Development of a psychoeducational intervention for people affected by pancreatic cancer.

BACKGROUND: Pancreatic cancer has one of the highest mortality rates of any malignancy, placing a substantial burden on patients and families with high unmet informational and supportive care needs. Nevertheless, access to psychosocial and palliative care services for the individuals affected is limited. There is a need for standardized approaches to facilitate adjustment and to improve knowledge about the disease and its anticipated impact. In this intervention-development paper guided by implementation science principles, we report the rationale, methods, and processes employed in developing an interdisciplinary group psychoeducational intervention for people affected by pancreatic cancer. The acceptability and feasibility of implementation will be evaluated as a part of a subsequent feasibility study. METHODS: The Schofield and Chambers framework for designing sustainable self-management interventions in cancer care informed the development of the intervention content and format. The Consolidated Framework for Implementation Research served as an overarching guide of the implementation process, including the development phase and the formative evaluation plan of implementation. RESULTS: A representative team of stakeholders collaboratively developed and tailored the intervention content and format with attention to the principles of implementation science, including available resourcing. The final intervention prototype was designed as a single group-session led by an interdisciplinary clinical team with expertise in caring for patients with pancreatic cancer and their families and in addressing nutrition guidelines, disease and symptom management, communication with family and health care providers, family impact of cancer, preparing for the future, and palliative and supportive care services. CONCLUSIONS: The present paper describes the development of a group psychoeducational intervention to address the informational and supportive care needs of people affected by pancreatic cancer. Consideration of implementation science during intervention development efforts can optimize uptake and sustainability in the clinical setting. Our approach may be utilized as a framework for the design and implementation of similar initiatives to support people affected by diseases with limited prognoses.

A two-dimensional model of disrupted body integrity: initial evaluation in head and neck cancer.

PURPOSE: This cross-sectional study presents an initial psychometric evaluation of a two-dimensional (perceptual and evaluative) conceptualization and measure of disrupted body integrity (DBI)-illness-related disruption of the sense of the body as an integrated, smoothly functioning whole. METHODS: Male and female head and neck cancer (HNC) outpatients (N = 98) completed a questionnaire package prior to outpatient visits. MAIN OUTCOME MEASURES: The Disrupted Body Integrity Scale (DBIS) was developed to measure the perceptual and evaluative facets of DBI. Self-report measures of disfigurement, stigma, depressive symptoms, and negative affect were also completed. RESULTS: Almost all DBIS subscales demonstrated good internal consistency. Results largely supported the DBIS's construct validity. The majority of subscales correlated within the predicted range of r's = .40-.70. Almost all DBIS constructs were positively linked with either depressive symptoms or disfigurement. None correlated with positive affect, and only two subscales, abnormal sensations (perceptual) and physical vulnerability (evaluative), correlated with negative affect. DBIS constructs showed little relation with stigma, once disfigurement effects were controlled for. CONCLUSIONS: Findings offer preliminary evidence for the DBIS and the relevance of DBI in HNC. Further evaluation of DBI in disease adaptation and the DBIS's factor structure is warranted.

Quality of life trajectories during the first year following hematopoietic cell transplantation: an inception cohort study.

BACKGROUND: Allogeneic hematopoietic cell transplantation (HCT) affects quality of life (QOL). Patient-reported outcomes examine symptoms, side effects, distress, and physical and social problems, but positive outcomes have been ignored. This inception cohort study followed people over the first year following HCT to document positive and negative outcomes. METHODS: People with hematologic cancers treated by HCT completed complementary self-report instruments at four milestones: (a) pre-transplant (N = 88); (b) engraftment (N = 80); (c) short-term post-discharge (N = 60); and (d) long-term post-discharge (N = 45). We examined symptoms, side effects, illness intrusiveness, depressive symptoms, positive and negative affect, and self-esteem. We compared QOL in HCT with diverse published values. RESULTS: QOL deteriorated following HCT. Most variables returned to baseline by short-term post-discharge, but self-esteem and illness intrusiveness required more time. Illness intrusiveness at 1 year post-discharge was higher in HCT than other cancer groups; negative affect, too, was higher, but HCT survivors also reported higher positive affect. HCT and other cancer survivors reported similar depressive symptom levels. Compared to healthy people, HCT survivors reported more severe depressive symptoms, but similar positive and negative affect. CONCLUSIONS: QOL changes dramatically following HCT. People report more interference with valued activities and interests after 1 year than survivors of other cancers, but depressive symptoms are not higher. Positive and negative affect are equivalent to healthy community residents. Continued involvement in psychologically meaningful activities may preserve QOL.

