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Background: The 2010 Patient Protection and Affordable Care Act (ACA) mandated landmark hospice care legislation for children at end of life. Little is known about the impact of pediatric concurrent hospice care. Objective: The purpose of this study was to examine the effect of pediatric concurrent vs standard hospice care on end-of-life care continuity among Medicaid beneficiaries. Methods: Using national Medicaid data, we conducted a quasi-experimental designed study to estimate the effect of concurrent vs standard hospice care to improve end-of-life care continuity for children. Care continuity (i.e., hospice length of stay, hospice disenrollment, emergency room transition, and inpatient transition) was measured via claims data. Exposures were concurrent hospice vs standard hospice care. Using instrumental variable analysis, the effectiveness of exposures on care continuity was compared. Results: Concurrent hospice care affected care continuity. It resulted in longer lengths of stays in hospice (β = 2.76, P <.001) and reduced hospice live discharges (β = −2.80, P <.05), compared to standard hospice care. Concurrent care was not effective at reducing emergency room (β = 2.09, P <.001) or inpatient care (β =.007, P <.05) transitions during hospice enrollment. Conclusion: Our study provides critical insight into the quality of care delivered for children at end of life. These findings have policy implications. [ABSTRACT FROM AUTHOR]

Objective: The purpose of this study was to investigate the validity and reliability of the Japanese version of the Peace, Equanimity, and Acceptance in the Cancer Experience questionnaire (PEACE-J) and to evaluate the association between the PEACE subscales and Japanese patient characteristics.Methods: A cross-sectional web-based survey was conducted among 412 patients with cancer. This survey assessed medical and demographic factors, such as the PEACE, the Coping Inventory for Stressful Situations (CISS), and the Functional Assessment of Chronic Illness Therapy - Spiritual well-being (FACIT-Sp). The forward-backward translation method was used to develop the PEACE-J. The validity of PEACE-J was evaluated by exploratory and confirmatory factor analysis, and correlation analysis between each subscale of PEACE and FACIT-Sp and CISS. The Cronbach's α and the item-total correlation of each subscale of the PEACE questionnaire were calculated to assess internal consistency reliability.Results: The factor analysis yielded two subscales corresponding to the original version: Cronbach's α coefficients were 0.84 and 0.86 for the Peaceful Acceptance of Illness subscale and the Struggle with Illness subscale, respectively. The PEACE subscales and the FACIT-Sp subscales and the CISS subscales were moderately associated with each other, including the Peaceful Acceptance to each subscale of FACIT (r = 0.22-0.55, p < 0.01); and the Peaceful Acceptance and the Struggle with Illness to CISS emotion-oriented coping (r = -0.36 and r = 0.45, p < 0.01, respectively). Married patients showed higher levels of peaceful acceptance than unmarried patients (p < 0.001). Poorer performance status, chemotherapy use, and recurrence or metastasis were significantly associated with higher levels of struggle with illness (p < 0.001).Significance Of Results: This study indicated that the PEACE-J is a valid and reliable measure of the patient's sense of acceptance, calmness or equanimity, and peace, as well as their sense of struggle or desperation concerning their illness. [ABSTRACT FROM AUTHOR]

For the sizeable subset of adolescents and young adults whose cancer is incurable, developmentally appropriate end-of-life discussions are critical. Standards of care for adolescent and young adult end-of-life communication have been established, however, many health-professionals do not feel confident leading these conversations, leaving gaps in the implementation of best-practice end-of-life communication. We present a protocol for a Delphi study informing the development and implementation of clinician training to strengthen health-professionals' capacity in end-of-life conversations. Our approach will inform training to address barriers to end-of-life communication with adolescents and young adults across Westernized Adolescent and Young Adult Cancer Global Accord countries. The Adolescent and Young Adult Cancer Global Accord team involves 26 investigators from Australia, New Zealand, the United States, Canada and the United Kingdom. Twenty-four consumers, including adolescents and young adults with cancer history and carers, informed study design. We describe methodology for a modified Delphi questionnaire. The questionnaire aims to determine optimal timing for end-of-life communication with adolescents and young adults, practice-related content needed in clinician training for end-of-life communication with adolescents and young adults, and desireability of evidence-based training models. Round 1 involves an expert panel of investigators identifying appropriate questionnaire items. Rounds 2 and 3 involve questionnaires of international multidisciplinary health-professionals, followed by further input by adolescents and young adults. A second stage of research will design health-professional training to support best-practice end-of-life communication. The outcomes of this iterative and participatory research will directly inform the implementation of best-practice end-of-life communication across Adolescent and Young Adult Cancer Global Accord countries. Barriers and training preferences identified will directly contribute to developing clinician-training resources. Our results will provide a framework to support further investigating end-of-life communication with adolescents and young adults across diverse countries. Our experiences also highlight effective methodology in undertaking highly collaborative global research. [ABSTRACT FROM AUTHOR]

Introduction: Children, adolescents, and young adults (AYAs) with cancer are a special population who are subjected to a number of unique challenges, stressors, and barriers to high-quality psychological care. In a recent systematic review of measurement properties, we found that 5 of 18 identified patient-reported outcome measures (PROMs) had sufficient psychometric properties to justify their use. A next step is to analyze the reliability of these scale scores in a reliability-generalization meta-analysis. Methods: We conducted a systematic review of three databases for all studies reporting reliability data for previously identified PROMs. Included studies were further required to include patients with cancer, or survivors of cancer, ages 2–39. We next synthesized alpha and test-retest coefficients using best statistical practices, according to prespecified subgroups, where possible. We considered a threshold of 0.7 to represent sufficient evidence of reliability. Results: Seventy-one studies were included. Overall, reliability coefficients for scale and subscale scores exceeded 0.7. Subgroup analyses were limited by incomplete reporting and a lack of sufficient studies for each subgroup; however, where conducted, these subgroup analyses showed significant differences in the reliability of self-reports versus proxy reports and original versus adapted versions of PROMs. Discussion: We recommend better reporting of reliability data in future studies of children and AYAs with cancer. We discourage relying on historical reliability data in different samples and the reporting of only ranges of reliability coefficients for subscales. Our study suggests that significant differences in the reliability of PROMs may be associated with the PROM respondent and the version of the PROM, thus highlighting the need for further investigation. [ABSTRACT FROM AUTHOR]

Background: The quality of palliative and end-of-life (EOL) care for adolescents and young adults (AYAs) with cancer remains largely unknown. Objective: To describe caregivers of AYA cancer decedents perspectives' on EOL care quality related to EOL care communication. Design: Cross-sectional observational study. Setting/Subjects: Caregivers (n = 35) of AYAs who died from a cancer diagnosis from 2013-2016 were recruited from 3 U.S. academic medical centers. Measurements: Caregiver participants completed structured surveys (FAMCARE scale and the Toolkit After-Death Bereaved Family Member Interview) by telephone to gather perceptions of quality of EOL care of their AYA cancer decedents. Results: Caregivers reported unmet needs regarding preparation for the time of death (50%), the dying process (45%) and unmet spiritual/ religious needs (38%). Lowest quality of EOL care scores related to communication and emotional support. Conclusions: Our findings call for special focus on providing information about what to expect during the dying process and adequately addressing spiritual and religious preferences during EOL care for AYAs. [ABSTRACT FROM AUTHOR]