[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.

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.

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.

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.

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.

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)

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.

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.

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.

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.

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.

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.

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.

[Depressive symptoms, invalidity and the use of professional home care by the elderly; replication and variations]. / Depressieve klachten, invaliditeit en het gebruik van professionele thuiszorg door ouderen; replicatie en nuances.

Dutch researchers found a twice as high prevalence of depression among older users of professional home care compared to non-users. They concluded that depression might be a causal factor in the demand for professional home care. One of our research-questions in a project called 'Professional home care and informal help for the elderly' is the replication of this study: in which way is depression related to professional home care utilization among the elderly? To answer this question we compared a subsample of 60+ years old people, who just received professional home care with a subsample of 60+ years old who didn't get professional home care with more or less the same need of care based on physical handicaps (difficulties in performing a number of ADL- and household activities). Although we also found a positive correlation between depression and physical limitations, our results didn't support another hypothesis: the difference of depression between users and non-users. This difference may be caused by a different research-design and the accuracy in the analysis.

[Formal and informal assistance in the elderly. A study on the division of tasks among the elderly, informal support persons and homemaker services]. / Formele en informele hulpverlening bij ouderen. Een onderzoek naar de taakverdeling tussen bejaarden, informele hulpverleners en de gezinsverzorging.

This article deals with the division of tasks between formal and informal networks of the elderly. Research has been done on the kind and degree of participation in the care of elderly by the elderly themselves, the role of the 'most important' persons in their social network as well as on the role of family home service. Sixty-seven clients of the '7 X 24-hours' home help in Velp were involved. The effect of household composition was also investigated. As regards to three different kinds of activities, the results indicate a division of tasks between formal and informal networks; clients themselves perform especially ADL-activities, informal caregivers supporting/supervising activities and the home help household activities. Furthermore it appears that of the total number of activities performed by home help nearly three quarters is neither performed by the elderly themselves nor by the 'most important' person in their social network.

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 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.

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).

Treatment, seizure-free periods, and educational achievements: a follow-up study among children with epilepsy and healthy children.

The medical situation (seizure-free periods, use of medicine, medical supervision) of a group of 136 epileptic children was investigated at the age of 11. One hundred and nine of these children were individually matched with 109 children without chronic illness and their educational achievements were compared. We came by these groups via their family doctors or their schools/teachers respectively. We followed-up their medical and educational situation 5 years later. In this way we have been able to establish long-term trends regarding the medical situation and the educational achievements of the children. From the data it appeared that between half and two-thirds of the children were seizure-free for 5 years or longer. One-quarter, however, seemed to be therapy resident and still had seizures. At the age of 16, four out of 10 children were no longer under the supervision of any health care provider; five out of 10 did not use antiepileptic drugs anymore; but 20% of them still had seizures. There was no evidence of such improvements in the educational careers of these children: their educational levels stayed behind those of the controls.