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Greater number of perceived barriers to hydroxyurea associated with poorer health-related quality of life in youth with sickle cell disease.

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.

SUBMITTER: Smaldone A

PROVIDER: S-EPMC6538386 | biostudies-literature | 2019 Jul

REPOSITORIES: biostudies-literature

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Greater number of perceived barriers to hydroxyurea associated with poorer health-related quality of life in youth with sickle cell disease.

Smaldone Arlene A Manwani Deepa D Green Nancy S NS

Pediatric blood & cancer 20190402 7

<h4>Background</h4>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.<h4>Procedure</h4>Barriers were measured using the Adolescent and Parent Medication Barriers Scales with ...[more]

PMID: 30941907

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Project description:PurposeObjectives of this longitudinal study were to examine 3-year trajectories of global perceived quality of life (QOL) for youth with chronic health conditions, as obtained from youth and parent reports, and to identify personal and environmental factors associated with the trajectory groups for each perspective.MethodsYouth with various chronic conditions aged 11-17 years and one of their parents were recruited from eight children's treatment centers. Latent class growth analysis was used to investigate perceived QOL trajectories (separately for youth and parent perspectives) over a 3-year period (four data collection time points spaced 12 months apart). Multinomial logistic regression was employed to identify factors associated with these trajectories.ResultsA total of 439 youth and one of their parents participated at baseline, and 302 (69 %) of those youth/parent dyads completed all four data collection time points. Two QOL trajectories were identified for the youth analysis: 'high and stable' (85.7 %) and 'moderate/low and stable' (14.3 %), while three trajectories were found for the parent analysis: 'high and stable' (35.7 %), 'moderate and stable' (46.6 %), and 'moderate/low and stable' (17.7 %). Relative to the 'high and stable' groups, youth with more reported pain/other physical symptoms, emotional symptoms, and home/community barriers were more likely to be in the 'moderate and stable' or 'moderate/low and stable' groups. Also, youth with higher reported self-determination, spirituality, family social support, family functioning, school productivity/engagement, and school belongingness/safety were less likely to be in the 'moderate and stable' or 'moderate/low and stable' groups, compared to the 'high and stable' groups.ConclusionFindings suggest that youth with chronic conditions experience stable global perceived QOL across time, but that some individuals maintain stability at moderate to moderate/low levels which is related to ongoing personal and environmental influences. Potential benefits of universal strategies and programs to safeguard resilience for all youth and targeted interventions to optimize certain youths' global perceived QOL are indicated.

Project description:BackgroundResidential youth care (RYC) institutions aim to provide care and stability for vulnerable adolescents with several previous and present challenges, such as disrupted attachments, wide-ranging adverse childhood experiences, mental health problems, and poor quality of life (QoL). To the best of our knowledge, the present study is the first to provide knowledge of the associations between perceived social support and QoL and to explore the potential moderating effect of perceived social support on QoL for adolescents who have experienced maltreatment and polyvictimization.MethodsAll RYC institutions with adolescents between the ages 12-23 in Norway were asked to participate in the study. A total of 86 institutions housing 601 adolescents accepted the invitation, from which 400 adolescents volunteered to participate. The Child and Adolescent Psychiatric Interview was used to gather information on maltreatment histories and degree of victimization; the Kinder Lebensqualität Fragebogen was used to measure QoL through several domains (overall QoL, physical well-being, emotional well-being, and self-esteem); and the Social Support Questionnaire was used to measure perceived social support. Linear regression and independent samples t-test were used to study the associations between perceived social support and QoL as well as the potential moderating effect of perceived social support in the association between maltreatment history and QoL.ResultsPerceived social support was positively associated with QoL for both girls and boys, with domain-specific findings. A higher number of different types of support persons was associated with overall QoL, emotional well-being, and self-esteem for boys, but only with self-esteem for girls. Individual social support from RYC staff and friends was associated with higher QoL for girls. However, perceived social support did not moderate the association between maltreatment history and reduced QoL for either sex.ConclusionsThis study emphasizes the importance of maintaining social support networks for adolescents living in RYC, the crucial contribution of RYC staff in facilitating social support, and the potential value of social skills training for these vulnerable adolescents. Furthermore, a wider range of initiatives beyond social support must be carried out to increase QoL among adolescents with major maltreatment and polyvictimization experiences.

Dataset Information

Greater number of perceived barriers to hydroxyurea associated with poorer health-related quality of life in youth with sickle cell disease.

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Greater number of perceived barriers to hydroxyurea associated with poorer health-related quality of life in youth with sickle cell disease.

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