PURPOSE:The purpose of the present systematic review was to develop a practice guideline to inform health care providers about screening, assessment, and effective management of cancer-related fatigue (crf) in adults.METHODS:The internationally endorsed adapte methodology was used to develop a practice guideline for pan-Canadian use. A systematic search of the literature identified a broad range of evidence: clinical practice guidelines, systematic reviews, and other guidance documents on the screening, assessment, and management of crf. The search included medline, embase, cinahl, the Cochrane Library, and other guideline and data sources to December 2009.RESULTS:Two clinical practice guidelines were identified for adaptation. Seven guidance documents and four systematic reviews also provided supplementary evidence to inform guideline recommendations. Health professionals across Canada provided expert feedback on the adapted recommendations in the practice guideline and algorithm through a participatory external review process.CONCLUSIONS:Practice guidelines can facilitate the adoption of evidence-based assessment and interventions for adult cancer patients experiencing fatigue. Development of an algorithm to guide decision-making in practice may also foster the uptake of a guideline into routine care.

Purpose The impact of cancer and cancer treatment on the long-term health and quality of life of survivors is substantial, leading to questions about the most appropriate configuration of services and models of care for follow-up of post-primary treatment survivors.Methods A systematic review and quality appraisal of the health literature for structure of services and models of follow-up care for post-treatment survivors was identified through a search of guideline sources and empirical databases including MEDLINE, EMBASE, PsycINFO, the Cochrane Library, CINAHL, and EBSCO from 1999 through December 2009.Results Ten practice guidelines and nine randomized controlled trials comprised the evidence base for models of care for adult cancer survivors. Although the evidence base was rated as low quality, nurse-led and primary care physician models of follow-up care were equivalent for detecting recurrence. Consensus also suggests that cancer survivors may benefit from coordinated transition planning that includes the provision of survivorship care plans as part of standard care.Conclusions Realignment of models of care is identified as a health system priority to meet the supportive care and surveillance needs of a burgeoning survivor population. Further research is needed to evaluate the efficacy of models of care in a broader population of cancer survivors with differing needs and risks. While the evidence is limited, there is research that may be used to guide the configuration of health care services and planning.

PURPOSE:Although recommended as an essential part of cancer care, there is limited evidence regarding the optimum approach to psychosocial health care needs assessment in this setting. To address this gap, the Cancer Journey Action Group of the Canadian Partnership Against Cancer (CPAC) and the Canadian Association of Psychosocial Oncology (CAPO) partnered to develop consensus-based recommendations regarding the routine assessment of psychosocial and supportive care needs. The purpose of this paper is to summarize the evidence that informed the guideline and disseminate the recommendations developed by the expert panel.METHODS:Clinical practice recommendations were developed by a panel comprised of psychosocial and interdisciplinary experts. Recommendations were informed by a review of oncology clinical practice guidelines, systematic reviews, and primary research, through to May 2008. Following expert consensus on the recommendations, the clinical practice guideline was externally reviewed by a purposively selected sample of national and international interdisciplinary experts.RESULTS:A total of nine clinical practice guidelines, three systematic reviews, and 14 primary studies were included in the review. Overall, this body of literature suggested that routine collection of psychosocial health care data has an influence on communication with oncologists and other study specific outcomes, but the evidence was limited by heterogeneity and methodological limitations. Based on the interpretation of this body of evidence by clinical experts, research methodologists, and external reviewers, 12 substantive recommendations were developed regarding the process and parameters of psychosocial needs assessment in adult cancer patients.CONCLUSION:Given the limitations in the current body of evidence, there remains a need for rigorous empirical research regarding the optimal approach to psychosocial needs assessment, including the specific characteristics that influence effectiveness on patient outcomes. This guideline fills an important gap in psychosocial care, regarding the routine assessment of psychosocial health care needs.

Ongoing high-quality research is essential to optimize services for cancer survivors. Interventions that promote healthy lifestyle behaviours or that address psychosocial concerns and distress appear to improve physical functioning, psychosocial well-being, and quality of life for survivors.

