Chakravorty, SSChakravortyTallett, amyamyTallettSathyamoorthy, GaneshGaneshSathyamoorthyWitwicki, CaraCaraWitwickiHay, HarrietHarrietHayOgundipe, AvanelleAvanelleOgundipeMkandawire, CatherineCatherineMkandawireOjeer, PatrickPatrickOjeerWhitaker, AntoniaAntoniaWhitakerThompson, JessicaJessicaThompsonWarner, JOJOWarner2018-06-052018-12-01Archives of Disease in Childhood, 103 (12), pp.1104-11091468-2044http://hdl.handle.net/10044/1/59853Objectives: 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.© 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/.Science & TechnologyLife Sciences & BiomedicinePediatricsCARECHILDRENTRANSITIONVALIDATIONOUTCOMESENGLANDYOUNGpatient experiencepatient reported experience measuresickle cell diseaseAdolescentAdultAgedAged, 80 and overAnemia, Sickle CellChildChild, PreschoolClinical CompetenceFemaleFocus GroupsHealth Care SurveysHealth Knowledge, Attitudes, PracticeHumansInfantInfant, NewbornMaleMiddle AgedPatient Reported Outcome MeasuresPilot ProjectsQualitative ResearchReproducibility of ResultsUnited KingdomYoung AdultPediatrics1103 Clinical Sciences1114 Paediatrics and Reproductive Medicine1117 Public Health and Health ServicesJournal Articlehttps://www.dx.doi.org/10.1136/archdischild-2018-314955https://adc.bmj.com/content/103/12/1104