Improvements in cognition in patients converting from thrice weekly hemodialysis to nocturnal hemodialysis: a longitudinal pilot study.

Cognitive impairment has been documented in uremia with partial improvement after dialysis. Nocturnal daily hemodialysis (NHD) is a novel dialysis modality with multiple benefits. Previous reports have shown marked improvements in quality of life, cardiac function, resolution of peripheral vascular disease, and reversal of central sleep apnea. We hypothesized that patients maintained on NHD would have better cognitive functioning than those receiving conventional therapy. Using a longitudinal study design, patients were tested at baseline and again after >or=6 months NHD. At each of the two time points, a battery of 10 neuropsychological tests were used to evaluate three domains of cognitive functioning--attention and working memory skills, psychomotor efficiency and processing speed, and learning efficiency. Clinical subjective symptoms for cognitive functioning and depression were measured using the Patients Assessment of Own Functioning inventory and the Beck Depression Index. Twelve patients (six males, six females) were recruited. Patients were aged 39.6+/-3.3 years at the time of first testing. Thirty-three percent were diabetic, with a mean Charlson comorbidity score of 3.5+/-2.0. Depression (defined as >16 on the Beck Depression Index score) was not seen in any patient. Over the 6-month period, a 22% reduction in cognitive symptoms (P=0.01), 7% improvement in psychomotor efficiency and processing speed (P=0.02), and 32% improvement in attention and working memory (P=0.04) was seen. Learning efficiency scores were unchanged. NHD may be associated with improved general cognitive efficiency as measured by psychomotor efficiency and attention and working memory.

The psychosocial impact of cervical cancer among affected women and their partners.

This study aimed to assess the range and intensity of psychosocial concerns experienced by women with cervical cancer and their male partners. A cross-sectional survey assessed 26 couples where the woman had invasive cervical cancer stage I-IV, up to 2 years posttreatment, using a concerns questionnaire and widely used psychosocial questionnaires. Respondents indicated their concerns about the impact of the disease and treatment as well as general psychosocial impact. Women with cervical cancer and their male partners expressed equal intensities of concern regarding the illness and its treatment, rating sexuality, prognosis, and communication with the treatment team most highly in terms of current concerns. Couples where the patient had a more advanced stage of cancer expressed higher concerns than those with earlier stage disease. Although women with cervical cancer reported more fatigue and illness intrusiveness than their male partners, both experienced disruptions in relationships, intimacy, and instrumental life domains. With increased time posttreatment, concerns differed subtly between affected women and their male partners. Effective psychosocial support for cervical cancer must be provided for both the affected woman and her male partner. Support and information should address the most salient concerns of patients and partners as these evolve over significant clinical milestones.

Are there gender differences in the prescribing of hypnotic medications for insomnia?

Gender differences in the prescribing patterns of general classes of medications for insomnia were examined. The classes of medications included: zopiclone, antidepressants, benzodiazepines, antihistamines and no medication. The sample comprised a sub-set of respondents from 2620 questionnaires of the Canadian Multicentre Sleep Database. Respondents for this database were contacted through physicians, announcements in the media and local pharmacies. The results indicated that gender alone was not associated with differential prescribing for insomnia, nor was gender associated with patterns of medication use such as frequency of taking medication, length of use, taking more or less medication than prescribed or attempts to stop taking medication. Demographic factors were included in the analysis and age and marital status were associated with different prescribing patterns for men and women with insomnia. It is possible that physicians refer to stereotypic expectations when prescribing hypnotics.

Illness intrusiveness among survivors of autologous blood and marrow transplantation.

