Discussing Sexual Health with Adolescent and Young Adults with Cancer: a Qualitative Study Among Healthcare Providers.

Sexual health is an important aspect of quality-of-life for adolescent and young adult (AYA) patients with cancer. AYAs report a need for information about sexual health but experience a lack of communication with their healthcare provider. It is known that sexual health is a difficult theme for healthcare providers to discuss. This study aims to gain insight into perspectives of healthcare providers in facilitating AYAs' needs regarding sexual health. A qualitative study was performed. Six doctors and eight nurses from eight Dutch hospitals, specialized in AYA care, participated in semi-structured interviews. All interviews were audio-recorded, transcribed, and analyzed using a thematic analysis approach. Interviews with the healthcare providers revealed five themes concerning the discussion of sexual health: (1) being responsible for bringing up the topic of sexual health, (2) finding optimal timing to discuss sexual health, (3) acquiring knowledge to enable discussion of sexual health, (4) facilitating communication about sexual health, and (5) providing informative material for AYAs. To facilitate discussing sexual health, clear defined responsibilities within the team and sufficient knowledge are important. Self-report questionnaires, material to hand out, a checklist for healthcare providers, and knowledge of different communication strategies are helpful when discussing sexual health. By applying such means, communication with AYAs might be improved.

Prevalence and correlates of high fear of cancer recurrence in late adolescents and young adults consulting a specialist adolescent and young adult (AYA) cancer service.

OBJECTIVE: High fear of cancer recurrence (FCR) is a frequently reported problem among cancer patients. Previous research has shown that younger age is associated with higher levels of FCR. However, little attention has been given to date about how FCR manifests itself among adolescent and young adult (AYA) cancer patients. This study explores the prevalence, correlates of high FCR, and its association with HRQoL in cancer patients in their late adolescence or young adulthood. METHODS: Seventy-three AYA cancer patients, aged 18-35 years at diagnosis, consulted the AYA team of the Radboud University Medical Center completed questionnaires including the Cancer Worry Scale (CWS), Quality of Life-Cancer Survivors (QOL-CS), and Hospital Anxiety and Depression Scale (HADS). Sociodemographic and medical data was collected by self-reported questionnaire. RESULTS: Forty-five participants experienced high FCR (62%), which was higher than the 31-52% reported in previous studies among mixed adult cancer patient samples. Sociodemographic and medical variables were not associated with levels of FCR. High FCR was significantly associated with lower levels of social and psychological functioning and overall HRQoL and higher levels of anxiety and psychological distress. CONCLUSION: Results illustrate that FCR is a significant problem among AYA cancer patients consulting an AYA team, with participants reporting higher levels of FCR than cancer patients of mixed ages. Health care providers should pay specific attention to this problem by screening and the provision of appropriate psychosocial care when needed.

Empowerment in adolescents and young adults with cancer: Relationship with health-related quality of life.

BACKGROUND: The difficulties adolescents and young adults (AYAs) encounter during a cancer experience may result in a reduction in or absence of empowerment. The aims of the current study were to assess levels of empowerment and associated (demographic, clinical, or psychological) factors and examine the association between empowerment and health-related quality of life (HRQOL) among AYA patients with cancer. METHODS: Patients aged 18 to 35 years at time of cancer diagnosis and who were seen by 1 of the members of the specialized multidisciplinary AYA team of the Radboud University Medical Center were invited to complete questionnaires regarding empowerment; HRQOL; and sociodemographic, clinical, and psychological characteristics (autonomy, coping, unmet social support needs, and psychological distress). RESULTS: A total of 83 AYA patients completed the questionnaires. The mean age of the participants at the time of diagnosis was 27.5 years. The vast majority had been treated with chemotherapy (86%), had a more advanced stage of disease, and had completed treatment at the time of participation (74%). The mean empowerment level was 154.1 (standard deviation, 17.8) with a range of 114 to 200. Multivariate analysis demonstrated that the autonomy subscales of self-awareness (ß = .35), capacity for managing new situations (ß = .19), and social support (ß = .35) were found to be positively associated with empowerment. Coping difficulties (ß = -.19) were found to be negatively associated with empowerment. Empowerment was independently associated with physical (ß = .31), psychological (ß = .50), social (ß = .39), religious (ß = .33), and total HRQOL (ß = .52; all P<.01). CONCLUSIONS: Low levels of empowerment were associated with low levels of autonomy and social support, female sex, and coping difficulties among AYA patients with cancer. Recognizing these patients as candidates for empowerment interventions ultimately could help to improve HRQOL in late adolescence and young adulthood. Cancer 2017;123:4039-47. © 2017 The Authors. Cancer published by Wiley Periodicals, Inc. on behalf of American Cancer Society. This is an open access article under the terms of the Creative Commons Attribution-NonCommercial License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes.

Prevalence and impact of severe fatigue in adolescent and young adult cancer patients in comparison with population-based controls.

