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This study aimed to (1) develop TOGETHER-YA, an e-Health-delivered and group-based health-related quality of life (HRQOL) intervention for young adult (YA) cancer survivors aged 18-39 (Part 1), and (2) determine its initial feasibility and acceptability in a single-arm pilot trial (Part 2).TOGETHER-YA is a manualized, 10-week intervention for YA survivors that includes elements of relaxation training, cognitive-behavioral therapy, and health education. In Part 1, content was adapted from existing evidence-based interventions with feedback from YAs (N = 22) in four iterative focus groups. In Part 2, YA survivors (N = 11) participated in a single-arm pilot trial of TOGETHER-YA. Intervention groups were led by a trained facilitator over videoconference. Primary outcomes were feasibility (i.e., recruitment, session attendance, retention) and acceptability (i.e., participant satisfaction).Focus groups reacted positively to TOGETHER-YA and provided actionable recommendations for enhancing its relevance and acceptability, which were implemented. In initial testing, all feasibility and acceptability benchmarks were met; 58% of eligible YAs were recruited, participants attended M = 6 intervention sessions (SD = 3), and 82% of participants were retained post-intervention. On average, participants "agreed" to "strongly agreed" with positive statements about the weekly sessions and the overall program.TOGETHER-YA was developed in collaboration with YA cancer survivors and found to be feasible and acceptable in initial testing. TOGETHER-YA is the first HRQOL intervention for a broad range of YA survivors that is eHealth-delivered for convenience and group-based for peer support. Future large-scale trials should test its efficacy for improving HRQOL.NCT05048316, September 17, 2021; NCT05054569, September 23, 2021.

Context Among adolescents and young adults (AYAs), cancer and its treatment can disturb body image in distinct ways compared to younger or older individuals. Objective Since AYA body image is not well understood, this study was designed to develop a conceptual framework for body image in AYAs with cancer. Methods Concept elicitation interviews were conducted with 36 AYA patients [10 adolescents (15-17 years), 12 emerging adults (18-25 years), 14 young adults (26-39 years)] and health care providers (n = 36). The constant comparative method was used to analyze for themes and properties, with themes considered saturated if they were present and salient across participant sets. Results Twenty themes emerged from participant data. Three themes illustrate a shared understanding of patients' experience of body image: (1) physical changes produce shifts in identity and experience of self; (2) precancer body image shapes how the AYA experiences cancer-related physical changes, and (3) changes to the body are upsetting. Nine themes were unique to patients while eight themes were unique to providers. Patient body image experiences were found to evolve over time, largely affected by concerns about how others view them. Providers appeared attuned to AYA patient body image but recognized that it is not systematically addressed with patients. Conclusion More striking than differences between patient groups is the consistency of themes that emerged. The conceptual framework of body image developed from these data offers an important step toward addressing body image concerns for AYA patients.

Purpose: Among the many challenges that exist among young adults with cancer, those that intersect psychosocial domains have only begun to be addressed by medical, research, and advocacy communities. While some have attempted to empirically document the psychosocial burden of adolescents and young adults (AYAs), there is a paucity of research exploring this phenomenon from the perspective of AYAs themselves. The purpose of this study is to better understand the lived experiences of young adult cancer survivors and the psychosocial impacts that cancer has had on their lives. Methods: We used qualitative focus group methodologies to elicit positive and negative psychosocial impacts of the cancer experience in a young adult cancer sample. Results: We conducted three separate focus groups (n = 16). The average age of participants was 33 and majority were female (75%), Caucasian (50%), and married (44%). The most common cancer diagnoses were breast (38%), colon (13%), and acute myeloid leukemia (13%). Participants reported experiencing multiple emotional and social impacts such as stress, sadness, and fear; identity changes; utilizing different coping strategies; challenges discussing cancer; feeling pressure to be better; feeling abandoned, misunderstood, or invisible; and experiencing role reversals with family members. Conclusions: Participants reported experiencing several emotional and social impacts of cancer on their lives, both negative and positive. Our findings are important for oncology clinical practice and survivorship research activities with young adults, especially given the presence of these impacts over the long term.

