Workers with a chronic disease and work disability. Problems and solutions.

The prevalence of chronic diseases in the age group 18-65 years is high. Cardiometabolic conditions and musculoskeletal diseases are the most frequent chronic diseases. Depending on disease and comorbidity, the employment rates are considerably lower than for healthy individuals. Chronically ill workers may have problems in meeting job demands, they may experience physical, cognitive or sensory limitations, have fatigue or pain complaints or other disease symptoms. Psychological distress, depressive feelings, feelings of shame or guilt, lack of coping or communicative skills, and non-supportive colleagues and supervisors may add to work-related problems. The ICF Model (International Classification of Functioning, Disability and Health) of the WHO offers a framework for understanding and considering health-related problems at work and finding solutions. Interventions to prevent problems in functioning, sickness absence and work disability may focus on the worker, the workplace, or health care. Multidisciplinary vocational rehabilitation, exercise therapy, cognitive behavioural interventions, workplace interventions and empowerment are interventions with at least some evidence of effectiveness. Future policy could focus more on promotion of workers' health and future research should include the interests and motivations of employers concerning disability management, skills of line managers, the feasibility of interventions to prevent work disability and the context sensitivity of study outcomes.

Workplace problems and solutions for employees with chronic diseases.

BACKGROUND: While many employees who have a chronic disease manage their jobs well, others are hampered in work performance, experience work-related problems and are at risk for job loss. AIMS: To identify the practical and psychosocial barriers recognized by employees with chronic disease who experience work-related problems and to examine preferred work accommodations. METHODS: A questionnaire was sent by mail and completed by current workers who have a chronic disease and experience serious problems at work. RESULTS: One hundred and twenty-two employees participated in this study. On average, they had been ill for 10 years and 44% had more than one disease. The most outstanding work-related problems were psychosocial, including work-home interference and a lack of acceptance of the chronic disease. Performing and finishing work tasks and social relationships with supervisors or colleagues were also felt to be slightly problematic. The most preferred work accommodations included fewer work hours, working from home, a slower work pace and more autonomy in planning work tasks. Almost three-quarters of the respondents were so fatigued that they were at risk of sickness absence or work disability. CONCLUSIONS: A chronic physical disease may lead to both practical and psychosocial problems and serious fatigue. Managing psychosocial problems may decrease fatigue.

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.

Age rationing for renal transplantation? The role of age in decisions regarding scarce life extending medical resources.

The use of age as a selection criterion for scarce life extending medical resources is justified by some theorists and rejected by others. Qualitative research was conducted into age rationing in daily medical practice. Observations were made at two renal transplantation centres and people professionally involved in decision making about transplantation were interviewed. Age appeared to be an important factor in indication decisions concerning individual patients, because it is associated in several ways with both the risks and benefits of transplantation that are weighed against each other. This happens apart from scarcity of donor organs. However, age also appeared to be used as a selection criterion, though apparently to a slight degree. This happens in a covert, implicit way. This is possible because all the aspects of age that are important in indication decisions regarding individual patients may also be used as comparative selection criteria.

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.

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 decisional conflict scale: further validation in two samples of Dutch oncology patients.

The importance of patient involvement in medical decision making is indisputable. Yet, decision making concerning medical treatment options is a difficult task for most patients. In order to study decision-making processes in health care, O'Connor developed the decisional conflict scale (DCS). The DCS assesses the level of 'decisional conflict' that patients experience while making health care decisions, and encompasses the following three subscales: (1) uncertainty about choosing among alternatives; (2) factors contributing to uncertainty; (3) perceived effectiveness of the decision. The aim of the present study is to investigate the reliability and validity of the Dutch version of the DCS. A written version of the DCS was administered in two samples of Dutch cancer patients. One sample consisted of cancer patients faced with the decision whether or not to undergo palliative chemotherapy (N=29). The other sample included women with early stage breast cancer who had to choose between mastectomy or lumpectomy followed by radiation therapy (N=141). The response rates were 76% and 91%, respectively. The reliability coefficients of the three subscales were 0.52, 0.80, 0.84, and 0.74, 0.83, 0.83 in the two samples, respectively. Construct validity was partly supported. Criterion validity was substantiated. In evaluating the factorial validity, it was found that the original three-factor model had to be rejected (chi(2)(87)=293, root mean square error of approximation (RMSEA)=0.137). A subsequent exploratory factor analysis suggested an alternative four-factor model. The psychometric properties of the DCS were partly confirmed in Dutch cancer patients. Improved 'wording' of certain items, e.g. to avoid double negatives, could further increase the factorial validity of the DCS. Then, this scale may be a valuable tool for studies that address the quality of medical decision making.

Ulysses directives in The Netherlands: opinions of psychiatrists and clients.

In this article we present a study on the opinions of Dutch psychiatrists and clients on Ulysses directives. In-depth interviews were conducted with 18 clients and 17 psychiatrists. Most respondents were proponents of Ulysses directives. The most frequently mentioned objective of these directives was to secure timely admission to hospital, although a large minority was mainly interested in giving patients influence on treatment decisions. Psychiatrists differed on how much autonomy they preferred with regard to decisions about the moment of admission and kind of treatment. Clients also differed in this respect. Pressure from others to execute a Ulysses directive, and premature admission to the hospital were mentioned as risks of Ulysses directives. Crisis cards were seen as an alternative by many psychiatrists and some clients. Recommendations are made for a good functioning of Ulysses directives, and the appropriateness of crisis cards as an alternative for a number of patients is discussed.

The meaning of urgency in the allocation of scarce health care resources; a comparison between renal transplantation and psychogeriatric nursing home care.

