Translation and psychometric assessment of the mastectomy module of the BREAST-Q questionnaire for use in Nigeria.

BACKGROUND: The majority of non-metastatic breast cancer patients in sub-Saharan Africa are recommended to have mastectomy. The impact of mastectomy on a predominantly young African patient population requires evaluation. The BREAST-Q is a validated patient-reported outcome measure of quality-of-life following breast surgery that has been translated into 30 languages-none in Africa. This study aimed to translate and assess the psychometric properties of the mastectomy module of the BREAST-Q for use in Nigeria. METHODS: The BREAST-Q mastectomy module was translated from English to Yoruba and its psychometric properties assessed using best practice guidelines. Translation was performed in 4 steps: forward translation (x2), back translation, back translation review, and cognitive interviews with post-mastectomy patients. The translated BREAST-Q instrument was administered to post-mastectomy patients (n = 21) alongside the EORTC-QLQ BR23 to evaluate construct validity. Test-retest reliability was evaluated using intraclass correlation coefficients (ICC); surveys were re-administered 4 weeks apart. RESULTS: The translation process identified English phrases not amenable to direct translation, including "emotionally healthy" and descriptions of pain ("nagging," "throbbing," "sharp"). Translations were amended to reflect local context and question intent. During cognitive interviews, patients provided suggestions to simplify complex phrases, e.g. "discomfort in your breast area.". Internal consistency within scales was over 0.70 for psychosocial wellbeing (α = 0.84-0.87), sexual wellbeing (α = 0.98-0.99), physical wellbeing in chest (α = 0.84-0.86), and satisfaction with care (α = 0.89-0.93). ICC for test-retest reliability was moderate (0.46-0.63). CONCLUSIONS: The Yoruba version of the BREAST-Q mastectomy module presents a unique opportunity to adequately capture the experiences of Nigerian women post mastectomy. This instrument is being used in a pilot study of Nigerian patients to identify targets for intervention to improve the patient experience and compliance with breast cancer surgery.

Impact of Disasters on Older Adult Cancer Outcomes: A Scoping Review.

PURPOSE: There is an urgent need to address the growing global cancer burden in the context of complex disaster events, which both disrupt access to oncology care and facilitate carcinogenic exposures. Older adults (65 years and older) are a growing population with multifaceted care needs, making them especially vulnerable to disasters. The objective of this scoping review is to characterize the state of the literature concerning older adult cancer-related outcomes and oncologic care after a disaster event. METHODS: A search was conducted in PubMed and Web of Science. Following Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines for scoping reviews, articles were extracted and screened for inclusion. Eligible articles were summarized using descriptive and thematic analyses. RESULTS: Thirty-five studies met all criteria for full-text review. The majority focused on technological disasters (60%, n = 21), followed by climate-amplified disasters (28.6%, n = 10) and geophysical disasters (11.4%, n = 4). Thematic analysis classified the current evidence into three major categories: (1) studies concerned with carcinogenic exposure and cancer incidence related to the disaster event, (2) studies examining changes in access to cancer care and cancer treatment disruptions as a result of the disaster event, and (3) studies exploring the psychosocial experiences of patients with cancer affected by a disaster event. Few studies focused on older adults specifically, and most of the current evidence focuses on disasters in the United States or Japan. CONCLUSION: Older adult cancer outcomes after a disaster event are understudied. Current evidence suggests that disasters worsen cancer-related outcomes among older adults by disrupting continuity of care and access to timely treatment. There is a need for prospective longitudinal studies following older adult populations postdisaster and studies focused on disasters in low- and middle-income country contexts.

Critical Dynamics in Black and Latino Parents' Perceptions of Childhood COVID-19 Vaccination: How the "Middle" Moves.

