Rheumatic diseases significantly affects quality of life, making self-management critical. The Illness Intrusiveness Rating Scale (IIRS) measures the extent to which illness interferes with various life domains, but until now it has not been translated into Danish. This study aimed to translate the IIRS into Danish and assess its psychometric properties in Danish patients with a rheumatic disease. Following COSMIN guidelines, the IIRS was translated and culturally adapted through a multi-step process, including forward and backward translations and cognitive interviews. Psychometric testing included assessments of internal construct validity by confirmatory factor analysis, internal consistency by Cronbach’s α, reliability by test–retest, standard error of measurement, and responsiveness by minimal detectable change. The final Danish version was well-understood, though minor issues arose, such as the relevance of “religious expression.” The scale demonstrated high internal consistency (Cronbach’s α = 0.92). Confirmatory factor analysis confirmed the original three-factor structure with an acceptable model fit (comparative fit index = 0.94, the Root Mean Square Error of Approximation = 0.10). Strong correlations were found within “Relationships and Personal Development” and “Instrumental” domains, but the “Diet” item did not meet factor assignment criteria. Test–retest reliability was acceptable (intraclass correlation coefficients ≥ 0.70 for most items). The Danish IIRS showed strong psychometric properties, making it a reliable and valid tool for assessing illness impact and self-management interventions in Danish patients with rheumatic disease.

BACKGROUND:Previous trials testing prevention strategies for chronic graft versus host disease (GVHD) have measured its cumulative incidence. In this trial of anti-thymocyte globulin, we measured treatment-independence at a long-term timepoint as the primary endpoint. METHODS:This was a randomised, open-label, multicentre, phase 3 trial done at ten centres in Canada and one in Australia. Eligible patients had a haematological malignancy (leukaemia, myelodysplastic syndrome, or lymphoma), were between 16 and 70 years of age, eligible for transplantation with a Karnofsky score of at least 60, and received an unrelated donor (fully matched or one-locus mismatched at HLA-A, HLA-B, HLA-C, or DRB1 loci) graft following myeloablative or non-myeloablative-reduced intensity conditioning. Patients were randomly assigned to receive anti-thymocyte globulin 4·5 mg/kg plus standard GVHD prophylaxis (cyclosporine or tacrolimus plus methotrexate or mycophenolate) or standard GVHD prophylaxis alone. The primary endpoint, freedom from immunosuppressive therapy without resumption at 12 months, was previously reported. Here we report on the prespecified 24-month analysis. Analyses were per-protocol, excluding those patients who did not proceed to transplantation. This trial is registered as ISRCTN 29899028 and NCT01217723, status completed. FINDINGS:Between June 9, 2010, and July 8, 2013, we recruited and randomly assigned 203 eligible patients to receive anti-thymocyte globulin (n=101) or no additional treatment (n=102) along with standard GVHD prophylaxis. 7 (3%) patients did not receive a transplant and were excluded from the analysis. 38 (38%) of 99 evaluable patients in the anti-thymocyte globulin plus GVHD prophylaxis group were free from immunosuppressive therapy at 24 months compared with 18 (19%) of 97 patients in the standard GVHD prophylaxis group (adjusted odds ratio [OR] 3·49 [95% CI 1·60–7·60]; p=0·0016). At 24 months, the cumulative incidence of relapse was 16·3% (95% CI 8·9–23·7) in the anti-thymocyte globulin plus GVHD prophylaxis group compared with 17·5 (9·9–25·1) in the standard GVHD prophylaxis group (p=0·73) and non-relapse mortality was 21·2% (95% CI 13·2–29·2) versus 31·3% (21·9–40·7; p=0·15). The cumulative incidence of chronic GVHD at 24 months was 26·3% (95% CI 17·5–35·1) in the anti-thymocyte globulin group and 41·3% (31·3–51·3) in the standard GVHD prophylaxis group (p=0·032). Overall survival at 24 months was 70·6% (95% CI 60·6–78·6) in the anti-thymocyte globulin plus GVHD prophylaxis group compared with 53·3% (42·8–62·8) in the standard GVHD prophylaxis group (adjusted hazard ratio [HR] 0·56, 95% CI [0·35–0·90]; p=0·017). Symptoms of chronic GVHD by the Lee Scale were more prevalent in the standard GVHD prophylaxis group, with scores of 13·27 (SD 10·94) in the anti-thymocyte globulin plus GVHD prophylaxis group and 20·38 (SD 14·68) in the standard GVHD prophylaxis group (p=0·040). Depressive symptoms were more prominent in the standard GVHD prophylaxis group, the mean Center for Epidemiological Studies Depression scale (CES-D) scores were 10·40 (SD 9·88) in the anti-thymocyte globulin group and 14·62 (SD 12·26) in the standard GVHD prophylaxis group (p=0·034). Serious adverse events (CTCAE grade 4 or 5) occurred in 38 (38%) patients in the anti-thymocyte globulin group and in 49 (51%) in the standard GVHD prophylaxis group, the most common being infection and GVHD. One patient in the anti-thymocyte globulin plus GVHD prophylaxis group died of Epstein-Barr virus hepatitis, but no deaths were attributable to anti-thymocyte globulin. INTERPRETATION:The results of this prespecified 24-month analysis suggest that pretreatment with anti-thymocyte globulin provides clinically meaningful benefits when added to standard GVHD prophylaxis in patients undergoing unrelated donor transplantation, including decreases in use of immunosuppressive therapy, chronic GVHD and its symptoms, depressive symptoms, and improved overall survival. Anti-thymocyte globulin should be included in the preparative regimens of patients with haematological malignancies selected for unrelated donor transplantation. FUNDING:Canadian Institutes of Health Research and Sanofi.

