National Comprehensive Cancer Network Distress Research Articles

Distress, depression, anxiety, and resilience in patients with cancer and caregivers.

Resilience is the ability to cope and function despite adversity, such as a cancer diagnosis, and has been conceptualized as the other end of a distress-resilience continuum. There are known associations among resilience, distress, depression, and anxiety-yet the nature of the associations is not well characterized. Less is known about the relationship among these variables for caregivers. We examined these associations in a convenience sample from a clinical setting with these hypotheses: (a) patients and nondyadic caregivers will report elevated, comparable levels of distress, depression, and anxiety, and (b) resilience will moderate the effect of distress on depression and anxiety. Participants were patients with a cancer diagnosis (n = 328) and nondyadic caregivers (n = 169). Participants completed a demographic/clinical questionnaire and self-report measures (National Comprehensive Cancer Network Distress Thermometer, Patient-Reported Outcomes Measurement Information System anxiety and depression measures, and Brief Resilience Scale). The statistical plan for this cross-sectional study included moderation analyses and various tests of association. Patients and caregivers reported comparable levels of resilience and elevated distress; patients exhibited more severe depression and anxiety. There was no evidence for a moderating effect of resilience. For both groups, the model of distress predicting depression/anxiety exhibited improved fit when including resilience. Distress and resilience share variance in the prediction of depression/anxiety among patients. Distress, depression, and anxiety are common in patients with cancer but also in cancer caregivers. Resilience appears to be an important variable to consider alongside distress and may enhance our understanding of the relationships among distress and depression/anxiety, especially for individuals with cancer. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

Distress screening in endometrial cancer leads to disparity in referral to support services

ObjectivesRacial disparities in survival from endometrial cancer (EC) are well known. Cancer distress has also been associated with worse clinical outcomes. We characterized the association between race/ethnicity, patient distress reported on the National Comprehensive Cancer Network Distress Thermometer and Problem List (NCCN DT & PL), referral to support services, time to surgery, and acceptance of adjuvant therapy in patients with EC. MethodsWe included patients presenting at an academic gynecologic oncology practice from 1/2013–6/2020 who had not received prior EC-directed treatment. Demographics, NCCN DT scores, and treatment details were abstracted from the electronic medical record. Difference in initial DT scores by race/ethnicity and treatment type was tested using general linear modeling. The significance of interaction effects was tested using linear mixed models and logistic regression. Results393 non-Hispanic White (NHW) and 134 non-Hispanic Black (NHB) patients were included. Median distress scores were higher in NHW patients compared to NHB patients (4 vs. 2, p < 0.001); 51% of NHW patients qualified for referral to support services compared to 40% of NHB patients (p = 0.03). Distress scores were highest at initial appointment and declined over time in NHW patients regardless of treatment, but were initially low and remained low over time in NHB patients. There was no association of initial distress score with time to surgery or acceptance of adjuvant treatment (p-values >0.25). ConclusionsAn observed difference in NCCN DT leads to racial disparities in referral to support services. The NCCN DT may not adequately measure distress in NHB women with EC.

Problem-solving skills training in adult cancer survivors: Bright IDEAS-AC pilot study

Purpose: Cancer patients experience significant distress and burden of decision-making throughout treatment and beyond. These stressors can interfere with their ability to make reasoned and timely decisions about their care and lead to low physical and social functioning and poor survival. This pilot study examined the impact of offering Problem-Solving Skills Training (PSST) to adult cancer survivors to help them and their caregivers cope more successfully with post-treatment decision-making burden and distress. Patients and Methods: Fifty patients who completed their definitive treatment for colorectal, breast or prostate cancer within the last 6 months and reported distress (level > 2 on the National Comprehensive Cancer Network distress thermometer) were randomly assigned to either care as usual (CAU) or 8 weekly PSST sessions. Patients were invited to include a supportive other (n = 17). Patient and caregiver assessments at baseline (T1), end of intervention or 3 months (T2), and at 6 months (T3) focused on problem-solving skills, anxiety/depression, quality of life and healthcare utilization. We compared outcomes by study arm and interviewed participants about PSST burden and skill maintenance. Results: Trial participation rate was 60%; 76% of the participants successfully completed PSST training. PSST patients reported reduction in anxiety/depression, improvement in QoL (p < 0.05) and lower use of hospital and emergency department services compared to CAU patients (p = 0.04). Conclusions: The evidence from this pilot study indicates that a remotely delivered PSST is a feasible and potentially effective strategy to improve mood and self-management in cancer survivors in community oncology settings.

