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The use of quality of life (QoL) questionnaires in clinical medicine must be based on instruments that are reliable and valid. The aim of this study was to describe the translation of the Inflammatory Bowel Disease Questionnaire (IBDQ) into Norwegian, its scaling assumptions and the psychometric properties of the translated questionnaire.All patients included were recruited from an ongoing epidemiological study started in 1990 (the IBSEN trial), based on the registration of undiagnosed cases of Crohn disease (CD) or ulcerative colitis (UC) in subjects permanently residing in the study area the year before registration. At the 5-year follow-up visit in the hospital, all patients between 18 and 75 years of age were invited to participate in this QoL study, and those willing were interviewed and asked to complete the two QoL questionnaires, IBDQ and SF-36, on two different occasions separated by 6 months. The IBDQ was tested for validity, reliability and responsiveness.In total, 497 patients (93%) completed the IBDQ questionnaire at visit 1, and 493 (92%) completed SF-36. The mean age was 43.3 years, 48% were female. We found that the Norwegian version of the IBDQ (N-IBDQ) consists of five underlying dimensions in contrast to the four dimensions previously reported. Psychometric testing of the N-IBDQ indicates that the questionnaire is valid, reliable, has a high degree of responsiveness and that the results are comparable to those reported from other groups, even though our findings are based on a different factorial structure than the original McMaster version.The N-IBDQ consists of five different dimensions in contrast to the four dimensions previously reported. Good item internal consistency, validity, reliability and responsiveness were demonstrated.

The objective of this study was to investigate the amount of social support received by female patients with rheumatoid arthritis (RA) compared to healthy controls. Two hundred and sixty-four patients and 61 healthy controls were assessed. Social support was assessed by the Social Support Questionnaire of Transactions (SSQT) measuring five different support types: Daily and problem-oriented emotional support, social companionship, and daily and problem-oriented instrumental support. Compared with healthy controls, RA patients reported significantly less daily emotional ( p = 0.024) and problem-oriented emotional support ( p = 0.024), as well as less social companionship ( p = 0.022) when network size and sociodemographic variables were controlled for. Furthermore, among older subjects (> 57 years) RA patients had a lower score on social companionship than controls. However, RA patients with few or no friends (< 4 friends) received more problem-oriented instrumental support than the controls.

Patients with psoriasis commonly report severe sensory skin symptoms, sleep disturbance, psychological distress and impaired health related quality of life (HRQoL). However, the complex associations among these factors are poorly investigated in this patient group.The purpose of this study was to investigate the association between skin pain or skin discomfort and HRQoL, and explore whether sleep disturbance and psychological distress were mediators of these associations.A total of 139 psoriasis patients from a university hospital setting participated in this exploratory, cross-sectional study. Data were obtained through interviews and questionnaires (Dermatology Life Quality Index, General Sleep Disturbance Scale, Illness Perception Questionnaire) and analysed using a series of multiple regression analyses. HRQoL was the dependent variable. Independent variables and assumed mediators were entered into the model in a predefined order.Skin pain, skin discomfort, sleep disturbance and psychological distress were significantly associated with HRQoL (all P0.05). Sleep disturbance was a partial mediator for the association between skin pain and HRQoL. No such mediation effect was found in terms of psychological distress. The total model explained 40% of the variance in HRQoL.In this study, skin pain and skin discomfort were significantly related to HRQoL when controlling for demographic and clinical characteristics. In addition, sleep disturbance mediated the association between skin pain and HRQoL. An understanding of the complex association among physiological and psychological factors, and HRQoL is clinically important in order to provide proper treatment and care of patients with psoriasis.

The study aimed to evaluate long-term health-related quality of life (HRQOL) and functional outcome in patients who had undergone restorative proctocolectomy with ileo-anal anastomosis (IPAA) for ulcerative colitis and familial adenomatous polyposis.A total of 156 patients who underwent IPAA during the period 1984-2003 and who still had an intact pouch were included. The HRQOL score was compared with 4152 individuals from the general Norwegian population using the SF-36 questionnaire, and function was evaluated using the Wexner Continence Grading Scale.One hundred and ten (71%) patients answered the questionnaires, 60 (55%) of whom were men. All except five patients had ulcerative colitis. Median (range) age at interview was 47 (19-66) years, and time after surgery was 12 (2-22) years. The IPAA patients scored slightly, but significantly, lower in four of six SF-36 health domains than the control subjects, adjusted for age and gender. Multiple regression analysis showed frequency of nocturnal defaecation, faecal incontinence and urgency to be independent negative prognostic factors of quality of life. Frequency of defaecation was a median of 7 (3-12) bowel movements during the day and 2 (0-6) at night. The majority had some degree of faecal incontinence, median (range) Wexner score of 8 (0-17), and 40% reported urgency of defaecation necessitating alterations in lifestyle.Patients with IPAA reported slightly lower HRQOL rates than the general population and had an inferior functional outcome.

