Is treatment adherence associated with better quality of life in children with sickle cell disease?

Barakat, Lamia P.; Lutz, Meredith J.; Smith‐Whitley, Kim; Ohene‐Frempong, Kwaku

doi:10.1007/s11136-004-5328-0

Cited by 31 publications

(22 citation statements)

References 18 publications

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“…Furthermore, quality of life may differ for patients with the same ''objective'' health status and health status is not consistently associated with perceived interference with functioning, making this an essential end point to consider. 41,42 A combination of methodologies, both self-report, other report, and medical file review, would present the most complete assessment of adolescent health at any given point in time.…”

Section: Discussionmentioning

confidence: 99%

A Prospective Study of the Role of Coping and Family Functioning in Health Outcomes for Adolescents With Sickle Cell Disease

Barakat

Patterson

Weinberger

et al. 2007

Journal of Pediatric Hematology/Oncology

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Risk-and-resistance models identify factors that predict psychosocial adjustment to pediatric chronic illness, including sickle cell disease (SCD), but have not been applied to understand health outcomes. The study objectives were to examine prospectively the relationship of coping and family functioning with health outcomes for adolescents with SCD, accounting for sociodemographic and psychosocial risk. Forty-one adolescents and their families (41 primary caregivers, 9 second caregivers, and 15 healthy siblings) completed paper-and-pencil measures of coping and family functioning at a baseline assessment (time 1). At both time 1 and time 2 (1 y later), disease severity, SCD complications, healthcare utilization, and average hemoglobin level were derived from medical file reviews. Time 1 disease-related parenting stress predicted time 2 health outcomes; however, there were no significant associations for coping. Families concordant in reporting lower family functioning had teens with increased disease severity and greater healthcare utilization. Examination of moderation of disease-related parenting stress by a risk index showed main effects for risk and for disease-related parenting stress for time 2 disease severity and time 2 healthcare utilization. Interaction effects were not significant. Efforts to explore specific mechanisms by which adaptive family functioning contributes to health outcomes for adolescents with SCD should continue, with particular attention to addressing the potential role of multiple sociodemographic and psychosocial risk variables.

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Section: Discussionmentioning

confidence: 99%

A Prospective Study of the Role of Coping and Family Functioning in Health Outcomes for Adolescents With Sickle Cell Disease

Barakat

Patterson

Weinberger

et al. 2007

Journal of Pediatric Hematology/Oncology

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“…Studies have indicated that daily oral HU use is associated with reduced pain crises, hospitalizations, acute chest syndrome, and transfusions and improved growth and health-related quality of life [5–9]. Thus, the consequences of nonadherence to clinic attendance and HU treatments result in increased morbidity [10], healthcare costs [11], and decreased quality of life [12]. …”

Section: Introductionmentioning

confidence: 99%

Integrating Interactive Web-Based Technology to Assess Adherence and Clinical Outcomes in Pediatric Sickle Cell Disease

Crosby

Barach

McGrady

et al. 2012

Anemia

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Research indicates that the quality of the adherence assessment is one of the best predictors for improving clinical outcomes. Newer technologies represent an opportunity for developing high quality standardized assessments to assess clinical outcomes such as patient experience of care but have not been tested systematically in pediatric sickle cell disease (SCD). The goal of the current study was to pilot an interactive web-based tool, the Take-Charge Program, to assess adherence to clinic visits and hydroxyurea (HU), barriers to adherence, solutions to overcome these barriers, and clinical outcomes in 43 patients with SCD age 6–21 years. Results indicate that the web-based tool was successfully integrated into the clinical setting while maintaining high patient satisfaction (>90%). The tool provided data consistent with the medical record, staff report, and/or clinical lab data. Participants reported that forgetting and transportation were major barriers for adherence to both clinic attendance and HU. A greater number of self-reported barriers (P < .01) and older age (P < .05) were associated with poorer clinic attendance and HU adherence. In summary, the tool represents an innovative approach to integrate newer technology to assess adherence and clinical outcomes for pediatric patients with SCD.

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“…There is very little information on the HRQL of children with SCD either during or following a vaso-occlusive painful event. One prior study measured HRQL upon admission for a painful event; however, the purpose of their study was to measure the association between adherence and HRQL [13]. In addition, there is no research evaluating the ability of HRQL measures to detect change over time in children with SCD.…”

Section: Introductionmentioning

confidence: 99%

Vaso‐occlusive painful events in sickle cell disease: Impact on child well‐being

Brandow

Brousseau

Pajewski

et al. 2009

Pediatric Blood & Cancer

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Background This study describes how painful events affect the health related quality of life (HRQL) of children with sickle cell disease (SCD) and determines the responsiveness of a generic HRQL measure in SCD. Our hypotheses were twofold: 1) HRQL is significantly impaired at presentation to the emergency department for a painful event and 2) PedsQL 4.0 Acute Version Generic Core Scales is responsive to change in the evolution of a painful event. Procedure This prospective cohort study included 57 children with SCD. HRQL was measured with the Acute Version of the PedsQL 4.0 Generic Core Scales, completed by child (self-report) and caregiver (proxy-report) at presentation and seven days post-discharge. Independent comparisons of HRQL scores were made between children in the study cohort and a published reference sample of children with SCD in baseline health (historical SCD controls). Results Median PedsQL scores at presentation were significantly lower than historical SCD controls in all domains for child self-report and all domains except social and school functioning in parent-proxy. Clinically and statistically significant changes in HRQL between presentation and post-discharge resulted in similar HRQL scores at seven days post-discharge to historical SCD controls. Conclusions The PedsQL is responsive to change; thus a useful tool to measure the impact of interventions in future SCD clinical trials. Painful events significantly diminish all domains of HRQL and this improves seven days post-discharge.

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Is treatment adherence associated with better quality of life in children with sickle cell disease?

Cited by 31 publications

References 18 publications

A Prospective Study of the Role of Coping and Family Functioning in Health Outcomes for Adolescents With Sickle Cell Disease

A Prospective Study of the Role of Coping and Family Functioning in Health Outcomes for Adolescents With Sickle Cell Disease

Integrating Interactive Web-Based Technology to Assess Adherence and Clinical Outcomes in Pediatric Sickle Cell Disease

Vaso‐occlusive painful events in sickle cell disease: Impact on child well‐being

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