PURPOSE: The current study determined the prevalence of severe fatigue in adolescent and young adult (AYA) cancer patients (aged 18-35 years at diagnosis) consulting a multidisciplinary AYA team in comparison with gender- and age-matched population-based controls. In addition, impact of severe fatigue on quality of life and correlates of fatigue severity were examined. METHODS: AYAs with cancer (n = 83) completed questionnaires including the Checklist Individual Strength (CIS-fatigue), Quality of Life (QoL)-Cancer Survivor, Hospital Anxiety and Depression Scale (reflecting psychological distress), and the Cancer Worry Scale (reflecting fear of cancer recurrence or progression). RESULTS: The vast majority of participants had been treated with chemotherapy (87%) and had no active treatment at the time of participation (73.5%). Prevalence of severe fatigue (CIS-fatigue score ≥35) in AYAs with cancer (48%, n = 40/83) was significantly higher in comparison with matched population-based controls (20%, n = 49/249; p < .001). Severely fatigued AYAs with cancer reported lower QoL compared to non-severely fatigued AYAs with cancer (p < .05). Female gender, being unemployed, higher disease stage (III-IV) at diagnosis, receiving active treatment at the time of study participation, being treated with palliative intent, having had radiotherapy, higher fear of recurrence or progression, and higher psychological distress were significantly correlated with fatigue severity (p < .05). CONCLUSIONS: Severe fatigue based on a validated cut-off score was highly prevalent in this group of AYAs with cancer. QoL is significantly affected by severe fatigue, stressing the importance of detection and management of this symptom in those patients affected by a life-changing diagnosis of cancer in late adolescence or young adulthood.

Learning from long-term adolescent and young adult (AYA) cancer survivors regarding their age-specific care needs to improve current AYA care programs.

BACKGROUND: Despite growing (inter)national awareness and appreciation, age-specific care is still not always self-evident and accepted as standard of care for adolescent and young adult (AYA) cancer patients. It is unknown whether long-term AYA cancer survivors have missed age-specific care, and if so, which survivors missed it and regarding which topics. METHODS: The Netherlands Cancer Registry (NCR) identified all long-term AYA cancer survivors (aged 18-39 years at initial cancer diagnosis, 5-20 years past diagnosis) in the Netherlands, who were invited to participate in a population-based, observational, cross-sectional questionnaire study (SURVAYA study), including questions on care needs. RESULTS: In total, 3.989 AYAs participated (35.3% response rate). One-third of them had a need for age-specific care (33.5%), 41.2% had no need and 25.3% did not know whether they had a need. Those who had a need for age-specific care were significantly more often female, higher educated, diagnosed at a younger age, and treated with chemotherapy, radiotherapy or hormone therapy. Most frequent topics were disease and treatment (29.7%), emotions (24.1%), friends (22.6%), family and children (15.6%), fertility and pregnancy (14.8%), work and reintegration (10.5%), care not tailored (13.8%), and overarching care and life (27.7%). Palliative care (0.0%), spirituality (0.2%), death (0.7%), complementary care (0.7%), and late effects (1.3%) were mentioned least. CONCLUSIONS: A substantial proportion of long-term AYA cancer survivors showed a need for age-specific care, varying by sociodemographic and clinical factors, on a wide variety of topics, which could be targeted to improve current AYA care services.

'Let Me Know If There's Anything I Can Do for You', the Development of a Mobile Application for Adolescents and Young Adults (AYAs) with Cancer and Their Loved Ones to Reconnect after Diagnosis.

Adolescent and young adult (AYA) cancer patients report a need for support to stay in contact with loved ones after diagnosis. In response to this the Dutch AYA 'Young & Cancer' Care Network co-created the mobile application 'AYA Match'. This study describes the cocreational process, the characteristics of the users and their expectations regarding the app. 121 AYA cancer patients and 37 loved ones completed a questionnaire. 68.6% of the loved ones reported 'staying in contact' and 'finding out about the needs and wishes of 'their AYA' during this time' as the main reasons for downloading the application. 41.1% of the AYA cancer patients expected the app to help them communicate to their loved ones what they do or don't want and need. 60% of the loved ones indicated that they would like to use the application to offer help to 'their AYA' with their daily tasks. Patients and their loved ones have similar expectations when it comes to 'normalizing' contact, increasing empathy and mutual understanding about needs and emotions. The AYA Match app could be an adequate answer to the issues experienced regarding contact, support and mutual understanding.

A qualitative study on the involvement of adolescents and young adults (AYAs) with cancer during multiple research phases: "plan, structure, and discuss".

