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Purpose: This study aimed to gain knowledge about environmental factors (EFs) that impact work and social life participation of people with multiple sclerosis (MS) in Austria and Switzerland to extend the knowledge of participation and to identify key areas for measuring participation.
Method: A three-round Delphi study was conducted defining patients as experts. In the 1st round, qualitative data was gathered through questionnaires, analyzed with content analysis, and factors were assigned to EFs as classified in the ICF. In the 2nd and 3rd round, experts judged EFs according to its relevance to obtain consensus (cut-off 75%). Categories were ranked on a scale from mostly important to important.
Results: One hundred and twelve Austrian and 109 Swiss experts were recruited. The content analysis revealed 768 EFs. The study resulted in a list of 176 consensus factors for Austria and 177 Switzerland. Five categories revealed to be highly important, 12 moderately important, 6 fairly important, and 10 important.
Conclusions: This study indicates that participation in work or social life is influenced by physical, social, attitudinal, and policy factors. Consensus factors afford insights into areas for consideration in the development of participation outcome measurements and support a comprehensive and inclusive rehabilitation approach.
Background
Self-reported outcome instruments in health research have become increasingly important over the last decades. Occupational therapy interventions often focus on occupational balance. However, instruments to measure occupational balance are scarce. The aim of the study was therefore to develop a generic self-reported outcome instrument to assess occupational balance based on the experiences of patients and healthy people including an examination of its psychometric properties.
Methods
We conducted a qualitative analysis of the life stories of 90 people with and without chronic autoimmune diseases to identify components of occupational balance. Based on these components, the Occupational Balance-Questionnaire (OB-Quest) was developed. Construct validity and internal consistency of the OB-Quest were examined in quantitative data. We used Rasch analyses to determine overall fit of the items to the Rasch model, person separation index and potential differential item functioning. Dimensionality testing was conducted by the use of t-tests and Cronbach’s alpha.
Results
The following components emerged from the qualitative analyses: challenging and relaxing activities, activities with acknowledgement by the individual and by the sociocultural context, impact of health condition on activities, involvement in stressful activities and fewer stressing activities, rest and sleep, variety of activities, adaptation of activities according to changed living conditions and activities intended to care for oneself and for others. Based on these, the seven items of the questionnaire (OB-Quest) were developed. 251 people (132 with rheumatoid arthritis, 43 with systematic lupus erythematous and 76 healthy) filled in the OB-Quest. Dimensionality testing indicated multidimensionality of the questionnaire (t = 0.58, and 1.66 after item reduction, non-significant). The item on the component rest and sleep showed differential item functioning (health condition and age). Person separation index was 0.51. Cronbach’s alpha changed from 0.38 to 0.57 after deleting two items.
Conclusions
This questionnaire includes new items addressing components of occupational balance meaningful to patients and healthy people which have not been measured so far. The reduction of two items of the OB-Quest showed improved internal consistency. The multidimensionality of the questionnaire indicates the need for a summary of several components into subscales.
Objective: To explore patients’ and health professionals’ views of outpatient rehabilitation services for patients with rheumatoid arthritis in 3 different rheumatology sites across Europe.
Methods: A qualitative multi-method study was conducted with patients and health professionals in Vienna (Austria), Gothenburg (Sweden) and Leeds (UK). Data collection was carried out during focus groups with patients and health professionals. Patients’ hospital records were integrated into the analysis. Data were analysed for site and findings were compared across sites.
Results: A total of 20 patients and 20 health professionals participated in 12 focus groups. Although the 3 sites were all publicly funded university clinics, there were differences between sites regarding the structure and content of rehabilitation services. The themes that emerged in the focus groups were: referrals; continuity in rehabilitation; information provided to patients; patients’ organizations; documentation and communication amongst health professionals; interface between primary and specialist care; and prescription practices. Most themes were addressed at all 3 sites, but there were variations in the specifics within themes.
Conclusion: Integration of patients’ and health professionals’ views on how rehabilitation services are coordinated and how (parts of) processes are set up elsewhere provide valuable information for the further optimization of rehabilitation services.