Usability and Preliminary Efficacy of an Adaptive Supportive Care System for Patients With Cancer: Pilot Randomized Controlled Trial.

BACKGROUND: Using an iterative user-centered design process, our team developed a patient-centered adaptive supportive care system, PatientCareAnywhere, that provides comprehensive biopsychosocial screening and supportive cancer care to patients across the continuum of care adaptively. The overarching goal of PatientCareAnywhere is to improve health-related quality of life (HRQOL) and self-efficacy of patients with cancer by empowering them with self-management skills and bringing cancer care support directly to them at home. Such support is adaptive to the patient's needs and health status and coordinated across multiple sources in the forms of referrals, education, engagement of community resources, and secure social communication. OBJECTIVE: This study aims to assess the usability of the new web-based PatientCareAnywhere system and examine the preliminary efficacy of PatientCareAnywhere to improve patient-reported outcomes compared with usual care. METHODS: For phase 1, usability testing participants included patients with cancer (n=4) and caregivers (n=7) who evaluated the software prototype and provided qualitative (eg, interviews) and quantitative (eg, System Usability Scale) feedback. For phase 2, participants in the 3-month pilot randomized controlled trial were randomized to receive the PatientCareAnywhere intervention (n=36) or usual care control condition (n=36). HRQOL and cancer-relevant self-efficacy were assessed at baseline (preintervention assessment) and 12 weeks from baseline (postintervention assessment); mean differences between pre- and postintervention scores were compared between the 2 groups. RESULTS: Participants were highly satisfied with the prototype and reported above-average acceptable usability, with a mean System Usability Scale score of 84.09 (SD 10.02). Qualitative data supported the overall usability and perceived usefulness of the intervention, with a few design features (eg, "help request" function) added based on participant feedback. With regard to the randomized controlled trial, patients in the intervention group reported significant improvements in HRQOL from pre- to postintervention scores (mean difference 6.08, SD 15.26) compared with the control group (mean difference -2.95, SD 10.63; P=.01). In contrast, there was no significant between-group difference in self-efficacy (P=.09). CONCLUSIONS: Overall, PatientCareAnywhere represents a user-friendly, functional, and acceptable supportive care intervention with preliminary efficacy to improve HRQOL among patients diagnosed with cancer. Future studies are needed to further establish the efficacy of PatientCareAnywhere as well as explore strategies to enhance user engagement and investigate the optimal intensity, frequency, and use of the intervention to improve patient outcomes. TRIAL REGISTRATION: ClinicalTrials.gov NCT02408406; https://clinicaltrials.gov/study/NCT02408406.

From patient-reported outcomes (PROs) to family-reported outcomes (FROs): Acceptability and perceived usefulness of routine screening in cancer care.

OBJECTIVES: To explore the acceptability of screening for family-reported outcomes (FROs) among cancer caregivers (unpaid family members or friends who provide support to patients with cancer) and identify from their perspective the key components of a FRO screening program. METHODS: Using a qualitative descriptive design, semi-structured interviews were undertaken with 23 adult caregivers of people with cancer between 2020 and 2021. Interview questions focused on acceptability of FRO screening, types of FROs, timing/frequency of screening, preferred resources following screening, and communication of FROs to patients and clinicians. Participants were recruited in Canada. Interviews were audio-recorded, transcribed verbatim, and analyzed using thematic analysis and constant comparison. RESULTS: Almost all caregivers welcomed FRO screening in usual care and viewed it as an avenue toward obtaining more resources. Other potential benefits of FRO screening included increased self-reflection and role acknowledgment. Caregivers prioritized screening for emotional symptoms, and most preferred that the results be shared with the patient's treating team rather than their primary care provider. Caregivers did not want results to be shared with patients, instead favoring learning how best to discuss results with patients. Many spoke of a "one stop shop" containing all relevant information on caring for the patient (first) and for themselves (second). Opinions regarding timing and frequency of FRO screening differed. Periodic administration of FRO measures, with each one not exceeding 20 minutes, was deemed appropriate. SIGNIFICANCE OF RESULTS: This study extends the concept of patient-reported outcome measures to caregivers, and findings can be used to guide the development of FRO screening programs.

