A Narrative Review of Models of Care for Adolescents and Young Adults with Cancer: Barriers and Recommendations

Fardell, Joanna E.; Patterson, Pandora; Wakefield, Claire E.; Signorelli, Christina; Cohn, Richard J.; Anazodo, Antoinette; Zebrack, Bradley; Sansom-Daly, Ursula M

doi:10.1089/jayao.2017.0100

Cited by 43 publications

(49 citation statements)

References 44 publications

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“…Power imbalances are particularly challenging for adolescents, who struggle to assert their autonomy as legal minors while also relying on parental support to cope with life-threatening illness. [80][81][82][83] A delicate balance exists between empowering children or adolescents with information and burdening them with responsibility and decisions. [76][77][78][79] Providing access to young adult oncology services and collaborating with adolescent physicians also may help to address developmentally relevant physical and psychosocial issues (eg, puberty, drugs and alcohol, and sexuality) and empower adolescents in their transition to adulthood and adult health care services.…”

Section: Discussionmentioning

confidence: 99%

“…[76][77][78][79] Providing access to young adult oncology services and collaborating with adolescent physicians also may help to address developmentally relevant physical and psychosocial issues (eg, puberty, drugs and alcohol, and sexuality) and empower adolescents in their transition to adulthood and adult health care services. [80][81][82][83] A delicate balance exists between empowering children or adolescents with information and burdening them with responsibility and decisions. This review found that a spectrum of differing perspectives were reported by children of all developmental ages and in studies published across different time periods.…”

Section: Strategymentioning

confidence: 99%

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Communication during childhood cancer: Systematic review of patient perspectives

Lin

Gutman

Hanson

et al. 2019

Cancer

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Effective communication is challenging in childhood cancer, where decisions carry unpredictable and life-threatening implications. We aimed to describe patients' experiences of communicating with clinicians during treatment of childhood cancer. A systematic review of qualitative studies to April 2019 was performed. Eligible studies included patients diagnosed with cancer at age ≤ 18 years and reported their perspectives of communicating with clinicians during treatment of childhood cancer. Data were extracted from primary studies for thematic synthesis. From 101 articles across 25 countries involving 1870 participants who were diagnosed with cancer between ages 3 to 18 years, we identified 6 themes: 1) rendered invisible and powerless (displaced and undermined by adult authority; betrayed and distrustful; feeling neglected; helpless and intimidated; disempowered by lack of information); 2) fear and worry for the future (paralyzed by devastating news; uncertainty, anticipation, and dread; broaching intimate and private topics); 3) burdened with responsibility (pressured and unprepared; balancing external expectations; protecting hope); 4) therapeutic patient-provider relationships (emotional support and encouragement; validated personhood and companionship); 5) safety in trust (truthfulness and transparency; prepared by awareness and understanding; reassured by reliable expertise; depending on adults for protection and difficult decisions; security in expressing opinions and needs); and 6) empowerment and assertive agency (right to individual knowledge and choice; control over own life; partnership and respect; enhancing capacity for self-management). During treatment of childhood cancer, patients gain a sense of respect, safety, and control when they feel clinicians address their information and developmental needs. However, communication that is perceived to be parent-centered can be disempowering. Promoting child agency and partnership may improve care and outcomes for children with cancer. Cancer 2020;126:701-716.

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Section: Discussionmentioning

confidence: 99%

Section: Strategymentioning

confidence: 99%

Communication during childhood cancer: Systematic review of patient perspectives

Lin

Gutman

Hanson

et al. 2019

Cancer

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“…Given the heterogeneity of healthcare delivery around the world and even within regions of a single country, there is no single best approach to incorporating an AYA cancer program into existing health services. Local AYA program development will depend on the availability of resources, infrastructure, clinical space, jurisdictional issues, and an assessment of the extent to which current services are addressing the specific needs of AYA within the region (Table ). Table outlines different organizational approaches, although in reality they sit along a spectrum with varying degrees of centralization and coordination between sites.…”

