Confidence In Self-management Research Articles

EVALUATING IMPACT OF GETUBETTER, A DIGITAL SELF-MANAGEMENT SUPPORT TOOL, DEPLOYED TO 14,500 PATIENTS ON A COMMUNITY MSK PHYSIOTHERAPY WAITING LIST

Purpose/BackgroundMore than 20 million UK citizens have MSK conditions, and post-pandemic the backlog awaiting access to MSK services has increased. The most prevalent MSK condition is low back pain (LBP), and getUBetter has been recommended by NICE as one of five digital health technologies for helping manage LBP. Purpose: Evaluate impact of getUBetter on a community MSK waiting list.Methods/ResultsMixed methods approach used. All patients on community MSK waiting list sent a postal invite for getUBetter. Number of downloads and frequency of use recorded, and users emailed questionnaire exploring outcomes and satisfaction. Rate users removed themselves from the waiting list compared with non-users. Of 14,500 invitations, 657(4.5%) patients downloaded getUBetter, 395(60.1%) used it once and 138(21%) ≥3 times. Seventeen (7%) of 239 patients canvassed responded to questionnaire, 17% reported improved pain, 21% reported improved confidence and had been helped back to work. Twenty-five percent better understood their condition and 43% needed no other treatment. Seventy-five percent were critical of limited content, with chronic osteoarthritis mentioned. 69.6% of users removed themselves from the waiting list. This was 29.6% above the rate for non-users.ConclusionSending postal invites for getUBetter to a MSK waiting list yielded limited uptake. However, despite some criticisms, patients using it reported improved pain, early return to usual activities, and improved confidence in self-management. Some patients recovered without the need for additional support and getUBetter shows some potential for reducing a MSK waiting list. Clearly further work is required to explore methods to increase patient uptake and maximise impact.Conflicts of interestNoneSources of fundingNone

Interprofessional follow-up for people at risk of type 2 diabetes in primary healthcare – a randomized controlled trial with embedded qualitative interviews

Objective To examine the effects of an empowerment-based interprofessional lifestyle intervention program among people at risk of type 2 diabetes on knowledge, skills, and confidence in self-management, health, psychological well-being, and lifestyle characteristics, and to explore the participants’ perceptions of participating in the intervention. Design and methods In line with the Medical Research Council complex interventions research methods framework, we conducted a randomized controlled trial with embedded qualitative interviews in primary healthcare clinics in Norway between 2019–2021. Of the patients at risk (The Finnish Diabetes Risk Score Calculator (FINDRISC) ≥15 or Body Mass Index (BMI) ≥30) 142 accepted the invitation, and 14 participants from the intervention group participated in individual interviews after the 12-month follow-up. Our primary outcome was the Patient Activation Measure (PAM-13). Secondary outcomes were EQ-5D-5L, EQ-VAS, WHO-Overall health, WHO-Overall QOL, weight, height, waist circumference, and regularity of physical activity. We used thematic analysis to analyse the qualitative data. Results There was no clinically relevant differences of neither the primary nor the secondary endpoints between intervention and control group. As to the qualitative data, we identified two distinct features: ‘Meaningful perspectives on lifestyle changes’ and ‘Lifestyle change is not a linear process due to challenges faced along the way’ putting ownership of their choices in life into picture. Conclusion The negative results of the RCT stand in contrast to the findings given by the participants voices, perceiving the intervention as a key eye opener placing their health challenges in perspective. How to interpret these seemingly conflicting findings of participants being seen, heard, and understood, helping them to take more conscious ownership of their choices in life, and at the same time demonstrating no improvements in symptoms or measures, is a dilemma that needs further exploration. We should be careful to implement interventions that do not demonstrate any effects on the quantitative outcomes.

Development and Evaluation of a Reliable Medication Management Self-Assessment Checklist.

