[Loneliness and self-management abilities in the visually impaired elderly]. / Eenzaamheid en zelfmanagementvaardigheden bij visueel beperkte ouderen.

OBJECTIVES: To describe the degree of loneliness among the visually impaired elderly and to make a comparison with a matched reference group of the normally sighted elderly. In addition, we examined self-management abilities (SMAs) as determinants of loneliness among the visually impaired elderly. METHODS: In a cross-sectional study, 173 visually impaired elderly persons completed telephone interviews. Loneliness and SMAs were assessed with the Loneliness Scale of De Jong Gierveld and the SMAS-30, respectively. RESULTS: The prevalence of loneliness among the visually impaired elderly was higher compared to the reference group (50% vs 29%; p < .001). Multivariate hierarchical regression analysis showed that the SMA self-efficacy, partner status, and self-esteem were determinants of loneliness. Severity and duration of visual impairment had no effect on loneliness. DISCUSSION: The relationship between SMAs (i.e., self-efficacy) and loneliness is promising, since SMAs can be learned through training. Consequently, self-management training may reduce feelings of loneliness. An adapted version of this paper was published in Journal of Aging and Health, doi: 10.1177/0898264311399758.

Are there more than cross-sectional relationships of social support and support networks with functional limitations and psychological distress in early rheumatoid arthritis? the European Research on Incapacitating Diseases and Social Support Longitudinal Study.

OBJECTIVE: To investigate whether greater social support and support network are cross-sectionally associated with less functional limitations and psychological distress in patients with early rheumatoid arthritis (RA); whether this association is constant over time; and whether increases in social support or support network are associated with less functional limitations and psychological distress. METHODS: Subjects were from the European Research on Incapacitating Diseases and Social Support cohort and had early RA. Social support, support network, functional limitations (Health Assessment Questionnaire), and psychological distress (General Health Questionnaire) were assessed annually. Variance and covariance analyses with repeated measures were performed. RESULTS: A total of 542 subjects were assessed for 3 years. On average, patients with a greater amount of specific social support or a stronger specific support network experienced less functional limitation and less psychological distress. Changes in a given subject's functional limitations and psychological distress did not depend on his or her baseline social support or support network. Neither social support nor support network change over time. CONCLUSION: There may be a cross-sectional link between specific social support or support network and functional limitations and psychological distress, but no longitudinal association could be evidenced.

The relative contribution of domains of quality of life to overall quality of life for different chronic diseases.

This study examined the contribution of the quality of life (QoL) domains physical, social and psychological functioning to the explanation of overall QoL. Various disorders may differentially affect QoL domains due to disease-specific factors and, consequently, the relationship between QoL domains and overall QoL may vary between diseases. We therefore studied this relationship for several diseases as well as the differential impact of these diseases on QoL. The present study had a cross-sectional design. We selected patients (aged 57 years and older) with one of the following eight chronic medical conditions: lung disorder, heart condition, hypertension, diabetes mellitus, back problems, rheumatoid arthritis, migraine, or dermatological disorders. The total group of respondents included 1457 patients and 1851 healthy subjects. Regression analyses showed that the domain of psychological functioning contributed to overall QoL for all disorders, whereas physical and social functioning contributed to overall QoL for some disorders. Differences were found between most patient groups and healthy subjects with respect to physical functioning; with respect to social and psychological functioning some groups differed from the healthy group. Explanations for the findings and implications for clinical practice are discussed.

Social functioning, psychological functioning, and quality of life in epilepsy.

