The Development of a Bereavement Support Group Curriculum for Bereaved Parents of Young Adult Children: Bridging the Gap.

Purpose: There is limited research addressing the bereavement needs of parents whose young adult (YA) children have died from cancer. Research within oncology about the impact of child loss has tended to focus on parents of pediatric aged children. We adapted a general bereavement support group curriculum used with adults to address the unique needs of bereaved parents of YAs. Methods: Using a quality improvement framework, 25 bereaved parents of YA children participated in one of three 6-session bereavement support group programs during 2020 and 2021. Due to the coronavirus disease 2019 (COVID-19) pandemic, the programs were offered virtually. The participants provided feedback and completed an evaluation. Results: Nineteen mothers and six fathers participated with 20 (80%) completing the evaluation. The median time since the death of their child was 6 months. The participants evaluated the program highly, reporting that they felt less isolated (4.25/5 on a 5-point Likert scale); that their concerns were similar to others (4.45/5); and the discussion topics were relevant (4.20/5). Other topics that were identified included the impact on the family of losing a YA child, and how other relationships change. Forty-five percent of participants expressed a preference for a hybrid delivery model, incorporating in-person and virtual sessions. The majority also wished to continue meeting monthly, given they had little contact with other bereaved parents of YAs. Conclusion: The general bereavement support group curriculum was readily adapted for use with bereaved parents of YA children who died from cancer. A hybrid delivery model was the preferred method for future groups.

"The simple life experiences that every other human gets": Desire for normalcy among adolescents and young adults with advanced cancer.

BACKGROUND: Adolescents and young adults (AYAs) with advanced cancer identify normalcy as an important component of quality end-of-life care. We sought to define domains of normalcy and identify ways in which clinicians facilitate or hinder normalcy during advanced cancer care. PROCEDURE: This was a secondary analysis of a qualitative study that aimed to identify priority domains for end-of-life care. Content analysis of semi-structured interviews among AYAs aged 12-39 years with advanced cancer, caregivers, and clinicians was used to evaluate transcripts. Coded excerpts were reviewed to identify themes related to normalcy. RESULTS: Participants included 23 AYAs with advanced cancer, 28 caregivers, and 29 clinicians. Participants identified five domains of normalcy including relationships, activities, career/school, milestones, and appearance. AYAs and caregivers identified that clinicians facilitate normalcy through exploration of these domains with AYAs, allowing flexibility in care plans, identification of short-term and long-term goals across normalcy domains, and recognizing losses of normalcy that occur during cancer care. CONCLUSIONS: AYAs with cancer experience multiple threats to normalcy during advanced cancer care. Clinicians can attend to normalcy and improve AYA quality of life by acknowledging these losses through ongoing discussions on how best to support domains of normalcy and by reinforcing AYA identities beyond a cancer diagnosis.

Patient, Family, and Clinician Perspectives on Location of Death for Adolescents and Young Adults With Cancer.

PURPOSE: Adolescents and young adults (AYAs) with cancer have high rates of hospital deaths. It is not clear if this reflects their preferences or barriers to dying at home. METHODS: Between December 2018 and January 2021, we conducted in-depth interviews with AYAs (age 12-39 years) with stage IV or recurrent cancer, family caregivers including bereaved caregivers, and clinicians of AYAs with cancer. Patients were asked about their priorities for care including location of death, caregivers were asked what was most important in the care of their AYA family member, and clinicians were asked to reflect on priorities identified through caring for AYAs. Directed content analysis was applied to interview data, and themes regarding location of death were developed. RESULTS: Eighty individuals (23 AYAs, 28 caregivers, and 29 clinicians) participated in interviews. Most AYAs and caregivers preferred a home death. However, some AYAs and caregivers opted for a hospital death to alleviate caregiver burden or protect siblings from the perceived trauma of witnessing a home death. Lack of adequate services to manage intractable symptoms at home and insufficient caregiver support led some AYAs/caregivers to opt for hospital death despite a preference for home death. Participants acknowledged the value of hospice while also pointing out its limitations in attaining a home death. CONCLUSION: Although most AYAs prefer to die at home, this preference is not always achieved. Robust home-based services for effective symptom management and caregiver support are needed to close the gap between preferred and actual location of death for AYAs.

