Improving Outcomes for Adolescents and Young Adults With Sarcoma: A Focus on Cancer Care Delivery

We aimed to describe the negative and positive impacts of changes in cancer care delivery due to COVID-19 pandemic for adolescents and young adults (AYAs) in Canada, as well as the correlates of negative impact and their perspectives on optimization of cancer care. We conducted an online, self-administered survey of AYAs with cancer living in Canada between January and February 2021. Multiple logistic regression was used to identify factors associated with a negative impact on cancer care. Of the 805 participants, 173 (21.5%) experienced a negative impact on their cancer care including delays in diagnostic tests (11.9%), cancer treatment (11.4%), and appointments (11.1%). A prior diagnosis of mental or chronic physical health condition, an annual income of <20,000 CAD, ongoing cancer treatment, and province of residence were independently associated with a negative cancer care impact (p-value < 0.05). The majority (n = 767, 95.2%) stated a positive impact of the changes to cancer care delivery, including the implementation of virtual healthcare visits (n = 601, 74.6%). Pandemic-related changes in cancer care delivery have unfavorably and favorably influenced AYAs with cancer. Interventions to support AYAs who are more vulnerable to the adverse effects of the pandemic, and the thoughtful integration of virtual care into cancer care delivery models is essential.

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Challenges for Cancer Care Delivery to Adolescents and Young Adults: Present and Future

Acta Haematologica ◽

10.1159/000360241 ◽

2014 ◽

Vol 132 (3-4) ◽

pp. 414-422 ◽

Cited By ~ 3

Author(s):

Mathew R. Meeneghan ◽

William A. Wood

Keyword(s):

Young Adults ◽

Cancer Care ◽

Care Delivery ◽

Adolescents And Young Adults

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The Australian Youth Cancer Service: Developing and Monitoring the Activity of Nationally Coordinated Adolescent and Young Adult Cancer Care

Cancers ◽

10.3390/cancers13112675 ◽

2021 ◽

Vol 13 (11) ◽

pp. 2675

Author(s):

Pandora Patterson ◽

Kimberley R. Allison ◽

Helen Bibby ◽

Kate Thompson ◽

Jeremy Lewin ◽

...

Keyword(s):

Clinical Trial ◽

Young Adults ◽

Cancer Care ◽

Young Patients ◽

Adolescents And Young Adults ◽

Adolescent And Young Adult ◽

Trial Participation ◽

Clinical Trial Participation ◽

Activity Data ◽

Cancer Services

Adolescents and young adults (aged 15–25 years) diagnosed with cancer have unique medical and psychosocial experiences and care needs, distinct from those of paediatric and older adult patients. Since 2011, the Australian Youth Cancer Services have provided developmentally appropriate, multidisciplinary and comprehensive care to these young patients, facilitated by national service coordination and activity data collection and monitoring. This paper reports on how the Youth Cancer Services have conceptualised and delivered quality youth cancer care in four priority areas: clinical trial participation, oncofertility, psychosocial care and survivorship. National activity data collected by the Youth Cancer Services between 2016–17 and 2019–20 are used to illustrate how service monitoring processes have facilitated improvements in coordination and accountability across multiple indicators of quality youth cancer care, including clinical trial participation, access to fertility information and preservation, psychosocial screening and care and the transition from active treatment to survivorship. Accounts of both service delivery and monitoring and evaluation processes within the Australian Youth Cancer Services provide an exemplar of how coordinated initiatives may be employed to deliver, monitor and improve quality cancer care for adolescents and young adults.

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Acceptability of HIV testing for adolescents and young adults by delivery model: a systematic review

Journal of Investigative Medicine ◽

10.1136/jim-2021-002056 ◽

2021 ◽

pp. jim-2021-002056

Author(s):

Peter Thomas Leistikow ◽

Vidhi Patel ◽

Christian Nouryan ◽

Joseph Steven Cervia

Keyword(s):

Young Adults ◽

North America ◽

Care Delivery ◽

Linkage To Care ◽

Adolescents And Young Adults ◽

Hiv Screening ◽

Model Of Care ◽

Delivery Model ◽

Care Delivery Model ◽

The World

HIV infections are prevalent among adolescents and young adults, of whom 44% remain unaware of their diagnosis. HIV screening presents numerous challenges including stigma, fear, and concerns about confidentiality, which may influence young people’s acceptance of HIV screening and linkage to care differently from individuals in other age groups. It is imperative to understand which care delivery models are most effective in facilitating these services for youth. This systematic review analyzes the rates of HIV test acceptance and linkage to care by care delivery model for adolescents and young adults. Studies were classified into emergency department (ED), primary care/inpatient setting, community-based program, or sexually transmitted infection clinic models of care. From 6395 studies initially identified, 59 met criteria for inclusion in the final analyses. Rate of test acceptance and linkage to care were stratified by model of care delivery, gender, race, age ranges (13–17, 18–24 years) as well as site (North America vs rest of the world). A significant difference in acceptance of HIV testing was found between care models, with high rates of test acceptance in the ED setting in North America and primary care/hospital setting in the rest of the world. Similarly, linkage to care differed by model of care, with EDs having high rates of linkages to HIV care in North America. Future studies are needed to test mechanisms for optimizing outcomes for each care delivery model in addressing the unique challenges faced by adolescents and young adults.

