Body image disturbances in adolescent and young adult cancer patients confronting infertility risk and fertility preservation decisions.

PURPOSE: Body image is a major psychosocial concern for all cancer patients but can affect the adolescent and young adult (AYA) population in distinct ways. Similarly, the prospect of infertility and the fertility preservation process can create additional stress during cancer treatment. Discussions regarding infertility inherently implicate the body and its reproductive function, but downstream effects on self-perception have not been previously described. The aim of this study was to explore the experiences of AYAs as they considered their risk of infertility and options for fertility preservation (FP), specifically the ways in which this impacted body image and FP decision-making. METHODS: AYA cancer patients (n = 27) aged 12-25 years whose cancer and treatment conferred risk of infertility were recruited through electronic health record query at an NCI-Designated Comprehensive Cancer Center. Participants completed semi-structured interviews, which were recorded, transcribed, and deductively coded for themes related to information needs, knowledge of treatment effects on fertility, and reproductive concerns after cancer. Emergent, inductive themes related to body image were identified. RESULTS: Body image concerns, related to both physical appearance and body functioning emerged. Common concerns included anticipating change as it pertains to the body and its functions, physical discomfort, fear of judgment, and meeting expectations of the body. While these themes are broad in nature, they have been previously explored in relation to body image in general and their emergence in the oncofertility space provides guidance for further optimization of infertility and fertility preservation discussions. CONCLUSIONS: AYA cancer patients experience a multitude of body image related disturbances when faced with the possibility of infertility and fertility preservation. In identifying and exploring these themes, future opportunities for improving oncofertility practice and discussions among AYAs with a focus on body image positivity are called upon.

The relationship between unmet cancer care needs and self-rated health among adolescents and young adults with cancer.

BACKGROUND: Adolescents and young adults (AYA) with cancer face unique psychosocial challenges that often impact their outcomes, including self-rated health. To date, few studies have focused on AYA cancer survivors' multidimensional unmet needs of cancer care in relation to their health status. METHODS/PROCEDURE: This study surveyed 324 AYA cancer survivors in a cross-sectional design using the Cancer Needs Questionnaire - Young People (CNQ-YP). In addition to descriptive statistics and bivariate correlations, multinomial logistic regressions were used for analysis. RESULTS: AYA cancer survivors' daily life needs were found to be significantly and negatively associated with self-rated health, OR = 0.910, 95% CI 0.843, 0.983, p < 0.01, and OR = 0.888, 95% CI 0.818, 0.966, p < 0.01. In addition, the unmet work needs were significantly and positively associated with participants' self-rated health, OR = 1.207, 95% CI 1.003, 1.452, p < 0.05. CONCLUSIONS: Moving beyond simply describing the unique psychosocial needs confronting AYA cancer survivors, this study empirically identified two specific dimensions of unmet needs of AYA cancer survivors that were significantly correlated to their SRH, both of which should be considered in future service and intervention research to support AYAs with cancer.

Banking on Fertility Preservation: Financial Concern for Adolescent and Young Adult Cancer Patients Considering Oncofertility Services.

Purpose: Financial concern is a major issue for adolescent and young adult (AYA) cancer patients. Furthermore, unaddressed oncofertility challenges (e.g., infertility) are linked to psychological distress and decreased overall quality of life. Little is known about how financial concern in terms of oncofertility (i.e., concern regarding affording fertility preservation [FP] services) impacts AYAs' decision making and experiences. Methods: AYA cancer patients (n = 27) aged 12-25 years whose cancer treatment conferred risk of infertility were recruited through electronic health record query. Participants completed semi-structured interviews, which were recorded, transcribed, and deductively coded for themes related to information needs, knowledge of treatment effects on fertility, and reproductive concerns after cancer. Emergent, inductive themes related to financial concern were identified. The Institutional Review Board at the University of Michigan approved this study (HUM#00157267). Results: Financial concern was a dominant theme across the qualitative data. Emergent themes included (1) varied access to health insurance, (2) presence of parental/guardian support, (3) reliance upon financial aid, (4) negotiating infertility risk, and (5) lack of preparation for long-term costs. AYAs relied heavily upon parents for out-of-pocket and insurance coverage support. Some participants sought financial aid when guided by providers. Several participants indicated that no financial support existed for their circumstance. Conclusions: Financial consequences in terms of oncofertility are a major issue affecting AYA cancer patients. The incidence and gravity of financial concern surrounding affording oncofertility services merits attention in future research (measuring financial resources of AYAs' parental/support networks), clinical practice (strategically addressing short- and long-term costs; tailored psychosocial support), and health care policy (promoting legislation to mandate pre- and post-treatment FP coverage).