Objective We proposed to document the effect of arm morbidity and disability in 40 Canadian women who were 12–24 months post breast cancer surgery. Methods We completed 40 qualitative interviews as one component of a multidisciplinary national longitudinal study of arm morbidity after breast cancer (n = 745) involving four research sites (Fredericton/Saint John, Montreal, Winnipeg, Surrey). During semi-structured interviews, participants who had reported arm morbidity and disability in earlier surveys were asked to discuss the effects of these conditions on everyday life. Results The interviewees reported making major adjustments to paid and unpaid work, which often involved the assistance of family members, thus demonstrating the effect of disability. Interview data resulted in the creation of a model that addresses arm morbidity and disability, and that holds implications for health care professionals. Conclusions Based on the interview findings, we conclude that a robust measure of disability after breast cancer should be developed. In the absence of a validated measure of the effect of disability, evaluating qualitative responses to questions about everyday activities could provide the impetus for provision of physical therapy and emotional support.

8521 Background: The extent of patient involvement in the decision making process for cancer treatment can impact satisfaction with care. A pooled-analysis of clinical studies from the US and Canada incorporating the Control Preferences Scale (CPS) was conducted to produce normalized data regarding patient preferences and examine differences in role preference related to country, tumor type, gender and other demographics. Methods: Patient data culled from six trials indicated the treatment decision making role preferred and the role actually experienced clinically. Fisher’s Exact Tests were performed to compare role distribution concordance and association with clinical and demographic variables. Results: Data available for 3,491 patients indicated that 25% preferred an active role, 46% a collaborative role, and 29% a passive role in their medical treatment decision making. In terms of actual experience, 30% of patients reported taking on an active role, 34% collaborative, and 36% passive. Overall, 61% of patients reported playing the role they prefer. Differences between genders in the preferred role were slight, but males achieved their preferred role more often than females (66% vs. 60%, p=0.011). More women actually took a passive role than men (40% vs. 24%, p<0.0001) as did more patients in the US than Canada (84% vs. 54%, p<0.001). Canadian patients preferred more passive than active roles (33% vs 22.4%) and US patients preferred more active to passive roles (31.9% vs 14.2%) (p<0.001). Older patients preferred a more passive role and took on that role. Differences in role preference across tumor types were negligible. Conclusions: Roughly one half of the cancer patients studied indicated that they preferred to have a collaborative relationship with physicians, the remaining patients split equally between an active and passive role. The US cohort seemed to want to be more assertive than their Canadian counterparts and women ended up playing a more passive role than they preferred. Given these gender and cross-county differences these findings highlight the need for individualized patient communication styles to be incorporated into treatment plans No significant financial relationships to disclose.

This study examined concurrent influences on the will to live in 189 patients with end-stage cancer. The authors found significant correlations between the will to live and existential, psychological, social, and, to a lesser degree, physical sources of distress. Existential variables proved to have the most influence, with hopelessness, burden to others, and dignity entering into the final model. Health care providers must learn to appreciate the importance of existential issues and their ability to influence the will to live among patients nearing death.

The area of communication between cancer patients and health care professionals has its empirical publication roots in the 1960s when the importance of patient–oncologist communication, including communication skills training and attention to psychosocial concerns, was asserted (Payne and Krant, 1969). This field of study has received increasing attention over the past two decades as indicated by the burgeoning volume of empirical research literature from the 1980s (Hack et al., 1992) to the 1990s (Cann et al., 2002), and to the present (Cann et al., 2004). This exponential rise in the number of patient–professional communication articles has been fueled by an oncology service climate strained by rising costs and strapped resources, and by a practice model that has evolved from paternalism to one of consumerism rooted in the value of patient autonomy. Patient– professional communication has been complicated by a proliferation of cancer treatments, the expanding body of treatment information available to patients, and greater access to both useful and erroneous information via the Internet. The constrictions of resources and time that are so commonly observed in oncology practice will only increase as the baby boomer population, now entering mid-life, succumbs to the physical ails of advancing age. Despite many advances over the past two decades in our understanding of cancer aetiology and the development of new cancer treatments, cancer patients continue to report having unmet care needs, and the majority of complaints expressed by patients pertain to the quality of communication with oncology service providers. This special issue of Psycho-Oncology is dedicated to communication between cancer patients and health professionals. The goal of this issue is to provide critical reviews of the empirical literature in this area, papers that address the theoretical and conceptual underpinnings of research, and suggestions to advance research efforts. The reader will notice that six of the eight articles in this issue are review papers co-authored by the Sociobehavioural Cancer Research Network (SCRN) Communication Team. With the support of the National Cancer Institute of Canada (NCIC) and the Canadian Cancer Society (CCS) this team is mandated to conduct communication research with a view to moving this research field forward on a global scale. The goal of the team is to stimulate advances in addressing the communication concerns of patients and professionals through original research, reviews of empirical work, and international dialogue. Although various theoretical constructs and their conceptual applications have informed patient–professional communication research, lacking in this area is a concise, comprehensive, and parsimonious framework of patient–professional communication. The first paper in this special series presents this very framework. Feldman-Stewart and colleagues have designed this framework for the purposes of organizing and summarizing the communication literature, guiding the assessment of the communication process, and informing the development of relevant interventions. The utility of this framework is apparent in the many papers of this special issue that include

PURPOSE This study examined a novel intervention, dignity therapy, designed to address psychosocial and existential distress among terminally ill patients. Dignity therapy invites patients to discuss issues that matter most or that they would most want remembered. Sessions are transcribed and edited, with a returned final version that they can bequeath to a friend or family member. The objective of this study was to establish the feasibility of dignity therapy and determine its impact on various measures of psychosocial and existential distress. PATIENTS AND METHODS Terminally ill inpatients and those receiving home-based palliative care services in Winnipeg, Canada, and Perth, Australia, were asked to complete pre- and post-intervention measures of sense of dignity, depression, suffering, and hopelessness; sense of purpose, sense of meaning, desire for death, will to live, and suicidality; and a post-intervention satisfaction survey. RESULTS Ninety-one percent of participants reported being satisfied with dignity therapy; 76% reported a heightened sense of dignity; 68% reported an increased sense of purpose; 67% reported a heightened sense of meaning; 47% reported an increased will to live; and 81% reported that it had been or would be of help to their family. Post-intervention measures of suffering showed significant improvement (P = .023) and reduced depressive symptoms (P = .05). Finding dignity therapy helpful to their family correlated with life feeling more meaningful (r = 0.480; P = .000) and having a sense of purpose (r = 0.562; P = .000), accompanied by a lessened sense of suffering (r = 0.327; P = .001) and increased will to live (r = 0.387; P = .000). CONCLUSION Dignity therapy shows promise as a novel therapeutic intervention for suffering and distress at the end of life.

This study sought to examine the relationships between decisional role (preferred and assumed) at time of surgical treatment (baseline), congruence between assumed role at baseline and preferred role 3 years later (follow‐up), and quality of life at follow‐up. Two hundred and five women diagnosed with breast cancer completed the decisional role preference scale at baseline and follow‐up, and the EORTC QLQ‐C30 at follow‐up. A statistically significant number of women had decisional role regret, with most of these women preferring greater involvement in treatment planning than was afforded them. Women who indicated at baseline that they were actively involved in choosing their surgical treatment had significantly higher overall quality of life at follow‐up than women who indicated passive involvement. These actively involved women had significantly higher physical and social functioning and significantly less fatigue than women who assumed a passive role. Quality of life was significantly related to reports of experienced involvement in treatment decision making, but not to reports of preferred involvement, or congruence between preferred and experienced involvement. Copyright © 2005 John Wiley & Sons, Ltd.

