Usability and Acceptability of a Web Platform to Host the Group-Based TOGETHER-YA Quality of Life Intervention for Young Adult Cancer Survivors.

BACKGROUND: Young adult (YA) cancer survivors aged 18-39 frequently report unmet health information and peer support needs, as well as poor health-related quality of life (HRQOL). Our team has developed a supportive care intervention, titled TOGETHER-YA, to improve YA cancer survivors' stress management skills. TOGETHER-YA is delivered via videoconference and has shown initial feasibility, acceptability, and promise for improving HRQOL among YA survivors. OBJECTIVE: The purpose of this two-part study was to design and test a website to host the TOGETHER-YA intervention for YA cancer survivors aged 18-39. TOGETHER-YA is a 10-week, group-based program designed to promote health-related quality of life. METHODS: In Part 1, we leveraged an existing online platform and adapted it to meet the needs of TOGETHER-YA. We conducted three iterative waves of usability testing with three YAs per wave to refine the website. In Part 2, we conducted a single-group feasibility trial of TOGETHER-YA using the website. Primary outcomes were feasibility (i.e., recruitment, retention, attendance) and acceptability (i.e., satisfaction). RESULTS: Usability testing participants (N=9) indicated that the TOGETHER-YA website was easy to use (M=5.9, SD=1.3) and easy to learn (M=6.5, SD=0.9) (possible ranges: 1-7). Qualitative feedback identified needed revisions to the aesthetics (e.g., images), content (e.g., session titles), function (e.g., clarity of functionality), and structure (e.g., expandable sections), which were implemented. In the feasibility trial, participants (N=7) were an average of 25 years old (SD=4.7) and mostly non-Hispanic White (57%). Recruitment (70%) and retention (71%) rates and average session attendance (M=7.1, SD=4.2) supported feasibility. Participant agreement with positive statements about TOGETHER-YA and average satisfaction ratings (M=5.06, SD=1.64; possible range: 1-7) demonstrated acceptability. CONCLUSIONS: Results supported the usability, feasibility, and acceptability of the TOGETHER-YA program and website. By hosting the content online, the program effectively addresses YAs' expressed preference for convenience. Future studies are needed to increase TOGETHER-YA's efficiency and explore its efficacy for improving targeted outcomes. CLINICALTRIAL: NCT05597228, October 24, 2022.

Designing Patient-Reported Measures of Fertility: Cognitive Interview Findings from Adolescents and Young Adults with Cancer.

Purpose: Fertility concerns (FC) are central to the well-being of many adolescent and young adult (AYA) cancer survivors. Clinical conversations about FC and fertility preservation are suboptimal, increasing patient distress. The goal of this project was to establish content validity and comprehensibility of self-report questions on FCs for AYAs with cancer. Methods: Following best practices, we conducted: (1) item identification, refinement, and generation; (2) translatability and reading level review; and (3) cognitive interviews. Items were reviewed by five AYAs in each round of cognitive interviews. Results: A systematic search yielded 63 measures and 873 items. Fifty items were subsequently modified to enhance clarity and relevance, representing subdomains of psychological and social/relational FC. Flesch-Kincaid analysis found 31 items written above the 6th grade level, which were subsequently revised. Translatability review resulted in the modification of 3 items. During cognitive interviews, 76% of AYAs found items easy to answer with 52% describing them as "very easy" and 24% as "somewhat easy." Sixty percent of participants indicated the items captured their experiences. The majority of those who reported items only somewhat reflected or did not reflect their experiences suggested items were simply not applicable for their particular case. Conclusion: This study is a critical step toward the foundation for an FC measurement system that is reliable, flexible, developmentally appropriate, comprehensible, translatable, and interpretable. Subsequent steps include psychometric testing to examine the construct validity and reliability of the FC items and calibration to enable the application of computer-adaptive testing and short form development. The evaluation will include potential item response bias by age range, gender identity, and race/ethnicity.

Social isolation, depression, and anxiety among young adult cancer survivors: The mediating role of social connectedness.