This quality improvement initiative aimed to (1) explore the impact of adolescent and young adult (AYA)-specific navigation on attendance at a monthly peer support group for survivors aged 18-39 at a large comprehensive cancer center, and (2) better understanding attendees' preferences for group structure. Group attendance significantly increased following integration of AYA navigation. Using an online survey, we identified priority topics for discussion and desired changes to group organization, leading to modifications to group structure. Results highlight the value of having dedicated staff who proactively orient patients to resources tailored to their unique needs, and the importance of flexible program development that incorporates stakeholder input.

BACKGROUND: The primary purpose of this study was to examine the feasibility and acceptability of participation in a randomized waitlist-controlled intervention of mindfulness-based stress reduction (MBSR) in a young adult cancer sample. A secondary aim was to examine patterns of change in patient reported outcomes (PROs) of physical, social, and emotional functioning. METHODS: Participants were enrolled at a large Midwestern comprehensive cancer center and randomized to MBSR or a waitlist control. Feasibility and acceptability were examined through enrollment metrics and a survey. PROs were gathered at baseline, 8-weeks, and 16-weeks. Descriptive statistics and mixed models were used in analyses. RESULTS: Of 597 eligible participants, 151 (26.5%) consented from which 126 (83.4%) completed baseline measures. Sixty-seven participants were randomized to MBSR, and 59 to the waitlist. Immediately following MBSR, the majority of respondents (72%−78%) reported their experience with mindfulness was very logical and useful to increasing their wellbeing. Compared to waitlist members, MBSR participant’s scores on PROs improved in expected directions. CONCLUSIONS: Our findings suggest that recruitment for an intensive, in-person, multi-week supportive intervention can be challenging with young adults with cancer, similar to other cancer survivor populations; however once enrolled, feasibility and acceptability of MBSR was supported. Further, initial evidence on the role of MBSR on short-term changes in select PROs with this population was also demonstrated.

Context: Early integration of palliative care (PC) into adult oncology practice has been shown to improve quality of life and health care utilization; however, little is known about PC in ...

Minimal clinical trial participation among adolescents and young adults (AYAs) with cancer limits scientific progress and ultimately their clinical care and outcomes. These analyses examine the current state of AYA clinical research participation at a Midwestern comprehensive cancer center and affiliated pediatric hospital to advise program development and increase availability of trials and AYA participation. Enrollment is examined across all diagnoses, the entire AYA age spectrum (15–39), and both cancer therapeutic and supportive care protocols. his study was a retrospective review of electronic medical records via existing databases and registries for all AYAs. Data were collected for AYAs seen by an oncologist at the adult outpatient cancer center or at the pediatric hospital between the years 2010 and 2014. Descriptive statistics and logistic regression analyses were conducted to characterize this sample. In the pediatric setting, 42.3% of AYAs were enrolled in a study compared to 11.2% in the adult setting. Regression analyses in the pediatric setting revealed that AYAs with private insurance or Caucasian race were more likely to participate. Within the adult setting, ethnicity, race, insurance, and diagnosis were associated with study participation; 54.8% of study enrollments were for cancer therapeutic and 43.4% for supportive care studies. These results are comparable to previously published data and support the need for new local and national AYA initiatives to increase the availability of and enrollment in therapeutic clinical trials. The same is true for supportive care studies which play a crucial role in improving quality of life.

BACKGROUND Young adults (YAs; ages 18-39 years) with cancer face interrupted developmental milestones and increased stressors that can adversely influence psychosocial adjustment. Transitioning from active treatment to posttreatment survivorship can be particularly challenging. The purpose of this study is to describe the health-related quality of life (HRQL) and psychological adaptation of YAs after treatment, relative to young adults without cancer. METHODS Three cohorts of YAs of mixed cancer diagnoses (N = 120, 0-12 months after treatment; N = 102, 13-24 months after treatment; and N = 113, 25-60 months after treatment; combined M = 31.8 years old, combined sex = 68% women) and an age-, education-, sex-, and partner status–matched group of healthy control participants (HCs; N = 335) were recruited via an online research panel. All participants completed measures assessing demographic and clinical characteristics, HRQL (physical, emotional, social, and spiritual), and psychological adaptation (anxiety, depression, positive affect, posttraumatic growth). Measure content was slightly modified for applicability to HCs without a cancer history. RESULTS Multivariate analysis of covariance found a significant main effect for group (YAs versus HCs) and a significant group-by-cohort interaction. YAs reported poorer physical (P = .005, d = .22) and emotional well-being (P = .011, d = .20) but better social well-being (P