Background: We assessed whether the presence and severity of common cancer symptoms are associated with the health utility score (HUS) generated from the EQ-5D (EuroQol Research Foundation, Rotterdam, Netherlands) in patients with cancer and evaluated whether it is possible pragmatically to integrate routine hus and symptom evaluation in our cancer population. Methods: Adult outpatients at Princess Margaret Cancer Centre with any cancer were surveyed cross-sectionally using the Edmonton Symptom Assessment System (ESAS) and the EQ-5D-3L, and results were compared using Spearman correlation coefficients and regression analyses. Results: Of 764 patients analyzed, 27% had incurable disease. We observed mild-to-moderate correlations between each ESAS symptom score and the HUS (Spearman coefficients: −0.204 to −0.416; p < 0.0001 for each comparison), with the strongest associations being those for pain (R = −0.416), tiredness (R = −0.387), and depression (R =−0.354). Multivariable analyses identified pain and depression as highly associated (both p < 0.0001) and tiredness as associated (p = 0.03) with the HUS. The ability of the ESAS to predict the HUS was low, at 0.25. However, by mapping ESAS pain, anxiety, and depression scores to the corresponding EQ-5D questions, we could derive the HUS using partial ESAS data, with Spearman correlations of 0.83–0.91 in comparisons with direct EQ-5D measurement of the HUS. Conclusions: The HUS derived from the EQ-5D-3L is associated with all major cancer symptoms as captured by the ESAS. The ESAS scores alone could not predict EQ-5D scores with high accuracy. However, ESAS-derived questions assessing the same domains as the EQ-5D-3L questions could be mapped to their corresponding EQ-5D questions to generate the HUS, with high correlation to the directly measured HUS. That finding suggests a potential approach to integrating routine symptom and HUS evaluations after confirmatory studies.