Do stigma and its psychosocial impact differ between Asian-born Chinese immigrants and Western-born Caucasians with head and neck cancer?

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.

Illness intrusiveness and subjective well-being in patients with glioblastoma.

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.

Empirical validation of the English version of the Fear of Cancer Recurrence Inventory.

PURPOSE: 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. METHODS: The FCRI was translated into English using a forward-backward translation procedure and pilot-tested with 17 English-speaking cancer patients. Cross-cultural equivalency of the French and English versions was established by administering both forms to 42 bilingual cancer patients. Last, 350 English-speaking breast, colon, prostate, or lung cancer patients were asked to complete the FCRI. A subsample (n = 135) was mailed the FCRI again one month later to evaluate test-retest reliability. RESULTS: The English translation of the FCRI was well accepted by participants. There was no item-bias when comparing bilingual participants' answers on both versions. A confirmatory factor analysis supported the hypothesized seven-factor structure. The English version has high internal consistency (α = .96 for the total scale and .71-.94 for the subscales) and test-retest reliability (r = .88 for the total scale and 56-.87 for the subscales). CONCLUSIONS: The English version of the FCRI is a reliable and valid measure of FCR applicable to breast, colon, prostate, and lung cancer patients. Its multi-dimensional nature makes it an attractive research and clinical tool to further our knowledge of FCR.

Cultural considerations for South Asian women with breast cancer.

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.

Distancing, self-esteem, and subjective well-being in head and neck cancer.

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.

Do behavioural self-blame and stigma predict positive health changes in survivors of lung or head and neck cancers?

UNLABELLED: Survivors of lung or head and neck cancers often change tobacco and alcohol consumption after diagnosis, but few studies have examined other positive health changes (PHCs) or their determinants in these groups. The present study aims to: (a) document PHCs in survivors of lung (n = 107) or head and neck cancers (n = 99) and (b) examine behavioural self-blame and stigma as determinants of PHCs. We hypothesised that: (a) survivors would make a variety of PHCs; (b) behavioural self-blame for the disease would positively predict making PHCs; and (c) stigma would negatively predict making PHCs. METHODS: Respondents self-administered measures of PHC, behavioural self-blame, and stigma. Hierarchical multiple regression analysis tested the hypotheses. RESULTS: More than 65% of respondents reported making PHCs, the most common being changes in diet (25%), exercise (23%) and tobacco consumption (16.5%). Behavioural self-blame significantly predicted PHCs but stigma did not. However, both behavioural self-blame and stigma significantly predicted changes in tobacco consumption. CONCLUSIONS: Many survivors of lung or head and neck cancers engage in PHCs, but those who do not attribute the disease to their behaviour are less likely to do so. Attention to this problem and additional counselling may help people to adopt PHCs.

Negative cancer stereotypes and disease-specific self-concept in head and neck cancer.