BACKGROUND Cancer incidence has increased among young adults (YAs) and survival rates have not improved compared with other age groups. Patient-reported outcomes may enhance our understanding of this vulnerable population. METHODS In a multisite prospective study, patients completed a cancer symptom inventory at the time of enrollment (T1) and 4 weeks to 5 weeks later (T2). YAs (those aged ≤ 39 years) with breast or colorectal cancer were compared with older adults (those aged ≥ 40 years) with breast or colorectal cancer with regard to symptom severity, symptom interference, changes over time, and medical care. RESULTS Participants included 1544 patients with breast cancer (96 of whom were YAs) and 718 patients with colorectal cancer (37 of whom were YAs). Compared with older adults, YAs with breast cancer were more likely to report moderate/severe drowsiness, hair loss, and symptom interference with relationships at T1. YAs with colorectal cancer were more likely to report moderate/severe pain, fatigue, nausea, distress, drowsiness, shortness of breath, and rash plus interference in general activity, mood, work, relationships, and life enjoyment compared with older adults. Compared with older adults, shortness of breath, appetite, and sore mouth were more likely to improve in YAs with breast cancer; vomiting was less likely to improve in YAs with colorectal cancer. Referrals for supportive care were few, especially among patients with colorectal cancer. YAs with breast cancer were somewhat more likely to be referred to nutrition and psychiatry services than older patients. CONCLUSIONS YAs reported symptom severity, symptom interference, and variations over time that were distinct from older patients. Distinctions were found to differ by diagnostic group. These findings enhance the understanding of symptom burden in YAs and inform the development of targeted interventions and future research. Cancer 2014;120:2255–2263. © 2014 American Cancer Society.

BACKGROUND The "shared-care model" for patients with cancer involves care coordination between primary care providers (PCPs) and oncologists, with the goal of optimizing survivorship care. However, a high proportion of adolescent and young adult (AYA) cancer survivors do not have a PCP. Study objectives were to increase the percentage of AYAs with a PCP documented in the electronic medical record (EMR) via the use of a best practice advisory (BPA) or "stopgap" intervention; to increase communication between providers by the number of routed clinic notes; and to assess oncology providers' attitudes/beliefs about the model and intervention. METHODS Data were collected for the 6 months before implementation of the BPA to determine the percentage of AYAs with a PCP and the number of notes routed to providers (time point 1 [T1]). The same data were collected at time point 2 (T2) after the BPA had been implemented for 6 months. Oncology providers participated in an education video module and an online survey at T1 and a survey at T2. RESULTS At T1, 47.1% of 756 AYAs had a documented PCP in the EMR. At T2, the percentage increased to 55.1% (P

Cross-sectional data suggest that many individuals with breast cancer experience significant sleep disturbance across the continuum of care. Understanding the longitudinal trajectory of sleep disturbance may help identify factors associated with its onset, severity, or influence on health-related quality of life (HRQL). Study objectives were to observe sleep quality in breast cancer patients prior to, during, and after completion of adjuvant chemotherapy, evaluate its relationship with HRQL and explore correlates over time.Participants were administered patient-reported outcome measures including the Pittsburgh Sleep Quality Index (PSQI) and the Functional Assessment of Cancer Therapy--General (FACT-G), which assesses HRQL. Data were collected prospectively 3-14 days prior to beginning chemotherapy, cycle 4 day 1 of chemotherapy, and 6 months following initiation of chemotherapy.Participants (n = 80) were primarily women (97.5 %) with stage II (69.0 %) breast cancer. Total FACT-G scores were negatively correlated with global PSQI scores at each time point (rho = -0.46, -0.41, -0.45; all p 0.001). Poor sleep quality (PSQI ≥ 5) was prevalent at all time points (48.5-65.8 %); however, there were no significant changes within participants over time. Correlates with sleep quality varied across time points. Participants with poor sleep quality reported worse overall HRQL, fatigue, depression, and vasomotor/endocrine symptoms.These findings suggest that early identification of sleep disturbance and ongoing assessment and treatment of contributing factors over the course of care may minimize symptom burden associated with chemotherapy and prevent chronic insomnia in survivorship.

