SWK-03. CAREGIVER EXPERIENCES FOR PEDIATRIC BRAIN TUMOR PATIENTS AND THEIR FAMILIES AT A DEDICATED MEDICAL SPECIALTY CAMP

Abstract BACKGROUND Medical specialty camps have provided children with unique psychosocial experiences; however, dedicated pediatric brain tumor camps are rare in the United States, except in limited locations. This study aimed to glean caregiver perceptions from a dedicated family brain tumor camp, and to learn about the family experience with navigating a neuro-oncology diagnosis. DESIGN: Flying Horse Farms is a non-profit organization located in Mt. Gilead, Ohio and a member of the SeriousFun Children’s Network, a global community of camps and programs serving children with serious illnesses and their families, at no cost. The institutional review board at Ohio University approved this project at Flying Horse Farms in September 2017. Consent from caregivers was obtained prior to participation in the study, which provided the opportunity to complete three separate phases: a pre-camp survey, attend a semi-structured interview during the weekend, and complete a post-camp survey. RESULTS 11 families were present for the weekend, and 10 families consented to participate in all three phases. For 6 families, this was their first experience at Flying Horse Farms. For 9 of the 10 families, the camp met their expectations. Additionally, 9 out of 10 families reported they would be interested in attending a diagnosis specific camp again in the future. CONCLUSIONS This work demonstrates the feasibility of conducting research at a medical specialty camp without restricting the camp experience. Better understanding of the attendee’s attitudes toward camp may enhance the experience and the neuro-oncology journey in the future.

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QOL-51. LISTENING BEFORE WE SPEAK: A PATIENT-CENTERED APPROACH TO DEVELOPING RESOURCES FOR PEDIATRIC BRAIN TUMOR SURVIVORS AND THEIR FAMILIES

Neuro-Oncology ◽

10.1093/neuonc/noaa222.705 ◽

2020 ◽

Vol 22 (Supplement_3) ◽

pp. iii440-iii440

Author(s):

Kathy Riley

Keyword(s):

Quality Of Life ◽

Mental Health ◽

United States ◽

Brain Tumor ◽

Mental Health Professionals ◽

Pediatric Brain Tumor ◽

The United States ◽

Physical And Mental Health ◽

Pediatric Brain

Abstract In the United States, more than 28,000 children and teenagers live with the diagnosis of a primary brain tumor (Porter, McCarthy, Freels, Kim, & Davis, 2010). In 2017, an estimated 4,820 new cases of childhood primary brain and other central nervous system tumors were expected to be diagnosed in children ages 0 – 19 in the United States (Central Brain Tumor Registry of the United States, 2017). Survivors suffer from lifelong side effects caused by their illness or by various treatments. Commonly identified late effects of treatment include a decline in intellectual functioning and processing speed, performance IQ deficits, memory deficits, psychological difficulties, deficits in adaptive functioning (daily life skills), and an overall decrease in health-related quality of life (Castellino, Ullrich, Whelen, & Lange, 2014). To address the ongoing challenges these survivors and their families face, the Pediatric Brain Tumor Foundation (PBTF) met extensively with working groups comprised of survivors and caregivers to develop the outline for a comprehensive Survivorship Resource Guidebook. In 2019, the PBTF published the guidebook which categorizes survivor and caregiver needs into three primary areas: physical and mental health, quality of life, and working the system. Expert authors included survivors and caregivers themselves in addition to medical and mental health professionals. Key outcomes discovered during the creation and production of this resource highlight how caregivers, survivors and professionals can collaborate to provide needed information and practical help to one segment of the pediatric cancer population who experience profound morbidities as a result of their diagnosis and treatment.

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Craniotomy for Resection of Pediatric Brain Tumors in the United States, 1988 to 2000: Effects of Provider Caseloads and Progressive Centralization and Specialization of Care

Neurosurgery ◽

10.1227/01.neu.0000108421.69822.67 ◽

2004 ◽

Vol 54 (3) ◽

pp. 553-565 ◽

Cited By ~ 90

Author(s):

Edward R. Smith ◽

William E. Butler ◽

Fred G. Barker

Keyword(s):

