Patient reported experience measure in Sickle Cell disease
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Published version
Author(s)
Type
Journal Article
Abstract
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 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 to 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 to 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.
Date Issued
2018-12-01
Date Acceptance
2018-04-28
ISSN
1468-2044
Publisher
BMJ Publishing Group
Start Page
1104
End Page
1109
Journal / Book Title
Archives of Disease in Childhood
Volume
103
Issue
12
Copyright Statement
© Author(s) (or their employer(s)) 2018. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
Source Database
manual-entry
Identifier
https://adc.bmj.com/content/103/12/1104
Subjects
Science & Technology
Life Sciences & Biomedicine
Pediatrics
CARE
CHILDREN
TRANSITION
VALIDATION
OUTCOMES
ENGLAND
YOUNG
patient experience
patient reported experience measure
sickle cell disease
Adolescent
Adult
Aged
Aged, 80 and over
Anemia, Sickle Cell
Child
Child, Preschool
Clinical Competence
Female
Focus Groups
Health Care Surveys
Health Knowledge, Attitudes, Practice
Humans
Infant
Infant, Newborn
Male
Middle Aged
Patient Reported Outcome Measures
Pilot Projects
Qualitative Research
Reproducibility of Results
United Kingdom
Young Adult
Pediatrics
1103 Clinical Sciences
1114 Paediatrics and Reproductive Medicine
1117 Public Health and Health Services
Publication Status
Published
Date Publish Online
2018-11-20