Background: We previously reported that pretreatment with rabbit anti-thymocyte globulin (ATG) decreases the use of immunosuppressive therapy (IST) and occurrence of chronic graft-versus-host disease (GVHD) 12 months after allogeneic stem cell transplantation from unrelated donors. We hypothesized these benefits would persist beyond 12 months with a positive clinical impact on patients. Methods: Phase 3, multicentre, open-label, randomized controlled trial at 10 centres in Canada and one in Australia. Patients aged 16-70 years with a hematological malignancy, a matched (HLA-A, B, C and DRB1) or 1-antigen/allele mismatched unrelated donor were eligible. Myeloablative, nonmyeloablative or reduced intensity conditioning regimens were permitted according to center clinical preference. Patients were randomized to receive or not to receive rabbit ATG (Thymoglobulin®, Sanofi Canada) as part of their conditioning. GVHD prophylaxis included either cyclosporine or tacrolimus plus methotrexate or mycophenolate mofetil. The ATG arm received 0.5, 2.0, 2.0 mg/kg of ATG on days -2, -1 and +1, respectively. Analyses were on a modified intention-to-treat basis for patients actually transplanted. Primary endpoint was freedom from all systemic IST without resumption up to 24 months after transplantation. Secondary endpoints included survival, relapse, non-relapse mortality, incidence and symptoms of chronic GVHD according to Lee scale and quality of life using different questionnaires including the Center for Epidemiologic Studies Depression (CES-D) scale. We also aimed to evaluate the recently described endpoints of graft-versus-host disease and relapse-free survival (GRFS) and chronic graft-versus-host disease and relapse-free survival (CRFS) in each cohort. This trial was registered at ISRCTN (#29899028) and clinicaltrials.gov (#NCT01217723). Results: Between 06/2010 and 07/2013, 203 patients were randomized and 196 available for end-points analysis, including 99 patients in the ATG group and 97 in the No ATG (control) group. Datalock was performed on April 1, 2019. The cumulative incidence of chronic GVHD at 24 months was significantly lower in ATG recipients (26.3% versus 41.2%, p=0.032). Similarly, more than twice patients in the ATG group were free from IST at 24 months (adjusted OR of 3.49 [95% CI : 1.60-7.60]; p = 0.002). Most patients retained the same IST status from 12 to 24 months (74.7% in the ATG and 81.4% in the control group). Symptoms of chronic GVHD were also significantly less prevalent in patients receiving ATG, with scores by Lee scale of 13.57 (SE : 1.47) versus 19.90 (SE : 2.15); p=0.017. In contrast, we observed no difference in non-relapse mortality (ATG : 21.2% versus No ATG : 30.9%; p=0.14) and relapse (ATG : 16.2% versus No ATG : 17.5%; p=0.73). Of note, there was no increase in relapse in those receiving either myeloablative or non-myeloablative conditioning (Gray's test p = 0.66 and 0.29, respectively). ATG had a positive impact on survival (Figure 1), with an overall survival at 12 months of 74.8% (SE : 4.4) compared with 64.9% (SE : 4.8) in the control group (adjusted HR 0.56 [95% CI : 0.35-0.90; p=0.017). This benefit of ATG on survival persisted at 24 months, with 70.7% of patients in the ATG group and 53.6% in the control group being alive (p=0.018). GRFS at 12 and 24 months were significantly better in the ATG group, with 45.4% and 37.4% of patients alive and free of ever having had GVHD versus 24.7% and 17.5%, respectively (p = 0.0034). CRFS led to similarly better results in ATG recipients at 12 (57.6%) and 24 (48.5%) months (p=0.01; Figure 2). Depressive symptoms were less frequently reported in the ATG group, the mean CES-D scores being 10.39 (SE : 1.29) compared with 14.63 (SE : 1.48) in the No ATG group (p=0.034). There were no statistically significant differences in other patient-reported outcomes. Conclusions: Pretreatment with rabbit ATG in combination with standard acute GVHD prophylaxis provides long term benefits consisting of decreases in chronic GVHD incidence, use of IST, depression and improved survival. Our trial is the first to demonstrate both a survival advantage and improvement in quality of life in patients receiving ATG for chronic GVHD prophylaxis. Our data support that ATG should be included in the preparative regimens of all unrelated donor transplant recipients receiving standard acute GVHD prophylaxis. Disclosures Roy: Celgene: Consultancy, Honoraria, Research Funding; ExCellThera: Patents & Royalties: Royalties from sales of UM171, Research Funding; Amgen Canada: Honoraria; Janssen Canada: Honoraria; Sanofi Canada: Research Funding. Foley:Celgene: Speakers Bureau; Janssen: Speakers Bureau; Amgen: Speakers Bureau. Kuruvilla:Janssen: Research Funding; Roche: Research Funding; BMS: Consultancy; Abbvie: Consultancy; Gilead: Consultancy; Karyopharm: Consultancy; Merck: Consultancy; Roche: Consultancy; Seattle Genetics: Consultancy; Amgen: Honoraria; Astra Zeneca: Honoraria; BMS: Honoraria; Celgene: Honoraria; Gilead: Honoraria; Janssen: Honoraria; Karyopharm: Honoraria; Merck: Honoraria; Novartis: Honoraria; Roche: Honoraria; Seattle Genetics: Honoraria. Lee:AstraZeneca: Research Funding; Incyte: Research Funding; Syndax: Research Funding; Amgen: Research Funding; Novartis: Research Funding; Takeda: Research Funding; Kadmon: Consultancy, Research Funding; Pfizer: Consultancy, Research Funding. Popradi:Sanofi Canada: Consultancy, Honoraria. Walker:Kiadis Pharma: Other: Grant funding via institution (as a principal investigator). OffLabel Disclosure: Rabbit ATG (Sanofi) for chronic GVHD prophylaxis.

