The relationship between response style and symptom reporting in cancer patients.

PURPOSE: Patient-reported outcomes are considered the gold standard for documenting treatment-related toxicities and cancer-related symptoms in the management of oncology patients. Poor concordance between patients and health care professionals (HCPs) on patients' symptoms has been documented. The purpose of this study is to examine the association between social desirability, a response style, and symptom reporting in a colorectal cancer clinic. METHODS: Patients being treated for colorectal cancer completed a social desirability measure and a symptom measure before their appointment in the oncology clinic. The HCP who saw the patient completed a symptom measure for the patient after the clinic visit. RESULTS: One hundred sixty-nine patients consented to participate in the study. The majority of the patients had stage 4 disease. There was a statistically significant positive correlation between social desirability and overall reported symptom burden. There was a statistically significant negative correlation between social desirability and concordance between the patient and the HCP on the patient's symptoms. Social desirability scores were stable over the course of 1 year. CONCLUSION: Sensitivity to social desirability effects seems to play an important role in patient self-report of symptoms. As social desirability is a stable quality, patients sensitive to it may be persistently at risk for undertreatment of symptoms due to limited symptom reporting.

Emotional distress among survivors of adolescent and young adult cancer or adult cancer.

PURPOSE: We examined emotional distress in cancer survivors diagnosed as adolescents or young adults (AYAs) versus cancer survivors diagnosed as middle/older adults and versus the general population without a history of cancer. METHODS: Using the 2014-2017 National Health Interview Surveys, 2500 AYA survivors (initial cancer diagnosed between aged 15-39 years) were matched with 2500 middle/older adult survivors (initial cancer diagnosed at aged ≥40 years) as well as with 1609 from the general population without a history of cancer. Multinomial logistic regression models estimated the risk of emotional distress (measured using the validated Kessler distress (K6) scale) in the study population (AYA vs. middle/older adult cancer survivors and vs. general population without cancer), adjusting for known covariates. RESULTS: Emotional distress was more prevalent among AYAs (average age 52.8 ± 19.1 years) than middle/older adult (average age 67.4 ± 14.0 years) cancer survivors (moderate: 25.5% vs. 19.4%; and severe: 6.4% vs. 4.4% [P < .0001]); however, there was no difference in emotional distress between AYA cancer survivors (moderate: 26.8% and severe: 7.5%) versus general population without cancer (moderate: 23.7% and severe: 6.2%). In the multivariable multinomial analyses, AYA cancer survivors had higher risk of reporting emotional distress (adjusted relative risk = 1.45; 95% confidence interval = 1.13-1.86) than middle/older adult cancer survivors. CONCLUSION: Psychosocial support may be especially needed for cancer survivors diagnosed as adolescents or young adults to mitigate adverse psychosocial outcomes.

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

OBJECTIVE: 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. METHOD: 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. RESULTS: 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. CONCLUSIONS: 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).

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

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

Advancing the science of distress screening and management in cancer care.

Given the high prevalence (30-35%) of psychosocial and psychiatric morbidity amongst cancer patients in any phase of the disease trajectory, screening for emotional problems and disorders has become mandatory in oncology. As a process, screening begins at the entry to the cancer care system and continues at clinically meaningful times, periodically during active cancer care, or when clinically indicated. The goal is to facilitate proper referral to psychosocial oncology specialists for more specific assessment and care, as well as treatment and evaluation of the response, according to the implementation of distress management guidelines. In this editorial, we will provide a non-exhaustive overview of relevant protocols, with particular reference to the National Comprehensive Cancer Network (NCCN) Distress Management in Oncology Guidelines, and review the challenges and the problems in implementing screening, and the assessment and management of psychosocial and psychiatric problems in cancer centres and community care.

Update on the Implementation of NCCN Guidelines for Distress Management by NCCN Member Institutions.