Voicing their choices: Advance care planning with adolescents and young adults with cancer and other serious conditions.

OBJECTIVES: To determine whether engaging in advance care planning (ACP) using a formal tool, Voicing My CHOiCES (VMC), would alleviate adolescent and young adults (AYAs) anxiety surrounding ACP and increase social support and communication about end-of-life care preferences with family members and health care providers (HCPs). METHODS: A total of 149 AYAs aged 18-39 years receiving cancer-directed therapy or treatment for another chronic medical illness were enrolled at seven US sites. Baseline data included prior ACP communication with family members and HCPs and measures of generalized anxiety, ACP anxiety, and social support. Participants critically reviewed each page of VMC and then completed three pages of the document. ACP anxiety was measured again immediately after the completion of VMC pages. One month later, participants repeated anxiety and social support measures and were asked if they shared what they had completed in VMC with a family member or HCP. RESULTS: At baseline, 50.3% of participants reported that they previously had a conversation about EoL preferences with a family member; 19.5% with an HCP. One month later, 65.1% had subsequently shared what they wrote in VMC with a family member; 8.9% shared with an HCP. Most (88.6%) reported they would not have had this conversation if not participating in the study. No significant changes occurred in social support. There was an immediate drop in anxiety about EoL planning after reviewing VMC which persisted at 1 month. Generalized anxiety was also significantly lower 1 month after reviewing VMC. SIGNIFICANCE OF RESULTS: Having a document specifically created for AYAs to guide ACP planning can decrease anxiety and increase communication with family members but not necessarily with HCPs. Future research should examine ways ACP can be introduced more consistently to this young population to allow their preferences for care to be heard, respected, and honored, particularly by their healthcare providers.

Adolescent and Young Adult Initiated Discussions of Advance Care Planning: Family Member, Friend and Health Care Provider Perspectives.

Background and Aims: End-of-life (EoL) discussions can be difficult for seriously ill adolescents and young adults (AYAs). Researchers aimed to determine whether completing Voicing My CHOiCES (VMC)-a research-informed advance care planning (ACP) guide-increased communication with family, friends, or health care providers (HCPs), and to evaluate the experience of those with whom VMC was shared. Methods: Family, friends, or HCPs who the AYAs had shared their completed VMC with were administered structured interviews to assess their perception of the ACP discussion, changes in their relationship, conversation quality, and whether the discussion prompted changes in care. Open-ended responses underwent thematic analysis. Results: One-month post-completion, 65.1% of AYA had shared VMC completion with a family member, 22.6% with a friend, and 8.9% with an HCP. Among a sample of respondents, family (47%) and friends (33%) reported a positive change in their relationship with the AYA. Participant descriptions of the experience fell into five themes: positive experience (47%), difficult experience (44%), appreciated a guide to facilitate discussion (35%), provided relief (21%), and created worry/anxiety (9%). Only 1 HCP noted a treatment change. Family (76%), friends (67%), and HCP (50%) did not think the AYA would have discussed EoL preferences without completing VMC. Conclusions: VMC has potential to enhance communication about ACP between AYA and their family and friends, though less frequently with HCPs. Participants reported a positive change in their relationship with the AYA after discussing VMC, and described experiencing the conversation as favorable, even when also emotionally difficult.

Patient, Family, and Clinician Perspectives on End-of-Life Care Quality Domains and Candidate Indicators for Adolescents and Young Adults With Cancer.

