Using Survivor Data to Drive Policy and Program Innovation for Children with Limb Amputations

Link to original article: St. Jude Survivorship Portal: Sharing and Analyzing Large Clinical and Genomic Datasets from Pediatric Cancer Survivors

Data Overview

The analysis used data from the St. Jude Lifetime Cohort Study (SJLIFE), a large, well-characterized cohort of adult survivors of childhood cancer.

Key data elements included:

• Population: Over 5,000 childhood cancer survivors

• Mental health outcome: SF36 Mental Health Summary Scale, analyzed as both a continuous score and a binary indicator of poor mental health (score < 40)

Clinical variables:

• • Limb amputation status (yes/no)

  • Age at cancer diagnosis, grouped as under 10 years and 10 years or older

Demographics: Sex

Analytical tools:

• • Visual analytics (violin and scatter plots)

  • Logistic regression with interaction terms
    
    

This dataset allowed decision-makers to examine not only whether outcomes differed, but for whom and under what conditions those differences were most pronounced.

Analytical Findings

Using the portal’s visualization tools, analysts first compared mental health scores between survivors with and without amputations. Surprisingly, survivors with amputations showed slightly higher overall mental health scores.

However, deeper analysis revealed a critical distinction:

• Among survivors with amputations, mental health outcomes improved as age at diagnosis increased.

• Survivors amputated before age 10 had significantly lower mental health scores than those amputated at age 10 or older.
  
  

To validate this insight, a logistic regression analysis was conducted with an interaction between age at diagnosis and amputation status. The results confirmed a statistically significant interaction:

• Survivors amputated at age 10 or older had a 56% lower risk of poor mental health compared to non-amputees.

• Survivors amputated before age 10 had a 78% higher risk of poor mental health compared to non-amputees.
  
  

These findings demonstrated that age at diagnosis fundamentally changes how amputation affects long-term mental health.

Strategic Implications for Hospitals

From a business and policy perspective, these insights highlighted a gap in existing care models. Younger children undergoing amputation face compounded risk—not only physical disability, but also long-term psychological and social exclusion.

The data supported a shift from a one-size-fits-all survivorship model to age-targeted intervention strategies, including:

• Early, comprehensive prosthetics programs tailored for growing children

• Long-term psychosocial support embedded into survivorship care plans

• School reintegration initiatives, including coordination with educators to reduce stigma and bullying

• Community-based programs that promote social participation, independence, and livelihood skills
  
  

These interventions were positioned not as optional services, but as investments that improve long-term outcomes and reduce downstream costs related to mental health care, unemployment, and social isolation.

Policy and Program Recommendations

Based on the analysis, hospital leadership was advised to:

1. Segment survivorship care pathways by age at treatment, rather than disability status alone

2. Expand funding for pediatric prosthetics and adaptive services, recognizing their role in mental health and social inclusion

3. Partner with schools and community organizations to support reintegration and normalize disability in childhood environments

4. Track long-term mental health outcomes as a key performance indicator for survivorship programs
   
   

Conclusion

Standard follow-up care treated amputee survivors as a single group. However, anecdotal evidence suggested that younger children struggled more with social reintegration, stigma, and self-image, potentially leading to poorer long-term mental health and reduced participation in school and community life.