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.

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.

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.

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.

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.

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.

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.

Psychosocial aspects of caregiving: perceptions of cancer patients and family caregivers.

PURPOSE: The care of cancer patients involves collaboration among health care professionals, patients, and family caregivers. As health care has evolved, more complex and challenging care is provided in the home, usually with the support of family members or friends. The aim of the study was to examine perceived needs regarding the psychosocial tasks of caregiving as reported by patients and caregivers. We also evaluated the association of demographic and clinical variables with self-reported caregiving needs. METHODS: Convenience samples of 100 cancer patients and 100 family caregivers were recruited in outpatient medical and radiation oncology waiting areas-the patients and caregivers were not matched dyads. Both groups completed a survey about their perceptions of caregiving tasks, including how difficult the tasks were for them to do. Demographic information was also provided by participants. RESULTS: Caregivers reported providing more help in dealing with feelings than patients endorsed needing. Caregivers were also more likely than patients to report the psychosocial aspects of caregiving were more difficult for them. Lastly, caregivers were more likely to report helping with logistical issues in comparison with patients expressing this need. Race, length of time since diagnosis, and age were associated with patients' expressed needs, while only number of hours spent providing care was associated with the caregivers' reporting of care activities. CONCLUSIONS: Our results suggest that patients may underestimate how difficult caregivers perceive the psychosocial aspects of caregiving to be. Also, it seems that caregivers tend to take on the psychosocial aspects of caregiving, although patients do not tend to report this need. Caregiving needs were only minimally associated with demographic variables, as was participation in caregiving tasks.

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).

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.

Documenting the symptom experience of cancer patients.

BACKGROUND: Cancer patients experience symptoms associated with their disease, treatment, and comorbidities. Symptom experience is complicated, reflecting symptom prevalence, frequency, and severity. Symptom burden is associated with treatment tolerance as well as patients' quality of life (QOL). OBJECTIVES: The purpose of this study was to document the symptom experience and QOL of patients with commonly diagnosed cancers. The relationship between symptoms and QOL was also explored. METHODS: A convenience sample of patients with the five most common cancers at a comprehensive cancer center completed surveys assessing symptom experience (Memorial Symptom Assessment Survey) and QOL (Functional Assessment of Cancer Therapy). Patients completed surveys at baseline and at 3, 6, 9, and 12 months thereafter. This article describes the study's baseline findings. RESULTS: Surveys were completed by 558 cancer patients with breast, colorectal, gynecologic, lung, or prostate cancer. Patients reported an average of 9.1 symptoms, with symptom experience varying by cancer type. The mean overall QOL for the total sample was 85.1, with results differing by cancer type. Prostate cancer patients reported the lowest symptom burden and the highest QOL. LIMITATIONS: The sample was limited in terms of racial diversity. Because of the method of recruitment, baseline data were collected 6-8 months after diagnosis, meaning that participants were at various stages of treatment. CONCLUSIONS: The symptom experience of cancer patients varies widely depending on cancer type. Nevertheless, most patients report symptoms, regardless of whether or not they are currently receiving treatment. Patients' QOL is inversely related to their symptom burden.

The Cancer Pain Inventory: preliminary development and validation.

OBJECTIVE: The purpose of this study was to develop a Cancer Pain Inventory (CPI) that measures cancer patients' beliefs and concerns about pain. This paper describes development and pilot testing of a preliminary version of the CPI and describes its psychometric properties including its reliability and validity relative to established pain measures. METHODS: Subjects were recruited from inpatient and outpatient oncology services of an NCI-designated comprehensive cancer center. Participants completed the 50 potential CPI items and these standard measures-Orientation-Memory-Concentration Test, Survey of Pain Attitudes, Brief Pain Inventory, Pain Disability Index, and Center for Epidemiological Studies-Depression Scale. The magnitude and significance of associations between the CPI and the other measures were examined. RESULTS: Of 366 patients who were eligible and agreed to participate in the study, 262 completed the questionnaires. Principal components analyses were used to select items most appropriate for retention in the preliminary version of the CPI and to describe its factor structure. Based on the content of items that loaded on each factor, the five factors were labeled as Catastrophizing, Interference with Functioning, Stoicism, Social Aspects, and Concerns about Pain Medication. Correlations between the CPI and other measures supported construct validity of the five CPI factors. CONCLUSIONS: The results supported the validity of the CPI as a measure of five constructs relevant to the experience of pain in the cancer setting. The results also underscored the presence of unique features of cancer-related pain that clearly differ from commonly recognized dimensions of chronic, non-cancer-related pain.

Providing care for the "whole patient" in the cancer setting: the psycho-oncology consultation model of patient care.

This paper describes a psycho-oncology consultation model of care (POCM) that provides a framework for psychosocial clinical work with cancer patients. Goals for care are addressed that follow the recommendations of the Institute of Medicine report advocating care for the "whole patient." Specific goals include reducing distress and symptoms, building on the patient's existing strengths, enhancing self-efficacy, expanding the patient's repertoire of healthy coping strategies, and addressing informational needs. Specific interventions are described that clinicians can implement in order to address the above goals. The paper also addresses the unique challenges encountered in working with cancer patients, as well as programmatic difficulties that are inherent in providing mental health care in a medical setting.

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.

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.