T Suurmeijer

Social Functioning, Psychological Functioning, and Quality of Life in Epilepsy

Summary:  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 peoples QoL, whereas QoL itself was conceived as a general “value judgment” about ones life.

Mortality and causes of death in Dutch haemophiliacs, 1973-86

Mortality figures were calculated for a group of 717 Dutch haemophiliacs over the period 1973‐86. Follow‐up was on average 10.9 years; no patients were lost to follow‐up. The data were compared to the general male population by actuarial methods and patient‐year analysis. Forty‐three patients died, while 20 deaths were expected in a hypothetical group of non‐haemophiliacs of the same age distribution. Hence, overall mortality was 2.1 times higher than in the general population. This leads to a calculated life expectancy of 66 years, as compared to 74 years in the general male population. Mortality did not differ much by severity of haemophilia. A possibly beneficial effect of prophylaxis on longevity was observed. Haemorrhage occurred in half of all deaths and among these traumatic bleeding was the most prevalent. The number of deaths due to ischaemic heart disease was significantly lower (80% reduction) than expected and therefore the authors conclude that haemophilia offers protection against ischaemic heart disease. Cancer mortality was significantly higher (2.5 times) than expected.

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.

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.

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 individuals 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. Cronbachs 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.

Physical condition, longevity, and social performance of Dutch haemophiliacs, 1972-85.

A study was carried out among haemophiliacs in The Netherlands to evaluate the effect of modern substitution treatment (replacing the missing clotting factors) on medical and social performance. Three questionnaires were sent between 1972 and 1985. The use of prophylactic treatment in the group of patients with severe and moderately severe haemophilia increased from 21% (n = 242) in 1972 to 36% (n = 559) in 1985. Home treatment programmes increased from 4% to 53%. Overall mortality was 2.1 times higher than in the general male population, which leads to a calculated life expectancy of 66 years compared with 74 years in the general male population. Severe joint impairment was prominent in the older age groups, reflecting insufficient treatment in the past. A sharp decrease in the use of inpatient and outpatient hospital facilities was observed as well as much less absence from school and work. It is concluded that the high costs of modern substitution treatment are fully justified.

Social support, rheumatoid arthritis and quality of life: concepts, measurement and research

In recent years, medical technology has improved considerably and the possibilities to replace destroyed parts of the body that have been affected by rheumatoid arthritis (RA), have grown also. However, the availability and application of advanced techniques does not automatically entail an improvement of quality of life of individuals. Although the physical (dis)ability of RA patients very often leads to certain restrictions, it is not the only element in the evaluation of life-as-a-whole. The way in which the RA-patient copes with the uncertainty of tomorrow and the management of pain and fatigue is another important element in evaluating quality of life. Beside personality factors, social network and social support are regarded to play an important role in this respect and subsequently in the well-being of individuals in general, and especially where it concerns individuals suffering from a chronic disease. Today, a growing number of evidence of the beneficial impact of social support is available some of which are discussed.

Contribution of partner support in self-management of rheumatoid arthritis patients: An application of the theory of planned behavior

The aim of this exploratory study was to test the applicability of a model derived from the Theory of Planned Behavior on self-management. In this model social support from the partner, attitude and self-efficacy are determinants of intention, and intention and self-efficacy are determinants of self-management. We tested the model on rheumatoid arthritis patients who have a partner, using regression analyses and structural equation models. Partner support and attitude partly explained the variance in intention. Intention in turn partly explained the variance in self-management. Self-efficacy showed a tendency to positively affect intention and self-management. The present study provided moderate support for the use of the constructs and ideas derived from the Theory of Planned Behavior—attitude, social support, self-efficacy, and intention—in predicting and explaining self-management.

How Guillain–Barre´ patients experience their functioning after 1 year

Objective –  To analyze how the patient himself perceives his physical and social situation 1 year after Guillain–Barré syndrome (GBS).

Employment of individuals with haemophilia in The Netherlands

A study was performed to determine whether improvements in the treatment of haemophilia over the past 20 years have influenced the prospects of these patients in the labour market. Surveys on the medical and social situation of haemophiliacs in The Netherlands were carried out in 1972, 1978 and 1985. Most of the patients participated in these surveys. Trends in employment do not show either an increase in the number of employed haemophiliacs or a decrease in the number administratively defined as disabled. However, considering the influence of the economic recession on the position of the chronically sick on the labour market and the rise in the number administratively defined as disabled in the Dutch population, haemophiliacs perform well. Sick leave has decreased considerably. Although the employment rate for the group of haemophiliacs is lower than that for the general male population, the level of employment in relation to educational achievements is high and most of the employed do not feel limited in their daily job activities by the haemophilia. Physical mobility is a main factor influencing the employment status but other factors, such as the type of occupation or former occupation and prejudice against people with haemophilia, have to be considered.