Evaluation of a Conference on Cancer-Related Financial and Legal Issues: A Potential Resource to Counter Financial Toxicity.

This study describes the conception, development, and growth of the Triage Cancer Conference hosted by Triage Cancer, a national nonprofit organization providing free legal and financial education to the cancer community. We conducted a retrospective analysis of post-conference participant surveys. Descriptive statistics were calculated for participant demographics, and acceptability, feasibility, and appropriateness were evaluated. From 2016-2021, 1239 participants attended the conference and completed post-conference surveys. Participants included social workers (33%), nurses (30%), and cancer patients/survivors (21%), with representation from over 48 states. Among those who reported race, 16% were Black, and 7% were Hispanic. For acceptability, more than 90% of participants felt that the conference content, instructors, and format were suitable and useful. For feasibility, more than 90% of participants felt that the material was useful, with 93-96% reporting that they were likely to share the information and 98% reporting that they would attend another triage cancer event. Appropriateness was also high, with >80-90% reporting that the sessions met the pre-defined objectives. Triage Cancer fills an important gap in mitigating financial toxicity, and formal evaluation of these programs allows us to build evidence of the role and impact of these existing resources. Future research should focus on adding validated patient-reported outcomes, longer-term follow-up, and ensuring inclusion and evaluation of outcome metrics among vulnerable populations.

Oncology social workers' involvement in palliative care: Secondary data analysis from nationwide oncology social workers survey.

OBJECTIVES: Social workers are vital in delivering psychosocial services in palliative care, yet their specific roles in palliative oncology remain undefined. This study aimed to delineate the current practice role of oncology social workers involvement in palliative care in the United States. METHODS: This study utilized a cross-sectional design and involved secondary analysis of data from a nationwide survey focused on workforce conditions for oncology social workers. The participants were social workers who were directly involved in providing care to cancer patients and delivering palliative care services. They completed an online survey in which they indicated the relevance of 91 tasks related to their practice. The survey also collected individual demographic and work-related characteristics. Exploratory factor analysis was used to achieve the study objective. RESULTS: Responses from a secondary data set of 243 oncology social workers involved in palliative care results in a 6-factor solution comprising 34 tasks. These factors were identified as: Therapeutic Interventions for Individuals, Couples, and Families; Facilitate Patient Care Decision-making; Care Coordination; Assessment and Emotional Support; Organization and Community Service; and Equity and Justice. All 6 factors demonstrated good internal reliability, as indicated by Cronbach's alpha scores above 0.70. SIGNIFICANCE OF RESULTS: The findings can be used to develop job descriptions and education for social workers employed in palliative cancer care. The clear role descriptions also make social work visible to other professionals in palliative oncology. By clarifying the roles of oncology social workers, this study contributes to the improvement of palliative care delivery and enhances interprofessional collaboration within cancer care teams.

Differentiating gender-based reproductive concerns among adolescent and young adult cancer patients: A mixed methods study.

INTRODUCTION: Few studies have examined the distinct reproductive concerns (RC) of men and women in the adolescent and young adult (AYA) cancer patient population. The purpose of this mixed-methods study was to explore and differentiate the RC of AYAs. METHODS: Participants completed the Reproductive Concerns After Cancer (RCAC) scale and participated in a semistructured interview. Interviews were deductively coded based on an analytic schema derived from the RCAC. RESULTS: After identifying participants through the electronic health record, 27 younger AYAs, ages 12-25, enrolled in the study. Four inductive themes emerged and differed by gender. These include differential temporality, acceptance, and openness to alternatives, partner influence, and parental/guardian influence. AYA men reported fewer RC (M = 49.4, SD = 9.6) compared to AYA women (M = 56.8, SD = 8.4). CONCLUSIONS: Oncofertility care providers are advised to account for short- and long-ranging concerns based on AYAs' gender. Future evaluations of patient-reported outcome measures specific to AYA RC are recommended.

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

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

Challenges and Opportunities of Epidemiological Studies to Reduce the Burden of Cancers in Young Adults.