BACKGROUND: Social isolation and social connectedness are health determinants and aspects of social well-being with strong associations with psychological distress. This study evaluated relationships among social isolation, social connectedness, and psychological distress (i.e., depression, anxiety) over 1 year in young adult (YA) cancer survivors 18-39 years old. METHODS: Participants were YAs in a large cohort study that completed questionnaires every 2 months for 1 year. Social isolation, aspects of social connectedness (i.e., companionship, emotional support, instrumental support, and informational support), depression, and anxiety were assessed with Patient-Reported Outcomes Measurement Information System short form measures. Mixed-effect models were used to evaluate changes over time. Confirmatory factor analysis and multilevel structural equation modeling were used to define social connectedness as a latent construct and determine whether relationships between social isolation and psychological distress were mediated by social connectedness. RESULTS: Participants (N = 304) were mean (M) = 33.5 years old (SD = 4.7) and M = 4.5 years (SD = 3.5) post-initial cancer diagnosis. Most participants were female (67.4%) and non-Hispanic White (68.4%). Average scores for social well-being and psychological distress were within normative ranges and did not change (p values >.05). However, large proportions of participants reported at least mild social isolation (27%-30%), depressive symptoms (36%-37%), and symptoms of anxiety (49%-51%) at each time point. Across participants, more social isolation was related to less social connectedness (p values <.001), more depressive symptoms (p < .001), and more symptoms of anxiety (p < .001). Social connectedness mediated the relationship between social isolation and depression (p = .004), but not anxiety (p > .05). CONCLUSIONS: Social isolation and connectedness could be intervention targets for reducing depression among YA cancer survivors.

Asking the "Right" Questions about Financial Hardship: Using Cognitive Interviews with Adolescents and Young Adults with Cancer and Their Caregivers to Inform Measure Development.

Purpose: Financial hardship as a result of cancer treatment can have a significant and lasting negative impact on adolescents and young adults (AYAs) and their families. To address a lack of developmentally informed and psychometrically sound measures of financial hardship for AYAs and their caregivers, we used rigorous measurement development methods recommended by the National Institutes of Health's Patient-Reported Outcomes Measurement Information System® (PROMIS®) to determine comprehensibility and relevance of measure content. Methods: Our multi-step approach involved item identification, refinement, and generation; translatability and reading level review; and cognitive interviews. A purposive sample of 25 AYAs and 10 caregivers participated, ensuring representation across age, education, gender, race/ethnicity, and cancer type. Results: Fifty patient-reported and caregiver-reported items were developed across material, psychosocial, and behavioral subdomains of financial hardship. Translatability and reading level reviews resulted in 22 patient-reported and 25 caregiver-reported items being rewritten. Eighty-eight percent of patients and all caregivers described the items as easy to answer. Younger AYAs (15 to 25 years of age) were more likely to say the items were less relevant for them. Forty-six patient-reported and 48 caregiver-reported items were recommended for further testing. Conclusion: This study is the first to use in-depth qualitative methods to center AYA patient and caregiver experiences in the creation of new measures of financial hardship. Data support the comprehensibility and content validity of these preliminary item banks. Future large-scale, quantitative testing will lead to additional refinements and support the use of short forms and computer-adaptive testing for a diverse sample of AYAs and their caregivers.

Protocol of a randomised controlled multicentre trial investigating the effectiveness and safety of a wilderness programme on the mental and physical well-being of adolescents and young adults affected by cancer: the WAYA-2 study.

INTRODUCTION: Adolescents and young adults (AYAs) affected by cancer are an understudied group. Effective interventions are needed to support coping with the late effects of cancer, its treatment and to promote quality of life. Nature-based interventions may be promising in support of the self-management and health of AYAs affected by cancer. However, randomised controlled studies (RCTs) on the effectiveness of such interventions are lacking. We performed a first pilot RCT (n=42) that showed that it is feasible and safe to conduct such a study. Here, we propose a full-scale RCT to investigate the effectiveness and safety of a wilderness programme on the mental and physical health of AYAs affected by cancer. METHODS AND ANALYSIS: Participants are 150 AYAs affected by cancer, aged 16-39 years, who will be randomised to a wilderness (n=75) or a hotel stay (n=75). The wilderness programme is an 8-day intervention including a 6-day wilderness expedition. This is followed 3 months later by a 4-day intervention including a 2-day basecamp. Activities include hiking, backpacking, kayaking, rock climbing, mindfulness and bush-crafting. The comparison group is an 8-day hotel stay followed by a 4-day hotel stay (interventions include two travel days) at the same hotel after 3 months. Primary outcomes are psychological well-being and nature connectedness up to 1 year after the study start. Secondary outcomes are quality of life, physical activity and safety parameters. ETHICS AND DISSEMINATION: The Swedish Ethical Review Authority approved the study protocol on 27 September 2023 (reference: 2023-05247-01). The recruitment started on 19 February 2024 and the first part is planned to end on 31 December 2027. Study results will be disseminated by means of scientific publications, presentations at conferences, popular articles, interviews, chronicles and books. News items will be spread via social media, websites and newsletters. TRIAL REGISTRATION NUMBER: ISRCTN93856392.