PURPOSE: Part of our research intended to explain "Quality of Life" (QoL) differences between people with epilepsy. To this end, a series of already existing generic and disease-specific health status measures were used. In this study, they were considered as determinants of people's QoL, whereas QoL itself was conceived as a general "value judgment" about one's life. METHODS: From the records of four outpatient clinics, 210 persons with epilepsy were randomly selected. During their visit to the outpatient clinic, they completed a questionnaire assessing, among other things, health perceptions and social and psychological functioning. Additional information about their medical and psychosocial status was gathered from the patient files. Data were analysed by using a hierarchical regression analysis. RESULTS: In decreasing order of importance, "psychological distress," "loneliness," "adjustment and coping," and "stigma perception" appeared to contribute most significantly to the outcome QoL as judged by the patients themselves, regardless of their physical status. In the final model, none of the clinical variables (onset, seizure frequency, side effects of antiepileptic drugs) contributed significantly anymore to the patients' "quality-of-life judgement." Apparently the effect of other variables such as seizure frequency and health perceptions, medication and side effects, life fulfillment, self-esteem, and mastery is mediated by these variables. CONCLUSIONS: Because all of the variance in QoL of the patients was explained by the psychosocial variables included in this study, health professionals should be aware of the significance of the psychosocial functioning of the patients and the role it plays in the achievement of a good QoL. Both informal and professional support may be an adjunct to conventional treatment. In future research, this issue should be given high priority.

Quality of life profiles in the first years of rheumatoid arthritis: results from the EURIDISS longitudinal study.

OBJECTIVE: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

Drug consumption in the first years of rheumatoid arthritis in France, The Netherlands, and Norway. A longitudinal study in the early nineties.

OBJECTIVE: To analyse drug consumption in the first years of rheumatoid arthritis (RA) in France, the Netherlands, and Norway, in a longitudinal study between 1991 and 1993. PATIENTS AND METHODS: The EURIDISS cohort followed up over three years included 695 RA subjects with less than 5 years disease duration. Clinical and biological parameters, drug consumption according to ATC classification, and use of local treatment were recorded. RESULTS: In the Netherlands consumption of second-line treatment occurred early on, and remained constant over time. In France, it was consumed by half of the subjects and decreased during follow-up (p<0.001). In Norway, 50% of the subjects were on second-line treatment at the outset. NSAIDs rather than corticoids were the most widely consumed. Patients underwent frequently local treatments with decrease frequency of infiltrations over time (p<0.001). CONCLUSION: Second-line treatments were used in the first years of disease development, following varying sequences in the different countries.

Health care utilization by people with multiple sclerosis in The Netherlands: results of two separate studies.

PURPOSE: For chronically ill persons it is assumed that they make heavy demands on health care services. In the literature one hardly finds any publications to substantiate or refute this assumption. The main purpose of our study is to describe the health care utilization of people with multiple sclerosis (MS) in the Netherlands and its relationships with severity and duration of the disease. METHODS: Two different samples of persons with MS were used. In the first sample (University Hospital Groningen) severity of MS was based on medical judgement, while in the second sample (Dutch Multiple Sclerosis Society) severity was self-reported. In both samples, use of health care facilities was assessed with a mail questionnaire. RESULTS: The methods for determining severity resulted in different distributions for severity of MS. However, the results were quite similar with respect to health care utilization. It appeared that the severity of MS was related to the number of professional caretakers MS-patients had contact with during one year. Duration of MS seemed not to be related to the number of caretakers. Only for specific caretakers, most notably GP, physiotherapist, home help and ergotherapist, the contact frequency increased with severity of MS. No such relationship was found between the frequency of contact with the neurologist and severity of MS. CONCLUSIONS: People with MS do not make a heavy demand on health care facilities in general but only on certain health care provisions. This is in contrast with the general notion that all chronically ill make a heavy demand on health care facilities in general.

Compliance with drug therapy in rheumatoid arthritis. A longitudinal European study.

OBJECTIVE: 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. PATIENTS AND METHODS: 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. RESULTS: 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). CONCLUSION: 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.

Compliance to drug treatment of patients with rheumatoid arthritis: a 3 year longitudinal study.

OBJECTIVE: 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). METHODS: 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. RESULTS: 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). CONCLUSION: 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.

Life events and disability in rheumatoid arthritis: a European cohort.

