A brief measure of patient satisfaction with treatment for pain is needed to help improve the treatment of painful episodes caused by sickle cell disease (SCD), especially during and after the transition from paediatric to adult care. Focus groups of 28 adolescent and adult patients were consulted about the content, clarity and relevance of 30 potential items, resulting in an 18-item version. This was validated by analysing questionnaire responses from 120 patients aged 12-53 years. Confirmatory factor analysis and item analysis indicated five subscales with high internal reliability: 'Communication and Involvement' (6 items, α = 0·87); 'Respect and Dignity' (3 items, α = 0·82); 'Pain Control' (3 items, α = 0·91); 'Staff Attitudes and Behaviour' (4 items, α = 0·88); and 'Overall Satisfaction' (2 items, α = 0·85) plus a Total Satisfaction score (18 items, α = 0·96). High negative correlations with the Picker Patient Experience Questionnaire, a measure of problem experiences, indicated good convergent validity. Lower satisfaction scores among patients aged over 18 years, those admitted via the emergency department, those treated by non-specialist hospital staff, and those reporting more breakthrough pain indicated good concurrent validity. The questionnaire provides a convenient brief measure that can be used to inform and evaluate improvements in healthcare for adolescent and adult patients with SCD, and could potentially be adapted for other painful conditions.
Keywords: pain; patient; satisfaction; sickle; treatment.
© 2019 British Society for Haematology and John Wiley & Sons Ltd.