Need for Behavioral Interventions for Young Adults Living with Advanced Cancer in the U.S.

The population of young adults (YAs) aged 18-39 living with advanced cancer is growing and faces a compounded set of challenges at the intersection of age and disease. Despite these substantial challenges, behavioral interventions tailored to YAs living with advanced cancer remain scarce. This commentary aims to (1) discuss the unmet psychological, social, and behavioral needs of YAs living with advanced cancer; (2) highlight the paucity of behavioral interventions tailored to this growing population; (3) offer recommendations for the development of behavioral interventions targeting the unique needs of YAs living with advanced cancer; and (4) describe potential far-reaching public health benefits of these targeted behavioral interventions.

Does the Canadian Occupational Performance Measure (COPM) Capture the Complex Experiences of Cancer Survivors? A Mixed Methods Approach.

Occupational therapy practitioners are uniquely positioned to address the needs of cancer survivors. This study aimed to understand the complex needs of survivors using The Canadian Occupational Performance Measure and in-depth interviewing. A convergent, mixed methods approach was utilized with a purposive sample of 30 cancer survivors. The results indicate that while the COPM can be a practical tool to address basic occupational performance problems, the in-depth interviews exposed these challenges are intricately connected to identity, relationships, and roles. Implications for occupational therapy practitioners include a critical approach to evaluation and interventions to capture the complex needs of survivors.

Coping strategies and psychosocial resources among women living with metastatic breast cancer: A qualitative study.

Objective: Despite more women living with metastatic breast cancer (MBC), this population is underrepresented in cancer survivorship research. Few studies have assessed how women with MBC cope with their cancer experience. This qualitative study describes the coping strategies and psychosocial resources utilized by women living with MBC.Methods: Twenty-two women with MBC participated in four focus groups. Transcripts were analyzed using a general inductive approach. Codes derived from participants' responses were subsequently condensed into themes.Results: We identified 12 coping strategies and psychosocial resources and grouped them into five themes: Behavioral Coping Strategies (i.e. stress management, active coping and planning); Cognitive Coping Strategies and Psychological Resources (i.e. cognitive reappraisal, optimism, mindfulness, positive thinking, and religious coping); Existential Approach-Oriented Coping (i.e. acceptance, values-based living, and identity integration); Avoidance (i.e. avoidant coping); and Interpersonal Resources and Seeking Social Support (i.e. social support).Conclusions: Women living with MBC utilize several engagement and disengagement coping strategies, as well as intrapersonal and interpersonal resources. This study provides useful perspectives of women living with MBC that may inform the development of psychosocial interventions. Further research is needed to assess coping strategies and psychosocial resources across different subgroups of MBC patients and determine their impact on cancer outcomes.

Social isolation and social connectedness among young adult cancer survivors: A systematic review.

BACKGROUND: Social isolation and connectedness are social determinants of health that have demonstrated effects on cancer-related outcomes. These constructs have been systematically evaluated among pediatric and older adult cancer populations. In this review, the authors evaluated the prevalence, correlates, and psychosocial implications of social isolation and connectedness among young adult (YA) cancer survivors aged 18-39 years. METHODS: Peer-reviewed articles published in English before June 2021 were identified from database searches and included articles' reference lists according to PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines. Included articles described studies that assessed social isolation and/or connectedness among YA cancer survivors. RESULTS: In total, 5094 unique records were identified; 4143 were excluded after title/abstract screening, and 907 were excluded after full-text review. Forty-four articles were included. Few studies used validated measures or directly assessed social isolation or connectedness. Social isolation was similarly prevalent among YAs and older cancer survivors and noncancer populations. Demographic, clinical, and behavioral risk and protective factors for social isolation were identified. Social isolation was related to worse psychological well-being, whereas social connectedness was often, but not always, related to better psychological well-being. CONCLUSIONS: This growing literature underscores the relevance of social isolation and connectedness as important health determinants among YA cancer survivors. The identified risk and protective factors can identify YAs who especially may benefit from screening for social isolation. Future studies are needed that directly, reliably, and validly evaluate social isolation and connectedness to inform the development of interventions to decrease isolation and increase connectedness.

