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The Delivery of Palliative and End-of-Life Care to Adolescents and Young Adults Living with Cancer: A Scoping Review

JOURNAL OF ADOLESCENT AND YOUNG ADULT ONCOLOGY (2023)

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Occupational therapy in oncology palliative care for adolescents and young adults: Perspectives of Australian occupational therapists

Amy Wallis et al.

Summary: The study found that current needs for adolescents and young adults in palliative care in Australia are unmet, with issues such as lack of age-specific palliative care facilities and insufficient psycho-social and occupational therapy services. Occupational therapists perceived a lack of palliative care services for this population within Australia, and identified main occupational needs as maintaining as normal a life as possible, including maintaining occupational role engagement, continuing connection with others, and being heard regarding their occupational needs.

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Article Oncology

Evaluating Palliative Opportunities Across the Age Spectrum in Children and Adolescent Patients with Cancer

Emily J. Labudde et al.

Summary: Adolescent patients with cancer did not experience more palliative opportunities compared to younger patients in this study. However, they often face challenging psychological, family, and social stressors that are not identified. Incorporating additional palliative opportunities could help identify stress and symptoms in adolescents with cancer to better meet their needs.

JOURNAL OF ADOLESCENT AND YOUNG ADULT ONCOLOGY (2022)

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Article Oncology

A Descriptive Cohort Study of Adolescent and Young Adult Decedents Known to an Australian Comprehensive Cancer Center

Naomi T. Katz et al.

Summary: In Australia, cancer is the second leading cause of death in adolescents and young adults. Most patients were male with parents as primary carers, and a significant portion of those who wanted to die at home were able to do so.

JOURNAL OF ADOLESCENT AND YOUNG ADULT ONCOLOGY (2022)

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Article Oncology

Locus-of-care disparities in end-of-life care intensity among adolescents and young adults with cancer: A population-based study using the IMPACT cohort

Hallie Coltin et al.

Summary: Adolescents and young adults with cancer may receive high-intensity end-of-life care, with pediatric care and rural residence associated with higher odds of ICU death.

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Moving from consultation to co-creation with knowledge users in scoping reviews: guidance from the JBI Scoping Review Methodology Group

Danielle Pollock et al.

Summary: Knowledge user consultation is important in scoping reviews, but there is currently a lack of research in this area. This paper presents JBI's guidance for knowledge user engagement in scoping reviews, emphasizing the benefits of consultation and how to report and evaluate it.

JBI EVIDENCE SYNTHESIS (2022)

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Article Oncology

Palliative Care Referral Patterns for Adolescent and Young Adult Patients at a Comprehensive Cancer Center

Bethany J. Lockwood et al.

Summary: The study found that although palliative care is beneficial for cancer patients, referrals to PC among AYAs aged 18-39 occurred at a low percentage and mostly in inpatient settings, with the highest rates observed in lung cancer.

JOURNAL OF ADOLESCENT AND YOUNG ADULT ONCOLOGY (2021)

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A call to action: Antiracist patient engagement in adolescent and young adult oncology research and advocacy

Christabel K. Cheung et al.

Summary: Amid the current global crises, medical professionals are simultaneously fighting against COVID-19 and addressing the impacts of systemic racism within healthcare institutions. In the field of adolescent and young adult oncology, clinicians, researchers, and advocates must work together to advance antiracist approaches in research and advocacy to protect vulnerable racial and ethnic minority patients. Critical review of existing practices is necessary to ensure ethical and effective research methods are employed to engage with these patients.

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A Stakeholder-Driven Qualitative Study to Define High Quality End-of-Life Care for Children With Cancer

Prasanna Ananth et al.

Summary: Stakeholders in childhood cancer care prioritize direct communication with children, interdisciplinary care, symptom management, and honoring family preference for location of death. Access to emergency department or hospital for supportive care is valued by many, but most wish to avoid mechanical ventilation and cardiopulmonary resuscitation.