National and state data show low adoption of childhood COVID-19 vaccinations, despite emergency use authorizations and availability. We conducted 24 in-depth, semi-structured interviews with Black and Latino parents in New York City (15 in English, 9 in Spanish), who were undecided or somewhat likely to vaccinate their 5 to 11-year-old children in early 2022. The interviews explored the evolution of parental perceptions on childhood COVID-19 vaccines, and were analyzed using a matrix-driven rapid approach to thematic analysis. We present our findings as themes oriented around trust at three levels of the social ecological model. In summary, we found that structural positionality and historical traumas of participants seeded mistrust in institutions and government. This led to parental reliance on personal observations, conversations, and norms within social groups for vaccine decision-making. Our findings also describe key features of trust-building, supportive conversations that shaped the thinking of undecided parents. This study demonstrates how relational trust becomes a key factor in parental vaccine decision-making, and suggests the potential power of community ambassador models of vaccination promotion for increasing success and rebuilding trust with members of the "movable middle."

Suggestions for modifications to the Female Sexual Function Index based on cognitive interviews with sexual and gender minority individuals and cisgender, heterosexual persons.

BACKGROUND: Patient-reported outcome measures for sexual health were often designed for research studies that included only heterosexual, partnered, and cisgender participants; as such, they may have limited applicability for clinical use among sexual and gender minority (SGM) individuals or those without a partner. AIM: We aimed to conduct cognitive interviews with SGM persons and heterosexual women to determine the readability, comprehension, and applicability of questionnaire items to assess sexual function among diverse sexual and gender identities. METHODS: We conducted 4 rounds of cognitive interviews with 52 participants (28 SGM; 24 cisgender, heterosexual) who provided feedback on the comprehension and wording of questionnaire items and response scales. We used items from the Female Sexual Function Index (FSFI) and focused on establishing content validity of a modified measure. Participants made recommendations for changes to the questionnaire, which was iteratively revised between interview rounds. Two independent coders analyzed the transcripts using structural coding based on 5 predefined codes: satisfaction with item, specificity/language change needed, missing/suggested item, patient definitions of concepts, and confusion with item. OUTCOMES: Content validity. RESULTS: After 3 rounds of cognitive interviews and revisions to the questionnaire, participants found the final version acceptable and understandable, thereby reaching thematic saturation and establishing content validity of the modified FSFI. Modifications included the following: replacing all instances of "sexual stimulation" and "intercourse" with "sexual activity (alone or with a partner)," broadening the definition of "vaginal penetration" beyond penile-vaginal penetration, and adding skip logic to include the option "no sexual activity." Participants identified missing concepts important to their sexual health, such as use of an external lubricant. CLINICAL IMPLICATIONS: The FSFI and similar questionnaires need to be adapted to broader clinical practice populations such that all persons' experiences are accurately reflected and assessed, ensuring that sexual health needs can be met more inclusively. STRENGTH AND LIMITATIONS: A strength of the study was using cognitive interviews engaging patient perspectives, which is considered the gold standard for establishing content validity. One limitation is that participants included predominantly White and highly educated women. CONCLUSION: Feedback from interviews supports modifying FSFI items and further psychometric testing, and future studies should evaluate the measure among racially and educationally diverse groups.

Construct validity and responsiveness of a health-related symptom index for persons either treated or monitored for anal high-grade squamous intraepithelial lesions (HSIL): AMC-A01/-A03.