Importance: End-of-life care quality indicators specific to adolescents and young adults (AYAs) aged 12 to 39 years with cancer have not been developed. Objective: To identify priority domains for end-of-life care from the perspectives of AYAs, family caregivers, and clinicians, and to propose candidate quality indicators reflecting priorities. Design, Setting, and Participants: This qualitative study was conducted from December 6, 2018, to January 5, 2021, with no additional follow-up. In-depth interviews were conducted with patients, family caregivers, and clinicians and included a content analysis of resulting transcripts. A multidisciplinary advisory group translated priorities into proposed quality indicators. Interviews were conducted at the Dana-Farber Cancer Institute, Kaiser Permanente Northern California, Kaiser Permanente Southern California, and an AYA cancer support community (lacunaloft.org). Participants included 23 AYAs, 28 caregivers, and 29 clinicians. Exposure: Stage IV or recurrent cancer. Main Outcomes and Measures: Care priorities. Results: Interviews were conducted with 23 patients (mean [SD] age, 29.3 [7.3] years; 12 men [52%]; 18 White participants [78%]), 28 family caregivers (23 women [82%]; 14 White participants [50%]), and 29 clinicians (20 women [69%]; 13 White participants [45%]). Caregivers included 22 parents (79%), 5 spouses or partners (18%), and 1 other family member (4%); the 29 clinicians included 15 physicians (52%), 6 nurses or nurse practitioners (21%), and 8 social workers or psychologists (28%). Interviews identified 7 end-of-life priority domains: attention to physical symptoms, attention to quality of life, psychosocial and spiritual care, communication and decision-making, relationships with clinicians, care and treatment, and independence. Themes were consistent across the AYA age range and participant type. Although some domains were represented in quality indicators developed for adults, unique domains were identified, as well as AYA-specific manifestations of existing domains. For example, quality of life included global quality of life; attainment of life goals, legacy, and meaning; support of personal relationships; and normalcy. Within communication and decision-making, domains included communication early in the disease course, addressing prognosis and what to expect at the end of life, and opportunity for AYAs to hold desired roles in decision-making. Care and treatment domains relevant to cancer therapy, use of life-prolonging measures, and location of death emphasized the need for preference sensitivity rather than a standard path. This finding differs from existing adult indicators that propose that late-life chemotherapy, intensive measures, and hospital death should be rare. Conclusions and Relevance: The findings of this qualitative study suggest that AYAs with cancer have priorities for care at the end of life that are not fully encompassed in existing indicators for adults. Use of new indicators for this young population may better reflect patient- and family-centered experiences of quality care.

Feasibility and Acceptability of a Mobile Phone App Intervention for Coping With Cancer as a Young Adult: Pilot Trial and Thematic Analysis.

BACKGROUND: Many young adult patients do not receive adequate psychosocial services to help them cope with cancer. OBJECTIVE: This study aims to assess the feasibility and acceptability of a smartphone app (iaya) intervention that was designed to create an engaged community of young adult patients and help them learn emotional coping skills. METHODS: For this single-group pilot trial, 25 young adult patients aged 18-39 years who were receiving active cancer treatment were asked to use the iaya app for 12 weeks. To collect app use data, we used Mixpanel, an analytics platform for apps. Feasibility was assessed through rates of app sessions and the number of coping exercises engaged, and intervention acceptability was evaluated by using an app usability questionnaire and through qualitative interviews at study completion. We collected patient-reported outcome data at baseline and at week 12 to explore self-efficacy for coping with cancer, self-efficacy for managing emotions, perceived emotional support, and quality of life. RESULTS: Baseline patient-reported outcome data indicated that participants scored relatively low on perceived emotional support but reasonably high on self-efficacy for coping with cancer and managing emotions as well as quality of life. Participants had a mean of 13 app sessions (SD 14) and 2 coping exercises (SD 3.83) in 12 weeks. Only 9% (2/23) of participants met our combined feasibility definition of ≥10 app sessions and ≥3 coping skills from different categories. The participants' mean usability score was 73.7% (SD 10.84), which exceeded our predefined threshold of ≥70%, and qualitative feedback was generally positive. CONCLUSIONS: Although perceived acceptable by patients, the iaya smartphone app did not meet the a priori feasibility criteria as a stand-alone app intervention. Future studies should screen participants for unmet coping needs and consider integrating the app as part of psychosocial care for young adult patients.

Adolescent and young adult neuro-oncology: a comprehensive review.

Adolescent and young adult (AYA; ages 15-39) patients represent a population that experiences significant challenges in cancer care and research, exemplified by poorer clinical outcomes as well as unmet psychosocial and reproductive health needs. Despite central nervous system (CNS) tumors being one of the most common malignancies diagnosed in the age group, there is a clear paucity of AYA CNS tumor-specific publications, especially those related to the unique psychosocial and reproductive health needs of this population of patients. In this review, we examine various aspects of AYA oncological care including tumor biology, clinical outcome, clinical trials enrollment rate, site of care, unique psychosocial needs, and oncofertility. We assess the current state of these issues, highlight areas of deficiencies, and outline the steps needed to address these concerns. We emphasize the importance of comprehensive molecular testing as part of the diagnostic work-up, expansion of clinical trial availability, access to psychosocial care and oncofertility expertise, and the development of AYA-specific clinical research to define best practices and advancing care for this population.