The objective was to study the relationship between life events (LE) and the clinical status of patients suffering from recently diagnosed rheumatoid arthritis (RA) in a 2 yr follow-up. As part of a multicentre European cohort study, 370 French and Dutch patients were questioned three times at 1 yr intervals about LE which had occurred in the previous year. Three criteria were used to quantify the degree of disease activity (Ritchie's index), the level of functional disability [Health Assessment Questionnaire (HAQ)] and perceived health [Overall Evaluation of Health (OEH)]. Total LE and desirable LE showed a weak negative correlation with the HAQ scores. On the other hand, death-related LE did not seem to modify patient status. The higher the number of health-associated LE, the greater the deterioration in HAQ and OEH scores. The results indicate that LE do not affect the course of early RA in a spectacular manner.

An international study on measuring social support: interactions and satisfaction.

Recently, a new instrument was developed to measure social support. It consists of two parts; the Social Support Questionnaire for Transactions (SSQT) and the Social Support Questionnaire for Satisfaction with the supportive transactions (SSQS). The SSQT measures the number of supportive interactions and has proved to have good psychometric properties. From the taxonomy that was used for the present study, it results that social support in general consists of two aspects. There are, on the one hand, actual supportive transactions and, on the other hand, the perception of being supported or the satisfaction with the social support provided. In the present study, two research questions were addressed. The first concerned the psychometric properties of the SSQS, measuring the individual's satisfaction with the supportive interactions provided. Secondly, the relative contribution of both supportive interactions (the SSQT) and the satisfaction with the support provided (the SSQS) were assessed, in explaining the level of health related quality of life outcome. The data of 744 rheumatoid arthritis (RA) patients from four different countries (116 French, 238 Norwegian, 98 Swedish and 292 Dutch patients) were used in the present study. At the entry of the study, all patients fulfilled four out of seven American Rheumatism Association (ARA) criteria and had a disease duration of 4 years or less. The results of the study indicate that the SSQS has good psychometric properties across countries. Cronbach's alpha for the emotional support scales was 0.80 or more, and for the instrumental support subscales around 0.60. The standardized regression coefficients demonstrated that, compared to supportive interactions, support satisfaction was more relevant in explaining health related quality of life measures, although it is recommended that the SSQT and SSQS be used to complement each other.

Correlates of functional disability in early rheumatoid arthritis: a cross-sectional study of 706 patients in four European countries.

In this cross-sectional study of 706 European patients with rheumatoid arthritis (RA) of < or = 4 yr duration, we examined possible correlates of functional disability assessed by the Health Assessment Questionnaire. First, we examined a subsample of 237 Norwegian patients. The Ritchie index, sex, age, erythrocyte sedimentation rate (ESR) and disease duration correlated significantly with disability, whereas serum rheumatoid factor, hand X-ray changes and educational level did not. Subsequently, we cross-validated these findings in a similar sample of 469 French, Dutch and Northern Irish patients. The results supported the Ritchie index, sex, ESR and disease duration as significant correlates of disability, whereas rheumatoid factor, age and education were not significantly correlated with disability. The correlation between X-ray changes and disability could not be cross-validated. The main findings of this study are that female sex correlates significantly with disability even early in the course of RA, whereas the rheumatoid factor does not.

The assessment of functional status in rheumatoid arthritis: a cross cultural, longitudinal comparison of the Health Assessment Questionnaire and the Groningen Activity Restriction Scale.