Dedicated financial hardship screening adds value to routine distress screening among gynecologic cancer patients.

OBJECTIVES: To evaluate existing distress screening to identify patients with financial hardship (FH) compared to dedicated FH screening and assess patient attitudes toward FH screening. METHODS: We screened gynecologic cancer patients starting a new line of therapy. Existing screening included: (1) Moderate/severe distress defined as Distress Thermometer score ≥ 4, (2) practical concerns identified from Problem Checklist, and (3) a single question assessing trouble paying for medications. FH screening included: (1) Comprehensive Score for Financial Toxicity (COST) tool and (2) 10-item Financial Needs Checklist to guide referrals. FH was defined as COST score < 26. We calculated sensitivity (patients with moderate/severe distress + FH over total patients with FH) and specificity (patients with no/mild distress + no FH over total patients with no FH) to assess the extent distress screening could capture FH. Surveys and exit interviews assessed patient perspectives toward screening. RESULTS: Of 364 patients screened for distress, average age was 62 years, 25% were Black, 45% were Medicare beneficiaries, 32% had moderate/severe distress, 15% reported ≥1 practical concern, and 0 reported trouble paying for medications. Most (n = 357, 98%) patients also completed FH screening: of them, 24% screened positive for FH, 32% reported ≥1 financial need. Distress screening had 57% sensitivity and 77% specificity for FH. Based on 79 surveys and 43 exit interviews, FH screening was acceptable with feedback to improve the timing and setting of screening. CONCLUSIONS: Dedicated FH screening was feasible and acceptable, but sensitivity was low. Importantly, 40% of women with FH would not have been identified with distress screening alone.

A randomized controlled trial of a distress screening, consultation, and targeted referral system for family caregivers in oncologic care.

OBJECTIVE: Distress screening is standard practice among oncology patients, yet few routine distress screening programs exist for cancer caregivers. The objective of this study was to demonstrate the feasibility, acceptability, and preliminary efficacy of Cancer Support Source-CaregiverTM (CSS-CG, 33-item), an electronic distress screening and automated referral program with a consultation (S + C) to improve caregiver unmet needs, quality of life, anxiety, depression, and distress relative to Enhanced Usual Care (EUC; access to educational materials). METHOD: 150 caregivers of patients with varying sites/stages of cancer were randomized to S + C or EUC and completed assessments at baseline, 3-months post-baseline, and 6-months post-baseline. A subset of participants (n = 10) completed in-depth qualitative interviews. RESULTS: S + C was feasible: among 75 caregivers randomized to S + C, 66 (88%) completed CSS-CG and consultation. Top concerns reported were: (1) patient's pain and/or physical discomfort; (2) patient's cancer progressing/recurring; and (3) feeling nervous or afraid. Differences between groups in improvements on outcomes by T2 and T3 were modest (ds < 0.53) in favor of S + C. Qualitative data underscored the helpfulness of S + C in connecting caregivers to support and helping them feel cared for and integrated into cancer care. CONCLUSIONS: S + C is feasible, acceptable, and yields more positive impact on emotional well-being than usual care. Future studies will examine programmatic impact among caregivers experiencing higher acuity of needs, and benefits of earlier integration of S + C on caregiver, patient, and healthcare system outcomes.

Implementing a nurse-led screening clinic for symptom distress with community-based referral for cancer survivors: A feasibility study.