The Development of a Bereavement Support Group Curriculum for Young Adults Dealing with the Death of a Partner: A Quality Improvement Project.

Purpose: Little is known about the bereavement needs of young adults (YAs) whose partners have died from cancer. Historically, research about the impact of widowhood has focused on adults in later life. We adapted a bereavement support group curriculum used with older adults to address the unique needs of younger bereaved partners. Methods: Applying a quality improvement framework, nine bereaved YAs whose partners had recently died participated in a 6-session bereavement support group program. The participants completed an evaluation and provided feedback throughout the program. Results: The participants were six females and three males (30-43 years). The average time since the death of their partner was 7 months and four participants had dependent children. The participants evaluated the program highly, reporting they felt less isolated (4.75/5 on a 5-point Likert Scale); their concerns were similar to others (5/5); and the discussion topics were relevant to their situation (4.75/5). Additional topics for the next version of the curriculum included maintaining a relationship with in-laws, being a "solo parent," and dating. The participants also wanted the program to be extended given they had little contact with other bereaved partners. Based on this feedback, we converted the program into a drop-in group format meeting every 3 weeks, accepting new participants on a rolling basis. In parallel with the drop-in group, we plan to offer a revised 8-session bereavement support group twice a year. Conclusion: This pilot demonstrated that the bereavement support group curriculum for older bereaved adults was readily adapted for use with younger bereaved partners.

Impact of cancer on school, work, and financial independence among adolescents and young adults.

BACKGROUND: For adolescents and young adults (AYAs), the diagnosis of cancer can impede social development, especially with respect to education, employment, and financial independence. However, there are limited quantitative data on the extent and trajectory of life disruptions during cancer treatment for AYA patients. METHODS: This was a longitudinal, prospective, questionnaire-based cohort study of 145 AYA patients with cancer aged 15 to 29 years who were treated at a large academic cancer center. Questionnaires were administered shortly after diagnosis and 4 and 12 months after diagnosis. RESULTS: Although half of the participants lived with their parents 6 months before diagnosis, 61% lived with their parents after diagnosis (P = .0002 vs 6 months before diagnosis), with a similar proportion reported to be living with their parents 4 months after diagnosis (61%; P = .001) and 55% doing so 12 months after diagnosis (P = .07). Before diagnosis, 38% of the patients were not attending school. After diagnosis, that proportion rose to 61% (P < .0001), with a similar proportion 4 months after diagnosis (61%; P < .0001); 54% were not in school at 12 months (P = .001). Patients experienced similar decrements in employment (30% not working before diagnosis vs 49% not working after diagnosis; P < .0001) and financial independence (37% with complete financial independence before diagnosis vs 31% after diagnosis; P = .02). Overall, 65% of the patients (94 of 145) had not returned to their precancer baseline in at least 1 of these 4 social domains by 12 months after diagnosis. CONCLUSIONS: For many AYA patients, cancer leads to less engagement with school and work activities and decreased financial independence from parents. Clinicians should engage in early and ongoing discussions with patients about the potential impact of cancer on their lives.

Early information needs of adolescents and young adults about late effects of cancer treatment.

BACKGROUND: Adolescent and young adult (AYA) cancer survivors have high risks of late effects. Little is known about the late-effect information needs of AYAs early in treatment or their role in treatment decision making. This study evaluated the importance, quality, and implications of information about late effects in AYAs recently diagnosed with cancer. METHODS: This study surveyed 201 AYAs with cancer who were 15 to 29 years old and were treated at the Dana-Farber Cancer Institute (Boston, Massachusetts). Patients were approached within 6 weeks of their diagnosis and were asked about their late-effect and infertility information needs, treatment decision making, and communication outcomes. RESULTS: Forty-five percent of the participants were female; 88% were white. Most AYAs (87% [173 of 200]) considered information about the risks of late effects to be extremely or very important; 80% (159 of 200) valued information about infertility. Many were distressed by information about late effects (53% [105 of 200]) and infertility (45% [89 of 200]); those who considered late-effect information distressing were more likely to value this information (P < .0001). Consideration of late effects (41% [82 of 201]) and infertility (36% [72 of 201]) greatly influenced many patients' treatment decision making. Although 92% of the patients (184 of 199) reported receiving high-quality information about the diagnosis, 57% (113 of 199; P < .0001) and 65% (130 of 199; P < .0001) felt that they had received high-quality information about late effects and infertility, respectively. CONCLUSIONS: Most AYAs with cancer value early information about the risks of late effects and infertility, yet many patients felt that they had not received high-quality information about these topics. The development of age-appropriate late-effect communication strategies that recognize high AYA distress may help to address the gap between desired information and perceived information quality.

