RT Journal Article
SR Electronic
T1 Patient-reported experience measure in sickle cell disease
JF Archives of Disease in Childhood
JO Arch Dis Child
FD BMJ Publishing Group Ltd and Royal College of Paediatrics and Child Health
SP 1104
OP 1109
DO 10.1136/archdischild-2018-314955
VO 103
IS 12
A1 Subarna Chakravorty
A1 Amy Tallett
A1 Cara Witwicki
A1 Harriet Hay
A1 Catherine Mkandawire
A1 Avanelle Ogundipe
A1 Patrick Ojeer
A1 Antonia Whitaker
A1 Jessica Thompson
A1 Stephen Sizmur
A1 Ganesh Sathyamoorthy
A1 John O Warner
YR 2018
UL http://adc.bmj.com/content/103/12/1104.abstract
AB Objectives To develop patient-reported experience measure surveys for patients with sickle cell disease (SCD) to understand their healthcare and lived experience in the UK and for their use in future to inform healthcare service development.Design Picker methodology was used as follows: (1) qualitative scoping by focus group discussions; (2) questionnaire development through stakeholder consultations; (3) construct validation of questionnaires through cognitive testing; and (4) further assessment of construct validity by a nationwide pilot survey.Setting Patients with SCD and their carers were eligible. Focus group discussions took place in non-hospital settings, arranged out of hours. Cognitive testing took place in specialist sickle cell clinics. The pilot survey was available to UK participants only and was administered through web-based questionnaires, face-to face completion and in sickle cell community events.Participants Thirty-three patients and carers took part in the focus groups, 21 participants undertook cognitive testing and 722 respondents completed the pilot survey.Results Findings highlighted a widespread prevalence of poor knowledge about SCD among healthcare providers and the public. Poorer experience of care was present in the emergency setting compared with planned care, of which lack of timely provision of pain relief was of concern. Adolescents and young people reported significantly poorer experience of care in several domains compared with children or adults.Conclusions The new surveys functioned well, with good evidence of validity, and were accessible to the SCD patient population, supporting their future use in assessing patient experience to inform service delivery and improvements in care quality.