PURPOSE: To determine whether treatment of anal high-grade squamous intraepithelial lesions (HSIL), vs active monitoring, is effective in reducing incidence of anal cancer in persons living with HIV, the US National Cancer Institute funded the Phase III ANal Cancer/HSIL Outcomes Research (ANCHOR) clinical trial. As no established patient-reported outcomes (PRO) tool exists for persons with anal HSIL, we sought to estimate the construct validity and responsiveness of the ANCHOR Health-Related Symptom Index (A-HRSI). METHODS: The construct validity phase enrolled ANCHOR participants who were within two weeks of randomization to complete A-HRSI and legacy PRO questionnaires at a single time point. The responsiveness phase enrolled a separate cohort of ANCHOR participants who were not yet randomized to complete A-HRSI at three time points: prior to randomization (T1), 14-70 (T2), and 71-112 (T3) days following randomization. RESULTS: Confirmatory factor analysis techniques established a three-factor model (i.e., physical symptoms, impact on physical functioning, impact on psychological functioning), with moderate evidence of convergent validity and strong evidence of discriminant validity in the construct validity phase (n = 303). We observed a significant moderate effect for changes in A-HRSI impact on physical functioning (standardized response mean = 0.52) and psychological symptoms (standardized response mean = 0.60) from T2 (n = 86) to T3 (n = 92), providing evidence of responsiveness. CONCLUSION: A-HRSI is a brief PRO index that captures health-related symptoms and impacts related to anal HSIL. This instrument may have broad applicability in other contexts assessing individuals with anal HSIL, which may ultimately help improve clinical care and assist providers and patients with medical decision-making.

Patient Perceptions of a Decision Support Tool for Men with Localized Prostate Cancer.

Purpose. To evaluate patient perceptions of a Web-based decision aid for the treatment of localized prostate cancer. Methods. We assessed patient perceptions of a multicomponent, Web-based decision aid with a preference elicitation/values clarification exercise using adaptive conjoint analysis, the generation of a summary report, and provision of information about localized prostate cancer treatment options. Using a think-aloud approach, we conducted 21 cognitive interviews with prostate cancer patients presented with the decision aid prior to seeing their urologist. Thematic content analysis was used to examine patient perceptions of the tool's components and content prior to engaging in shared decision making with their clinician. Results. Five themes were identified: 1) patients had some negative emotional reactions to the tool, pointing out what they perceived to be unnecessarily negative framing and language used; 2) patients were forced to stop and think about preferences while going through the tool and found this deliberation to be useful; 3) patients were confused by the tool; 4) patients tried to discern the intent of the conjoint analysis questions; and 5) there was a disconnect between patients' negative reactions while using the tool and a contrasting general satisfaction with the final "values profile" created by the tool. Conclusions. Studies are needed to explore the disconnect between patients' expressing negative reactions while going through some components of decision aids but satisfaction with the final output. In particular, we hypothesize that this effect might be explained by cognitive biases such as choice-supportive bias, hindsight bias, and the "IKEA effect." This is one of the first projects to elicit patient reactions while they were completing a decision aid, and we recommend further similar, qualitative postprocess evaluation studies. Highlights: We explored perceptions of a decision aid with education about localized prostate cancer treatment and preference elicitation using adaptive conjoint analysis.Patients found the tool useful but were also confused by it, tried to discern the intent of the questions, and expressed negative emotional reactions.In particular, there was a disconnect between patients' negative reactions while using the tool and general satisfaction with the final values profile generated by the tool, which is an area for future research.

"It Took Away and Stripped a Part of Myself": Clinician Distress and Recommendations for Future Telepalliative Care Delivery in the Cancer Context.

BACKGROUND: The COVID-19 pandemic has led to the rapid expansion of telehealth service delivery. We explored the experiences of a multidisciplinary palliative care team delivering telepalliative care for oncology inpatients during a 10-weeks COVID-19 surge in New York City. METHODS/PARTICIPANTS: We conducted semi-structured qualitative interviews with a targeted sample, employing a phenomenological approach with applied thematic text analysis. An interdisciplinary coding team iteratively coded data using a mix of a priori and inductive codes. Team members first independently reviewed each category, then met to reach consensus on recurring themes. The sample (n = 11) included a chaplain (n = 1), social worker (n = 1), pharmacist (n = 1), physicians (n = 3), physician assistant (n = 1), and nurse practitioners (n = 4). RESULTS: Participants described multidimensional clinician distress as a primary experience in delivering telepalliative care during the COVD-19 surge, characterized by competing loyalties (e.g., institutional obligations, ethical obligations to patients, resentment and distrust of leadership) and feelings of disempowerment (e.g., guilt in providing subpar support, decisional regret, loss of identity as a provider). Participants provided explicit recommendations to improve telepalliative care delivery for acute oncology inpatients in the future. CONCLUSION: Palliative care clinicians experienced personal and professional distress providing inpatient telepalliative care during this COVID-19 surge. Clinician strain providing telehealth services must be explored further as the pandemic and utilization of telehealth evolves. Telepalliative care planning must include attention to clinician wellbeing to sustain the workforce and promote team cohesion, and a focus on infrastructure needed to deliver high-quality, holistic care for oncology patients and their families when in-person consultation is impossible.

