Evaluation of Nocturnal Enuresis and Barriers to Treatment Among Pediatric Patients With Sickle Cell Disease
| Status: | Recruiting |
|---|---|
| Conditions: | Anemia |
| Therapuetic Areas: | Hematology |
| Healthy: | No |
| Age Range: | 6 - 17 |
| Updated: | 4/21/2016 |
| Start Date: | October 2013 |
| End Date: | April 2016 |
| Contact: | Jerlym Porter, PhD, MPH |
| Email: | referralinfo@stjude.org |
| Phone: | 866-278-5833 |
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.
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.
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.
INCLUSION CHARACTERISTICS:
- Child Characteristics:
- St. Jude Children's Research Hospital (SJCRH) patient with a primary diagnosis
of sickle cell disease (HbSS, HbSC, HbSβ0thalassemia, HbSβ+thalassemia)
- Age 6.0-17.99 years at the time of enrollment
- Primary language is English
- Has the cognitive capacity to complete questionnaires
- Caregiver Characteristics:
- Parent or guardian of SJCRH patient who meets above criteria
- Primary language is English
- Has the cognitive capacity to complete questionnaires
EXCLUSION CRITERIA:
- Child Characteristics:
- Experiencing current acute complications of sickle cell disease requiring
hospitalization or an acute care visit (e.g., pain crises, acute chest syndrome,
acute cerebrovascular events/stroke or active infection/fever).
- Caregiver Characteristics:
- Has a child experiencing current acute complication of sickle cell disease, such
as pain crisis, acute chest syndrome, stroke, or infection.
We found this trial at
1
site
262 Danny Thomas Pl
Memphis, Tennessee 38105
Memphis, Tennessee 38105
(901) 495-3300
Principal Investigator: Jerlym Porter, PhD, MPH
Phone: 866-278-5833
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