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Final Report of the FOPE II Pediatric Generalists of the Future Workgroup

PEDIATRICS ◽

10.1542/peds.106.se1.1199 ◽

2000 ◽

Vol 106 (Supplement_E1) ◽

pp. 1199-1223 ◽

Cited By ~ 7

Author(s):

Laurel Leslie ◽

Peter Rappo ◽

Herbert Abelson ◽

Renee R. Jenkins ◽

Sydney R. Sewall ◽

...

Keyword(s):

Young Adults ◽

21St Century ◽

Task Force ◽

Care Delivery ◽

Health Needs ◽

Adolescents And Young Adults ◽

Final Report ◽

Pediatric Practice ◽

Pediatric Education ◽

The Future

The Future of Pediatric Education II (FOPE II) Project was a 3-year, grant-funded initiative, which continued the work begun by the 1978 Task Force on the Future of Pediatric Education. Its primary goal was to proactively provide direction for pediatric education for the 21st century. To achieve this goal, 5 topic-specific workgroups were formed: 1) the Pediatric Generalists of the Future Workgroup, 2) the Pediatric Specialists of the Future Workgroup, 3) the Pediatric Workforce Workgroup, 4) the Financing of Pediatric Education Workgroup, and 5) the Education of the Pediatrician Workgroup. The FOPE II Final Report was recently published as a supplement toPediatrics (The Future of Pediatric Education II: organizing pediatric education to meet the needs of infants, children, adolescents, and young adults in the 21st century.Pediatrics. 2000;105(suppl):161–212). It is also available on the project web site at: www.aap.org/profed/fope1.htm This report reflects the deliberations and recommendations of the Pediatric Generalists of the Future Workgroup of the Task Force on FOPE II. The report looks at 5 factors that have led to changes in child health needs and pediatric practice over the last 2 decades. The report then presents a vision for the role and scope of the pediatrician of the future and the core attributes, skills, and competencies pediatricians caring for infants, children, adolescents, and young adults will need in the 21st century. Pediatrics 2000;106(suppl):1199–1223;pediatrics, medical education, children, adolescents, health care delivery.

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Care of adolescents and young adults with cancer in Asia: results of an ESMO/SIOPE/SIOP Asia survey

ESMO Open ◽

10.1136/esmoopen-2018-000467 ◽

2019 ◽

Vol 4 (3) ◽

pp. e000467 ◽

Cited By ~ 1

Author(s):

Chi Kong Li ◽

Rashmi Dalvi ◽

Kan Yonemori ◽

Hany Ariffin ◽

Chuhl Joo Lyu ◽

...

Keyword(s):

Young Adults ◽

European Society ◽

Cancer Care ◽

Online Survey ◽

Healthy Lifestyle ◽

Insurance Coverage ◽

Paediatric Oncology ◽

Adolescents And Young Adults ◽

Human Papillomavirus Vaccination ◽

Cancer Services

BackgroundAdolescents and young adults (AYAs) with cancer require dedicated management encompassing both adult and paediatric cancer services. Following a European survey, the European Society for Medical Oncology, the European Society for Paediatric Oncology and the Asian continental branch of International Society of Paediatric Oncology undertook a similar survey to assess AYA cancer care across Asia.MethodsA link to the online survey was sent to healthcare professionals (HCPs) in Asia interested in AYA cancer care. Questions covered the demographics and training of HCPs, their understanding of AYA definition, availability and access to specialised AYA services, the support and advice offered during and after treatment, and factors of treatment non-compliance.ResultsWe received 268 responses from 22 Asian countries. There was a striking variation in the definition of AYA (median lower age 15 years, median higher age 29 years). The majority of the respondents (78%) did not have access to specialised cancer services and 73% were not aware of any research initiatives for AYA. Over two-thirds (69%) had the option to refer their patients for psychological and/or nutritional support and most advised their patients on a healthy lifestyle. Even so, 46% did not ask about smokeless tobacco habits and only half referred smokers to a smoking cessation service. Furthermore, 29% did not promote human papillomavirus vaccination for girls and 17% did not promote hepatitis B virus vaccination for high-risk individuals. In terms of funding, 69% reported governmental insurance coverage, although 65% reported that patients self-paid, at least partially. Almost half (47%) reported treatment non-compliance or abandonment as an issue, attributed to financial and family problems (72%), loss of follow-up (74%) and seeking of alternative treatments (77%).ConclusionsLack of access to and suboptimal delivery of AYA-specialised cancer care services across Asia pose major challenges and require specific interventions.

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