Financial burden for caregivers of adolescents and young adults with cancer.

OBJECTIVE: Adolescent and young adult (AYA) cancer survivors are vulnerable to cancer-related financial burden, which is likely shared by their caregivers. This study aims to enhance an existing conceptual model of financial burden by conducting concept elicitation interviews with caregivers to generate knowledge that can be translated to inform instrumental and psychosocial support in cancer care. METHODS: Qualitative concept elicitation interviews were conducted with 24 caregivers of AYA cancer survivors (caregivers of adolescents, n = 12; caregivers of emerging adults, n = 12) recruited from four sites. Constant comparative methods were used to identify themes, and results were interpreted and organized into domains of the conceptual model. We also explored COVID-19 related financial impacts among a subset (n = 12) of caregivers. RESULTS: Seven themes emerged, which varied by age group and strengthened the conceptualization of the model. Themes centered on: (1) direct and indirect costs of cancer; (2) impact of socioeconomic status on financial burden; (3) caregiver desire to shield AYAs from distress due to financial burden; (4) strategies to manage cancer-related costs; (5) worries about AYAs' financial future; (6) seeking and receiving financial support; and (7) navigating the healthcare system. Findings also revealed that COVID-19 exacerbates financial burden for some caregivers. CONCLUSIONS: Building upon our prior work, we have adapted the conceptual model of financial burden to reflect perspectives of AYAs, oncology providers, and now, caregivers. An important next step is to develop a reliable and valid self-report measure of financial burden among caregivers of AYA cancer survivors.

Rationale and usability findings of an e-health intervention to improve oral anticancer adherence among breast cancer survivors: The My Journey mindfulness study.

BACKGROUND: Approximately 80% of breast cancer survivors are prescribed oral endocrine therapy (ET) medication for 5-10 years following primary treatment, making adherence to ET a critical aspect of cancer survivorship care. Despite the benefits of ET, non-adherence is problematic, and up to half of breast cancer survivors ave been documented to discontinue ET early. Our team developed My Journey, an online, mindfulness-based program designed to improve adherence to ET. This manuscript describes the usability testing of My Journey and the protocol development for the My Journey randomized feasibility trial. METHODS: Usability participants were women (N = 15) with a diagnosis of hormone receptor-positive non-metastatic breast cancer who had initiated ET. Participant impressions and feedback were collected qualitatively and quantitatively using items on usefulness, satisfaction, and ease of use. Participants in the 8-week feasibility trial (N = 80) will be randomized to receive the web-based My Journey intervention or a health education comparison condition. RESULTS: Quantitative feedback on the usability trial was favorable, with a mean overall usability score of 106.3 (SD = 7.7; Range: 83-115) indicating above average usability. Qualitative data showed that participants found several strengths in the initial design of the My Journey online tool and that participants liked the layout of My Journey. CONCLUSIONS: Findings indicate that the My Journey online tool is useable. The program's feasibility is being evaluated in a randomized trial.

Preliminary Effects of Mindfulness Training on Inflammatory Markers and Blood Pressure in Young Adult Survivors of Cancer: Secondary Analysis of a Pilot Randomized Controlled Trial.

