Consulting the "experts": a pilot study on perceptions of professional support among lung transplant recipients and accompanying relatives.

Background: Lung transplantation is extremely stressful for patients and accompanying support persons.

Purpose: To improve delivery of care, we designed a cross-sectional study about unmet needs and perceived helpfulness of staff.

Methods: The sample consisted of 30 adult lung transplant recipients with cystic fibrosis (and 22 relatives) and 20 age-matched recipients with other reasons for transplantation (and 17 relatives). Mean survival since transplantation was 5 years. Data were collected via questionnaires (numerical rating scales and fill-in-the-blank items).

Results: Most patients in both groups were satisfied with staff support (nurse, doctor) especially during the acute stage of illness. Relatives were less satisfied at all stages. Patients' satisfaction with doctors' support was higher after than before transplantation, but the opposite was true for relatives. Insufficient continuity of care was the most frequent critical comment from patients and support persons. Recommendations to improve delivery of care included providing access to psychosocial professionals and broadening the information provided before transplantation.

Conclusions: Regular screening of customer satisfaction should become routine. Particular attention should be paid to support persons.