The first NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines) for Distress Management were published in 1999. Since then, a number of other organizations have advocated for distress screening. Previous surveys of distress screening showed modest progress in implementation of the NCCN Guidelines for Distress Management by NCCN Member Institutions (MIs); this review examined whether further progress has been made. Representatives appointed to the NCCN Distress Management Panel or their designee were asked to complete an online survey in the summer of 2018. The survey was developed based on similar surveys performed in 2005 and 2012 and a survey of psychosocial staffing conducted in NCCN MIs in 2012. New items solicited details about triaging, rescreening, formal screening protocols, and tracking of distressed patients. The survey was completed by representatives from 23 of 27 NCCN MIs (85%). Among the responding institutions, 20 (87%) currently conduct routine screening for distress and 3 are piloting routine screening. All respondents reported use of a self-report measure to screen for distress, with the Distress Thermometer most often used. A total of 70% of respondents rescreen patients for distress and 83% reported having a formal distress screening protocol in place. Once triaged, 65% of institutions who routinely screen for distress track clinical contacts and referrals; 70% track rates of adherence to screening protocols. Findings suggest wide acceptance and implementation of the NCCN Guidelines. Most respondents reported the existence of a formal distress screening protocol, with routine tracking of clinical contacts and referrals and rates of protocol adherence. Clinical experience and the American College of Surgeons Commission on Cancer accreditation standard for cancer centers appear to have resulted in greater adoption and implementation of the guidelines, but considerable opportunities for improvement remain.

Gaps in communication between cancer patients and healthcare providers: symptom distress and patients' intentions to disclose.

PURPOSE: Good communication between patients and healthcare professionals (HCPs) is an important contributor to patient well-being. Few studies have focused on the gaps in communication between patients and HCPs about symptoms. This study examined patients' perspectives on symptom distress, intention to discuss symptoms, and actual symptom discussion in medical oncology visits. METHODS: This was a cross-sectional descriptive study. Ninety-four patients provided demographic and clinical information and completed the Memorial Symptom Assessment Scale. Patients also answered questions about their plans for communication-and after the visit, their actual communication-with their medical team about their symptoms. RESULTS: Patients reported many symptoms by questionnaire; however, they did not plan to discuss-nor actually discussed-most of their symptoms with their HCPs. For all symptoms, fewer than 42% of patients with the symptom intended to discuss it (except for lack of energy and pain) and less than 50% actually discussed the symptom. For bothersome symptoms, less than 42% of those with the symptom intended to discuss it (except for lack of energy) and less than 40% actually discussed the symptom. Psychological symptoms were endorsed by 24-41% of patients, depending on the symptom; however, of those endorsing a symptom, most did not discuss it with an HCP. CONCLUSIONS: Results of this study support the perception of communication gaps between patients and HCPs about symptoms. Better understanding of these gaps is needed to ensure that patient-centered care is delivered and that patients' symptoms can be appropriately managed in oncology clinics.

Rates and predictors of psychotherapy utilization after psychosocial evaluation for stem cell transplant.

OBJECTIVE: Although standard of care prior to hematopoietic stem cell transplantation (HSCT) includes a psychosocial evaluation, little is known about the rate and predictors of psychotherapy utilization among patients presenting for pre-HSCT evaluations. This study aimed to examine the proportion of patients undergoing pre-HSCT evaluations who subsequently utilize psychotherapy services and to explore predictive factors, including distress, anxiety, depression, and quality of life (QoL). METHODS: Participants were a cross-sectional sample of 351 HSCT candidates at an NCI-designated comprehensive cancer center. Questionnaires assessing distress, anxiety, depression, and QoL were administered using validated instruments. RESULTS: A subset of patients, representing 14% of the sample, utilized psychotherapy services. Relative to patients who did not utilize psychological services, patients who followed-up with psychotherapy reported significantly more depressive and anxious symptoms (P < .001) and endorsed worse QoL on the Functional Assessment of Cancer Therapy-General. (P = .04). Of note, a subset of patients who utilized psychotherapy services reported low levels of distress (67%), depression (13%), or anxiety (13%); on the other hand, a subset of patients reported moderate-to-high levels of distress (25%), depression (71%), or anxiety (60%) but did not utilize services. CONCLUSIONS: Results indicate that only a small subset of patients presenting for pre-HSCT psychosocial evaluation subsequently utilized psychotherapy services. Most patients who reported psychosocial concerns and who could potentially benefit from intervention did not use psychotherapy services. Further research is necessary to help clarify barriers to psychotherapy service utilization among HSCT patients and to help improve uptake among high-need patients.

Lack of Patient-Clinician Concordance in Cancer Patients: Its Relation With Patient Variables.