Linguistic validation of the Spanish version of the Anal Cancer High-Grade squamous intraepithelial lesions outcomes Research Health-Related Symptom Index (A-HRSI): AMC-A04.

OBJECTIVES: The Anal Cancer High-grade squamous intraepithelial lesions (HSIL) Outcomes Research (ANCHOR) Health-Related Symptom Index (A-HRSI) is a 25-item measure that assesses physical symptoms and impacts, and psychological symptoms. To promote generalizability and equity in the capture of these concepts in Spanish-speaking participants, we linguistically validated a Spanish version of A-HRSI. METHODS: Following independent forward translation and reconciliation of A-HRSI from English to Spanish, two rounds of cognitive interviews were completed with ANCHOR participants who had been diagnosed with anal HSIL in the prior nine months and preferred delivery of their healthcare in Spanish. Interviews were coded to highlight any items and concepts that were reported as being difficult for any reason by ≥ 3 participants, with such items revised during a research team panel discussion and tested in a second round of interviews if applicable. RESULTS: Seventeen participants representing 8 nationalities were enrolled (Round 1 n=10, Round 2 n=7); 7 participants reported not completing high school (41.2%). No difficulties were reported with respect to the theoretical concepts measured by A-HRSI. We made modifications to the Spanish translation of eight items and two response option terms in cases where participants had difficulty understanding a term, experienced problems in discriminating between terms, or preferred the use of an alternative term to represent the concept(s). CONCLUSION: The Spanish version of A-HRSI is a linguistically valid tool that can be used to assess physical symptoms, impacts, and psychological symptoms related to anal HSIL. Language is a tremendous barrier to enrolling patients to clinical trials. The anal cancer high-grade squamous intraepithelial lesions (HSIL) outcomes research [ANCHOR] trial is a randomized clinical trial that recently established that the treatment of anal HSIL, versus active monitoring, is effective in reducing incidence of anal cancer in persons living with HIV (PLWH). The ANCHOR Health-Related Symptom Index (A-HRSI) is a 25-item patient-reported outcomes measure that was developed to assess physical symptoms, physical impacts, and psychological symptoms related to anal HSIL. As approximately 10% of ANCHOR participants preferred the delivery of their healthcare in Spanish, the purpose of the present study was to linguistically validate a Spanish version of A-HRSI. Based on feedback from interviews with 17 participants from the ANCHOR trial who had been diagnosed with anal HSIL in the prior nine months and preferred delivery of their healthcare in Spanish, we made modifications to the Spanish translation of eight items and two response option terms in cases where participants had difficulty understanding a term, experienced problems in discriminating between terms, or preferred the use of an alternative term to represent the concept(s). The Spanish version of A-HRSI is a linguistically valid tool that can be used to assess physical symptoms, impacts, and psychological symptoms related to anal HSIL as part of clinical trials or routine care.

Challenges and positive impact of rare cancer caregiving: A mixed-methods study of caregivers of patients with Erdheim-Chester disease and other histiocytic neoplasms.