An ability to effectively self-manage medications is the result of several factors influencing a person's decision to take medications. The need for new approaches to medication self-management are evident in the persistent trends of ineffective medication use and unfortunate consequences, referred to as drug-related morbidity and mortality. Fortunately, pioneering initiatives have emerged to reshape our approach for developing a rational organizational paradigm so that patients can confidently self-manage medications. Favorable outcomes of studies pertaining to the delivery of comprehensive medication therapy management services within the practice of pharmaceutical care prompts the question, 'Can patients and family members apply a consistent and systematic 4-step pharmacotherapy assessment process to better organize their decision-making and confidence in medication self-management?' To answer this question an Effective Medication Self-Management Toolkit based on this 4-step process, and a Medication Management Self-efficacy Checklist, were developed and evaluated for feasibility, acceptability, and internal consistency reliability. The first evaluation established the preliminary acceptability and feasibility of the toolkit using a convenience sample of 39 residents of independent living facilities in focus group sessions. All participants indicated they perceive that the 4-step process can help individuals successfully self-manage medications. At the conclusion of the focus group sessions, all 39 participants completed the 7-item post-session checklist. This paper presents the second evaluation to establish the internal consistency reliability of the toolkit's Medication Management Self-efficacy Checklist using Cronbach's alpha. There was good internal consistency of the self-efficacy checklist with a Cronbach's alpha value of 0.82. This investigation of a novel approach for applying the 4-step pharmacotherapy assessment process by patients suggests that the medication self-efficacy checklist provides a reliable and useful measure of a patient's confidence in self-managing medications.

A crisis planning and monitoring intervention to reduce compulsory hospital readmissions (FINCH study): protocol for a randomised controlled feasibility study

BackgroundRates of compulsory (also known as involuntary) detention under mental health legislation have been rising over several decades in countries including England. Avoiding such detentions should be a high priority given their potentially traumatic nature and departure from usual ethical principles of consent and collaboration. Those who have been detained previously are at high risk of being detained again, and thus a priority group for preventive interventions. In a very sparse literature, interventions based on crisis planning emerge as having more supporting evidence than other approaches to preventing compulsory detention.MethodWe have adapted and manualised an intervention previously trialled in Zürich Switzerland, aimed at reducing future compulsory detentions among people being discharged following a psychiatric admission that has included a period of compulsory detention. A co-production group including people with relevant lived and clinical experience has co-designed the adaptations to the intervention, drawing on evidence on crisis planning and self-management and on qualitative interviews with service users and clinicians. We will conduct a randomised controlled feasibility trial of the intervention, randomising 80 participants to either the intervention in addition to usual care, or usual care only. Feasibility and acceptability of the intervention and trial procedures will be assessed through process evaluation (including rates of randomisation, recruitment, and retention) and qualitative interviews. We will also assess and report on planned trial outcomes. The planned primary outcome for a full trial is repeat compulsory detention within one year of randomisation, and secondary outcomes include compulsory detention within 2 years, and symptoms, service satisfaction, self-rated recovery, self-management confidence, and service engagement. A health economic evaluation is also included.DiscussionThis feasibility study, and any subsequent full trial, will add to a currently limited literature on interventions to prevent involuntary detention, a goal valued highly by service users, carers, clinicians, and policymakers. There are significant potential impediments to recruiting and retaining this group, whose experiences of mental health care have often been negative and traumatising, and who are at high risk of disengagement.Trial registrationISRCTN, ISRCTN11627644. Registered 25th May 2022, https://www.isrctn.com/ISRCTN11627644.

Implications of Patient-Reported Outcome Measures among patients with recently diagnosed type 2 diabetes

BackgroundFor the past two decades, the assessment of the quality of diabetes care has mostly relied on clinical quality indicators. These have not included Patient-Reported Outcome Measures (PROMs) which provide information on outcomes deemed valuable by patients. We aimed to examine the potential utility of PROMs in type 2 diabetes care and to study the association of PROMs with patients' characteristics and clinical quality indicators.MethodsA cross-sectional survey of recently (≤ 4 years) diagnosed patients with type 2 diabetes (n = 392) in the setting of a large health plan. PROMs were based on two well-validated questionnaires, the Problem Areas in Diabetes (PAID) one-page questionnaire that measures diabetes-related distress, and the ten item PROMIS-10 global health questionnaire that measures general health. Additional items were added following a previous qualitative study among Israeli patients with diabetes. The survey was carried out using phone interviews, and data collected were linked to the electronic medical records. Multivariable regression models were used to assess the associations of socio-demographic variables and clinical quality indicators with the PROMs.ResultsAbout a fifth of participants (22%) had high diabetes-related distress (PAID score ≥ 40), a third reported that they did not feel confident in self-management of diabetes and about a third reported having sexual dysfunction. Women, younger patients, and those with a low education level (≤ 12 years) reported worse general health, were more likely to experience high diabetes-related distress, and to have low confidence in diabetes self-management. Interestingly, performance of all seven diabetes quality indicators was associated with worse general health and high diabetes-related distress. Of note, levels of glycated hemoglobin, LDL-cholesterol, or blood pressure were not associated with PROMs.ConclusionsPROMs provide important information on patient self-reported health status and are likely to reflect aspects of the quality of care that are not otherwise available to clinicians. Thus, the use of PROMs has the potential to expand the evaluation of diabetes care and promote patient-centered care. We recommend that policy-makers in the Ministry of Health and health maintenance organizations implement PROMs for assessing and improving the care for patients with type 2 diabetes.