BACKGROUND: Illness-induced disruptions to lifestyles, activities, and interests (i.e., illness intrusiveness) compromise subjective well-being. The authors measured illness intrusiveness in autologous blood and bone marrow transplantation (ABMT) survivors and compared the results with survivors of solid organ transplants. METHODS: Forty-four of 64 consecutive ABMT survivors referred to the University of Toronto ABMT long-term follow-up clinic completed the Illness Intrusiveness Ratings Scale (IIRS), the Affect Balance Scale (ABS), the Atkinson Life Happiness Rating (ATKLH), the Beck Hopelessness Scale (BHS), and the Center for Epidemiologic Studies Depression (CES-D) Scale. Mean time from ABMT to evaluation was 4.6 +/- 2.8 years. All patients were in remission or had stable disease at the time of evaluation. Autologous blood and bone marrow transplantation patients' IIRS scores were compared with scores reported by recipients of kidney (n = 357), liver (n = 150), lung (n = 77), and heart (n = 60) transplants. RESULTS: Mean IIRS score for the 44 ABMT patients was 37.2 +/- 17 (maximum possible score, 91; minimum possible score, 13). Higher IIRS scores correlated with lower scores on the ABS (r = -0.54; P < 0.0001), and ATKLH (r = -0.44; P = 0.004), and with higher scores on the BHS (r = 0.58; P < 0.0001) and CES-D (r = 0.48; P < 0.0001). The authors compared IIRS scores from the ABMT survivors with scores from recipients of solid organ transplants. Scores were corrected for age, gender, and time from transplant to evaluation. Corrected mean IIRS scores for the marrow (37.5), kidney (38.9), heart (40.0), lung (30.1), and liver (32.3) transplant recipients differed significantly (P < 0.0001 by analysis of covariance). Higher scores among marrow, kidney, and heart transplant survivors were caused by increased scores in the instrumental domain of the IIRS that measures disruptions in health, work, financial situation, and active recreation. CONCLUSIONS: Despite achieving a remission after ABMT, patients continue to experience illness intrusiveness compromising subjective well-being.

Structure of lifestyle disruptions in chronic disease: a confirmatory factor analysis of the Illness Intrusiveness Ratings Scale.

BACKGROUND: The Illness Intrusiveness Ratings Scale (IIRS) measures the extent to which disease or its treatment or both interfere with activities in important life domains. Before comparing IIRS scores within or across groups it is crucial to determine whether a common underlying factor structure exists across patient populations. OBJECTIVE: To investigate the factor structure underlying the IIRS and evaluate its stability across diagnoses. METHODS: IIRS responses from 5,671 respondents were pooled from 15 separate studies concerning quality of life in eight patient groups: rheumatoid arthritis; osteoarthritis; systemic lupus erythematosus; multiple sclerosis; end-stage renal disease (maintenance dialysis); renal transplantation; heart, liver, and lung transplantation; and insomnia. Data were gathered by different methods (eg, interview, self-administered, mail survey) and in diverse contexts (eg, individual vs. group). RESULTS: Exploratory maximum-likelihood factor analysis identified three underlying factors in a randomly selected subset of respondents (n = 400), corresponding to "Relationships and Personal Development," "Intimacy," and "Instrumental" life domains. Confirmatory factor analysis corroborated the stability of this structure in an independent subsample (n = 2100). Complementary goodness-of-fit indices confirmed the consistency of the three-factor solution, corroborating that IIRS scores are uniquely defined across patient populations. Coefficient alpha was high for total and subscale scores. CONCLUSIONS: IIRS scores can be compared meaningfully within and across patient groups. Both total and subscale scores can be used depending on research objectives.

Physical sequelae and self-perceived attachment in adult survivors of childhood cancer.

The association between the physical sequelae of childhood cancer and self-reported attachment behavior was investigated in 97 adult survivors. Attachment was assessed using standardized self-report questionnaires. Functional disability and cosmetic sequelae of the cancer and its treatment were evaluated by the attending oncologist using a standardized rating scale. Results suggest that attachment is not significantly associated with physician-rated physical sequelae, but may be related to the time of onset of the functional deficits, independent of the current age or age at diagnosis. Further, survivors with functional sequelae in adulthood describe themselves as more insecure in their relationships in general and more ambivalent in their relationship with their parents. These findings, if replicated, suggest that the duration of the functional deficits as well as the developmental stage of the individual when they began may be important variables which affect the survivor's capacity to develop and maintain intimate relationships that are secure and satisfying.

Long-term knowledge retention following predialysis psychoeducational intervention.