BACKGROUND: This was a secondary analysis of a pilot randomized controlled trial (RCT) of mindfulness-based stress reduction (MBSR) among young adult (YA) survivors of cancer, which showed preliminary evidence for improving psychosocial outcomes. Secondary outcomes assessed were the feasibility of collecting biological data from YAs and preliminary effects of MBSR on markers of inflammation and cardiovascular function. METHOD: Participants were randomized to 8-week MBSR or a waitlist control condition. Participants provided whole blood spot samples for analysis of C-reactive protein (CRP) and interleukin (IL)-6 as well as blood pressure data in-person at baseline and 16-week follow-up. Feasibility was assessed with rates of providing biological data. Linear mixed effects modeling was used to evaluate preliminary effects of MBSR on inflammatory markers and blood pressure over time. RESULTS: Of 126 total participants enrolled, 77% provided biological data at baseline (n = 48/67 MBSR, n = 49/59 control). At 16 weeks, 97% of the 76 retained participants provided follow-up biological data (n = 34/35 MBSR, n = 40/41 control). Relative to the control group, MBSR was associated with decreased systolic blood pressure (p = 0.042, effect sizes (ES) = 0.45) and decreased diastolic blood pressure (p = 0.017, ES = 0.64). There were no changes in CRP or IL-6. CONCLUSION: This was the first study to explore the feasibility of collecting biological data from YA survivors of cancer and assess preliminary effects of MBSR on inflammatory and cardiovascular markers in an RCT. Minimally invasive biological data collection methods were feasible. Results provide preliminary evidence for the role of MBSR in improving cardiovascular outcomes in this population, and results should be replicated.

Identifying a core outcome set for pulmonary sarcoidosis research - the Foundation for Sarcoidosis Research - Sarcoidosis Clinical OUtcomes Taskforce (SCOUT).

Background: Pulmonary sarcoidosis is a rare granulomatous disease of unknown aetiology. Heterogeneity in the outcomes measured in trials of treatment for pulmonary sarcoidosis has impacted on the ability to systematically compare findings, contributing to research inefficiency. The FSR-SCOUT study has aimed to address this heterogeneity by developing a core outcome set that represents a patient and health professional consensus on the most important outcomes to measure in future research for the treatment of pulmonary sarcoidosis. Research design and methods: systematic review of trial registries, narrative synthesis of published qualitative literature on the patient experience and results of a patient survey contributed to the development of a comprehensive list of outcomes that were rated in a two round online Delphi survey. The Delphi survey was completed by patients/carers and health professionals and the results discussed and ratified at an online consensus meeting. Results: 259 patients/carers and 51 health professionals completed both rounds of the Delphi survey. A pre-agreed definition of consensus was applied and the results discussed at an online consensus meeting attended by 17 patients and 7 health professionals). Fifteen outcomes, across five domains (physiological/clinical, treatment, resource use, quality of life, and death), reached the definition of consensus and were included in the core outcome set. Conclusions: The core outcome set represents a patient and health professional consensus on the most important outcomes for pulmonary sarcoidosis research. The use of the core outcome set in future trials, and efforts to validate its components, will enhance the relevance of trials to stakeholders and will increase the opportunity for the research to contribute to evidence synthesis.

A conceptual model of fertility concerns among adolescents and young adults with cancer.

OBJECTIVE: For adolescents and young adults (AYAs), cancer-related fertility concerns (FC) are salient, disruptive, and complex. Clinical communication about FC and fertility preservation options are suboptimal, increasing patient distress. The purpose of this study is to construct a conceptual model of FC among AYAs with cancer to inform future measurement development. METHODS: Concept elicitation interviews were conducted with a purposive sample of stakeholders: 36 AYAs (10 adolescents, 12 emerging adults, and 14 young adults), 36 AYA oncology health care providers, and 12 content experts in cancer-related infertility. The constant comparative method was used to identify themes and properties that illustrate AYAs' conceptualization and/or experience of FC. RESULTS: Thirteen themes characterized FC among AYAs with cancer, varying by stakeholder group and domain affiliations. Themes were grouped by four domains (e.g., affective, information, coping, and logistical), which organized the conceptual model. Affective experiences were further determined to be an important component within the other three domains. AYAs' fertility and fertility preservation experiences were shaped by communication factors and timing factors including placement along the lifespan/cancer continuum. CONCLUSIONS: AYA FC are characterized by uncertainty and confusion that may contribute to future decisional regret or magnify feelings of loss. Results add to previous research by examining individual, relational, and health care factors that fluctuate to inform fertility preservation perceptions and decision-making across the AYA age spectrum. Findings will be used to develop and test new self-report measures of FC among AYAs with cancer and survivors using classic and modern measurement theory approaches.

The Influence of Decision Aids on Prostate Cancer Screening Preferences: A Randomized Survey Study.