Analysis of Distress in Patients with Gynecological Cancers During the COVID-19 Pandemic: A Telephone Survey

Objective: To investigate distress levels in patients with gynaecological cancers during the coronavirus disease-2019 (COVID-19) pandemic and identify factors associated with distress. Material and Methods: A total of 193 patients who underwent cytoreductive surgery for gynaecological cancer were included in our research. The patients were contacted by phone and provided detailed information about our study and the questionnaire that was to be applied. We performed distress screening using The National Comprehensive Cancer Network Distress Thermometer and Problem List (PL), developed for cancer patients. Results: In the study group, 51% of patients were categorized in the high-stress group. As practical problems, childcare (p<0.001), insurance/financial (p<0.033), work/school (p<0.001), treatment decisions (p<0.001), have significant differences between 2 groups in the present study. As family problems dealing with children (p<0.001), family health issues (p<0.014) have significant differences between the low-stress group and the high-stress group. All the emotional parameters evaluated by PL questionnaire have significant difference between the groups. The emotional significance levels of the parameters are as follows: depression (p<0.001), fears (p<0.001), nervousness (p<0.002), sadness (p<0.001), worry (p<0.012), loss of interest (p<0.001). Conclusion: Our results send a message to the gynaecological cancer healthcare world about what conditions may plague the gynaecological cancer patient in COVID-19 pandemic. Identifying problem areas for patients in our study constitutes the first step in the intervention.

Cancer in the Adolescent and Young Adults (AYA) and Children: A Comprehensive Analysis of the Epidemiology and Psychosocial Morbidity in the Indian Population.

Bhupesh GuleriaAims Adolescent and young adults (AYAs), children with cancer, and their guardians have unique psychosocial morbidities adversely effecting quality of life (QOL). This is measurable using patented tools. We analyzed epidemiological and clinicopathological patterns of solid organ cancers in this subgroup. We also assessed psychosocial morbidity and changes in QOL faced by them. Methods All patients aged 2 to 39 years, newly diagnosed with cancer from April 2017 to March 2019 were included. Clinical history, diagnosis, staging, treatment, outcomes, and follow-up were recorded. The National Comprehensive Cancer Network (NCCN) distress thermometer and European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ C-30) were used to assess psychosocial morbidity of AYAs, children ≥ 12 years, and parents of children < 12 years. Pediatric Quality of Life Inventory (Peds QL) version 3.0 was used for children < 12 years. Data was analyzed using descriptive statistics. Results A total of 571 patients (512 AYAs, 59 children) were enrolled. Median age was 30 years with male predominance (58.1%). Most cases (98.6%) were absent from school or work. Carcinoma breast was the most common in females (29.3%) and non-Hodgkin lymphoma in males (12.6%). 91.06% had overall NCCN distress score ≥ 4. Also, 73.81 and 79.49% had “quite a bit” or “very much” responses on functional and symptom scales, respectively, in EORTC QLQ C-30 questionnaire. Peds QL version 3.0 revealed total score ranging from 276 to 523 for each patient. Conclusion AYAs and children with cancer are extremely vulnerable to psychological stress and morbidity. Use of well-established tools help in assessing their mental status and timely psychiatric referral can be initiated.

Distress, problems and unmet rehabilitation needs after treatment for gynecological cancer.

The prevalence of distress, problems and need for rehabilitation among women treated for gynecological cancer is largely unknown. The aims of this study were to examine the prevalence of distress, problems and unmet rehabilitation needs in the first years after treatment for gynecological cancer. Women treated for gynecological cancer within the last 2years were invited. Participants responded to the National Comprehensive Cancer Network Distress Thermometer and Problem List measuring distress and problems. They also answered a questionnaire regarding physical endurance, muscle strength, and need for rehabilitation services. Of 114 eligible women, 92 (81%) agreed to participate. Mean time since last treatment was 7.6months (range 0-24.5months). A total of 57% of the participants reported distress. The four most common problems reported were fatigue (58%), tingling in hands/feet (54%), worry (53%), and problems with memory/concentration (50%). Problems associated with distress were: dealing with partner, all emotional problems (i.e. depression, fears, nervousness, sadness, worry, and loss of interest in usual activities), appearance, memory/concentration, pain, sex, sleep, and problems with physical endurance and muscle strength. Fifty-two percent reported unmet needs for rehabilitation services. Women with distress reported more unmet rehabilitation needs than those in the non-distressed group. The prevalence of distress in this population of women treated for gynecological cancer was high. Having a high number of problems and having unmet needs for rehabilitation services were both associated with distress. Hence, measurement of distress seems to be helpful when assessing the need for rehabilitation services.