BACKGROUND/AIMS: Early identification and predialysis psychoeducation are gaining acceptance. Although research supports the immediate value of predialysis interventions, long-term benefits remain unknown. We examined long-term knowledge retention following a psychoeducational intervention. METHODS: 47 progressive renal failure patients completed the Kidney Disease Questionnaire at baseline and 18, 30, 42, and 54 months after initiating renal replacement therapy (RRT; the 'longitudinal' sample). A larger cohort provided data at one or more of these points (n = 132, 117, 101, and 70 at 18, 30, 42, and 54 months, respectively; the 'cross-sectional' sample). RESULTS: Initial knowledge gains among psychoeducation recipients were followed by a significant knowledge advantage for three groups throughout follow-up. Patients who received predialysis psychoeducation either before or after starting dialysis demonstrated superior Kidney Disease Questionnaire scores as compared with those identified before the initiation of RRT who received the usual standard of practice. Patients identified after the initiation of RRT and who received standard education, however, demonstrated the same level of knowledge retention as produced by psychoeducation. The results were identical across the longitudinal and cross-sectional samples. CONCLUSIONS: Patient education produces important benefits in end-stage renal disease, but the incremental value of early intervention remains to be demonstrated.

Illness intrusiveness explains race-related quality-of-life differences among women with systemic lupus erythematosus.

Our objective was to investigate whether quality of life in systemic lupus erythematosus (SLE) differs across ethnoracial groups and to identify factors that may explain race-related differences. Self-administered questionnaire data from 335 White, 40 Black, and 30 Asian women with SLE were obtained from a multi-center database. Measures assessed illness intrusiveness, psychological well-being, depressive symptoms, musculoskeletal pain, and learned helplessness. Extent of SLE disease activity was indexed by self-reported functional-system involvement. Educational attainment was indicated by number of years in school. Principal-components analysis reduced the four psychosocial measures to a single factor score. This represented psychosocial well-being In path analysis. Psychosocial well-being differed significantly across the three groups, with Whites reporting the highest, and Blacks the lowest, levels. Path analysis indicated that illness intrusiveness accounted for this race-related difference. Although disease activity was significantly associated with psychosocial well-being, it did not differ across ethnoracial groups. Illness intrusiveness and educational attainment emerged as independent mediators of the race-related difference in psychosocial well-being. We conclude that race-related quality-of-life differences exist among women with SLE and are mediated independently by illness intrusiveness and educational attainment.

Differences in quality of life across renal replacement therapies: a meta-analytic comparison.

A meta-analysis compared emotional distress and psychological well-being across renal replacement therapies (RRTs) and examined whether differences could be explained by: (1) treatment modalities, (2) case mix, or (3) methodologic rigor. Standard meta-analytic procedures were used to evaluate published comparative studies. Successful renal transplantation was associated with: (1) lower distress (effect size, d = -0.43 SD) and greater well-being (d = 0. 62 SD) than in-center hemodialysis (CHD) and (2) lower distress (d = -0.29 SD) and greater well-being (d = 0.53 SD) than continuous ambulatory peritoneal dialysis (CAPD). CAPD was characterized by greater well-being (d = 0.18 SD) than CHD and CHD was associated with greater distress (d = 0.16 SD) than home hemodialysis. Although methodologic rigor and case-mix differences did not correlate with the magnitude of psychosocial differences across RRTs, 10 of the 12 comparisons (83%) were threatened by publication bias (ie, that nonsignificant comparisons may have been underrepresented in the published literature). Thus, although significant quality-of-life differences were evident across treatment groups, the types of patients representative of the various RRTs also differed significantly in terms of case-mix variables relevant to psychosocial well-being and emotional distress. Published findings indicating differential quality of life across RRTs may thus be attributable to: (1) valid differences in effective renal replacement, reduced medical complications, and lifestyles afforded by these treatment modalities; (2) case-mix differences in the patient samples selected to represent them in research comparisons; or (3) both of these alternative explanations.

Reliability and validity of an observer-rated disfigurement scale for head and neck cancer patients.

