Assessment of the Current State of Survivor-Focused Cancer Care in the Adolescent and Young Adult population in rural Southwestern Indiana
Brief description of study
The goal of this proposal is to create an opportunity and a platform for rural AYA survivors to inform the medical community which barriers impact their access to healthcare.
Consistent with most oncology trials, patients are not actively “recruited,” but are screened by their physician for appropriate clinical trial(s) at the time of their routine clinic visit. Occasionally, a patient may be a self-referral or physician referral, but are still screened for appropriate clinical trials at the time of their routine clinic visit. PI and staff may send copies of relevant consent forms to these patients to look over prior to actually consenting or enrolling them. This may take place at the patient's visit at which the consent is presented or the patient's next visit to the outpatient hematology/oncology clinic.
Detailed description of study
This study will involve one-on-one interviews and on-line focus groups. The virtual activities can be done wherever the study participant has access to reliable internet and privacy to participate in study activities. This could include any of the above locations. We will ask that participants participate in a space they feel is safe and will provide privacy for themselves. If activities (such as interviews) are in-person, they will be conducted at a site that does not require permission.
Step 1: Following approval of eligibility, each survivor will be asked to complete the Household Material Hardship survey. The HMH survey takes 5-10 minutes to complete and includes measures across the following domains: 1) Demographics; 2) HMH; 3) Income and Financial Strain; and 4) Parent Well-being.
Step 2: The subjects will then be given access to an on-line workbook to complete with questions focused on the health issues they have since finishing treatment and the barriers they have experienced to obtaining services or resources for continued healthcare surrounding their health issue.
Step 3: After completing the workbook, the survivor will meet with one of the study team (in-person or on zoom) for a one-on-one interview to go through the workbook and discuss the questions. The interview will be recorded for later review. The goal of this session is to understand not only the barriers to healthcare, but also a review of the workbook itself. All participants will be asked to comment and provide edits on the workbook for a future revision.
Step 4: Study team members will review all interviews and analyze them for key themes.
Step 5: Results from step 4 will be given to the research Jam team and they will add the results to the previous findings. Research Jam will then revise the first version of the workbook to better reflect the input from the participants.
Step 6: The Research Jam team along with our research team will conduct a final qualitative analysis from answers received from the focus group and all interviews to create a final workbook version that can be sent to a larger cohort of AYA survivors across the state of Indiana.
Eligibility of study
You may be eligible for this study if you meet the following criteria:
- Conditions: Cancer
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Age: 15 years - 39 years
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Gender: All
Participants will be eligible for this study if they are:
• Are age ≥ 15 and ≤ 39 years,
• Are able to read and speak English,
• Have a history of cancer, other than non- malignant skin cancer, and
• Have completed all treatment or are on maintenance therapy such as low dose chemotherapy, hormonal or antibody therapy, either with curative or palliative intent.
- Participants will be ineligible for this study if they have:
- Only had surgery for their treatment (no chemotherapy or radiation)
