Measuring SCD patient satisfaction with hospital care for pain
Research type
Research Study
Full title
A mixed methods study to adapt and pilot a brief questionnaire measure of sickle cell disease patients' satisfaction with hospital care during acute painful episodes
IRAS ID
145731
Contact name
Paul Telfer
Contact email
Sponsor organisation
Barts Health NHS Trust
Duration of Study in the UK
2 years, 0 months, 1 days
Research summary
The objective of the study is to adapt and pilot a brief questionnaire measure of sickle cell disease patients’ satisfaction with hospital care during acute painful episodes. The resulting questionnaire will be based very closely on existing questionnaire measures of patient perceptions of hospital pain management, with adaptations to ensure relevance and applicability to the management of acute painful episodes in sickle cell disease. The resulting questionnaire will then be used as one of the outcome measures in a study to evaluate a new hospital protocol for pain relief during painful episodes related to sickle cell disease. The questionnaire development and piloting will have two stages:
1 - Adaptation) Focus groups of people with sickle cell disease will be conducted to obtain their views about the relevance, importance, comprehensibility, acceptability and usability of approximately 40-60 candidate questionnaire items about patient experiences of hospital treatment for pain identified by a review of the literature and consultation with a panel of professional experts in the field. Based on the focus group outcomes, a briefer questionnaire with 15-20 items will be produced.
2 - Piloting) A questionnaire survey of approximately 120 people with sickle cell disease, using the 15-20 item version of the patient satisfaction questionnaire, along with other validated brief measures relevant to experiences of hospital pain management, to assess the internal consistency and convergent validity of scores produced by the questionnaire. Based on the findings, minor amendments, for example to delete inconsistent items, will be made before the questionnaire is used in the SCAPE trial and elsewhere.
REC name
Yorkshire & The Humber - Bradford Leeds Research Ethics Committee
REC reference
14/YH/1288
Date of REC Opinion
2 Dec 2014
REC opinion
Favourable Opinion