BACKGROUND: Facial disfigurement is considered to be one of the most distressing aspects of head and neck cancer and its treatment, but it has been the focus of little systematic study. Existing studies have yielded conflicting results about the psychosocial impact of disfigurement. No studies to date have examined disfigurement using a valid and reliable observer-rated measure. The purpose of the current study was to examine the validity (convergent and discriminant) and the inter-rater reliability of a novel nine-point observer-rated disfigurement scale. METHODS: The sample consisted of 74 ambulatory head and neck cancer patients more than 6 months post treatment. Ratings of disfigurement were assigned independently by surgical and nonsurgical raters. Validity was assessed by comparing the association between disfigurement ratings and sociodemographic and illness treatment variables. Reliability was assessed by examining the concordance between the surgical and nonsurgical ratings. RESULTS: Disfigurement ratings were not associated with several sociodemographic variables, supporting the discriminant validity of the scale. Disfigurement was significantly related to a diagnosis of oral cancer, a history of adjunctive radiation, the type of surgical procedure performed, the degree of physical dysfunction, and the presence of postoperative complications. Observer ratings of disfigurement were significantly related to patient ratings of disfigurement. These findings support the convergent validity of the disfigurement scale. Inter-rater reliability of the scale was high (intraclass correlation coefficient =.91). CONCLUSION: The study provides preliminary evidence for the validity and inter-rater reliability of a novel nine point observer-rated disfigurement scale that may be useful in evaluating the impact of disfigurement on quality of life in head and neck cancer.

The measurement of irritable bowel syndrome (IBS)-related misconceptions in people with IBS.

Irritable bowel syndrome (IBS) is a common chronic disorder affecting between 15% and 22% of Western populations; core symptoms include abdominal pain and disturbed bowel function. Adjusting to living with IBS may entail considerable coping effort and, because medical treatments are largely ineffective, people with IBS must learn to manage the condition themselves. Self-management programs that include an increased awareness of and information relating to chronic illness have been shown to lead to positive benefits. The present article describes the development of the IBS misconceptions scale, an instrument designed to measure the misconceptions held by people with IBS. The final 17-item questionnaire was able to differentiate between three groups expected to differ in terms of IBS-related misconceptions, and showed good validity and reliability. The IBS-MS may be a useful tool in patient education programs, because it should be sensitive to changes in illness-related knowledge gained during intervention programs, and it is hoped that further research will lend further support to its reliability, validity, and usefulness.

Factor analysis of the psychosocial items of the EORTC QLQ-C30 in metastatic breast cancer patients participating in a psychosocial intervention study.

The underlying factor structure of a subset of 12 items, which comprise the psychosocial subscales of the EORTC QLQ-C30 was explored in a group of women, all with metastatic breast cancer who were participating in a psychosocial intervention study. Two main factors were identified in this exploratory factor analysis, representing "emotional distress" and "functional ability" dimensions. A preliminary assessment of the external validity of the two factor structure was undertaken. The results support the validity of a summative "emotional distress" and "functional ability" score in this sample of patients. The "functional ability" score discriminated well for subgroups defined by clinical status indicators (e.g., performance status, pain, chemotherapy treatment, fatigue). The "emotional distress" subscale discriminated with respect to suffering, fatigue and sleep disturbance. Both subscales converged with related concepts measured by independent instruments, providing support for convergent validity. Summative index scores may be advantageous for application in particular research situations; applying quality adjustments in health policy analyses; for screening purposes; to monitor populations and make comparisons across broad groups and as stratification variables in clinical trials. Further research to confirm the 2 factor structure is required in other samples before the interpretation can be accepted with confidence.

Improving medication adherence through patient education distinguishing between appropriate and inappropriate utilization. Patient Education Study Group.