CONTEXT: Patients with cancer are bothered by its diagnosis, treatment, and associated uncertainty. Lack of concordance (LOC) of patients' reporting of their symptoms and quality of life (QOL) with that of their clinicians has been observed in cancer care. However, information regarding the reporting of patients' bother due to aspects of cancer experience and their clinicians' assessment is lacking. OBJECTIVES: The objective was to describe cancer patients' bother due to aspects of their disease experience and explore the concordance (LOC) or a lack thereof between patients' and clinicians' reporting of patients' bother and factors associated with it. METHODS: Data from a prospective study of cancer patients' symptoms were analyzed. LOC was defined as any discrepancy between patient-clinician pairs in reporting patients' bother due to disease, cancer treatment, comorbidity, and side effects of symptom management. The relation of LOC to patients' QOL and distress was also explored. RESULTS: Of the 2597 patients analyzed, a perfect concordance was observed in 37%-42%. Clinicians underestimated the severity of bother in 62%-76% of discordant cases. LOC was significantly associated with patient-reported distress and poor QOL. Referral for symptom management was associated with the clinician's rating of patients' bother, and LOC was associated with likelihood of poor compliance with recommendations for symptom management. CONCLUSION: Majority of clinicians tended to underestimate cancer patients' bother, and this was associated with poor QOL of cancer patients and their distress. Future studies should examine the LOC and its correlates to confirm the results of this study.

Comparing the symptom experience of cancer patients and non-cancer patients.

PURPOSE: Symptom burden is an established concept in oncology encompassing the presence and severity of symptoms experienced by cancer patients. Few studies have examined differences in symptom burden between cancer patients and non-cancer patients. This study seeks to examine the differences in symptom burden between cancer patients (CP) and non-cancer patients (NCP) in order to better understand symptom burden in both populations. METHODS: Two groups of patients completed the Memorial Symptom Assessment Scale: 301 patients from a general medical clinic and 558 cancer patients from a cancer tumor registry. Participants provided demographic information-age, race/ethnicity, and sex and completed the Memorial Symptom Assessment Scale. Medical comorbidity was also measured. RESULTS: Most symptoms were more common in CP, except for pain, which was more prevalent in the NCP (45% of CP vs. 54% of NCP, p < .05). There was no difference in prevalence for the following symptoms: dry mouth, mouth sores, feeling nervous, worry, cough, and dizziness. The CP had greater mean MSAS Total scores (0.53 vs. 0.43, p < .01), number of symptoms (9.11 vs. 6.13, p < .01), and psychological subscale scores (0.77 vs. 0.64, p < .05). There was no difference by group in the physical nor the GDI subscale scores. CONCLUSION: The results of this study support the perception that cancer patients have greater symptom burden. There were some unexpected results, particularly in terms of pain, which was more common in NCP and other symptoms that were experienced equally in both patient populations.

Cancer-related hair loss: a selective review of the alopecia research literature.

OBJECTIVE: Alopecia is a common side effect of cancer treatment, affecting approximately 65% of patients. Healthcare providers and allied staff recognize that alopecia is distressing for people with cancer; however, they are often unaware of the extent of distress or the great efforts expended by patients to cope with hair loss. This study reviews the existing literature regarding the psychosocial impact of alopecia on cancer survivors and the coping strategies they use to manage hair loss. METHODS: We searched for studies examining the psychosocial effects of alopecia on cancer survivors using PubMed and PsycInfo databases and Google Scholar. RESULTS: A total of 36 peer-reviewed articles were deemed relevant to be included in this review. In this review, alopecia was consistently ranked as one of the most distressing side effects of cancer treatment. Survivors report that hair loss disrupts how they experience their bodies, interact with others, and conceptualize their body image beyond treatment. Although upsetting for both genders, the scarce literature that exists suggests that there may be some gender-specific aspects of experiencing cancer-related hair loss. Cancer survivors cope with alopecia in numerous ways and often rely on strategies such as concealment, social support, social avoidance, information seeking, and behavioral rehearsal. CONCLUSIONS: Treatment-induced alopecia negatively affects millions of survivors each year in unique and nuanced ways. We hope that survivors' healthcare providers and loved ones may better appreciate the psychosocial challenges they experience related to hair loss, as well as the strategies they use to cope. Further research is much needed to better understand cancer-related alopecia. Copyright © 2015 John Wiley & Sons, Ltd.

Resilience in adults with cancer: development of a conceptual model.

OBJECTIVE: Resilience is a construct addressed in the psycho-oncology literature and is especially relevant to cancer survivorship. The purpose of this paper is to propose a model for resilience that is specific to adults diagnosed with cancer. METHODS: To establish the proposed model, a brief review of the various definitions of resilience and of the resilience literature in oncology is provided. RESULTS: The proposed model includes baseline attributes (personal and environmental) which impact how an individual responds to an adverse event, which in this paper is cancer-related. The survivor has an initial response that fits somewhere on the distress-resilience continuum; however, post-cancer experiences (and interventions) can modify the initial response through a process of recalibration. CONCLUSIONS: The literature reviewed indicates that resilience is a common response to cancer diagnosis or treatment. The proposed model supports the view of resilience as both an outcome and a dynamic process. Given the process of recalibration, a discussion is provided of interventions that might facilitate resilience in adults with cancer.

