Patient-reported experience measure in sickle cell disease
| العنوان: | Patient-reported experience measure in sickle cell disease |
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| المؤلفون: | John O. Warner, Harriet Hay, Antonia Whitaker, Subarna Chakravorty, Jessica A. Thompson, Stephen Sizmur, Patrick Ojeer, Avanelle Ogundipe, A Tallett, Ganesh Sathyamoorthy, Cara Witwicki, Catherine Mkandawire |
| المصدر: | Archives of Disease in Childhood |
| بيانات النشر: | BMJ, 2018. |
| سنة النشر: | 2018 |
| مصطلحات موضوعية: | Male, Health Knowledge, Attitudes, Practice, Service delivery framework, ENGLAND, CHILDREN, Pilot Projects, Pediatrics, 0302 clinical medicine, Health care, Medicine, 030212 general & internal medicine, Young adult, Child, Qualitative Research, Aged, 80 and over, OUTCOMES, Focus Groups, Middle Aged, Cognitive test, Child, Preschool, Female, Clinical Competence, Life Sciences & Biomedicine, TRANSITION, Adult, medicine.medical_specialty, Adolescent, patient reported experience measure, Anemia, Sickle Cell, VALIDATION, Global Child Health, 1117 Public Health and Health Services, Young Adult, 03 medical and health sciences, 030225 pediatrics, Patient experience, Humans, Patient Reported Outcome Measures, Aged, Science & Technology, patient experience, business.industry, Infant, Newborn, Infant, Reproducibility of Results, Construct validity, 1103 Clinical Sciences, CARE, Focus group, United Kingdom, Health Care Surveys, Family medicine, YOUNG, Pediatrics, Perinatology and Child Health, 1114 Paediatrics and Reproductive Medicine, sickle cell disease, business, Qualitative research |
| الوصف: | ObjectivesTo 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.DesignPicker 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.SettingPatients 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.ParticipantsThirty-three patients and carers took part in the focus groups, 21 participants undertook cognitive testing and 722 respondents completed the pilot survey.ResultsFindings 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.ConclusionsThe 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. |
| تدمد: | 1468-2044 0003-9888 |
| الوصول الحر: | https://explore.openaire.eu/search/publication?articleId=doi_dedup___::b99fa30e6f324718491821462a8fd606Test https://doi.org/10.1136/archdischild-2018-314955Test |
| حقوق: | OPEN |
| رقم الانضمام: | edsair.doi.dedup.....b99fa30e6f324718491821462a8fd606 |
| قاعدة البيانات: | OpenAIRE |
| تدمد: | 14682044 00039888 |
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