There are >1.9 million survivors of adolescent and young adult cancers (AYA, diagnosed at ages 15-39) living in the U.S. today. Epidemiologic studies to address the cancer burden in this group have been a relatively recent focus of the research community. In this article, we discuss approaches and data resources for cancer epidemiology and health services research in the AYA population. We consider research that uses data from cancer registries, vital records, healthcare utilization, and surveys, and the accompanying challenges and opportunities of each. To illustrate the strengths of each data source, we present example research questions or areas that are aligned with these data sources and salient to AYAs. Integrating the respective strengths of cancer registry, vital records, healthcare data, and survey-based studies sets the foundation for innovative and impactful research on AYA cancer treatment and survivorship to inform a comprehensive understanding of diverse AYA needs and experiences.

A Developmental Science Approach to Informing Age Subgroups in Adolescent and Young Adult Cancer Research.

PURPOSE: Adolescent and young adult (AYA; diagnosed ages 15-39) cancer survivors are developmentally heterogenous, and this population consists of at least three distinct theoretically informed subgroups, as follows: adolescents, emerging adults, and young adults. However, there are limited evidence-based recommendations for delineating the validity of these subgroups in cancer-specific research. We sought to inform recommended chronological age ranges for each subgroup based on developmental processes. METHODS: The data were collected using a 2x3 stratified sampling design (on-vs. off-treatment; ages 15-17, 18-25, 26-39) and a cross-sectional survey. AYAs (N = 572) completed three subscales of the Inventory of Dimensions of Emerging Adulthood (identity exploration, experimentation/possibilities, and other-focused), and we used regression tree analyses to identify distinct shifts in mean subscale scores that would indicate unique subgroups. Models included (a) chronological age, (b) chronological age + cancer-related variables, and (c) chronological age + sociodemographic/psychosocial variables as predictors of each developmental measure. RESULTS: The recommended age ranges for AYA survivors receiving active treatment were consistent with prior research as follows: adolescents ages 15-17, emerging adults ages 18-24, and young adults ages 25-39. Models for off-treatment survivors suggested four distinct subgroups: adolescents ages 15-17, emerging adults ages 18-23, and 'younger' (ages 24-32) and 'older' young adults (ages 33-39). No sociodemographic or psychosocial variables meaningfully shifted these recommendations. DISCUSSION: Our results suggest that three developmental subgroups remain appropriate for on-treatment survivors, but a second young adult subgroup (ages 33-39) emerged for off-treatment survivors. Therefore, development disruptions may be more likely to occur or manifest in post-treatment survivorship.

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

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

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

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

Salary and student loan debt for oncology social workers: Findings from the oncology social work competencies, opportunities, roles and expertise (CORE) survey.

PURPOSE: To better understand the current salaries and student loan debt levels among oncology social workers (OSWs). DESIGN: Cross-sectional study using online survey. SAMPLE: OSWs across a variety of cancer care settings in the U.S. (n = 1055). METHODS: Salary and debt were collected via single ordinal variables. Crosstabs and chi-square tests were used to examine whether salary and debt differ by demographic and work-related characteristics. FINDINGS: Median OSW salaries ranged from $60,001 to $70,000. Three-fourths of OSWs reported having student loan debt. Younger and recently graduated OSWs and OSWs of color were more likely to have greater student loan debt than their counterparts. CONCLUSIONS: Relative low salary and debt burden have important implications for securing a current and future OSW workforce. IMPLICATIONS FOR PSYCHOSOCIAL POLICY: Adequate reimbursement and loan repayment opportunities for frontline OSWs will better secure this workforce. Advocacy efforts to identify OSWs qualified for loan forgiveness programs are warranted.

Moral Distress Among Oncology Social Workers.