Framework for planning the delivery of psychosocial oncology services: An American psychosocial oncology society task force report.

OBJECTIVE: While screening for psychosocial distress is now the standard of care in oncology, little guidance is available on how best to deliver services in response to identified needs. The American Psychosocial Oncology Society (APOS) convened a task force with the goal of creating a framework that could aid in planning services and justifying requests for resources. METHODS: Ten experts from multiple disciplines within psychosocial oncology served on the task force, first meeting together as a larger group over 2 days to set an agenda and then subsequently working in smaller teams to execute the goals. The task force used consensus methods for developing recommendations. RESULTS: Three principles were identified for the framework. First, psychosocial oncology is a key component of population health, and population-based approaches to care delivery are required. Second, several key parameters shape psychosocial oncology services: resources, aims, and scope. To guide resource allocation, example priorities were identified for the aims and scope of services. Finally, cancer care centers should strive to ensure the delivery of high-quality psychosocial oncology care across all components of care. A range of practices was ranked by their potential contributions to achieving that goal. CONCLUSIONS: This framework may aid in planning, evaluating, and refining the delivery of responsive psychosocial oncology services.

Communication Regarding Therapeutic Clinical Trial Enrollment Between Oncologists and Adolescents and Young Adults with Cancer.

Adolescent and young adult (AYA) cancer patients enroll in therapeutic clinical trials at low rates. Prior study has focused on trial availability; this research attempts to elucidate the role of communication in individual decision-making. We surveyed 193 AYA patients and reviewed medical records of informed consent discussions. Twenty percent (38/193) of patients were offered trials, 58% (22/38) enrolled. Many were unable to correctly identify whether they were offered trials or enrolled, including 27% (6/22) of patients on clinical trials who believed that they were not. Efforts to improve communication have potential to enhance informed decision-making in this vulnerable population.

Peace of mind among adolescents and young adults with cancer.

OBJECTIVE: Adolescents and young adults (AYAs) with cancer have high rates of psychological distress and unmet support needs. Peace of mind is an important construct among older cancer patients and parents of children with cancer but has not been explored in AYAs. We sought to evaluate the extent to which AYAs with cancer experience peace of mind and to identify factors associated with greater peace of mind. METHODS: We surveyed 193 AYAs with cancer aged 15 to 29 years within 12 weeks of diagnosis; 137 patients completed the same measures again 4 and 12 months after diagnosis. Patients were asked to report peace of mind, measured using items from the Functional Assessment of Chronic Illness, Spiritual Well-being scale (FACIT-Sp); anxiety and depression, using the Hospital Anxiety and Depression Scale (HADS); and experiences surrounding medical communication and decision making. RESULTS: Mean scores for peace of mind were 3.59 at diagnosis (range 1-5, standard deviation 0.84), with similar scores at 4 (3.53, P = .34) and 12 (3.59, P = .94) months. In a multivariable model adjusted for age and gender, patients who reported receiving high-quality information about their cancer had greater peace of mind at diagnosis (ß = .25, P = .03), whereas those who reported holding a passive role in treatment decision making (ß = -.47, P < .0001) or who had anxiety (ß = -.64, P = .0003) or depression (ß = -.51, P = .04) had lower peace of mind. CONCLUSION: Peace of mind did not improve significantly over time for AYAs with cancer. While high-quality communication may be associated with heightened peace of mind, further study is needed to clarify relationships between peace of mind and other psychological variables.

Longitudinal prognostic communication needs of adolescents and young adults with cancer.

