Stroke in the under-75S: Expectations, concerns and needs

AbstractMost studies of functional outcomes in hemiplegic stroke patients use standard disability rating scales (such as the Barthel Index). However, planning the allocation of assistance and resources requires additional information about these patients’ expectations and needs.Aims of the studyTo assess functional independence in daily living and house holding, changes in home settings, type of technical aid and human helps, and expectations in hemiplegic patients 1 to 2 years after the stroke.MethodsSixty-one out of 94 patients admitted to the neurovascular unit of French university hospital for a first-ever documented stroke were consecutively enrolled. The study was restricted to patients under 75, since patients over 75 do not follow the same care network. Patients were examined at their homes or interviewed by phone 17 months (on average) after the stroke. Standard functional assessment tools (such as the Barthel Index and the instrumental activities of daily living [IADL] score) were recorded, along with descriptions of home settings and instrumental and human help. Lastly, patients and caregivers were asked to state their expectations and needs.ResultsAlthough only one person was living in a nursing home after the stroke, 23 (34%) of the other interviewees had needed to make home adjustments or move home. Seven patients (11%) were dependent in terms of the activities of daily living (a Barthel Index below 60) and 11 (18%) had difficulty in maintaining domestic activities and community living (an IADL score over 10). Although the remaining patients had made a good functional recovery, 23 were using technical aids and 28 needed family or caregiver assistance, including 23 patients with full functional independence scores. Twenty-five patients (42%) were suffering from depression as defined by the diagnosis and statistical manual of mental disorders (4th edition, text revision, DSM IV-R). The patients’ prime concerns were related to recovery of independence, leisure activities and financial resources. Family members’ expectations related to the complexity of administrative matters, lack of information and the delay in service delivery.Discussion and conclusionIn under-75 hemiplegic stroke patients, high scores on standard disability rating scales do not always mean that no help is required