Unmet care demands as perceived by stroke patients: deficits in health care?

To describe unmet care demands as perceived by stroke patients and to identify sociodemographic and health characteristics associated with these unmet demands to investigate the appropriateness of health care.

Sample of patients who participated in a multicentre study (23 hospitals) on quality of care in The Netherlands.

Non-institutionalised patients who had been admitted to hospital because of stroke. Patients were interviewed six months (n = 382) and five years (n = 224) after stroke.

Six months after stroke data were collected on: (a) sociodemographic characteristics in terms of age, sex, living arrangement, educational level, and regional level of urbanisation; (b) health characteristics in terms of cognitive function, disability, emotional distress, and general health perception; (c) utilisation of professional care; and (d) unmet care demands as perceived by patients. Data on utilisation of care and unmet demands were also collected five years after stroke. Data were collected from June 1991 until December 1996.

The percentage of unmet care demands was highest at six months after stroke (n = 120, 31%). Multiple logistic regression analyses showed that disabled patients were more likely to be unmet demanders for therapy, (I)ADL care and aids (range odds ratio (OR) = 3.5 to 7.9) than to be no demanders, whereas emotionally distressed patients were more likely to be unmet demanders for psychosocial support (OR = 3.8). When comparing unmet demanders with care users only for (instrumental) activities of daily living (I)ADL care differences were found: men (OR = 3.8), disabled patients (OR = 3.0), and emotionally distressed patients (OR = 6.5) were more likely to be users.

Patients who perceived an unmet care demand do appear genuinely to have an unmet care need as supported by assessment of their health status: (a) types of unmet care demands correspond with types of health problems and (b) unmet demanders were in general unhealthier than no demanders and more comparable with care users for health characteristics.

To improve an equitable distribution of healthcare services, guidelines for indicating and allocating health care have to be developed and should be based on scientific evidence and consensus meetings including professionals' and patients' perspectives.