Cancer in Adolescence
Conditions
Keywords
Cancer, Adolescents, Young adults, Financial needs, Social needs, Minority health, Caregivers
Brief summary
The overall aim of the study is to address unmet health-related social needs and reduce outcome disparities among AYA (adolescent and young adult) cancer survivors. Aim 1 aimed to refine a needs navigation model in partnership with expert consultants. Aim 2 and 3 will involve the deployment and pilot testing of the adapted needs navigation intervention among caregivers of younger AYAs with cancer.
Detailed description
Financial toxicity, the negative personal financial impact of healthcare, is a highly prevalent adverse effect of cancer treatment, and AYA cancer survivors experience disproportionately higher rates of financial toxicity compared to older cancer survivors. Financial toxicity is associated with poorer overall survival and bankruptcy, and AYA survivors are 10 times more likely to file for bankruptcy than older cancer survivors. Thus, financial toxicity and unmet HRSN (health-related social needs) are key contributors to employment and health outcome disparities seen among AYA survivors living in areas of persistent poverty. The study team has focused on addressing unmet HRSN and reducing outcome disparities among AYA cancer survivors, many of whom live in areas of persistent poverty. The investigators have adapted a model of financial navigation that reduces financial toxicity among older adults with cancer, informed by qualitative research among Spanish- and English-speaking AYAs and their caregivers from the local community. The investigators have identified community and clinical partners poised to address these unique unmet needs. These partners have expertise in educational navigation and caregiver community resources - both cited as unmet needs in our pilot study. Using mixed methods, this study will refine (Aim 1 - already completed) and pilot test (Aims 2 and 3) a tailored version of the intervention among 30 English and Spanish-speaking caregivers of younger AYAs who screen positive for severe financial toxicity or unmet HRSN. Aim 3 will also be achieved by having caregivers complete qualitative and quantitative assessments measured at baseline, 3 and 6 months to identify factors that are associated with financial toxicity. Qualitative data will be collected from participants in this study as well as participants from our AYA-NAV trial to better understand these factors and explore AYAs/Caregiver perception on screening for school-based needs and educational guidance sessions.
Interventions
BEHAVIORALNeeds navigation intervention
The investigator anticipates that this will include a baseline financial, education and vocational assessment, likely using a virtual platform. Participants who screen positive will be connected to community resources and for consultation. There will be a 1-month, 3-month and 6-month check-in to address any financial concerns through additional counseling/navigation.
Sponsors
Columbia University
Study design
Allocation
NA
Intervention model
SINGLE_GROUP
Primary purpose
HEALTH_SERVICES_RESEARCH
Masking
NONE
Intervention model description
Participants who screen positive all move forward to receive the intervention
Eligibility
Sex/Gender
ALL
Age
15 Years to 26 Years
Healthy volunteers
Yes
Inclusion criteria
We are enrolling dyads (AYA and caregivers) for this study. AYA patient participants: * Age 15 - 26 years old * English or Spanish-speaking * In between 3-months of diagnosis of cancer date and up to 1-year post-treatment completion without progression or recurrence of cancer Caregiver/financial partner participants: * Parent or financially-responsible adult of non-adult AYA (\<18 years) OR * Identified by the AYA as caregiver, parent, or partner who is financially-responsible or a financial partner for AYA
Exclusion criteria
* Dyad with caregiver or younger AYA that previously participated in study AAAU2405 * Unable to complete financial survey questions or contraindicated (as outlined in Protection of Human Subjects) * Dyad with younger AYAs who are enrolled on hospice or receiving other end-of-life care
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Number of (OR percentage of) participants who completed the intervention | up to 6 months | This is to assess the feasibility of intervention completion. Intervention completion is defined as participants who have demonstrated contact for consultation and with community partners at any time before the end of 6 months. |
| Percentage of eligible participants who consented to be in study | Up to 6 months | This is to measure interest and the need for help by the intervention that can provide caregiver / patient financial education and navigation |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Personal Financial Wellness Scale (PFWS) / Comprehensive Score of Financial Toxicity (COST measure) | Baseline, 6-months | The PFWS/ COST is a participant-reported outcome measure that describes financial distress in cancer patients or their caregivers. |
Countries
United States
Outcome results
None listed