Assessment of the operational characteristics of the National Comprehensive Cancer Network distress management tool, v. 2.2018, in patients seen at the Instituto Nacional de Cancerología, Bogotá

ResumenIntroducción. Los pacientes con cáncer presentan niveles significativos de malestar emocional. La National Comprehensive Cancer Network (NCCN) desarrolló un instrumento (Distress Management) para evaluarlo de forma rápida en pacientes oncológicos. Para su utilización en Colombia, se hizo la adaptación transcultural y se validó.Objetivo.Determinar las características operativas del instrumento de malestar emocional, versión 2.2018, en pacientes atendidos en el Instituto Nacional de Cancerología.Materiales y métodos. Previa autorización de la NCCN, se procedió a la traducción, adaptación transcultural y evaluación de las características operativas del instrumento. Se incluyeron 343 pacientes con diagnóstico de cáncer atendidos en el Instituto Nacional de Cancerología, quienes diligenciaron el instrumento adaptado transculturalmente. Se efectuó un estudio de prueba diagnóstica como patrón de referencia mediante una entrevista semiestructurada.Resultados. Los pacientes tenían una edad promedio de 49,7 años (DE=15) y la mayoría (67 %) eran mujeres. El instrumento tuvo un área bajo la curva ROC de 0,81 (IC95% 0,77- 0,86); el punto de corte óptimo fue de 3,5, el cual se aproximó a 4; la sensibilidad fue de 0,81 (IC95% 0,76-0,85) y la especificidad de 0,69 (IC95% 0,64-0,74). El porcentaje de acuerdo entre el resultado de la entrevista y el instrumento fue de 73 % (kappa=0,64; p<0,001).Conclusiones. El instrumento de malestar emocional permitió detectar el malestar emocional moderado a grave que requiere intervención y manejo. Este instrumento fue adaptado y validado en pacientes con cáncer en Colombia, conservándose el punto de corte en ≥4 como en la versión original.

Impact of molecular alterations on quality of life and prognostic understanding over time in patients with incurable lung cancer: a multicenter, longitudinal, prospective cohort study

PurposeThe purpose of this study is to investigate changes over time in quality of life (QoL) in incurable lung cancer patients and the impact of determinants like molecular alterations (MA).MethodsIn a prospective, longitudinal, multicentric study, we assessed QoL, symptom burden, psychological distress, unmet needs, and prognostic understanding of patients diagnosed with incurable lung cancer at the time of the diagnosis (T0) and after 3 (T1), 6 (T2) and 12 months (T3) using validated questionnaires like FACT-L, National Comprehensive Cancer Network (NCCN) Distress Thermometer (DT), PHQ-4, SCNS-SF-34, and SEIQoL.ResultsTwo hundred seventeen patients were enrolled, 22 (10%) with reported MA. QoL scores improved over time, with a significant trend for DT, PHQ-4, and SCNS-SF-34. Significant determinants for stable or improving scores over time were survival > 6 months, performance status at the time of diagnosis, and presence of MA. Patients with MA showed better QoL scores (FACT-L at T1 104.4 vs 86.3; at T2 107.5 vs 90.0; at T3 100.9 vs 92.8) and lower psychological distress (NCCN DT at T1 3.3 vs 5; at T2 2.7 vs 4.5; at T3 3.7 vs 4.5; PHQ-4 at T1 2.3 vs 4.1; at T2 1.7 vs 3.6; at T3 2.2 vs 3.6), but also a worsening of the scores at 1 year and a higher percentage of inaccurate prognostic understanding (27 vs 17%) compared to patients without MA.ConclusionPatients with tumors harboring MA are at risk of QoL deterioration during the course of the disease. Physicians should adapt their communication strategies in order to maintain or improve QoL.

