Guide Development for eHealth Interventions Targeting People With a Low Socioeconomic Position: Participatory Design Approach.

BACKGROUND: People with a low socioeconomic position (SEP) are less likely to benefit from eHealth interventions, exacerbating social health inequalities. Professionals developing eHealth interventions for this group face numerous challenges. A comprehensive guide to support these professionals in their work could mitigate these inequalities. OBJECTIVE: We aimed to develop a web-based guide to support professionals in the development, adaptation, evaluation, and implementation of eHealth interventions for people with a low SEP. METHODS: This study consisted of 2 phases. The first phase involved a secondary analysis of 2 previous qualitative and quantitative studies. In this phase, we synthesized insights from the previous studies to develop the guide's content and information structure. In the second phase, we used a participatory design process. This process included iterative development and evaluation of the guide's design with 11 professionals who had experience with both eHealth and the target group. We used test versions (prototypes) and think-aloud testing combined with semistructured interviews and a questionnaire to identify design requirements and develop and adapt the guide accordingly. RESULTS: The secondary analysis resulted in a framework of recommendations for developing the guide, which was categorized under 5 themes: development, reach, adherence, evaluation, and implementation. The participatory design process resulted in 16 requirements on system, content, and service aspects for the design of the guide. For the system category, the guide was required to have an open navigation strategy leading to more specific information and short pages with visual elements. Content requirements included providing comprehensible information, scientific evidence, a user perspective, information on practical applications, and a personal and informal tone of voice. Service requirements involved improving suitability for different professionals, ensuring long-term viability, and a focus on implementation. Based on these requirements, we developed the final version of "the inclusive eHealth guide." CONCLUSIONS: The inclusive eHealth guide provides a practical, user-centric tool for professionals aiming to develop, adapt, evaluate, and implement eHealth interventions for people with a low SEP, with the aim of reducing health disparities in this population. Future research should investigate its suitability for different end-user goals, its external validity, its applicability in specific contexts, and its real-world impact on social health inequality.

Daily patterns of fatigue after subarachnoid haemorrhage: an ecological momentary assessment study.

OBJECTIVE: To examine the daily course of, and factors associated with, momentary fatigue after subarachnoid haemorrhage, and to explore subgroups of patients with distinct diurnal patterns of fatigue. DESIGN: Observational study using ecological momentary assessment. SUBJECTS: A total of 41 participants with subarachnoid haemorrhage. METHODS: Patients with fatigue were included within one year post-onset. Momentary fatigue (scale 1-7) was assessed with repeated measurements (10-11 times/day) during 7 consecutive days. Multilevel-mixed-model analyses and latent-class trajectory modelling were conducted. RESULTS: Mean (standard deviation; SD) age of the group was 53.9 (13.0) years, 56% female, and mean (SD) time post-subarachnoid haemorrhage onset was 9.3 (3.2) months. Mean (SD) momentary fatigue over all days was 3.22 (1.47). Fatigue increased significantly (p < 0.001) over the day, and experiencing more burden of fatigue and day type (working day vs weekend day) were significantly (p < 0.05) associated with higher momentary fatigue. Three subgroups could be distinguished based on diurnal patterns of fatigue. The largest group (n = 17, 41.5%) showed an increasing daily pattern of fatigue. CONCLUSION: Momentary fatigue in patients with subarachnoid haemorrhage increases over the day, and diurnal patterns of fatigue differ between  participants. In addition to conventional measures, momentary measures of fatigue might provide valuable information for physicians to optimize personalized management of fatigue after subarachnoid haemorrhage.

Unraveling the interplay between daily life fatigue and physical activity after subarachnoid hemorrhage: an ecological momentary assessment and accelerometry study.