BACKGROUND: Life-threatening diseases, such as head and neck cancer (HNCa), can stimulate the emergence of a new disease-specific self-concept. We hypothesized that (i) negative cancer-stereotypes invoke distancing, which inhibits the adoption of a disease-specific self-concept and (ii) patient characteristics, disease and treatment factors, and cancer-related stressors moderate the phenomenon. METHODS: Head and neck cancer outpatients (N = 522) completed a semantic-differential measure of disease-specific self-concept (perceived similarity to the 'cancer patient') and other self-report measures in structured interviews. Negative cancer-stereotypes were represented by the number of semantic-differential dimensions (0-3) along which respondents evaluated the stereotypic 'cancer patient' negatively (i.e., negative valence). We tested the two-way interactions between negative valence and hypothesized moderator variables. RESULTS: We observed significant negative valence × moderator interactions for the following: (i) patient characteristics (education, employment, social networks); (ii) disease and treatment factors (cancer-symptom burden); and (iii) cancer-related stressors (uncertainty, lack of information, and existential threats). Negative cancer stereotypes were consistently associated with distancing of self from the stereotypic 'cancer patient,' but the effect varied across moderator variables. All significant moderators (except employment and social networks) were associated with increasing perceived similarity to the 'cancer patient' when respondents maintained negative stereotypes; perceived similarity decreased when people were employed or had extensive social networks. Moderator effects were less pronounced when respondents did not endorse negative cancer stereotypes. DISCUSSION: When they hold negative stereotypes, people with HNCa distance themselves from a 'cancer patient' identity to preserve self-esteem or social status, but exposure to cancer-related stressors and adaptive demands may attenuate these effects.

Waiting for thyroid surgery: a study of psychological morbidity and determinants of health associated with long wait times for thyroid surgery.

OBJECTIVES: Patients with thyroid pathology tend have longer surgical wait times. Uncertainty during this wait can have negative psychologically impact. This study aims to determine the degree of psychological morbidity in patients waiting for thyroid surgery. STUDY DESIGN: Prospectively assessing patients pre- and postoperative psychological morbidity (level 2c). METHODS: Patients waiting for thyroidectomy were mailed a sociodemographic and four psychological morbidity questionnaires: Impact of Events Scale-Revised (IES-R), Illness Intrusiveness Ratings Scale (IIRS), Perceived Stress Scale (PSS) and Hospital Anxiety and Depression Scale (HADS). We assessed whether anxiety was related to length of wait and a number of clinical/sociodemographic factors. RESULTS: We achieved a 53% response rate over a 3-year period, with 176 patients providing complete preoperative data; and 74 (42%) completed postoperative data. The average age was 53 (± 12) years; 82% were female. Respondents with a suspicious or known malignancy waited an average of 107 days while those with benign neoplastic biopsies waited an average of 218 days for thyroidectomy. Respondents reported substantial psychological morbidity with high IES-R, IIRS, PSS, and HADS scores. There was no significant association between psychological morbidity and wait times, clinical or sociodemographic factors. Postoperative anxiety decreased significantly in all psychological morbidity measures except for the IIRS. CONCLUSIONS: Patients waiting for thyroid surgery have mild to moderate psychological morbidity and long wait times for surgery. These appear not to be related. Psychological morbidity decreases after surgery. Reducing wait time can potentially reduce the time that patients have to live with unnecessary stress and anxiety.

The burden of stress in head and neck cancer.

BACKGROUND: Head and neck cancer (HNCa) introduces numerous stressors. We developed the Cancer-Related Stressors Checklist (CRSC), which documents exposure to seven categories of common stressors and emotional distress. We surveyed HNCa survivors and examined associations among exposure to cancer-related stressors, illness intrusiveness (i.e., cancer-induced interference with lifestyles, activities, and interests), and distress. We also investigated whether reported exposure rates differ between self-administered and interviewer-administered measures. METHODS: Respondents included HNCa survivors, stratified by sex, who participated in one of two clinical studies (N1 = 162; N2 = 408) examining the psychosocial impact of illness intrusiveness. All completed the CRSC, the Center for Epidemiologic Studies Depression Scale, and the Illness Intrusiveness Ratings Scale. Study 1 respondents self-administered the instruments; an interviewer administered them in Study 2. We gathered clinical data by self-report and from medical records. RESULTS: High inter-rater reliability corroborated the 8-subscale structure of the CRSC (Krippendorff alpha = .92). Cancer-related stressor exposures differed significantly across categories (interpersonal stressors were most common). Controlling for empirically identified covariates and distress, exposure to each cancer-related stressor correlated significantly and uniquely with illness intrusiveness. All stressor categories correlated significantly with distress, but coefficients were low to moderate, substantiating incremental validity. Respondents reported fewer exposures when materials were self-administered as compared with interviewer-administered, but reported distress levels did not differ by mode of administration. CONCLUSIONS: Cancer-related stressors are common and burdensome in HNCa and, therefore, merit clinical attention. Identifying specific stressors will allow more targeted and effective interventions to alleviate and prevent distress.

