[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.

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 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)

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.

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).

The use of preventive health care services: carrier testing for the genetic disorder haemophilia.

A retrospective study was performed to explore carrier testing among women who were possible or obligate carriers of the haemophilia gene. Knowledge of the possibility of carrier testing and use of carrier testing were studied separately. In our exploration we were guided by the diffusion theory and the Health Belief Model. Logistic regression analysis showed that four factors were statistically significant related to knowledge of carrier testing: information via mass media, a haemophilic relative in the nuclear family rather than in the extended family, medical severity of haemophilia, and information from the patients' organization. For those women acquainted with carrier testing two of the four factors just mentioned were significantly related to the utilization of carrier testing i.e. having a haemophilic relative in the nuclear family and the medical severity of the haemophilia. In addition the following factors were associated: attitude towards abortion because of haemophilia, educational level, and marital status. Notwithstanding the prominent function of the mass media and the patients' organization, the respondents themselves stated that relatives, especially parents and sisters, were the most important source of information on genetic counselling and carrier testing.

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.

Professional home care for the elderly: an application of the Andersen-Newman model in The Netherlands.

The Andersen-Newman model, which relates the use of services to predisposing, enabling and need-for-care variables, has not often been applied to the utilization of professional home care by elderly people, especially not in Europe. In this study, the variables of this model were used to predict the amount of professional home care used by new users of this type of care. From the data it appeared that the 'predisposing' and 'enabling characteristics' of the elderly have relatively smaller effects on the amount of professional home care used than do the 'need characteristics'. This is consistent with previous research. However, in this study the amount of variance explained by the model as a whole is considerably higher than was reported elsewhere. This discrepancy, which can partly be attributed to the utility of variables and other methodological issues, is discussed. It can be concluded that, provided several aspects are taken into account, the Andersen-Newman model seems to be an adequate framework for selecting and sequencing relevant variables in the research on professional home care utilization by the elderly.

Factors influencing professional home care utilization among the elderly.

Most explanatory research into the utilization of home care for the elderly has been carried out in a cross-sectional design with multiple regression as the main method of analysis. For methodological reasons we chose another design in a project called 'Professional home care and informal help for the elderly', which has been conducted in the northern part of the Netherlands. Two types of causal variables were distinguished to detect influencing factors on professional home care utilization among the elderly, other than physical limitation: person-bound variables and social network variables. A Mokken Scale analysis for Polychotomous items (MSP) was used to measure the level of physical limitation and a matching procedure to compare 'users' and 'non-users' of professional home care. With regard to person-bound variables, sex, whether or not a person was living alone and the level of the elderly person's income appeared to play a role in the utilization of home care: the user group comprised significantly more women, more elderly living alone and more persons on a low income. Contrary to the findings in other Dutch research, depression and feelings of loneliness did not seem to discriminate between the two groups. With regard to social network variables, the size and structure of the social network was more or less identical in both groups. The non-users network lives slightly closer. In general, the small differences found between the groups were to the non-users' advantage. Moreover, the non-users received more informal and private care with ADL and IADL activities.

Sex ratio of the mutation frequencies in haemophilia A: estimation and meta-analysis.

A hereditary disease with excess mortality such as haemophilia is maintained in the population by the occurrence of new cases, i.e. mutations. In haemophilia, mutations may arise in female or male ancestors of a 'new' patient. The ratio of the mutation frequencies in males over females determines the prior risk of carriership of the mother of an isolated patient. An estimate of this prior risk is required for the application of Bayes' theorem to probability calculations in carriership testing. We have developed a method to estimate the sex ratio of the mutation frequencies; it does not depend on the assumption of genetic equilibrium, nor require an estimate of the reproductive fitness of haemophilia patients and carriers. Information from 462 patients with severe or moderately severe haemophilia A was gathered by postal questionnaires in a survey that included practically all Dutch haemophiliacs. Pedigree analysis was performed for the 189 patients of these 462, who were the first haemophiliacs in their family. By the maximum likelihood method, the ratio of the mutation frequencies in males and females was estimated at 2.1, with a 95% confidence interval of 0.7-6.7. In addition, we performed a meta-analysis of all published studies on the sex ratio of the mutation frequencies. When the results of six studies were pooled, it was estimated that mutations originated 3.1 times as often in males as in females. The 95% confidence interval was 1.9-4.9. This implies that 80% of mothers of an isolated patient are expected to be haemophilia carriers.

