Sandra Sherman-Bien

PedsQL™ multidimensional fatigue scale in sickle cell disease: Feasibility, reliability, and validity

Sickle cell disease (SCD) is an inherited blood disorder characterized by a chronic hemolytic anemia that can contribute to fatigue and global cognitive impairment in patients. The study objective was to report on the feasibility, reliability, and validity of the PedsQL™ Multidimensional Fatigue Scale in SCD for pediatric patient self‐report ages 5–18 years and parent proxy‐report for ages 2–18 years.

PedsQL™ sickle cell disease module: Feasibility, reliability, and validity†

Sickle cell disease (SCD) is an inherited chronic disease that is characterized by complications such as recurrent painful vaso‐occlusive events that require frequent hospitalizations and contribute to early mortality. The objective of the study was to report on the initial measurement properties of the new PedsQL™ SCD Module for pediatric patient self‐report ages 5–18 years and parent proxy‐report for ages 2–18 years.

PedsQL™ sickle cell disease module

Sickle cell disease (SCD) is an inherited chronic disease that is characterized by complications such as recurrent painful vaso‐occlusive events that require frequent hospitalizations and contribute to early mortality. The objective of the study was to report on the initial measurement properties of the new PedsQL™ SCD Module for pediatric patient self‐report ages 5–18 years and parent proxy‐report for ages 2–18 years.

Cancer Related Follow-up Care among Hispanic and non-Hispanic Childhood Cancer Survivors: The Project Forward Study

Follow‐up care is critical for childhood cancer survivors (CCS), who are at high risk for comorbidities and late effects of cancer treatments. Understanding the factors associated with maintaining follow‐up care is needed, especially for Hispanic CCS, who have been under‐represented in previous studies.

Quantifying the Relationship among Hospital Design, Satisfaction, and Psychosocial Functioning in a Pediatric Hematology Oncology Inpatient Unit

Background: Studies show that hospital built environments can affect physical and psychological outcomes and healthcare satisfaction in adults, but pediatric research is sparse. Objective: To investigate the effects of the built environment on hospitalized pediatric hematology-oncology patients and their parents by testing the hypothesis that perceived built environment satisfaction mediates the relationship between the objective built environment and psychosocial functioning, as well as parental healthcare satisfaction. Methods: The hospital built environment was evaluated subjectively through the PedsQL™ Hospital Healing Environment Module satisfaction questionnaires and objectively by quantifying environmental features. Outcomes for patients and parents included present functioning and affect. Healthcare satisfaction was also assessed for parents. Structural equation modeling (SEM) was used to test the mediational hypothesis. Subjects: Participants were 90 hospitalized pediatric hematology-oncology patients and 149 parents of pediatric hematology-oncology patients. Results: For both parents and children, analyses revealed a significant positive relationship between the quality of the objective built environment and built environment satisfaction. For parents, significant relationships emerged in the expected direction between built environment satisfaction and present functioning, healthcare satisfaction, and negative affect. Conclusions: Both pediatric hematology-oncology patients and their parents can reliably report their own perceived built environment satisfaction, which is significantly related to the quality of the objective built environment. For parents, results support the mediational hypothesis, highlighting the importance that perceived built environment satisfaction plays in psychosocial functioning and healthcare satisfaction.

MENTAL HEALTH DISPARITIES BETWEEN HISPANIC AND NON-HISPANIC PARENTS OF CHILDHOOD CANCER SURVIVORS

Parents of childhood cancer survivors (CCS) experience considerable distress related to their childs cancer. However, little is known about cultural variation in this experience. We examine parental distress, specifically symptoms of post‐traumatic stress (PTSS) and depression, comparing Hispanic and non‐Hispanic parents of CCS.

Substance use among adolescent and young adult cancer survivors

Health‐promoting behaviors are recommended to childhood cancer survivors (CCS) to reduce late effects resulting from cancer treatment. Understanding factors associated with substance use is needed, especially among Hispanic CCS who are underrepresented in previous studies. The objective of this study is to examine substance use behaviors of recently treated Hispanic and non‐Hispanic CCS.

Effect of Sensorineural Hearing Loss on Neurocognitive Functioning in Pediatric Brain Tumor Survivors.

Intensified therapy with platinum‐based regimens for pediatric brain tumors has dramatically increased the number of pediatric brain tumor survivors (PBTS) but frequently causes permanent sensorineural hearing loss (SNHL). Although neurocognitive decline in PBTS is known to be associated with radiation therapy (RT), SNHL represents a potential additional contributor whose long‐term impact has yet to be fully determined.

Impact of Caregiving for a Child With Cancer on Parental Health Behaviors, Relationship Quality, and Spiritual Faith Do Lone Parents Fare Worse?

Caregiving stress has been associated with changes in the psychological and physical health of parents of children with cancer, including both partnered and single parents. While parents who indicate “single” on a demographic checklist are typically designated as single parents, a parent can be legally single and still have considerable support caring for an ill child. Correspondingly, an individual can be married/partnered and feel alone when caring for a child with serious illness. In the current study, we report the results from our exploratory analyses of parent self-reports of behavior changes during their child’s treatment. Parents (N = 263) of children diagnosed with cancer were enrolled at 10 cancer centers. Parents reported significant worsening of all their own health behaviors surveyed, including poorer diet and nutrition, decreased physical activity, and less time spent engaged in enjoyable activities 6 to 18 months following their child’s diagnosis. More partnered parents found support from friends increased or stayed the same since their child’s diagnosis, whereas a higher proportion of lone parents reported relationships with friends getting worse. More lone parents reported that the quality of their relationship with the ill child’s siblings had gotten worse since their child’s diagnosis. Spiritual faith increased for all parents.