Distress levels in patients with oropharyngeal vs. non-oropharyngeal squamous cell carcinomas of the head and neck over 1 year after diagnosis: a retrospective cohort study.

BACKGROUND: Human papillomavirus (HPV)-related cancers have been associated with different demographic profiles and disease characteristics than HPV-unrelated cancers in head and neck patients, but distress and other symptoms have not been compared. The aim of this study was to assess whether distress levels, fatigue, pain, anxiety, depression, and common psychological and practical problems differ between head and neck cancer patients with HPV-related vs. HPV-unrelated carcinomas (using oropharyngeal carcinoma (OPC) and non-OPC cancers as surrogates for HPV status). METHODS: Distress, depression, anxiety, fatigue, pain, and common problems were examined in 56 OPC and 90 non-OPC patients at 4 timepoints during the first year following diagnosis. Two-level hierarchical linear modeling was used to examine effects. RESULTS: The HPV-related OPC group was more likely to be younger (p = 0.05), Caucasian (p = 0.001), non-smokers (p = 0.01), earn more (p = 0.04), and present with more advanced stage (p < 0.0001). At baseline, OPC patients reported only higher pain scores (p = 0.01) than non-OPC patients. Total problems decreased more in the OPC group (p = 0.08) than the non-OPC group from baseline to 12-month follow-up. In both groups, scores on distress, depression, psychosocial problems, and practical problems decreased similarly over time. CONCLUSIONS: Despite a difference in the clinico-demographic characteristics of HPV-related vs. HPV-unrelated patients, only baseline pain levels and total problems over time differed between the two groups.

A longitudinal analysis of symptom clusters in cancer patients and their sociodemographic predictors.

CONTEXT: Exploring the relationships between concurrent symptoms or "symptom clusters" (SCs) longitudinally may complement the knowledge gained from the traditional approach of examining individual symptoms or SCs crosssectionally. OBJECTIVES: To identify consistent SCs over the course of one year and determine the possible associations between SCs and demographic and medical characteristics, and between SCs and emotional distress. METHODS: This study was an exploratory longitudinal analysis of SCs in a large sample of newly diagnosed cancer patients. Patients provided symptom assessment data at baseline, three, six, and 12 months. A factor analysis was conducted (controlling for the patient over time) on pain, fatigue, anxiety, depression, sleep, weight change, and food intake items to identify clusters. A panel regression on each cluster explored associations with demographic and medical characteristics and distress. RESULTS: In total, 877 patients provided baseline data, with 505 retained at 12 months. Three SCs explained 71% of the variance. The somatic cluster included pain, fatigue, and sleep; the psychological cluster included anxiety and depression; and the nutrition cluster consisted of weight and food intake. Low income and treatment with radiation or chemotherapy predicted higher somatic symptom burden. Younger age, being female, low income, and treatment with surgery predicted more psychological symptomatology. Older age and treatment with surgery predicted higher nutritional burden. Patients with higher somatic, psychological, and nutritional symptom burden reported higher distress. CONCLUSION: The presence of SCs across the first year of diagnosis supports the need for routine and ongoing screening for the range of symptoms that may be experienced by patients. Further work is needed to develop interventions that better target individual symptoms that cluster, as well as the entire cluster itself.

Implementing routine screening for distress, the sixth vital sign, for patients with head and neck and neurologic cancers.

This study examined the benefits of incorporating screening for distress as a routine part of care for patients with head and neck and neurologic cancers in a tertiary cancer center. Using a comparative 2-cohort pre-post implementation sequential design, consecutive outpatients with head and neck and neurologic cancers were recruited into 2 separate cohorts. Cohort 1 included patients attending clinics during April 2010, before the implementation of the screening program. The program was then implemented and patients completed the Screening for Distress Minimum Dataset (the Edmonton Symptom Assessment System [ESAS] and the Canadian Problem Checklist [CPC]) at each clinic visit. Cohort 2 included patients attending clinics during March 2011. Consenting patients completed screening and outcome measures (ESAS, CPC, and either the Functional Assessment of Cancer Therapy-Brain or the Functional Assessment of Cancer Therapy-Head and Neck). A total of 146 patients (78 head and neck and 68 neurologic) provided data for Cohort 1, and 143 (81 head and neck and 62 neurologic) provided data for Cohort 2. Compared with Cohort 1, patients with neurologic cancers in Cohort 2 reported significantly higher scores on the Functional Assessment of Cancer Therapy: General total and emotional quality of life subscale; fewer high scores (≥ 4) on the ESAS breathlessness item; and fewer problems with fears/worries, frustration/anger, finding meaning in life, and worry about friends/family. Head and neck patients in Cohort 2 reported significantly higher emotional quality of life and fewer problems with eating and weight than those in Cohort 1. Although no definitive causal attributions can be made, patients exposed to routine screening for distress reported better well-being and fewer emotional, physical, and practical problems than historical controls.