BACKGROUND: Although the majority of adolescent and young adult (AYA) patients with cancer desire prognostic information, to the authors' knowledge little is known regarding how preferences for prognostic communication change over time. METHODS: The current study was a longitudinal, prospective, questionnaire-based cohort study of 136 AYA patients with cancer who were aged 15 to 29 years and who were treated at a large academic cancer center. Previously published scales were administered at the time of diagnosis and at 4 months and 12 months after diagnosis. RESULTS: The majority of patients reported that prognostic information was very/extremely important at the time of diagnosis (85%), at 4 months (96%; P = .002 compared with baseline), and at 12 months (81%; P = .02 compared with baseline). Few patients reported that prognostic knowledge was very/extremely upsetting at baseline (7%), at 4 months (9%; P = .44 compared with baseline), or at 12 months (11%; P = .27 compared with baseline). The majority of patients were satisfied with the amount of prognostic information received throughout the year after diagnosis (81%, 86%, and 81%, respectively, at the time of diagnosis, at 4 months, and at 12 months). This percentage did not change between the time of diagnosis and 4 months (P = .16) or between diagnosis and 12 months (P = 1.00). In multivariable analysis, satisfaction with prognostic information received was associated with patient report of high-quality communication (odds ratio, 2.67; 95% CI, 1.38-5.17) and having a >75% chance of cure (odds ratio, 2.39; 95% CI, 1.24-4.61) after adjustment for patient age category, race/ethnicity, and time point of administration. CONCLUSIONS: The majority of AYA patients with cancer were satisfied with prognostic disclosure over time, but a sizeable minority wanted additional information. Desire for prognostic information increased over time. Clinicians should return to prognostic discussions over time to support AYA patients with cancer.

Things that matter: Adolescent and young adult patients' priorities during cancer care.

BACKGROUND: Adolescents and young adults (AYAs) experience cancer while balancing emerging identity and life goals. We investigated AYAs' priorities during cancer, including psychosocial concerns, cure-directed therapy, and potential late effects. METHODS: We surveyed 203 cancer patients aged 15-29 treated at Dana-Farber Cancer Institute, Boston, Massachusetts, and their oncologists. Patients were approached and rated the importance of aspects of treatment, outcomes, and life during therapy. Response options were "extremely," "very," "somewhat," "a little important," or "not at all important." Ratings of "extremely" or "very important" were used as indicators of strong priorities. RESULTS: Patients' three most frequent priorities were cure (97%), being good to the people they care about (95%), and having supportive people around them (94%). Most prioritized being with family (90%), returning to school/work (89%), maintaining relationships with friends (88%), and feeling normal (85%). Fewer prioritized minimizing long-term (78%) and acute side effects (68%) and fertility (59%). Many participants (88%) said that cure influenced their decisions "a great deal," while fewer were influenced by side effects (32%), fertility (36%), or relationships (16%). Most patients (85%) thought their oncologist understood what was most important to them when treatment started. CONCLUSION: Nearly all AYA cancer patients prioritize cure, while maintaining social relationships and a sense of normalcy. These priorities influence decisions they make about treatment to differing degrees, with cure influencing decision-making for most patients. Although the priority of cure is well established, recognizing other AYA priorities allows providers to optimally support these patients from the time of diagnosis.

Adolescent and Young Adult Cancer Patients' Experiences With Treatment Decision-making.

BACKGROUND: Adolescents and young adults (AYAs) with cancer generally want to engage in decision-making but are not always able to do so. We evaluated cancer treatment decision-making among AYAs, including decisional engagement and regret. METHODS: We surveyed 203 AYA patients with cancer aged 15 to 29 (response rate 74%) treated at a large academic center and their oncologists. Patients were approached within 6 weeks of diagnosis and asked to report decision-making preferences and experiences (Decisional Roles Scale) and the extent to which they regretted their initial treatment decision (Decisional Regret Scale) assessed at baseline and 4 and 12 months later. RESULTS: A majority of AYAs (58%) wanted to share responsibility for decision-making with oncologists; half (51%) preferred limited involvement from parents. Although most AYAs held roles they preferred, those who did not reported holding more passive roles relative to oncologists (P < .0001) and parents (P = .002) than they desired. Nearly one-quarter of patients (24%; 47 of 195) experienced regret about initial cancer treatment decisions at baseline, with similar rates at 4 (23%) and 12 (19%) months. In a multivariable model adjusted for age, decisional roles were not associated with regret; instead, regret was less likely among patients who trusted oncologists completely (odds ratio 0.17 [95% confidence interval 0.06-0.46]; P < .001) and who reported that oncologists understood what was important to them when treatment started (odds ratio 0.13 [95% confidence interval 0.04-0.42]; P < .001). CONCLUSIONS: Nearly one-fourth of AYA patients expressed regret about initial treatment decisions. Although some AYAs have unmet needs for decisional engagement, attributes of the patient-oncologist relationship, including trust and mutual understanding, may be most protective against regret.