Cancers of the head and neck and the treatments required to control them frequently result in serious and persistent impairments that can affect participation and quality of life. Increased recognition of the needs of cancer survivors and their caregivers has prompted research focused on the unique concerns of this complex group. Unmet needs have been identified among 60-70% of patients and a similar proportion of their partners; impacts can include profound social effects, isolation, and psychiatric conditions. Interprofessional teams, supplementing oncology nursing and physicians with physical rehabilitation, occupational therapy, speech-language pathology, nutrition and psychological disciplines is important to address the spectrum of emotional, cognitive, physical and functional, and pragmatic issues. In addition to investigating modified anti-cancer therapy intended to reduce the frequency of long-term toxicities, supportive care strategies that may be effective include physical activity, nutritional intervention, behavioral and cognitive-behavioral therapy, psycho-education and goal management therapy. This article addresses identified needs across varied domains, the current state of research surrounding them, and their impact on quality of life, while also describing one cancer center's approach to head and neck cancer survivorship. (C) 2017 Elsevier Inc. All rights reserved.

Background: Health utility scores (HUS), a form of health-related quality of life (HRQoL) assessments useful in economic analyses, such as the EuroQol (EQ-5D) were originally standardized to health state preferences in healthy individuals. To demonstrate clinical appropriateness in cancer patients, we assessed the association of common cancer symptoms with EQ-5D HUS. Methods: Adult cancer outpatients were surveyed cross-sectionally using the Edmonton Symptom Assessment System (ESAS), the EQ-5D-3L, and clinico-demographic variables. ESAS rated symptoms from 0-10. HUS were derived from the EQ-5D-3L (Canadian conversion). ESAS symptoms were correlated with HUS using Spearman correlation coefficients (R). Multivariable regression analyses identified independent variables associated with HUS. Results: Of 764 patients across multiple cancers, 27% were palliative at assessment. There were significant correlations between each ESAS symptom score and HUS (p < 0.0001 for each comparison; Spearman coefficients: 0.20 to 0.42); the highest were for pain (R = 0.42), fatigue (R = 0.39), and depression (R = 0.35). In multivariable analyses, pain and depression symptom scores remained highly associated with HUS (p < 0.0001 each), while fatigue was of borderline significance (p = 0.059). Despite correlations, prediction of HUS by global ESAS scores was poor, with the highest prediction ability at 0.25. Because ESAS and EQ5D shared common symptom questions (pain, depression/anxiety), we evaluated if we could map and replace these EQ5D questions with ESAS. Spearman correlation of pain symptoms by EQ5D and ESAS was 0.95, while for depression/anxiety, 0.90. Replacing both questions yielded a correlation of 0.83. Conclusions: HUS is associated with many cancer symptoms, including pain, fatigue, nausea, depression, anxiety, drowsiness, loss of appetite, and shortness of breath. EQ-5D-3L derived HUS have clinical utility. On exploratory analysis, we cannot replace accurately the EQ5D with ESAS, although we can replace two symptom questions within EQ5D with ESAS with high correlation. Legal entity responsible for the study: Princess Margaret Cancer Centre, UHN, Toronto, Canada Funding: Cancer Care Ontario Disclosure: All authors have declared no conflicts of interest.