Risk factors for continuous distress over a 12-month period in newly diagnosed cancer outpatients.

This analysis examined demographic and medical factors associated with continuous distress in the year following cancer diagnosis. Patients completed the Distress Thermometer, Fatigue and Pain Thermometers, and anxiety and depression measures, at baseline, 3-, 6-, and 12 months. A total of 480 patients were grouped into three trajectories for distress, pain, fatigue, anxiety, and depression. Logistic regression analyses were conducted to determine risk factors associated with each symptom pattern. Females were more likely to report continuous distress. Predictors of the remaining outcomes included younger age; a diagnosis of head and neck, gastrointestinal, or prostate cancer; and receipt of chemotherapy and radiation therapy. By identifying risk factors for continuous distress, interventions can be implemented more efficiently and targeted to those who are at an elevated risk.

Screening for distress, the sixth vital sign: examining self-referral in people with cancer over a one-year period.

PURPOSE: Although research has indicated a diagnosis of cancer is most often distressing for patients and their families, few studies have examined which patients access resources to manage distress or how distress levels affect resource utilization. This study explored psychosocial and supportive care resource utilization in a large cancer population at a Canadian tertiary cancer centre over a 12-month period in a usual care setting. METHODS: Patients who were new to the Tom Baker Cancer Centre completed the Distress Thermometer, the Pain and Fatigue Thermometers, the Psychological Screen for Cancer (Part C) that measures anxiety and depression, self-report questions on resources accessed and a demographic form at baseline, 3, 6 and 12 months. No feedback or specific triage to services was provided in order to observe usual care practices. RESULTS: A total of 714 patients provided baseline data with 505 retained at 12 months. Twenty-four percent indicated they accessed at least one service (e.g. individual counselling, nutritionist or resource social worker) over the 12 months. Patients who were older, less educated and with lower income were less likely to access services. People who reported higher symptom burden were more likely to access services at each time point. CONCLUSIONS: Overall levels of access of psychosocial services were relatively low in this population and varied by socio-demographic variables and symptom burden. Routine monitoring of psychosocial, practical and physical concerns is a potential strategy for targeting individuals who may require additional information or support in accessing available services to manage their concerns.

Screening for distress, the sixth vital sign, in lung cancer patients: effects on pain, fatigue, and common problems--secondary outcomes of a randomized controlled trial.

BACKGROUND: This randomized controlled trial examined the impact of an online routine screening for distress program on physical symptoms and common psychosocial and practical problems in lung cancer outpatients. METHOD: Patients were randomly assigned to either the minimal screening group (the Distress Thermometer plus usual care); full screening group (Distress Thermometer, Canadian Problem Checklist (CPC), Pain Thermometer, Fatigue Thermometer, and the Psychological Screen for Cancer Part C, with a personalized report summarizing concerns); or triage (full screening plus option of personalized phone triage). Outcomes included pain, fatigue and psychosocial, practical and physical problems. Patients were reassessed 3 months later. RESULTS: A total of 549 lung patients completed baseline measures (89% of eligible patients) and 65.9% were retained at 3 months. At 3 months follow-up, significantly fewer patients in the triage group (32.1%) reported pain compared with the minimal screening group (49.6%), but the triage and full screening groups were not significantly different from one another. Patients in the triage group reported fewer problems with coping compared with the minimal and full screening groups and fewer problems with family conflict compared with the minimal screening group. Full screening patients reported fewer problems with breathlessness compared with the minimal screening group. No differences were found among groups in fatigue. Referrals were not associated with changes in outcomes over time. CONCLUSIONS: Routine screening for distress followed by personalized triage resulted in the most benefit for lung patients, with fewer fully screened and triaged patients reporting physical symptoms and psychosocial problems than those only minimally screened.

What goes up does not always come down: patterns of distress, physical and psychosocial morbidity in people with cancer over a one year period.

BACKGROUND: As the concept of distress as the 6th vital sign gains strength in cancer care, research on the experience of patients is critical. This study longitudinally examined patients' physical and psychosocial concerns over the year following diagnosis. METHODS: Between July 2007 and February 2008, patients attending a large tertiary cancer centre were recruited to participate in a study examining their levels of distress, pain, fatigue, depression and anxiety over a year. RESULTS: A total of 877 patients provided baseline data with 620, 589 and 505 retained at 3, 6 and 12 months, respectively. Overall, levels of distress, depression and anxiety decreased significantly over the study period. No significant changes were found in levels of pain or fatigue. Demographics (being unmarried) and medical interventions (particularly having radiation therapy) predicted persistent distress, anxiety and depression, whereas receiving psychosocial support predicted decreased levels of distress, anxiety and depression. Some patients reported continued clinical levels of distress (29%), pain (19%) and fatigue (40%) 12 months post diagnosis. DISCUSSION: For some people, distress, depression, and anxiety may be transient and decrease over time, but for others they may be sustained. Pain and fatigue may remain present in many cancer patients. There is a need to modify current clinical practice to facilitate the appropriate assessment and management of distress.

