Or register here
Global Search

Trusted Resources: Evidence & Education

Scientific literature and patient education texts

Back to Evidence & Education / Scientific Articles

Patient-reported experience measure in sickle cell disease

key information

source: Archives of disease in childhood

year: 2018

authors: Chakravorty S, Tallett A, Witwicki C, Hay H, Mkandawire C, Ogundipe A, Ojeer P, Whitaker A, Thompson J, Sizmur S, Sathyamoorthy G, Warner JO

summary/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; 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.

organization: King's College Hospital NHS Foundation Trust, UK; Imperial College London, UK; Picker, UK; Imperial College Healthcare NHS Trust, UK; Sickle Cell Society, UK; National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care (NIHR CLAHRC), UK

DOI: 10.1136/archdischild-2018-314955

read more full text

Related Content

To improve your experience on this site, we use cookies. This includes cookies essential for the basic functioning of our website, cookies for analytics purposes, and cookies enabling us to personalize site content. By clicking on 'Accept' or any content on this site, you agree that cookies can be placed. You may adjust your browser's cookie settings to suit your preferences. More Information

The cookie settings on this website are set to "allow cookies" to give you the best browsing experience possible. If you continue to use this website without changing your cookie settings or you click "Accept" below then you are consenting to this.

Close

© 2026 rareLife solutions Inc.

To improve your experience on this site, we use cookies. This includes cookies essential for the basic functioning of our website, cookies for analytics purposes, and cookies enabling us to personalize site content. By clicking on 'Accept' or any content on this site, you agree that cookies can be placed. You may adjust your browser's cookie settings to suit your preferences. More Information

The cookie settings on this website are set to "allow cookies" to give you the best browsing experience possible. If you continue to use this website without changing your cookie settings or you click "Accept" below then you are consenting to this.

Close