Modern haemophilia treatment: medical improvements and quality of life.

Adequate replacement therapy in haemophilia has been available for two decades. This has led to considerable improvements in the life expectancy and physical status of haemophilia patients. A study was conducted to investigate whether this has also led to improvements in quality of life. With this aim, information was obtained from 935 Dutch haemophiliacs by mailed questionnaires on relationships, marriage, family life and employment. Haemophilia patients were less often married than men in the general population (13% fewer) and had a lower total number of children (30% lower, 17% for those who were married). Twenty-two per cent of the patients were not employed and received an income from the disability funds. While severity of haemophilia, joint damage and age increased the risk of disability, it was noted that home treatment was associated with a 50% reduction in this risk. Remarkably, haemophilia patients did not differ from the general population in their view of the quality of their own health. The results of this study show a positive influence of modern haemophilia treatment on quality of life. At present, AIDS overshadows all optimistic feelings one may have about this field. However, the results described here demonstrate the benefits that can be achieved with adequate replacement therapy, and justify the expectation of further improvements in the near future.

Carrier testing and prenatal diagnosis for hemophilia: experiences and attitudes of 549 potential and obligate carriers.

Experiences with and attitudes toward carrier testing and prenatal diagnosis were evaluated among 549 potential and obligate carriers of hemophilia. Almost everybody considered carrier testing to be useful. Forty-nine percent had been tested for carriership, 10% had only received limited information, and 41% had not been tested and had never received information about the heredity of hemophilia. More married women, women with severe hemophilia in their family, and women closely related to a patient with hemophilia had been tested for carriership than others. Lack of information about the probability of carriership for female relatives and a similar ignorance of the possibility of carrier testing were important reasons for not having been tested. Eleven percent of the women with one or more children had undergone prenatal diagnosis in the past. Thirty-one percent of the study population would favour prenatal diagnosis with the implication of a potential abortion in early pregnancy and half of them would choose this option even in late pregnancy. Most of the women who objected to prenatal diagnosis did so because they did not consider hemophilia to be a sufficiently serious disorder to justify an abortion.

The development of a hierarchical polychotomous ADL-IADL scale for noninstitutionalized elders.

A hierarchical scale comprising 18 activities of daily living (ADL) and instrumental activities of daily living (IADL) items was tested on a sample of 101 noninstitutionalized people of 60 years and older in a northern part of the Netherlands. Three possible answers per item were used. The results confirmed the possibility of constructing a unidimensional, hierarchical, polychotomous scale for older people, measuring "functional problems on ADL-IADL." Moreover, the possibility of using two separate subscales (for ADL and IADL) was observed.

Emotional and social reactions of children to epilepsy in a parent.

This study examined the emotional and social reactions of children to epilepsy in a parent. Clinical impression and previous research suggests that these children have special psychosocial problems. Fifteen families, randomly selected from outpatient clinics, were evaluated using an open interview, standardized inventories and a personality test. The results showed that the investigated families had acceptable levels of communication about the epilepsy. The majority of children were informed about the parent's epileptic condition before they witnessed a seizure. An overall judgement of social functioning showed that the children had sufficient social adaptation. Analysis of the personality inventories revealed no signs of serious personality disorders in the children. Closer inquiry into the results showed that, despite the availability of information, misconceptions about the epilepsy and associated fears existed. In particular, extreme denial of somatic complaints was observed in a subgroup. Associated problems in the area of social functioning concerned a defensive attitude towards inviting friends home, increased feeling of responsibility for the parents and academic problems at school.

[Social effects of current hemophilia treatment]. / De maatschappelijke effecten van de moderne hemofiliebehandeling.

The influence of modern substitution therapy on social functioning of haemophiliacs was studied by means of surveys of education and employment in 1972, 1978 and 1985. In addition we studied the physical mobility of the patients. Non-attendance at school and educational delay decreased substantially over thirteen years and the educational level of adult patients is the same as that of the general male population. Sick leave decreased also but the number of disabled did not. Considering the general rise in the number of disabled, the general unemployment situation may be partly blamed for this. Younger patients have a better physical mobility than the older ones who did not have appropriate treatment of bleedings when they were young. Trends in reduction of joint impairment and increase of physical mobility are expected to continue in the coming decades, with a positive effect on social functioning.