FACTORS ASSOCIATED WITH OLDER ADULTS’ READINESS FOR DISCHARGE FROM POST ACUTE CARE TO HOME

Abstract Following acute hospitalization, older adults are often transferred to post-acute care (PAC) for rehabilitation and nursing care. Most PAC admissions are comprised of adults with multimorbidity (>2 chronic diseases). After PAC discharge many patients are rehospitalized within 30 days. The goal of this study was to evaluate factors associated with older adult’s readiness for PAC discharge to home. A prospective one-arm descriptive correlation study was conducted. Older adults (N=19) discharged from PAC to home participated. Subjects were recruited over a 3-month period from a large midwestern facility. Participants completed the Patient Readiness for Hospital Discharge -Short Form (PR RHDS-SF) and Patient Activation Measure (PAM). Medication burden, measured by the medication regimen complexity index (MRCI) calculated from discharge medication record. Participants included 12 females and 5 males, mean age of 73 (SD 8.2)) years. The PT RHDS -SF mean score was 49.3 (SD 16.8). The PAM mean score was 54.7 (SD 7.4). Medication burden was high, mean MRCI was 31.5 (SD 11.6). There was a significant correlation [r (17) .48, p=.04] between total PT RHDS-SF score and patient activation levels. Preparing PAC patients to self-manage their multimorbid conditions may enhance their self-confidence with transition from PAC to home. Evaluating self-management preparedness of older adults prior to PAC discharge is vastly understood. Research is needed to prepare multimorbid older adult patients transitioning from PAC to home focused on perceived readiness and self-management confidence.

Patients’ views and experiences on the supported self-management/patient-initiated follow up pathway for breast cancer

PurposeTo explore patients’ expectations and experience of Supportive Self-Management (SSM)/ Patient Initiated Follow Up (PIFU) following breast cancer treatments over a 12-month period.MethodsIn total, 32/110 (29%) patient participants in the PRAGMATIC (Patients’ experiences of a suppoRted self-manAGeMent pAThway In breast Cancer) study were interviewed at baseline, 3, 6, 9 and 12 months. Interviews in this sub-study used a mix-methods approach to explore understanding of the pathway, confidence in self-management, triggers to seek help and/or re-engage with the clinical breast team and impact of the COVID-19 pandemic. Responses to pre-assigned categories were summarised as counts/ percentages and collated in tabular or graphic format. Free responses were recorded verbatim and reviewed using framework analysis.ResultsParticipants regarded the SSM/PIFU pathway as a way to save time and money for them and the National Health Service (NHS) (14/32; 44%) and as a means of assuming responsibility for their own follow-up (18/32; 56%). Most maintained (very/somewhat) confidence in managing their BC follow-up care (baseline 31/32, 97%; 12 months 29/31, 93%). During the year, 19% (5/26) stopped endocrine therapy altogether because of side effects. Qualitative analysis revealed general satisfaction with SSM/PIFU and described the breast care nurses as reassuring and empathic. However, there was a lingering anxiety about identifying signs and symptoms correctly, particularly for those with screen-detected cancers. There was also uncertainty about who to contact for psychological support. The COVID-19 pandemic discouraged some participants from contacting the helpline as they did not want to overburden the NHS.ConclusionsThe results show that during the first year on the SSM/PIFU pathway, most patients felt confident managing their own care. Clinical teams should benefit from understanding patients’ expectations and experiences and potentially modify the service for men with BC and/or those with screen-detected breast cancers.