Randomized trials have conclusively shown higher rates of chronic graft-versus-host disease with filgrastim-stimulated apheresis peripheral blood as a donor source than unstimulated bone marrow. The Canadian Blood and Marrow Transplant Group conducted a phase 3 study of adults who received either filgrastim-stimulated apheresis peripheral blood or filgrastim-stimulated bone marrow from human leukocyte antigen-identical sibling donors. Because all donors received the identical filgrastim dosing schedule, this study allowed for a controlled evaluation of the impact of stem cell source on development of chronic graft-versus-host disease. One hundred and twenty-one evaluable filgrastim-stimulated apheresis peripheral blood and filgrastim-stimulated bone marrow patient donor products were immunologically characterized by flow cytometry and tested for their association with acute and chronic graft-versus-host disease within 2 years of transplantation. The immune populations evaluated included, regulatory T cells, central memory and effector T cells, interferon γ positive producing T cells, invariate natural killer T cells, regulatory natural killer cells, dendritic cell populations, macrophages, and activated B cells and memory B cells. When both filgrastim-stimulated apheresis peripheral blood and filgrastim-stimulated bone marrow were grouped together, a higher chronic graft-versus-host disease frequency was associated with lower proportions of CD56bright natural killer regulatory cells and interferon γ-producing T helper cells in the donor product. Lower CD56bright natural killer regulatory cells displayed differential impacts on the development of extensive chronic graft-versus-host disease between filgrastim-stimulated apheresis peripheral blood and filgrastim-stimulated bone marrow. In summary, while controlling for the potential impact of filgrastim on marrow, our studies demonstrated that CD56bright natural killer regulatory cells had a much stronger impact on filgrastim-stimulated apheresis peripheral blood than on filgrastim-stimulated bone marrow. This supports the conclusion that a lower proportion of CD56bright natural killer regulatory cells results in the high rate of chronic graft-versus-host disease seen in filgrastim-stimulated apheresis peripheral blood. clinicaltrials.gov Identifier: 00438958.

Illness intrusiveness results when medical conditions and their treatment interfere with continued participation in lifestyles, valued activities, and interests. The Illness Intrusiveness theoretical framework outlines the sources, consequences, and moderator variables that shape the psychosocial impact of illness intrusiveness on subjective well-being. This chapter outlines the illness intrusiveness theoretical framework and reviews the empirical evidence. It critiques the published literature that evaluates self-management efforts to minimize illness intrusiveness to preserve subjective well-being. It concludes with suggestions for future research. An appendix addresses the measurement of illness intrusiveness and reviews the literature bearing on the development and psychometric evaluation of the Illness Intrusiveness Ratings Scale.

Randomized trials have conclusively shown higher rates of chronic graft-versus-host disease with filgrastim-stimulated apheresis peripheral blood as a donor source than unstimulated bone marrow. The Canadian Blood and Marrow Transplant Group conducted a phase 3 study of adults who received either filgrastim-stimulated apheresis peripheral blood or filgrastim-stimulated bone marrow from human leukocyte antigen-identical sibling donors. Because all donors received the identical filgrastim dosing schedule, this study allowed for a controlled evaluation of the impact of stem cell source on development of chronic graft-versus-host disease. One hundred and twenty-one evaluable filgrastim-stimulated apheresis peripheral blood and filgrastim-stimulated bone marrow patient donor products were immunologically characterized by flow cytometry and tested for their association with acute and chronic graft-versus …

Cancer self-management aims to minimize the physical and psychosocial suffering that people can experience due to cancer and its treatment. The self-management of cancer is important in light of changes to the cancer-care system that rely on the affected person to administer and follow treatments (e.g., chemotherapy) and to initiate changes to lifestyle (e.g., physical activity) or health behavior (e.g., smoking cessation) to maximize treatment benefits and prevent complications or recurrence. This chapter highlights distinctions between chronic medical conditions and cancer. It describes the essential elements of self-management programs and the application of self-management skills to the problems introduced by cancer. It reviews and critiques the cancer self-management literature in relation to four categories of self-management targets and offers suggestions for future research.