OBJECTIVE: To evaluate the effectiveness of a computer assisted educational intervention to facilitate appropriate utilization of an antiinflammatory medication (Arthrotec) and investigate the mechanism by which it produces these effects. METHODS: A double blind, multicenter, randomized, controlled trial studied patients over age 50 years with hip or knee osteoarthritis (OA). All patients (n = 252) were treated with the medication (diclofenac + misoprostol). Patients randomized to the experimental group interacted with a computer program delivering information about their disease, the medication, its intended and side effects, appropriate utilization (distinguishing between appropriate versus inappropriate continuation and discontinuation of medication), patient involvement in treatment related decision making, and communication with service providers. In the control condition, another computer program presented generic information about OA. Data were collected at pre-test, post-test, and 8 week followup. RESULTS: Appropriate utilization of the medication occurred more frequently in the experimental than the control group (p<0.029). Compared to controls, the experimental group demonstrated significant improvements in knowledge, realistic expectations of drug benefits, perceived ease of adherence, and self-efficacy (all p<0.05). There was no difference between the groups with regard to illness intrusiveness, pain, or disability, but there was a greater improvement in stiffness in the experimental group (-0.63; 95% CI -0.81 to -0.45) compared to the control group (-0.39; 95% CI -0.53 to -0.25) at a level of p = 0.04. CONCLUSION: In conditions such as OA, where patient involvement in decision making is essential to the effectiveness of care, computer assisted education focussing on appropriate vs inappropriate continuation and discontinuation of medications has the potential to improve knowledge, increase self-efficacy, maintain realistic expectations, and facilitate adherence, resulting in more beneficial clinical outcomes.

Validation of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (QLQ-C30) as a measure of psychosocial function in breast cancer patients.

The European Organisation for Research and Treatment of Cancer (EORTC) quality of life questionnaire QLQ-C30 has been developed as a quantitative measure of health-related quality of life for use in clinical trials of cancer patients. Validity is an important measurement property of all scientific tests. This study contributes to the iterative process of validating the questionnaire by focusing on the psychosocial subscales of the QLQ-C30, using baseline data from 150 patients participating in a randomised trial of supportive group therapy for metastatic breast cancer. The results provide strong support for the discriminative validity of the global health/quality of life, role function and social function subscales of the QLQ-C30, in patients differing according to clinical criteria. The psychosocial focus of the trial enabled expansion of criteria used to form patient subgroups, beyond medical factors, and consequently support was demonstrated for the discriminative validity of the emotional and cognitive function subscales. The degree of support for these subscales was less substantial than for the other QLQ-C30 subscales as there were fewer relevant criteria. Convergence assessed by correlations with independent measures of psychosocial function provides strong support for the convergent validity of the emotional function, role function and global health/quality of life subscales of the QLQ-C30, and moderate support for the social function subscales. There was little opportunity for the cognitive function subscale to associate with conceptually analogous subscales. Further testing is recommended with more comprehensive and specific measures of cognitive status. In general, the psychosocial subscales of the QLQ-C30 appear to be measuring the concepts they are purported to measure.

Illness intrusiveness in individuals with panic disorder, obsessive-compulsive disorder, or social phobia.

To measure the extent to which anxiety disorders interfere with various domains of functioning, the Illness Intrusiveness Ratings Scale (IIRS) was completed by individuals with a DSM-IV principal diagnosis of panic disorder (PD; N = 35), obsessive-compulsive disorder (OCD; N = 51), or social phobia (SP; N = 49). Although the three groups did not differ on total IIRS scores, group differences did emerge for particular domains of functioning. Patients with OCD reported significantly more interference with respect to passive recreation (e.g., reading) than did SP patients and with respect to religious expression compared with both PD and SP patients. Patients with SP reported more impairment with respect to social relationships and self-expression/self-improvement compared with the other two groups. When compared with populations with a variety of other chronic illnesses, patients in the present study reported much higher levels of illness intrusiveness. The implications of these findings and future directions for research are discussed.

A comparison of the quality of life reported by elderly whites and elderly blacks on dialysis.

