Is there scope to do better? Clinical communication with adolescents and young adults with cancer-A scoping review.

INTRODUCTION: How to communicate effectively with adolescent and young adults with cancer (AYACs) is a research priority. In a UK-wide survey of young people with cancer's research priorities, communication was a striking cross-cutting theme. It is increasingly recognised that AYACs have experiences and communication needs that differ significantly from those of younger children and older adults. The purpose of this review is to explore the features of effective clinical communication with AYACs. METHODS: A literature search was undertaken to identify and map the available evidence using a broad scope to get an overview of the pertinent literature, identify knowledge gaps and clarify concepts. The searches yielded 5825 records, generating 4040 unique articles. These were screened and 71 full articles were read by four researchers with disagreements resolved by discussion leaving 29 included articles. Narrative synthesis was undertaken in relation to each of the research questions. RESULTS: Three key themes were identified: being an adolescent/young adult, supporters, and healthcare professionals (HCPs). AYACs need to feel that HCPs understand their unique perspective. They want to be involved, this changes over time and in different contexts. Supporters are a central tenet, are most often parents and undertake several roles which are not always universally supportive. HCPs enable involvement of AYACs, and this needs to be actively promoted. AYACs preference for their level of involvement requires continual assessment. The three themes are interlinked and exist within the wider scope of the triadic encounter and cancer experience. CONCLUSION: Supporters, most often parents were a key feature across the data and were seemingly paradoxical in nature. Triadic communication, the presence of a third person, is a central tenet of communication with AYACs and we propose a conceptual model to represent the nuances, components, and facets of this complex communication.

Triadic communication with teenagers and young adults with cancer: a systematic literature review - 'make me feel like I'm not the third person'.

OBJECTIVES: Clinical communication needs of teenagers and young adults with cancer (TYACs) are increasingly recognised to differ significantly from younger children and older adults. We sought to understand who is present with TYACs, TYACs' experiences of triadic communication and its impact. We generated three research questions to focus this review: (1) Who is present with TYACs in healthcare consultations/communication?, (2) What are TYACs' experiences of communication with the supporter present? and (3) What is the impact of a TYAC's supporter being present in the communication? DESIGN: Systematic review with narrative synthesis. DATA SOURCES: The search was conducted across six databases: Medline, CINAHL, Embase, PsycINFO, Web of Science and AMED for all publications up to December 2023. ELIGIBILITY CRITERIA FOR SELECTING STUDIES: Included papers were empirical research published after 2005; participants had malignant disease, diagnosed aged 13-24 years (for over 50% of participants); the research addressed any area of clinical communication. DATA EXTRACTION AND SYNTHESIS: Three independent reviewers undertook full-text screening. A review-specific data extraction form was used to record participant characteristics and methods from each included paper and results relevant to the three review questions. RESULTS: A total of 8480 studies were identified in the search, of which 36 fulfilled the inclusion criteria. We found that mothers were the most common supporter present in clinical communication encounters. TYACs' experiences of triadic communication are paradoxical in nature-the supporter can help or hinder the involvement of the young person in care-related communication. Overall, young people are not included in clinical communication and decisions at their preferred level. CONCLUSION: Triadic communication in TYACs' care is common, complex and dynamic. Due to the degree of challenge and nuances raised, healthcare professionals need further training on effective triadic communication. PROSPERO REGISTRATION NUMBER: CRD42022374528.

Documentation of Oncofertility Communication in Adolescents and Young Adults with Cancer: A Retrospective Analysis.

Background: Increasing numbers of adolescents and young adults with cancer (AYACs) are surviving long term, highlighting the importance of effective oncofertility communication. We undertook this study to understand documentation of fertility discussions with AYACs, what options are offered, and how this differs for AYACs on treatment compared with those post-treatment. Methods: We reviewed the documentation of fertility discussions with 122 AYACs treated between 2000 and 2020: 72 AYACs on treatment and 50 AYACs at least 3 years post-treatment ("late effects" cohort). Results: Diagnoses were split evenly between hematological and solid tumor diagnoses, and biological sex. Seventy-five percent of patients were diagnosed and treated by the AYAC team and 25% by the pediatric team. Median age at diagnosis was 19 years (range 4-24) for on-treatment patients and 16 years (range 3-25) for late effects patients. Fertility was discussed with 93% of on-treatment patients and 48% of late effects patients. Seventy-nine percent of on-treatment patients and 48% of late effects patients pursued a pre-treatment fertility preservation option. Post-treatment, 84% of late effects patients had a discussion and 57% pursued an option. Only four patients across both cohorts underwent oocyte or ovarian tissue cryopreservation. Those referred to specialist reproductive medicine clinics had more detailed documentation about fertility discussions. Nurse-led late effects clinics had a key role in facilitating post-treatment discussions. Conclusions: It is important to communicate oncofertility options to AYACs repeatedly throughout treatment. Referral to specialist oncofertility services and adequate information for both sexes is important pre-treatment, and can be facilitated post-treatment by a late effects service.