The psychosocial impact of stigma in people with head and neck or lung cancer.

BACKGROUND: Lung and head and neck cancers are widely believed to produce psychologically destructive stigma because they are linked to avoidable risk-producing behaviors and are highly visible, but little research has tested these ideas. We examined cancer-related stigma, its determinants, and its psychosocial impact in lung (n = 107) and head and neck cancer survivors (n = 99) ≤ 3 years post-diagnosis. We investigated cancer site, self-blame, disfigurement, and sex as determinants, benefit finding as a moderator, and illness intrusiveness as a mediator of the relation between stigma and its psychosocial impact. METHODS: Prospective participants received questionnaire packages 2 weeks before scheduled follow-up appointments. They self-administered widely used measures of subjective well-being, distress, stigma, self-blame, disfigurement, illness intrusiveness, and post-traumatic growth. RESULTS: As hypothesized, stigma correlated significantly and uniquely with negative psychosocial impact, but contrary to common beliefs, reported stigma was comparatively low. Reported stigma was higher in (i) men than women, (ii) lung as compared with head and neck cancer, and (iii) people who were highly disfigured by cancer and/or its treatment. Benefit finding buffered stigma's deleterious effects, and illness intrusiveness was a partial mediator of its psychosocial impact. CONCLUSIONS: Stigma exerts a powerful, deleterious psychosocial impact in lung and head and neck cancers, but is less common than believed. Patients should be encouraged to remain involved in valued activities and roles and to use benefit finding to limit its negative effects.

Measurement invariance of the Illness Intrusiveness Ratings Scale's three-factor structure in men and women with cancer.

OBJECTIVE: Illness- and treatment-related disruptions to valued activities and interests (illness intrusiveness) are central to quality of life in chronic disease and are captured by three subscales of the Illness Intrusiveness Ratings Scale (IIRS): the Instrumental, Intimacy, and Relationships and Personal Development subscales. Using individual (CFA) and multisample confirmatory factor analyses (MSCFA), we evaluated measurement invariance of the IIRS's 3-factor structure in men and women with cancer. METHOD: Men (n = 210) and women (n = 206) with 1 of 4 cancer diagnoses (gastrointestinal, head and neck, lymphoma, lung) recruited from outpatient clinics completed the IIRS. In the MSCFA, we applied an analysis of means and covariance structures approach to test increasingly stringent equality constraints on factor structure parameters to evaluate weak, strong, and strict measurement invariance of the 3-factor structure between men and women. RESULTS: Individual CFAs demonstrated fit of the hypothesized 3-factor structure for men and women, although more consistently for men. The 3-factor structure was superior to an alternative 1-factor structure. MSCFA results indicated that parameters of the 3-factor structure could be considered equivalent between the sexes up to the level of strong invariance. Strict invariance was not supported. CONCLUSIONS: Overall, IIRS scores can be interpreted similarly for men and women with cancer. Illness intrusiveness can be considered as important in the psychosocial adaptation of people with cancer as it is for people affected by other chronic conditions.

Do ongoing lifestyle disruptions differ across cancer types after the conclusion of cancer treatment?