Section: Organization Of Carementioning

confidence: 99%

“…Local AYA program development will depend on the availability of resources, infrastructure, clinical space, jurisdictional issues, and an assessment of the extent to which current services are addressing the specific needs of AYA within the region 5,19,66 (Table 3). Table 4 outlines different organizational approaches, although in reality they sit along a spectrum with varying degrees of centralization and coordination between sites.…”

Section: Organization Of Carementioning

confidence: 99%

Models of care for adolescent and young adult cancer programs

Osborn

Johnson

Thompson

et al. 2019

Pediatric Blood & Cancer

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This review draws on the experience of adolescent and young adult (AYA) cancer clinicians from Australia, the United States, and the United Kingdom to summarize common aspects of models of care implemented in their countries. The principles underpinning these models include patient‐ and family‐focused care informed by an understanding of normal AYA development, enhancing existing adult or pediatric cancer services to meet the needs of AYA, and promoting collaboration between pediatric and adult oncologists. Common elements of AYA cancer care include establishing an AYA multidisciplinary team that integrates medical and psychosocial care, efforts to centralize complex care, providing access and equity for all AYA, promoting clinical trials, and helping facilitate transition to healthy survivorship. Several organizational approaches are described, noting that local program development depends on resources, infrastructure, and assessment of unmet needs within the region. The development of national networks provides opportunities for shared learning and approaches to evaluation.

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“…However, many of the newer modalities of therapy come with a poorly understood risk profile for AYAs. Clinicians working with AYA patients who have cancer are witnessing side effects in AYA patients that are not seen in younger children receiving the same therapy . Alongside this, there is evidence emerging to suggest that targeted therapies may come with significant, unanticipated, systemic side effects .…”

Section: So How Do We Identify the Reasons Why Ayas May Be At Greatermentioning

confidence: 99%

AYA survivorship: The next challenge

Stoneham

2020

Cancer

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Adolescent and young adult (AYA) oncology has recently emerged as a new medical discipline with a focus on the needs and challenges around AYA cancer care. Improvements in all-age cancer treatments over the last 40 years has led to a doubling in overall survival for AYA patients with cancer, and >80% are expected to survive beyond 5 years. 1 Over this period, the incidence of cancer in AYAs has increased, meaning that there will be ever more AYA cancer survivors with the potential of many decades of life still to live. 2 The challenge is how to maintain this excellent survival rate and ensure the subsequent quality of survival.However, cancer mortality remains the leading cause of disease-related death for AYAs in North America. 2 In this issue of Cancer, Armenian and colleagues describe the profoundly elevated risk of premature death in AYAs with cancer that continues for well beyond 20 years after diagnosis. 3 Theirs is not an isolated series, as their data echo findings from Anderson et al and European AYA survivorship publications. [4][5][6] For the majority of patients, primary cancer recurrence is the most common cause of mortality in the early years of surveillance. It is of concern that the gain in improvement of overall survival outcomes for AYA patients has been significantly lower than the gains for both older and younger groups of patients with cancer. 7 Alongside this, there is a paucity of evidence delineating the subsequent mortality and morbidity for AYA survivors with which to underpin the design of survivorship programs. Although AYA survivorship outcomes are published for Hodgkin disease, testicular cancer, and sarcoma, these diagnoses represent <50% of the spectrum of all AYA cancers diagnosed each year. Similarly, the quality of survival in an aftercare setting has not been well evaluated. There is much work to be done.

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A Narrative Review of Models of Care for Adolescents and Young Adults with Cancer: Barriers and Recommendations

Cited by 43 publications

References 44 publications

Communication during childhood cancer: Systematic review of patient perspectives

Communication during childhood cancer: Systematic review of patient perspectives

Models of care for adolescent and young adult cancer programs

AYA survivorship: The next challenge

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