PURPOSE: Literature on moral distress among oncology social workers (OSWs) is sparse. The aim of the current study was to examine the prevalence of moral distress and its domains of influence, and to identify demographic and work-related characteristics associated with moral distress among OSWs. METHODS: Data came from the Oncology Social Work Competencies, Opportunities, Roles, and Expertise survey, conducted from August to September 2020 (during the COVID-19 global pandemic). Data collected included demographic information (eg, age, sex, and race) and work-related characteristics (eg, job position, organization type, work setting, employment status, salary, years in the profession, and OSW-C certification). Moral distress was measured using the Measure of Moral Distress for Healthcare Professionals. Tests of association, including multivariate linear regression, were conducted to achieve the research aims. RESULTS: Total moral distress scores on the Measure of Moral Distress for Healthcare Professionals (range 0-432) for 745 OSWs ranged from 1 to 273, with an average score of 74.0. The three highest indicators of moral distress were observed in the patient or family experience domain. Higher levels of moral distress were associated with younger age, being a direct service provider, provision of inpatient cancer care, and more years in the profession. CONCLUSION: OSWs are experiencing moral distress. Institutional investments in professional education and support of OSWs are needed to mitigate and possibly prevent moral distress experienced by cancer care providers and thus ensure the delivery of quality psychosocial care for patients with cancer and their families.

Addressing distress management challenges: Recommendations from the consensus panel of the American Psychosocial Oncology Society and the Association of Oncology Social Work.

Distress management (DM) (screening and response) is an essential component of cancer care across the treatment trajectory. Effective DM has many benefits, including improving patients' quality of life; reducing distress, anxiety, and depression; contributing to medical cost offsets; and reducing emergency department visits and hospitalizations. Unfortunately, many distressed patients do not receive needed services. There are several multilevel barriers that represent key challenges to DM and affect its implementation. The Consolidated Framework for Implementation Research was used as an organizational structure to outline the barriers and facilitators to implementation of DM, including: 1) individual characteristics (individual patient characteristics with a focus on groups who may face unique barriers to distress screening and linkage to services), 2) intervention (unique aspects of DM intervention, including specific challenges in screening and psychosocial intervention, with recommendations for resolving these challenges), 3) processes for implementation of DM (modality and timing of screening, the challenge of triage for urgent needs, and incorporation of patient-reported outcomes and quality measures), 4) organization-inner setting (the context of the clinic, hospital, or health care system); and 5) organization-outer setting (including reimbursement strategies and health-care policy). Specific recommendations for evidence-based strategies and interventions for each of the domains of the Consolidated Framework for Implementation Research are also included to address barriers and challenges.

Six months in: COVID-19 and its impact on oncology social work practice.

The extent to which oncology social workers (OSWs) are available and adapting to disruptions in service delivery throughout the COVID-19 pandemic is unknown.Objectives: The purpose of this report is to outline the initial impact of COVID-19 on oncology social work practice during the first six months of the pandemic.Methods: As part of a nationwide investigation of workforce conditions for OSWs, three professional organizations surveyed their members to assess the effects of COVID-19 on changes to work hours, employment status, work setting, pay, and mode for patient contact (e.g., telephone or videoconference).Findings: Among 939 OSWs, 20% reported a reduction in work hours, and two-thirds indicated a temporary shift in work to home, with most patient contact occurring primarily via telephone or videoconference.Implications: Results speak to the essential nature of oncology social work and the need for evidence to inform OSW training and advocacy efforts for however long the pandemic continues.

Oncology social work intervention index (OSWii): An instrument to measure oncology social work interventions to advance research.

BACKGROUND/PURPOSE: There is much interest in screening for and treating psychosocial distress in cancer patients; however, little is known about if and how psychosocial services are provided for patients demonstrating significant levels of distress. Oncology social workers (OSWs) are the primary providers of psychosocial care for cancer patients and their families, yet there is no widely-used and empirically-validated instrument that captures the range of interventions provided by OSWs. The purpose of this paper is to describe the development of the Oncology Social Work Intervention Index (OSWii), designed to measure interventions provided by OSWs, and the results of testing the instrument. METHODS: We conducted a content analysis of data collected by the Association of Oncology Social Work's Project to Assure Quality Cancer Care (APAQCC). We analyzed 3,194 responses from an open-ended question that described social work interventions following a distress screen. Five investigators coded the data in an iterative process to enhance instrument validity. The resulting instrument measuring OSWii was piloted with 38 oncology social workers across 156 individual cases. RESULTS: OSWs who piloted the OSWii spent a majority of time (72%) engaging in clinical interventions. The user assessment revealed that data entry was rapid, the instrument was easy to use, and the content was relevant to the cancer treatment setting. CONCLUSIONS AND IMPLICATIONS: Using a standardized instrument that reflects OSWs' clinical interventions is critical for researchers to examine the impact of psychosocial interventions on patient outcomes. This index may also advance the translation of scientific findings into patient-centered psychosocial cancer care. This pilot test suggests that the OSWii is both scalable and useful.

