Transitional care for patients with acute stroke—A priority‐setting project

BackgroundThe scope of this priority‐setting process is communication and collaboration in transitional care for patients with acute stroke. Actively involving persons with stroke and their family caregivers is important both in transitional care and when setting priorities for research. Established priority‐setting methods are time‐consuming and require extensive resources. They are therefore not feasible in small‐scale research. This article describes a pragmatic priority‐setting process to identify a prioritized top 10 list of research needs regarding transitional care for patients with acute stroke.MethodsA pragmatic priority‐setting approach inspired by the James Lind Alliance was developed. It involves establishing a user group, identifying the research needs through an online survey, analysing and checking the research needs against systematic reviews, culminating in an online prioritization of the top 10 list.ResultsThe process was completed in 7 months. A total of 122 patients, family caregivers, health personnel and caseworkers submitted 484 research needs, and 19 users prioritized the top 10 list. The list includes the categories ‘patients and caregivers’ needs and health literacy’, ‘health personnel''s common understanding’, ‘information flow between health personnel and patients and caregivers’, ‘available interventions and follow‐up of patients and caregivers’, ‘interaction and collaboration between health personnel and caseworkers across hospital and primary healthcare’ and ‘disabilities after stroke’.ConclusionThis paper outlines a pragmatic approach to identifying and prioritizing users'' research needs that was completed in 7 months. The top 10 list resulting from this priority setting process can guide future research relating to communication and collaboration during the transition from hospital to the community for patients with stroke.Patient and Public ContributionMembers of three stroke organizations participated in the advisory group. They gave feedback on the scope and the process, distributed the surveys and prioritized the top 10 list. Persons with stroke and their caregivers submitted research needs in the survey.     

Disability,coping and quality of life in individuals with muscular dystrophy: a prospective study over five years

Purpose : The present study investigates progressive muscular dystrophy over a five year period. The purpose is twofold: to describe changes over time and to investigate relations between disability, coping and quality of life. Method : The study group comprised 45 adults (16 men and 29 women), with an average age of 44 years. All were assessed in 1991 and 1996, with the following instruments: the ADL staircase, the Self-report ADL, the Mental Adjustment to Cancer scale, the Sickness Impact Profile and the Psychosocial well-being questionnaire (Kaasa). Results : Increasing disability was accompanied by an increase in dependence on others and a significant deterioration of health-related quality of life and with regard to 'Satisfaction'. The predominant type of coping was 'Fighting spirit', whilst 'Fatalism' showed the greatest decline over time. 'Ambulation' and the ADL staircase correlated with 'Physical index' on the SIP. Correlations between disability, coping and quality of life were moderate. The results can serve as a basis for planning and evaluation of recurring rehabilitation for persons with MD.