Background: The importance of deriving benefit and meaning has been identified among cancer caregivers, but this has yet to be examined in the context of rare cancers. We sought to characterize unmet needs and experiences of caregivers of patients with Erdheim-Chester disease (ECD) and other histiocytic neoplasms (HN) and to identify factors associated with finding benefit and meaning-making in providing care for patients with rare cancers. Methods: Caregivers of patients with ECD and other HN completed quantitative surveys. Linear univariable regression modeling examined associations between unmet needs, social and family support, and intolerance of uncertainty with benefit finding and meaning-making. A subset participated in qualitative interviews assessing experiences of rare cancer caregiving that were analyzed with applied thematic analysis (NCT039900428). Findings: Of caregivers (N = 92, M = 54 years old, 68% female) of patients with ECD (75%) and other HN (25%), 78% reported moderately or severely unmet support needs, most frequently informational (58%) and psychological/emotional (66%) needs. Caregivers with unmet informational, psychological/emotional, and social support needs, difficulty tolerating uncertainty, a longer duration of the patient's illness, lower social support, more family conflict, and higher anxiety and depression symptoms demonstrated less benefit finding and meaning-making (ps <.05). Qualitative interviews (N = 19) underscored information and support needs and the capacity to derive meaning from caregiving. Interpretation: Rare cancer caregivers report numerous unmet information and support needs, needs that arise from disease rarity itself and which are associated with diminished capacity for deriving benefit and meaning from caregiving. Findings highlight targets for interventions to improve support for caregivers with HN and other rare cancers. Funding: NIH P30 CA008748 (PI: Craig Thompson, MD), NIH T32 CA009461 (H.M.; PI: Jamie Ostroff, PhD), Frame Family Fund (E.L.D.), Applebaum Foundation (E.L.D.).

Examining the Impact of COVID-19 on Upper Manhattan Community-Based Organizations: A Qualitative Analysis of Employee Focus Groups.

Community-based organizations (CBOs) play a key role in assisting local communities, especially those in under-resourced areas, through their deep knowledge of the community's needs and available resources. We examined perceptions of COVID-19's impact on health-related services in CBOs located in Upper Manhattan, New York City (serving East Harlem, Central Harlem, Morningside Heights and Hamilton Heights, and Washington Heights and Inwood). Three focus groups were conducted on Zoom in November 2020; focus groups were composed of participants employed at CBOs in this catchment area. Deidentified interview transcripts were evaluated using an iterative process of thematic content analysis. We identified five major themes related to the impact of COVID-19 on community needs: 1) increased mistrust and decreased service utilization, 2) breakdowns in communication, 3) shift in need, 4) increased risk factors for negative health outcomes among staff and community, and 5) decreased funding and an uncertain future. Because of the pandemic, CBOs have pivoted to cater to the immediate and changing needs of the community and, in doing so, revised their menu of services as well as their service delivery model. In trying to maintain connectivity with and the trust of community members, participants had to construct novel strategies and develop new outreach strategies; participants also recognized the role strain of trying to balance community needs with home responsibilities. Given these findings, concern arises around the long-term health and well-being of community members and participants. The government must provide the necessary resources to ensure the viability of CBOs and create a stronger infrastructure for future emergencies.

"Doing palliative care with my hands tied behind my back": telepalliative care delivery for oncology inpatients during a COVID-19 surge.