Patient Perspectives on a Tailored Self-Management Education and Support Intervention for Low-Income Seniors With Chronic Health Conditions

BackgroundThe Assessing Outcomes of Enhanced Chronic Disease Care Through Patient Education and a Value-based Formulary Study (ACCESS) was a 2 x 2 factorial randomized trial that tested the impact of a tailored self-management education support (SMES) program, which demonstrated a 22% reduction in adverse clinical events. We sought to qualitatively explore participants’ perspectives on the SMES intervention, and the ways in which it may have improved self-management skills. MethodsWe used a qualitative descriptive approach and conducted individual semistructured interviews. We conducted inductive and deductive thematic analysis using NVivo 12 (QSR International, Burlington, MA). ResultsWe interviewed 20 participants who had recently completed the 3-year SMES intervention. The following 3 main themes emerged from the data: (i) empowerment; (ii) intervention acceptability; and (iii) suggestions for improvement. Regarding empowerment, we identified subthemes of health literacy, self-efficacy, self-management, and active role in health. Several participants reported that empowerment promoted health behaviour change or improved confidence in self-management. Regarding acceptability, we identified subthemes of ease of use and presentation style. Most participants expressed positive feelings toward the intervention and felt that it was easy to understand. Finally, we identified subthemes of learning style, content, and engagement strategies, within the theme of suggestions for improvement. Some participants said that the messages were too general and did not fully address the complex health concerns they had. ConclusionsOur results highlighted key strategies to promote patient engagement and self-management behaviours and demonstrated how they may have been used to improve clinical endpoints. Additionally, we demonstrated the novel use of marketing principles in SMES interventions.

Implementation and evaluation of a longitudinal diabetes educational programme for adolescents

IntroductionInternational guidelines recommend structured and continuous educational programmes to expand diabetes knowledge and self-efficacy in youth. To address these recommendations within a paediatric diabetes clinic, we conducted a three-phase quality...

Supportive use of digital technologies during transition to adult healthcare for young people with long-term conditions, focusing on Type 1 diabetes mellitus: A scoping review.

Type 1 diabetes mellitus (T1DM) is the second most common chronic or long-term condition (LTC) affecting young people (YP); when transitioning from paediatric to adult healthcare, young people with LTCs such as T1DM are expected to self-manage medication, diet and clinical appointments. This scoping review aimed to analyse research examining ways digital health technologies were used to support YP with LTCs during transition from paediatric to adult healthcare and to establish YP's needs, experiences and challenges when transitioning. We aimed to identify knowledge gaps and inform development of a novel chatbot with components such as avatars and linked videos to help YP with T1DM gain self-management confidence and competence during transition. Nineteen studies identified through searching five electronic databases were included in this review. A combination of digital health technologies was used to support transition of YP with LTCs to adult healthcare. Barriers to successful transition were reported and YP described the importance of social relationships and transition readiness and expressed the need for individualised interventions that acknowledge social factors such as work and college. No supportive chatbots with components to help YP with T1DM were identified. This contribution will inform future development and evaluation of such a chatbot.

Identification of Core Outcome Domains and Design of a Survey Questionnaire to Evaluate Impacts of Digital Health Solutions That Matter to People With Diabetes.

Digital health solutions (DHS) are increasingly used to support people with diabetes (PwD) to help manage their diabetes and to gather and manage health and treatment data. There is a need for scientifically reliable and valid methods to measure the value and impact of DHS on outcomes that matter to PwD. Here, we describe the development of a survey questionnaire designed to assess the perceptions of PwD toward DHS and their prioritized outcomes for DHS evaluation. We applied a structured process for engagement of a total of nine PwD and representatives of diabetes advocacy organizations. Questionnaire development consisted of a scoping literature review, individual interviews, workshops, asynchronous virtual collaboration, and cognitive debriefing interviews. We identified three overarching categories of DHS, which were meaningful to PwD and crucial for the identification of relevant outcomes: (1) online/digital tools for information, education, support, motivation; (2) personal health monitoring to support self-management; (3) digital and telehealth solutions for engaging with health professionals. Overall outcome domains identified to be important were diabetes-related quality of life, distress, treatment burden, and confidence in self-management. Additional positive and negative outcomes specific to DHS were identified and corresponding questions were incorporated into the survey questionnaire. We identified the need for self-reporting of quality of life, diabetes distress, treatment burden, and confidence in self-management, as well as specific positive and negative impacts of DHS. We designed a survey questionnaire to further assess the perceptions and perspectives of people with type 1 and 2 diabetes on outcomes relevant for DHS evaluations.

Systematic review of patients' and healthcare professionals' views on patient-initiated follow-up in treated cancer patients.