OBJECTIVE: To compare a disease specific measure of functional status, the Health Assessment Questionnaire (HAQ) with a generic measure of functional status, the Groningen Activity Restriction Scale (GARS) in a cross cultural and longitudinal setting. Besides the comparison of psychometric properties, sex differences were also studied. METHODS: In a sample of 634 patients with rheumatoid arthritis (RA) (290 from The Netherlands, 116 from France, 228 from Norway), the psychometric properties (Cronbach's alpha and rho) of the GARS and the HAQ were compared among countries. The sensitivity for change between T1 and T2 was tested by means of the standardized response mean for a one year followup; furthermore, the relative efficiency of both instruments was computed. A t test was used to trace sex differences. RESULTS: The psychometric properties of both the HAQ and the GARS were very good. Both form unidimensional scales of hierarchically ordered items; alpha and rho are > 0.91 for both instruments. For patients who improved between T1 and T2, measured by the Ritchie Articular Index, the standardized response mean of the HAQ and the GARS were moderate, whereas for patients who worsened, the standardized response means were small. The results based on the relative efficiency were ambiguous. Furthermore, the mean score for women on the HAQ was 0.25 higher in contrast to scores for men. The GARS did not yield different scores for women and men. CONCLUSION: The internal consistency of the GARS and the HAQ are comparable. The HAQ has yielded different results for women and men. Therefore, when the HAQ is used, sex differences should be taken into account. With respect to sensitivity to change, the GARS and the HAQ obtained much better results for patients who improved in contrast to patients who worsened. The GARS was found to be more sensitive to change for patients who improved.

Work disability in early rheumatoid arthritis.

OBJECTIVE: To assess the impact of early rheumatoid arthritis (RA) on work status. METHODS: The employment status of 119 patients who had jobs before the onset of RA was examined. Patients with work disability were compared with those without, for several disease characteristics, therapeutic regimen, and educational level and age. RESULTS: Sixty two percent of the patients, particularly manual workers, reported some kind of work disability (7% worked less, 13% were on sick leave, and 42% had quit their jobs). Forty five patients (38%) stated that they were working without any restrictions; however, only 12 of this latter group (10% of the total group) had not encountered any changes at all within their jobs. The patients who reported work disability had a lower level of education and scored higher for several disease characteristics (erythrocyte sedimentation rate (ESR), joint tenderness, Health Assessment Questionnaire (HAQ), and Groningen Activity Restriction Scale) and were provided with more medication compared with patients without work disability, though only the educational level, disease duration, HAQ and ESR contributed significantly to work disability in logistic regression analysis. CONCLUSION: Even at an early stage, RA has a considerable impact on work status. This study indicates that work disability is dependent on disease characteristics and on the educational level of the patient.

The measurement of social support in the 'European Research on Incapacitating Diseases and Social Support': the development of the Social Support Questionnaire for Transactions (SSQT).

Social support is supposed to have a beneficial effect on the health and wellbeing of people. It is a central concept in the 'EUropean Research on Incapacitating DIseases and Social Support' (EURIDISS). In general, two main distinctions concerning social support are made in the literature, providing four basic dimensions or types of social support: a social-emotional vs an instrumental type of social support, and a 'crisis' or 'problem-oriented' vs 'everyday' or 'daily' type of social support. Based on these types of social support, a series of items were formulated to measure actual supportive interactions or exchanges of resources. The items were spread over five scales. The social-emotional type of social support comprised three scales: daily emotional support; problem-oriented emotional support; and social companionship, while the instrumental type of social support consisted of two scales: the daily instrumental support and the problem-oriented instrumental support. Together, these items and scales constitute the so-called 'Social Support Questionnaire for Transactions' (SSQT). The main objective of this paper is to investigate whether one and the same instrument, i.e. the SSQT, allows for meaningful comparisons between patients with rheumatoid arthritis from different countries. More specifically, the dimensionality and invariance of the dimensions across countries of the SSQT are explored. To this end, patients from four different European countries (France, Norway, The Netherlands and Sweden) were asked to fill in the SSQT. The analysis of the data using principal component analysis (PCA) and simultaneous component analysis (SCA), did yield the intended scales, although the internal consistency of one of them, the daily instrumental support scale, is questionable.(ABSTRACT TRUNCATED AT 250 WORDS)

Medical, physical and psychological status related to early rheumatoid arthritis.

