A European Network for Teenagers and Young Adults with Cancer

Božović-Spasojević, Ivana; Balsat, Marie; Blondeel, Anne; Castleton, Anna; Munter, Johan De; Gamble, Ashley; Kienesberger, Anita; Konsoulova, Assia; Rizvi, Kulsoom Fatima; Schneider, Carole M.; Vermeersch, Joyce A.; Ferrari, Andrea; Stark, Dan

doi:10.1089/jayao.2021.0028

Cited by 5 publications

(7 citation statements)

References 23 publications

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“…More and more AYA care, and cancer care generally, is delivered by a network of providers and not just one healthcare organisation. 10 Almost half (49.3%) reported active collaboration with other hospitals for AYA cancer care, with many respondents (64.5%) collaborating with up to five hospitals and 22 (15.6%) collaborating with more than 10 hospitals to provide the complexity in treatment and care required for AYAs with cancer.…”

Section: Resultsmentioning

confidence: 99%

“…9 The European Network for Teenagers and Young Adults with Cancer (ENTYAC) was formed in 2016, and aims to bring together the adult and paediatric cancer treatment and care communities and to develop wide engagement, across haematology and oncology, supportive and palliative care, nursing, social work, wider clinical communities and patient organisations throughout Europe. 10…”

Section: Introductionmentioning

confidence: 99%

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Have we made progress in taking care of adolescents and young adults with cancer? Results of a European multi-professional survey

Spasojevic

Ferrari

Munter

et al. 2023

Tumori

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Background: It is well documented that traditional health care models do not meet the specific needs of Adolescents and Young Adults (AYA) cancer patients. Methods: We explore a map of the development of age-specific AYA cancer care across Europe, from the perspective of healthcare professionals with an interest in AYA care, in order to understand the specific challenges and map progress over time. An on-line survey was developed by international professional cancer organisations. Results: We had 377 respondents from 60 countries. The majority of respondents were physicians 298 (79%), a minority of survey respondents (39, 10.4%) work exclusively with AYA patients, most respondents declared substantial and routine clinical service collaborations to provide care and treatment to AYA with cancer. Policy for the multidisciplinary management of AYA cancer patients commonly appears in Europe now, and was reported by 234 (78.52%) respondents. Specific professional training for AYA cancer care is not uniformly available. Conclusion: There is considerable opportunity for many organisations to work together in raising the profile of AYA cancer related issues, in providing education and in encouraging research and collaboration.

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Section: Resultsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Have we made progress in taking care of adolescents and young adults with cancer? Results of a European multi-professional survey

Spasojevic

Ferrari

Munter

et al. 2023

Tumori

Self Cite

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“…Increasing access to clinical trials—for instance, by breaking the age 18 years dogmatic inclusion criteria of many studies and further promoting the development of innovative therapies—is a crucial step toward tackling under-representation. 20 - 23 The limited number of clinical trials for this age group, especially in LMICs, is another barrier to be overcome.…”

Section: Discussionmentioning

confidence: 99%

Challenging Outlook of Caring for Adolescents and Young Adults With Cancer in Brazil: Results of a Nationwide Survey

Kazzi,

Diniz,

Mano

et al. 2023

JCO Global Oncology

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PURPOSE The global burden of cancer in adolescents and young adults (AYAs) emerges as a major public health issue, in which remarkable challenges and unmet needs are evident. Because of sociodemographic inequalities, initiatives to change this scenario need to be expanded globally, particularly to low-middle–income countries (LMICs). This study aimed to gain information about the standards of AYA cancer care in Brazil from the physician's perspective. METHODS Physicians involved in AYA cancer care were invited to answer a national online survey. The questions covered several aspects from health care's demographics to specialized services availability, such as fertility and genetic counseling. The availability of a specialized AYA cancer care facility was the primary study end point, and the findings were stratified by region and treatment setting (public v private). RESULTS Among the physicians who responded (N = 249), 90% reported no access to a specialized AYA service. Only 20% had access to a fertility specialist, and 30% to a survivorship program in their institutions. Even external referrals to medical specialties were challenging, with 24% of the physicians reporting challenges. Despite the potential cardiotoxicity related to treatments, 43% of the respondents reported to refer patients for cardio-oncologists hardly ever. Furthermore, 36% of physicians had never enrolled AYA patients into clinical trials and 42% had never ordered a genetic test. Lack of specialized human resources was particularly evident in Northern Brazil, and delays in cancer diagnoses were frequent. CONCLUSION This first study addresses standards of AYA cancer care across Brazil. Importantly, the data disclose significant infrastructural gaps, implying that major investments in training and infrastructure are urgently needed. These data may mirror other LMICs reality.

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“…In the context of AYA oncology, the types of digital social platforms that are often mentioned and discussed include social media, online forums, and networks, which are believed to help researchers and healthcare professionals foster an environment for patient-centered care (Ben-Aharon et al, 2020;Bozovic-Spasojevic et al, 2021;Gorman et al, 2014;Perales et al, 2016). Since AYA patients are more prone to engage in digital networks and communication than other groups of cancer patients, Internet-based platforms have become a staple in the AYA ecosystem (Ben-Aharon et al, 2020).…”

Section: Literature Reviewmentioning

confidence: 99%

The use of digital social platforms in enhancing the engagement of AYA cancer patients in research: opportunities, challenges, and ethical concerns

Bui

2023

Health New Media Res

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This paper examines the use of digital social platforms to enhance the engagement of adolescent and young adult (AYA) cancer patients in research. Among AYAs, digital social networks have emerged as valuable resources for connection, information exchange, and emotional support. Patient engagement, encompassing participation and empowerment, is a critical aspect of AYA oncological research, yet there is a lack of scholarship dissecting the manifestation of these concepts in relation to digital social platforms. This study aims to bridge this gap by employing the frameworks of participatory culture and data ethics to analyze the impact of digital social platforms on patient engagement in research. Semi-structured qualitative interviews were conducted with eight experts from AYA patient organizations to gather insights on this topic. The findings reveal the potential of digital social platforms in fostering peer support, improving patient awareness and collaboration, increasing research enrollment, and diversifying data collection with user-generated content. However, challenges related to communication, privacy, and ethical considerations such as diversity and inclusion were also identified. The study contributes to the understanding of patient engagement among AYA cancer patients in the digital age and the development of effective strategies to encourage and highlight the voices of this patient population.

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A European Network for Teenagers and Young Adults with Cancer

Cited by 5 publications

References 23 publications

Have we made progress in taking care of adolescents and young adults with cancer? Results of a European multi-professional survey

Have we made progress in taking care of adolescents and young adults with cancer? Results of a European multi-professional survey

Challenging Outlook of Caring for Adolescents and Young Adults With Cancer in Brazil: Results of a Nationwide Survey

The use of digital social platforms in enhancing the engagement of AYA cancer patients in research: opportunities, challenges, and ethical concerns

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