INTRODUCTION: This prospective, single-arm, pragmatic implementation study evaluated the feasibility of a nurse-led symptom-screening program embedded in routine oncology post-treatment outpatient clinics by assessing (1) the acceptance rate for symptom distress screening (SDS), (2) the prevalence of SDS cases, (3) the acceptance rate for community-based psychosocial support services, and (4) the effect of referred psychosocial support services on reducing symptom distress. METHODS: Using the modified Edmonton Symptom Assessment System (ESAS-r), we screened patients who recently completed cancer treatment. Patients screening positive for moderate-to-severe symptom distress were referred to a nurse-led community-based symptom-management program involving stepped-care symptom/psychosocial management interventions using a pre-defined triage system. Reassessments were conducted at 3-months and 9-months thereafter. The primary outcomes included SDS acceptance rate, SDS case prevalence, intervention acceptance rate, and ESAS-r score change over time. RESULTS: Overall, 2988/3742(80%) eligible patients consented to SDS, with 970(32%) reporting ≥1 ESAS-r symptom as moderate-to-severe (caseness). All cases received psychoeducational material, 673/970(69%) accepted psychosocial support service referrals. Among 328 patients completing both reassessments, ESAS-r scores improved significantly over time (p < 0.0001); 101(30.8%) of patients remained ESAS cases throughout the study, 112(34.1%) recovered at 3-month post-baseline, an additional 72(22%) recovered at 9-month post-baseline, while 43(12.2%) had resumed ESAS caseness at 9-month post-baseline. CONCLUSION: Nurse-led SDS programs with well-structured referral pathways to community-based services and continued monitoring are feasible and acceptable in cancer patients and may help in reducing symptom distress. We intend next to develop optimal strategies for SDS implementation and referral within routine cancer care services.

Predictive Factors Associated with Declining Psycho-Oncological Support in Patients with Cancer.

(1) Background: International cancer treatment guidelines recommend low-threshold psycho-oncological support based on nurses' routine distress screening (e.g., via the distress thermometer and problem list). This study aims to explore factors which are associated with declining psycho-oncological support in order to increase nurses' efficiency in screening patients for psycho-oncological support needs. (2) Methods: Using machine learning, routinely recorded clinical data from 4064 patients was analyzed for predictors of patients declining psycho-oncological support. Cross validation and nested resampling were used to guard against model overfitting. (3) Results: The developed model detects patients who decline psycho-oncological support with a sensitivity of 89% (area under the cure of 79%, accuracy of 68.5%). Overall, older patients, patients with a lower score on the distress thermometer, fewer comorbidities, few physical problems, and those who do not feel sad, afraid, or worried refused psycho-oncological support. (4) Conclusions: Thus, current screening procedures seem worthy to be part of daily nursing routines in oncology, but nurses may need more time and training to rule out misconceptions of patients on psycho-oncological support.

Diving deeper into distress screening implementation in oncology care.

BACKGROUND: Responding to calls for additional research that identifies effective distress screening (DS) processes, including referral practices subsequent to screening and receipt of recommended care, we engaged in qualitative research as part of a larger (mixed methods) study of distress screening. This qualitative inquiry of oncology professionals across different facilities in the United States examined routine DS implementation, facilitators and challenges staff encounter with DS processes, and staff members' perceived value of DS. PARTICIPANTS AND METHODS: We conducted key informant interviews and focus groups with staff in 4 Commission on Cancer (CoC)-accredited oncology facilities (a total of 18 participants) to understand implementation of routine DS within oncology care. We used a rigorous data analysis design, including inductive and deductive approaches. RESULTS: Respondents believe DS enhances patient care and described ways to improve DS processes, including administering DS at multiple points throughout oncology care, using patient-administrated DS methods, and enhancing electronic health records infrastructure to better collect, record, and retrieve DS data. Respondents also identified the need for additional psychosocial staff at their facilities to provide timely psychosocial care. CONCLUSIONS: Results reinforce the value of DS in cancer care, including the importance of follow-up to screening with psychosocial oncology providers. Understanding and resolving the barriers and facilitators to implementing DS are important to ensure appropriate psychosocial care for people with cancer. Insights from oncology staff may be used to enhance the quality of DS and subsequent psychosocial care, which is an essential component of oncology care.

A mixed-methods study to inform development of a caregiver-specific problem list for cancer distress screening.

OBJECTIVE: Oncology guidelines for distress management recommend use of the single-item distress thermometer (DT) and accompanying Problem List (PL) to identify patients with high distress levels and their potential sources of distress. However, oncology practices have yet to establish standardized protocols to screen and triage caregivers with high distress levels. With an eye toward integrating caregiver-centered support services into cancer care, this mixed-methods study sought to assess caregiver distress and challenges that may contribute to their distress. METHODS: Nineteen caregivers of metastatic breast cancer patients (60% female, 47% ethnic/racial minority) completed an interview and a survey comprised of the DT, the original 39-item PL, and five additional caregiver-specific PL items. RESULTS: Caregivers reported moderate distress levels and more than half exceeded the National Comprehensive Cancer Network (NCCN) cut-off, denoting significant distress. There was no association between caregiver distress and the number of items endorsed on the original PL. Qualitative analysis identified nine problem domains as areas of caregiver unmet need needs (i.e., practical challenges, caregiving responsibilities, social/relationship issues, caregiver and patient emotional well-being, caregiver and patient physical well-being, spiritual well-being, and communication). Two of the problem domains (caregiving responsibilities and communication) were not captured in any way by the original PL. CONCLUSION: With further research and development, the identified domains could serve as the basis for a caregiver-specific PL to facilitate triage and referral when incorporated as part of routine distress screening.

A short screening tool identifying systemic barriers to distress screening in cancer care.

INTRODUCTION: International guidelines on cancer treatment recommend screening for early detection and treatment of distress. However, screening rates are insufficient. In the present study, a survey was developed to assess perceived systemic barriers to distress screening. METHODS: A three-step approach was used for the study. Based on qualitative content analysis of interviews and an expert panel, an initial survey with 53 questions on barriers to screening was designed. It was completed by 98 nurses in a large comprehensive cancer center in Switzerland. From this, a short version of the survey with 24 questions was derived using exploratory principal component analysis. This survey was completed by 150 nurses in four cancer centers in Switzerland. A confirmatory factor analysis was then performed on the shortened version, yielding a final set of 14 questions. RESULTS: The initial set of 53 questions was reduced to a set of 14 validated questions retaining 53% of the original variance. These 14 questions allow for an assessment within 2-3 min that identifies relevant barriers to distress screening from the perspective of those responsible for implementation of distress screening. Across several hospitals in Switzerland, the timing of the first distress screening, lack of capacity, patient and staff overload, and refusal of distressed patients to be referred to support services emerged as major problems. CONCLUSION: The validated 14 questions on barriers to screening cancer patients for distress enable clinicians and hospital administrators to quickly identify relevant issues and take action to improve screening programs.

Implementing process improvements to enhance distress screening and management.

INTRODUCTION: While distress is prevalent among individuals living with cancer, distress management has not been optimized across cancer care delivery despite standards for screening. This manuscript describes the development of an enhanced Distress Thermometer (eDT) and shares the process for deploying the (eDT) across a cancer institute by highlighting improvements at the provider, system, and clinic levels. METHODS: Focus groups and surveys were used at the provider-level to outline the problem space and to identify solutions to improve distress screening and management. Through stakeholder engagement, an eDT was developed and rolled out across the cancer institute. Technical EHR infrastructure changes were implemented at the system-level to improve the use of the distress screening findings and generate automated referrals for specialty services. Clinic workflows were adapted to improve screening and distress management using the eDT. RESULTS: Stakeholder focus group participants (n=17) and survey respondents (n=13) found the eDT to be feasible and acceptable for distress identification and management. System-level technical EHR changes resulted in high accuracy with patient identification for distress management, and 100% of patients with moderate to severe distress were connected directly to an appropriate specialty provider. Clinic-level workflow changes to expand eDT use improved compliance rates with distress screening from 85% to 96% over a 1-year period. CONCLUSIONS: An eDT that provides more context to patient-reported problems improved identification of referral pathways for patients experiencing moderate to high distress during cancer treatment. Combining process improvement interventions across multiple levels in the cancer care delivery system enhanced the success of this project. These processes and tools could support improved distress screening and management across cancer care delivery settings.

Checking IN: Development, Acceptability, and Feasibility of a Pediatric Electronic Distress Screener.

Objective: Chronic illness in children and adolescents is associated with significant stress and risk of psychosocial problems. In busy pediatric clinics, limited time and resources are significant barriers to providing mental health assessment for every child. A brief, real-time self-report measure of psychosocial problems is needed. Methods: An electronic distress screening tool, Checking IN, for ages 8-21 was developed in 3 phases. Phase I used semi-structured cognitive interviews (N = 47) to test the wording of items assessing emotional, physical, social, practical, and spiritual concerns of pediatric patients. Findings informed the development of the final measure and an electronic platform (Phase II). Phase III used semi-structured interviews (N = 134) to assess child, caregiver and researcher perception of the feasibility, acceptability, and barriers of administering Checking IN in the outpatient setting at 4 sites. Results: Most patients and caregivers rated Checking IN as "easy" or "very easy" to complete, "feasible" or "somewhat feasible," and the time to complete the measure as acceptable. Most providers (n = 68) reported Checking IN elicited clinically useful and novel information. Fifty-four percent changed care for their patient based on the results. Conclusions: Checking IN is a versatile and brief distress screener that is acceptable to youth with chronic illness and feasible to administer. The summary report provides immediate clinically meaningful data. Electronic tools like Checking IN can capture a child's current psychosocial wellbeing in a standardized, consistent, and useful way, while allowing for the automation of triaging referrals and psychosocial documentation during outpatient visits.

Implementing an Inclusive, Multidisciplinary Supportive Care Model to Provide Integrated Care to Breast and Gynaecological Cancer Survivors: A Case Study at an Asian Ambulatory Cancer Centre.

Introduction: Supportive care models considering inclusivity and community services to improve integrated care for cancer survivors are limited. In this case study, we described the implementation of a multidisciplinary care model employing routine distress screening and embedded integrated care pathways to integrate care across disciplines and care sectors, while remaining inclusive of the multi-ethnic and multilingual population in Singapore. We reported implementation outcomes after 18 months of implementation. Description: We reviewed the model's process indicators from September 2019 to February 2021 at the largest public ambulatory cancer centre. Outcomes assessed included penetration, fidelity to screening protocol, and feasibility in three aspects - inclusiveness of different ethnic and language groups, responsiveness to survivors reporting high distress, and types of community service referrals. Discussion/conclusion: We elucidated opportunities to promote access to community services and inclusivity. Integration of community services from tertiary settings should be systematic through mutually beneficial educational and outreach initiatives, complemented by their inclusion in integrated care pathways to encourage systematic referrals and care coordination. A hybrid approach to service delivery is crucial in ensuring inclusivity while providing flexibility towards external changes such as the COVID-19 pandemic. Future work should explore using telehealth to bolster inclusiveness and advance community care integration.

[Cancer medicine in a state of flux - Where does psycho-oncology stand? : New challenges for cancer patients and treating physicians]. / Krebsmedizin im Wandel ­ Wo steht die Psychoonkologie? : Neue Herausforderungen für Krebspatienten und Behandler.

Despite significantly improved supportive measures, oncological treatment is still exhausting and is accompanied by organ loss, disability and functional limitations. In the longer term those affected have to cope with the loss of important life commodities and after the end of treatment to live under the much-cited "sword of Damocles". Around one third of all people diagnosed with cancer develop a mental disorder at some point during the course of the illness that requires treatment and pronounced stress reactions occur at key points over the course of treatment. Both mental disorders and subsyndromic distress can be successfully treated with psychotherapeutic and psycho-oncological interventions. Therefore, every cancer patient should be informed about the availability and potential benefit of psycho-oncological support after the diagnosis or in the further course of treatment.

Oncology distress screening within predominately Black Veterans: Outcomes on supportive care utilization, hospitalizations, and mortality.

BACKGROUND: We evaluated whether patients' initial screening symptoms were related to subsequent utilization of supportive care services and hospitalizations, and whether patient-level demographics, symptoms, hospitalizations, and supportive care service utilization were associated with mortality in primarily low-income, older, Black Veterans with cancer. METHODS: This quality improvement project created collaborative clinics to conduct cancer distress screenings and refer to supportive care services at an urban, VA medical center. All patients completed a distress screen with follow-up screening every 3 months. Supportive care utilization, hospitalization rates, and mortality were abstracted through medical records. Poisson regression models and cox proportional hazard models were utilized. RESULTS: Five hundred and eighty five screened patients were older (m = 72), mostly Black 70% (n = 412), and had advanced cancer 54%. Fifty-eight percent (n = 340) were screened only once with 81% (n = 470) receiving ≥1 supportive care service and 51.5% (n = 297) being hospitalized ≥1 time 18 months following initial screen. Symptom severity was significantly related to number of hospitalizations. Low mood was significantly related to higher supportive services (p < 0.001), but not hospitalizations (p ≥ 0.52). Pain, fatigue, physical function, nutrition, and physical symptoms were significantly associated with more supportive services and hospitalizations (p < 0.01). Twenty percent (n = 168) died; Veterans who were Black, had lower stage cancers, better physical health, and utilized less supportive care services had lower odds of mortality (p ≤ 0.01). CONCLUSION: Individuals with elevated distress needs and those reporting lower physical function utilized more supportive care services and had higher hospitalization rates. Lower physical function, greater supportive care use, higher stage cancer, and being non-Black were associated with higher odds of death.

Screening for Distress and Health Outcomes in Head and Neck Cancer.

Head and neck cancers (HNC) have higher rates of emotional distress than other cancer types and the general population. This paper compares the prevalence of emotional distress in HNC across various distress screening measures and examines whether significant distress or distress screening are associated with cancer-related survival. A retrospective observational cohort design was employed, with data collected from the Distress Assessment and Response Tool (DART) and linkages to administrative databases from 2010 to 2016. Descriptive and prevalence data were reported using multiple concurrently administered distress tools, including the Patient Health Questionaire-9 (PHQ-9), Generalized Anxiety Disorders-7 (GAD-7), Edmonton Symptom Assessment Scale-revised (ESAS-r), and MD Anderson Symptom Index-Head and Neck module (MDASI-HN). Across measures, 7.8 to 28.1% of the sample reported clinically significant emotional distress, with PHQ-9 and GAD-7 identifying lowest prevalence of moderate/severe distress, and the ultrashort distress screens within ESAS-r and MDASI-HN performing equivalently. Cox hazards models were used in univariate and multivariate survival analyses. ESAS depression (≥4), but not anxiety, was associated with increased risk of cancer-related mortality and patient completion of DART was associated with greater cancer-related survival. The findings underscore the importance of implementing routine distress screening for HNC populations and the utility of ultra-brief screening measures.

"I Want to Help Others Like Me": A Pilot Qualitative Study on Patients' Participation in a Screening for Distress Program.

Screening for distress was implemented in our academic hospital with the engagement of patients as partners. Little is known about how they appreciate such participation. This pilot qualitative study aimed to explore their experience. Six participants completed a semi-structured interview, which was transcribed verbatim. Thematic analysis was performed on the transcripts. Four themes emerged: "opinions about their participation", "working with others", "role of patient partners", and "barriers encountered". Mean global satisfaction reported on a Likert scale reached 8.92 over 10. Our preliminary findings suggest that patients-as-partners appreciated their participation, and also identified barriers that should be explored in future quality improvement (QI) projects.

Designing a Framework for Remote Cancer Care Through Community Co-design: Participatory Development Study.

