The impact of COVID‐19 on the cancer care of adolescents and young adults and their well‐being: Results from an online survey conducted in the early stages of the pandemic

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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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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Drug Recovery and Copay Assistance Program in a Community Cancer Center: Charity and Challenges

Journal of Oncology Practice ◽

10.1200/jop.19.00016 ◽

2019 ◽

Vol 15 (7) ◽

pp. e628-e635 ◽

Cited By ~ 1

Author(s):

Robert D. Siegel ◽

Richard G. Slough ◽

Howland E. Crosswell ◽

Theresa M. Standifer ◽

Michael E. Borron ◽

...

Keyword(s):

Young Adults ◽

Cancer Care ◽

Financial Burden ◽

Cost Savings ◽

Adolescents And Young Adults ◽

Cancer Center ◽

Care Providers ◽

Assistance Program ◽

The Cost ◽

The Impact

PURPOSE: The cost of cancer care is escalating dramatically, in part because of the rising expense of systemic cancer therapy. This creates financial dilemmas for patients and insurers and potential economic disruption for institutions attempting to provide cancer care to the underserved. Our institution initiated a drug recovery and copay assistance program (DRCAP) to mitigate the impact of the rising cost of parenteral medications. METHODS: We performed a 3-year review of our strategies to mitigate financial burden of parenteral therapeutics and supportive care medicines. Financial metrics were established and analyzed before and after implementing DRCAP. Medication encounters and associated costs were stratified by adolescents and young adults (15 to 39 years of age), and adults 40 years of age and older and were annualized from 2016 to 2018. RESULTS: The DRCAP resulted in a total of nearly $3.5 million worth of drugs replaced or copay assistance yearly in 2017 and 2018. This accounted for approximately 10% of our pharmacy budget for parenteral medications in each of these years. The vast majority was received in the form of drug replacement. The DRCAP resulted in assistance to 173 and 256 patients in 2017 and 2018, respectively. CONCLUSION: A DRCAP increased availability of otherwise unaffordable parenteral oncolytics and resulted in cost savings for our institution. Adolescents and young adults were disproportionately represented because of inadequate or no insurance. Despite the salutary benefits, such programs likely inflate the overall cost of cancer care. Cancer care providers participating in a DRCAP will remain in this conundrum until market forces can affect the cost of oncology therapeutics.

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The Impact of Tuberculosis on the Well-Being of Adolescents and Young Adults

Pathogens ◽

10.3390/pathogens10121591 ◽

2021 ◽

Vol 10 (12) ◽

pp. 1591

Author(s):

Patricia Moscibrodzki ◽

Leslie A. Enane ◽

Graeme Hoddinott ◽

Meredith B. Brooks ◽

Virginia Byron ◽

...

Keyword(s):

Older Adults ◽

Young Adults ◽

Social Development ◽

Well Being ◽

Good Health ◽

Health Needs ◽

Adolescents And Young Adults ◽

Supportive Environment ◽

Learning Competence ◽

The Impact

The health needs of adolescents and young adults (AYAs) have been neglected in tuberculosis (TB) care, control, and research. AYAs, who are distinct from younger children and older adults, undergo dynamic physical, psychological, emotional, cognitive, and social development. Five domains of adolescent well-being are crucial to a successful transition between childhood and adulthood: (1) Good health; (2) connectedness and contribution to society; (3) safety and a supportive environment; (4) learning, competence, education, skills, and employability; and (5) agency and resilience. This review summarizes the evidence of the impact of TB disease and treatment on these five domains of AYA well-being.

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

Cancer ◽

10.1002/cncr.33215 ◽

2020 ◽

Vol 126 (24) ◽

pp. 5359-5360

Author(s):

Emma K. Lidington ◽

Alannah Smrke ◽

Katrina M. Ingley ◽

Sandra J. Strauss ◽

Olga Husson ◽

...

Keyword(s):

Young Adults ◽

Cancer Care ◽

Well Being ◽

Adolescents And Young Adults

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Young adults’ coping strategies against loneliness during the COVID-19-related quarantine in Greece

Health Promotion International ◽

10.1093/heapro/daab053 ◽

2021 ◽

Author(s):

Adrianos Golemis ◽

Panteleimon Voitsidis ◽

Eleni Parlapani ◽

Vasiliki A Nikopoulou ◽

Virginia Tsipropoulou ◽

...