Current follow-up models in cancer are seen to be unsustainable and inflexible, and there is growing interest in alternative models, such as patient-initiated follow-up (PIFU). It is therefore important to understand whether PIFU is acceptable to patients and healthcare professionals (HCPs). Standard systematic review methodology aimed at limiting bias was used for study identification (to January 2022), selection and data extraction. Thematic synthesis was undertaken for qualitative data, and survey findings were tabulated and described. Nine qualitative studies and 22 surveys were included, mainly in breast and endometrial cancer. Women treated for breast or endometrial cancer and HCPs were mostly supportive of PIFU. Facilitators for PIFU included convenience, control over own health and avoidance of anxiety-inducing clinic appointments. Barriers included loss of reassurance from scheduled visits and lack of confidence in self-management. HCPs were supportive of PIFU but concerned about resistance to change, unsuitability of PIFU for some patients and costs. PIFU is viewed mostly positively by women treated for breast or endometrial cancer, and by HCPs, but further evidence is needed from a wider range of cancers, men, and more representative samples. A protocol was registered with PROSPERO (CRD42020181412).

P170 Identifying predictors of axial spondyloarthritis flare onset using daily patient-reported data collected via a smartphone app

Abstract Background/Aims Smartphone apps for self-tracking symptoms and behaviour can offer novel insights into axial spondyloarthritis (axSpA) self-management and the experience of flares. Previous studies have predicted weekly flare occurrence in axSpA using physical activity data, and weekly flare occurrence in other rheumatic diseases using symptom data. However, no study has yet used daily flare, symptom and behaviour data to predict flare onset. The aims of this study were to examine the association between daily self-reported symptom and behaviour data with axSpA flare onset using data collected via a smartphone app. Methods A secondary analysis of 136 participants (Mage=52, 70% male) used clinical data collected at the Royal United Hospital for Rheumatic Diseases (Bath) and daily self-tracking data collected via the Project Nightingale smartphone app from 2018-21. Self-tracking data for 8 daily and 13 optional symptoms were scored on a 5-point scale. Participants recorded daily whether an axSpA flare started, continued, stopped or there was no flare. Paired t-tests were used to examine differences in symptoms during flare compared to non-flare days. A mixed effects binary logistic regression model was computed, with flare onset as the binary outcome, participant ID as the random effect, and the change (difference) in each symptom score from the preceding day as fixed effects. Odds ratios (OR) are reported to indicate the increased likelihood of flare onset given a one-point change in symptom score. Results Periods of flare were associated with greater anti-inflammatory use, lower confidence in self-management, more fatigue, worse mood, more pain, reduced exercise, worse sleep quality, and greater stress (p<.001), and lower adherence, more frequent chest pain, more hot flushes and greater impact of the menstrual cycle (p<.01) compared to periods without flare. The predictive model found that changes in certain symptoms and behaviours from the day preceding flare were associated with higher likelihood of flare onset: increased pain score (OR = 3.13, 95% CI [2.70, 3.70]), fatigue score (OR = 1.28, 95% CI [1.15, 1.43]) and anti-inflammatory use (OR = 1.25, 95% CI [1.08, 1.45]), and decreased amount of exercise (OR = 1.16, 95% CI [1.05, 1.30]). Conclusion This is the first study to use daily flare and symptom data to predict flare occurrence. Increases in pain, fatigue and anti-inflammatory use and decreased exercise from the day preceding flare significantly increased the likelihood of flare onset. Potential future integration of predictive flare features into smartphone apps for disease self-management could contribute to more effective prevention and targeting of imminent flares, to enhance individuals’ self-efficacy, disease outcomes and quality of life. Critically, such app development will require consideration of the needs and perspectives of people living with axSpA for optimal user experience. Disclosure A. Kypta-Vivanco: None. R. Barnett: None. R. Sengupta: Honoraria; Dr. Raj Sengupta has received honoraria or consultancy fees from Abbvie, Biogen, Novartis, Celgene, Lilly, Chugai, MSD and UCB. Grants/research support; Dr. Raj Sengupta has received grants/ research support from AbbVie, Celgene, Novartis and UCB. Other; Dr Raj Sengupta is also on the advisory boards for AbbVie, Biogen, Chugai, Lilly, Novartis and UCB.