Racial differences in patient-reported distress among women with endometrial cancer

Objectives: There are established racial disparities in mortality from endometrial cancer (EC). In addition, distress from cancer diagnosis and treatment is associated with lower compliance and more frequent use of emergency services. Differences in distress by race/ethnicity in EC have not been previously explored. Here we characterize the association between race/ethnicity, distress scores and stressors reported by patients on the National Comprehensive Cancer Network Distress Thermometer and Problem List (NCCN DT), and referral to support services in women with EC. Methods: Patients presenting to a single academic outpatient gynecologic oncology practice for initial evaluation of known EC from January 2013-May 2020 were included. The electronic health record was used to abstract demographics, NCCN DT scores, and stressor categories (physical, emotional, spiritual, practical, and family) from the initial encounter. At our institution, patients are referred to support services for an NCCN DT score ≥4. We excluded women who received prior cancer-directed therapy and those without an NCCN DT score recorded at their initial appointment. Summary statistics were tabulated for demographics. Mann-Whitney U tests were used for inter-group difference on continuous variables and 2-sample tests for equality of proportions were used for binary variables. Results: 412 non-Hispanic White (NHW, mean age 63) and 149 non-Hispanic Black (NHB, mean age 65) women were included in our analysis. More NHB women presented with high-grade EC (53.7%) vs NHW women (21.9%) and fewer NHB women were privately insured (32% vs 52%). Median distress scores were higher in NHW women compared to their NHB counterparts (4 vs. 2, p Conclusions: The NCCN DT, a widely used tool in cancer clinics, may fail to adequately measure distress in NHB women presenting with a diagnosis of EC, despite >30% more high risk histology cancers in this cohort. This phenomenon appears to be driven by the greater frequency of ‘0’ distress scores reported by NHB women. This difference leads to disparities in referral to additional support services, which may affect quality of care and quality of life. Additional research is needed to better understand how women of different races and ethnicities approach the NCCN DT.

Gynecologic oncology patients who are unemployed and underinsured face high distress that extends beyond financial toxicity

<h3>Objectives:</h3> Disparities in employment and the sequelae of financial toxicity are on the rise and as high as 22% among gynecologic oncology patients. Despite this effort, distress related to unemployment remains unknown. We aimed to study the associations between employment, insurance status, and distress among gynecologic oncology patients. Secondary objectives were to study the impact of being unemployed and underinsured on different problem areas of distress. <h3>Methods:</h3> This is a single institution, cross sectional analysis of gynecologic oncology patients who were screened with the National Comprehensive Cancer Network distress thermometer and problem list (DT/PL) at their outpatient appointment between 6/2017-9/2017. Primary outcome was self-reported high distress (DT score ≥5). Employment status included employed, unemployed, homemaker, and retired. Underinsured was defined as self-pay or having Medicaid. The distress PL included 5 categories-practical, family, emotional, physical, and other. Logistic regression was used to assess whether unemployment and being underinsured predicted high distress, adjusting for age, race, relationship status, body mass index, and cancer stage. Subgroup analysis of 456 patients with DT score >0 was performed to assess associations between distress problem type and employment/insurance status using chi-square tests. <h3>Results:</h3> Among 885 women screened for distress, 101(12%) were unemployed, and 35 (6%) underinsured. Over half (51.5%) self-reported any distress (DT score >0), and 191 (21.6%) indicated high distress. Unemployed patients were 3.5 times more likely to endorse high distress than their employed counterparts [42.6% vs. 16.9%, adjusted odds ratio (aOR) = 3.5, 95% confidence interval (CI) 2.2 - 5.7, <i>p</i><.001]. A similar strength and significance of association was found between the underinsured group and high distress (41.5% underinsured vs 20.3% insured reported DT score ≥5, aOR=2.8, 95% CI 1.5 - 5.1, <i>p</i><.001). Compared to employed patients, those who were unemployed more frequently endorsed distress related to practical (p<.05), emotional (p<.001), physical (p<.01), and other (p<.05) problems. The same associations held true when comparing unemployed patients to homemakers/retired patients, except for practical problems. Lastly, compared to insured patients, those who were underinsured reported higher rates of family (p<.001), emotional (p<.001), and other (p<.01) problems. <h3>Conclusions:</h3> Distress among gynecologic oncology patients is disproportionately higher among those who are unemployed or underinsured. This elevated distress appears to extend beyond financial toxicity and stems from different problem areas. Future studies should investigate collaborative interventions between oncology providers, social workers and psychologists that mitigate the distinct problems of low socioeconomic patients in order to improve outcomes in distress and overall cancer care.

