2013 President's Plenary International Psycho-oncology Society: embracing the IPOS standards as a means of enhancing comprehensive cancer care.

BACKGROUND: The second President's Plenary at the 2013 International Psycho-oncology Society's World Congress in Rotterdam, the Netherlands aimed to progress and, where needed, initiate changes to achieve comprehensive cancer care. Recent initiatives have been driven by the need to see psychosocial care as an integrated part of holistic multidisciplinary quality cancer care. The President's Plenary session covered the need for the following: An internationally agreed standard of quality cancer care, which includes psychosocial care for patients and their families and caregivers. An endorsement to assess distress as the 6th vital sign. Psycho-oncology professionals to integrate into a federation promoting better national and international outcomes. CONCLUSION: This overview highlights progress in terms of enhanced communication between and within different professionals groups supporting the implementation of a model of comprehensive patient care that is inclusive of psychosocial support and screening for distress. Tasks and challenges for the future are set out but the primary message is of the importance of collaboration in order to achieve recognition that psychosocial care is integrated into comprehensive cancer care; in this way, patient, family and carer needs can be more appropriately met.

Online screening for distress, the 6th vital sign, in newly diagnosed oncology outpatients: randomised controlled trial of computerised vs personalised triage.

BACKGROUND: This randomised controlled trial examined the impact of screening for distress followed by two different triage methods on clinically relevant outcomes over a 12-month period. METHODS: Newly diagnosed patients attending a large tertiary cancer centre were randomised to one of the two conditions: (1) screening with computerised triage or (2) screening with personalised triage, both following standardised clinical triage algorithms. Patients completed the Distress Thermometer, Pain and Fatigue Thermometers, the Psychological Screen for Cancer (PSSCAN) Part C and questions on resource utilisation at baseline, 3, 6 and 12 months. RESULTS: In all, 3133 patients provided baseline data (67% of new patients); with 1709 (54.5%) retained at 12 months (15.4% deceased). Mixed effects models revealed that both groups experienced significant decreases in distress, anxiety, depression, pain and fatigue over time. People receiving personalised triage and people reporting higher symptom burden were more likely to access services, which was subsequently related to greater decreases in distress, anxiety and depression. Women may benefit more from personalised triage, whereas men may benefit more from a computerised triage model. CONCLUSION: Screening for distress is a viable intervention that has the potential to decrease symptom burden up to 12 months post diagnosis. The best model of screening may be to incorporate personalised triage for patients indicating high levels of depression and anxiety while providing computerised triage for others.

Characterizing distress, the 6th vital sign, in an oncology pain clinic.

CONTEXT: The delineation of populations of cancer patients with complex symptoms can inform the planning and delivery of supportive care services. OBJECTIVES: We explored the physical, psychosocial, and practical concerns experienced by patients attending an ambulatory oncology symptom control clinic. METHODS: Patients attending a Pain Clinic at a large tertiary cancer centre were invited to complete screening measures assessing distress, pain, fatigue, anxiety, depression, and practical and psychosocial problems. A matched sample of patients who did not attend the Pain Clinic were selected as a comparison group. RESULTS: Of all eligible Pain Clinic patients, 46 (77%) completed the measures; so did 46 comparison group patients. The percentages of patients reporting distress (78.3%), pain (93.5%), and fatigue (93.5%) were higher among Pain Clinic patients than among the comparison patients. A higher percentage of Pain Clinic patients also reported multiple, severe, concurrent symptoms: 87% scored 7 or higher in at least one of the pain, fatigue, or distress scales, and 30.4% of the patients scored 7 or higher on all three. The most common problem areas were feeling a burden to others, trouble talking with friends and family, spirituality, and sleep difficulties. CONCLUSIONS: Higher levels of multiple, concurrent symptoms and psychosocial problems were found in Pain Clinic patients than in a group of patients who did not attend the Pain Clinic. Routine screening and triaging of cancer patients using a comprehensive and standardized panel of questions can facilitate symptom assessment and management, and can inform program planning.

High levels of untreated distress and fatigue in cancer patients.

