What do patients and their carers want to know about stroke? A two-year follow-up study

Objective: To clarify what issues are important to stroke patients and their carers. To determine whether these issues change over time.

Design: Prospective study of consecutive patients admitted to hospital with a diagnosis of an acute stroke. Each participant had interviews at six and 24 months. In addition, a subgroup of these patients (consecutive discharges over a two-month period) were also seen at two weeks post discharge.

Setting and subjects: Hospital-based cohort of stroke survivors. Interviewed in their own homes.

Main outcome measures: Documentation of the questions asked.

Results: At two weeks, six and 24 months, a median of three, two and three questions were asked by each patient respectively. Enquiries about basic aspects of stroke were common but diminished over time. Fear of recurrence was apparent at all three interview periods. Enquiries about the psychological sequelae of stroke became more prevalent at six and 24 months. At two years, 32% of respondents asked about concentration/memory difficulties with smaller numbers commenting on tiredness, depression and frustration. At two years, 18% of the sample were still uncertain of their chances of further recovery.

Conclusions: Patients with stroke continue to have unanswered questions even two years after their stroke. The types of questions asked changed over time.