New York City was a "global COVID-19 hotspot" in spring 2020. Many health teams rapidly transitioned to telehealth platforms. Little is known about the experiences of inpatient palliative care services who delivered telehealth services during the pandemic. This study was aimed to explore the experiences of an interdisciplinary palliative care team in meeting the holistic needs of oncology inpatients via telehealth over a 10-week period during the first COVID-19 surge. A targeted sample of interdisciplinary palliative specialists at an urban comprehensive cancer center participated in in-depth interviews that explored participants' experiences delivering physical, psychosocial, and spiritual care via telehealth. An interdisciplinary coding team followed a rigorous thematic text analysis approach and met regularly to reach consensus on emerging themes. Eleven palliative specialists from six disciplines (chaplaincy, medicine, nursing, pharmacy, physician assistant, and social work) participated. Seventy-three percent reported not receiving telehealth training prior to COVID-19 and 64% were "not at all" or "somewhat comfortable" delivering telepalliative care. Several themes were identified, including the barriers related to telehealth, the impact of telehealth on the quality of relationships with patients, their families, and coworkers, and the changes in perceived self-efficacy of fulfilling job responsibilities. Telehealth use has increased significantly during COVID-19, requiring further evaluation of its utility. Participants reported both positive and negative inpatient telepalliative care experiences associated with various domains of professional functioning, such as communication, relationships with key stakeholders, and self-efficacy. Enhanced telehealth training and support must be improved to sustain the palliative workforce and promote high-quality patient and family care in the future.

In spring 2020, New York City was a COVID-19 global hotspot. The palliative care team at a major cancer center rapidly transitioned to a "virtual service" (i.e., telehealth) without any physical contact with oncology inpatients for a 10-week period. No infrastructure for inpatient telehealth had been established prior to the transition. We wanted to explore how effective the interdisciplinary palliative care team felt in meeting the psychosocial, spiritual, and physical needs of patients and their families via telehealth. The palliative care team consisted of advanced practice providers, physicians, a chaplain, pharmacist, and social worker. Through participant interviews, our research team identified common themes related to the barriers and facilitators of telehealth; various effects on the quality of relationships with patients, their families, and coworkers; and diverse experiences related to the team's perceived effectiveness in delivering telepalliative care. There are several implications to consider. Inpatient practice settings must design telehealth infrastructures to ensure both patient and provider protections when in-person care is not possible. Multilevel policies must direct investments in telehealth training for health professionals to support high-quality care during future public health crises. Research should be directed toward developing and measuring enhanced telehealth interventions to support effective and holistic virtual palliative care delivery for inpatient settings.

Developing a Technology Acceptability and Usage Survey (TAUS) for mHealth Intervention Planning and Evaluation in Nigeria: Pilot Study.

BACKGROUND: Technology acceptability and usage surveys (TAUS) are brief questionnaires that measure technology comfort, typical daily use, and access in a population. However, current measures are not adapted to low- and middle-income country (LMIC) contexts. OBJECTIVE: The objective of this pilot study was to develop a TAUS that could be used to inform the implementation of a mobile health (mHealth) intervention in Nigeria. METHODS: A literature review of validated technology comfort and usage scales was conducted to identify candidate items. The draft measure was reviewed for face validity by an expert panel comprised of clinicians and researchers with cultural, methodological, and clinical expertise. The measure was piloted by radiologists at an oncology symposium in Nigeria. RESULTS: After expert review, the final measure included 18 items organized into 3 domains: (1) comfort with using mobile applications, (2) reliability of internet or electricity, and (3) attitudes toward using computers or mobile applications in clinical practice. The pilot sample (n=16) reported high levels of comfort and acceptability toward using mHealth applications in the clinical setting but faced numerous infrastructure challenges. CONCLUSIONS: Pilot results indicate that the TAUS may be a feasible and appropriate measure for assessing technology usage and acceptability in LMIC clinical contexts. Dedicating a domain to technology infrastructure and access yielded valuable insights for program implementation.

Developing a Mobile Patient-Reported Outcomes Version of the Common Terminology Criteria for Adverse Events Administration System to Capture Postradiation Toxicity in Oncology: Usability and Feasibility Study.