The purpose of the study was to assess a large representative sample of cancer patients on distress levels, common psychosocial problems, and awareness and use of psychosocial support services. A total of 3095 patients were assessed over a 4-week period with the Brief Symptom Inventory-18 (BSI-18), a common problems checklist, and on awareness and use of psychosocial resources. Full data was available on 2776 patients. On average, patients were 60 years old, Caucasian (78.3%), and middle class. Approximately, half were attending for follow-up care. Types of cancer varied, with the largest groups being breast (23.5%), prostate (16.9%), colorectal (7.5%), and lung (5.8%) cancer patients. Overall, 37.8% of all patients met criteria for general distress in the clinical range. A higher proportion of men met case criteria for somatisation, and more women for depression. There were no gender differences in anxiety or overall distress severity. Minority patients were more likely to be distressed, as were those with lower income, cancers other than prostate, and those currently on active treatment. Lung, pancreatic, head and neck, Hodgkin's disease, and brain cancer patients were the most distressed. Almost half of all patients who met distress criteria had not sought professional psychosocial support nor did they intend to in the future. In conclusion, distress is very common in cancer patients across diagnoses and across the disease trajectory. Many patients who report high levels of distress are not taking advantage of available supportive resources. Barriers to such use, and factors predicting distress and use of psychosocial care, require further exploration.

Partner understanding of the breast and prostate cancer experience.

PURPOSE: This exploratory study was designed to examine partners' understanding of patients' experience with prostate or breast cancer and to assess the congruence between patient and partner perceptions regarding social support and the cancer experience. METHODS: Partner understanding of patient mood was assessed by comparing the Profile of Mood States (POMS) questionnaire scores of patients with the POMS scores of their partners (who were instructed to complete the questionnaire as patient proxies). A semistructured interview with corresponding questions for patients and partners assessed the congruency between patient and partner perceptions regarding social support and the cancer experience. RESULTS AND CONCLUSIONS: Twenty-three couples participated. Eight couples were woman with breast cancer and their husbands, and 15 couples were men with prostate cancer and their wives. The patients with breast cancer and their partners were an average age of 48 years and had been married for 20 years, while the patients with prostate cancer and their partners were 67 years of age and had been married for 40 years, on average. Overall, female partners possessed a more accurate understanding of their husbands' experience with prostate cancer than male partners had of women's breast cancer experience. These men tended to overestimate the breast cancer patients' self-reported levels of distress. Patient and partner perceptions regarding social support in the relationship and the cancer experience were also more congruent in prostate couples than in breast couples. This may be a factor not only of gender but also of age and the length of time that these couples had been together, which was twice as long for the prostate couples. Overall, however, patients were well adjusted and felt understood by their partners and satisfied with the support their partners provided.

Empirically supported treatments: will this movement in the field of psychology impact the practice of psychosocial oncology?

This article discusses the likelihood of the empirically supported treatment (EST) movement impacting the practice of psychosocial oncology, with the goal of raising awareness of these issues and encouraging debate within the psychosocial oncology research and practice community. In 1993, the American Psychological Association struck a task force to develop criteria for empirically evaluating psychological interventions. The Clinical Psychology (Division 12) Task Force now evaluates psychological interventions and publishes an updated list of ESTs on a yearly basis. Concerns raised about the EST movement in psychology have included difficulties with the terminology and process of the Task Force, problems with the methodology used in psychotherapy research, and with the possible practical implications of the Task Force list of EST. A review of the literature suggests that psychosocial interventions in oncology are currently beginning to be evaluated by the EST criteria and that the reviewed interventions have yet to attain EST status. Following from this review, it is argued that researchers and practitioners in psychosocial oncology should become aware of the standards established by the Division 12 Task Force and that future psycho-oncology intervention research may need to be designed to meet those standards. The discipline of psychosocial oncology is encouraged to consider the possible implications of accepting or not accepting the EST criteria.

Eight-year follow-up of a community-based large group behavioral smoking cessation intervention.

OBJECTIVE: To evaluate the effectiveness of a large group community-based behavioral smoking cessation intervention over an 8-year follow-up period and to determine precessation predictors of cessation at each follow-up time. RESEARCH APPROACH: Behavioral intervention followed by three longitudinal follow-up interviews. SETTING: Regional Outpatient Cancer Centre. STUDY PARTICIPANTS: 971 participants in smoking cessation clinics held between 1986 and 1990. INTERVENTION: Eight 90-minute sessions over 4 months utilizing education, self-monitoring, nicotine fading, a group quit date and behavioral modification techniques. Up to 110 smokers participated in each group program. MAIN OUTCOME MEASURES: Cessation rates at 3, 6, and 12 months postquit and at 8-year follow-up. Differences between successful and unsuccessful participants in precessation demographic, smoking history, and smoking behavior variables. RESULTS: At 3 months postquit date, 39.3% of the 971 participants reported that they were not smoking, decreasing to 32.1% at 6 months and 26.0% at 12 months. At the 8-year follow-up, 33.9% of the original sample were contacted, and of those, 47.7% reported that they were currently not smoking. There were nine predictors of cessation at the end of the program (3 months), which were similar to those previously reported in the literature. Similarly, at 6 and 12 months, six factors were associated with not smoking. At the 9-year follow-up the only variable predictive of continued abstinence was being female (p < .05). CONCLUSIONS: This program was successful in promoting smoking cessation and maintenance, even with its large-group format. Predictive factors were similar to those previously reported in the literature.

