Financial Stress, Hematologic Cancer, Survivorship
Conditions
Keywords
financial navigation, quality of life, hardship, caregivers, financial toxicity
Brief summary
The overall objective of this study is to develop and implement CC LinksTele (Coverage and Cost-of-Care Links- Telehealth)- a multilevel intervention designed to empower pediatric cancer patients, caregivers, and healthcare teams with the resources to reduce financial toxicity by addressing patient and caregiver financial health literacy (individual-level) and cancer care delivery pathways and workflows to address financial hardship (health system-level).
Interventions
OTHERCC LinksTele
Study participants will be contacted by a TRIAGE Cancer staff member via phone and will receive one-on-one education, coaching and/or navigation of cancer-related financial and/or legal issues. These navigation sessions can take an average of 1 to 3 hours depending on the participants needs.
Sponsors
Jean Edward
Kentucky Cabinet for Health and Family Services, Kentucky Pediatric Cancer Research Trust Fund
Study design
Allocation
NA
Intervention model
SINGLE_GROUP
Primary purpose
HEALTH_SERVICES_RESEARCH
Masking
NONE
Eligibility
Sex/Gender
ALL
Age
18 Years to 65 Years
Healthy volunteers
Yes
Inclusion criteria
* receiving or have received services at Danceblue clinic * adult patient with pediatric cancer diagnosis * caregiver of pediatric patient with cancer diagnosis
Exclusion criteria
\- unable to provide consent
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Program Acceptability | Approximately 8 months (baseline and following resolution of financial needs) | Acceptability will be measured as mean post-intervention ratings of greater than 7-10 on financial navigation program relevance, helpfulness, convenience, recommendation to others and value (0=not at all to 10=extremely). Higher scores indicate greater program acceptability. |
| Change in psychological response (financial toxicity) | Approximately 8 months (baseline and following resolution of financial needs) | Psychological response (i.e. financial toxicity) was measured using the 11-item Comprehensive Score for Financial Toxicity (COST) that measures emotional aspects of financial hardship (financial toxicity) among cancer patients. Each item is scored on a 5-point ordinal scale ranging from 0='Not at all' to 4='Very much.' Sample items include 'My out-of-pocket expense are more than I thought they would be' and 'I am frustrated that I cannot work or contribute as much as I usually do.' Lower values indicate greater financial toxicity. |
| Change in health-related quality of life | Approximately 8 months (baseline and following resolution of financial needs) | Health-related QOL was measured using four Patient-Reported Outcomes Measurement Information System (PROMIS) scales.xx Each of these were scored and standardized by submitting the raw values to the HealthMeasures scoring service. standardized values of the total scores were used throughout the analysis for this study. The four scales include the PROMIS physical health and emotional health subscales (from the 10-item PROMIS Scale v1.2 - Global Health),xx the 4-item PROMIS- Anxiety Short Form, and the 6-item PROMIS-Depression Short Form. The physical (physical health, function, pain, and fatigue items) and emotional health (QOL, mental health, social activities, and emotional problem items) subscales are each based on 4 items, with higher scores indicating a more positive health self-assessment. For the anxiety and depression scales, higher scores indicate a greater manifestation of symptoms. |
| Change in distress. | Approximately 8 months (baseline and following resolution of financial needs) | Distress was measured using the National Comprehensive Cancer Network's (NCCN) Distress Thermometer and its accompanying 40-item problem list. A cutoff score of 4 indicated clinically elevated distress levels |
| Change in health insurance literacy | Approximately 8 months (baseline and following resolution of financial needs) | single item, yes/no question "Did you ever have a problem understanding health insurance or medical bills related to your cancer, its treatment, or the lasting effects of that treatment?" |
| Program Feasibility | 8 months | Feasibility will be measured using the entire sample of program participants and will be defined by number enrolled |
| Program Adherence | 8 months | Adherence will be measured using the entire sample of program participants and will be defined by percentage of participants that maintain communication and provide required information to resolve financial issues |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Financial Savings | Approximately at 8 months (following resolution of financial needs) | Amount of money saved per patient including grants and financial assistance received, total charges, financial assistance adjustments, insurance payments, and insurance charges. |
Countries
United States
Contacts
PRINCIPAL_INVESTIGATORJean S Edward, PhD, RN
University of Kentucky
Outcome results
None listed