BACKGROUND: Accurate self-reported symptomatic toxicity documentation via the Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) is essential throughout cancer treatment to ensure safety and understand therapeutic efficacy. However, the capture of accurate toxicities from patients undergoing radiation therapy is challenging because this is generally provided only at the time of scheduled visits. OBJECTIVE: This study seeks to establish the usability and feasibility of a mobile PRO-CTCAE Administration System (mPROS) to capture toxicities related to radiation therapy. METHODS: English-speaking adult patients who were undergoing radiation therapy for cancer were enrolled and given a brief demonstration of the Say All Your Symptoms (SAYS) and Symptom Tracking Entry Program (STEP) interfaces of the mPROS app, followed by a patient-use phase where patient actions were observed as they navigated mPROS to enter toxicities. Patient feedback was captured via a semistructured interview and brief questionnaire. RESULTS: We enrolled 25 patients (age: mean 60.7 years; females: n=13, 52%; White patients: n=13; 52%; non-Hispanic patients: n=19, 76%; college graduates: n=17, 68%). Patients almost equally preferred the SAYS (n=14, 56%) or STEP (n=11, 44%) interfaces, with 21 patients (84%) agreeing that they would use mPROS to report their symptoms to their health care team and 19 patients (76%) agreeing that they would recommend mPROS to others. CONCLUSIONS: The mPROS app is usable and feasible for facilitating the patient reporting of radiation therapy-related symptomatic toxicities. A revised version of mPROS that incorporates patient input and includes electronic health record integration is being developed and validated as part of a multicenter trial.

Navigating a newly diagnosed cancer through clinician-facilitated discussions of health-related patient values: a qualitative analysis.

BACKGROUND: Advance care planning, the process through which patient values and goals are explored and documented, is a core quality indicator in cancer care. However, patient values are predominantly elicited at the end of life; patient values earlier in serious illness are not clearly delineated. The objective of this analysis is to assess the content of patient-verified summaries of health-related values among newly diagnosed cancer outpatients in order to develop a theoretical framework to guide future values discussions and optimize person-centered oncologic care. METHODS: Values summaries among patients with gastrointestinal (GI) cancers or myelodysplastic syndrome (MDS) were extracted from the medical record. Modified grounded theory analysis included interdisciplinary team coding of values summaries to identify key domains; code categorization; and identification of thematic constructs during successive consensus meetings. A final round of coding stratified themes by disease type. RESULTS: Analysis of 128 patient values summary documents from 67 patients (gastrointestinal [GI] cancers, n = 49; myelodysplastic syndrome [MDS], n = 18) generated 115 codes across 12 categories. Resultant themes demonstrated patients' focus on retaining agency, personhood and interpersonal connection amidst practical and existential disruption caused by cancer. Themes coalesced into a theoretical framework with 5 sequenced constructs beginning with the cancer diagnosis, leading to 3 nesting constructs of individual identity (character), interpersonal (communication) preferences and needs, and social identity (connection), signifying sources of meaning and fulfillment. Values differences between GI cancer and MDS patients-including greater focus on normalcy, prognosis, and maintaining professional life among GI patients-reflected the distinct therapeutic options and prognoses across these disease groups. CONCLUSIONS: Patient values reflect goals of meaning-making and fulfillment through individual agency and interpersonal supports in the setting of a newly diagnosed cancer. Early, nurse-led values discussions provide important and patient-specific data that are informative and likely actionable by clinicians in the delivery of person-centered care. Values can also facilitate discussions between patients and families and clarify patient preferences.

Psychosocial Needs and Preferences for Care among Adolescent and Young Adult Cancer Patients (Ages 15-39): A Qualitative Study.

Adolescents and young adults (AYAs) require a multidisciplinary approach to cancer care due to their complex biopsychosocial situations and varied developmental maturity. Currently, age and diagnosis determine referral to pediatric or adult oncology, with differing treatment paradigms and service utilization patterns, contributing to suboptimal improvements in outcomes. Understanding the unique perspectives of AYAs is essential to designing patient-centered AYA services. Thus, we conducted six focus groups with AYAs (n = 25) treated by medical or pediatric oncologists to evaluate: (1) the unique experiences of cancer care as an AYA; (2) AYA-specific information needs and communication preferences; and (3) recommendations for service provision, delivery and accommodations for AYAs. Transcripts were analyzed using inductive thematic content analysis and identified six major themes to inform clinically-actionable recommendations and the development of a patient-reported outcome measure: (1) AYAs experience social isolation and loss of independence; (2) AYAs have an uncertain sense of the future and need conversations around survivorship and long-term and late effects; (3) AYAs desire greater control over discussions with their care team; (4) AYAs need additional navigational and social/caregiver supports; (5) AYAs prefer an inclusive AYA space in the hospital; and (6) LGBTQ+ patients experience distinct concerns as AYA cancer patients. These will form the basis for specific and tailored clinical recommendations to improve AYA cancer care delivery.

