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Pediatric Brain Tumor Foundation Publishes Community Health Needs Assessment of Patients and Families

06/28/18

In partnership with the USC Sol Price Center for Social Innovation and with generous support from Coverys, the Pediatric Brain Tumor Foundation has completed and published a needs assessment of pediatric brain tumor patients and their families.

Many pediatric brain tumor patients face profound struggles as a result of their diagnosis and treatment. Commonly identified late effects of treatment include a decline in intellectual functioning and processing speed, performance IQ deficits, memory deficits, psychological difficulties, deficits in daily life skills, and an overall decrease in health-related quality of life. Furthermore, pediatric brain tumors have far-reaching effects beyond the patient, impacting the well-being of parents, siblings and other family members and caregivers.

As the PBTF expands family support programming to communities across the country, we wanted to hear from these families about their challenges and where they need the most support.

“It is essential for organizations to understand the populations they serve in order to meet their needs effectively. Too often organizations rely only on expert opinion to guide their practice,” said Gary Painter, PhD, assessment co-author and director of the USC Sol Price Center for Social Innovation. “In this community needs assessment, more than 900 brain tumor survivors and their family members provided important evidence on what are the biggest challenges that they face after they are faced with a brain tumor diagnosis.”

Four Key Areas of Need

The PBTF’s Community Health Needs Assessment defines the nature and extent of families’ challenges and details existing gaps in services and resources. The assessment identified four key areas of need:

1. Interpersonal and emotional distress

Interpersonal and emotional distress are consistent challenges for patients and their families. 25% of respondents reported that the patient had trouble making and keeping friends, and 20% reported that the patient feels isolated and alone. 80% of parents and caregivers expressed significant worry about the future, and 45% reported often neglecting their own well-being at considerable personal cost.

2. Logistical complications and financial hardship

40% of parents and caregivers cited logistics and financial hardship as a challenge. Treatment regimens are long and intense, often requiring parents to take unpaid leave from work to focus on their child. Moreover, many expenses are not covered by insurance. These challenges are especially severe for families with multiple children and for parents with less flexible work schedules.

3. Information gathering in medical decision making

Practitioners and families cited a need for additional support to help families navigate the health care system, assist in the coordination of care, learn medical information, and understand what resources are available to advocate for their child and family members.

4. Difficulty reintegrating patients into educational and vocational environments

Patients often experience barriers to reentering school and professional environments without a needs advocate who understands the legal landscape. This may be due to late and lasting effects from treatment, such as cognitive and emotional changes, difficulty with balance and coordination, and vision and hearing impairment.

Download our infographic summarizing the key areas here and view the full report at www.curethekids.org/healthassessmentreport.

Assessment results draw from primary data that include two surveys of 906 family members and 40 practitioners, 11 interviews with professionals in the field, and one focus group with families. This comprehensive data helps ensure the PBTF’s family support resources focus on alleviating the greatest unmet needs within the pediatric brain tumor population.

“Among other findings, I was most struck by the need for emotional support after treatment ends and the multiplicity of challenges that families and survivors face on an ongoing basis that extend many years after treatment or bereavement,” said Painter.

As a direct and immediate response to this need, the PBTF recently expanded the Butterfly Fund financial assistance program to include support for professional counseling services, such as individual and couples counseling, family counseling and grief counseling.

Next Steps: Collaborating to Fight for Families

Given the extreme vulnerability of pediatric brain tumor patients and families uncovered by the assessment, uniting the pediatric brain tumor community to address families’ needs is now more crucial than ever.

At the PBTF's Translating Discoveries to Cure the Kids (TD2) meeting in May, leaders from childhood cancer nonprofits discussed the assessment’s results and how organizations can work together more effectively to serve families.

“It was beautiful to see different nonprofits and families come together to strategize ways we can collectively help families in these areas of need,” said Kathy Riley, MPH, CHES, the PBTF’s national director of family support. “Whether it’s in the areas of family support or research, collaborating to fight for families has long been a cornerstone of the PBTF’s approach. Because of the needs assessment, we are not only willing, but also positioned to unify the broader community around a well-informed strategy for equipping, educating and empowering pediatric brain tumor families.”

Riley will next be speaking about the needs assessment and the importance of family support programs at this week’s International Symposium on Pediatric Neuro-Oncology (ISPNO) in Denver. In addition to sharing the needs assessment results during ISPNO’s nonprofit collaborative, Riley will lead a poster presentation with Mary Baron Nelson, PhD, RN, of Children’s Hospital Los Angeles. “Adding a Parent to the Brain Tumor Team” reports on the study results of a PBTF peer support intervention and its positive impact on pediatric brain tumor families’ emotional well-being and empowerment.

The PBTF encourages families, nonprofits and other interested parties to email familysupport@curethekids.org with ideas and opportunities for collaboration. Families in need of immediate assistance can reach the PBTF’s family support team via email or 800-253-6530, x306.

The PBTF commissioned the USC Sol Price Center for Social Innovation to produce the Community Health Needs Assessment, with generous support from Coverys. Report authors include Gary Painter, Jovanna Rosen, Cynthia Barboza, Saumya Lathia, Shannon Libaw, and Megan Goulding.