Understanding the Factors Related to Trauma-Induced Stress in Cancer Patients: A National Study of 17 Cancer Centers.

Objective: Posttraumatic stress symptoms (PTSS), defined as continued trauma, has been found to negatively impact mental and physical health. Many cancer centers routinely assess level of psychological distress but assessment of symptoms related to PTSS is less routine. Understanding the mechanisms by which psychological distress results in, or influences, PTSS will aid in developing protocols to more effectively identify PTSS in cancer patients. Methods: Survey data were analyzed from intake data at 17 cancer centers across the U.S. Patients reported distress ratings on the National Comprehensive Cancer Network (NCCN) Distress Thermometer (DT), responded to questions related to intrusive cognitive symptoms of PTSS and provided information about current symptoms and social support systems. Hypotheses were tested using a conditional process model, and paths were provided for direct and indirect effects, including moderation and mediated moderation. Results: Findings indicated that, while distress scores were influential in the total model, the direct effect of distress on intrusive cognitive symptoms of PTSS was negated by the model’s indirect effects. The effects of social support and older age were independent protective factors, and there was a moderation effect that varied across groups. Lastly, physical cancer symptoms as a mediating variable further explained the relationship between psychological distress and intrusive cognitive symptoms of PTSS. Conclusions: Study results provide evidence for a potential mechanism by which distress relates to intrusive cognitive symptoms of PTSS. Furthermore, findings suggest that older age and social support may be protective factors for certain groups and risk factors for others. This study provides formative data for potential next steps that could lead to improvements in routine psychosocial screenings in cancer treatment settings.

Universal social needs assessment in gynecologic oncology: An important step toward more informed and targeted care in the public safety net.

Social needs are actionable mediators of social determinants of health. Along with distress, they affect quality of life and survival in patients with cancer. The objectives of this study were to identify the most common social needs and distress in a largely immigrant gynecologic oncology patient population at a public safety-net hospital and to evaluate for specific needs associated with distress and poor outcomes. This was a prospective, survey-based cohort study of patients who participated in a performance-improvement initiative offering social needs assessment and distress screening. Patients provided sociodemographic information and completed validated surveys adapted from the Health Leads Social Needs Screening Toolkit, the National Comprehensive Cancer Network Distress Thermometer, and the Emotion Thermometers Tool. Associations between social needs, distress, and treatment outcomes were analyzed. In total, 135 women were included. Of these, 65.2% had at least 1 unmet social need, and 36.3% screened positive for distress. Help reading hospital materials (30.4%) was the most frequently reported need. Social isolation (odds ratio [OR], 3.65; 95% CI, 1.35-9.9; P = .01) and lack of safety at home (OR, 4.90; 95% CI, 2.23-10.62; P = .0001) were associated with distress. Perceived lack of finances for medical care (OR, 5.69; 95% CI, 1.12-28.9; P = .036) and lack of transportation (OR, 20.5; 95% CI, 2.69-156.7; P = .004) were associated with nonadherence-related treatment interruption, whereas positive distress scores were associated with interruption because of comorbidities or treatment-related toxicities (OR, 20.5; 95% CI, 1.5-268.6; P = .02). Systematically identifying social needs and developing interventions aimed at mitigating them may lead to more actionable health care disparities research and affect treatment outcomes. Social needs are individual-level social conditions that drive health disparities. In this survey-based study, the objective was to identify common social needs and how these relate to distress and poor health outcomes in a largely immigrant and underserved gynecologic oncology patient population. The authors found that greater than one-third of patients screened positive for distress, nearly two-thirds had at least 1 unmet social need, and these factors were associated with emergency room visits, hospital admissions, and treatment interruptions. These findings suggest that screening for universal social needs allows providers to identify unrecognized needs and implement interventions to mitigate distress and improve health outcomes.

Implementation of Un Abrazo Para La FamiliaTM in southern Arizona with extension to survivors and assessment of effects on distress.