A randomized controlled trial of a brief psychoeducational support group for partners of early stage breast cancer patients.

Partners of breast cancer patients are relied upon for support at a time when their own coping abilities are taxed by the challenge of cancer, yet few studies have investigated psychosocial interventions that include or target the patient's 'significant other'. Of the 118 consecutive patients approached, 36 patients and their partners participated in a randomized controlled trial of a brief psychoeducational group program for partners only. Psychometric instruments (including the Profile of Mood States (POMS), the Index of Marital Satisfaction (IMS) and DUKE-UNC Functional Social Support Scale (FSSS)) were administered pre-test, post-test and at 3 months follow-up. The Mental Adjustment to Cancer Scale (MAC) was also completed by patients. Three months after the intervention, partners had less mood disturbance than did controls. Patients whose partners received the intervention reported less mood disturbance, greater confidant support (CS) and greater marital satisfaction.

Impact of computerized quality of life screening on physician behaviour and patient satisfaction in lung cancer outpatients.

The purpose of this paper was to determine if providing patient specific Quality of Life (QL) information to clinic staff before a clinic appointment improved patient care in a lung cancer outpatient clinic. Patients were sequentially assigned to either a usual care control group or the experimental group, which completed a computerized version of the European Organization for Research and Treatment of Cancer (EORTC) QLQ-C30 questionnaire in order to provide the clinic staff with QL information prior to the clinic appointment. The control group completed the EORTC QLQ-C30 paper version after the clinic appointment. Outcome measures were patient satisfaction, the degree to which issues identified on the QL questionnaire were addressed in the appointment, and a chart audit, which measured charting of QL issues and actions taken by the clincian relating to QL. In the experimental group, more QL issues identified by the patient on the EORTC QLQ-C30 were addressed during the clinic appointment than in the control group. As well, marginally more categories were charted and a trend towards more actions being taken was seen in the experimental group. Patients reported being equally and highly satisfied with the treatment in both groups. The clinical implication is that the computerized administration of the EORTC QLQ-C30 questionnaire and providing staff with a report highlighting patient-specific QL deficits is a simple, time-effective and acceptable means of improving patient-provider communication in a busy outpatient clinic. Large trials studying its effectiveness in different patient populations and regions would further elucidate the nature of this effect and potentially improve the overall quality of care that patients receive.

Acute effects on neuropsychological function and quality of life by high-dose multiple daily fractionated radiotherapy for malignant astrocytomas: assessing the tolerability of a new radiotherapy regimen.

Cognitive and other quality of life measures were assessed in 29 patients with supratentorial malignant astrocytomas before and after high-dose (8000 cGy) multiple daily fractionated radiotherapy. Assessments were done immediately before and after radiotherapy. Patients completed a neuropsychological evaluation and the Functional Living Index: Cancer (FLIC). Spouses completed the Family Environment Scale and the Profile of Mood States. Cognitive abilities generally improved over the course of radiotherapy. Occasionally, deterioration of potential clinical importance was observed on functions associated with the tumour site. Quality of life as assessed by the FLIC was stable in most cases and improved in five, but deteriorated in three patients. Families showed slightly less Conflict and slightly more Cohesion than the norm; this was especially so when patients had greater cognitive deficit. Emotional state of spouses was variable, with increased fatigue or reduced activity most commonly reported, followed by depression and anxiety. Mostly this improved with time or remained stable, but two spouses reported worsening emotional state. Results are generally encouraging for tolerance of this radiotherapy protocol, although they demonstrate that limited adverse effects may occur in some cases.

Computerized quality-of-life screening in an oncology clinic.

