Purpose: For many young women with early breast cancer, fertility is a priority. Interventions to retain fertility options generally need to be accessed before chemotherapy, but many women do not receive information regarding these options in a timely fashion. Knowledge about fertility and decisional conflict has not previously been measured in young patients with breast cancer considering future pregnancies. Methods: One hundred eleven young women with early breast cancer who had not yet completed their families were recruited around the time of diagnosis. Knowledge regarding fertility-related information, decisional conflict, and preferences regarding fertility information and decision making was measured. Results: From a potential fertility-related knowledge score of 10, the mean was 5.2 (standard deviation = 2.3; range, 0 to 10). Decreased knowledge was associated with increased decisional conflict about pursuing fertility preserving interventions (odds ratio [OR] = 0.57; 95% CI, 0.44 to 0.73; P < .001). Thirty-one percent of women reported that they would consider undertaking in vitro fertilization (IVF) as a method to conserve their fertility, whereas 38% were uncertain. Consideration of IVF was not related to whether subjects were in a committed relationship (OR = 1.20; P = .716) or a definite desire for more children (OR = 1.54; P = .513). Conclusion: Around diagnosis, many young patients with breast cancer have low levels of knowledge about fertility issues. Further, low knowledge is associated with increased decisional conflict, which is likely to undermine the quality of decision making. These findings suggest that targeted and timely fertility information may reduce decisional conflict and increase informed choice. Neither relationship status nor firm plans regarding future children reliably predict desire to pursue fertility preservation.

Purpose: Health literacy is important for health outcomes in adults. However, little is known about the health literacy of adolescents and young adults (AYAs). The purpose of this study was to provide an updated systematic review examining health literacy among AYAs with and without chronic illness. Specifically, the review considered (1) what sources of health information AYAs use; (2) how well AYAs are able to understand, communicate, and critically evaluate health-related information; and (3) whether health literacy is associated with health behaviors and outcomes. Methods: A systematic search was conducted for literature published in peer-reviewed journals using Medline, Embase, and PsycINFO databases. Results: Of 603 articles reviewed, 14 studies met the inclusion criteria, six of which examined health literacy in a chronic illness population. Studies reported high usage for information sources, though no clear links between source type and health literacy emerged. Adequate health literacy was reported in at least 60% of participants, though poor functional literacy was reported. Few studies explored communicative or critical health literacy; those that did indicated that AYAs experience challenges in these domains. Poorer health literacy was associated with some adverse health outcomes, such as obesity and smoking. For AYAs with a chronic illness, there were mixed findings between health literacy and medication adherence. Conclusion: Understanding the challenges AYAs face with regards to complex developing communicative and critical health literacy skills is crucial. Due to the paucity of research in this field, addressing health literacy across all AYAs will provide a valuable step in guiding research in AYAs with cancer.

There is increasing recognition that adolescents and young adults (AYAs) with chronic illnesses experience common psychological challenges. This article reviewed published psychological interventions for AYAs with cancer, diabetes, juvenile idiopathic arthritis, sickle cell disease, and asthma. Common, efficacious intervention components were examined to generate clearer recommendations for future age-appropriate, evidence-based intervention development. Five databases including MEDLINE, MEDLINE In Process & Non-Indexed Citations, PsycINFO, EMBASE, and CINAHL, were searched for studies involving AYAs aged 10-30 years, using quantitative two-group methods, published from 1979-2010. Of 1,233 abstracts, 87 were extracted for further analysis and a final 25 studies were eligible for inclusion. Thirteen of these studies included AYAs with diabetes, 7 studies involved AYAs with cancer, and 5 included AYAs with other illnesses. Educational interventions showed some significant positive results, particularly when targeted knowledge outcomes were measured. Several skills-based programs, some including parents, showed positive results, with moderate effect sizes. Interventions which taught communication skills, incorporated practical components (e.g., role-plays, homework), involved ≥6 sessions, and spanned at least 3 months in length, appeared more likely to achieve positive outcomes. Skills-based interventions delivered over multiple sessions may yield the most positive results in AYAs with chronic illness. Given the few peer-support groups eligible for review, their efficacy remains unclear. This review points to the need for intervention development that teaches adaptive coping skills, is grounded in theoretical frameworks, and adheres to strict randomization and independent assessments to evaluate efficacy in assisting AYAs adjust to chronic illness.

A growing evidence base highlights the negative impact of poor psychosocial care at end-of-life. Adolescents and young adults (AYAs) 15–39 years of age with cancer face unique medical and psychosocial challenges that make them especially vulnerable when treatment is not successful. Although the importance of age-appropriate medical and psychosocial care is internationally recognized for AYAs across the cancer trajectory, there is little guidance on best-practice care and communication practices with AYAs as they approach the end-of-life. We conducted a narrative review and found evidence points to the potential benefits of introducing palliative care teams early in the care trajectory. Research undertaken to date emphasizes the importance of exploring AYAs' preferences around end-of-life issues in a repeated, consistent manner, and highlighted that AYAs may have strong preferences on a range of issues such as being able to stay in their own home, being comfortable and free from pain, and expressing their wishes to loved ones. We highlight a number of best-practice recommendations to guide clinicians around the critical elements of when, who, what, and how end-of-life conversations may be best facilitated with AYAs. Gaps in the evidence base remain, including research focusing on better understanding barriers and facilitators to timely, age-appropriate end-of-life communication for AYAs with different diagnoses, where discordance between AYA-parent preferences exists, and when AYAs die at home versus in hospital. We have proposed a new model to support clinicians and researchers to better conceptualize how interacting individual, familial, and sociocultural factors impact end-of-life communication with AYAs in clinical settings.

A cancer diagnosis is 2.9 times more likely to occur during the adolescent and young adult years than in younger children. This spike in incidence coincides with a life stage characterised by psychological vulnerability as young people strive to attain numerous, critical developmental milestones. The distress young people experience after cancer treatment seriously jeopardises their ability to move into well-functioning adulthood. This article presents the protocol of the Recapture Life study, a phase II three-arm randomised controlled trial designed to evaluate the feasibility and efficacy of a new intervention in reducing distress and improving quality of life for adolescent and young adult cancer survivors. The novel intervention, “ReCaPTure LiFe” will be compared to a both a wait-list, and a peer-support group control. Ninety young people aged 15–25 years who have completed cancer treatment in the past 1–6 months will be recruited from hospitals around Australia. Those randomised to receive Recapture Life will participate in six, weekly, 90-minute online group sessions led by a psychologist, involving peer-discussion around cognitive-behavioural coping skills (including: behavioural activation, thought challenging, communication and assertiveness skills training, problem-solving and goal-setting). Participants randomised to the peer-support group control will receive non-directive peer support delivered in an identical manner. Participants will complete psychosocial measures at baseline, post-intervention, and 12-months post-intervention. The primary outcome will be quality of life. Secondary outcomes will include depression, anxiety, stress, family functioning, coping, and cancer-related identity. This article reviews the empirical rationale for using group-based, online cognitive-behavioural therapy in young people after cancer treatment. The potential challenges of delivering skills-based programs in an online modality are highlighted, and the role of both peer and caregiver support in enhancing the effectiveness of this skills-based intervention is also discussed. The innovative videoconferencing delivery method Recapture Life uses has the potential to address the geographic and psychological isolation of adolescents and young adults as they move toward cancer survivorship. It is expected that teaching AYAs coping skills as they resume their normal lives after cancer may have long-term implications for their quality of life. ACTRN12610000717055