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Sickle cell patients in UK survey, especially those 16 to 20, voice problems with care and pain relief given
In a survey, patients across the U.K. with sickle cell disease — especially adolescents and young adults — voiced discontent with their healthcare experiences, particularly as they relate to emergency care and the promptness of pain relief, a study reports.
The study, “Patient-reported experience measure in sickle cell disease,” was published in the journal Archives of Disease in Childhood.
Sickle cell is among the more common, serious genetic conditions diagnosed in newborns in the U.K., predominantly affecting people of African descent, the researchers note, citing a National Health Service (NHS) report.
Despite its prevalence, understanding and awareness of the condition — which influences patient care — can be poor. Disease symptoms like vaso-occlusive pain crises that strike patients are often treated with opioid-based painkillers that require a prescription, and younger patients requesting such treatment can be regarded with suspicion.
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This platform is made possible through a partnership with the Sickle Cell Disease Association of America, Inc. (SCDAA) and its member organizations. SCDAA's mission is to advocate for people affected by sickle cell conditions and empower community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure.