Patient-reported Distress Research Articles

Disparities in patient-reported distress in head and neck cancer.

257 Background: Distress is common among cancer patients, and impacts morbidity and mortality. Head and neck cancer (HNC) is considered one of the most emotionally distressing of all cancers, and given the stark racial disparities in HNC outcomes, we sought to examine racial and sociodemographic factors associated with clinically meaningful distress in a cohort of patients with HNC. Methods: We built a retrospective cohort of patients at a semi-urban, academic, National Cancer Institute (NCI)-designated comprehensive cancer center in the Southeastern United States. Cohort included patients with a diagnosis of HNC who received care from the Radiation Oncology department 5 weeks or less of initial diagnosis, from 2017 to 2022. Outcome of interest was clinically meaningful distress, a binary variable defined as a score of ≥4 on the distress thermometer (DT), a validated tool measuring distress, with scores ranging from 0-10. Main independent variables were sociodemographic factors (race/ethnicity, age, sex, marital status, and health insurance status). We further adjusted for clinical variables (stage of presentation, anatomical subsites, smoking and alcohol history), and problem list domain items. Using chi-square tests and multinomial regression analysis, we estimated differences in distress and odds of meaningful distress by sociodemographic factors, adjusting for clinical factors and problem list domains. Results: From a primary sample of 1,167 patients, 507 patients met our inclusion criteria. Nearly half (45.8%) of our sample had clinically meaningful distress, with a median DT score of 3 (IQR, 0-6). Total number of problem list items and physical concerns showed significant racial differences ( p < 0.05); however, in our final models, race was not significantly associated with clinically meaningful distress. Compared to those unmarried, married patients were significantly less likely to report distress (aOR = 0.62; 95% CI: 0.40, 0.95). Also, patients with emotional problems had double the odds of reporting clinically meaningful distress (aOR = 2.03; 95% CI: 1.02, 4.08). Other factors associated with significant clinical distress included tobacco history, and reported practical problems. Conclusions: Marital status and reported emotional problems are significantly associated with clinically meaningful distress in patients with HNC. Our study underscores the need for social support in mitigating distress and optimizing mental healthcare in our patient population. Further studies will explore distress trajectories across the HNC continuum and impact on HNC outcomes.

Abstract B141 Self-reported distress in multiple myeloma patients at first consultation at a transplant referral center

Abstract The National Comprehensive Cancer Network (NCCN) recommends screening all cancer patients for distress to facilitate psychosocial support and referrals. This distress is associated with treatment delays and other obstacles that may affect patient outcomes. The prevalence of distress in patients with multiple myeloma (MM) and its variation among underrepresented minorities and vulnerable groups is unknown. We hypothesized that patients with advanced disease, racial minorities, and vulnerable individuals would report higher distress levels. New patients with MM seen between 1/1/2015-12/31/2022 at a tertiary medical center were identified. All patients receive the NCCN Distress Thermometer (DT) survey for completion at initial consultation as standard of care. Baseline characteristics of patients who completed the survey were compared with those of patients who did not. Among those with survey data, DT score was categorized as <4 (low), 4–6 (moderate), and >6 (high). DT score was analyzed by sociodemographic and disease-related factors. The 2020 Social Vulnerability Index (SVI) at the county level was calculated using Zip codes and categorized as less vulnerable (score <50) or more vulnerable (>=50). Of 1,011 new MM patient consultations, 683 patients had an available DT survey at initial consultation. In patients without the survey (N=328), a higher proportion was older than 75 years (21% vs 16% P=0.04), non-Hispanic Black (NHB) [22% vs. 9%, P<0.01], and with more advanced disease (ISS III 20% vs 14%, P<0.01). There was lower autologous stem cell transplant utilization in the group with missing survey data (71% vs 79%, P<0.01). Among those with DT survey, younger age, female sex, advanced stage, and shorter time from diagnosis to consult was associated with higher distress. In patients with DT survey data and SVI (N=683), the mean SVI was 0.37 (std dev 0.31) and 166 (28%) had more vulnerability. Younger age and NHB race were associated with more vulnerability. The more vulnerable group also had a shorter time from diagnosis to consult (1.2 vs 1.8 months, P<0.01). In the more vulnerable group, high DT score was seen with younger age and NHB race. There was no difference in transplant utilization by SVI group. No significant differences were found in the proportion of patients reporting concerns for physical, practical, emotional, social concerns by vulnerability. In this tertiary referral center study, we observed the greatest disparity by the completion of the NCCN DT survey highlighting a missed opportunity to identify individuals who may benefit from additional services. Among those who completed the survey, patient-reported distress was influenced by age, sex, and MM stage. Younger age was associated with more vulnerability. This may be due to minority status as a theme in the SVI calculator and the known association of younger age at MM onset in NHB individuals. Next steps including an adjusted analysis will be shown in the final presentation. Citation Format: Noel Estrada-Merly, James F Wu, Anita D'Souza. Self-reported distress in multiple myeloma patients at first consultation at a transplant referral center [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr B141.

Measuring patient-reported distress from breast magnetic resonance imaging: Development and validation of the MRI-related distress scale (MRI-DS).

Although breast magnetic resonance imaging (MRI) is a valuable screening tool, breast MRI testing burden was associated with cancer worry and quality of life. We aimed to develop and validate the MRI-related distress scale (MRI-DS) to assess comprehensive distress specifically related to breast MRI. We enrolled women aged above 18 years, diagnosed breast cancer, had MRI examination at least one time, and who could speak and read Korean in phase I and enrolled women aged above 18 years, visited outpatient clinic of breast general surgery, had undergone MRI examination at least once, and could speak and read Korean in phase II. We excluded patients who had any physical or psychiatric conditions in both phases. We recruited from a tertiary university-based hospital in South Korea between April and August 2023. All 18 items had acceptable levels of item correlation (≥0.30) in the explanatory factor analysis with a four-factor solution. The fit indices for the four-factor solution model were good. The discriminant validity of the MRI-DS had a moderate correlation with general anxiety or quality of life. In the known-group analysis, those who reported MRI as the most burden breast examination had higher total scores. The validity of the MRI-DS has been confirmed as a scale for measuring the specific distress caused by breast MRI. The MRI-DS is recommended to health professional to communicate with patients with MRI. It can be used to assess the distress associated with MRI screening in breast cancer patients. Physician could use MRI-DS to discuss the reasons for distress caused by breast MRI screening and to address specific sources of discomfort associated with it.

Bowel Dysfunction After Colon Cancer Surgery: A Prospective, Longitudinal, Multicenter Study.

Longitudinal studies on functional outcomes after colon resection are limited. To evaluate bowel dysfunction and related distress 1 and 3 years after colon resection using the low anterior resection syndrome score as well as specific validated items. This study presents the long-term results of bowel dysfunction and related distress based on the Quality of Life in Colon Cancer study, an observational, prospective multicenter study of patients with newly diagnosed colon cancer. The study was conducted at 21 Swedish and Danish surgical centers between 2015 and 2019. All patients who underwent right-sided or left-sided colon resection were considered eligible. Exclusion criteria were age younger than 18 years, cognitive impairment, or inability to understand Swedish/Danish. Patients completed extensive questionnaires at diagnosis and after 1 and 3 years. Clinical data were supplemented by national quality registries. The low anterior resection syndrome score, specific bowel symptoms, and patient-reported distress were assessed. Of 1221 patients (83% response rate), 17% reported major low anterior resection syndrome 1 year after either type of resection; this finding was consistent at 3 years (17% right, 16% left). In the long-term, the only significant difference between types of resections was a high occurrence of loose stools after right-sided resections. Overall, less than one-fifth of patients experienced distress, with women reporting more frequent symptoms and greater distress. In particular, incontinence and loose stools correlated strongly with distress. Absence of prediagnosis bowel function data. Our study indicates that bowel function remains largely intact after colon resection, with only a minority reporting significant distress. Adverse outcomes were more common among women. The occurrence of loose stools after right-sided resection and the association between incontinence, loose stools, and distress highlights a need for postoperative evaluations and more thorough assessments beyond the low anterior resection syndrome score when evaluating patients with colon cancer. See the Video Abstract . ANTECEDENTES:Los estudios longitudinales sobre el resultado funcional después de una resección cólica son limitados.OBJETIVO:Examinar la disfunción intestinal y el malestar relacionado uno y tres años después de la resección del colon utilizando la puntuación de referencia en el síndrome de resección anterior baja (LARS), así como otros ítems de validez específica.DISEÑO:Este estudio presenta los resultados a largo plazo de la disfunción intestinal y la angustia relacionada según el estudio QoLiCOL (Quality of Life in COLon cancer), un analisis observacional, prospectivo y multicéntrico de pacientes con cáncer de colon recién diagnosticado.AJUSTES:El presente estudio fué realizado en 21 centros quirúrgicos suecos y daneses entre 2015 y 2019.PACIENTES:Todos los pacientes sometidos a resección de colon, tanto del lado derecho como el izquierdo se consideraron elegibles. Los criterios de exclusión fueron tener menos de 18 años, deterioro cognitivo o incapacidad para entender sueco/danés. Los pacientes completaron extensos cuestionarios en el momento del diagnóstico y después de uno y tres años. Los datos clínicos se complementaron con los registros de calidad binacionales.PRINCIPALES MEDIDAS DE RESULTADO:Se evaluaron los síntomas intestinales específicos, la puntuación LARS y la angustia manifestada por cada paciente.RESULTADOS:De 1221 pacientes (tasa de respuesta del 83%), el 17% informó LARS mayor un año después de cualquier tipo de resección, consistente a los tres años (17% derecha, 16% izquierda). A largo plazo, la única diferencia significativa entre los tipos de resección fue una alta incidencia de heces liquidas después de las resecciones del lado derecho. En general, menos de una quinta parte de los pacientes experimentaron angustia, y fué la poblacion femenina quién informó de síntomas más frecuentes y de mayor angustia. En particular, la incontinencia y las heces liquidas se correlacionaron fuertemente con la angustia.LIMITACIONES:Ausencia de datos de función intestinal previos al diagnóstico.CONCLUSIONES:Nuestro estudio indica que la función intestinal permanece en gran medida intacta después de la resección del colon, y sólo una minoría reporta malestar significativo. Los resultados adversos fueron más comunes en la población femenina. La aparición de heces liquidas después de la resección del lado derecho y la asociación entre incontinencia, heces liquidas y malestar resalta la necesidad de evaluaciones postoperatorias y valoraciones más exhaustivas más allá de la puntuación LARS al evaluar a los pacientes con cáncer de colon. (Traducción-Dr. Xavier Delgadillo ).

Patient-Reported Distress and Acute Care Utilization for Cervical Cancer Patients Undergoing Concurrent Chemoradiation

Although concurrent chemo-radiation (CRT) and brachytherapy (BT) is curative for locally advanced cervical cancer (LACC), it requires complex coordination of care and is associated with treatment-related toxicity. Our objective was to evaluate patient-reported symptoms and social distress in LACC patients undergoing concurrent CRT and BT to determine whether they are predictive of unplanned acute care utilization. Patients with LACC treated with concurrent CRT and BT between 2013-2020 completed the Edmonton Symptom Assessment Scale-revised (ESAS-r; 9 cancer-related symptoms ranked 0-10) and the Social Difficulties Inventory-21 (SDI-21; 21 social issues ranked 0-3) at every visit as part of routine distress screening. Acute care utilization was defined as any unplanned visit to the radiation nursing clinic, urgent care clinic, emergency department or hospitalization within 1 year from starting treatment. A logistic regression model will be used to evaluate associations between ESAS-r and SDI-21 scores and acute care utilization. Among 151 LACC patients, a total of 354 ESAS-r and SDI questionnaires were completed longitudinally. Mean age at diagnosis was 49.9 years (30-90), 44% were FIGO 2B and overall treatment time was 53.6 days (32-135). At baseline, the most prevalent moderate to severe symptoms (ESAS-r score ≥4) were well-being (50%), anxiety (44%), tiredness (43%) and pain (36%). Post-treatment, these persisted in 42%, 27%, 38%, and 26%, respectively. The most common social distress at baseline was financial (33%). Financial distress post-treatment was significantly predictive of worse well-being (OR = 5.80, p<0.06), anxiety (OR = 3.33, p<0.04) and depression (OR = 4.76, p<0.01). Use of acute care within 1 year after starting treatment occurred in 103 patients (68%) for a total of 617 visits: radiation nursing clinic 71.3%, urgent care clinic 4.4%, emergency department 8.3%, hospitalization 16%. On average there were 6.6 visits/patient (0-31), with the average number of days between treatment start and first acute care visit being 17.9 (0-74). Cervical cancer patients undergoing concurrent CRT report prevalent financial distress and moderate to severe symptoms that persist post-treatment. Acute care utilization commonly occurred during treatment, highlighting a time when additional support is needed. Predictive modelling for distress factors resulting in acute care utilization is now underway.

142 Patient-Reported Distress and Acute Care Utilization for Cervical Cancer Patients Undergoing Concurrent Chemo-Radiation and Brachytherapy

142 Patient-Reported Distress and Acute Care Utilization for Cervical Cancer Patients Undergoing Concurrent Chemo-Radiation and Brachytherapy

Patient-reported distress at a cancer center during the COVID-19 pandemic

Assessments of health-related quality of life (HRQOL) are conducted by health systems to improve patient-centered care. Studies have shown that the COVID-19 pandemic poses unique stressors for patients with cancer. This study investigates change in self-reported global health scores in patients with cancer before and during the COVID-19 pandemic. In this single-institution retrospective cohort study, patients who completed the Patient-Reported Outcomes Measurement Information System (PROMIS) at a comprehensive cancer center before and during the COVID-19 pandemic were identified. Surveys were analyzed to assess change in the global mental health (GMH) and global physical health (GPH) scores at different time periods (pre-COVID: 3/1/5/2019–3/15/2020, surge1: 6/17/2020–9/7/2020, valley1: 9/8/2020–11/16/2020, surge2: 11/17/2020–3/2/2021, and valley2: 3/3/2021–6/15/2021). A total of 25,192 surveys among 7209 patients were included in the study. Mean GMH score for patients before the COVID-19 pandemic (50.57) was similar to those during various periods during the pandemic: surge1 (48.82), valley1 (48.93), surge2 (48.68), valley2 (49.19). Mean GPH score was significantly higher pre-COVID (42.46) than during surge1 (36.88), valley1 (36.90), surge2 (37.33) and valley2 (37.14). During the pandemic, mean GMH (49.00) and GPH (37.37) scores obtained through in-person were similar to mean GMH (48.53) and GPH (36.94) scores obtained through telehealth. At this comprehensive cancer center, patients with cancer reported stable mental health and deteriorating physical health during the COVID-19 pandemic as indicated by the PROMIS survey. Modality of the survey (in-person versus telehealth) did not affect scores.

Are Diagnostic Delays Associated with Distress in Breast Cancer Patients?

Introduction: Receiving a new breast cancer diagnosis can cause anxiety and distress, which can lead to psychologic morbidity, decreased treatment adherence, and worse clinical outcomes. Understanding sources of distress is crucial in providing comprehensive care. This study aims to evaluate the relationship between delays in breast cancer diagnosis and patient-reported distress. Secondary outcomes include assessing patient characteristics associated with delay. Methods: Newly diagnosed breast cancer patients who completed a distress screening tool at their initial evaluation at an academic institution between 2014 and 2019 were retrospectively evaluated. The tool captured distress levels in the emotional, social, health, and practical domains with scores of “high distress” defined by current clinical practice guidelines. Delay from mammogram to biopsy, whether diagnostic or screening mammogram, was defined as >30 days. Result: 745 newly diagnosed breast cancer patients met inclusion criteria. Median time from abnormal mammogram to core biopsy was 12 days, and 11% of patients experienced a delay in diagnosis. The non-delayed group had higher emotional (p = 0.04) and health (p = 0.03) distress than the delayed group. No statistically significant differences in social distress were found between groups. Additionally, patients with higher practical distress had longer time interval between mammogram and surgical intervention compared to those with lower practical distress. Older age, diagnoses of invasive lobular carcinoma or ductal carcinoma in situ, and clinical anatomic stages 0-I were associated with diagnostic delay. Conclusion: Patients with higher emotional or health-related distress were more likely to have timely diagnoses of breast cancer, suggesting that patients with higher distress may seek healthcare interventions more promptly. Improved understanding of sources of distress will permit early intervention regarding the devastating impact of breast cancer diagnosis.

Patient-Reported Distress and Clinical Outcomes with Immuno-Oncology Agents in Metastatic Non-Small Cell Lung Cancer (mNSCLC): A Real-World Retrospective Cohort Study

ObjectivesThere are limited real-world data about patient-reported outcomes with immunotherapies (IO) in metastatic non-small cell lung cancer (mNSCLC). We describe patient-reported distress and clinical outcomes with IO-based treatments or cytotoxic chemotherapies (Chemo). MethodsWe conducted a single-institution retrospective chart review of adults with mNSCLC treated at Duke from 03/2015 to 06/2020. At each visit, patients self-reported their distress level and sources of distress using the NCCN Distress Thermometer (DT) and its 39-item Problem List. We abstracted demographic, clinical, distress, and investigator assessed-clinical response data, then analyzed these using descriptive statistics and generalized estimating equations. ResultsData from 152 patients were analyzed in four groups: Chemo alone, IO + Chemo, single agent IO, dual agent IO. Distress was worse before treatment start in all groups, and the odds of actionable distress (DT score > 4) decreased by 10 % per month. The most frequent sources of distress were physical symptoms (e.g., fatigue, pain), which remained high longitudinally. Patients receiving IO had higher clinical response rates and a lower rate of unplanned healthcare encounters compared to patients treated with Chemo alone. Only one-third of all patients were seen by palliative care. ConclusionsThis single-center, real-world evidence study demonstrates that patients with mNSCLC experience significant distress prior to starting first-line treatment. IO treatment was associated with higher clinical benefit rates and lower healthcare utilization compared to chemotherapy. Symptom distress persists over time, highlighting potential unmet palliative and supportive care needs in mNSCLC care in the IO treatment era.

Impact of Demographic Characteristics on Self-Reported Psychological Distress of Cancer Patients during the COVID-19 Pandemic

Purpose/Objective(s)To investigate how at-risk demographic features correlate with the perceived level of psychological distress in cancer patients actively receiving care during the COVID-19 pandemic.Materials/MethodsPatients treated with radiotherapy at a single academic cancer center were reviewed 3 months before (11/01/2019-03/16/2020) and during (03/17/2020- 2/01/2021) the COVID-19 pandemic. Patients who reported an NCCN distress score (range 0=no distress to 10=extreme distress) as a part of their radiation care were reviewed for inclusion. Variables of interest were extracted from the medical record including age, gender, ethnicity, and Karnofsky Performance Scale (KPS) score. Distress scores were recorded around the time of simulation or treatment start. The relationship between these variables and NCCN distress scores were assessed using univariate and multivariate linear regression.ResultsOf all the patients receiving active treatment during the study interval (n=3,129), a total of 2,012 patients reported distress scores and thus were included. Median pre-pandemic distress was 3 (Interquartile Range 0-5) compared to median score of 2 (IQR 0-4) during the pandemic. There was no change in pre- and during pandemic distress on subgroup analysis by age, gender, ethnicity, or KPS score. The following variables were significantly correlated with increased distress on univariate analysis: older age (beta-age = -0.0163 [95% CI: -0.0262 to -0.0063], female gender (OR = 2.43 [95% CI 1.88 to 3.03], race (“black” race OR = 2.77 [95% CI: 1.68 to 4.57] and “other” race OR 1.96 [95% CI: 1.34-2.83]) and lower KPS score (beta-KPS = -0.403 [95% CI: -0.509 to -0.298]. Multivariate analysis was used to test if these demographic features were correlated with psychological distress among all patients. The overall regression was statistically significant albeit with a small effect size (R2=0.0605, p < .0001). On multivariate analysis, the following variables remained significant: age (beta-age = -0.0145 [95% CI: -0.0266 to -0.00241]), KPS score (beta-KPS = -0.429 [95% CI: -0.561 to -0.297]), and female gender (OR = 1.88 [95% CI: 1.28-2.75]).ConclusionThe ongoing COVID-19 pandemic did not significantly affect patient-reported distress levels at the time of receiving cancer-directed therapy. Older age, female gender, and low KPS score were associated with higher psychological distress in cancer patients receiving radiotherapy. Current analysis reveals vulnerable populations of cancer patients may have higher risk of distress during radiotherapy. These populations would warrant additional surveillance during treatment and may benefit from additional psychosocial support.

Comparison of patient-reported distress during harm avoidance and incompleteness exposure tasks for youth with OCD

Exposure and response prevention is the front-line treatment for OCD, but many patients do not achieve symptom remission. Most theories of exposure mechanism suggest that eliciting and/or tolerating distress is necessary for exposure effectiveness. Moreover, research suggests that the type of distress may relate to treatment response, such that patients with “incompleteness” OCD symptom presentations exhibit poorer response than patients with “harm avoidance” symptom presentations. However, no studies have examined differences in distress during harm avoidance versus incompleteness exposure tasks. The current study examined differences in patient-reported distress during harm avoidance and incompleteness exposure tasks for 280 youth with severe OCD in a partial hospitalization program. Participants reported less distress and more often exhibited “flat,” unchanging distress trajectories during exposure tasks targeting incompleteness compared to harm avoidance. Findings provide preliminary evidence of differences in emotional processes during harm avoidance versus incompleteness exposure tasks for youth with OCD.

Patient-reported distress and problems among elderly patients with hematological malignancy in Korea.

Treatment for hematological malignancies (HMs) and functional decline associated with age can cause distress in elderly patients with HMs. However, information about the nature and effects of distress in this population is scarce. Therefore, this study examined the level of distress, its source, and the practical/familial/physical/emotional problems among elderly patients with HMs. We conducted a cross-sectional study of patients with HMs aged ≥ 65years who visited an outpatient clinic at a tertiary medical center in Korea between November 2019 and March 2020. Patient-reported distress and problems were measured using the distress thermometer (DT) and 39-item Problem List by the National Comprehensive Cancer Network. Descriptive statistics, χ2 test or Fisher's exact test, and multivariate logistic regression analyses were conducted (N = 132). In total, 62.1% of patients had moderate to severe distress (DT score ≥ 4), experiencing an average of nine problems. Significant sources of distress on multivariate logistic analysis included problems with transportation, depression, and constipation, accounting for 47% of distress variance. Most patients had physical (97.0%) or emotional problems (79.5%). Among these, fatigue (60.6%), worry (59.8%), tingling (59.8%), difficulty with mobility (47.0%), and memory/concentration (40.2%) were the most frequently reported problems. Elderly patients with HMs have a high burden of distress, which is affected by different sources, compared with younger patients with solid tumors. Thus, in this population, assessment and management of distress need to be conducted considering the unique features of their source and burden. Further research on distress should consider the cancer type and population age.

The relationship between patient-reported distress and healthcare utilization in mNSCLC.

e24138 Background: Distress has a negative impact on the patient experience of cancer. We previously demonstrated that patients with metastatic non-small cell lung cancer (mNSCLC) face significant and sustained distress during first-line treatment. However, the association between distress and unplanned healthcare utilization (HCRU) is not well understood. Here we examine this association. Methods: We conducted secondary analyses of data from 152 adult patients with mNSCLC treated at Duke Cancer Institute who were part of a retrospective chart review study (3/15-6/20). For the original investigation, demographic, clinical, and distress data were abstracted. NCCN Distress Thermometer (DT) scores were recorded at each clinic visit from start of first-line therapy to end of first year, change in therapy or death. The DT is an 11-point ordinal scale, with a 39-item Problem List, assessing overall distress. DT scores of &gt; = 4 indicate actionable distress. Further HCRU data were analyzed, including unplanned hospitalizations, 30-day readmissions, length of stay, clinic visits, infusion center visits, emergency department (ED) visits, and death. Descriptive statistical analyses were performed for sources of distress and HCRU. To examine the association between distress and HCRU, we utilized an adjusted frailty model (for baseline demographics, metastatic site, and National Cancer Institute Index). This Cox proportional hazards model allowed for multiple HCRU events per patient and included actionable distress as a time-dependent covariate. Results: First, the proportion of actionable DT scores (423/1652, 25.6%) was strikingly high. Most DTs included report of at least one physical problem (n = 1593, 96.4%), regardless of distress level. However, emotional problems (e.g., worry, nervousness, depression) were reported much more frequently when the DT score was actionable (61.9% vs. 20.8%). At the patient level (n = 152), actionable distress was associated with increased HCRU. For example, a larger proportion of those with an average DT score &gt; = 4 had at least one hospitalization (n = 22, 53.7%), infusion center visit (n = 11, 26.8%) or ED visit (n = 28, 68.3%) compared to patients with a non-actionable average DT score. Furthermore, HCRU was 54% more likely to occur after a patient reporting actionable distress compared to a patient reporting lower distress levels any time during treatment (adjusted HR 1.54; CI 1.20, 1.97). A one-point increase in distress was associated with an 8% increase in risk of HCRU (HR 1.08; CI 1.03, 1.13) at any point during treatment. Conclusions: Patients with mNSCLC experience high levels of distress, with actionable distress appearing to be driven significantly by emotional problems. Patient-reported distress is also associated with HCRU. Intervention development and testing is needed to address the unmet psychological needs in lung cancer care and their potential impact on unplanned HCRU.

Patient-reported distress at a cancer center during the COVID-19 pandemic.

e18644 Background: Assessments of health-related quality of life (HRQOL) are conducted by health systems to analyze and improve patient-centered care. Numerous studies have shown that the COVID-19 pandemic poses unique stressors for patients with cancer. However, the impact of the pandemic on HRQOL in patients with cancer is unknown. This study investigates change in self-reported global health scores in patients with cancer before and during the COVID-19 pandemic. Methods: In this single-institution retrospective cohort study, patients who completed the Patient-Reported Outcomes Measurement Information System (PROMIS) at a comprehensive cancer center before and during the COVID-19 pandemic were identified. Surveys were analyzed to assess change in the PROMIS global mental health (GMH) and global physical health (GPH) scores at different time periods (pre-COVID: 3/1/5/2019-3/15/2020, surge1: 6/17/2020-9/7/2020, valley1: 9/8/2020-11/16/2020, surge2: 11/17/2020-3/2/2021, and valley2: 3/3/2021-6/15/2021). Results: A total of 29,983 surveys among 7,209 patients were included in the study. Mean GMH scores for patients before the COVID-19 pandemic (50.57) were similar to that during various periods during the pandemic: surge1 (48.82), valley1 (48.93), surge2 (48.68), valley2 (49.19). Mean GPH score was significantly higher pre-COVID (42.46) than during surge1 (36.88), valley1 (36.90), surge2 (37.33) and valley2 (37.14) (Table). During the pandemic, mean GMH (49.00) and GPH (37.37) scores obtained through in-person were similar to mean GMH (48.53) and GPH (36.94) scores obtained through telehealth. Conclusions: In this single institution study, patients with cancer reported stable mental health and deteriorating physical health during the COVID-19 pandemic as indicated by the PROMIS survey. Modality of the survey (in-person versus telehealth) did not affect scores. [Table: see text]

Attribution of symptoms to adjuvant endocrine therapy and association with adherence among older women with breast cancer: A qualitative study.

e24086 Background: Oral adjuvant endocrine therapy (AET) is an effective treatment for hormone receptor positive breast cancer to decrease recurrence and mortality. However, adherence to AET is poor, with 1/3 of patients not completing the recommended 5-year treatment course. Studies have shown that symptoms of the medication, such as joint pain, hot flashes, and fatigue, are associated with AET discontinuation. While previous studies have focused on symptoms post-AET initiation, preliminary evidence suggests that pre-AET symptoms may be an important predictor of early AET discontinuation. We used qualitative interviews to explore adherence to AET and patients’ attribution of symptoms to AET to provide context for a larger quantitative study on the role of patient-reported distress pre-AET as a predictor of AET discontinuation. Methods: Participants were recruited from the Froedtert/MCW Cancer Center registry, stratified by high (≥4) and low pre-AET Distress Thermometer scores and adherence to/discontinuation of AET. Semi-structured phone interviews followed an interview guide focused on constructs previously identified in the literature as having strong associations with AET adherence. Interviews were recorded and transcribed. A multidisciplinary team developed a codebook based on the conceptual framework describing AET discontinuation by AlOmeir et al. as well as other themes that emerged from the data. Results: Interviews were conducted with 31 participants; ages ranged from 57-86 years. Participants were diverse with respect to race/ethnicity (55% white, 26% Black, 13% Latina, and 6% other racial/ethnic groups). Participants who reported symptoms described hot flashes, joint pain, low appetite, memory loss, depression, and fatigue. We saw support for previous findings by AlOmeir et al in which ability to deal with symptoms affected the decision to continue AET. We uncovered additional nuance related to attribution of symptoms, in that some participants attributed their symptoms to a side effect of AET, while others attributed symptoms to other factors including older age, recent completion of other cancer treatments, and psychological burden associated with a cancer diagnosis and treatment. Those who did not attribute symptoms to AET focused on AET as necessary treatment to increase survival, while those who attributed symptoms to AET reported a more negative AET experience in general, with AET described as an additional burden after cancer. Conclusions: Symptom attribution rather than experience of specific symptoms may be a key factor leading to discontinuation of AET. Patient-reported symptoms and associated distress pre-AET may be a viable way to identify patients at high-risk for AET nonadherence, allowing for timely intervention. This will be quantitatively tested in a large sample.

Patient-Reported and Physiologic Outcomes Following Pelvic Exenteration for Non-Repairable Radiated Rectourethral Fistula

ObjectiveTo investigate the impact of pelvic exenteration (PelvEX) on patient-reported pain, distress, and quality of life along with physiologic indicators of health in cancer survivors with radiated, non-repairable rectourethral fistula (RUF). Materials and MethodsWe reviewed a prospectively maintained quality improvement database of RUF patients at our institution from 2012 to 2020. Patients with radiated, non-repairable RUF who underwent PelvEX and had follow up to 1 year were included. Pain and distress scores were collected preoperatively and at 1-year follow up. Number of narcotic prescriptions in the 3 months before surgery and the year after surgery were abstracted. Short Form 12 surveys were administered in the postoperative period. Serum albumin, creatinine, carbon dioxide, hematocrit, and glucose were abstracted from electronic health records. Statistical analysis was performed using Wilcoxon signed-rank and Mann-Whitney tests. ResultsEleven patients met inclusion criteria. Patient-reported pain significantly decreased at 1 year follow-up compared to preoperative scores (median pre: 4 vs 1 year post: 0, P = .0312). Patient-reported distress significantly decreased pre- versus post-PelvEX (median pre: 5 vs post: 0, P = .0156). At the time of postoperative pain and distress surveys, 9 (82.8%) patients did not have narcotic prescriptions. Postoperative Short Form 12 scores were similar to an age-matched United States population (mental: P = .3125; physical: P = .1484). Serum-based indicators of health were not different in the pre- versus postoperative period (all P >.05). ConclusionPelvEX may be a valuable treatment option to decrease patient-reported pain and distress without compromising quality of life or physiologic health in patients with radiated, non-repairable RUF.

Patient-reported distress as an early warning sign of unmet palliative care needs and increased healthcare utilization in patients with advanced cancer

Cancer patients' sources of distress are often unaddressed, and patient-reported distress data could be utilized to identify those with unmet and impending care needs. We explored the association between moderate/severe distress and healthcare utilization in a large sample of non-small cell lung cancer (NSCLC) and non-colorectal gastrointestinal cancer patients. Adult patients treated between July 2013 and March 2019. Data from the NCCN Distress Thermometer (DT) and the accompanying "Problem List" were extracted from the EHR. A DT score of ≥ 4 indicates "actionable distress." Statistical analysis was performed using descriptive analysis for patient characteristics, clinical outcomes, and sources of distress. Generalized linear mixed models were fit to determine the relationship between distress and healthcare utilization (hospitalization, emergency department (ED) visit, or both). The ten most frequently reported problems were from the Physical and Emotional domains of the Problem List. Distress was mostly related to physical symptoms (pain, fatigue) and emotional issues (worry, fears, sadness, nervousness). Patients with actionable distress generally reported more problems across all their visits. Actionable distress was associated with higher odds of the composite outcome measure of hospitalization or visiting the ED, within both the next 3months (OR = 1.37; 95% CI = 1.19, 1.58; p < 0.001) and 6months (OR = 1.19; 95% CI = 1.03, 1.37; p = 0.019). Patients with significant distress had marked utilization of ED and inpatient services. DT scores are a source of untapped data in the EHR that can highlight patients in need of intervention, including palliative care and cancer support services.

Distress, Health-Related Quality of Life (HQOL) and Confidence in Survivorship Information (CSI) in Older (≥60 Years) Hematopoietic Cell Transplant (HCT) Patients

Background: The use of HCT to treat older (≥60 years) patients with hematological malignancies has markedly increased in recent years, however, the long-term effects of HCT on distress, psychosocial functioning, and HQOL in older HCT survivors is largely unknown. Though older HCT survivors have a higher risk of disease recurrence, they may have less access to resources and subsequently experience more pronounced late effects of disease and treatment. Confidence in Survivorship Information (CSI) in this specific age group has not been reported.Methods: We conducted a secondary analysis on a subgroup of patients enrolled in INSPIRE (NCT01602211) and PCORI-SCP (NCT02200133) clinical trials. Eligibility criteria for inclusion include HCT patients who were ≥ 60 years at time of transplant performed in 2003-2014, survived ≥ 1 year post-transplant with no evidence of disease relapse or secondary cancers. Patients were eligible for inclusion irrespective of transplant type (autologous or allogeneic), diagnosis, donor source or conditioning regimen. Primary endpoint was distress level in older HCT survivors; secondary endpoints included CSI and HQOL outcomes. We collected baseline distress level as measured by Cancer and Treatment Distress (CTXD) score, HQOL (measured by SF-12 Mental and Physical Component Summaries (PCS/MCS) and CSI (measured by a 15-item CSI questionnaire). Sociodemographic, disease and transplant factors were extracted from medical databases. Nonparametric (Wilcoxon rank sum/Kruskal-Wallis) test was conducted for comparing 2 or 3 groups. Spearman correlation and univariate linear regression model were used to evaluate associations between CTXD/CSI and PCS/MCS. Bonferroni correlation was used to adjust for multiple pairwise comparisons within age group.Results: A total of 567 patients satisfied the eligibility criteria and were included in this analysis. Median age at time of HCT was 69 years with 57% male; two-thirds were autologous HCT recipients. Table 1 details patient characteristics. The median CTXD score for older HCT survivors was 0.7 (range 0-2.7, SD 0.6) indicating low/insignificant level of distress post-HCT. 20-30% of HCT survivors reported moderate distress when asked about concerns regarding relapse risk, loss of energy and functional decline. Type of transplant (auto vs allo), age group (<65 years, 65-70 years, ≥70 years), and time from HCT (≤2 years vs > 2 years) showed no apparent effect on reported distress level. CSI median score was 1.4 (range 0-2) which remains consistent with the score reported previously by the original trial including all age groups, indicating that older HCT survivors may have similar level of confidence in their survivorship information as their younger counterparts. Of note, close to 20% of the older HCT survivors reported poor CSI when asked about strategies for prevention and treatment of long-term effects of HCT and when asked about their confidence in availability of community resources to deal with long-term HCT complications. No statistically significant correlation was identified between CSI in older survivors and transplant type, time from HCT, or age group. HQOL outcomes indicated a median PCS of 48.2 (range 21.1 - 62.9) and a median MCS of 54.7 (range of 14.9 - 67.2). Interestingly, even though not reflected on the overall median CTXD and CSI scores for this cohort, a significant individual association between CTXD/CSI and PCS/MCS measures of HQOL was found (Figure 1). A subgroup analysis conducted on older alloHCT recipients confirmed the same findings of clinically insignificant distress level (mean CTXD ≤1.1) while having a similar level of CSI when compared to all age groups. Interestingly, time from HCT (≤2 years vs > 2 years) showed no significant effect on distress level reported by older alloHCT survivors, and cGVHD status did not correlate with CTXD or CSI scores nor with PCS/MCS in older alloHCT survivors.Conclusion: This is the largest study to date to investigate patient-reported distress, CSI and HQOL in older HCT survivors. Our data indicate that older HCT survivors have low levels of stress after HCT and had confidence in survivorship information in most aspects of their care. However, targeted interventions should focus on improving strategies for prevention, treatment and availability of community resources to deal with late effects of HCT; aspects reported as points of low CSI by older HCT survivors. [Display omitted] DisclosuresFarhadfar: Incyte: Consultancy. Shaw: Orca bio: Consultancy; mallinkrodt: Other: payments. Devine: Be the Match: Current Employment; Orca Bio: Consultancy, Research Funding; Johnsonand Johnson: Consultancy, Research Funding; Sanofi: Consultancy, Research Funding; Magenta Therapeutics: Current Employment, Research Funding; Tmunity: Current Employment, Research Funding; Vor Bio: Research Funding; Kiadis: Consultancy, Research Funding. Majhail: Anthem, Inc: Consultancy; Incyte Corporation: Consultancy. Wingard: Merck: Consultancy; AlloVir: Consultancy; Celgene: Consultancy; Shire: Consultancy; Janssen: Consultancy; Cidara Therapeutics: Consultancy.

Impact of Screening for Distress, Anxiety, Depression and Supportive Care Needs in Patients Undergoing Radiation Therapy

Cancer related distress is multifactorial, defined by NCCN as encompassing psychological, social or physical aspects that impact a patient's ability to cope with and manage cancer. Guidelines endorse routine screening for distress to identify severity, nature, and impact of distress, thereby facilitating appropriate supportive care and resource allocation. Managing distress is an integral component of oncology care.To evaluate and address patient-reported distress, a survey was developed as a screening tool to assess distress, pain, nutritional status and psychosocial needs. A complementary rubric was designed to create thresholds for prompting appropriate referrals and interventions. Patients reported distress on an ordinal 1 to 10 scale as well as factors contributing to distress including navigating healthcare, child/elder care, spiritual concerns, transportation, pain, difficulty with sleep or fatigue, diet and nutrition, or financial/housing concerns. Anxiety and Depression were evaluated using the Patient-Reported Outcomes Measurement (PROMIS) anxiety and depression assessment. Distress scores ≥ 5 prompted appropriate referrals to symptom management, social work, spiritual care, and/or Psycho-Oncology. Weight loss and patient reported loss of appetite prompted referral to nutrition support. Anxiety and depression PROMIS scores ≥ 11 and 9, respectively, prompted referral to Psycho-Oncology.159 consecutive patients seen in Radiation Oncology completed the survey at time of consultation for radiation therapy. Mean distress score was 4 (SD 2.5) with 61 (38%) patients reporting distress scores ≥ 5. Rubric parameters prompted referrals to social work in 25 patients (16%) of which 20 (13%) were related to challenges with transportation to treatment. 28 (18%) and 23 (14%) of patients indicated pain or weight loss/loss of appetite prompting referrals to symptom management and nutrition support, respectively. Mean anxiety and depression scores were 8.2 and 6.8 respectively. A total of 66 (42%) of patient responses indicated anxiety and/or depression scores that prompted referral to Psycho-Oncology, with 40 (25 %) of patients reporting a score ≥ 9 for depression and 48 (30 %) of patients reporting a score ≥ 11 for anxiety. Following implementation of the screening tool and rubric, 100% of patients indicating a need for support were referred for appropriate resources compared to 14% prior to implementation.A comprehensive distress survey tool, including assessment of pain, anxiety, depression, psychosocial needs and nutrition status, provided detailed and actionable information to support patients with cancer undergoing radiation therapy. A complementary rubric designed by a multidisciplinary team provided a system for efficiently connecting patients to appropriate resources. Further study as to the benefit of referrals/supportive resources with regard to patient reported distress is indicated.

Targeting Coping to Improve Surgical Outcomes in Pediatric Patients With Median Arcuate Ligament Syndrome: Feasibility Study.

Background: Median arcuate ligament syndrome (MALS) is a vascular compression syndrome leading to postprandial epigastric pain, nausea, and weight loss; it can be treated surgically. While most patients report improved quality of life following surgical intervention, 30% continue to experience chronic abdominal pain. Pre-surgical diagnoses of depression and/or anxiety have been found to significantly predict post-surgical: quality of life, highest experience of pain, anxiety, and parent- and self-reported coping strategies. As such, increasing the coping strategies of pediatric patients with MALS may impact their post-surgical outcomes. The purpose of the current study was to: (1) implement a pre-operative cognitive behavioral therapy protocol with a focus on psychoeducation and coping strategies; and (2) determine feasibility of a pre-surgical intervention for this population.Method: Children (<18 years of age) with a diagnosis of MALS who were eligible for surgical intervention were invited to participate in a 7-week in-person or video-based pre-surgical cognitive behavioral therapy intervention. Psychiatric comorbidities were assessed at baseline and post-surgery; patient-reported distress, pain interference and intensity, health-related quality of life, and health status were assessed at four time points (baseline, week 4, week 7, and post-surgery). Descriptive analyses were used to characterize the sample, assess feasibility outcomes (i.e., attrition rates), and explore symptom-based outcomes across time.Results: Twelve pediatric patients (M age = 15.2 ± 1.7; 91.7% female) and their parents (91.7% mothers) participated. Feasibility metrics based on protocol completion were exceeded for engagement at the stages of consent (68.4% vs. goal of ≥50%), treatment initiation (92.3% vs. 85%), and treatment completion (84.6% vs. 75%). Out of the 12 participants, nine (75%) met criteria for at least one comorbid psychiatric diagnosis at baseline and nine (75%) elected to undergo MALS surgery after completing the intervention.Conclusion: The intervention implementation was feasible, despite chronic pain symptoms experienced by the sample, a high prevalence of psychiatric diagnoses, and an international pandemic, suggesting that it would be beneficial to further evaluate the efficacy of the intervention. Future research should include stakeholder input in the design, deployment, and evaluation of a pilot efficacy trial of pre-surgical cognitive behavioral therapy for pediatric patients with MALS.