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Most Help-Dependent Rheumatoid Arthritis Patients Reject Institutional Living

The current outpatient system for help-dependent rheumatoid arthritis patients in Germany satisfies all the conditions for them to lead a self-determined life.

Researchers note, however, that these patients and their caregivers are not taking advantage of the help and care facilities available.

Researchers in Berlin undertook standardized interviews among a representative group of severely disabled patients with rheumatoid arthritis.

They investigated the present situation relative to quality of life, functional capacity, amount of assistance required, relationship of caregiver and patient, health of the caregiver, stability of the help situation, preference in housing and help-seeking behaviour.

Patients were classified according to definite need for help or independence from external help.

Those who lived alone received only a third of the help given to patients living together but with comparable disabilities. Help was given by non-family carers slightly more often, exemplified by visiting nurses or privately paid help, than by relatives.

Despite their uncertainty about the future, there was a vehement rejection among the majority of patients regarding living in either a retirement home or accommodation for the disabled. Their rejection of institutional accommodation was independent of functional capacity, adequacy of present help and financial situation.

There was a high association between caregiver age and health status and help-seeking behaviour of the dependent patient, but not with functional status or available resources.
Rheumatology 2001 Vol 60 No 1 pp 28-40. "Help situation and help perspective of severely disabled RA patients"

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