Taking a "Snapshot": Evaluation of a Conversation Aid for Identifying Psychosocial Needs in Young Adults with Cancer.

PURPOSE: Young adults (YAs) aged 18-35 years with cancer often experience unmet psychosocial needs. We aimed to evaluate a conversation aid ("Snapshot") that offered a framework for discussing YA-specific psychosocial concerns between patients and clinicians. METHODS: We developed and implemented Snapshot between 2014 and 2016 as part of a quality improvement initiative at Dana-Farber Cancer Institute. We extracted pre- and postimplementation data from chart documentation of psychosocial concerns. YAs and social workers provided qualitative feedback on the use of Snapshot in clinical care. RESULTS: Postintervention chart reviews revealed a significant increase in the median number of topics documented in charts after implementation of Snapshot (preintervention median = 9 [range: 1-15] vs. postintervention median = 11 [range 6-15]; p = 0.003). Overall, YAs and social workers reported that using Snapshot improved communication and consistency of psychosocial care, with documented improvement in the following domains: understanding illness (p < 0.001), sexuality and intimacy (p = 0.03), symptom burden (p = 0.003), care planning (p < 0.001), support for caregivers and children (p = 0.02), and social, work, and home changes (p = 0.05). CONCLUSION: Snapshot improved the quality of psychosocial needs assessment among YAs with cancer. Implementation was successful in reducing variability identified in the preintervention cohort and increasing the number of YA-specific psychosocial topics discussed. A standardized conversation aid has the potential to improve quality of care for YAs by enabling early identification and intervention of psychosocial issues for all patients.

Communication About Prognosis With Adolescent and Young Adult Patients With Cancer: Information Needs, Prognostic Awareness, and Outcomes of Disclosure.

Purpose Communication about prognosis affects decisions patients and family members make about cancer care, and most patients say they want to know about their chances of cure. We sought to evaluate experiences with prognosis communication among adolescents and young adults (AYAs) with cancer. Patients and Methods We surveyed 203 AYAs with cancer age 15 to 29 years (response rate, 74%) treated at Dana-Farber Cancer Institute and their oncologists. Patients were approached within 6 weeks of diagnosis and asked to report on their prognosis communication preferences and experiences, their beliefs about likelihood of cure, and psychosocial outcomes of communication, such as trust (using an item from the Trust in Physician Scale), peace of mind (using select items from the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale), and anxiety and depression (using the Hospital Anxiety and Depression Scale). Oncologists were asked to report the patient's likelihood of cure. Results Most patients (83%, 167 of 203 patients) considered prognostic information to be extremely or very important. Patients who reported having received more extensive prognostic disclosure had higher odds of trust in the oncologist (odds ratio [OR], 1.30; 95% CI, 1.01 to 1.67; P = .05), peace of mind (OR, 2.13; 95% CI, 1.29 to 3.51; P = .002), and hope related to physician communication (OR, 1.27; 95% CI, 1.01 to 1.59; P = .04), after adjusting for patient sex, age, race or ethnicity, prognosis, and diagnosis. Disclosure was also associated with lower distress related to knowing about prognosis (OR, 0.65; 95% CI, 0.44 to 0.95; P = .03). However, a majority of patients (62%) reported prognostic estimates that exceeded those reported by physicians (McNemar P < .001). Conclusion Most AYAs with cancer value receiving prognostic information, which is positively associated with aspects of well-being. However, most overestimate chances of cure relative to oncologists, highlighting the importance of efforts to improve communication with this young population.