Geographical variation in two related seabird species, the razorbill (Alca torda) and common guillemot (Uria aalge), was investigated using sequence analysis of mitochondrial DNA (mtDNA) control regions. We determined the nucleotide sequence of the variable 5' segment of the control region in razorbills and common guillemots from breeding colonies across the Atlantic Ocean. The ecology and life history characteristics of razorbill and common guillemot are in many respects similar. They are both considered highly philopatric and have largely overlapping distributions in temperate and subarctic regions of the North Atlantic, yet the species were found to differ widely in the extent and spatial distribution of mtDNA variation. Moreover, the differences in genetic differentiation and diversity were in the opposite direction to that expected from a consideration of traditional classifications and current population sizes. Indices of genetic diversity were highest in razorbill and varied among colonies, as did genotype frequencies, suggestive of restrictions to gene flow. The distribution of genetic variation suggests that razorbills originated from a refugial population in the south-western Atlantic Ocean through sequential founder events and subsequent expansion in the east and north. In common guillemots, genetic diversity was low and there was a lack of geographical structure, consistent with a recent population bottleneck, expansion and gene flow. We suggest that the reduced level of genetic diversity and differentiation in the common guillemot is caused by an inherent propensity for repeated population bottlenecks and concomitantly unstable population structure related to their specialized feeding ecology.

New predictive genetic tests are introduced in clinical work, and this means new tasks for the physician.Every sixth member of the Norwegian Medical Association practising as a general practitioner, neurologist or psychiatrist (N = 732), were asked to answer a mailed, anonymous questionnaire about their attitudes to the new tasks.We obtained 451 (62%) answers. There were no significant differences between the various groups in the profession. So far, 54% had no patient in their practice who had taken a predictive genetic test. About two-thirds answered that the geneticist should inform about what is known about the consequences after a test result has been given. The general practitioner wants to do the follow-up. 97% of physicians think that the test result could lead to increased distress in various ways for the tested person or his/her family. Half of the physicians would advise taking a prenatal test if one of the parents had a known risk of an inherited disease and the foetus was at risk. Only 22% are in favour of abortion if the foetus has the gene in question.The physicians (93%) do not think they have sufficient knowledge about predictive genetic tests to handle the information procedure on their own. They want courses in medical genetics, concise and relevant information from geneticists, and the possibility of consulting with specialists.

The aim of this study was to examine the quality of life (QoL) profiles of patients with early rheumatoid arthritis (RA) and to relate these to disease and impairment variables as indicated, respectively, by erythrocyte sedimentation rate (ESR) and by tender joint count (Ritchie Articular Index), fatigue, and pain.The present study uses part of the European Research on Incapacitating Disease and Social Support data of 573 patients with recently diagnosed RA (268 from the Netherlands, 216 from Norway, and 89 from France). A series of clinical and psychosocial data were collected on 4 (the Netherlands, France) and 3 (Norway) occasions, with 1-year intervals separating the waves of data collection.Of the disease activity (ESR) and impairment variables (tender joint count, fatigue, pain), fatigue was identified as the consequence of disease that differentiated best on a series of QoL aspects such as disability, psychological well-being, social support, and "overall evaluation of health." Next came pain and tender joint count, and ESR showed by far the least differentiating ability. A principal-component analysis on the QoL measures used in this study yielded one general factor measuring "overall QoL." After rotation, two separate factors were encountered, one referring to the physical domain and the other to the psychological and social domains of QoL. Again, the QoL of RA patients experiencing much fatigue appeared to decline the most.Because of the highly variable nature of RA, impairments, activities of daily living (ADL) and instrumental ADL restrictions, and psychosocial distress can vary erratically. In particular, "fatigue" as measured over a period of 2 to 3 years distinguished best among RA patients as shown by their QoL profiles. Although the physical domain was most affected, the significant effect of RA on the psychosocial domain should not be underestimated.