The persistence of symptom burden: symptom experience and quality of life of cancer patients across one year.

PURPOSE: The purpose of this longitudinal study was to track the symptom experience in a sample of cancer patients, determine the persistence of cancer symptoms and symptom burden, and examine the relationship between symptoms and QOL over time. METHODS: Five hundred forty-two patients provided longitudinal data, completing surveys over a 12-month period. Patients had breast, colorectal, gynecologic, lung, or prostate cancer with stage 1, 2, or 3 disease. Surveys included the Memorial Symptom Assessment Scale and the Functional Assessment of Cancer Therapy-General Scale and were administered every 3 months. Demographic and clinical information and comorbidities were collected from the tumor registry. RESULTS: The number and type of symptoms experienced by patients varied by cancer type, but about 90% of patients reported one or more symptoms--with prostate cancer patients reporting fewer symptoms and colorectal patients, more symptoms. Prostate patients also had the lowest symptom burden at every time point. Overall, symptom burden decreased over time, as did the Physical subscale for the MSAS. Quality of life was stable over time, except for physical well-being, which improved. Quality of life was negatively correlated with symptom burden at every time point. CONCLUSIONS: The differences in symptom experience by cancer type suggest that assessment and management of symptoms must be individually tailored or at least adjusted by cancer type. While symptom burden decreased over time, residual symptom burden was still noteworthy. As quality of life was persistently negatively correlated with symptom burden, the results suggest the need for comprehensive symptom assessment and management.

A prospective longitudinal clinical trial evaluating quality of life after breast-conserving surgery and high-dose-rate interstitial brachytherapy for early-stage breast cancer.

PURPOSE: To prospectively examine quality of life (QOL) of patients with early stage breast cancer treated with accelerated partial breast irradiation (APBI) using high-dose-rate (HDR) interstitial brachytherapy. METHODS AND MATERIALS: Between March 2004 and December 2008, 151 patients with early stage breast cancer were enrolled in a phase 2 prospective clinical trial. Eligible patients included those with Tis-T2 tumors measuring ≤3 cm excised with negative surgical margins and with no nodal involvement. Patients received 3.4 Gy twice daily to a total dose of 34 Gy. QOL was measured using European Organization for Research and Treatment of Cancer (EORTC) QLQ-C30, version 3.0, and QLQ-BR23 questionnaires. The QLQ-C30 and QLQ-BR23 questionnaires were evaluated during pretreatment and then at 6 to 8 weeks, 3 to 4 months, 6 to 8 months, and 1 and 2 years after treatment. RESULTS: The median follow-up was 55 months. Breast symptom scores remained stable in the months after treatment, and they significantly improved 6 to 8 months after treatment. Scores for emotional functioning, social functioning, and future perspective showed significant improvement 2 years after treatment. Symptomatic fat necrosis was associated with several changes in QOL, including increased pain, breast symptoms, systemic treatment side effects, dyspnea, and fatigue, as well as decreased role functioning, emotional functioning, and social functioning. CONCLUSIONS: HDR multicatheter interstitial brachytherapy was well tolerated, with no significant detrimental effect on measured QOL scales/items through 2 years of follow-up. Compared to pretreatment scores, there was improvement in breast symptoms, emotional functioning, social functioning, and future perspective 2 years after treatment.

Distress management.

The integration of psychosocial care into the routine care of all patients with cancer is increasingly being recognized as the new standard of care. These NCCN Clinical Practice Guidelines in Oncology for Distress Management discuss the identification and treatment of psychosocial problems in patients with cancer. They are intended to assist oncology teams identify patients who require referral to psychosocial resources and to give oncology teams guidance on interventions for patients with mild distress to ensure that all patients with distress are recognized and treated.

Palliative care.

These guidelines were developed and updated by an interdisciplinary group of experts based on clinical experience and available scientific evidence. The goal of these guidelines is to help patients with cancer experience the best quality of life possible throughout the illness trajectory by providing guidance for the primary oncology team for symptom screening, assessment, palliative care interventions, reassessment, and afterdeath care. Palliative care should be initiated by the primary oncology team and augmented by collaboration with an interdisciplinary team of palliative care experts.