Satisfaction and access to care for adults and adolescents with sickle cell disease: ASCQ-Me quality of care and the SHIP-HU study.
Satisfaction and access to care for adults and adolescents with sickle cell disease: ASCQ-Me quality of care and the SHIP-HU study.
复制标题
患有镰状细胞病的成人和青少年的满意度和获得护理的机会：ASCQ-Me 护理质量和 SHIP-HU 研究。
DOI：
10.1002/pbc.29948
复制
发表时间：
2022
影响因子：
3.2
通讯作者：
Smith,WallyR
中科院分区：
文献类型：
--
作者：
Sisler,India;McClish,DonnaK;Valrie,Cecelia;Villella,Anthony;Smith,WallyR
A lack of adult sickle cell providers has long been blamed for poor satisfaction and access to specialty care for adults with sickle cell disease (SCD). We were interested in comparing how adolescent and adult patients already in established SCD centers perceived access and quality of care. Hydroxyurea‐eligible patients aged 15 years and older were enrolled in the Start Healing in Patients with Hydroxyurea trial, which required them to be affiliated with a SCD specialist. Patients were seen in one of three adult‐oriented specialty clinic sites or one of three pediatric‐oriented sites. At baseline, patients completed the Adult Sickle Cell Quality of Life Measurement Information System measure as part of a survey battery. Patients treated at adult clinic sites reported being less able to get timely ambulatory appointments (p= .004). They reported emergency department (ED) wait times of >1 h far more often (47.7 vs. 19.3%,p= .0048). They reported less overall satisfaction with care (7.47 vs. 8.77,p< .0001), and less satisfaction with care in the ED (2.88 vs. 3.4,p= .0068. Ambulatory satisfaction was no different between pediatric site versus adult site patients. Poorer systems of care appeared to underlie reported differences, rather than differences in biopsychosocial determinants. Even among specialty‐care‐affiliated SCD patients, those seen in adult clinics reported worse access to care and lower satisfaction with care than patients seen in pediatric clinics. In addition to increasing the number of adult SCD providers and better preparing pediatric SCD patients to transfer to adult programs, SCD clinical caregivers must also improve aspects of adult care quality to meet reasonable patient expectations of timeliness and interpersonal aspects of care quality.