IMPlementing IMProved Asthma self-management as RouTine (IMP2ART) in primary care: study protocol for a cluster randomised controlled implementation trial

BackgroundAsthma is a common long-term condition and major public health problem. Supported self-management for asthma that includes a written personalised asthma action plan, supported by regular professional review, reduces unscheduled consultations and improves asthma outcomes and quality of life. However, despite unequivocal inter/national guideline recommendations, supported self-management is poorly implemented in practice. The IMPlementing IMProved Asthma self-management as RouTine (IMP2ART) implementation strategy has been developed to address this challenge. The aim of this implementation trial is to determine whether facilitated delivery of the IMP2ART strategy increases the provision of asthma action plans and reduces unscheduled care in the context of routine UK primary care.MethodsIMP2ART is a parallel group, cluster randomised controlled hybrid II implementation trial. One hundred forty-four general practices will be randomly assigned to either the IMP2ART implementation strategy or control group. Following a facilitation workshop, implementation group practices will receive organisational resources to help them prioritise supported self-management (including audit and feedback; an IMP2ART asthma review template), training for professionals and resources to support patients to self-manage their asthma. The control group will continue with usual asthma care. The primary clinical outcome is the between-group difference in unscheduled care in the second year after randomisation (i.e. between 12 and 24 months post-randomisation) assessed from routine data. Additionally, a primary implementation outcome of asthma action plan ownership at 12 months will be assessed by questionnaire to a random sub-group of people with asthma. Secondary outcomes include the number of asthma reviews conducted, prescribing outcomes (reliever medication and oral steroids), asthma symptom control, patients’ confidence in self-management and professional support and resource use. A health economic analysis will assess cost-effectiveness, and a mixed methods process evaluation will explore implementation, fidelity and adaptation.DiscussionThe evidence for supported asthma self-management is overwhelming. This study will add to the literature regarding strategies that can effectively implement supported self-management in primary care to reduce unscheduled consultations and improve asthma outcomes and quality of life.Trial registrationISRCTN15448074. Registered on 2 December 2019.

Improving Diabetes Care Through Population Health Innovations and Payments: Lessons from Western Maryland.

Global budgets might incentivize healthcare systems to develop population health programs to prevent costly hospitalizations. In response to Maryland's all-payer global budget financing system, University of Pittsburgh Medical Center (UPMC) Western Maryland developed an outpatient care management center called the Center for Clinical Resources (CCR) to support high-risk patients with chronic disease. Evaluate the impact of the CCR on patient-reported, clinical, and resource utilization outcomes for high-risk rural patients with diabetes. Observational cohort study. One hundred forty-one adult patients with uncontrolled diabetes (HbA1c > 7%) and one or more social needs who were enrolled between 2018 and 2021. Team-based interventions that provided interdisciplinary care coordination (e.g., diabetes care coordinators), social needs support (e.g., food delivery, benefits assistance), and patient education (e.g., nutritional counseling, peer support). Patient-reported (e.g., quality of life, self-efficacy), clinical (e.g., HbA1c), and utilization outcomes (e.g., emergency department visits, hospitalizations). Patient-reported outcomes improved significantly at 12 months, including confidence in self-management, quality of life, and patient experience (56% response rate). No significant demographic differences were detected between patients with or without the 12-month survey response. Baseline mean HbA1c was 10.0% and decreased on average by 1.2 percentage points at 6 months, 1.4 points at 12 months, 1.5 points at 18 months, and 0.9 points at 24 and 30 months (P<0.001 at all timepoints). No significant changes were observed in blood pressure, low-density lipoprotein cholesterol, or weight. The annual all-cause hospitalization rate decreased by 11 percentage points (34 to 23%, P=0.01) and diabetes-related emergency department visits also decreased by 11 percentage points (14 to 3%, P=0.002) at 12 months. CCR participation was associated with improved patient-reported outcomes, glycemic control, and hospital utilization for high-risk patients with diabetes. Payment arrangements like global budgets can support the development and sustainability of innovative diabetes care models.

A Mobile Phone Text Messaging Intervention to Manage Fatigue for People With Multiple Sclerosis, Spinal Cord Injury, and Stroke: Development and Usability Testing.

