Health care utilization among rheumatoid arthritis patients referred to a rheumatology center: unequal needs, unequal care?

OBJECTIVE: To quantify the utilization of health care by rheumatoid arthritis (RA) patients and to estimate the contribution of patient characteristics to the explanation of the use of care, in order to evaluate whether those in need of care actually receive care. METHODS: A questionnaire survey and a clinical examination were conducted among patients with RA referred to a rheumatology center. Health care utilization was assessed for medical care, allied health care, psychosocial care, and home care. The influence of sociodemographic variables and clinical and health characteristics on health care utilization was assessed by means of logistic regression. RESULTS: Multivariate analyses showed that, for all types of services, disease-related factors explained most of the utilization. However, some sociodemographic variables (age, sex, and living situation) were also related to the utilization of care. CONCLUSION: Most patients received the care they needed. However, for the elderly with RA, problems in access to allied health care and psychosocial care exist.

The role of social and psychologic resources in caregiving of cancer patients.

BACKGROUND: The role of social support and personality within the cancer caregiving process has remained a relatively unexplored area. The current longitudinal study examines the main and moderating effects on caregiver experiences and caregiver's depression over time of various social and psychologic resources. METHODS: Newly diagnosed colorectal carcinoma patients and their partners (N = 148) were included and data were obtained at three measurement points: 2 weeks prior to hospital admission and 3 months and 6 months after discharge. The initial and change scores of the caregiver's negative and positive social interactions and personality attributes (mastery, neuroticism, and extraversion) were included to assess their impact on caregiver experiences and depression over time. RESULTS: The main effects of social and psychologic resources on caregiver experiences were found to be small to absent. With respect to caregiver depression, both initial scores and changes in neuroticism, mastery, and negative social interactions were shown to have substantial main effects over time. Moreover, daily emotional support and mastery modified the relations between caregiver experiences and caregiver depression. Caregivers with a low level of daily emotional support, as well as those with a low score on mastery and who also perceived caregiving in a more negative way were identified as more depressed over time. CONCLUSIONS: The results of the current study demonstrate the importance of including various social and psychologic resources in studying the cancer caregiving process. It illustrates the distinctive impact of these resources on the depression of caregivers of patients with cancer, and therefore helps healthcare providers understand why some persons adapt better than others to their caregiving role.

Patterns of caregiver experiences among partners of cancer patients.

This study describes patterns of caregiving experiences in partners of patients with cancer (N=148) over a 6-month period. Caregiving experiences were assessed by means of the Caregiver Reaction Assessment Scale (CRA), which consists of four negative dimensions and one positive subscale: Disrupted Schedule, Financial Problems, Lack of Family Support, Loss of Physical Strength, and Self-Esteem. Subgroup analyses were performed according to gender, age, and socioeconomic status (SES). Type, size, and direction of changes in caregiving experiences over time were analyzed both at a group level and at an individual level. Patterns of caregiver experiences appeared to vary between the subgroups; women, younger caregivers, and caregivers with a higher SES experienced caregiving more negatively or less positively. The findings illustrate the value of studying inter- and intraindividual patterns across different subgroups, and stress that caregiver experiences should be regarded as a multidimensional concept that includes both negative and positive experiences of caregiving.

Determinants of caregiving experiences and mental health of partners of cancer patients.

BACKGROUND: Research regarding informal caregiving showed considerable individual variation in responses to cancer caregiving. The current longitudinal study examined determinants of caregiver outcomes in terms of caregiver experiences at 3 months and caregiver's mental health at 6 months after hospital discharge. It included both negative and positive dimensions of caregiving outcomes. METHODS: One hundred forty-eight patients with newly diagnosed colorectal carcinoma and their partners were included. Caregiver experiences were assessed by the Caregiver Reaction Assessment Scale, which contains four negative subscales (disrupted schedule, financial problems, lack of family support, and loss of physical strength) and one positive subscale (self-esteem). The mental health of the caregiver was assessed in terms of depression and quality of life. Possible determinants of the caregiver's experiences and mental health were categorized according to characteristics of the caregiver, the patient, and the care situation. Caregiving experiences were studied as a fourth additional category of possible determinants of the caregiver's mental health. RESULTS: Each domain of the caregiving experience was explained by different factors, with total explained variances ranging between 11-46%. Negative caregiver experiences were associated with a low income, living with only the patient, a distressed relationship, a high level of patient dependency, and a high involvement in caregiving tasks. Caregivers with a low level of education and caregivers of patients with a stoma were able to derive more self-esteem from caregiving. Although caregiving may lead to depression, especially in those experiencing loss of physical strength, caregivers may sustain their quality of life by deriving self-esteem from caregiving. CONCLUSIONS: It is important that professionals involved in the ongoing care of cancer patients and their families be aware of the increasing demands made on caregivers and the specific problems and uplifts they perceive in caregiving. Professional caregivers are urged to involve informal caregivers with care explicitly and continuously. However, specific attention to those caregivers who live only with the patient, those with a low income, those with a distressed relationship, and those with a high level of patient dependency and care involvement is warranted.