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Supporting the Needs of Adolescents and Young Adults: Integrated Palliative Care and Psychiatry Clinic for Adolescents and Young Adults with Cancer

Mohamed Abdelaal et al.

Summary: Adolescents and young adults with cancer often experience high levels of distress and lack effective palliative care services. Establishing a specialized integrated palliative care and psychiatry clinic has shown promising results in improving symptom scores and end-of-life planning.

CANCERS (2021)

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Article Oncology

Sociodemographic and hospital-based predictors of intense end-of-life care among children, adolescents, and young adults with hematologic malignancies

Sophia Mun et al.

Summary: A majority of children, adolescents, and young adults with hematologic malignancies experienced high-intensity end-of-life care (HI-EOLC), with hospital size, type of insurance, and geographic region influencing the likelihood of HI-EOLC. Further research is needed to determine how to mitigate these risks.

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A novel combined resilience and advance care planning intervention for adolescents and young adults with advanced cancer: A feasibility and acceptability cohort study

Kaitlyn M. Fladeboe et al.

Summary: This study aimed to test the feasibility and acceptability of integrating advance care planning (ACP) into an existing resilience-coaching program for adolescents and young adults (AYAs) with advanced cancer. Results showed that the integrated program was well-received and did not cause distress among participants, indicating its feasibility and acceptability among AYAs with advanced cancer.

CANCER (2021)

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Article Oncology

Impact of Palliative Care Involvement on End-of-Life Care Patterns Among Adolescents and Young Adults With Cancer: A Population-Based Cohort Study

Alisha Kassam et al.

Summary: Evidence suggests that a significant proportion of adolescents and young adults with cancer receive high-intensity end-of-life care, but the involvement of palliative care physicians can help mitigate this risk.

JOURNAL OF CLINICAL ONCOLOGY (2021)

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Article Medicine, General & Internal

Patient, Family, and Clinician Perspectives on End-of-Life Care Quality Domains and Candidate Indicators for Adolescents and Young Adults With Cancer

Jennifer W. Mack et al.

Summary: This qualitative study identified 7 distinct end-of-life priority domains for adolescents and young adults with cancer, including attention to physical symptoms, quality of life, psychosocial and spiritual care, communication and decision-making, relationships with clinicians, care and treatment, and independence. Some domains were unique or had distinct manifestations for this young population, suggesting the need for new indicators to better reflect patient-centered experiences.

JAMA NETWORK OPEN (2021)

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Review Health Care Sciences & Services

The delivery of palliative and end-of-life care to adolescents and young adults living with cancer: a scoping review protocol

Emily K. Drake et al.

Summary: This review focuses on providing an overview of evidence related to the delivery of palliative and end-of-life care to adolescents and young adults living with cancer. It highlights the special needs of adolescents and young adults in receiving care and the current lack of understanding in this area.

JBI EVIDENCE SYNTHESIS (2021)

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Article Psychology, Clinical

Health Disparities: Barriers to Building Evidence for Effective Palliative End-of-Life Care for Spanish-Speaking Teens With Cancer

Maureen E. Lyon et al.

Summary: This study adapted and refined a pACP intervention for Spanish-speaking adolescents with cancer through community-based participatory approach and key informant interviews, resulting in a culturally adapted and manualized curriculum. The findings suggest that pACP would be feasible in this population following community education.

CLINICAL PRACTICE IN PEDIATRIC PSYCHOLOGY (2021)

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Article Oncology

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

Jennifer W. Mack et al.

Summary: The study highlighted three main barriers to optimal end-of-life care for adolescents and young adults with cancer: delayed or absent communication about prognosis, inadequate emotional support, and lack of home care models that can support both life-prolonging and palliative goals of care. These barriers created lingering regrets among family caregivers and emphasized the need to improve end-of-life care services to better meet the needs of young cancer patients.

JOURNAL OF THE NATIONAL COMPREHENSIVE CANCER NETWORK (2021)

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Documentation of Palliative and End-of-Life Care Process Measures Among Young Adults Who Died of Cancer: A Natural Language Processing Approach

Hanneke Poort et al.