Evolutionary history of Muscicapidae flycatchers is inferred from nuclear and mitochondrial DNA (mtDNA) sequence comparisons and population genetic analysis of nuclear and mtDNA markers. Phylogenetic reconstruction based on sequences from the two genomes yielded similar trees with respect to the order at which the species split off. However, the genetic distances fitted a nonlinear, polynomial model reflecting diminishing divergence rate of the mtDNA sequences compared to the nuclear DNA sequences. This could be explained by Haldane's rule because genetic isolation might evolve more rapidly on the mitochondrial rather than the nuclear genome in birds. This is because hybrid sterility of the heterogametic sex (females) would predate that of the homogametic sex (males), leading to sex biased introgression of nuclear genes. Analyses of present hybrid zones of pied (Ficedula hypoleuca) and collared flycatchers (F. albicollis) may indicate a slight sexual bias in rate of introgression, but the introgression rates were too low to allow proper statistical analyses. It is suggested, however, that the observed deviation from linearity can be explained by a more rapid mutational saturation of the mtDNA sequences than of the nuclear DNA sequences, as supported by analyses of third codon position transversions at two protein coding mtDNA genes. A phylogeographic scenario for the black and white flycatcher species is suggested based on interpretation of the genetic data obtained. Four species appear to have diverged from a common ancestor relatively simultaneously during the Pleistocene. After the last glaciation period, pied and collared flycatchers expanded their breeding ranges and eventually came into secondary contact in Central and Eastern Europe and on the Baltic Isles.

To delineate compliance with drug therapy in rheumatoid arthritis patients, determine specific characteristics of compliant and noncompliant patients, and look for changes in compliance over time.A prospective European cohort study (EURIDISS) recruited 556 patients in four countries over three years. Compliance with drug dosages and dosing times was evaluated yearly using a questionnaire.Of the 556 patients, 429 (77.2%) were on drug therapy at all three evaluation time points. Use of steroids, nonsteroidal anti-inflammatory drugs, and second-line drugs varied significantly across countries. The compliance behavior was stable over time in 59.5% of them (35.7% of patients were consistently compliant and 23.8% consistently noncompliant); it was independent of disease duration and from the clinical features of the disease. Older patients and women were more likely to be compliant (odds ratios, 2.5 and 2, respectively).Compliance with drug therapy can be measured using two simple questions. Compliance is more closely dependent on individual behavior than on responses to specific features of rheumatoid arthritis.

Patient compliance is considered necessary for the success of drug treatment in chronic diseases. We document compliance with drug treatment and the factors affecting it in a cohort of patients with rheumatoid arthritis (RA).A prospective cohort study of 556 patients with RA followed for 3 years in 4 counties: Oslo, Norway; Groningen, The Netherlands; and Nancy and Reims, France. Compliance to treatment was assessed annually by interview in terms of adherence to the dose and timing of the prescribed drug regimen.Of the 556 subjects, 429 (77.2%) were taking medication for RA throughout the observation period. Consistent behavior was recorded in 59.5% of cases: 35.7% were consistently compliant, and 23.8% consistently noncompliant. Factors significantly associated with good compliance were older age (p = 0.00), female sex (p = 0.03), decreased disability (p = 0.04), very satisfactory contacts with health care professionals (p = 0.03), and more personal knowledge about the disease and its treatment (p = 0.03).This longitudinal study identified compliance behavior as consistent over time in 60% of patients, determined by quality of contact with professionals and the amount of patient information available.

The aim of the present study was to adapt the Jalowiec Coping Scale (JCS) to accommodate adult patients with psoriasis. The sample comprised 334 patients who were treated consecutively at three dermatology departments in the eastern Norway. A total number of 273 hospitalised patients (20%) and out-patients (80%) completed the questionnaire, yielding a response rate of 82%. The study assessed the reliability and the face, content and construct validity of the Norwegian version of the JCS. In addition, researchers investigated the most frequently used/effective coping strategies, the relationships between demographic/clinical variables, self-reported physical symptoms and the use of coping strategies. The results (correlational coefficients and interitem alpha s) indicated that there was an overlap in substantive content among the original JCS subscales, due either to measurement error (bias or response style) and/or because the patients in the present study were in a demanding situation in relation to their disease, which may have activated a variety of coping strategies. A factor analysis resulted in a three-factor solution (confrontive problem-solving, normalising/optimistic and combined emotive) with satisfactory internal consistency. This factor solution comprised 31 items with an explained variance of 37% of the total pool of items. The most frequently used and effective coping strategies could be labelled as emotion-focused (optimistic/maintain control). Significant correlations were found between age, hospital setting, self-reported physical symptoms and different coping subscales. However, further studies are needed to assess the validity and reliability of the JCS among different population groups in Norway.

