Patterns and predictors of healthcare use among adolescent and young adult cancer survivors versus a community comparison group

Healthcare use (HCU) during survivorship can mitigate adolescent and young adult (AYA) cancer survivors’ (aged 15–39 years) risk of medical and psychosocial late effects, but this is understudied. We surveyed 93 Australian AYA post‐treatment cancer survivors (Mage = 22.0 years, SD = 3.5; 55.9% female) and a comparison sample of 183 non‐matched AYAs (Mage = 19.7, SD = 3.2; 70.5% female) on their HCU, medication use, depression/anxiety, and general functioning. Relative to our comparison AYAs, a higher proportion of our survivor group reported medical HCU (com-munity‐delivered: 65.6% versus 47.0%, p = 0.003; hospital‐delivered: 31.2% versus 20.3%, p = 0.044) and mental HCU (53.8% vs. 23.5%; p < 0.0001) in the past six months. A higher proportion of our survivors reported taking medications within the past six months than our comparison AYAs (61.3% vs. 42.1%, p = 0.003) and taking more types (p < 0.001). Vitamin/supplement use was most common followed by psychotropic medications. Our survivor group reported lower depression (p = 0.001) and anxiety symptoms (p = 0.003), but similar work/study participation (p = 0.767) to our comparison AYAs. Across groups, psychological distress was associated with higher mental HCU (p = 0.001). Among survivors, those who were female, diagnosed with brain/solid tumors and who had finished treatment more recently reported greater HCU. Future research should establish whether this level of HCU meets AYAs’ survivorship needs

Providing psychological support to parents of childhood cancer survivors: ‘cascade’ intervention trial results and lessons for the future

We conducted a three‐armed trial to assess Cascade, a four‐module group videoconferencing cognitive behavior therapy (CBT) intervention for parents of childhood cancer survivors currently aged <18 years. We allocated parents to Cascade, an attention control (peer‐ support group), or a waitlist. The primary outcome was parents’ health‐related quality of life (PedsQL‐Family Impact/EQ‐5D‐5L) six months post‐intervention. Parents also reported their anxiety/depression, parenting self‐agency, fear of recurrence, health service and psychotropic medication use, engagement in productive activities, confidence to use, and actual use of, CBT skills, and their child’s quality of life. Seventy‐six parents opted in; 56 commenced the trial. Cascade achieved good parent engagement and most Cascade parents were satisfied and reported benefits. Some parents expressed concerns about the time burden and the group format. Most outcomes did not differ across trial arms. Cascade parents felt more confident to use more CBT skills than peer-support and waitlisted parents, but this did not lead to more use of CBT. Cascade parents reported lower psychosocial health scores for their child than waitlisted parents. Cascade parents’ health service use, psychotropic medication use, and days engaged in productive activities did not improve, despite some improvements in waitlisted parents. Our trial was difficult to implement, but participants were largely satisfied. Cascade did not improve most outcomes, possibly because many parents were functioning well pre‐enrolment. We used these findings to improve Cascade and will trial the new version in future

Feasibility, acceptability, and safety of the Recapture Life videoconferencing intervention for adolescent and young adult cancer survivors

© 2018 John Wiley & Sons, Ltd. Objective: Online psychological therapies provide a way to connect adolescent and young adult (AYA) cancer survivors to evidence-based support. We aimed to establish the feasibility, acceptability, and safety of Recapture life, a six-session group-based online cognitive-behavioural intervention, led by a facilitator, for AYAs in the early post-treatment period. Methods: A randomised-controlled trial compared Recapture Life to an online peer-support group control and a waitlist control. Participants could nominate a support person. Acceptability was assessed using study opt-in and retention rates, participant-reported benefits/burdens of participation, and group facilitator burden. We also assessed the feasibility (eg, frequency/impact of technological difficulties) and psychological safety (ie, occurrence of clinically concerning distress) of the program. Results: Sixty-one participants took part (45 AYAs, 51.1% female; 19 support people). The opt-in rate was 30%, the enrolment rate was 87%, and 75% of participants took part in ≥5/6 sessions. AYAs reported high benefit and low burden of participation. Overall, 95 online group sessions were conducted; few required rescheduling by group facilitators (3%), but many took place outside of office hours (~90 hours). It took 40 days on average to create online groups, but established weekly sessions commenced quickly (M = 4.0 minutes). Technological difficulties were common but had a low impact on intervention delivery. Although 54% of AYAs returned a clinically concerning distress screen at some point, none reflected acute mental health risks. Conclusions: The data largely indicate that Recapture Life is an acceptable, feasible, and safe model of evidence-based psychological support for AYAs during early survivorship, which nevertheless experienced common challenges in online/AYA intervention delivery

