBD) is a new theory-based digital treatment adherence intervention, co-developed by young people living with IBD. ASSIST-IBD includes 10 short modules supporting adolescents to feel confident to follow their treatment plan, develop skills to overcome adherence obstacles, feel confident when talking to others about IBD and feel positive about the future. This research aims to determine the feasibility of implementing and measuring the effectiveness of ASSIST-IBD, using a single-arm mixed-methods feasibility trial. METHODS AND ANALYSIS: 24 young people (aged 13-17) with IBD identified as being ≤80% adherent, and their parents, will use ASSIST-IBD for 6-12 weeks. For the primary endpoint of progression to randomised controlled trial, qualitative and quantitative data will be collected on; number of eligible members of the target population; number of recruited participants; reasons for non-participation and ineligibility; retention and follow-up rates; reasons for early withdrawal; completeness and utility of outcome measures; as well as further data on intervention acceptability, user experiences and user engagement. Secondary outcomes of preliminary effectiveness will include pre-intervention and post-intervention measures of treatment adherence (MARS-5), quality-of-life (IMPACT-III) and well-being (WEMWBS), and self-reported behaviour change success. Quantitative data will be analysed using descriptive statistics; qualitative data will be analysed thematically. An active patient and public involvement and engagement group will advise on the research throughout, including the development of the protocol. ETHICS AND DISSEMINATION: The study has been granted ethical approval by Aston University's Health and Life Sciences Research Ethics Committee (ref:#HLS2112) and NHS Research Ethics Committee, Nottingham 1 Board (IRAS:#344918). Findings will be disseminated via peer-reviewed publications and lay summaries. REGISTRATION DETAILS: This protocol is registered on the Open Science Framework (https://doi.org/10.17605/OSF.IO/KC649).

Self-Management Systems for Patients and Clinicians in Parkinson's Disease Care: A Scoping Review.

Background: Digital self-management tools including mobile apps and wearables can enhance personalized care in Parkinson's disease, and incorporating patient and clinician feedback into their evaluation can empower users and nurture patient-clinician relationships, necessitating a review to assess the state of the art and refine their use. Objective: This review aimed to summarize the state of the art of self-management systems used in Parkinson's disease management, detailing the application of self-management techniques and the integration of clinicians. It also aimed to provide a concise synthesis on the acceptance and usability of these systems from the clinicians' standpoint, reflecting both patient engagement and clinician experience. Methods: The review was organized following the PRISMA extension for Scoping Reviews and PICOS frameworks. Studies were retrieved from PubMed, CINAHL, Scopus, ACM Digital Library, and IEEE Xplore. Data was collected using a predefined form and then analyzed descriptively. Results: Of the 15,231 studies retrieved, 33 were included. Five technology types were identified, with systems combining technologies being the most evaluated. Common self-management strategies included educational material and symptom journals. Only 11 studies gathered data from clinicians or reported evidence of clinician integration; out of those, six studies point out the importance of raw data availability, data visualization, and integrated data summaries. Conclusions: While self-management systems for Parkinson's disease are well-received by patients, the studies underscore the urgency for more research into their usability for clinicians and integration into daily medical workflows to enhance overall care quality.

Digital tools, such as smartphone applications and wearable devices, could help people with Parkinson's disease manage their symptoms by using data and technology to provide support that is personalized to them and by supporting communication between patients and healthcare providers. This review studies current literature on these digital self-management systems for people with Parkinson's disease. Of the 33 studies included in our review, we found that many of these systems combine different types of digital technologies (for example, a mobile app and a wearable sensor). The most common strategies to help support patients with self-management included in these digital tools were providing educational health content and symptom diaries. Only a few studies have considered healthcare providers' perspectives on these systems. Those that did highlighted a need for better access to patient data, improved data presentation, and summaries of key health insights. While patients find digital self-management tools favorable, further research is needed to ensure they meet healthcare providers' professional needs and can fit easily into daily clinical routines, ultimately improving care for individuals with Parkinson's disease.