Introduction: Un Abrazo Para La FamiliaTM [Embracing the Family] (Abrazo) is a 3-hr psychoeducational intervention designed for low-income informal caregivers who are cosurvivors of cancer. A rehabilitation-informed preventive intervention, Abrazo reflects the importance of family, culture, and socioeconomic background. A pilot study was conducted to inform a larger geographic implementation of Abrazo. The aims were to determine if previous outcomes of increased cancer knowledge and self-efficacy could be replicated and to investigate intervention effects on distress. Method: A pretest-posttest design was used to assess changes in cancer knowledge, self-efficacy, and distress for Abrazo participants. Distress was measured with the American Medical Association's Caregiver Assessment (Epstein-Lubow et al., 2010) and the National Comprehensive Cancer Network Distress Thermometer (Donovan et al., 2014; Forsythe et al., 2013; Fulcher & Gosselin-Acomb, 2007). The Patient Health Questionnaire-4 (PHQ-4) (Kroenke et al., 2009) measured symptoms of anxiety and depression. Results: Both survivors (n = 37) and cosurvivors (n = 103) increased in cancer knowledge and self-efficacy after completing Abrazo. Mean levels of distress and symptoms decreased for cosurvivors, but not for survivors. At study entry, 19% of cosurvivors and 12% of survivors scored ≥6/12 on the PHQ-4, the standard cutoff for clinically significant symptoms. Only 13% of cosurvivors, but 30% of survivors exceeded this threshold at three-month follow-up. Elevated symptoms persisted in 12% of survivors from baseline to follow-up; in 18% of survivors, symptoms rose between baseline and follow-up. Discussion: Increased cancer knowledge and self-efficacy in participants replicates evidence of Abrazo's effectiveness. The result of decreased distress in cosurvivors extends our understanding of Abrazo's effectiveness with this population. The increase in distress in cancer survivors warrants further attention to their intervention needs. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

Experiences of cancer care during COVID-19: Phase 1 results of a longitudinal qualitative study.

BackgroundHealthcare services have responded to the challenges of service delivery during COVID-19 with telehealth and hybrid models of care. However, there is limited understanding of the experiences of care amongst people affected by cancer and how their experiences may change and evolve against the shifting landscape of COVID-19 incidence, mortality, vaccination and refinements in service delivery.ObjectivesThis study explores the experiences of cancer care amongst people affected by cancer in Ireland during the COVID-19 pandemic. This paper presents the results of the initial cross-sectional semi-structured interviews and the longitudinal qualitative research design which will be employed in this study.DesignA longitudinal descriptive qualitative study.SettingIrelandParticipantsPeople living with and after cancer or caring for someone with cancer during the COVID-19 pandemic.MethodsParticipants were recruited to the study via social media advertisements and consented to participate in up to three semi-structured interviews between January and July 2021. Initial semi-structured interviews were conducted with 16 participants in January 2021. Participants completed measures of resilience (2-item Connor‐Davidson Resilience Scale) and distress (The National Comprehensive Cancer Network Distress Thermometer). Interviews were recorded, transcribed and analysed thematically.ResultsParticipants reported low levels of distress and moderate to high levels of resilience on average. Three themes were generated from analysis of the first phase of cross-sectional interviews. Participants described a counterbalance of being cautious of infection and keeping safe through prevention and shielding strategies. Although hospitals felt safe and were working efficiently, some participants felt COVID-19 had compromised person-centredness and empathy in care. While participants valued the measures taken to minimize infection risk, substitution of face-to-face appointments with telehealth services and attending essential face-to-face appointments alone restricted participants' access to professional and social support. Despite this, many participants felt public health measures to reduce transmission of COVID-19 had created a sense of not missing out, feeling safe and reduced difficult social interactions requiring explanation of their diagnosis.ConclusionsThere is an opportunity to learn from the experiences of healthcare delivery from the perspectives of people affected by cancer during the COVID-19 pandemic. The results highlight the complexities and dualities of living with, after or caring for someone with cancer during the COVID-19 pandemic. Opportunities for longitudinal qualitative research to explore the evolving experiences, concerns and persistent and emerging unmet information and clinical needs within the rapidly changing socio-political, socio-cultural and healthcare contexts of the COVID-19 pandemic are highlighted.

