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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.
Rizio, Avery A; Bhor, Menaka; Lin, Xiaochen; McCausland, Kristen L; White, Michelle K; Paulose, Jincy; Nandal, Savita; Halloway, Rashid I; Bronté-Hall, Lanetta.
Afiliação
  • Rizio AA; Patient Insights, Optum, 1301 Atwood Ave, Suite 311N, Johnston, RI, USA. arizio@qualitymetric.com.
  • Bhor M; Novartis Pharmaceutical Corporation, One Health Plaza, East Hanover, NJ, USA.
  • Lin X; Patient Insights, Optum, 1301 Atwood Ave, Suite 311N, Johnston, RI, USA.
  • McCausland KL; Patient Insights, Optum, 1301 Atwood Ave, Suite 311N, Johnston, RI, USA.
  • White MK; Patient Insights, Optum, 1301 Atwood Ave, Suite 311N, Johnston, RI, USA.
  • Paulose J; Novartis Pharmaceutical Corporation, One Health Plaza, East Hanover, NJ, USA.
  • Nandal S; Novartis Pharmaceutical Corporation, One Health Plaza, East Hanover, NJ, USA.
  • Halloway RI; Formerly Novartis Pharmaceutical Corporation, One Health Plaza, East Hanover, NJ, USA.
  • Bronté-Hall L; Foundation for Sickle Cell Disease Research, 3858 Sheridan St, Suite S, Hollywood, FL, USA.
Qual Life Res ; 29(6): 1533-1547, 2020 Jun.
Article em En | MEDLINE | ID: mdl-31933113
ABSTRACT

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 (WPAISHP). Differences in ASCQ-Me and WPAISHP 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 < 0.05). Significant impacts on HRQoL and work productivity were also observed when stratifying by VOC severity (P < 0.05 for all ASCQ-Me and WPAI domains, except for presenteeism).

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.
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Texto completo: 1 Coleções: 01-internacional Contexto em Saúde: 1_ASSA2030 Base de dados: MEDLINE Assunto principal: Dor / Qualidade de Vida / Desempenho Profissional / Anemia Falciforme Tipo de estudo: Qualitative_research Aspecto: Patient_preference Limite: Adult / Female / Humans / Male Idioma: En Revista: Qual Life Res Ano de publicação: 2020 Tipo de documento: Article

Texto completo: 1 Coleções: 01-internacional Contexto em Saúde: 1_ASSA2030 Base de dados: MEDLINE Assunto principal: Dor / Qualidade de Vida / Desempenho Profissional / Anemia Falciforme Tipo de estudo: Qualitative_research Aspecto: Patient_preference Limite: Adult / Female / Humans / Male Idioma: En Revista: Qual Life Res Ano de publicação: 2020 Tipo de documento: Article