The relationship between frequency and severity of vaso-occlusive crises and health-related quality of life and work productivity in adults with sickle cell disease

Autor:	Savita Nandal, Xiaochen Lin, Jincy Paulose, Kristen L. McCausland, Rashid Halloway, Michelle K. White, Avery A. Rizio, Lanetta Bronté-Hall, Menaka Bhor
Rok vydání:	2020
Předmět:	Adult Male Work productivity medicine.medical_specialty Health-related quality of life Pain Anemia Sickle Cell Disease Article 03 medical and health sciences 0302 clinical medicine Quality of life Surveys and Questionnaires medicine Humans Productivity Work Performance Health related quality of life Vaso-occlusive crises business.industry Sickle cell disease Public health Public Health Environmental and Occupational Health 030220 oncology & carcinogenesis Emergency medicine Presenteeism Quality of Life Absenteeism Female business 030215 immunology
Zdroj:	Quality of Life Research
ISSN:	1573-2649 0962-9343
DOI:	10.1007/s11136-019-02412-5
Popis:	Purpose Patients with sickle cell disease (SCD) may experience sickle cell-related pain crises, also referred to as vaso-occlusive crises (VOCs), which are a substantial cause of morbidity and mortality. The study explored how VOC frequency and severity impacts health-related quality of life (HRQoL) and work productivity. Methods Three hundred and three adults with SCD who completed an online survey were included in the analysis. Patients answered questions regarding their experience with SCD and VOCs, and completed the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) and the Workplace Productivity and Activity Impairment: Specific Health Problem (WPAI:SHP). Differences in ASCQ-Me and WPAI:SHP domains were assessed according to VOC frequency and severity. Results Nearly half of the patient sample (47.2%) experienced ≥ 4 VOCs in the past 12 months. The most commonly reported barriers to receiving care for SCD included discrimination by or trouble trusting healthcare professionals (39.6%, 33.3%, respectively), limited access to treatment centers (38.9%), and difficulty affording services (29.4%). Patients with more frequent VOCs reported greater impacts on emotion, social functioning, stiffness, sleep and pain, and greater absenteeism, overall productivity loss, and activity impairment than patients with less frequent VOCs (P P Conclusions Results from the survey indicated that patients with SCD who had more frequent or severe VOCs experienced deficits in multiple domains of HRQoL and work productivity. Future research should examine the longitudinal relationship between these outcomes.
Databáze:	OpenAIRE
Externí odkaz:	https://explore.openaire.eu/search/publication?articleId=doi_dedup___::d20989d8f548eabefb84c5b476121196 https://doi.org/10.1007/s11136-019-02412-5 Zobrazit plný text záznamu Plný text ve formátu PDF Plný text ve formátu HTML
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