The experiences of young people living with cancer in regional and remote Australia: a qualitative study

There is limited qualitative research specifically exploring the experiences of young people living with cancer in nonmetropolitan Australia. This article reports on an in-depth qualitative study exploring young people’s experiences of diagnosis, treatment, and postcancer care and support, focusing on the impact of living in regional and remote Queensland, Australia. Thematically coded data from in-depth interviews were managed using NVivo 12 qualitative software. Connections with place, knowledge, people, support, lifestyle, and peers were key themes. Travelling for treatment interrupted these connections, with participants desiring treatment closer to home. Preventive social work in metropolitan and nonmetropolitan areas that supports maintaining connections for young patients from regional and remote areas is recommended. Further research, including the impact on young Aboriginal and Torres Strait Islander people with cancer and on the role of social workers, will inform improvements in social work practice

Experiences of young people living with cancer in nonmetropolitan areas: a review of the literature

This review explores the literature on experiences of young people (15–39 years) living with cancer from nonmetropolitan areas, given most available research has focused on those living in major metropolitan areas. The purpose of the review was to inform (a) clinical practice and (b) future research on young people living with cancer in nonmetropolitan areas. An integrative review method explored peer-reviewed publications in CINAHL, Medline, PsycINFO, SSCI, PsycARTICLES, Socindex, and Google Scholar for literature published over the past 20 years. Twelve studies (reported in 17 articles) were eligible for inclusion, of which most (n = 8) had been conducted in Australia. Findings highlighted “the tyranny of distance” from metropolitan specialist cancer care centers negatively affected young people's health (e.g., delayed diagnoses), with financial distress1, psychosocial, cultural, and other challenges resulting. Negative effects were heightened during major treatment transitions at diagnosis, during, and after cancer treatment. One study found some Indigenous Australians did not report symptoms and refused referrals if it necessitated travelling long distances. Five studies did not report greater challenges experienced by nonmetropolitan compared with metropolitan respondents. Health care professionals helping young people can mitigate negative challenges through education and support at diagnosis about financial distress and psychosocial challenges. We recommend further research target ways to minimize delays in diagnosis, reporting of symptoms or accepting allied health referrals, psychosocial upheaval, financial distress, and explore issues particular to First Nations people, to inform services how to meet unique needs of young people living with cancer from nonmetropolitan areas

"This is the first time I've talked about this": considerations when conducting qualitative research interviews with adolescents and young adults with cancer

ualitative research is a useful and important way to describe and analyze the experiences of adolescents and young adults (AYAs) with cancer. However, undertaking qualitative research with AYAs living with, or beyond, a cancer diagnosis requires careful planning and a well-informed approach for participants with a high level of vulnerability and who are at a crucial stage developmentally. This article reflects on the challenges of including AYAs with cancer between the ages of 16 and 25 years in qualitative research. By drawing on each author's own experiences of engaging in qualitative research interviews with AYAs with cancer, the article provides suggestions regarding how best to manage challenges and yield valuable data describing their experiences. Insights that are shared between qualitative researchers in this field may assist in preparing for the challenges posed by conducting qualitative research with this group and may help researchers to manage this activity successfully

Psychological distress and illness perceptions in thyroid cancer survivors: Does age matter?

Purpose:  To examine the role of differentiated thyroid cancer (DTC) patients' age in illness perceptions and psychological distress, and the potential moderating role of age in the relationship between illness perceptions and psychological distress.  Methods:  We used the Netherlands Cancer Registry to select all patients diagnosed with thyroid cancer between 1990 and 2008 (n = 568). Patients filled out the Hospital Anxiety and Depression Scale (HADS) and Brief Illness Perception Questionnaire. Levels of psychological distress and illness perceptions were compared between the different DTC survivor age groups (adolescents and young adults [AYAs; 18-39 years], middle-aged adults [40-64 years], and older survivors [65-84 years]).   Results:  Among 293 respondents with DTC, AYAs (n = 84) had more faith in the fact that their treatment can help them, and reported a stronger belief in understanding their illness compared to middle-aged (n = 172) and older adults (n = 37). No differences regarding age were seen on the other six illness perception subscales. AYAs did report significantly less distress (HADS caseness = 13.8%) compared to middle-aged (28.7%) and older adults (22.2%). Most illness perception subscales were associated with distress and the associations with age were mixed. AYAs and older patients who believed that their illness would continue for a long time reported more distress, but this association was not found for the middle-aged group.  Conclusion: Illness perceptions play a key role in the experience of distress years after diagnosis and this is related to age. AYA and older cancer patients may be particularly vulnerable to distress related to maladaptive cancer-related beliefs/perceptions

Psychological Distress and Illness Perceptions in Thyroid Cancer Survivors:Does Age Matter?

Contains fulltext : 220532.pdf (Publisher’s version ) (Closed access)Purpose: To examine the role of differentiated thyroid cancer (DTC) patients' age in illness perceptions and psychological distress, and the potential moderating role of age in the relationship between illness perceptions and psychological distress. Methods: We used the Netherlands Cancer Registry to select all patients diagnosed with thyroid cancer between 1990 and 2008 (n = 568). Patients filled out the Hospital Anxiety and Depression Scale (HADS) and Brief Illness Perception Questionnaire. Levels of psychological distress and illness perceptions were compared between the different DTC survivor age groups (adolescents and young adults [AYAs; 18-39 years], middle-aged adults [40-64 years], and older survivors [65-84 years]). Results: Among 293 respondents with DTC, AYAs (n = 84) had more faith in the fact that their treatment can help them, and reported a stronger belief in understanding their illness compared to middle-aged (n = 172) and older adults (n = 37). No differences regarding age were seen on the other six illness perception subscales. AYAs did report significantly less distress (HADS caseness = 13.8%) compared to middle-aged (28.7%) and older adults (22.2%). Most illness perception subscales were associated with distress and the associations with age were mixed. AYAs and older patients who believed that their illness would continue for a long time reported more distress, but this association was not found for the middle-aged group. Conclusion: Illness perceptions play a key role in the experience of distress years after diagnosis and this is related to age. AYA and older cancer patients may be particularly vulnerable to distress related to maladaptive cancer-related beliefs/perceptions

Examining the Cultural Appropriateness of Advance Care Planning Tools for Adolescents and Young Adults With Cancer: An Example of Cross-Cultural Adaptation of the Voicing My CHOiCES Tool

Advance care planning (ACP) is crucial in supporting optimal, patient-centered care for adolescents and young adults (AYAs) with life-limiting illnesses and can reduce unwanted outcomes at end-of-life. While several ACP tools and interventions have been designed for AYAs, most of these were developed in the United States of America (USA). This paper describes a study designed to adapt the AYA ACP tool, Voicing My CHOiCES (VMC), for the Australian population. A 2-stage mixed methods approach was used. Stage 1 involved a multiperspective interview to determine changes for the new Australian VMC. Participants were AYAs between the ages of 15 to 25, healthcare professionals, and parents. For each section, participants responded to questions targeting the helpfulness and usefulness of the items as well as open-ended questions about any suggested content or formatting changes. Stage 2 used think-aloud interviews asking AYA cancer patients and survivors aged between 15 and 39 years to respond to proposed changes for the Australian VMC. Stage 1 participants suggested changes to all pages of VMC, with proposed changes being based around language, content, and format. Stage 2 participants qualitatively confirmed the acceptability of these changes. Our data suggests that even between similar Western cultures, significant adaptations can be made to make ACP tools more culturally appropriate. More research is needed to further adapt ACP tools like VMC for culturally and linguistically diverse groups and to ensure these tools can be accessed by all AYAs with life-limiting illness