Glioblastoma (GBM) is the most common adult CNS malignancy but its impact on quality of life (QOL) is poorly understood. In other patient populations, illness intrusiveness (the extent to which disease and treatment disrupts valued activities and interests) is associated with low subjective well-being, after controlling for disease and treatment variables. In this cross-sectional cohort study, we examined the relations among illness intrusiveness, disease burden, and subjective well-being in GBM. 73 GBM patients completed validated self-report measures of depression, positive affect, illness intrusiveness, and health-related QOL. Responses were compared to data from six other cancer groups using repeated measures analyses of variance. Hierarchical multiple-regression analyses tested the hypothesis that illness intrusiveness accounts for well-being after controlling for the effects of disease burden. GBM patients reported less positive affect, more depression, and more illness intrusiveness than people with other cancers. Illness intrusiveness correlated with depression and (low) positive affect. Associations among cancer symptoms, depression, and positive affect decreased when illness intrusiveness was added to regression equations. Good performance status and high cancer-symptom burden were associated with illness intrusiveness and depression. GBM patients report greater distress, lower positive affect, and more illness intrusiveness than people with other cancers. Subjective well-being is mediated in part by illness intrusiveness in this population. In addition to medical treatment, efforts to help patients remain engaged in valued activities and interests may help preserve QOL after the diagnosis of a GBM.

Stigma appears to influence emotional distress and well-being in cancer survivors, but cross-cultural differences have been ignored. Previous studies suggest that stigma may be especially relevant for survivors of Asian origin. However, their study designs (e.g. focused on female cancers, qualitative designs, and an absence of comparison groups) limit the strength of this conclusion. We hypothesized that (1) Asian-born Chinese immigrants (AI) would report more perceived cancer-related stigma than Western-born Caucasians (WBC); and (2) the impact of stigma on emotional distress and well-being would be greater in AI as compared to WBC. Head and neck cancer survivors (n = 118 AI and n = 404 WBC) completed measures of well-being, emotional distress, and a three-item indicator of stigma in structured interviews. The majority of respondents (59%) reported one or more indicators of stigma. Stigma correlated significantly with emotional distress (r = .13, p = .004) and well-being (r = -.09, p = .032). Contrary to our hypotheses, WBCs and AIs did not differ in reported stigma nor did we detect differences in its psychosocial impact. Stigma exerts a deleterious psychosocial impact on head and neck cancer survivors. It did not differ significantly between AI and WBC survivors.