Keyword(s):

Social Media ◽

Young Adults ◽

Social Responsibility ◽

Coping Strategies ◽

Online Survey ◽

Adult Population ◽

Psychological Impact ◽

Well Being ◽

Daily Routine ◽

Cross Sectional

Summary COVID-19 and the related quarantine disrupted young adults’ academic and professional life, daily routine and socio-emotional well-being. This cross-sectional study focused on the emotional and behavioural responses of a young adult population during the COVID-19-related quarantine in April 2020, in Greece. The study was conducted through an online survey. A total of 1559 young adults, aged 18−30 years, completed Steele’s Social Responsibility Motivation Scale and the De Jong Gierveld Loneliness Scale, and answered questions about compliance with instructions, quarantine-related behaviours and coping strategies. According to the results, participants displayed a relatively high sense of social responsibility (M = 16.09, SD = 2.13) and a trend towards moderate feeling of loneliness (M = 2.65, SD = 1.62); young women reported significantly higher levels of loneliness than men. The majority complied with instructions often (46.4%) or always (44.8%). Significantly more women created a new social media account and used the social media longer than 5 h/day, compared with men. Resorting to religion, practicing sports and sharing thoughts and feelings about COVID-19 with others predicted higher levels of social responsibility; humour, practicing sports and sharing thoughts and feelings about COVID-19 with others predicted lower levels of loneliness. Conclusively, COVID-19 is expected to have a significant psychological impact on young adults. Currently, Greece is going through the second quarantine period. This study raises awareness about loneliness in young adults during the COVID-19-related quarantine and highlights the importance of developing online programmes, attractive to younger people, to nurture adaptive coping strategies against loneliness.

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The Impact of the COVID-19 Pandemic on the Working Conditions, Employment, Career Development and Well-Being of Refugee Researchers

Societies ◽

10.3390/soc11030071 ◽

2021 ◽

Vol 11 (3) ◽

pp. 71

Author(s):

Ourania Tzoraki ◽

Svetlana Dimitrova ◽

Marin Barzakov ◽

Saad Yaseen ◽

Vasilis Gavalas ◽

...

Keyword(s):

Online Survey ◽

Negative Impact ◽

Well Being ◽

Appropriate Technology ◽

Public Authorities ◽

Policy Makers ◽

Home Setting ◽

The Public ◽

Work From Home ◽

The Impact

The ongoing ‘refugee crisis’ of the past years has led to the migration of refugee researchers (RRs) to European countries. Due to the COVID-19 pandemic, RRs often had to work from home and/or to continue their social, cultural and economic integration process under new conditions. An online survey carried out to explore the impact of the pandemic on the refugee researchers showed that RRs found it difficult to adapt their everyday working life to the ‘home’ setting. The majority have had neither a suitable work environment at home nor the appropriate technology. Although they stated that they are rather pleased with the measures taken by the public authorities, they expressed concern about their vulnerability due to their precarious contracts and the bureaucratic asylum procedures, as the pandemic has had a negative impact on these major issues. The majority of RRs working in academia seem not to have been affected at all as far as their income is concerned, while the majority of those employed in other sectors became unemployed during the pandemic (58%). Recommendations are provided to the public authorities and policy makers to assist RRs to mitigate the consequences of the pandemic on their life.

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Determinants of participation and quality of life of young adults with cerebral palsy: longitudinal approach and comparison with the general population – SPARCLE 3 study protocol

BMC Neurology ◽

10.1186/s12883-021-02263-z ◽

2021 ◽

Vol 21 (1) ◽

Author(s):

Catherine Arnaud ◽

Carine Duffaut ◽

Jérôme Fauconnier ◽

Silke Schmidt ◽

Kate Himmelmann ◽

...

Keyword(s):

Quality Of Life ◽

Young Adults ◽

Cerebral Palsy ◽

Young People ◽

General Population ◽

Transition Period ◽

Well Being ◽

Personal Factors ◽

The Impact

Abstract Background Effective inclusion in society for young people with disabilities is increasingly seen as generating opportunities for self-development, and improving well-being. However, significant barriers remain in the vast majority of activities meaningful for young adults. Research argues that various personal (disabilities, health) and environmental (access to the resources needed, accessible environment, discrimination, lack of personal economic independence) factors contribute to limited participation. However, previous studies conducted in young people with cerebral palsy (CP) mainly investigated the transition period to adulthood, and did not fully consider the whole range of impairment severity profiles or environmental barriers. In this study, we will use the follow-up of the SPARCLE cohort and a comparison group from the general population (1) to investigate the impact of the environment on participation and quality of life of young adults with CP, (2) to determine predictors of a successful young adulthood in educational, professional, health and social fields, (3) to compare quality of life and frequency of participation in social, work and recreational activities with the general population, (4) to document on participation and quality of life in those with severe disabilities. Methods The SPARCLE3 study has a combined longitudinal and cross-sectional design. Young adults with CP aged 22 to 27 years in 6 European regions previously enrolled in the SPARCLE cohort or newly recruited will be invited to self-complete a comprehensive set of questionnaires exploring participation (daily life and discretionary activities), health-related quality of life, body function, personal factors (health, personal resources), and contextual factors (availability of needed environmental items, family environment, services provision) during home visits supervised by trained researchers. Proxy-reports or adapted questionnaires will be used for those with the most severe impairments. The recruitment of a large group from the general population (online survey) will enable to identify life areas where the discrepancies between young people with CP and their able-bodied peers are the most significant. Discussion This study will help identify to what extent disabilities and barriers in environment negatively affect participation and quality of life, and how previous valued experiences during childhood or adolescence might modulate these effects.