The construct of ‘dignity’ is frequently raised in discussions about quality end of life care for terminal cancer patients, and is invoked by parties on both sides of the euthanasia debate. Lacking in this general debate has been an empirical explication of ‘dignity’ from the viewpoint of cancer patients themselves. The purpose of the present study was to use factor‐analytic and regression methods to analyze dignity data gathered from 213 cancer patients having less than 6 months to live. Patients rated their sense of dignity, and completed measures of symptom distress and psychological well‐being. The results showed that although the majority of patients had an intact sense of dignity, there were 99 (46%) patients who reported at least some, or occasional loss of dignity, and 16 (7.5%) patients who indicated that loss of dignity was a significant problem. The exploratory factor analysis yielded six primary factors: (1) Pain; (2) Intimate Dependency; (3) Hopelessness/Depression; (4) Informal Support Network; (5) Formal Support Network; and (6) Quality of Life. Subsequent regression analyses of modifiable factors produced a final two‐factor (Hopelessness/Depression and Intimate Dependency) model of statistical significance. These results provide empirical support for the dignity model, and suggest that the provision of end of life care should include methods for treating depression, fostering hope, and facilitating functional independence. Copyright © 2004 John Wiley & Sons, Ltd.

The basic tenets of palliative care are frequently subsumed under the goal of helping patients to die with dignity. Our research group has studied the issue of dignity, with dying patients serving as the primary informants. This paper reviews some of our findings, including an overview of the Dignity Model that derives from our empirical work. Furthermore, this paper summarizes various psychotherapeutic approaches which have been considered for this vulnerable patient population. Finally, we provide the rationale based on the Dignity Model for a psychotherapeutic intervention we have coined Dignity Therapy. This brief, individualized therapeutic approach has been informed by our dignity work, and specifically designed for application in patients nearing death.

BACKGROUND Up to 70% of women who quit smoking while pregnant will relapse during the first postnatal year. In this study, a community-based, ecological approach guided the development and implementation of a smoking cessation intervention for perinatal women. AIMS The aims of this pilot project were to: (1) develop and implement a community-based intervention to assist women to stop smoking or prevent smoking relapse during the pre- and postnatal periods, (2) provide feedback on participants' perceptions of the helpfulness of the intervention, (3) compare perceptions of the helpfulness of the intervention between women who received the intervention during the prenatal vs. postnatal periods, and (4) identify additional components of the intervention which need to be included in future research. DESIGN/METHODS Using a participative process and a detailed review of the literature, researchers, health care professionals and women (pregnant or postnatal) developed a multifaceted intervention. The intervention included four core components, which all women received: home visit by the intervention nurse, follow-up telephone call(s), resource package, and letter of congratulations. Additional optional components included: telephone help line, support groups, referrals and other services. Forty-two women who were pregnant or had recently delivered participated. Descriptive and evaluation data were collected from participants using questionnaires and telephone interviews. The research was approved by the university Research Ethics Board. FINDINGS Participants found the core components of the intervention to be helpful in their smoking cessation goals, particularly the home visit and resource material. The support groups and smoking help line were not used. There were no differences in how helpful the components of the intervention were perceived to be between women who received it in the prenatal or postnatal periods. CONCLUSIONS Future research is needed to evaluate the effectiveness of the intervention.

Inconsistent reports of the prevalence of risk perception accuracy may be related to the use of different classification strategies. The purpose of this study was to compare two approaches for assessing the accuracy of women's breast cancer risk perceptions. A telephone survey was conducted with an age-stratified random sample of British Columbian women 20-79 years of age without a breast cancer diagnosis (n = 761). A comparison of two methods employed to determine perception accuracy revealed substantial differences between the methods with regard to the classification of women as under- and over-estimators. The study highlights the need for researchers to consider the method used to determine the accuracy of risk perceptions and the implications of using different strategies to assess risk perception accuracy when such information is used in research or to guide interventions.