Measuring both negative and positive reactions to giving care to cancer patients: psychometric qualities of the Caregiver Reaction Assessment (CRA).

The Caregiver Reaction Assessment Scale (CRA) is an instrument designed to assess specific aspects of the caregiving situation, including both negative and positive dimensions of caregiving reactions. This paper addresses the psychometric qualities of the CRA in a multicenter study among partners of colorectal cancer patients (n = 181). No problems in feasibility were observed. Five dimensions of caregiver reactions were identified through exploratory factor analysis: the impact of caregiving on disrupted schedule, financial problems, lack of family support, health problems and the impact of caregiving on caregiver's self-esteem. Reliability analyses showed that standardized Cronbach's alpha's varied between 0.62 and 0.83 for the separate subscales, indicating sufficient internal consistencies. Construct validity was supported. The CRA proves to be a feasible, reliable and valid instrument for assessing both negative and positive reactions to caregiving among partners of patients with cancer.

Cancer and caregiving: the impact on the caregiver's health.

A diagnosis of cancer affects not only the patient but also their significant others, especially when a lot of care tasks are involved. Some caregivers perceive the care as a burden, while others consider it a challenge. In this article, findings concerning the impact of cancer caregiving on informal caregivers will be described. No consistent results are reported, and little is known about patterns of caregiving changes in relation to the course of the patient's illness. Attention will be given to factors which have been identified as influencing the course and consequences of caregiving. These factors form the basis of a conceptual research model for caregivers of cancer patients. As cancer progresses, care tasks are generated, which can be perceived by the caregiver as either negative (i.e. burden) or positive. Furthermore, these caregiver experiences may lead to negative as well as positive effects on the caregiver's health and these relationships can be assumed to be bidirectional.

Mortality in patients with hemophilia. Changes in a Dutch population from 1986 to 1992 and 1973 to 1986.

OBJECTIVE: To determine causes of death and mortality rates in patients with hemophilia over a period of 20 years, to assess changes in mortality, and to distinguish between hemophilia-related death and recent death induced by viral infections. DESIGN: Cohort study of 919 patients followed from January 1986 to June 1992. Results were compared with outcomes of previous follow-up from 1973 to 1986. SETTING: Consecutive national questionnaire surveys on hemophilia, using patient registries of the Netherlands Hemophilia Society and Dutch hemophilia centers. PATIENTS: 919 males hemophilia A or B who participated in a national questionnaire survey on hemophilia in 1985. Median duration of follow-up was 6.4 years, which yielded 5753 person-years of follow-up. The mean age at study entry was 30 years (range, 1 to 85 years). MEASUREMENTS: Standardized mortality ratios, causes of death, median life expectancy, age-adjusted relative risks associated with the type or severity of hemophilia, presence of inhibitors, prophylaxis, and human immunodeficiency virus infection. RESULTS: 45 patients (5%) died between January 1986 and June 1992; 22.6 patients had been expected to die. Thus, the overall standardized mortality ratio was 2.0. The overall median life expectancy was 66 years for the cohort studied from 1973 to 1986 and 68 years for the cohort studied from 1986 to 1992. When deaths related to viral infection were excluded, the life expectancy almost equaled that of the general male population. Between 1986 and 1992, 1 patient died of ischemic heart disease compared with the 5.2 who were expected to die of this disease. Infection with HIV was the strongest independent predictor of death (relative risk, 27.5 [95% CI, 5.7 to 132.8]). After adjustment for HIV infection, no other hemophilia-related risk factors were associated with the risk of death. CONCLUSIONS: The acquired immunodeficiency syndrome and hepatitis strongly influence mortality in patients with hemophilia. In the absence of viral infections, the life expectancy of patients with hemophilia would almost equal that of the general male population.