BACKGROUND: Fatigue is one of the most commonly reported symptoms after subarachnoid hemorrhage (SAH) and is indirectly associated with physical activity (PA). Associations between fatigue and PA are primarily examined based on conventional measures (i.e. a single fatigue score or average PA levels), thereby assuming that fatigue and PA do not fluctuate over time. However, levels of fatigue and PA may not be stable and may interrelate dynamically in daily life. Insight in direct relationships between fatigue and PA in daily life, could add to the development of personalized rehabilitation strategies. Therefore we aimed to examine bidirectional relationships between momentary fatigue and PA in people with SAH. METHODS: People (n = 38) with SAH who suffer from chronic fatigue were included in an observational study using Ecological Momentary Assessment (EMA) and accelerometry. Momentary fatigue was assessed on a scale from 1 to 7 (no to extreme fatigue), assessed with 10-11 prompts per day for 7 consecutive days using EMA with a mobile phone. PA was continuously measured during this 7-day period with a thigh-worn Activ8 accelerometer and expressed as total minutes of standing, walking, running and cycling in a period of 45 min before and after a momentary fatigue prompt. Multilevel mixed model analyses including random effects were conducted. RESULTS: Mean age was 53.2 years (SD = 13.4), 58% female, and mean time post SAH onset was 9.5 months (SD = 2.1). Multilevel analyses with only time effects to predict fatigue and PA revealed that fatigue significantly (p < 0.001) increased over the day and PA significantly (p < 0.001) decreased. In addition, more PA was significantly associated with higher subsequent fatigue (ß = 0.004, p < 0.05) and higher fatigue was significantly associated with less subsequent PA (ß=-0.736, p < 0.05). Moreover, these associations significantly differed between participants (p < 0.001). CONCLUSIONS: By combining EMA measures of fatigue with accelerometer-based PA we found that fatigue and PA are bidirectionally associated. In addition, these associations differ among participants. Given these different bidirectional associations, rehabilitation aimed at reducing fatigue should comprise personalized strategies to improve both fatigue and PA simultaneously, for example by combining exercise therapy with cognitive behavioral and/or energy management therapy.

Multimorbidity risk assessment in adolescents and adults with cerebral palsy: a protocol for establishing a core outcome set for clinical research and practice.

BACKGROUND: Estimates of multimorbidity, defined as the presence of at least two chronic conditions, some of which attributable to modifiable behaviours, are high in adults with cerebral palsy (CP). An assessment protocol evaluating multimorbidity risk is needed in order to develop and evaluate effective interventions to optimize lifelong health in individuals with CP. The aim of this protocol paper is to describe the development of a core outcome set (COS) for assessing multimorbidity risk in adolescents and adults with CP, to be used in clinic and research. METHODS: The expert consortium will first define the target population and outcomes to be measured. Through a process of literature review and an international Delphi survey with expert clinicians and researchers, we will then determine which outcome measurement instruments (OMIs) can best measure those outcomes. The resulting OMIs will be used in a feasibility study with adolescents and adults with CP from an international clinical research network. Finally, a face-to-face stakeholder meeting with adolescents and adults with CP, their families/caregivers and researchers and clinicians who are experts in CP, will be organized to reach final agreement on the COS. DISCUSSION: This COS will guide clinicians and researchers in assessing multimorbidity risk in adolescents and adults with CP. The inclusion of experts and individuals with CP from international locations for establishing the COS lends strong support to its generalizability. Evidence of its feasibility and approval from all stakeholders will enable implementation in clinical practice, and guide future research using the COS in individuals with CP.

Promoting physical activity in an adolescent and a young adult with physical disabilities.

BACKGROUND: We sought to describe the design of the Active Lifestyle and Sports Participation (ALSP) intervention for adolescents and young adults with physical disabilities, and to present the first 2 cases. METHODS: A 17-year-old boy with myelomeningocele and hydrocephalus and a 23-year-old woman with unilateral cerebral palsy were enrolled into the ALSP intervention, a personalized intervention designed to improve physical activity and fitness levels. Main outcome measures were self-reported physical activity and aerobic fitness. Fitness was determined by submaximal 6-minute walk or wheel test and by maximal cycle or arm ergometer-exercise test. Participants rated satisfaction with the intervention on a Likert-type numeric scale from 1 to 10. RESULTS: Improvements in self-reported physical activity were 51% and 75% for the male and female participant, respectively. Respective improvements in submaximal exercise were 16% and 9%. Maximal exercise increased 39% in the male participant but did not increase in the female participant. Satisfaction with the intervention was rated moderate-good to excellent. CONCLUSION: Data for the first 2 cases suggested that ALSP intervention seemed feasible to offer in an outpatient rehabilitation department, and the effectiveness may be promising. Future studies should determine the short- and long-term effectiveness of the intervention.