Adolescent and Young Adult Cancer Placements: Developing Complex Clinical Communication Skills of Medical Students.

Purpose: Following implementation of a student selected module in adolescent and young adult cancer care for medical students, we sought to explore their experiences of the specialty. Methods: We undertook a focus group of five medical students all in their fourth to sixth year of study. Transcripts were transcribed verbatim and analyzed thematically. Results: We identified six key themes repeatedly elicited during the focus group; these were specialized and holistic care, patient's perspective, connectedness and professional boundaries, triadic communication, emotional impacts, and professional development and support. Conclusion: Early exposure to this specialty is positive for students and the model could be replicated elsewhere.

"A Different Person Entirely": Adolescent and Young Adults' Experiences Returning to Education after Cancer Treatment.

Purpose: Adolescent and young adults (AYAs) establish their independent, adult identities as part of their psychosocial development, a process that is largely informed by educational experiences. Not only is a cancer diagnosis disruptive to this process but also AYA cancer survivors (AYACs) face barriers as they attempt to reintegrate into educational systems. This study explores the experiences of AYACs as they return to education, to identify these obstacles and the implications for care teams. Methods: In-depth semistructured interviews were conducted with AYACs (n = 8), 16-19 years of age at diagnosis and 18-27 years of age at time of interview. Interviews were transcribed verbatim and analyzed using the principles of Giorgi's phenomenological analysis. Results: Four major themes were identified: AYACs suffer from debilitating late effects (theme 1) post-treatment as they adjust to a loss of normality and other fundamental losses (theme 2) associated with a cancer diagnosis, such as irrecoverable future plans. The educational systems (theme 3) to which they return can be both accommodating, capable of making allowances, and uncompromising, unable to adapt to AYAC survivors' needs. Appropriate mechanisms to facilitate resilience (theme 4) among AYACs are vital for successful return to education. Conclusion: This study supports previous findings that late effects and systemic barriers can hinder return to education, but further research focused on this age group is required. We believe that treating clinicians and specialist services can facilitate the return of AYACs to education by providing warning and comprehensive information about late effects, as early as possible before treatment completion, as well as effective information sharing with educational institutions.

How Can Health Care Professionals Communicate Effectively with Adolescent and Young Adults Who Have Completed Cancer Treatment? A Systematic Review.

Communication with teenage and young adult or adolescent and young adult (AYA) patients with cancer is critically important and not consistently taught in health care education. We have developed a local training for medical students to experience and join AYA cancer consultations to improve clinicians' abilities in the future. We have undertaken a systematic review of the literature, to provide a comprehensive overview of studies evaluating communication in this specific patient group, to guide clinical practice and future research. We searched MEDLINE, EMBASE, PsycINFO, Web of Science, and CINAHL databases for literature containing data relating to communication in AYAs previously treated for malignant disease. To ensure as comprehensive a review as possible, the researchers defined the AYA age range using the extremes used globally: 13-39 years. Two thousand eight hundred and thirty-seven articles were identified, which were reduced to 1517 after duplicates were removed. After handsearching references and citation tracking, 1556 abstracts were screened of which 40 full-text articles were assessed for eligibility. Only 12 met all inclusion criteria and were included in the final analysis. Young people want to be heard and have trust in their health care professionals (HCPs). They want to be involved in decisions about their care, and HCPs must establish who else the AYA wants to be involved in the decision-making process. AYAs want information to be given in an amount they can control and at a time preferred by them. Further education of communication skills, especially triadic communication, is essential for professionals involved in AYA care.