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.

Development of a psychosocial oncology core curriculum for multidisciplinary education and training: Initial content validation using the modified Delphi Method.

OBJECTIVE: Despite its four decade history, the multidisciplinary specialty of psychosocial oncology (PSO) has no official consensus on core content. In 2014, the American Psychosocial Oncology Society (APOS) Board charged the APOS Professional Education Committee with outlining curricular content needed for core competence. METHODS: Content validation was completed using a four-phase modified Delphi Method. During Phase I, a Professional Education Committee subgroup proposed domains and items, which were rated by the APOS Fellows and Board via online survey. During Phase II, Fellows completed a second, revised survey. Phase III incorporated early career members. Developmental and diversity items were integrated into each domain. In Phase IV, a larger group of subject matter experts were surveyed, with feedback incorporated. Validation across phases involved average rating thresholds, intraclass correlations, and final percent agreement. RESULTS: The Delphi Method supported 12 content domains: Cancer Basics, Psychosocial Oncology, Professional Development, Ethics, Emotional/Psychological Concerns, Sexuality and Relationship Concerns, Spiritual/Religious Concerns, Healthcare Communication and Decision Making, Social/Practical Problems, Caregiver Concerns, Cognitive Concerns, Physical Symptoms and Psychosocial Assessment/Treatment. High levels of agreement were achieved across domains (86%-100%) and items, with no significant rating differences by discipline. CONCLUSIONS: This proposed core content can enhance and standardize education and training in PSO including APOS' Virtual Psychosocial Oncology Core Curriculum, focused on broadly expanding the PSO workforce, particularly in underserved areas. Next steps include development of core competencies and establishment of online training modules based on this content validation.

Framework for planning the delivery of psychosocial oncology services: An American psychosocial oncology society task force report.

OBJECTIVE: While screening for psychosocial distress is now the standard of care in oncology, little guidance is available on how best to deliver services in response to identified needs. The American Psychosocial Oncology Society (APOS) convened a task force with the goal of creating a framework that could aid in planning services and justifying requests for resources. METHODS: Ten experts from multiple disciplines within psychosocial oncology served on the task force, first meeting together as a larger group over 2 days to set an agenda and then subsequently working in smaller teams to execute the goals. The task force used consensus methods for developing recommendations. RESULTS: Three principles were identified for the framework. First, psychosocial oncology is a key component of population health, and population-based approaches to care delivery are required. Second, several key parameters shape psychosocial oncology services: resources, aims, and scope. To guide resource allocation, example priorities were identified for the aims and scope of services. Finally, cancer care centers should strive to ensure the delivery of high-quality psychosocial oncology care across all components of care. A range of practices was ranked by their potential contributions to achieving that goal. CONCLUSIONS: This framework may aid in planning, evaluating, and refining the delivery of responsive psychosocial oncology services.

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.

Suicide risk among cancer survivors: Head and neck versus other cancers.

BACKGROUND: Cancer survivors face psychosocial issues that increase their risk of suicide. This study examined the risk of suicide across cancer sites, with a focus on survivors of head and neck cancer (HNC). METHODS: The Surveillance, Epidemiology, and End Results 18-registry database (from 2000 to 2014) was queried for the top 20 cancer sites in the database, including HNC. The outcome of interest was suicide as a cause of death. The mortality rate from suicide was estimated for HNC sites and was compared with rates for 19 other cancer sites that were included in the study. Poisson regression was used to estimate adjusted rate ratios (aRRs) and 95% confidence intervals (CIs) for 1) HNC versus non-HNC sites (the other 19 cancer sites combined), and 2) HNC versus each individual cancer site. Models were stratified by sex, controlling for race, marital status, age, year, and stage at diagnosis. RESULTS: There were 404 suicides among 151,167 HNC survivors from 2000 to 2014, yielding a suicide rate of 63.4 suicides per 100,000 person-years. In this timeframe, there were 4493 suicides observed among 4219,097 cancer survivors in the study sample, yielding an incidence rate of 23.6 suicides per 100,000 person-years. Compared with survivors of other cancers, survivors of HNC were almost 2 times more likely to die from suicide (aRR, 1.97; 95% CI, 1.77-2.19). There was a 27% increase in the risk of suicide among HNC survivors during the period from 2010 to 2014 (aRR, 1.27; 95% CI, 1.16-1.38) compared with the period from 2000 to 2004. CONCLUSIONS: Although survival rates in cancer have improved because of improved treatments, the risk of death by suicide remains a problem for cancer survivors, particularly those with HNC.

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.

Prevalence and sociodemographic factors associated with depression among hospitalized patients with head and neck cancer-Results from a national study.

