Sickle Cell Disease Clinical Trial
Official title:
Evaluation of Nocturnal Enuresis and Barriers to Treatment Among Pediatric Patients With Sickle Cell Disease
Pediatric patients with sickle cell disease are at greater risk for exhibiting nocturnal enuresis (bedwetting) compared to the general population. This increased risk has been attributed to a decreased ability to concentrate urine caused by sickling-induced nephropathy. The sociodemographic, psychosocial, and medical factors associated with nocturnal enuresis are not well defined. In addition, the impact of these behaviors on emotional and behavioral functioning, along with health-related quality of life are not clear. Despite the availability of evidence-based interventions for nocturnal enuresis, very few families with a child with sickle cell disease have utilized these methods. The reasons for this underutilization of interventions are not clear.
PRIMARY OBJECTIVE: To examine differences between those who do and those who do not exhibit
nocturnal enuresis in regard to health-related quality of life, emotional and behavioral
functioning, family functioning, stressful life events, sociodemographic factors and medical
factors.
SECONDARY OBJECTIVE: To identify barriers to intervention implementation for nocturnal
enuresis.
In this study, children and adolescents with sickle cell disease ages 6-18 years and their
parents/guardians will each complete an interview with questionnaires assessing nocturnal
enuresis, health-related quality of life, emotional and behavioral functioning, family
functioning, and stressful life events. Participants who report nocturnal enuresis will
identify interventions they have used in the past, along with barriers to intervention
implementation.
The future goal will be to use this information to develop an effective intervention
strategy for nocturnal enuresis specific to the needs of children and adolescents with
sickle cell disease.
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Observational Model: Cohort, Time Perspective: Prospective
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