PASTRY: A nursing-developed quality improvement initiative to combat moral distress.

BACKGROUND: High levels of moral distress in nursing professionals, of which oncology nurses are particularly prone, can negatively impact patient care, job satisfaction, and retention. AIM: "Positive Attitudes Striving to Rejuvenate You: PASTRY" was developed at a tertiary cancer center to reduce the burden of moral distress among oncology nurses. RESEARCH DESIGN: A Quality Improvement (QI) initiative was conducted using a pre- and post-intervention design, to launch PASTRY and measure its impact on moral distress of the nursing unit, using Hamric's Moral Distress Scale-Revised (MDS-R.) This program consisted of monthly 60-minute sessions allowing nurses to address morally distressing events and themes, such as clinicians giving "false hope" to patients or families. The PASTRY program sessions were led by certified clinicians utilizing strategies of discussion and mind-body practices. PARTICIPANTS: Clinical nurses working on an adult leukemia/lymphoma unit. ETHICAL CONSIDERATIONS: This was a QI initiative, participation was voluntary, MDS-R responses were collected anonymously, and the institution's Ethics Committee oversaw PASTRY's implementation. FINDINGS: While improvement in moral distress findings were not statistically significant, the qualitative and quantitative findings demonstrated consistent themes. The PASTRY program received strong support from nurses and institutional leaders, lowered the nursing unit's moral distress, led to enhanced camaraderie, and improved nurses' coping skills. DISCUSSION: Measurement of moral distress is innately challenging due to its complexity. This study reinforces oncology nurses have measurable moral distress. Interventions should be implemented for a safe and healing environment to explore morally distressing clinical experiences. Poor communication among multidisciplinary team members is associated with moral distress among nurses. Programs like PASTRY may empower nurses to build support networks for change within themselves and institutions. CONCLUSION: This QI initiative shows further research on moral distress reduction should be conducted to verify findings for statistical significance and so that institutional programs, like PASTRY, can be created.

"Moving Forward": Older Adult Motivations for Group-Based Physical Activity After Cancer Treatment.

BACKGROUND: Engagement in physical activity (PA) post-treatment can improve health outcomes and quality of life among cancer survivors. The purpose of this study is to explore United States (US) older adult cancer survivors' (OACS) reasons for engaging in group-based PA classes, to identify themes supporting exercise motivations in the context of cancer recovery. METHODS: OACS participating in a fitness program at a large US comprehensive cancer center completed semi-structured interviews. Transcripts were analyzed using modified grounded theory, and demographic data were analyzed descriptively. RESULTS: Modified grounded theory analysis (n = 25; age M = 70.92, SD = 10.82; 9 cancer types) identified individual rationales for exercise grounded in collective experience. Participants' internal motivations for PA are shaped by the desire for control over an uncertain future and post-treatment body, obtained by literally "moving forward" post-cancer; this is supported by external motivations for social connections that present a positive model of survivorship, within a setting that instills confidence and safety. CONCLUSIONS: Exercise can be a way for older adults to tap into internal and external motivations that support cancer survivorship. Interventions that make explicit connections between exercise and cancer recovery, facilitate interpersonal interaction, and promote a sense of safety may be the most effective. The concepts identified in this study can inform the development of future interventions to improve long-term behavior change among OACS and evaluate existing PA programs.