BACKGROUND: Including the lived experience of patients in research is important to improve the quality and outcomes of cancer studies. It is challenging to include adolescents and young adults (AYAs) cancer patients in studies and this accounts even more for AYAs with an uncertain and/or poor prognosis (UPCP). Little is known about involving these AYAs in scientific research. However, by including their lived experiences during multiple phases of research, the quality of the study improves and therefore also the healthcare and quality of life of this unique patient group. We first aimed to document experiences of AYAs and researchers with AYA involvement initiatives using the Involvement Matrix and the nine phases of the research cycle. Second, we aimed to map the (expected) challenges and recommendations, according to patients and researchers, for AYA involvement in each research phase. METHODS: Thirteen semi-structured qualitative interviews were conducted with AYAs and researchers from February 2020 to May 2020. A thematic analysis codebook with a critical realistic framework was used to analyze the data. RESULTS: AYAs and researchers were predominantly positive about AYA involvement within six of the nine phases of research: identify and prioritize topics, develop study design, disseminate information, implement, and evaluate findings. Not all respondents were positive about AYA involvement in the following three phases: formulate research questions, conduct research, and analysis and interpretation. However, few respondents had experience with AYA-researcher collaborations in multiple phases of the research cycle. Last, the results indicate the importance of adding a role (practical support) and two phases (grant application and recruitment) to the Involvement Matrix. CONCLUSION: Our results show the added value of AYA (with a UPCP) involvement within scientific research projects. We recommend researchers to actively think about the level and phase of collaboration prior to each research project, by involving and brainstorming with AYAs at the conception and throughout research projects. Besides, to enhance fruitful participation, we suggest thoroughly discussing the pros and cons of collaboration for each phase together with AYAs via the proposed Involvement Matrix to support transparency. We recommend to report experiences, choices, and results of AYA involvement.

Currently, more and more collaborations exist between patients and researchers in scientific research projects. Patient-research partnerships give patients the opportunity to add value to research by sharing their own experiences. Besides, patients themselves feel heard in their needs and are empowered. However, inclusion of young patients, like young adults with a cancer diagnosis, remains limited in research itself and specifically in the form of active involvement and collaboration initiatives. Thereby little is known about their age-specific problems and needs. This seems especially the case in young patient populations like adolescents and young adults (AYAs) with cancer who have a poor or uncertain prognosis. By analyzing the experiences of AYAs and researchers, this study aimed to unravel if collaboration within research projects is possible, and what defines the added value of such collaboration. Our study shows that researchers, as well as AYAs, think positively about collaborating during most phases of scientific research projects, even for challenging populations like AYAs with an uncertain and/or poor prognosis. Creating awareness of the possibilities of AYA involvement might increase involvement initiatives in future projects. This can be done using the Involvement Matrix. This is an existing tool which we further expanded according to our findings. Researchers and AYAs can fill in this tool (a table) together to plan, structure and discuss their collaboration. Our findings can be validated and might serve as a starting point for other patient groups.

Adolescent and Young Adult (AYA) Cancer Survivorship Practices: An Overview.

Worldwide, more than 1.2 million adolescents and young adults (AYAs; those aged 15-39 years) are diagnosed with cancer each year. Although considerable variability exists according to cancer site and stage of disease, the 5-year relative survival at the time of diagnosis has been estimated at >80% for all AYA patients with cancer combined. Extensive survivorship research in recent decades has focused on patients diagnosed with cancer as children (<15 years) and older adults (>39 years), yet few studies to date have reported outcomes specifically for patients diagnosed as AYAs. With increasing incidence and improving survival for many tumor types, leading to the majority of AYA patients with cancer becoming long-term survivors, there is a critical need for research efforts to inform the survivorship care of this growing population. This article describes the population of AYA cancer survivors according to their epidemiology and late and long-term effects, the challenges and models of AYA survivorship care, as well as future opportunities for research and healthcare.

Health-Related Quality of Life Issues in Adolescents and Young Adults with Cancer: Discrepancies with the Perceptions of Health Care Professionals.

This study aimed to identify health-related quality of life (HRQoL) issues of relevance for adolescent and young adult (AYA) cancer patients, the perception of relevant HRQoL issues for AYA in generalby the health care professionals (HCP), and discrepancies between issues identified by AYAs and HCP. Dutch AYAs aged 18-35 years at the time of cancer diagnosis (N = 83) and HCPs (N = 34) involved in AYA oncology were invited to complete the Quality of Life for Cancer Survivors questionnaire. HCPs rated physical symptoms such as fatigue, appetite, pain, constipation, sleep disorders, nausea and neuropathy among AYA cancer patients significantly higher (i.e., more problems) than AYA cancer patients. AYA cancer patients rated overall physical health and quality of life, happiness, satisfaction, usefulness and support from others, all positively formulated questions, significantly higher (i.e., more positive) than HCPs. The most highly rated issues (negative and positive combined) for AYAs were: perceived support from others, distress about initial cancer diagnosis, distress for family and overall quality of life. HCPs identified distress about diagnosis, treatment, family and interference of illness with employment/study as the most problematic issues (all negative) for AYAs. Five of the ten most common issues listed by patients and HCPs were the same. Male AYAs, patients treated with curative intent and those with a partner rated positive HRQoL issues higher than their counterparts. The discrepancy between the perception of patients and HCPs illustrates the importance of patient involvement in organizing physical and psychosocial care.