Objective This study examined the feasibility and acceptability of an Individual Internet Intervention (III) embedded and integrated into an Internet Support Group (ISG) with the ultimate goal of enhancing adherence and learning, compared with an individual internet invention alone. Method Thirty-one posttreatment cancer survivors were randomized in groups of seven to nine to either the 8-week III + ISG intervention or the 8-week III condition. Seventeen participants met the Hospital Anxiety and Depression Scale (HADS) criteria for depressive symptoms (HADS ≥ 8). Results Among all participants, the mean number of logins over 8 weeks was 20.8 ± 17.7 logins for the III + ISG compared with 12.5 ± 12.5 in III-only (p = 0.15). Two participants in the III + ISG dropped out, compared with five in III (p = 0.39). Among the 17 participants with depressive symptoms at baseline, both the Onward and the III-only condition showed large reductions in the depression scale of HADS (d = 1.27 and 0.89, respectively). Improvement over time and time x treatment effects only reached trend significance levels (ps = 0.07 & 0.12) as this pilot was not powered to detect these differences. Conclusion Both the III + ISG and III-only demonstrated pre-post reductions in depressive symptoms and high rates of utilization compared with other web-based treatments for depression. Although it is premature to make any determination as to the efficacy of the interventions tested in this feasibility study, these results indicate that pursuing the III + ISG model, as well as standard IIIs, may be fruitful areas of future research. Copyright © 2012 John Wiley & Sons, Ltd.

Adolescent and young adult (AYA) oncology patients (ages 15-39) have been identified as a group with healthcare disparities including gaps and challenges in diagnosis, access to care, research, clinical trial participation, and cure rates. Like other patient groups with cancer or other chronic illnesses, disparities can lead to poor future health and outcomes, which is a well-recognized concern within the AYA population. Cancer is the leading disease-related cause of death in this age range. Numerous interested groups including the National Cancer Institute have met to address the research and cancer care needs of AYAs. This review highlights how these gaps in care during and after treatment can affect future health of this population of patients. Access to care, models of survivorship care, and lack of provider education are discussed. Survivorship care and use of guidelines, and promotion of psychosocial support and health behaviors during treatment and beyond are essential to optimizing future health of AYA patients.

163 Background: In 2012, a congressional symposium identified the need for services to address psychosocial issues of children with cancer. In 2013, the Institute of Medicine recommended supportive oncology services be initiated at cancer diagnosis. Chicago providers of pediatric cancer are collaborating to improve care for children with cancer and their families focusing on psychosocial stressors and quality of life. Methods: The collaborative conducted a structured review of tools: Psychosocial Assessment Tool (PAT), Social Work Assessment Tool (SWAT), National Comprehensive Cancer Network (NCCN) Problem List, and √IN; with input from providers on stressors throughout the care continuum. The resulting screening tool was created and piloted in English and Spanish at 7 pediatric cancer hospitals. Social workers (SW) informally reported assessment of its usefulness. Results: Parents (n = 85) completed “Getting to Know You and Your Child” screening tool which inquired about caregivers, siblings, child’s interests, school, SSI/SNAP, challenges, and cultural/religious preferences. Providers reported families found the tool useful “to think about support needs.” The tool assessed 12 psychosocial stressors; the mean per patient/family was 2.4 (range 0-11). Most frequent stressors included: lack of support from friends, family, community (29%), paying for food (26%), job flexibility (26%), paying for utilities (25%), medical costs (23%), emotional support for family (22%), school concerns (21%). All who reported temporary residence also reported difficulty paying for housing (p < 0.01). Ten SWs reported this screening tool generated new insight into family structures, identified stressors and informed resolution efforts. Provider recommended adjustments to the screening tool: simplify terms for siblings, hobbies and spiritual, add pet question. Conclusions: Pilot testing of a psychosocial screening tool for pediatric and adolescent oncology informed providers of patient/family needs in a standard manner. Six of the seven pilot sites are implementing this tool as a standard practice. Preliminary data suggests patients and providers find the screener easy to use and informative.