Measuring health-related quality of life in adolescent and young adult cancer survivors with the National Institutes of Health Patient-Reported Outcomes Measurement Information System® : Comparing adolescent, emerging adult, and young adult survivor perspectives.

OBJECTIVE: Our knowledge of symptom burden and functioning among adolescent and young adult (AYA; diagnosed ages 15-39) cancer survivors has been hindered by variability in health-related quality of life (HRQOL) measurement associated with developmental and disease heterogeneity among AYAs. We aimed to examine the variability in domain-specific aspects of HRQOL as a function of cancer type and developmental stage to clarify commonalities and differences using the NIH Patient-Reported Outcome Measurement Information System® . METHODS: Five hundred seventy-two AYAs were recruited by an online research panel using stratified sampling (treatment status: on vs. off; developmental stage: adolescents, emerging adults, young adults). Participants completed questionnaires that included sociodemographic characteristics, clinical history, and the adult version of the Patient-Reported Outcomes Measurement Information System® -29 (PROMIS-29). Generalized linear models were run for each HRQOL domain and included treatment status, developmental stage, and cancer type (hematologic vs. solid tumor) and their interactions as independent variables. RESULTS: There were no significant differences in any HRQOL domain by cancer type, and few significant differences were observed in PROMIS domains between developmental groups among on-treatment AYA survivors. In contrast, off-treatment emerging adults and young adults reported significantly higher symptoms and worse functioning compared to adolescents (all ps ≤ 0.003). CONCLUSIONS: AYAs diagnosed in different developmental stages, particularly among off-treatment survivors, experienced diverse constellations of symptoms and functioning, and developmental stage was a more critical predictor of HRQOL than cancer type. These results suggest that supportive care interventions developed for AYA cancer survivors must be tailored and flexible by developmental stage and treatment status.

Institutional capacity to provide psychosocial care in cancer programs: Addressing barriers to delivering quality cancer care.

OBJECTIVE: This study investigates barriers and promoters to delivering quality psychosocial services in 58 cancer programs across North America. METHODS: Oncology care providers (n = 2008) participated in a survey in which they identified barriers and promoters for delivering psychosocial care at their respective institutions. Multilevel modeling was used to examine (a) the extent to which provider and institutional characteristics were associated with the most common barriers, and (b) associations between perceived barriers and institutional capacity to deliver psychosocial services as measured by the Cancer Psychosocial Care Matrix. RESULTS: Across 58 Commission on Cancer-accredited programs in North America, the most frequently reported barriers were inadequate number of psychosocial care personnel, lack of funding, inadequate amount of time, lack of systematic procedures, and inadequate training for oncology providers. Overall, there were few significant differences in reported barriers by type of institution or type of provider. In general, the most frequently reported barriers were significantly associated with the institution's capacity to deliver quality psychosocial care. In particular, the lack of a systematic process for psychosocial care delivery significantly predicted lower levels of institutional capacity to deliver quality psychosocial care. CONCLUSIONS: When identifying barriers, respondents reported a greater number of institutional barriers than barriers related to individual provider or patient characteristics. These results present a compelling case for cancer programs to implement and monitor systematic procedures for psychosocial care and to integrate these procedures in routine clinical practice.

Shifting Needs and Preferences: Supporting Young Adult Cancer Patients During the Transition from Active Treatment to Survivorship Care.