PURPOSE: Shared decision making is recommended in regard to prostate cancer screening. Decision aids may facilitate this process but the impact of decision aids on screening preferences is poorly understood. MATERIALS AND METHODS: In an online survey we randomized a national sample of adults to the online decision aids of 1 of 6 professional societies. We compared survey responses before and after decision aid exposure. The primary outcome was the change in participant likelihood of undergoing or recommending prostate cancer screening on a scale of 1-unlikely to 100-extremely likely. Secondary outcomes included change in participant comfort with prostate cancer screening based on the average of 6, 5-point Likert-scale questions. RESULTS: Median age was 53 years in the 1,336 participants and 50% were men. The randomized groups did not differ significantly by race, age, gender, income, marital status or education level. The likelihood of undergoing or recommending prostate cancer screening decreased from 83 to 78 following decision aid exposure (p <0.001). Reviewing the decision aid from the Centers for Disease Control or the American Academy of Family Physicians did not alter the likelihood (each p >0.2). However, the decision aid from the United States Preventive Services Task Force was associated with the largest decrease in screening preference (-16.0, p <0.001). Participants reported increased comfort (from 3.5 to 4.1 of 5) with the decision making process of prostate cancer screening following exposure to a decision aid (p <0.001). CONCLUSIONS: Exposure to a decision aid decreased the participant likelihood of undergoing or recommending prostate cancer screening and increased comfort with the screening process.

Institutional Alliances to Reduce Cancer Disparities in Chicago.

A partnership formed between Northeastern Illinois University (NEIU) and the Robert H. Lurie Comprehensive Cancer Center of Northwestern University sought to address well-documented cancer health disparities in Chicago by developing a collaborative research, training, and educational infrastructure between a minority-serving institution and a National Cancer Institute designated comprehensive cancer center. With a critical examination of partnership documentation and outputs, we describe the partnership's community-engaged approaches, challenges, and lessons learned. Northeastern Illinois University and the Lurie Cancer Center engaged in a yearlong partnership-building phase, identified interdisciplinary research teams, formed a governance structure, and identified collective aims. Partnership outcomes included funded inter-institutional research projects, new curriculum, and an annual research trainee program. Significant challenges faced included uncertain fiscal climate, widespread turnover, and dissimilar institutional demands. Lessons learned from this minority serving institution and comprehensive cancer center partnership may be useful for bridging distinct academic communities in the pursuit of ameliorating health disparities.

Factors Affecting Quality of Life at Different Intervals After Treatment of Localized Prostate Cancer: Unique Influence of Treatment Decision Making Satisfaction, Personality and Sexual Functioning.

PURPOSE: Using patient reported outcomes measures we identified the most informative set of factors associated with quality of life in a large sample of men treated for localized prostate cancer. MATERIALS AND METHODS: We examined relationships with quality of life using FACIT (Functional Assessment of Chronic Illness Therapy). We also hypothesized variables in a sample of men diagnosed with localized prostate cancer who represented different time points since treatment, including less than 12 months in 70, 1 to 3 years in 344, greater than 3 to 5 years in 291 and greater than 5 years in 97. Correlative measures included subscales of MAX-PC (Memorial Anxiety Scale for Prostate Cancer), short forms of PROMIS® and SOMS (Surgical Outcomes Measurement System), TDM-SATS (Treatment Decision-Making Satisfaction Scale) and subscales of the BFI (Big Five Inventory) of personality. RESULTS: Quality of life was significantly associated with hypothesized variables across different time cohorts. In regression models several factors accounted for most of the variability in quality of life scores depending on time since treatment, including 47%, 22%, 29% and 27% at less than 12 months, 1 to 3 years, greater than 3 to 5 years and greater than 5 years, respectively. Upon examining the unique contribution of these variables, treatment decision making satisfaction was the only variable to have a significant and unique contribution to quality of life across all 4 time cohorts (standardized coefficients 0.33, 0.27, 0.31 and 0.49, respectively, p <0.01). In the cohort with 1 to 3 years since treatment erectile function and neurotic personality style also had unique associations with quality of life (standardized coefficients 0.25 and -0.20, respectively). CONCLUSIONS: When considering the short-term and the longer term quality of life of a man after treatment for localized prostate cancer, our findings highlight the importance of treatment decision making satisfaction, erectile function and personality.