This paper presents a case example of a young woman at genetic risk for future cancer. We discuss psychosocial challenges that adolescents and young adults (AYAs) may share with their cancer survivor peers, and describe an example of psychosocial care. A scientific foundation denoting the needs of AYAs at risk for heritable cancers is lacking, and it is unknown if these AYAs receive adequate support services. This is a call to action for practitioners and researchers to engage in initiatives that assure these AYAs have access to valuable support and more clearly mark their place within the spectrum of AYA oncology.

146 Background: In 2013, the Institute of Medicine report recommended that supportive oncology services be initiated at time of diagnosis. Providers of pediatric cancer care in the Chicagoland community, supported by The Coleman Foundation, sought to define areas for quality improvement of supportive oncology delivery to children. Methods: Focus groups and surveys with clinicians providing pediatric cancer care and supportive services at 14 sites were used to prioritize areas needing improvement. Results: 100% (14/14) of sites participated. Of the eligible sites, 6 were pediatric cancer treatment sites and 8 cancer care community organizations. Sites demonstrated consistent agreement for 8 of the 12 areas of focus for improvement. Over 50% of sites reported areas of focus (table) as important or very important. Conclusions: Sites identified the need for quality improvement in delivery of psychosocial, survivorship and palliative care for pediatric cancer patients. Survey results demonstrate a need for collaboration and efforts to guide care delivery improvement across sites. [Table: see text]

e22022 Background: In 2013, the Institute of Medicine report recommended that supportive oncology services be initiated at time of diagnosis. Providers of pediatric cancer care in the Chicagoland community, supported by The Coleman Foundation, sought to define areas for quality improvement of supportive oncology delivery to children. Methods: Focus groups and surveys with clinicians providing pediatric cancer care and supportive services at 14 sites were used to prioritize areas needing improvement. Results: 100% (14/14) of sites participated. Of the eligible sites, 6 were pediatric cancer treatment sites and 8 cancer care community organizations. Sites demonstrated consistent agreement for 8 of the 12 areas of focus for improvement. Over 50% of sites reported areas of focus (table) as important or very important. Conclusions: Sites identified the need for quality improvement in delivery of psychosocial, survivorship and palliative care for pediatric cancer patients. Survey results demonstrate a need for collaboration and efforts to guide care delivery improvement across sites. [Table: see text]

9064 Background: Little is known about the symptoms experienced by AYA cancer patients (pts) with common solid tumors in outpatient adult oncology clinics. We compared AYA to cancer pts greater than 40 years old in a cohort by severity of cancer, treatment status, symptom burden, symptom changes, and difficulty in caring for them. Methods: In the ECOG E2Z02 Symptom Outcomes and Practice Patterns Study, pts with invasive cancer (ca) of the breast, prostate, colon/rectum, or lung were enrolled from multiple academic (n=6) and community sites (n=32). At study enrollment and 4-5 weeks later pts rated their symptoms on a 0-10 numerical rating scale with the MDASI-ECOG. Descriptive statistics, Fisher’s exact test, and logistic regression models were used to summarize the findings. Results: Of the 3106 evaluable pts, 168 (5.4%) were 40 years old or younger, and were more likely to be female (81.6% vs. 69.2%, P=0.001), and Hispanic (17.3% vs. 9.5%, P=0.001). There were 114 pts with breast ca (mean age 37.5 yrs, 2...

9101 Background: Cross-sectional data suggest that individuals with breast cancer experience significant sleep disturbance pre-, during, and post-chemotherapy and/or radiation therapy. To date, lon...