Adjuvant breast radiation therapy (RT) is a standard treatment option in women with early-stage breast cancer following lumpectomy. Timeliness of RT treatment can impact patient satisfaction. The objectives of this study are to assess 1) patient satisfaction of their breast RT, 2) patient preference for timing of RT start after Ct simulation (CTSim), and 3) factors that influence patient stress and quality of life. Women undergoing whole breast RT were given a survey before RT start and at treatment completion. Patients were offered treatment either through the conventional process (ConvProcess), where RT starts within 1-2 weeks of CTSim, or the QuickStart (QS) process, where RT starts 1 day after CTSim. The pre-treatment (PRE-Tx) survey included social and demographic questions and the post-treatment (POST-Tx) survey included questions relating to social climate and patient satisfaction. Questions of RT start preference, stress (Perceived Stress Scale [PSS]) and quality of life (Illness Intrusiveness Ratings Scale [IIRS]), were assessed both at PRE and POST-Tx. Analysis of covariance was used to determine if RT process impacted PSS and IIRS, and t-tests were used as a secondary analysis. Fisher's Exact test was used where appropriate. 96 patients completed the PRE-Tx survey and 88 completed both surveys (QS process n = 28; ConvProcess n = 60). All patients indicated they had a positive experience with the RT team (strongly agree-64%; agree-36%) and would recommend their care (strongly agree-75%; agree-25%). At PRE-Tx, 94% of the QS patients preferred to start RT within a day of CTSim compared to 16% of ConvProcess patients. The preference of ConvProcess patients changed significantly compared to QS patients at POST-TX (P<0.0001); 63% of ConvProcess and 96% of QS patients strongly agreed/agreed that given a choice they would prefer to start RT the next day after CTSim. The overall PSS for all patients were not different PRE and POST-Tx (P = .8) and stress levels did not differ significantly between QS and ConvProcess patients (P = .76). For both groups, health was the most common stress. The IIRS for ConvProcess patients was 37.6 (PRE-TX) and 39 (POST-TX), and for QS patients was 32 (PRE-TX) and 31.8 (POST-TX); there was no difference in IIRS of ConvProcess and QS patients (P = .2). However, subscales of IIRS showed an increase in illness interference with aspects of Physical Recreation and Social relationships for ConvProcess patients compared to QS patients (P = .03). Women undergoing whole breast RT were satisfied with their care and preferred to start RT quickly following their CTSim. Their strongest stressor was health and their stress levels were unchanged at RT completion. Patient involvement and selection of RT timing may impact on their views of how treatment interferes with their lifestyle and social relationships.

PURPOSE:Cultural values shape a woman's experience of disease and introduce novel stressors that influence psychosocial needs and adaptation. This literature review examines the psychosocial impact of breast cancer in South Asian women, a large group that has received little attention in this regard.METHODS:We conducted a comprehensive review of the literature published before April 2014 using Ovid MEDLINE, PsychINFO, PubMED, CINHAL, EMBASE, and Sociological Abstracts. We searched for articles about the psychosocial impact of breast cancer in South Asian women. We retained 23 studies for review.RESULTS:The literature concerning South Asian women's experiences identified culturally linked themes that play significant roles in shaping the illness experience; e.g., stigma and breast cancer, low priority of women's health, collective experience of disease, and religion and spirituality.CONCLUSION:There is a growing need for culturally sensitive care for South Asian women. By understanding the core cultural values and integrating them into clinical practice, Western healthcare providers may improve the quality of care they deliver and help women to extract the maximum benefit.IMPLICATIONS FOR CANCER SURVIVORS:Developing culturally competent support services may enhance effectiveness in addressing the healthcare needs of South Asian women and may serve other ethnic minorities in North America.

Cancer patients report that help in managing fear of cancer recurrence (FCR) is one of their greatest unmet needs. Research on FCR has been limited by the very few validated, multi-dimensional measures of this construct. One exception is the Fear of Cancer Recurrence Inventory (FCRI), originally developed and empirically validated in French. The present study validated the English version of the FCRI.

