Reducing Survivorship Outcome Disparities in the Rio Grande Valley
Introduction
Two thirds of survivors of childhood cancer (CCS) develop at least one moderate to severe late effect of cancer treatment. Despite a critical need for long-term follow-up, only 1/3 CCS receive survivor-focused care. Survivors living in Hidalgo, Cameron, and Starr counties face substantial socioeconomic and structural barriers to obtaining regular health care. One third of county residents and ~ half of child residents live below the federal poverty line, and one third are uninsured. The Vannie Cook Clinic (VCCC) was established in 2001 in McAllen, TX to provide pediatric hematology/oncology care to this region. Since its inception, ~900 children have been diagnosed and treated for cancer at VCCC, but less than 15% are seen for a Long-Term Survivor (LTS) visit. We established a bilingual, community-based nurse educator and Survivorship Navigator at VCCC to deliver standardized survivorship education to CCS (time point 1, TP1) and facilitate entry to LTS care at VCCC (time point 2, TP2). Here, we report an interim analyses of TP1 survey results.
Methods
TP1-eligible VCCC CCS are 1) diagnosed with cancer at age ≤ 21 years, 2) not yet seen for an LTS visit, and 3) at least six months off treatment. The Navigator approaches eligible subjects during a clinic visit for participation in this IRB-approved study (H-49372). Consenting participants watch a five-minute video in English or Spanish explaining the transition from treatment to survivorship and providing rationale for LTS care. Participants then complete a 34-item REDCap survey to assess barriers to accessing survivorship services. Survey responses are categorial or scored on a Likert scale of 1-10, and includes two items testing survivor uptake of information delivered in the video. Respondents receive $25 for completing the survey. CCS who endorse barriers are referred to the VCCC medical social worker, and all are scheduled for an LTS visit at least two years off treatment. For this interim analysis, TP1 survey results were summarized and populations compared using a Fisher Exact or t-test, as appropriate. Significance was defined as p value < 0.05.
Results
Sixty-seven families participated in TP1 between 12/12/22 and 07/07/23. Respondents were survivors (n=12) and parents of survivors (n=55); 42 took the survey in English and 25 in Spanish. Primary cancer diagnoses were: leukemia 44, lymphoma 9, solid tumor 10, CNS tumor 2, histiocytosis 2; with a mean time off therapy of 3.1 years. Eight respondents (12%) stated it was difficult to take time away from work/childcare duties to come to VCCC, 5 (8%) stated it was difficult to cover the cost of medical care. Ten respondents (15.4%) requested assistance with transportation, 21 (32.3%) requested resources for low-cost medical care, 16 (24.6%) requested resources for financial assistance, and three (4.6%) had no medical insurance. Overall, 27 respondents (40%) endorsed ≥ 1 barrier to accessing medical services. Satisfaction with the Survivorship Education video, on a scale from 1-10, was 9.4 (SD 1.1) for English and 9.2 (SD 1.7) for Spanish respondents. After watching the video, 67% recalled the immune system should return to normal ~ 6 months after treatment, but only 46% recalled the first LTS visit should be ~ 2 years after treatment. Respondents reported reduced anxiety after education (mean 4.2 ± 0.8 pre-visit, vs. 3.3 ± 0.8 post-visit), and Spanish-speakers were overall more anxious pre- and post-visit than English-speakers, though this was not significant. Presence of a barrier did not impact anxiety. Of respondents completing TP1, 85% said they were now more likely to schedule an LTS visit.
Conclusion
VCCC provides a critical service to families residing in the Rio Grande Valley. Standardized survivorship education has a positive impact on likelihood of seeking LTS care and mitigating concerns regarding late effects of cancer treatment. Future objectives include determining factors predictive of attending an LTS visit, and associations between TP1 and TP2 survey responses.