Families' experiences accessing care after genomic sequencing in the pediatric cancer context: “It's just been a big juggle”

Author:

Vuocolo Blake1,Gutierrez Amanda M.2,Robinson Jill O.2,Recinos Alva M.34,Desrosiers Lauren R.34,Majumder Mary A.2,Bernini Juan Carlos35,Gill Jonathan6,Griffin Timothy37,Tomlinson Gail E.8,Vallance Kelly9,McGuire Amy L.2,Parsons D. Williams34,Plon Sharon E.34,Scollon Sarah34ORCID

Affiliation:

1. Department of Molecular and Human Genetics, School of Health Professions Baylor College of Medicine Houston Texas USA

2. Center for Medical Ethics and Health Policy Baylor College of Medicine Houston Texas USA

3. Department of Pediatrics Baylor College of Medicine Houston Texas USA

4. Texas Children's Cancer Center Texas Children's Hospital Houston Texas USA

5. Cancer and Hematology Clinic Vannie E. Cook Clinic McAllen Texas USA

6. UT MD Anderson Cancer Center Children's Cancer Hospital Houston Texas USA

7. Department of Pediatric Hematology‐Oncology Children's Hospital of San Antonio San Antonio Texas USA

8. UT Health Science Center Greehey Children's Cancer Research Institute and Division of Pediatric Hematology‐Oncology San Antonio Texas USA

9. Cook Children's Hematology and Oncology Cook Children's Hospital Forth Worth Texas USA

Abstract

AbstractAccess to genomic sequencing (GS) and resulting recommendations have not been well described in pediatric oncology. GS results may provide a cancer predisposition syndrome (CPS) diagnosis that warrants screening and specialist visits beyond cancer treatment, including testing or surveillance for family members. The Texas KidsCanSeq (KCS) Study evaluated implementation of GS in a diverse pediatric oncology population. We conducted semi‐structured interviews (n = 20) to explore experiences of KCS patients' families around learning about a CPS diagnosis and following up on recommended care. We used qualitative content analysis to develop themes and subthemes across families' descriptions of their experiences accessing care and to understand which factors presented barriers and/or facilitators. We found participants had difficulty differentiating which follow‐up care recommendations were made for their child's current cancer treatment versus the CPS. In families' access to follow‐up care for CPS, organizational factors were crucial: travel time and distance were common hardships, while coordination of care to streamline multiple appointments with different providers helped facilitate CPS care. Financial factors also impacted families' access to CPS‐related follow‐up care: having financial assistance and insurance were facilitators for families, while costs and lack of insurance posed as barriers for patients who lost coverage during transitions from pediatric to adult care, and for adult family members who had no coverage. Factors related to beliefs and perceptions, specifically perceiving the risk as less salient to them and feeling overwhelmed with the patient's cancer care, presented barriers to follow‐up care primarily for family members. Regarding social factors, competing life priorities made it difficult for families to access follow‐up care, though having community support alleviated these barriers. We suggest interventions to improve coordination of cancer treatment and CPS‐related care and adherence to surveillance protocols for families as children age, such as care navigators and integrating longitudinal genetic counseling into hereditary cancer centers.

Funder

National Society of Genetic Counselors

Publisher

Wiley

Reference42 articles.

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