OBJECTIVE: To compare indicators of quality of life reported by elderly whites and elderly blacks on chronic dialysis. DESIGN: Survey of surviving patients from a previously identified prevalent cohort. SETTING: 58 dialysis facilities located throughout the state of Georgia. SUBJECTS: 46 whites (mean age = 72) and 85 blacks (mean age = 70) on chronic dialysis > or = 3.5 years. MAIN OUTCOME MEASURES: Number of days in bed during past 3 months; number of nights hospitalized during past 6 months; score summarizing limitations in functional status; 10 dialysis symptoms/complaints; 9 indicators of subjective well-being. RESULTS: Elderly whites, more than elderly blacks, complained of nausea, fatigue, and longer time to recover following a hemodialysis treatment. Whites also were more likely than blacks to perceive kidney failure/dialysis as intrusive for their health and for their diet, to report health dissatisfaction, and to report life dissatisfaction. CONCLUSION: Although blacks were more likely than whites to have diabetes as a primary diagnosis and blacks' educational level was lower than that of whites, all the statistically significant quality of life differences identified in this elderly cohort showed better quality of life among black patients than among white patients.

Psychosocial impact of illness intrusiveness moderated by self-concept and age in end-stage renal disease.

This study assesses whether a person's self-concept as a "chronic kidney patient" differentially moderates the psychosocial impact of illness intrusiveness--illness-induced lifestyle disruptions--across the life span. Renal transplant (n = 52) and maintenance dialysis patients (n = 49) completed the illness Intrusiveness Ratings Scale, a semantic-differential self-concept measure, and structured interviews measuring psychosocial well-being and emotional distress. Across ages, distress rose with increasing illness intrusiveness when self-concept was similar, but not dissimilar, to the chronic kidney patient stereotype. The relation between illness intrusiveness and psychosocial well-being differed significantly between younger and older respondents depending on whether they construed themselves as similar versus dissimilar to the chronic kidney patient. Although self-definition moderates the psychosocial impact of chronic disease, this varies across the life span and across affect states.

Quality of life and lifestyle disruption in euthymic bipolar disorder.

The objective was to assess the extent and pattern of illness intrusiveness, one measure of quality of life, in subjects with bipolar disorder (BD) and to determine whether specific illness variables had influenced the degree of intrusiveness experienced. To compare findings from BD subjects relative to published findings for subjects with chronic medical conditions. The study involved the administration of a self-report assessment tool to euthymic outpatients with BD attending a university based hospital clinic. Of the 155 eligible participants, 112 completed a standardized psychiatric interview (SADS-L) and 87 of these met study criteria for euthymia and were approached to participate in the study. Sixty-eight completed self-report measures were returned. The main outcome measure was the Illness Intrusiveness Rating Scale (IIRS) which was analysed along with a composite measure of life events. It resulted that individuals' with BD experience significant illness intrusiveness into a number of life domains even after controlling for negative life events. Factors such as type of BD, the presence of a depressive episode in the preceding year and current Hamilton depression rating scale score contributed to the total illness intrusiveness. The degree of total illness intrusiveness experienced by individuals with BD was similar to that of subjects with multiple sclerosis and greater than subjects with end stage renal disease and rheumatoid arthritis. It seems apparent that quality of life, as determined by illness intrusiveness, is compromised in subjects with BD even during periods of euthymia. BD is at least as intrusive as several chronic medical conditions. Those with a type II BD report greater impairment in all domains compared with type I. Future research should determine specific psychosocial interventions aimed at reducing the impact of BD.

Cross-cultural measurements of psychological well-being: the psychometric equivalence of Cantonese, Vietnamese, and Laotian translations of the Affect Balance Scale.

OBJECTIVES: This paper evaluates the cultural equivalence of Cantonese, Vietnamese, and Laotian translations of the Affect Balance Scale. METHODS: The scale was completed by 399 Vietnamese, 193 Laotian, 756 Cantonese, and 319 English speakers who were participants in the Clarke Institute-University of Toronto Refugee Resettlement Project (n = 1667). RESULTS: Confirmatory factor analyses indicated a good fit between the hypothesized two-factor model (separate factors for positive and negative affect) across the original English-language version and each of the Asian-language translations. Factorial invariance (numbers and patterns of factor loadings) was evident across all versions of the scale. No evidence of item bias was detected by mixed Language x Item analyses of variance. Acceptable reliability was observed; coefficient alphas ranged from .62 to .72 for positive affect and from .62 to .70 for negative affect items. CONCLUSIONS: These findings substantiate the cultural equivalence of the three translations of the scale for population health research. Important future research directions made possible by the availability of culturally equivalent instruments are discussed.