Arthritis & Rheumatism, Volume 62,
November 2010 Abstract Supplement
Abstracts of the American College of
Rheumatology/Association of Rheumatology Health Professionals
Annual Scientific Meeting
Atlanta, Georgia November 6-11, 2010.
Future Expectations and Worst Case Scenarios of Patients with Rheumatoid Arthritis: A Focus Group Study in Patients.
Buitinga3, Laurien, Braakman-Jansen1, Louise M. A., Taal2, Erik, Van de Laar4, Mart A. F. J.
Rheumatoid Arthritis (RA) has a great impact on patients' daily lives. Because of the unpredictable progressive nature of the disease, it is imaginable that people worry about the impact of their disease in the future. Many studies have shown the prevalent difficulties patients experience now. Little attention has been paid to future expectations in RA.
To examine future expectations, and to reveal worst case future scenarios in patients with RA.
A qualitative focus group approach was used. Three heterogeneous focus groups of RA patients were composed on the basis of age group (1840, 4065, 6580), gender and having a paid job or not. Eventually, 16 people participated. Transcripts were individually coded by three researchers, including the moderator and note-taker. Participants were asked about their future expectations and worst case future scenarios. Afterwards, the codes were discussed until agreement was reached about all codes. For categorization of the coded expressions, a distinction was made between body functions and structures, activity participation, environmental factors and personal factors, in line with the International Classification of Functioning, Disability and Health (ICF).
This qualitative study revealed that people expected the impact of their RA to be the same or to deteriorate slightly in the future, also in relation to the process of aging. Most people expressed hope for the future and positive feelings because of continuously improving medication. However, also feelings of uncertainty and fears were expressed about the future course of the disease. A major concern was about becoming dependent on others. One of the focus groups particularly expressed concerns about becoming dependent on others with regard to self-care (e.g. toileting, bathing). Concerns were also raised about side effects of medication and losing mobility. For many participants, becoming dependent on others would be the worst imaginable RA-related future scenario, for one participant it would be even worse than dead.
In this study, dependency on others was the most prevailing RA-related worst case future scenario. Many participants expressed their concerns in relation to dependency side effects of medication and losing mobility. Although pain was a prevalent symptom in daily life, no future concerns about pain were raised. Most people in these focus groups also held a positive view of the future because of continuously improving medication.
To cite this abstract, please use the following information:
Buitinga, Laurien, Braakman-Jansen, Louise M. A., Taal, Erik, Van de Laar, Mart A. F. J.; Future Expectations and Worst Case Scenarios of Patients with Rheumatoid Arthritis: A Focus Group Study in Patients. [abstract]. Arthritis Rheum 2010;62 Suppl 10 :2281