In the juridical and ethical literature on patient selection criteria it is an unargued premise that those who are most urgently in need of treatment or care will be given priority. The aim of this study is to gain insight into the medical practice of waiting list problems and patient selection at the microlevel, especially with respect to urgency. Thus, the study intends to contribute to the medical ethical discussion on patient selection for scarce resources. The results of qualitative research into the meaning and occurrence of urgency in two health care services, renal transplantation and psychogeriatric nursing home care, are discussed. In the first sector, patients are seldom considered urgent. Criteria for urgency are technical dialysis problems or severe psychological burden due to protracted dialysis treatment. In contrast, psychogeriatric patients are often considered urgent, with the principal criterion being too heavy a care load for informal carers. Both health care services show variation in assigning urgency codes. It appears that the exact meaning of urgency is not self-evident and that admission of urgent patients to nursing homes can be negotiated by professionals or informal carers. This points to the necessity of a discussion within these services as to the actual content matter of urgency. Further, professionals involved in renal transplantation raise several moral and practical arguments against giving patients priority, even if they need treatment urgently. It shows that distributive justice cannot always be applied. Occasionally non-urgent patients are rated urgent as they have been waiting very long due to specific allocation procedures. In these cases urgency is granted in an unexpected way that is ultimately in accordance with the notion of procedural justice.

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.

[Selection of patients for kidney transplantation; how to deal with scarcities in clinical practice]. / Selectie van patiënten voor een niertransplantatie; hoe met schaarste in de medische praktijk wordt omgegaan.

OBJECTIVE: To investigate what criteria are applied in the actual practice of patient selection for renal transplantation and how practice relates to guidelines developed in medical ethics and health law. SETTING: Two centres for renal transplantation and nine dialysis centres. DESIGN: Descriptive. METHODS: Data were collected by observation and open interviews with 33 physicians and other health professionals involved, and analysed using a computer programme for qualitative data. RESULTS: Formally, scarcity of donor organs did not affect the referral and indication of patients for renal transplantation. However, according to some respondents, fewer people were entered on the waiting list because of scarcity. This concerned mainly patients less likely to benefit from a transplantation in terms of life expectancy or enhancement of quality of life. CONCLUSION: There was some 'covert selection', in that scarcity implicitly or unintentionally was a factor in the decision whether or not to place patients on the waiting list for renal transplantation. The absence of consensus on acceptable selection criteria and the emphasis on medical criteria in the social debate on selection criteria may have contributed to this covert selection.

[Joint decisions, how? Physician-patient communication about palliative chemotherapy]. / Gezamenlijk beslissen, hoezo? Arts-patiëntcommunicatie over palliatieve chemotherapie.

The discomfort and benefits of a medical treatment may be appreciated differently by different patients. This is one of the reasons why patients should be informed thoroughly and included in the decision-making about treatment. The obligation to inform was laid down in 1995 in the Decree on the Medical Contract. In a case of metastasized cancer of the prostate it was decided more or less by mutual agreement between doctor and patient to administer palliative chemotherapy. It appeared subsequently that the physician had short-term palliation in mind, and the patient prolongation of survival. Although both are of the opinion that the patient was included actively in the decision-making, this was in reality not at all the case. The question arises whether the Decree on the Medical Contract does not demand too much from certain patients regarding their capacity to make a decision about the treatment of a terminal disease.

[Variation in reporting of available places in the neonatal intensive care units and consequences for efficiency, fairness and quality of care]. / Variatie in aanmelding van vrije plaatsen door neonatale intensive-careafdelingen en consequenties voor doelmatigheid, rechtvaardigheid en kwaliteit van zorg.

OBJECTIVE: To determine whether the national information system on available beds in neonatal intensive care units (NICUs) leads to fair distribution and good efficiency and quality of care. SETTING: Two out of the ten NICUs in the Netherlands. DESIGN: Descriptive. METHODS: Data were gathered through observations and 18 interviews with among others neonatologists, gynaecologists and paediatricians. Another 19 doctors were interviewed by phone after a patient they had referred was refused. Interviews were analysed by means of Kwalitan, a computer programme for analysis of qualitative research. RESULTS: When a patient could not be admitted in his own region, the information system was often used to find out which NICUs had a bed available. Sometimes a NICU was called that, according to the information system, did not have a place available. Reasons were: the information was not up to date and not all available beds were reported. This last reason had to do with the wish to keep a bed free for patients from the NICU's own region. Because most doctors were aware of this, they sometimes negotiated about beds, which was time-consuming. CONCLUSION: The information system was used often, but was working below optimal level, resulting in diminished efficiency. This was primarily caused by the priority given to patients of the own region, which had to do with quality of care considerations. The existing variation in use of the priority policy deserves attention from the viewpoint of procedural justice.

[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.

AIDS and haemophilia. A study among Dutch haemophiliacs on the psychological impact of the AIDS threat, the prevalence of HIV antibodies and the adoption of measures to prevent HIV transmission.

More than 75% of all Dutch haemophiliacs participated in a mail survey that included a section on acquired immunodeficiency syndrome (AIDS). Although no cases of haemophilia-related AIDS had been reported in the Netherlands at the time of our survey, the threat of AIDS had caused considerable anxiety among Dutch haemophiliacs. This had led almost a third of the patients to change their therapy schedules. These changes were mostly not beneficial and possibly counterproductive, since they were not likely to reduce the risk of human immunodeficiency virus (HIV) infection. Measures that were advised to prevent HIV transmission, such as the use of condoms, were seldom carried out, even by the 17% seropositive individuals. We conclude that an increase in the informational efforts towards the patients is called for to avoid ill-advised treatment changes and to enhance preventive behaviour.

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.

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.

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.