JOURNAL OF ADOLESCENT AND YOUNG ADULT ONCOLOGY (2020)

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Article Oncology

End-of-life care among adolescent and young adult patients with cancer living in poverty

Eric J. Roeland et al.

CANCER (2020)

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Examining key sociodemographic characteristics of adolescents and young adults with cancer: A post hoc analysis of the Promoting Resilience in Stress Management randomized clinical trial

Nancy Lau et al.

PALLIATIVE MEDICINE (2020)

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The Experiences of Young Adults Living with Metastatic/Advanced Cancer: A Scoping Review

Emily K. Drake et al.

JOURNAL OF ADOLESCENT AND YOUNG ADULT ONCOLOGY (2020)

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Article Oncology

?It?s More Difficult??: Clinicians? Experience Providing Palliative Care to Adolescents and Young Adults Diagnosed With Advanced Cancer

Jonathan Avery et al.

JCO ONCOLOGY PRACTICE (2020)

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Article Medicine, General & Internal

Congruence Gaps Between Adolescents With Cancer and Their Families Regarding Values, Goals, and Beliefs About End-of-Life Care

Sarah Friebert et al.

JAMA NETWORK OPEN (2020)

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Article Oncology

Young Adult Experience in an Outpatient Interdisciplinary Palliative Care Cancer Clinic

Jonathan Avery et al.

JCO ONCOLOGY PRACTICE (2020)

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Review Health Care Sciences & Services

Updated methodological guidance for the conduct of scoping reviews

Micah D. J. Peters et al.

JBI EVIDENCE SYNTHESIS (2020)

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Article Nursing

Interdisciplinary Communication Documentation of Advance Care Planning and End-of-Life Care in Adolescents and Young Adults With Cancer

Anne Watson et al.

JOURNAL OF HOSPICE & PALLIATIVE NURSING (2019)

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Article Health Care Sciences & Services

Palliative Care Usage in Young Adult Oncology Population

Kelly D. Foster et al.

JOURNAL OF PALLIATIVE MEDICINE (2019)

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Article Oncology

An Exploratory Study into the Experience of Health Care Professionals Caring for Adolescents and Young Adults with Incurable Cancer

Ilana Berger et al.

JOURNAL OF ADOLESCENT AND YOUNG ADULT ONCOLOGY (2019)

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Preferences Regarding End-of-Life Care Among Adolescents and Young Adults With Cancer: Results From a Comprehensive Multicenter Survey in Japan

Hidekazu Hirano et al.

JOURNAL OF PAIN AND SYMPTOM MANAGEMENT (2019)

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Location of Death and End-of-Life Characteristics of Young Adults with Cancer Treated at a Pediatric Hospital

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JOURNAL OF ADOLESCENT AND YOUNG ADULT ONCOLOGY (2019)

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It Could Have Been Me: An Interpretive Phenomenological Analysis of Health Care Providers' Experiences Caring for Adolescents and Young Adults with Terminal Cancer

Perri R. Tutelman et al.

JOURNAL OF ADOLESCENT AND YOUNG ADULT ONCOLOGY (2019)

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A Retrospective Analysis of Pain Burden in Hospitalized Young Adult Cancer Patients Compared with Their Older Adult Counterpart

Shannon M. Devlin et al.

JOURNAL OF PALLIATIVE MEDICINE (2019)

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Refinement of a Conceptual Model for Adolescent Readiness to Engage in End-of-Life Discussions

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CANCER NURSING (2018)

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Saran Yoshida et al.

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Advance Care Planning Discussions with Adolescent and Young Adult Cancer Patients Admitted to a Community Palliative Care Service: A Retrospective Case-Note Audit

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Andrea C. Tricco et al.

ANNALS OF INTERNAL MEDICINE (2018)

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Briony F. Hudson et al.

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Palliative Care Involvement Is Associated with Less Intensive End-of-Life Care in Adolescent and Young Adult Oncology Patients

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