Survivorship care plans and adherence with surveillance schedule in patients with invasive melanoma.

e24079 Background: Melanoma accounts for 5.5% of new cancer diagnoses in the United States, and the 5-year overall survival is 93%. Overall, 7% of patients develop a recurrence, and 4-8% develop a second primary melanoma. This study aimed to assess how the standards set by the American College of Surgeons Commission on Cancer (CoC) to provide survivorship care plans (SCP) to patients may improve adherence to surveillance visits. Methods: All patients treated for invasive melanoma at our institution between 8/2018-2/2020 were included. SCP containing stage, treatment summary, and surveillance plan were delivered in-person to patients and sent to primary providers and dermatologists as outlined by CoC Standards for Optimal Care. Psychosocial distress (PSD) screening was performed using the National Comprehensive Cancer Network Distress Thermometer, with scores &gt; 4 requiring further evaluation by oncology social worker. SCP and PSD were provided during the initiation phase of our cancer care program, and half the patients received services. Surveillance adherence was determined from chart review. The two groups were compared by t-test for continuous or chi-square test for categorical variables. Multiple regression analysis with odds ratios were performed. Mann-Whitney analysis was performed to assess the impact of SCP on PSD. Results: Of 146 patients identified for our cohort, 73 received SCP and PSD screening. Stage IA was the most common diagnosis (44%), followed by IB (13%) and IIIC (9%). Ninety-eight patients (67%) were adherent to all surveillance visits, and 55 of these received SCPs. Most patients noted low distress without the need for further support (79%), and 12 (21%) scored ≥4, benefiting from emotional and financial support and appointment and health insurance navigation. High PSD score did not correlate with advanced stage. Reception of SCP (p = 0.036) and close distance to treating facility (p = 0.016) improved adherence to surveillance visits. For patients who did not receive SCP, likelihood to follow up decreased by a factor of 0.469 (95% CI 0.231 - 0.952). Sex, age, PSD score, and stage did not affect surveillance adherence (p = NS). There were 6 recurrences, of which 4 were physician-detected during surveillance, and 8 patients developed second primary melanomas, all physician-detected. Conclusions: Delivery of SCP, a component of which includes counseling regarding signs and symptoms of recurrence or possibility of second primary melanoma, leads to significantly higher rates of surveillance adherence. This was shown for all stages. Melanoma survivors require close clinical follow-up, as demonstrated by our study finding that even with patient education, most recurrences and all new primary melanomas were physician-detected. PSD among melanoma patients is common, and all patients regardless of stage should undergo screening, as even early-stage patients exhibited distress.

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

PurposeTo 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.MethodsWe 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.ResultsOverall, 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.ConclusionsA 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 SurvivorsScreening 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.Supplementary InformationThe online version contains supplementary material available at 10.1007/s11764-021-01052-4.

Prevalence of distress, its associated factors and referral to support services in people with cancer.

Aims and objectivesTo (i) characterise prevalence of distress amongst people diagnosed with cancer, (ii) determine factors associated with increasing distress, (iii) describe reported problems for those with clinically significant distress and (iv) investigate the factors associated with referral to support services.BackgroundInternational studies report a high prevalence of clinically significant distress in people with cancer. Australian studies are notably lacking. Additionally, clinicians still do not fully understand the factors associated with cancer‐related distress.DesignPeriod prevalence study.MethodsDistress screening data were analysed for 1,071 people accessing the Cancer Council Western Australia information and support line between 01/01/2016–31/12/2018. These data included people's demographics, cancer diagnoses, level of distress, reported problems and the service to which they were referred. Distress and reported problems were measured using the National Comprehensive Cancer Network Distress Thermometer and Problem List. A partial proportional logistic regression model was constructed to determine which factors were associated with increasing levels of distress. Standard binary logistic regression models were used to investigate factors associated with referral to support services. The STROBE checklist was followed.ResultsPrevalence of clinically significant distress was high. Self‐reported depression, sadness, worry and a lack of control over treatment decisions were significantly associated with increasing distress. Emotional problems were the most prevalent problems for people with clinically significant distress. Most people were referred to emotional health services, with depression, fatigue, living regionally and higher socioeconomic status associated with referral.ConclusionsEmotional problems such as depression, sadness and worry are associated with increasing levels of distress.Relevance to clinical practiceNot all factors associated with referral to support services were those associated with increasing levels of distress. This suggests that other factors may be more influential to referral decisions.