INTRODUCTION: Cancer interferes with participation in valued lifestyle activities (illness intrusiveness) throughout post-treatment survivorship. We investigated whether illness intrusiveness differs across life domains among survivors with diverse cancers. Intrusiveness should be highest in activities requiring physical/cognitive functioning (instrumental domain). Intrusiveness into relationship/sexual functioning (intimacy domain) should be higher in prostate, breast, and gastrointestinal cancers than in others. METHODS: Cancer outpatients (N = 656; 51% men) completed the Illness Intrusiveness Ratings Scale (IIRS) during follow-up. We compared IIRS Instrumental, Intimacy, and Relationships and Personal Development [RPD] subscale and total scores across gastrointestinal, lung, lymphoma, head and neck, prostate (men), and breast cancers (women), comparing men and women separately. RESULTS: Instrumental subscale scores (M(men) = 3.05-3.80, M(women) = 3.02-3.63) were highest for all groups, except prostate cancer. Men with prostate cancer scored higher on Intimacy (M = 3.40) than Instrumental (M = 2.48) or RPD (M = 1.59), p's < .05; their Intimacy scores did not differ from men with gastrointestinal or lung cancer. Women collectively showed higher Instrumental (M = 3.39) than Intimacy (M = 2.49) or RPD scores (M = 2.27), p's < .001, but not the hypothesized group difference in Intimacy. CONCLUSIONS: Post-treatment survivors continue to experience some long-term interference with activities requiring physical and cognitive functioning. Sexual adjustment may be of special concern to men when treatments involve genitourinary functioning. IMPLICATIONS FOR CANCER SURVIVORS: Ongoing monitoring with the IIRS to detect lifestyle interference throughout survivorship may enhance quality of life. Screening and intervention should target particular life domains rather than global interference.

Using the illness intrusiveness ratings scale to understand health-related quality of life in chronic disease.

OBJECTIVE: Illness intrusiveness is a common, underlying determinant of quality of life in people affected by chronic disease. Illness intrusiveness results from disease- and treatment-induced disruptions to lifestyles, activities, and interests (i.e., interference with psychologically meaningful activity). This paper introduces the Illness Intrusiveness Ratings Scale (IIRS), a 13-item, self-report instrument. The IIRS can be scored to generate a total score or three subscale scores: relationships and personal development, intimacy, and instrumental. In addition to describing the IIRS, the paper presents the theoretical framework in which it is anchored, reviews the evidence, and reports psychometric properties. METHODS: Qualitative literature review. RESULTS: Findings support the IIRS's reliability (internal consistency and test-retest), validity (construct, criterion-related, and discriminant), sensitivity to change, and factorial invariance across numerous chronic-disease groups. The paper reports IIRS reliability coefficients and normative statistics for 36 chronic, medical and psychiatric patient populations. CONCLUSION: The IIRS taps the extent to which disease- and treatment-related factors interfere with psychologically meaningful activity among people affected by chronic disease. It provides a valid, reliable measure that is easy to administer and unequivocally interpretable rendering it suitable for research designed to estimate the psychosocial impact of chronic disease and to document (and compare) the effectiveness of therapeutic interventions.

Exercise program to enhance physical performance and quality of life of older hemodialysis patients: a feasibility study.

OBJECTIVE: Evaluate the feasibility of implementing a combined in-hospital and home-based exercise program in older hemodialysis (HD) patients. DESIGN: A prospective longitudinal 12-week pilot study. SETTING: A university hospital HD unit and patients' homes. PARTICIPANTS: A convenience sample of nine older (>55 years) patients undergoing HD. INTERVENTIONS: An individualized exercise program performed on HD days (3/week) and at home (2-3/week), including aerobic, flexibility, strength exercises and patient education. MAIN OUTCOME MEASURES: Feasibility measure: patient participation. Exercise performance: Duke Activity Status Index (DASI); 2-min walk test (2MWT); Timed-up-and-go (TUG). Quality of life: The Illness Intrusiveness Ratings Scale (IIRS); The Kidney Disease Quality of Life Questionnaire (KDQOL). RESULTS: The mean (SD) age of the patients was 68.1 (7.1). Participation in the in-hospital supervised exercise program was high, with patients exercising during 89% of HD sessions, but was lower for the unsupervised home-based component (56% exercised ≥ 2 times/week). Patients showed a gradual increase in the amount of exercise performed over 12 weeks. The 2MWT, TUG, IIRS and the KDQOL physical composite score demonstrated moderate responsiveness, while the DASI score exhibited only limited responsiveness. CONCLUSIONS: This exercise program and the outcome measures were feasible for older HD patients: in-hospital participation was high, and physical performance and QOL measures exhibited moderate levels of responsiveness. Future, larger studies are needed to demonstrate whether intra-dialysis exercise, with or without home exercise, can lead to improved outcomes in this population.

