Literature DB >> 22099357

Self-reported barriers to hemophilia care in people with factor VIII deficiency.

Zheng-Yi Zhou1, Brenda Riske, Ann D Forsberg, Megan Ullman, Judith R Baker, Marion A Koerper, Randall G Curtis, Mimi Lou, Wu Joanne, Kathleen A Johnson.   

Abstract

BACKGROUND: In 1975, a national network of hemophilia treatment centers (HTCs) was created to increase access to healthcare services for individuals with hemophilia. Studies demonstrate that care in HTCs improves outcomes and reduces costs.
PURPOSE: The objective of the study was to assess the association of demographic, insurance, and clinical characteristics with self-reported barriers to HTC utilization.
METHODS: Data were collected from six HTCs from 2005 through 2007. Adult participants and parents of children aged <18 years were interviewed. Barriers were assessed by asking whether it was difficult to obtain care in the past 12 months. Chi-square test and logistic regression were used to assess factors associated with self-reported barriers to care. All analyses were performed in 2010-2011.
RESULTS: Data for 327 participants (50% adult, 64% severe hemophilia) were analyzed in 2010-2011. Most participants/parents did not report barriers to HTC utilization. However, 46 participants/parents (14%) reported one to six barriers, and 23 reported one barrier. Most frequently reported barriers were "distance to the clinic" for children (44%) and "insurance coverage" for adults (40%). Factors significantly associated with self-reported barriers were: lower income (<$20,000; OR=3.11, 95% CI=1.14-8.45), difficulty finding insurance or obtaining full-year coverage (OR=5.71, 95% CI=2.63-12.41), and decreased state Medicaid coverage for low-income, non-elderly individuals (OR=0.93, 95% CI=0.89-0.98).
CONCLUSIONS: This study indicates that, although few people with hemophilia have barriers to care at HTCs, those with lower income, difficulty finding or maintaining adequate insurance coverage, or living in states with lower Medicaid generosity are more likely to report barriers. Identifying and resolving such barriers may improve care access and patient-reported outcomes.
Copyright © 2011 American Journal of Preventive Medicine. Published by Elsevier Inc. All rights reserved.

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Mesh:

Year:  2011        PMID: 22099357     DOI: 10.1016/j.amepre.2011.09.003

Source DB:  PubMed          Journal:  Am J Prev Med        ISSN: 0749-3797            Impact factor:   5.043


  5 in total

1.  Treatment Adherence and Health-Related Quality of Life in Patients with Hemophilia in Hong Kong.

Authors:  Yin Ting Cheung; Pok Hong Lam; Henry Hon Wai Lam; Chung-Tin Ma; Alex Wing Kwan Leung; Raymond Siu Ming Wong; Chi Kong Li
Journal:  Int J Environ Res Public Health       Date:  2022-05-26       Impact factor: 4.614

2.  Impact of the 340B Pharmacy Program on Services and Supports for Persons Served by Hemophilia Treatment Centers in the United States.

Authors:  Rebecca A Malouin; Laurel Mckernan; Ann Forsberg; Dunlei Cheng; John Drake; Kathryn McLaughlin; Marisela Trujillo
Journal:  Matern Child Health J       Date:  2018-09

Review 3.  Telehealth Interventions for Improving Self-Management in Patients With Hemophilia: Scoping Review of Clinical Studies.

Authors:  Wenji Qian; Teddy Tai-Ning Lam; Henry Hon Wai Lam; Chi-Kong Li; Yin Ting Cheung
Journal:  J Med Internet Res       Date:  2019-07-10       Impact factor: 5.428

4.  From the voices of people with haemophilia A and their caregivers: Challenges with current treatment, their impact on quality of life and desired improvements in future therapies.

Authors:  Ryan E Wiley; Charles P Khoury; Adrian W K Snihur; Marni Williams; David Page; Nicole Graham; Lori Laudenbach; Cindy Milne-Wren; Jayson M Stoffman
Journal:  Haemophilia       Date:  2019-04-23       Impact factor: 4.287

5.  Barriers and perceived limitations to early treatment of hemophilia.

Authors:  Kapil Saxena
Journal:  J Blood Med       Date:  2013-05-16
  5 in total

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