Cancer care and well‐being in adolescents and young adults during the coronavirus disease 2019 pandemic: A UK sarcoma perspective

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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International note: Temperament and character's relationship to subjective well-being in Salvadorian adolescents and young adults

Journal of Adolescence ◽

10.1016/j.adolescence.2013.08.018 ◽

2013 ◽

Vol 36 (6) ◽

pp. 1115-1119 ◽

Cited By ~ 10

Author(s):

Danilo Garcia ◽

Ali A. Nima ◽

Trevor Archer

Keyword(s):

Young Adults ◽

Well Being ◽

Adolescents And Young Adults ◽

Subjective Well Being

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A Cross-Sectional Survey Exploring the Impact of the COVID-19 Pandemic on the Cancer Care of Adolescents and Young Adults

Current Oncology ◽

10.3390/curroncol28040278 ◽

2021 ◽

Vol 28 (4) ◽

pp. 3201-3213

Author(s):

Kaitlyn Howden ◽

Camille Glidden ◽

Razvan G. Romanescu ◽

Andrew Hatala ◽

Ian Scott ◽

...

Keyword(s):

Young Adults ◽

Cancer Treatment ◽

Cancer Care ◽

Negative Impact ◽

Positive Impact ◽

Care Delivery ◽

Adolescents And Young Adults ◽

P Value ◽

Cross Sectional Survey ◽

The Impact

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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Interventions available to adolescents and young adults bereaved by familial cancer: a systematic literature review

BMJ Supportive & Palliative Care ◽

10.1136/bmjspcare-2019-001959 ◽

2019 ◽

pp. bmjspcare-2019-001959 ◽

Cited By ~ 3

Author(s):

Veronica Ing ◽

Pandora Patterson ◽

Marianna Szabo ◽

Kimberley R Allison

Keyword(s):

Young Adults ◽

Young People ◽

Familial Cancer ◽

Well Being ◽

Adolescents And Young Adults ◽

Positive Effects ◽

Online Databases ◽

Self Reports ◽

And Coping ◽

Further Development

ObjectivesTo assess the availability and efficacy of interventions open to adolescents and young adults (AYAs; 15-25 years) bereaved by a parent’s or sibling’s cancer.MethodsA systematic review of peer-reviewed literature on interventions available to AYAs bereaved by a parent’s or sibling’s cancer was conducted through searches of six online databases (PsycINFO, Medline, Scopus, Embase, SWAB and Web of Science Core Collection).ResultsDatabase and reference searches yielded 2985 articles, 40 of which were included in the review. Twenty-two interventions were identified that were available for bereaved young people. However, only three were specific to young people bereaved by familial cancer, and none were specific to AYAs. Interventions primarily provided opportunities for participants to have fun, share their experiences and/or memorialise the deceased; psychoeducation about bereavement, grief and coping was less common. Only six interventions had been satisfactorily evaluated, and no intervention targeted or analysed data for AYAs separately. Overall, some evidence suggested that interventions (especially those that were theoretically grounded) had positive effects for bereaved young people. However, benefits were inconsistently evidenced in participants’ self-reports and often only applied to subgroups of participants (eg, older youths and those with better psychological well-being at baseline).ConclusionsConsidering the very limited number of interventions specific to bereavement by familial cancer and the lack of interventions targeting AYAs specifically, it is unclear whether currently available interventions would benefit this population. The population of AYAs bereaved by familial cancer is clearly under-serviced; further development and evaluation of interventions is needed.

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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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Worldwide benefits of improving cancer care for adolescents and young adults in LMICs

The Lancet Oncology ◽

10.1016/s1470-2045(20)30101-7 ◽

2020 ◽

Vol 21 (4) ◽

pp. 487-489

Author(s):

Michael P Osborn ◽

Rebecca H Johnson

Keyword(s):

Young Adults ◽

Cancer Care ◽

Adolescents And Young Adults

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Development of the Self-Rated Abilities for Health Practices–Adolescent Version: A Self-Efficacy Measure

Journal of Nursing Measurement ◽

10.1891/1061-3749.26.1.134 ◽

2018 ◽

Vol 26 (1) ◽

pp. 134-141

Author(s):

Jenifer M. Chilton ◽

Kevin P. Gosselin ◽

Barbara K. Haas

Keyword(s):