Fatigue significantly affects daily functioning in persons with disabilities. Fatigue management can be challenging, and the information provided during routine physician visits to manage fatigue can be overwhelming. One way to address fatigue is to increase knowledge, skills, and confidence for self-management (ie, patient activation). Self-management programs have shown promising effects in targeting fatigue in persons with disabilities. However, satisfaction with self-management programs is low for persons with disabilities, and tailoring interventions to personalized needs has been recommended. SMS text messaging is increasingly being used to implement health behavior change interventions in a person's natural environment. Little has been done to link mobile health approaches with patient activation and self-management to address fatigue in persons with disabilities. This study aimed to develop and test a mobile phone-based fatigue self-management SMS text messaging intervention targeting patient activation in 3 groups of persons with disabilities: persons with multiple sclerosis, persons who had a stroke, and persons with a spinal cord injury. We used evidence-based resources and input from a consumer advisory board (CAB; composed of 2 participants from each of the 3 disability groups) and a neurologist to develop the intervention. The study was conducted using a 4-step process: development of the initial SMS text messaging library and categorization of the content into 9 content areas, review and modification of the SMS text messages by the neurologist and CAB, integration of the content library into a digital platform, and utility testing by CAB members. A total of 6 CAB participants rated SMS text messages covering 9 domain areas of fatigue self-management with good clarity (mean ratings=3.5-5.0 out of 5) and relevance (mean ratings=3.2-5.0 out of 5). Overall, SMS text messaging content was reported by CAB participants as helpful, clear, and well suited for a mobile health intervention. The CAB reached consensus on the time of day that SMS text messages should be sent (morning) and their frequency (once per day). This feedback led the research team to narrow down the program to deliver 48 SMS text messages, 1 per day, Monday through Thursday only, a total of 4 SMS text messages per week, over a 12-week period. The final set of SMS text messages was programmed into a digital platform with a predefined delivery schedule. The usability of the intervention was high, with 55 (83%) out of 66 responses endorsing the highest rating. This study demonstrates a step-by-step process for developing a fatigue self-management SMS text messaging intervention for persons with disabilities. For this population, whose access to health services is often limited, this intervention provides an alternative delivery model to increase access to fatigue information and deliver content that aligns with the person's needs.

Physical Activity, Psychological and Functional Outcomes in Non-Ambulatory Stroke Patients during Rehabilitation-A Pilot Study.

Despite the extensive literature on stroke rehabilitation, there are few studies that comprehensively show non-ambulatory stroke patients. The aim of the study was to explore the dynamics of the change in physical activity (PA), psychological and functional outcomes, and the correlation between them in non-ambulatory patients during early in-patient post-stroke rehabilitation. Measurements were taken on 21 participants at the beginning of and 6 weeks post-conventional rehabilitation with the Barthel Index (BI), Berg Balance Scale (BBS), Trunk Control Test (TCT), Stroke Impact Scale (SIS), General Self-Efficacy Scale, Stroke Self-Efficacy Questionnaire (SSEQ), the original scale of belief in own impact on recovery (BiOIoR), Hospital Anxiety and Depression Scale, Acceptance of Illness Scale and when the patient could walk—Time Up & Go and 6 Minute Walk Test. Daily PA was assessed over 6 weeks using a Caltrac accelerometer. Only outcomes for BI, BBS, TCT, SIS, and SSEQ significantly improved 6 weeks post-rehabilitation. PA energy expenditure per day significantly increased over time (p < 0.001; effect size = 0.494), but PA only increased significantly up to the third week. PA change was correlated with BiOIoR post-treatment. Self-efficacy in self-management mediated improvement in SIS. The BiOIoR and confidence in self-management could be important factors in the rehabilitation process.

Living with vulval lichen sclerosus: a qualitative interview study.

