Arlene Smaldone1,2, Deepa Manwani3, Nancy S Green4. 1. Columbia University School of Nursing, New York, New York. 2. College of Dental Medicine, Columbia University Medical Center, New York, New York. 3. Department of Pediatrics, Albert Einstein College of Medicine, New York, New York. 4. Department of Pediatrics, Columbia University Medical Center, New York, New York.
Abstract
BACKGROUND: Despite medical benefits, hydroxyurea adherence in adolescents is often poor. As part of a baseline assessment of 28 youth (10-18 years) parent dyads who participated in a 6-month feasibility trial to improve hydroxyurea adherence, we measured the relationship between greater barriers to adherence and health-related quality of life (HRQL) from youth and parent perspectives. PROCEDURE: Barriers were measured using the Adolescent and Parent Medication Barriers Scales with nine hydroxyurea items added. Barriers reported by ≥25% of the sample were considered common. Generic and disease-specific HRQL were measured by PedsQL and PedsQL Sickle Cell Disease modules. Data were analyzed using descriptive statistics, Cronbach alpha, Spearman correlation coefficients, and paired t tests. RESULTS: Fifty-six subjects (28 dyads) participated. Youth reported greater barriers compared with parents (5.0 ± 3.9 and 3.5 ± 3.2; P = 0.03), with >80% of respondents reporting ≥1 barriers. Twelve barriers were reported by ≥25% of adolescents, whereas six were reported by ≥25% of parents. Of these, only two were common to both dyad members. Approximately one-third of youth had generic and disease-specific HRQL scores that fell at or below cutoff scores, suggesting being at risk for impaired HRQL. Greater barriers were inversely associated with poorer generic (parent r = -0.43, P = 0.03; youth r = -0.44, P < 0.001) and disease-specific HRQL (parent r = -0.53, P = 0.005; youth r = -0.53, P < 0.001). CONCLUSIONS: Hydroxyurea barriers were frequently reported but differed by dyad members' perspective. Greater barriers were associated with poorer generic and disease-specific HRQL. To reduce barriers to hydroxyurea in youth with sickle cell disease, perspectives of both dyad members should be addressed.
BACKGROUND: Despite medical benefits, hydroxyurea adherence in adolescents is often poor. As part of a baseline assessment of 28 youth (10-18 years) parent dyads who participated in a 6-month feasibility trial to improve hydroxyurea adherence, we measured the relationship between greater barriers to adherence and health-related quality of life (HRQL) from youth and parent perspectives. PROCEDURE: Barriers were measured using the Adolescent and Parent Medication Barriers Scales with nine hydroxyurea items added. Barriers reported by ≥25% of the sample were considered common. Generic and disease-specific HRQL were measured by PedsQL and PedsQL Sickle Cell Disease modules. Data were analyzed using descriptive statistics, Cronbach alpha, Spearman correlation coefficients, and paired t tests. RESULTS: Fifty-six subjects (28 dyads) participated. Youth reported greater barriers compared with parents (5.0 ± 3.9 and 3.5 ± 3.2; P = 0.03), with >80% of respondents reporting ≥1 barriers. Twelve barriers were reported by ≥25% of adolescents, whereas six were reported by ≥25% of parents. Of these, only two were common to both dyad members. Approximately one-third of youth had generic and disease-specific HRQL scores that fell at or below cutoff scores, suggesting being at risk for impaired HRQL. Greater barriers were inversely associated with poorer generic (parent r = -0.43, P = 0.03; youth r = -0.44, P < 0.001) and disease-specific HRQL (parent r = -0.53, P = 0.005; youth r = -0.53, P < 0.001). CONCLUSIONS:Hydroxyurea barriers were frequently reported but differed by dyad members' perspective. Greater barriers were associated with poorer generic and disease-specific HRQL. To reduce barriers to hydroxyurea in youth with sickle cell disease, perspectives of both dyad members should be addressed.
Authors: James W Varni; Robert J Shulman; Mariella M Self; Shehzad A Saeed; George M Zacur; Ashish S Patel; Samuel Nurko; Deborah A Neigut; James P Franciosi; Miguel Saps; Jolanda M Denham; Chelsea Vaughan Dark; Cristiane B Bendo; John F Pohl Journal: Qual Life Res Date: 2017-09-08 Impact factor: 4.147
Authors: Barbara P Yawn; George R Buchanan; Araba N Afenyi-Annan; Samir K Ballas; Kathryn L Hassell; Andra H James; Lanetta Jordan; Sophie M Lanzkron; Richard Lottenberg; William J Savage; Paula J Tanabe; Russell E Ware; M Hassan Murad; Jonathan C Goldsmith; Eduardo Ortiz; Robinson Fulwood; Ann Horton; Joylene John-Sowah Journal: JAMA Date: 2014-09-10 Impact factor: 56.272
Authors: Julie A Panepinto; J Paul Scott; Oluwakemi Badaki-Makun; Deepika S Darbari; Corrie E Chumpitazi; Gladstone E Airewele; Angela M Ellison; Kim Smith-Whitley; Prashant Mahajan; Sharada A Sarnaik; T Charles Casper; Larry J Cook; Julie Leonard; Monica L Hulbert; Elizabeth C Powell; Robert I Liem; Robert Hickey; Lakshmanan Krishnamurti; Cheryl A Hillery; David C Brousseau Journal: Health Qual Life Outcomes Date: 2017-06-12 Impact factor: 3.186
Authors: Moran Gotesman; Guy Elgar; Laura Hernandez Santiago; Abigail Alvarez; Youngju Pak; Henry J Lin; Joseph L Lasky; Eduard H Panosyan Journal: In Vivo Date: 2022 Jul-Aug Impact factor: 2.406
Authors: Susan E Creary; Chase Beeman; Joseph Stanek; Kathryn King; Patrick T McGann; Sarah H O'Brien; Robert I Liem; Jane Holl; Sherif M Badawy Journal: Pediatr Blood Cancer Date: 2022-04-04 Impact factor: 3.838