Cultural syndromes and age moderate the emotional impact of illness intrusiveness in rheumatoid arthritis.

OBJECTIVE: The authors investigated cultural syndromes (multidimensional vectors comprising culturally based attitudes, values, and beliefs) and age as moderators of the emotional impact of illness intrusiveness--illness-induced lifestyle disruptions--in rheumatoid arthritis (RA) and examined illness intrusiveness effects in total and separately for three life domains (relationships and personal development, intimacy, and instrumental). RESEARCH METHOD/DESIGN: People with RA (n = 105) completed the Illness Intrusiveness Ratings, Individualism-Collectivism, and Center for Epidemiologic Studies--Depression scales in a one-on-one interview. RESULTS: Controlling for disease and background characteristics, the association between illness intrusiveness (total score and the Relationships and Personal Development subscale) and distress was inverse when young adults with RA endorsed high horizontal individualism. Illness intrusiveness into intimacy was associated with increased distress, and this intensified when respondents endorsed high vertical individualism, horizontal collectivism, vertical collectivism, or low horizontal individualism. The negative emotional impact of illness intrusiveness into intimacy diminished with increasing age. CONCLUSION: Given an aging and increasingly pluralistic society, diversity can no longer be ignored in addressing the psychosocial impact of chronic, disabling disease.

Quality of life analysis in patients with anterior skull base neoplasms.

BACKGROUND: Significant morbidity is associated with management of anterior skull base neoplasms. The aim of this study was to evaluate the posttreatment patient's quality of life (QOL). METHODS: A retrospective chart review identified 27 patients. QOL tools included the Functional Assessment of Cancer Therapy-Head & Neck, Centre for Epidemiologic Studies Depression Scale (CES-D), Atkinson Life Happiness Rating (ALHR), and Midface Dysfunction Scale (MDS). RESULTS: Postoperative radiotherapy and chemotherapy was required in 16 and 2 patients, respectively. The median FACT, ALHR, and CES-D scores were 118 +/- 21, 9 +/- 2, and 17 +/- 8, respectively. Smell and nasal crusting disturbance was reported by 69% and 61%, respectively. CES-D > 16 and patients with recurrent disease correlated with a lower Total-FACT score. Adjuvant radiotherapy correlated with a lower FACT-H&N score. Patient sex, marital-status, pathology, surgical technique, or complication rate did not correlate with worse QOL. CONCLUSION: Anterior skull base neoplasms survivors have an overall acceptable QOL. Most complaints relate to MDS. Recurrence, adjuvant radiotherapy, and MDS had lower QOL scores.

Emotional distress impacts fear of the future among breast cancer survivors not the reverse.

INTRODUCTION: Fear of the future is one of the most stressful aspects of having cancer. Research to date has conceptualized fear of the future as a precursor of distress or stress-response symptoms. Yet it is equally plausible that distress would predict increased fear of the future or that they would have a reciprocal influence on each other. The purpose of the present study was to examine the bidirectional relations between fear of the future and distress as well as intrusion and avoidance among breast cancer survivors at 3, 7, 11, and 15 months after diagnosis. METHODS: We used a bivariate latent difference score model for dynamic change to examine these bidirectional relationships among 146 early-stage breast cancer survivors. Using Lisrel version 8.80, we examined four models testing different hypothesized relationships between fear of the future and distress and intrusion and avoidance. RESULTS: Based on model fit evaluation, our data shows that decreases in distress over time lead to a reduction of fear of the future but that changes in fear do not lead to changes in distress. On the other hand, there is no relationship between changes in fear of the future and intrusion and avoidance over time. DISCUSSION: Ongoing fear of the future does not appear to be a necessary condition for the development of stress-response symptoms. IMPLICATIONS FOR CANCER SURVIVORS: Future studies need to explore the role of distressing emotions in the development and exacerbation of fear of the future among cancer survivors.