As part of an international European research project, a longitudinal study was started by the end of 1990 in the northern part of The Netherlands. The study concentrated on recently diagnosed RA patients (N = 292), i.e., incident cases up to four years. According to the duration of the disease, five groups of patients had been formed. The early influence of rheumatoid arthritis on medical parameters, on functional status, on physical condition and on psychological well-being was evaluated. From the results, an overall statistically significant pattern related to the duration of the disease could not be distinguished. However, patients recently diagnosed did face activity restrictions, a decline in physical condition and social functioning. On medical parameters this deterioration is less profound. Furthermore, across and within the five patient groups, it seems that males and females respond differently to the influence of early RA. Based on cross-sectional data from the five onset cohorts, the present findings do not significantly suggest a steady worsening in medical, physical and psychological condition.

The Groningen Activity Restriction Scale for measuring disability: its utility in international comparisons.

OBJECTIVES: The Groningen Activity Restriction Scale (GARS) is a non-disease-specific instrument to measure disability in activities of daily living (ADL) and instrumental activities of daily living (IADL). It was developed in studies of Dutch samples consisting of elderly or chronically ill people. The psychometric properties of the GARS demonstrated in these studies were highly satisfactory. This paper addresses the psychometric properties of the GARS across countries. METHODS: Data of 623 patients with recently diagnosed rheumatoid arthritis from four European countries were analyzed by means of a principal components analysis and a Mokken scale analysis for polychotomous items. RESULTS: The results of the analyses were highly satisfactory: there was one strong and reliable general factor representing one underlying dimension of disability in ADL and IADL, and there was a clear hierarchical ordering of the items included in the GARS. The validity of the GARS was strongly suggested by the pattern of associations of the GARS with age, sex, and other existing health status measures. CONCLUSIONS: The psychometric characteristics of the GARS, which measures disability in ADL and IADL simultaneously, make this instrument very useful for comparative research across countries.

Functional disability in early rheumatoid arthritis: description and risk factors.

OBJECTIVE: To provide a description and identify risk factors for functional disability in early rheumatoid arthritis (RA). METHODS: A cohort of 337 patients with early RA with disease duration under 5 years was constituted in 2 areas in France and The Netherlands. Examination included the Ritchie index, the presence of nodes and other extraarticular manifestations, and the erythrocyte sedimentation rate (ESR). The Health Assessment Questionnaire, adapted and validated in the French and Dutch languages, was used to assess functional disability. RESULTS: The results allowed for the cross sectional description of a marked early functional disability, with a score of 1 (adjusted for disease activity variables) from the first year of the disease. Functional disability was increasing nonlinearly with the disease duration in a quadratic model. Disease activity variables, namely ESR and Ritchie index, were identified as other important components of functional disability. CONCLUSION: Consequences for the early management of RA are underlined.

A study of the unidimensionality and cumulativeness of the MOS Short-form General Health Survey.

The unidimensionality and cumulativeness of the subscales Health Perceptions, Mental Health, Physical Pain, and Social Functioning of the MOS Short-form General Health Survey were investigated using the Mokken Scale Analysis for Polychotomous Items (MSP). From the analyses, two unidimensional, cumulative subscales appeared, Health Perceptions including the item on Social Functioning, and Mental Health. Both subscales met the requirements of the Mokken model, with the first scale being a 'moderately strong' hierarchical scale (H = 0.49, rho = 0.89) and the second a 'weak' hierarchical scale (H = 0.38, rho = 0.85).

Social support, social disability, and psychological well-being in rheumatoid arthritis.

PURPOSE: Rheumatoid arthritis (RA) is a disease that may lead to social disability. As a consequence, the psychological well-being of RA patients can be strained. Social support is a possible moderator of the relation between social disability and psychological well-being. The focus of the present study is on the main effect versus the buffering effect of social support. METHODS: Data on 54 RA patients were gathered by means of a 2-hr interview at the patient's home. RESULTS: Receiving more daily emotional support positively related to greater psychological well-being; whereas problem-oriented emotional support negatively related to some aspects of psychological well-being. People receiving more social companionship turned out to be less depressed. CONCLUSION: The assumption was confirmed that social support has a major effect on psychological well-being. A buffering effect of social support was not demonstrated.