Vulval lichen sclerosus (VLS) is a chronic inflammatory condition predominantly affecting the anogenital skin. Symptoms can be distressing and affect quality of life and everyday activities. Very little research has been undertaken to explore the experience of living with VLS from the perspective of people with the condition. To understand individuals' experiences of VLS and its impact on their lives. Semi-structured remote (telephone or video) interviews were conducted with a purposive sample of 20 women living in the UK with VLS recruited via online support groups and social media. Data collection and analysis was informed by social constructionist grounded theory, using a constant comparison method. We developed three themes to interpret the experience of living with VLS: missed opportunities (participants experienced delayed diagnosis, lack of information and disempowering encounters with healthcare professionals); learning to live with a long-term condition (the amount of work involved in learning how to self-manage the disease and the impact on everyday life); a secret life (experiences of the condition were often shrouded in secrecy, and there was stigma associated with a vulval skin condition resulting in them feeling isolated and lonely). Patients attending healthcare appointments with vulval complaints should be examined and LS should be considered as a diagnosis. Healthcare professionals' awareness and knowledge of VLS needs to be improved and they should avoid language which is blaming or minimizing of patients' experiences. VLS is a chronic condition and patients need to be supported in self-management. Support groups may be a source of support and information but can also be challenging when hearing others' difficult experiences. Wider public health educational activities are needed to change societal attitudes towards female genitals and tackle the stigma around vulval conditions. What is already known about this topic? Vulval lichen sclerosus (VLS) can have a profound impact on quality of life and self-identity but is relatively underexplored from the perspective of those living with the condition. What does this study add? In-depth findings about the experiences of living with VLS including ongoing issues with timely diagnosis, learning to live with a long-term condition and the secrecy and stigma about the condition. The needs of women with symptoms of and diagnoses of VLS are not being met sufficiently by the healthcare system. What are the clinical implications of this work? Healthcare professionals should consider addressing knowledge gaps in vulval conditions including VLS to prevent delayed diagnosis and avoid the use of certain terminology which can minimize patients' experiences. Patients with vulval complaints should be examined and LS should be considered as a diagnosis. Regular follow-up would reflect its chronic nature and could provide patients with reassurance and confidence in self-management. Wider public health activities are needed to change societal attitudes and tackle stigma around vulval conditions.

A process and impact evaluation of a peer-led HIV self-management program

There is evidence that people with HIV (PWH) receive health-related benefits from having peer support and learning self-management skills. This evaluation assessed the effect of The Positive Life Workshop (TPLW)—a 7-session peer-led HIV self-management program—on psychosocial and HIV treatment outcomes. The overall sample included 1360 PWH who completed TPLW during 3/2015–2/2019. Surveys were administered before and after the program, and three months following program completion. Analyses examined changes in outcomes from pre-test to both post-test and 3-month follow-up using non-parametric tests. Subgroup analyses were conducted for 406 participants with ≥ 1 characteristic of the priority population for TPLW (i.e., recent HIV diagnosis, not taking antiretroviral therapy (ART), suboptimal ART adherence, unsuppressed viral load). In the overall sample, there were statistically significant improvements in HIV-related knowledge, social support, patient self-advocacy, and confidence in self-management between pre-test and post-test/3-month follow-up assessment. Analyses for the priority population showed significant increases from pre-test to 3-month follow-up in the proportion of participants who were ≥ 90 % adherent to ART (59–83 %, p < 0.01) and virally suppressed (42 % to 66 %, p < 0.01). The findings suggest the importance of ensuring HIV self-management interventions reach vulnerable populations of PWH who struggle with initiating and maintaining HIV-related health-promoting behaviors.

Factors influencing self-management behavior during the “Blanking Period” in patients with atrial fibrillation: A cross-sectional study based on the information-motivation-behavioral skills model

BackgroundAtrial fibrillation (AF) is becoming increasingly common. Effective self-management during the “Blanking Period” is critical. The Information-Motivation-Behavioral skills (IMB) model can be used to study health behaviors in chronic disease patients, but it has not been studied in AF patients. ObjectiveThe goal of this study was to explore the influencing factors and interaction pathways of self-management behavior in AF patients during the "Blanking Period" using the IMB model. MethodsFrom June to December 2021, a cross-sectional design was conducted. Patients with AF during the "Blanking Period" (N=220) were recruited. They filled out several quantitative questionnaires, including the Jessa Atrial Fibrillation Knowledge Questionnaire, the Confidence in Atrial Fibrillation Management Scale, the Perceived Social Support Scale, the All Aspects of Health Literacy Scale, and the Self-care Scale for Chronic Atrial Fibrillation Patients. Data were analyzed using correlation analysis, multiple regression analysis, and path analysis. ResultsTotal score of self-management behavior was (33.83 ± 10.66). AF knowledge (β = 0.252, P < 0.001), self-management confidence (β = 0.219, P < 0.001), social support (β = 0.291, P < 0.001), and health literacy (β = 0.262, P < 0.001) were all positively correlated with patients' self-management behavior, accounting for 66.50 percent of the total variance. ConclusionsDuring the "Blanking Period", the IMB model can be used to predict the factors that influence self-management behavior in AF patients. By using IMB model, interventions targeting patient-specific influencing factors could improve self-management behavior and quality of life in AF patients.