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Generalized Joint Hypermobility and Anxiety in Adolescents and Young Adults, the Impact on Physical and Psychosocial Functioning

Healthcare ◽

10.3390/healthcare9050525 ◽

2021 ◽

Vol 9 (5) ◽

pp. 525

Author(s):

Janneke de Vries ◽

Jeanine Verbunt ◽

Janine Stubbe ◽

Bart Visser ◽

Stephan Ramaekers ◽

...

Keyword(s):

Young Adults ◽

Psychosocial Functioning ◽

Negative Impact ◽

Pain Catastrophizing ◽

Joint Hypermobility ◽

Adolescents And Young Adults ◽

P Value ◽

High Performing ◽

Generalized Joint Hypermobility ◽

The Impact

The purpose of this study was to study the association between the presence of generalized joint hypermobility (GJH) and anxiety within a non-clinical high performing group of adolescents and young adults. Second, to study the impact of GJH and/or anxiety on physical and psychosocial functioning, 168 adolescents and young adults (mean (SD) age 20 (2.9)) were screened. Joint (hyper)mobility, anxiety, and physical and psychosocial functioning were measured. In 48.8% of all high performing adolescents and young adults, GJH was present, whereas 60% had symptoms of anxiety. Linear models controlled for confounders showed that adolescents and young adults with GJH and anxiety had decreased workload (ß (95%CI) −0.43 (−0.8 to −0.08), p-value 0.02), increased fatigue (ß (95%CI) 12.97 (6.3–19.5), p-value < 0.01), and a higher level of pain catastrophizing (ß (95%CI) 4.5 (0.5–8.6), p-value 0.03). Adolescents and young adults with only anxiety had increased fatigue (ß (95%CI) 11 (4.9–19.5). In adolescents and young adults with GJH alone, no impact on physical and psychosocial functioning was found. Adolescents and young adults with the combination of GJH and anxiety were significantly more impaired, showing decreased physical and psychosocial functioning with decreased workload, increased fatigue, and pain catastrophizing. Presence of GJH alone had no negative impact on physical and psychosocial functioning. This study confirms the association between GJH and anxiety, but especially emphasizes the disabling role of anxiety. Screening for anxiety is relevant in adolescents and young adults with GJH and might influence tailored interventions.

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Psychological distress during COVID-19 pandemic in low-income and middle-income countries: a cross-sectional study of older persons in Thailand

BMJ Open ◽

10.1136/bmjopen-2020-047650 ◽

2021 ◽

Vol 11 (4) ◽

pp. e047650

Author(s):

Wiraporn Pothisiri ◽

Paolo Miguel Manalang Vicerra

Keyword(s):

Psychological Distress ◽

Low Income ◽

Older Persons ◽

Online Survey ◽

Well Being ◽

Secondary Outcome ◽

Ageing Society ◽

Psychological Well Being ◽

Middle Income ◽

The Impact

ObjectiveThe COVID-19 situation in Thailand was controlled with various social measures. Much of the information covered in the media and in studies focused on the public health and economic aspects of the pandemic. This study aimed to explore the psychological well-being of older people, which is important especially in an ageing society categorised as low income or middle income due to the limits of economic and healthcare resources.SettingThe impact of COVID-19 on older persons in Thailand, an online survey, taken across nine provinces within the five regions of the country.ParticipantsInformation was collected from 1230 adults aged at least 60 years old.If an older person was illiterate, unable to access the internet or had a disability preventing them from responding to the survey, an intermediary residing in the community conducted the survey interview.Primary and secondary outcome measuresThe analysis focused on the worries of older adults and the factors associated with psychological distress experienced during the pandemic using logistic regression analysis.ResultsThe majority of people aged at least 60 years old experienced psychological distress during COVID-19. Employment loss (OR 1.08, 95% CI 0.78 to 1.38), inadequate income (OR 1.77, 95% CI 1.28 to 2.44) and debt incursion (OR 2.74, 95% CI 1.57 to 4.80) were detrimental to psychological well-being. The negative changes in the perception of their health status (OR 1.92, 95% CI 1.23 to 2.99) and decreased life satisfaction (OR 1.49, 95% CI 0.45 to 1.87) also weighed on older Thais. The protective factors for psychological well-being were residing in rural areas (OR 0.46, 95% CI 0.35 to 0.61) and being married (OR 0.75, 95% CI 0.55 to 1.01).ConclusionObserving the concerns of the older population is important for introducing policies that can alleviate their precarious financial and health statuses.

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