Age-Specific Patient Navigation Preferences Among Adolescents and Young Adults with Cancer.

BACKGROUND: Patient navigation is increasingly being directed at adolescent and young adult (AYA) patients. This study provides a novel description of differences in AYA cancer patients' preferences for navigation services by developmental age at diagnosis. METHODS: Eligible patients were diagnosed with cancer between ages 15 and 39 and had completed at least 1 month of treatment. Between October 2015 and January 2016, patients completed semi-structured interviews about navigation preferences. Summary statistics of demographic and cancer characteristics were generated. Differences in patient navigation preferences were examined through qualitative analyses by developmental age at diagnosis. RESULTS: AYAs were interviewed (adolescents 15-18 years N = 8; emerging adults 19-25 years N = 8; young adults 26-39 years N = 23). On average, participants were 4.5 years from diagnosis. All age groups were interested in face-to-face connection with a navigator and using multiple communication platforms (phone, text, email) to follow-up. Three of the most frequently cited needs were insurance, finances, and information. AYAs differed in support, healthcare, and resource preferences by developmental age; only adolescents preferred educational support. While all groups preferred financial and family support, the specific type of assistance (medical versus living expenses, partner/spouse, child, or parental assistance) varied by age group. CONCLUSIONS: AYAs with cancer have different preferences for patient navigation by developmental age at diagnosis. AYAs are not a one-size-fits-all population, and navigation programs can better assist AYAs when services are targeted to appropriate developmental ages. Future research should examine fertility and navigation preferences by time since diagnosis. While some navigation needs to span the AYA age range, other needs are specific to developmental age.

Age-Related Differences in Financial Toxicity and Unmet Resource Needs Among Adolescent and Young Adult Cancer Patients.

Financial toxicity may differ by age at diagnosis between adolescents and young adults (AYAs) with cancer. We surveyed 52 AYA cancer patients about unmet needs and financial toxicity using the COmprehensive Score for financial Toxicity (COST). We compared outcomes by age at diagnosis (15-25-year olds [n = 25, 48%] vs. 26-39-year olds [n = 27, 52%]). AYAs diagnosed ages 26-39 reported that cancer negatively affected their finances more than 15-25-year olds (77.8% vs. 37.5%, p = 0.0005). Lower mean COST scores among those diagnosed ages 26-39 indicated greater financial toxicity compared to those 15-25 years (18.22 vs. 24.84, p = 0.02). Financial burden appears to be greater for older AYAs with cancer.

Patient Navigation Preferences for Adolescent and Young Adult Cancer Services by Distance to Treatment Location.

PURPOSE: To describe how distance to treatment location influences patient navigation preferences for adolescent and young adult (AYA) cancer patients and survivors. METHODS: This study is part of a statewide needs assessment to inform the development of an AYA cancer patient and survivor navigation program. Participants were recruited from outpatient oncology clinics in Utah. Eligible participants had been diagnosed with cancer between ages 15-39 and had completed at least 1 month of treatment. Participants completed a semi-structured interview on preferences for patient navigation. Summary statistics of demographic and cancer characteristics were generated. Thematic content analysis was used to describe navigation preferences among participants classified as distance (≥20 miles) and local (<20 miles), to explain differences in their needs based on distance from their treatment center. RESULTS: The top three patient navigation needs were general information, financial, and emotional support. More local patients were interested in patient navigation services (95.2%) compared to distance participants (77.8%). Fewer local (38.1%) than distance participants (61.1%) reported challenges getting to appointments, and distance patients needed specific financial support to support their travel (e.g., fuel, lodging). Both local and distance patients desired to connect with a navigator in person before using another form of communication and wanted to connect with a patient navigator at the time of initial diagnosis. CONCLUSION: Distance from treatment center is an important patient navigation consideration for AYA cancer patients and survivors. After initially connecting with AYAs in person, patient navigators can provide resources remotely to help reduce travel burden.