Young Adults ◽

Extraction Method ◽

Psychometric Testing ◽

Well Being ◽

Adolescent Females ◽

The Self ◽

Adolescents And Young Adults ◽

Health Practices ◽

Reliable Measure ◽

Efficacy Measure

Background and Purpose:An instrument to measure wellness behaviors in adolescent females did not appear in the literature. The purpose of this article is to describe the development and evaluation of the Self-Rated Abilities for Health and Practices Scale–Adolescent Version (SRAHP-A).Methods:Initial psychometric testing was conducted with a sample of 265 adolescents and young adults aged 13–24 years. Data collection occurred through paper and pencil surveys.Results:Exploratory factor analysis using maximum likelihood factor extraction method and oblique ration was conducted. A four-factor structure consisting of Exercise, Nutrition, Health Practices, and Well-Being emerged.Conclusions:Initial psychometric testing suggested that it is a valid and reliable measure of wellness behaviors in adolescent females. Further testing is necessary; however, it appears this instrument has the potential to move wellness care for adolescents and young adults forward.

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The benefits and burdens of cancer: A prospective, longitudinal cohort study of adolescents and young adults.

Journal of Clinical Oncology ◽

10.1200/jco.2016.34.26_suppl.243 ◽

2016 ◽

Vol 34 (26_suppl) ◽

pp. 243-243

Author(s):

Joelle P. Straehla ◽

Krysta Shutske ◽

Joyce P. Yi-Frazier ◽

Claire M Wharton ◽

Kevin Scott Baker ◽

...

Keyword(s):

Young Adults ◽

Cancer Diagnosis ◽

Sense Of Self ◽

Well Being ◽

Adolescents And Young Adults ◽

Personal Strengths ◽

Patient Reported ◽

After Cancer ◽

Prospective Longitudinal ◽

Time Point

243 Background: Much of the literature describing psychosocial consequences of cancer among adolescents and young adults (AYAs) has reported negative outcomes; however, AYAs also have potential for protective, positive outcomes. We aimed to prospectively characterize AYA patient-reported benefit and burden-finding after cancer diagnosis and hypothesized that benefit finding would be a salient coping mechanism. Methods: Semi-structured, 1:1 interviews were conducted with AYA patients after cancer diagnosis at 3 time points over 2 years, to elicit their expectations, hopes, worries, personal strengths, and challenges. A priori coding themes were defined from validated scales: changed sense of self, relationships, philosophy of life, and physical well-being. Verbatim transcripts were coded using content analyses by 3 independent coders for instances of benefit or burden by construct. Raw counts, ratios, and confidence intervals were calculated and compared by patient and time point. Results: Seventeen patients (mean age 17.1 ± 2.7; 8 [47%] male) completed 44 interviews with > 100 hours of transcript-data. Most common diagnoses were sarcoma (n = 8), acute leukemia (n = 6), and lymphoma (n = 3). Twelve patients completed all 3 interviews; reasons for withdrawal included death in all but 2 cases. Mean (±SD) counts of patient-reported benefit were higher than burden at each time point (T1, T2, T3); the benefit: burden ratio was > 1 in 68% of interviews (Table). Of the themes, changed sense of self was the most common benefit identified (44% of all reported benefits [95% CI 37%, 52%]) whereas physical complaints was the most common burden (32% [95% CI 25%, 39%]). Longitudinal analysis of subthemes among patients completing 3 interviews (N = 12) indicated an increase in self-identified positive and negative impact of cancer on personal, social and existential perspectives. Conclusions: AYA patients with cancer identified more benefits than burdens related to their diagnoses at all times studied. There was a shift over time in the distribution of benefit and burden finding constructs which may highlight areas for potential intervention. [Table: see text]

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Preprint Father absence and academic engagement Osinga et al.

10.31234/osf.io/8zcgu ◽

2021 ◽

Author(s):

Mariëlle Osinga ◽

Maaike C. Engels ◽

Odette van Brummen- Girigori ◽

Tina Kretschmer

Keyword(s):

Young Adults ◽

Academic Engagement ◽

Well Being ◽

Father Absence ◽

Demographic Characteristics ◽

Cross Cultural ◽

Adolescents And Young Adults ◽

Cultural Perspectives ◽

Family Form

The literature on father absence is criticized for its lack of cross-cultural perspectives and failure to take into account potential mechanisms that are related to associations between father absence and offspring well-being and development. In the present study, we investigated whether father absence was linked to Curaçaoan (n = 564) and Dutch (n = 652) adolescents’ and young adults’ behavioral and emotional (dis)engagement in school. Whereas father absence has often been linked to problems in offspring adjustment, we did not find an association between father absence and offspring academic engagement. It is important to continue studying father absence across demographic characteristics and measures to advance understanding of whether, when, and how this family form might affect offspring well-being and development.

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