Family Self-management Program for Hypertension Management and Sodium Consumption Adherence: A Parallel Randomized Control Trial Among Family Caregivers and People With Hypertension.

BACKGROUND: Hypertension (HTN) has become a serious health problem in developing countries. The family has an important role in maintaining blood pressure (BP) at home, and sodium diet compliance in people with HTN needs to be developed. Therefore, this research aimed to evaluate the effectiveness of a family self-management program (FSMP) in HTN management and compliance with sodium consumption in rural areas of Indonesia. Study Design: A parallel-group, single-blind randomized controlled trial. METHODS: One hundred twenty-six eligible participants were randomly allocated to an intervention (n=63) and a control group (n=63). Participants in the intervention group received a 24-week (6-month) FSMP intervention. The primary outcome measures included the systolic and diastolic BP, the Score Sodium Questionnaire (SSQ), and the Morisky Medication Adherence Scale 8 (MMAS-8). The Knowledge of Health Care for HTN questionnaire and the Efficacy and Behavior Toward Health Care for Patients with HTN questionnaire were used to assess the secondary outcome. RESULTS: The final results were analyzed from 121 participants (n=61 intervention and n=60 control group). The repeated analysis of variance (ANOVA) test results demonstrated significant effects on the management of HTN and adherence to sodium consumption as indicated by systolic (P=0.004) and diastolic BP (P=0.006), SSQ (P<0.001), MMAS 8 (P<0.001), caregivers' knowledge (P<0.001), caregivers' self-efficacy (P<0.001), and caregivers' behaviors (P=0.005). CONCLUSION: The FMSP emerges as a promising strategy for managing BP and adherence to sodium consumption in people with HTN through the support of family caregivers and selfmanagement activities.

Adapting a Telehealth Physical Activity and Diet Intervention to a Co-Designed Website for Self-Management After Stroke: Tutorial.

People who experience a stroke are at a higher risk of recurrent stroke when compared with people who have not had a stroke. Addressing modifiable risk factors like physical inactivity and poor diet has been shown to improve blood pressure, a leading contributor to stroke. However, survivors of stroke often experience challenges with accessing risk reduction services including long wait lists, difficulty with transportation, fatigue, impaired function, and diminished exercise capacity. Providing health interventions via a website can extend the reach when compared with programs that are only offered face to face or via real-time telehealth. Given global challenges of accessing secondary prevention programs, it is important to consider alternative ways that this information can be made available to survivors of stroke worldwide. Using the "design thinking" framework and drawing on principles of the integrated knowledge translation approach, we adapted 2 co-designed telehealth programs called i-REBOUND - Let's get moving (physical activity intervention) and i-REBOUND - Eat for health (diet Intervention) to create the i-REBOUND after stroke website. The aim of this paper is to describe the systematic process undertaken to adapt resources from the telehealth delivered i-REBOUND - Let's get moving and i-REBOUND - Eat for health programs to a website prototype with a focus on navigation requirements and accessibility for survivors of stroke. We engaged a variety of key stakeholders with diverse skills and expertise in areas of stroke recovery, research, and digital health. We established a governance structure, formed a consumer advisory group, appointed a diverse project team, and agreed on scope of the project. Our process of adaptation had the following 3 phases: (1) understand, (2) explore, (3) materialize. Our approach considered the survivor of stroke at the center of all decisions, which helped establish guiding principles related to our prototype design. Careful and iterative engagement with survivors of stroke together with the application of design thinking principles allowed us to establish the functional requirements for our website prototype. Through user testing, we were able to confirm the technical requirements needed to build an accessible and easy-to-navigate website catering to the unique needs of survivors of stroke. We describe the process of adapting existing content and co-creating new digital content in partnership with, and featuring, people who have lived experience of stroke. In this paper, we provide a road map for the steps taken to adapt resources from 2 telehealth-delivered programs to a website format that meets specific navigation and accessibility needs of survivors of stroke.