Background Pretreatment with anti-thymocyte globulin (ATG) decreases the occurrence of chronic graft-versus-host disease (CGVHD) after haemopoietic cell transplantation from an unrelated donor, but evidence of patient benefit is absent. We did a study to test whether ATG provides patient benefit, particularly in reducing the need for long-term immunosuppressive treatment after transplantation.Methods We did a phase 3, multicentre, open-label, randomised controlled trial at ten transplant centres in Canada and one in Australia. Eligible patients were aged 16 to 70 years with any haematological malignancy and a Karnofsky score of at least 60 receiving either myeloablative or non-myeloablative (or reduced intensity) conditioning preparative regimens before haemopoietic cell transplantation from an unrelated donor. We allocated patients first by simple randomisation (1:1), then by a minimisation method, to either pretransplantation rabbit ATG plus standard GVHD prophylaxis (ATG group) or standard GVHD prophylaxis alone (no ATG group). We gave a total dose of ATG of 4.5 mg/kg intravenously over 3 days (0.5 mg/kg 2 days before transplantation, 2.0 mg/kg 1 day before, and 2.0 mg/kg 1 day after). The primary endpoint was freedom from all systemic immunosuppressive drugs without resumption up to 12 months after transplantation. Analysis was based on a modified intention-to-treat method. This trial was registered at ISRCTN, number 29899028.Findings Between June 9, 2010, and July 8, 2013, we recruited and assigned 203 eligible patients to treatment (101 to ATG and 102 to no ATG). 37 (37%) of 99 patients who received ATG were free from immunosuppressive treatment at 12 months compared with 16 (16%) of 97 who received no ATG (adjusted odds ratio 4.25 [95% CI 1.87-9.67]; p=0.00060. The occurrence of serious adverse events (Common Terminology Criteria grades 4 or 5) did not differ between the treatment groups (34 [34%] of 99 patients in the ATG group vs 41 [42%] of 97 in the no ATG group). Epstein-Barr virus reactivation was substantially more common in patients who received ATG (20 [one of whom died-the only death due to an adverse event]) versus those who did not receive ATG (two [no deaths]). No deaths were attributable to ATG.Interpretation ATG should be added to myeloblative and non-myeloblative preparative regimens for haemopoietic cell transplantation when using unrelated donors. The benefits of decreases in steroid use are clinically significant. Epstein-Barr virus reactivation is increased, but is manageable by prospective monitoring and the use of rituximab. Future trials could determine whether the doses of ATG used in this trial are optimum, and could also provide additional evidence of a low relapse rate after non-myeloablative regimens.

Background The kidney disease questionnaire is a tool constructed to measure knowledge of hemodialysis patients on topics related chronic kidney disease and renal transplantation. Aim The aims of the study were the translation and cultural adaptation in the Greek language of the translation and cultural adaptation of the Kidney Disease Questionnaire. Methodology The process included the forward and back translation of the questionnaire as well as its cultural adaptation according to World Health Organization guidelines. The questionnaire was translated from the source language (English) to the target language (Greek) by three independent translators. Next another person who had a very good command of both langu ages made the back translation of the questionnaire. The translation produced has not any important difference to the original one. T h en the questionnaire was pilot tested on 10 hemodialysis patients who approved the cultural adaptation and then a s emantic validation was followed. Results The questionnaire was easily understand from the majority of the participants and a 90% of them considered the tool as very good, and found the questions easily understandable and important for their health condition. Co nclusions After the process of translation and cultural adaptation, the Kidney Disease Questionnaire is a reliable and available research instrument for Greek researchers in order to measure hemodialysis patients’ knowledge on topics related to End Stage R enal Disease.

BACKGROUND:Distancing (i.e. construing oneself as dissimilar to a negatively-stereotyped group) preserves self-esteem and may benefit other domains of subjective well-being. Head and neck cancer (HNC) is stigmatized because major risk factors include avoidable lifestyle variables (smoking, alcohol consumption, and human papilloma virus). Because the benefits of coping efforts, such as distancing, are most evident when people are under stress, we hypothesize that the psychosocial benefits of distancing will be most pronounced when cancer and its treatment interfere substantially with participation in valued activities and interests (i.e. high illness intrusiveness). OBJECTIVE:To test whether distancing preserves self-esteem and other domains of subjective well-being (SWB) in HNC, especially when illness intrusiveness is high. METHODS:Five hundred and twenty-two HNC outpatients completed a semantic-differential measure of perceived similarity to the 'cancer patient' and measures of illness intrusiveness, self-esteem, depressive symptoms, and psychological well-being in structured interviews. Evaluations of the 'cancer patient' reflected cancer stereotypes. RESULTS:A statistically significant interaction supported the central hypothesis: When people held negative stereotypes, those who construed themselves as similar to the 'cancer patient' reported lower self-esteem than those who construed themselves as dissimilar. Distancing did not benefit other SWB variables. Some results were counter-intuitive: e.g. Emotional distress increased with increasing illness intrusiveness when people did not hold negative cancer stereotypes, but when they held highly negative stereotypes, distress decreased with increasing illness intrusiveness. CONCLUSIONS:Overall, distancing preserved self-esteem in people with HNC and was associated with benefits in other SWB domains.