Although increased efforts have been made, rheumatoid arthritis still leads to severe disability and dependence on external help in about one-third of the patients. Relatively little is known on how help-dependent RA patients manage everyday life, to what extent they need help, by whom the help is given, what the patients' future help perspectives are and what kind of patient- and resource-related characteristics are associated with unmet need.
By means of standardized interviews a representative sample of severly disabled RA patients was investigated with respect to present life situation, functional capacity, amount of help needed, relationship of caregiver and patient, health status of caregiver, stability of the help situation, housing preferences and help-seeking behaviour. The patients were classified as being either in definite need of help or independent of external help.
Patients with comparable disabilities living on their own had only one-third of the help of those living together with others. They received help slightly more often from non-family caregivers, such as visiting nurses or privately paid household help, than from family members. Although many patients had rather uncertain perspectives for the future, the majority vehemently rejected living in a retirement home or in a home for the disabled. This refusal to live in an institution was independent of functional capacity, adequacy of the present help situation and the financial situation. Unmet need was highly associated with the age and health status of the caregiver as well as the help-seeking behaviour of the dependent person, but not with functional status or available resources.
Given an appropriate home, the majority of conditions for a self-determined life for help-dependent RA patients are satisfied by the present outpatient help and care systems in Germany, but patients and their care givers need to be encouraged to take advantage of the available help and care facilities.