BACKGROUND: Recent shifts to telemedicine and remote patient monitoring demonstrate the potential for new technology to transform health systems; yet, methods to design for inclusion and resilience are lacking. OBJECTIVE: The aim of this study is to design and implement a participatory framework to produce effective health care solutions through co-design with diverse stakeholders. METHODS: We developed a design framework to cocreate solutions to locally prioritized health and communication problems focused on cancer care. The framework is premised on the framing and discovery of problems through community engagement and lead-user innovation with the hypothesis that diversity and inclusion in the co-design process generate more innovative and resilient solutions. Discovery, design, and development were implemented through structured phases with design studios at various locations in urban and rural Kentucky, including Appalachia, each building from prior work. In the final design studio, working prototypes were developed and tested. Outputs were assessed using the System Usability Scale as well as semistructured user feedback. RESULTS: We co-designed, developed, and tested a mobile app (myPath) and service model for distress surveillance and cancer care coordination following the LAUNCH (Linking and Amplifying User-Centered Networks through Connected Health) framework. The problem of awareness, navigation, and communication through cancer care was selected by the community after framing areas for opportunity based on significant geographic disparities in cancer and health burden resource and broadband access. The codeveloped digital myPath app showed the highest perceived combined usability (mean 81.9, SD 15.2) compared with the current gold standard of distress management for patients with cancer, the paper-based National Comprehensive Cancer Network Distress Thermometer (mean 74.2, SD 15.8). Testing of the System Usability Scale subscales showed that the myPath app had significantly better usability than the paper Distress Thermometer (t63=2.611; P=.01), whereas learnability did not differ between the instruments (t63=-0.311; P=.76). Notable differences by patient and provider scoring and feedback were found. CONCLUSIONS: Participatory problem definition and community-based co-design, design-with methods, may produce more acceptable and effective solutions than traditional design-for approaches.

Psychosocial distress is dynamic across the spectrum of cancer care and requires longitudinal screening for patient-centered care.

PURPOSE: Screening for cancer-related psychosocial distress is recommended for patients with cancer; however, data on the long-term prevalence of distress and its natural history in survivors are scarce, preventing recommendations for screening frequency and duration. We sought to evaluate longitudinal distress in cancer patients. METHODS: We evaluated longitudinal distress screening data for patients with cancer treated or surveilled at our institution from 2010 to 2018. Anxiety, depression, insurance/financial, family, memory, and strength-related distress were separately assessed and analyzed. Multivariable logistic regression was utilized to evaluate factors associated with distress subtypes. RESULTS: In 5660 patients, distress was the highest at diagnosis for anxiety, depression, financial, and overall distress. On multivariable analysis, factors independently associated with distress at diagnosis included younger age, female gender, disease site/stage, payor, and income, varying by subtype-specific analyses. Severe distress in at least one subtype persisted in over 30% of survivors surveyed through 10 years after diagnosis. Over half of patients with initially severe distress at diagnosis improved within 12 months; however, distress worsened in 20-30% of patients with moderate, low, and no initial distress, regardless of the distress subtype. CONCLUSION: Psychosocial distress in cancer survivors is a long-lasting burden with implications for quality of life and oncologic outcomes. Severe distress remains prevalent through 10 years after diagnosis in survivors receiving continued care at cancer centers and results from both persistent and new sources of distress in a variety of psychosocial domains. Longitudinal distress screening is an invaluable tool for providing comprehensive patient-centered cancer care and is recommended to detect new or recurrent distress in cancer survivors.

Examination of a distress screening intervention for rural cancer survivors reveals low uptake of psychosocial referrals.

PURPOSE: To determine the impact of a telemedicine-delivered intervention aimed at identifying unmet needs and cancer-related distress (CRD) following the end of active treatment on supportive care referral patterns. METHODS: We used a quasi-experimental design to compare supportive care referral patterns between a group of rural cancer survivors receiving the intervention and a control group (N = 60). We evaluated the impact of the intervention on the number and type of referrals offered and whether or not the participant accepted the referral. CRD was measured using a modified version of the National Comprehensive Cancer Network Distress Thermometer and Problem List. RESULTS: Overall, 30% of participants received a referral for further post-treatment supportive care. Supporting the benefits of the intervention, the odds of being offered a referral were 13 times higher for those who received the intervention than those in the control group. However, even among the intervention group, only 28.6% of participants who were offered a referral for further psychosocial care accepted. CONCLUSIONS: A nursing telemedicine visit was successful in identifying areas of high distress and increasing referrals. However, referral uptake was low, particularly for psychosocial support. Distance to care and stigma associated with seeking psychosocial care may be factors. Further study to improve referral uptake is warranted. IMPLICATIONS FOR CANCER SURVIVORS: Screening for CRD may be inadequate for cancer survivors unless patients can be successfully referred to further supportive care. Strategies to improve uptake of psychosocial referrals is of high importance for rural survivors, who are at higher risk of CRD.