The aim of the present study was to investigate the relationship between coping dimensions and overall quality of life, disability and health status in patients' with psoriasis. Psoriasis is one of several chronic diseases which requires self-management in order to ensure an enhanced quality of life. The sample comprised 334 patients who were treated consecutively at three dermatology departments in eastern Norway. A total number of 273 patients completed the questionnaire, yielding a response rate of 82% (20% in-patients and 80% out-patients). The following questionnaires were used: The Jalowiec Coping Scale, the Psoriasis Disability Index, the Quality of Life Scale, and the SF-36. Results showed that patients who used combined emotive coping strategies reported more disability, poorer mental health and worse overall quality of life. Furthermore, patients who more frequently used normalising/optimistic coping reported higher levels of mental health. However, the variance explained by coping effort was low to moderate. Coping explained the variance in mental health and overall quality of life to a greater extent than that in physical health. Knowledge about the relationships between coping and quality of life dimensions is important with regard to the establishment and implementation of appropriate psychosocial interventions for patients with psoriasis.

There is a strong need for health care programmes to promote functioning and quality of life in patients suffering from psoriasis. The aim of the present study is to highlight the relationships between demographic and clinical variables and disease-specific disability, health status, the perception of living with a chronic disease and the overall quality of life in patients suffering from psoriasis. A further aim is to examine the extent to which the effects of demographic and clinical variables on mental health and the overall quality of life are mediated by disability, physical health and the perception of living with psoriasis. The sample examined in this study comprised 334 patients (20% in-patients and 80% out-patients) who were treated consecutively at three dermatology departments in eastern Norway. A total of 282 patients completed the testing procedures, yielding a response rate of 85%. The following questionnaires were used: The Psoriasis Disability Index, the Sf-36 and the Quality of Life Scale. Correlation and multiple linear regression analyses were performed to address the core issue. Results show that demographic and clinical variables combine to explain variance in health status, the perception of living with psoriasis and overall quality of life. While most of the variance is explained by the clinical variables, the disease-specific disability variable seems to be an important mediating factor.

To assess the reliability, validity, and sensitivity to change of the Norwegian version of the childhood Health Assessment Questionnaire (CHAQ) and to examine the relationship between disability, disease severity, and psychosocial factors in patients with early juvenile rheumatoid arthritis (JRA).Physical functioning was assessed by the CHAQ in 109 patients (median age 6.6 years, range 1.0-16.6) with JRA and a median of 4 months' (range 2-23) disease duration. Eighty-three patients were reassessed after a median of 6 months (range 3-21). Psychosocial functioning was assessed by the Child Behavior Checklist (n=39).The internal consistency of the CHAQ was good (Cronbach's alpha=0.83). The test-retest and parent-patient correlations were high [intraclass correlation coefficients 0.85 (n=18) and 0.75 (n=20), respectively, p0.001]. The CHAQ correlated moderately with number of tender, swollen and mobility restricted joints, morning stiffness, C-reactive protein, pain, and patients' and physicians' global assessments [correlation coefficients (r) ranging from 0.55 to 0.30, p0.01], but weakly with erythrocyte sedimentation rate (r=0.17, NS). The CHAQ also correlated with low levels of social competence (r=-0.49, p0.05) and high levels of internalizing behavior problems in the patients (r=0.43, p0.01) and low education levels of the mothers (r=-0.31, p0.01). Pain (beta 0.45, p0.001), number of swollen joints (beta 0.31, p0.001), and internalizing behavior problems (beta 0.45, p0.01) were predictors of disability. The median CHAQ changed from 0.25 to 0.00 (p0.05) in the 41 patients who improved, from 0.31 to 0.85 (p0.05) in the 18 patients whose condition was worse, and from 0.50 to 0.59 (NS) in the 24 patients whose condition was unchanged after 6 months. The effect size of the change was small (0.28) in those who improved and moderate (0.54) in those who became worse.The Norwegian version of the CHAQ is a reliable and valid instrument for measuring disability in children with early JRA. Pain, joint inflammation, and psychosocial factors are the most important correlates of disability and the CHAQ is sensitive to clinical change.