PURPOSE: The purpose of these studies was to assess the feasibility and reliability of computerized quality-of-life screening for patients attending an outpatient breast cancer clinic. The screening program involved a computerized administration of the European Organization for Research and Treatment of cancer QUality of Life Questionnaire (EORTC QLQ-C30). The computer software generated a screening report that clinic staff members used in the clinical encounter to assist in identifying quality-of-life problems. DESCRIPTION OF STUDY: Two studies are reported. In study I, 36 patients and either their nurses or physicians evaluated the feasibility of the screening program using questionnaires developed for this study. In study II, a separate sample of 50 patients completed both the computerized and paper-and-pencil versions of the QLQ-C30 to assess reliability and consistency of responding. RESULTS: The results of study I indicate that the patients found the computerized administration to be an acceptable means of providing staff members with information on day-to-day functioning. Clinic nurses and physicians indicated that the report was useful in identifying problematic quality-of-life domains. The results of study II indicate that the computerized administration is highly correlated with the paper-and-pencil version and has similar internal consistency. Discrepancies in responses were identified, but were at an acceptable level. CLINICAL IMPLICATIONS: The results of these studies indicate that computerized quality-of-life screening is feasible and may provide reliable data for research and quality assurance studies. Staff evaluations suggest that the written report may provide clinic staff members with a tool for identifying quality-of-life concerns in which individual patients are experiencing difficulty. Potential benefit to patients include productive use of waiting room time, greater efficiency in the assessment process, and an improved likelihood that nurses and physicians will recognize and attend to quality-of-life deficits. The valid, reliable, and efficient identification of important patient quality-of-life concerns allows multidisciplinary team members to focus meaningfully their clinical efforts within their respective areas of responsibility.

Well-being at the end of life: Part 1. A research agenda for psychosocial and spiritual aspects of care from the patient's perspective.

This article reviews the scientific literature concerning psychosocial and spiritual aspects of palliative care for the patient with cancer. It discusses 4 separate areas: the continuum of care, communication, spiritual and psychological issues, and psychotherapeutic and behavioural management of physical symptoms. Most of the research could be classified as fundamental according to the Cancer Control Framework of the National Cancer Institute of Canada. In some areas, even fundamental research was lacking. There is a need for clearer and more relevant definitions of the desired outcomes of interventions and also for the development of appropriate quantitative and qualitative methods. We must determine which interventions can be initiated earlier in the disease trajectory and can provide benefit at the palliative phase. Given the burden of suffering that palliative care aims to address, relatively little research in this area has been conducted.

Disease-specific quality of life: the Gallstone Impact Checklist.

OBJECTIVE: To develop a disease-specific quality-of-life scale for symptomatic cholelithiasis for use in clinical trials, and to evaluate its reliability, construct validity and responsiveness. DESIGN: Questionnaire. PARTICIPANTS: Health care professionals, patients with symptomatic cholelithiasis and their significant others. INTERVENTIONS: A 114-item questionnaire was developed from open-ended questions completed by the participants. Questions dealt with physical symptoms, activities of daily living, job performance, leisure activities, emotional factors, marital and sexual relations, support networks and financial situation. The questionnaire was administered by an interviewer to 50 subjects booked for elective cholecystectomy: frequency-importance products were calculated for each of the 114 items. A final shortened scale (the Gallstone Impact Checklist [GIC]) contained 41 items and was completed by patients with symptomatic cholelithiasis on two occasions, 4 to 6 weeks apart. RESULTS: The checklist requires 10 to 15 minutes to complete. Reliability of the questionnaire and its four subscales was assessed by Cronbach's alpha (overall questionnaire 0.88, pain 0.60, dyspepsia 0.73, emotional impact 0.78 and food and eating 0.84). Construct validity was established by comparison of questionnaire subscales with global ratings of physical and emotional health. Among subjects who reported a difference in their symptoms attributed to gallstones, there was a significant change in total GIC score and in each of the four subscales. Among patients who had undergone cholecystectomy, the absolute value of the effect size was 1.63. CONCLUSIONS: The GIC has content validity and appears to be a reliable, responsive measure of within-person change for subjects with symptomatic cholelithiasis.

A comparison of pain experienced during hysterosalpingography and in-office falloposcopy.

OBJECTIVE: To determine patient perception of the intensity of pain during in-office falloposcopy compared with hysterosalpingography (HSG). DESIGN: A prospective quality assurance study using a formal pain scale to compare two procedures. SETTING AND PATIENTS: Patients attending a tertiary level infertility clinic. INTERVENTIONS: In-office falloposcopy or HSG using analgesics. MAIN OUTCOME MEASURES: The mean pain score and area under the pain curve experienced during each investigation. RESULTS: Using our technique, in-office falloposcopy was associated with a significantly lower mean intensity of pain and with a longer procedure. The duration of the falloposcopic examination declined significantly with physician experience. Flushing adjacent to the uterotubal ostium, ostial cannulation, and rapid eversion provoked episodes of acute pain during falloposcopy. CONCLUSION: These results support the patient acceptability of in-office falloposcopy.

Compliance with follow-up of patients treated for non-seminomatous testicular cancer.

Many patients with Stage 1 non-seminomas are now treated by orchidectomy and close follow-up along. Chart review indicated that a group of such patients, compared with patients treated with chemotherapy, tended to be less compliant with follow-up. A questionnaire given to a second sample of patients confirmed that surgical patients underestimated the dangers of the disease and chances of relapse, and doubted the value of follow-up.