Barriers to Optimal End-of-Life Care for Adolescents and Young Adults With Cancer: Bereaved Caregiver Perspectives.

BACKGROUND: Adolescents and young adults (AYAs; aged 15-39 years) with cancer frequently receive intensive measures at the end of life (EoL), but the perspectives of AYAs and their family members on barriers to optimal EoL care are not well understood. METHODS: We conducted qualitative interviews with 28 bereaved caregivers of AYAs with cancer who died in 2013 through 2016 after receiving treatment at 1 of 3 sites (University of Alabama at Birmingham, University of Iowa, or University of California San Diego). Interviews focused on ways that EoL care could have better met the needs of the AYAs. Content analysis was performed to identify relevant themes. RESULTS: Most participating caregivers were White and female, and nearly half had graduated from college. A total of 46% of AYAs were insured by Medicaid or other public insurance; 61% used hospice, 46% used palliative care, and 43% died at home. Caregivers noted 3 main barriers to optimal EoL care: (1) delayed or absent communication about prognosis, which in turn delayed care focused on comfort and quality of life; (2) inadequate emotional support of AYAs and caregivers, many of whom experienced distress and difficulty accepting the poor prognosis; and (3) a lack of home care models that would allow concurrent life-prolonging and palliative therapies, and consequently suboptimal supported goals of AYAs to live as long and as well as possible. Delayed or absent prognosis communication created lingering regret among some family caregivers, who lost the opportunity to support, comfort, and hold meaningful conversations with their loved ones. CONCLUSIONS: Bereaved family caregivers of AYAs with cancer noted a need for timely prognostic communication, emotional support to enhance acceptance of a poor prognosis, and care delivery models that would support both life-prolonging and palliative goals of care. Work to address these challenges offers the potential to improve the quality of EoL care for young people with cancer.

Peace of mind among adolescents and young adults with cancer.

OBJECTIVE: Adolescents and young adults (AYAs) with cancer have high rates of psychological distress and unmet support needs. Peace of mind is an important construct among older cancer patients and parents of children with cancer but has not been explored in AYAs. We sought to evaluate the extent to which AYAs with cancer experience peace of mind and to identify factors associated with greater peace of mind. METHODS: We surveyed 193 AYAs with cancer aged 15 to 29 years within 12 weeks of diagnosis; 137 patients completed the same measures again 4 and 12 months after diagnosis. Patients were asked to report peace of mind, measured using items from the Functional Assessment of Chronic Illness, Spiritual Well-being scale (FACIT-Sp); anxiety and depression, using the Hospital Anxiety and Depression Scale (HADS); and experiences surrounding medical communication and decision making. RESULTS: Mean scores for peace of mind were 3.59 at diagnosis (range 1-5, standard deviation 0.84), with similar scores at 4 (3.53, P = .34) and 12 (3.59, P = .94) months. In a multivariable model adjusted for age and gender, patients who reported receiving high-quality information about their cancer had greater peace of mind at diagnosis (ß = .25, P = .03), whereas those who reported holding a passive role in treatment decision making (ß = -.47, P < .0001) or who had anxiety (ß = -.64, P = .0003) or depression (ß = -.51, P = .04) had lower peace of mind. CONCLUSION: Peace of mind did not improve significantly over time for AYAs with cancer. While high-quality communication may be associated with heightened peace of mind, further study is needed to clarify relationships between peace of mind and other psychological variables.

"More than just checking the box": community-based organizations on their role in Medicaid redesigns.

New York and Massachusetts 1115 Medicaid demonstration waivers aimed to prioritize social determinants of health and engage community-based organizations to improve health outcomes. This is an evaluation of community-based organizations' public comments regarding their participation in social services delivery within the 1115 waivers. Both states solicited public comments on waiver implementation to date and potential improvements. The research team extracted all publicly available comments (n = 359) made by direct service providers between November 2016 and April 2019. The sample was then limited to only comments that discussed social service provision and health care-social service partnerships (n = 58). Findings are presented in 2 stages: (1) concerns regarding delivery system reform incentive payments funding levels, timing, and flow and (2) perspectives on how states and Medicaid administrators could improve health care-community organization relationships. Resource-dependent, community-based organizations protested insufficient funding. Additional comments identified specific design, structure, and implementation aspects of the 1115 waiver that could improve partnerships. Despite 1115 waivers prioritizing social service integration, community-based organizations still feel underfunded and disenfranchised. Aligning with health care standards requires significant time and effort. Given resource constraints, the state must facilitate these investments. Community organizations' feedback can also offer guidance on waiver strategies in other states.

To address Medicaid enrollees' social needs, New York and Massachusetts have led the way in aiming to integrate community-based organizations into Medicaid policy and financing. In an evaluation examining public comments submitted by community-based organizations to state Medicaid offices, perspectives on participating in 1115 Medicaid demonstration waivers revealed 2 themes (1) financial concerns about funding, timing, and flow of payments and (2) nonfinancial suggestions for enhancing health care and community-based organization partnerships through standardized partnership standards, enhanced governance, and tailored metrics to better address social determinants of health.