United States ◽

Brain Tumor ◽

Mortality Rate ◽

Multivariate Analyses ◽

Pediatric Brain Tumor ◽

High Volume ◽

The United States ◽

Mortality Rates ◽

Discharge Disposition ◽

Pediatric Brain

Abstract OBJECTIVE Large provider caseloads are associated with better patient outcomes after many complex surgical procedures. Mortality rates for pediatric brain tumor surgery in various practice settings have not been described. We used a national hospital discharge database to study the volume-outcome relationship for craniotomy performed for pediatric brain tumor resection, as well as trends toward centralization and specialization. METHODS We conducted a cross sectional and longitudinal cohort study using Nationwide Inpatient Sample data for 1988 to 2000 (Agency for Healthcare Research and Quality, Rockville, MD). Multivariate analyses adjusted for age, sex, geographic region, admission type (emergency, urgent, or elective), tumor location, and malignancy. RESULTS We analyzed 4712 admissions (329 hospitals, 480 identified surgeons) for pediatric brain tumor craniotomy. The in-hospital mortality rate was 1.6% and decreased from 2.7% (in 1988–1990) to 1.2% (in 1997–2000) during the study period. On a per-patient basis, median annual caseloads were 11 for hospitals (range, 1–59 cases) and 6 for surgeons (range, 1–32 cases). In multivariate analyses, the mortality rate was significantly lower at high-volume hospitals than at low-volume hospitals (odds ratio, 0.52 for 10-fold larger caseload; 95% confidence interval, 0.28–0.94; P = 0.03). The mortality rate was 2.3% at the lowest-volume-quartile hospitals (4 or fewer admissions annually), compared with 1.4% at the highest-volume-quartile hospitals (more than 20 admissions annually). There was a trend toward lower mortality rates after surgery performed by high-volume surgeons (P = 0.16). Adverse hospital discharge disposition was less likely to be associated with high-volume hospitals (P < 0.001) and high-volume surgeons (P = 0.004). Length of stay and hospital charges were minimally related to hospital caseloads. Approximately 5% of United States hospitals performed pediatric brain tumor craniotomy during this period. The burden of care shifted toward large-caseload hospitals, teaching hospitals, and surgeons whose practices included predominantly pediatric patients, indicating progressive centralization and specialization. CONCLUSION Mortality and adverse discharge disposition rates for pediatric brain tumor craniotomy were lower when the procedure was performed at high-volume hospitals and by high-volume surgeons in the United States, from 1988 to 2000. There were trends toward lower mortality rates, greater centralization of surgery, and more specialization among surgeons during this period.

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Pediatric Brain Tumor Foundation of the United States: Supporting the search for the cause and cure of childhood brain tumors

Neuro-Oncology ◽

10.1093/neuonc/1.1.27 ◽

1999 ◽

Vol 1 (1) ◽

pp. 27-29

Keyword(s):

United States ◽

Brain Tumor ◽

Brain Tumors ◽

Pediatric Brain Tumor ◽

The United States ◽

Childhood Brain Tumors ◽

Pediatric Brain

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SWK-06. ANSWERING 900 VOICES: A NATIONAL NONPROFIT ORGANIZATION RESPONDS TO A NATIONWIDE COMMUNITY HEALTH NEEDS ASSESSMENT THAT ELUCIDATED KEY CHALLENGES FACED BY PEDIATRIC BRAIN TUMOR FAMILIES

Neuro-Oncology ◽

10.1093/neuonc/noaa222.823 ◽

2020 ◽

Vol 22 (Supplement_3) ◽

pp. iii465-iii465

Author(s):

Kathy Riley

Keyword(s):

Brain Tumor ◽

Needs Assessment ◽

Community Health ◽

Social Innovation ◽

Pediatric Brain Tumor ◽

The United States ◽

Health Needs ◽

Health Needs Assessment ◽

Community Health Needs Assessment ◽

Pediatric Brain

Abstract The five-year relative survival rate for childhood primary brain and other central nervous system tumors is nearly 75 percent (Central Brain Tumor Registry of the United States, 2017). Nevertheless, childhood brain tumor survivors often suffer from lifelong side effects caused by their illness or treatments such as surgery, radiation and chemotherapy. To define the nature and extent of problems survivors and their families face, the Pediatric Brain Tumor Foundation (PBTF), the world’s largest nonprofit solely dedicated to children and teens with brain tumors, conducted a 2017 national community health needs assessment in collaboration with the Sol Price Center for Social Innovation at the University of Southern California. The assessment found that pediatric brain tumor patients and their families face key challenges in four general areas: 1) interpersonal and emotional support, 2) logistical and financial support, 3) information and medical education gathering, and 4) educational and vocational anxieties. In 2020, the PBTF’s response to the 900 assessment participants who represent the thousands living with the effects of this disease includes the launch of a national Peer to Peer Mentoring program to meet the ongoing challenges families face; the disbursement of emergency financial assistance to hundreds of families in the throes of treatment; and the distribution of a resource notebook for newly diagnosed families and a comprehensive guidebook for survivors and their families. The results of the needs assessment suggest additional clear, actionable areas for impact not only by the PBTF but by medical professionals, other nonprofit organizations and governmental agencies.

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