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.
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.
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.
The suicide rate is elevated among survivors of head and neck cancer and is higher than the rate among cancer survivors in general as well as the general US population. Survivors of head and neck cancer are almost 2 times more likely to die from suicide compared with survivors of nonhead and neck cancers.
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.
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 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.
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.