The objective of our study was to estimate the impact of early rheumatoid arthritis (RA) on psychological distress by comparing patients with RA and matched controls. A sample of 238 patients (age 20-70 years, mean age 52 yrs) with RA of 0 to 4 years duration (mean 2.2 yrs), was compared to 116 control persons matched to the patients with respect to sex, age, and geographic area. Data were collected through self-report questionnaires. Patients with RA rated their mental health significantly lower than the controls. Symptoms of anxiety and depression were significantly higher among arthritic patients. Twenty% of the patients had scores indicating possible psychiatric caseness compared to 6% of the controls. However, controlling for pain, disability, and fatigue, there was no significant difference in psychological distress between the patients and the controls. RA appears to have a strong impact on mental distress even early in the disease. The present study demonstrates that pain, disability, and fatigue are strongly related to the increased levels of psychological distress in RA.

Self-reported pain is one of the core endpoint measures in RA. The objective of this cross sectional study of 238 patients with rheumatoid arthritis (RA) was to examine the relationship between self-reported pain intensity, sociodemographic variables, anxiety, and depressive symptoms.A weighted sum score of pain intensity was constructed by combining a visual analog pain scale with items from the Arthritis Impact Measurement Scales (AIMS) and the Nottingham Health Profile. Symptoms of anxiety and depression were measured by subscales ofMultiple regression analyses showed no significant effects of age, sex, income, or level of education on self-reported pain intensity, whereas there was a significant association between the pain index and anxiety and depressive symptoms. The correlation between the pain index and anxiety, and the pain index and depression, was 0.46 for both. Controlling for sociodemographic variables, the Ritchie index, erythrocyte sedimentation rate, and C-reactive protein, the standardized regression coefficients were 0.33 and 0.31 of the pain index on the AIMS anxiety and depression subscale, respectively. Furthermore, the results indicate that the effect of inflammation on mental distress is mediated by pain.Self-reported pain in RA is not significantly influenced by sex, age, level of education, or income. Even when controlling for disease activity, there was a considerable correlation between self-reported pain and mental distress. Furthermore, our study lends support to the hypothesis that mental distress is mainly secondary to pain rather than vice versa.

The authors report results from medical screening for hypertension carried out on the entire adult population (aged greater than 20 years) of the county of Nord-Trøndelag, Norway. Previously undiagnosed hypertensives in need of medical treatment (n = 173), false positives (n = 233) and patients in need of continued blood pressure monitoring (n = 474) were followed up 10 to 36 months after the screening. This group was compared with a random population sample of known hypertensives (n = 206), patients previously treated for hypertension (n = 118) and normotensives (n = 2,326). No significant differences in changes in quality of life (subjective well-being) were observed between the two groups from screening to follow-up. However, negative events in life and chronic stresses other than the fact of becoming sick induced a deterioration of quality of life. Positive events induced an improvement in quality of life.

Several studies have shown higher rates of absenteeism from work among hypertensives who are aware of their condition than among hypertensives who have no such knowledge or among normotensives. This seems to be the result of labelling rather than of the hypertension itself. The results of studies of the effect of labelling and awareness on quality of life are ambiguous. Follow-up by health professionals in terms of reassurance and support often seems to alleviate adverse psychosocial effects of labelling.

Systolic (SBP) and diastolic (DBP) blood pressures were measured in a health screening of the adult population in Nord-Trøndelag, Norway. Correlations were computed for 23,936 pairs of spouses, 43,586 pairs of parent and offspring, 19,151 pairs of siblings, 1,251 pairs of grandparents-grandchildren, 1,146 pairs of biological uncles/aunts-nephews/nieces (avuncular), 801 non-biological avuncular pairs, 169 pairs of same-sex twins, and smaller groups of other types of relationships. Spouse correlations of 0.08 and 0.09 were approximately constant or slightly decreasing with marital duration. The correlation values for SBP and DBP were approximately 0.16 for parents-offspring, 0.19 to 0.23 for same-sex siblings with similar values for DZ twins, 0.19 and 0.16 for opposite-sex siblings, 0.52 and 0.43 for MZ twins, and close to zero for most of the second-order relationships. Genetic additive variance was estimated at 0.29 and genetic dominance variance at 0.18 with the best model for SBP. The corresponding estimates from the best models for DBP were 0.29 or lower and 0.22 or lower, the sum not exceeding 0.35. There was evidence of a moderate effect of environmental factors shared by same-sex siblings and twins (for DBP), but no cultural transmission, and whether or not adult relatives live together does not affect familial resemblance for BP. The data did not permit a very precise resolution of the relative magnitude of genetic dominance and sibling effects. The correlation structure did not show sex-specific genetic effects.