PURPOSE: This study was designed to identify and explore the social support needs and preferences of young adult cancer patients during the transition process from active treatment to survivorship care. METHODS: Semi-structured qualitative interviews were conducted with study participants (n = 13, ages 17-25 at the time of cancer diagnosis) within ∼6 months of completion of active treatment and again 3 months later. Participants completed a sociodemographic questionnaire at the first study visit. Applied thematic analysis was used to identify themes from participant interviews. RESULTS: Six key themes and 12 subthemes emerged regarding participant interactions with their support system ("Being there," "Staying strong," and "Treat me the same") and health care team ("Connection and relationship building" and "Seeking knowledge and engaging in advocacy"), as well as treatment effects ("Uncertainty, Loss, & Changes in Identity" and "Ups & Downs of Physical Symptoms"), coping strategies ("Keep busy" and "Keep a positive vibe"), support resources ("Support needs change over time"), and post-treatment experiences ("Trying new things to cope with losses" and "Managing expectations with realities"). CONCLUSION: Study findings suggest that supportive care needs can change during the transition process from active treatment to survivorship care. Young adult life transitions, such as finding employment and making new friendships, are more stressful when complicated by ongoing physical and psychological treatment effects. Social stressors and potential barriers to participation in supportive care services should be discussed openly with patients and caregivers, especially prior to transitions in care.

Prevalence of psychosocial distress in cancer patients across 55 North American cancer centers.

Routine distress screening in United States oncology clinics has been mandatory since 2015. OBJECTIVE: This study was the first to assess distress in a geographically diverse sample of cancer patients following mandated distress screening implementation by oncology social workers. METHODS: Sites were self-selected via social workers who applied to participate in the Association of Oncology Social Work's Project to Assure Quality Cancer Care, advertised through their social media outlets and conference. Electronic screening records were collected from 55 cancer treatment centers in the United States and Canada. Cases required cancer diagnoses and Distress Thermometer (DT) scores to be included. Distress rates and rates by age, sex, cancer type, and ethnicity were examined. RESULTS: Of 4664 cases, 46% (2157) experienced significant distress (DT score ≥ 4). Being female, age 40-59, and having diagnoses of pancreatic or lung cancer was associated with increased likelihood of distress. Half of cases experience clinically-significant distress, though this need was not evenly distributed across patient or cancer types. CONCLUSION: Identifying those at risk for distress may help inform optimal resource allocation. Methods to address needs of distressed patients in cases of limited resources are discussed.

Integrative Oncology Scholars Program: A Model for Integrative Oncology Education.

OBJECTIVES: Oncology providers are often confronted by patients who use complementary or alternative therapies, but have limited knowledge or confidence on how to advise patients on appropriate use. Despite this, there are few opportunities for oncology providers to learn about complementary or alternative therapies, while at the same time there is a high demand for integrative oncology (IO) training. To address a gap in IO educational opportunities, and particularly for nonphysicians, we created the Integrative Oncology Scholars (IOS) Program. The program's goal is to train 100 IO leaders and facilitate partnerships between them and complementary practitioners. DESIGN: Four iterations of a year-long National Cancer Institute-funded educational program that combines in-person team-based learning and eLearning to teach the evidence, application, and philosophy supporting IO. SETTINGS: In-person sessions take place at the University of Michigan, and eLearning is implemented using a Canvas website (Instructure, Inc., Salt Lake City, UT). SUBJECTS: Nurses, social workers, physician assistants, psychologists, physicians, pharmacists, and physical/occupational therapists with active oncology practices. Educational intervention: Four cohorts of 25 oncology providers per year will learn the evidence base for complementary and alternative approaches to a wide number of oncology topics, including symptom control, dietary supplements commonly used by cancer patients, diet, and the utility of specific integrative approaches for common oncology side-effects such as fatigue. OUTCOME MEASURES: A mixed methods approach will be used to evaluate overall IOS Program progress and individual scholar's impact on IO research, education, and clinical endeavors. RESULTS: The first cohort of 25 IOS has been recruited and their education will begin in Summer 2018. Scholars come from 13 states and represent 23 different healthcare systems. CONCLUSIONS: The IOS Program has the potential to increase the number of trained IO providers, educators, and researchers in the United States.