Prevalence and Determinants of Psychological Distress in Adolescent and Young Adult Patients with Cancer: A Multicenter Survey

Objective:This study aimed to investigate the current prevalence and determinants of psychological distress and the association of distress with general information, character strengths, medical coping, and social support in Chinese adolescents and young adults (AYAs) aged 15–39 years with cancer.Methods:A multicenter survey was carried out. Eight hundred and nine patients completed the Chinese version of the National Comprehensive Cancer Network distress thermometer (DT), the three-dimensional inventory of character strengths, the medical coping modes questionnaire, and the Social Support Rating Scale.Results:The current prevalence of psychological distress in Chinese AYAs with cancer was 83.4%. Binary logistic regression analysis showed that gender, age, educational level, marriage, monthly income, exercise intensity, cancer classifications, treatments, self-control, confrontation, avoidance, and subjective support were all associated with distress. AYA cancer patients who were female, younger, or divorced or had a lower monthly income, education level, or exercise intensity were more likely to have higher level of distress. Compared to AYAs with other cancer classifications, patients with digestive system malignancies, breast cancers, and head and neck malignancies had a higher prevalence of distress. Patients receiving chemotherapy or radiotherapy were more likely to be distressed. The higher the self-control, confrontation, avoidance, and subjective support scores were, the lower the prevalence of distress was among AYA cancer patients.Conclusions:The prevalence of psychological distress in AYA cancer patients was relatively high. Potential interventions targeting exercise intensity, character strengths, medical coping, and social support may decrease the prevalence of psychological distress in this patient population.

Single early palliative care intervention added to usual oncology care for patients with advanced cancer: A randomized controlled trial (SENS Trial)

Background: International oncology societies recommend early palliative care. Specific models to integrate early palliative care efficiently into clinical practice are debated. The authors designed a study to look at the quantitative and qualitative outcomes of an early palliative care intervention in oncological care to decrease stress and improve quality of life. Aims: To compare a single structured early palliative care intervention added to a usual oncology care in terms of distress and health-related quality of life at baseline compared to 6 months after enrollment. Design: This multicenter randomized controlled trial (NCT01983956) enrolled adult patients with advanced cancer. Participants were either randomly assigned to usual oncology care alone or usual care plus a structured early palliative care intervention. Setting/participants: One hundred fifty adult patients with a variety of advanced cancer diagnoses were randomized. Seventy-four participants were in the intervention and 76 participants in the control group. The primary outcome was the change in patient distress assessed by the National Comprehensive Cancer Network distress thermometer at 6 months. Health-related quality of life, the secondary outcome, was assessed by the Functional Assessment of Cancer Therapy–General Questionnaire. Results: The results showed no significant effect of the early palliative care intervention neither on patient distress nor on health-related quality of life. Conclusion: The addition of an early intervention to usual care for patients with advanced cancer did not improve distress or quality of life. Thus, patients may need more intensive early palliative care with continuous professional support to identify and address their palliative needs early.

Post-traumatic Stress Symptoms and Serotonin Transporter (5-HTTLPR) Polymorphism in Breast Cancer Patients.

Introduction: Post-traumatic Symptoms (PTSS) and Post-traumatic Stress Disorder (PTSD) have been reported to affect a quite significant proportion of cancer patients. No study has examined the relationship between serotonin transporter gene-linked polymorphic region (5-HTTLPR) and cancer, including Gene-Environment interactions between this polymorphism and specific causes of distress, such as cancer related problems (CRP) or life stressful events (SLE).Methods: One hundred and forty five breast cancer outpatients participated in the study and were assessed using the Impact of Event Scale (IES), the Problem List (PL) developed by the National Comprehensive Cancer Network (NCCN) Distress Management Guidelines and the Paykel's Life Events Interview to evaluate the exposure to SLE during the year before the cancer diagnosis. Each patient was genotyped for 5-HTTLPR polymorphism by analyzing genomic DNA obtained from whole blood cells. Gene-Environment interactions were tested through moderation analysis.Results: Twenty-six patients (17.7%) were classified as PTSS cases using the IES. Genotype and phenotype distributions did not differ across individuals with/without PTSS (genotype: χ2 = 1.5; df = 2; p = 0.3; phenotype χ2 = 0.9; df = 1; p = 0.2). For both the genotype and phenotype model, using CRP as a predictor showed significant gene-environment interactions with IES total score (p = 0.020 and p = 0.004, respectively), with individuals carrying the l/l allele showing a greater probability of experiencing PTSS. No interaction was found in relationship to SLE (p = 0.750).Conclusion: This study showed a significant GEI between CRP and PTSS in breast cancer patients, with carriers of the l/l allele showing indicators consistent with greater sensitivity to stress.