Evaluating an engaging and coach-assisted online cognitive behavioral therapy for depression among adolescent and young adult cancer survivors: A pilot feasibility trial.

OBJECTIVES: Technology-assisted Cognitive Behavioral Therapy (tCBT) has significant potentials to provide engaging and accessible depression treatment for adolescents and young adults (AYAs) coping with cancer. This study evaluated the feasibility and preliminary efficacy of an engaging and tailorable tCBT - Mind Your Total Health (MYTH) - for AYA cancer survivors' depression. METHODS: Seventeen AYAs diagnosed with cancer were randomly assigned to either the intervention (MYTH) or control group. The intervention group (n = 10) received eight weekly 30-35 minutes coach-assisted tCBT (MYTH), while the control group (n = 7) received active control, BeatingtheBlues (BtB). RESULTS: Eight out of ten participants in the MYTH group completed at least six out of eight sessions, suggesting strong feasibility (80% completion rate) among AYAs with cancer. Efficacy outcomes indicated that participants in the MYTH group reported significant pre- and post-treatment reduction in depression, t(9) = 5.25, p < 0.001, and anxiety, t(9)=5.07, p < 0.001. Notably, participants in the MYTH group reported significantly lower post-treatment depression than participants in the BtB group, t(15) = 2.40, p < 0.05. The between-group difference reflected a significant between-group treatment effect size, d = 1.12, p < 0.05. DISCUSSION: This engaging, tailorable, and coach-assisted tCBT intervention is promising in alleviating depression and anxiety among AYA cancer survivors. Future research needs to include larger sample size and a more diverse patient population.

Change in worry over time among Hispanic women with thyroid cancer.

PURPOSE: The purpose of this study is to assess change in worry over time in Hispanic women with thyroid cancer. METHODS: Worry about recurrence, quality of life, family at risk, death, and harm from treatments was assessed in 273 Hispanic women with thyroid cancer diagnosed in 2014-2015. Subjects were recruited from Surveillance, Epidemiology, and End Results (SEER) Los Angeles. Participants were surveyed at two points in time (time 1: 2017-2018 and time 2: 2019). Multivariable logistic regression was used to determine correlates with high worry (somewhat, quite a bit, very much) versus low worry (not at all, a little) at time 2. RESULTS: For the five worry items, 20.1-39.6% had high worry at both time 1 and time 2. An additional 7.6-13.4% had low worry at time 1 that became high worry at time 2. In multivariable logistic regression controlling for age, recurrence status, education level, and number of complications or side effects symptoms, younger age (20-39) as compared to older (40-79) was associated with high worry about thyroid cancer recurrence (OR 2.16, 95% CI 1.12-4.17). History of recurrent or persistent disease was associated with high worry about harms from treatment (OR 2.94, 95% CI 1.29-6.67). Greater number of complications or side effects of symptoms was associated with more worry across all five items. CONCLUSIONS: Some Hispanic women with thyroid cancer have persistently high worry, with young adult Hispanic women vulnerable to worry about recurrence. IMPLICATIONS FOR CANCER SURVIVORS: Hispanic women with thyroid cancer may benefit from targeted psychosocial support during survivorship, with interventions informed by patient and cancer characteristics.

"We Just Take Care of Each Other": Navigating 'Chosen Family' in the Context of Health, Illness, and the Mutual Provision of Care amongst Queer and Transgender Young Adults.

"Chosen family"-families formed outside of biological or legal (bio-legal) bonds-is a signature of the queer experience. Therefore, we address the stakes of "chosen family" for queer and transgender (Q/T) young adults in terms of health, illness and the mutual provision of care. "Chosen family" is a refuge specifically generated by and for the queer experience, so we draw upon anthropological theory to explore questions of queer kinship in terms of care. We employ a phenomenological approach to semi-structured interviews (n = 11), open coding, and thematic analysis of transcriptions to meet our aims: (1) Develop an understanding of the beliefs and values that form the definition of "chosen family" for Q/T young adults; and (2) Understand the ways in which "chosen family" functions in terms of care for health and illness. Several themes emerged, allowing us to better understand the experiences of this population in navigating the concept of "chosen family" within and beyond health care settings. Emergent themes include: (1) navigating medical systems; (2) leaning on each other; and (3) mutual aid. These findings are explored, as are the implications of findings for how health care professionals can better engage Q/T individuals and their support networks.