Implementing screening for distress, the 6th vital sign: a Canadian strategy for changing practice.

OBJECTIVE: Distress is prevalent among cancer patients at all stages of illness and has been endorsed as the 6th Vital Sign in cancer care. Despite its prevalence, and calls to be monitored, few cancer programs are Screening for Distress in a standardized manner. In this paper, the implementation strategy employed in Canada to change practice by integrating Screening for Distress in routine care is described. METHODS: The process from inception of the concept of distress to the implementation of Screening for Distress is discussed. Pioneering work pertinent in laying the foundation for Screening for Distress as a National initiative is highlighted. Additionally, the experience of four jurisdictions currently Screening for Distress is utilized to demonstrate steps to successful implementation and strategies for overcoming challenges. RESULTS: Integrating Screening for Distress into practice requires endorsements from key stakeholders, developing and disseminating national recommendations and guidelines, and utilizing a coordinated and standardized method focused on practice change. At a local level successful implementations engage stakeholders, provide thorough and targeted education, establish interprofesionnal teams, and utilize a phased approach to implementation. Common challenges cited include time, buy-in and lack of resources. CONCLUSIONS: Establishing a national approach to implementing Screening for Distress is both feasible and beneficial. A coordinated approach encourages collaboration beyond the walls of any particular center and provides the opportunity for all patients to be provided with improved person-centered care.

Screening for distress in lung and breast cancer outpatients: a randomized controlled trial.

PURPOSE: Distress has been recognized as the sixth vital sign in cancer care and several guidelines recommend routine screening. Despite this, screening for distress is rarely conducted and infrequently evaluated. METHODS: A program of routine online screening for distress was implemented for new patients with breast and lung cancer. Patients were randomly assigned to one of three conditions: (1) minimal screening: the distress thermometer (DT) only plus usual care; (2) full screening: DT, problem checklist, Psychological Screen for Cancer part C measuring anxiety and depression, a personalized report summarizing concerns and the report on the medical file; or (3) triage: full screening plus optional personalized phone triage with referral to resources. Patients in all conditions received an information packet and were reassessed 3 months later with the full screening battery. RESULTS: Five hundred eighty-five patients with breast cancer and 549 patients with lung cancer were assessed at baseline (89% of all patients), and 75.5% retained for follow-up. High prevalence of baseline distress was found across patients. Twenty percent fewer patients with lung cancer in triage continued to have high distress at follow-up compared to those in the other two groups, and patients with breast cancer in the full screening and triage conditions showed lower distress at follow-up than those in minimal screening. The best predictor of decreased anxiety and depression in full screening and triage conditions was receiving a referral to psychosocial services. CONCLUSION: Routine online screening is feasible in a large cancer center and may help to reduce future distress levels, particularly when coupled with uptake of appropriate resources.

Patient ethnicity: a key predictor of cancer care satisfaction.

INTRODUCTION: Research in cancer care satisfaction itself is scarce; investigation of the role of ethnicity in care satisfaction is even rarer. OBJECTIVE: The present study examined relationships between ethnicity and satisfaction with care in a sample of 759 patients diagnosed with three different types of cancer (lung, head and neck, or gynecologic) from a large tertiary cancer hospital. METHOD: Respondents filled out an assessment package that consisted of demographics, the Ware Patient Satisfaction Questionnaire-III (PSQ-III), 17 additional items constructed by the research team to examine other specific areas of satisfaction, and the Psychological Screen for Cancer (PSSCAN) Part C, to measure anxiety and depression. RESULTS: In a multivariate analysis, being non-White emerged as the primary predictor variable (beyond patient age, gender, marital status, education, cancer site, duration of illness, and presence or absence of metastases) of several of the PSQ-III satisfaction subscales. Conclusion. Health care systems must consider how to become more responsive to the needs of all individuals, regardless of their ethnic background and levels of acculturation.

Cancer patients' satisfaction with care in traditional and innovative ambulatory oncology clinics.

This study examined the effects of environmental changes, such as rearranging the seating area, playing soft music, and displaying scenes of nature, on aspects of patient satisfaction, ranging from satisfaction with the physical environment and wait times to continuity of care, confidentiality, and trust in providers. Patients receiving care in a new, innovative cancer center had significantly higher satisfaction scores on the physical environment and wait time subscales than the patients receiving care in an older, traditional center. However, the 2 centers did not differ on any of the other satisfaction subscales. Implications of these findings are discussed.