OBJECTIVE: Depression is a significant problem for patients with head and neck cancer (HNC). This study explored the prevalence of and sociodemographic and clinical factors associated with depression, among patients with HNC. METHODS: We performed a retrospective analysis of 71 541 cases of HNC using a national dataset, the Nationwide Inpatient Sample, from 2008 to 2013. Weighted, multivariate logistic regression analysis estimated association between sociodemographic/clinical factors and tumor anatomical site with diagnosis of a major depressive disorder. RESULTS: Overall prevalence of major depressive disorder in HNC was 9.3%; highest prevalence was found in patients with laryngeal cancer (28.5%). Compared with laryngeal cancer, there were lower odds of depression among patients with oral cavity cancer (adjusted odds ratio [aOR] = 0.90; 95% CI, 0.84-0.97) and other anatomic sites (aOR = 0.87; 95% CI, 0.81-0.94), except oropharyngeal cancer (aOR = 1.00; 95% CI, 0.93-1.08). For every unit increase in comorbidities, odds of depression increased by 20% (aOR = 1.20; 95% CI, 1.19-1.23). Sociodemographic factors associated with increased odds of depression included being female (aOR = 1.77; 95% CI, 1.68-1.87), white (aOR = 1.75; 95% CI, 1.59-1.92), and having Medicaid (aOR = 1.09; 95% CI, 1.01-1.19) or Medicare insurance (aOR = 1.19; 95% CI, 1.10-1.27). CONCLUSIONS: Depression odds vary depending on HNC anatomic site, and one in four patients with laryngeal cancer may be depressed. Since depression is prevalent in this survivor cohort, it is important that psychosocial assessment and intervention are integrated into mainstream clinical care for patients with HNC.

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.

Psychosocial staffing at National Comprehensive Cancer Network member institutions: data from leading cancer centers.

OBJECTIVE: The National Comprehensive Cancer Network (NCCN) is comprised of 25 National Cancer Institute-designated cancer centers and arguably could thus set the standard for optimal psychosocial staffing for cancer centers; therefore, information was sought from NCCN Member Institutions about their current staffing for psychosocial services. These findings are put into perspective given the limited existing literature and consensus reports. METHODS: The NCCN Best Practices Committee surveyed member institutions about their staffing for psychosocial services. The survey was administered electronically in the winter of 2012. RESULTS: The survey was completed by 20 cancer centers. Across institutions, case managers and mental health therapists, typically social workers, were utilized most frequently to provide psychosocial services (67% of full-time-equivalents (FTEs)), with other psychosocial professionals also represented but less consistently. Most psychosocial services are institutionally funded (ranging from 64 to 100%), although additional sources of support include fee for service and grant funding. Training of psychosocial providers is unevenly distributed across responding sites, ranging from 92% of institutions having training programs for psychiatrists to 36% having training programs for mental health therapists. CONCLUSIONS: There was variability among the institutions in terms of patient volume, psychosocial services provided, and psychosocial staff employed. As accreditation standards are implemented that provide impetus for psychosocial services in oncology, it is hoped that greater clarity will develop concerning staffing for psychosocial services and uptake of these services by patients with cancer.

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.

Recommendations for the implementation of distress screening programs in cancer centers: report from the American Psychosocial Oncology Society (APOS), Association of Oncology Social Work (AOSW), and Oncology Nursing Society (ONS) joint task force.

In 2015, the American College of Surgeons (ACoS) Commission on Cancer will require cancer centers to implement screening programs for psychosocial distress as a new criterion for accreditation. A joint task force from the American Psychosocial Oncology Society, the Association of Oncology Social Work, and the Oncology Nursing Society developed consensus-based recommendations to guide the implementation of this requirement. In this review, the authors provide recommendations regarding each of the 6 components necessary to meet the ACoS standard: 1) inclusion of psychosocial representation on the cancer committee, 2) timing of screening, 3) method/mode of screening, 4) tools for screening, 5) assessment and referral, and 6) documentation.

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.

The state of psychosocial services in cancer care in the United States.

OBJECTIVE: In 2009, the APOS commissioned a survey of its members and attendees of the annual meetings in 2008 and 2009. The goal of the survey was to assess the scope of psychosocial support services for cancer patients in the USA. METHODS: Two hundred thirty-three individuals (27% response rate) completed the survey, which included questions assessing the extent to which respondents' institutions provided informational and psychosocial support services and conducted screening for psychosocial distress. RESULTS: Respondents were primarily psychologists, although oncologists, nurses, social workers, and others were represented, as well. A broad array of informational and support services were endorsed as being provided to cancer patients, both at no charge or for a fee. Respondents identified social workers as the professionals most often providing psychosocial services to cancer patients. Respondents also indicated that most psychosocial services have not been tailored to fit a culturally diverse population. Furthermore, most of the organizations represented in the survey do not routinely screen cancer patients for psychosocial distress. CONCLUSIONS: A broad range of psychosocial services are provided in cancer treatment settings; however, despite National Comprehensive Cancer Network and Institute of Medicine recommendations, routine screening for distress is not offered in a majority of cancer care organizations. Despite the racial, ethnic, cultural, and linguistic diversity of the US population, most organizations have not adapted their educational materials nor their psychosocial services to meet the needs of a diverse patient population.

Developing a systemic program for compassion fatigue.

The effort in hospitals to improve the patient experience has yielded a new impetus to address compassion fatigue (CF), a combination of secondary traumatic stress and burnout. Over the last 3 years, Barnes-Jewish Hospital has developed a systemic program for CF resiliency. An initial evaluation of the extent to which CF was affecting the hospital's oncology staff led to the formal implementation of a resiliency program for oncology registered nurses. The success of that program ultimately led to the implementation of a hospital-wide resiliency program, designed to help professional caregivers understand CF, recognize the physical, mental, and emotional effects of stress, and adopt resiliency strategies. The voluntary program has been very well received by participants, and a formal evaluation shows promising results with a decline in secondary traumatic stress and burnout among participants. Developing an institutional culture of recognition and support for CF is critical for health care organizations. Establishing such a culture may help managers proactively create work environments that provide opportunities for connection and support among staff. Compassion fatigue training allows professional caregivers to reconnect to their personal mission and then truly begin to connect with an organization's values and mission.