[Show abstract][Hide abstract] ABSTRACT: To evaluate the responsiveness of a newly developed generic questionnaire, the Impact on Participation and Autonomy (IPA), which focuses on 2 aspects of participation: perceived participation and the experience of problems.
Preliminary study of questionnaire responsiveness compared with transition indices. Participants completed 2 assessments, 3 months apart. To measure change, they completed 9 transition indices at the second assessment. One transition index assessed perceived change in general, the other 8 addressed 1 of the specific problem experience items in the IPA.
Outpatient clinic of the rehabilitation department of an academic hospital.
Fifty-seven consecutive persons admitted for multidisciplinary rehabilitation treatment, with various diagnoses, were enrolled in the study; 49 persons completed both assessments.
Standardized response mean (SRM) and area under the receiver operating characteristic curve (AUC) for participation domain scores and problem scores.
SRMs and AUCs for the participation domains ranged from 0.1 to 1.3 and from 50% to 92%, respectively. The SRMs of the items on the experience of problems ranged from 0.4 to 1.5, whereas their AUCs ranged from 56% to 74%.
The IPA detected within-person improvement over time, but its responsiveness must be confirmed in a larger study sample.
Archives of Physical Medicine and Rehabilitation 12/2002; 83(11):1524-9. DOI:10.1053/apmr.2002.35099 · 2.44 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: The study objective was to examine the relation between combinations of chronic conditions in the same person and the volume and variety of health care utilization.
Analysis of continuous Netherlands Health Interview Survey data (1990-1997). The study population consisted of adults (16 years and older) reporting at least one chronic condition from the following six disease clusters: musculoskeletal diseases, lung diseases, neurological disorders, heart diseases, diabetes, and cancer (n = 13,806). Health care utilization is categorized in terms of contacts in the preceding year with a general practitioner (GP), medical specialist, physiotherapist, home help and/or home nursing, and hospital admission. Utilization was adjusted for age, gender and year of interview. Statistical methods used are contingency table analysis and (logistic) multiple regression.
Almost one-fifth of the study population reported more than one chronic condition. Musculoskeletal disease, in addition to being the most common single condition, was found to be the condition most likely to occur with one of the remaining five disease clusters. Seven per cent reported not having used any services at all. Two-thirds of the study population used at least two different services in the previous year. In contrast, 26% of the study population reported comprehensive utilization patterns (GP and/or home care and/or physiotherapist and/or medical specialist and/or hospitalization: minimum of three types). Persons with more than one chronic condition reported having used more services, in terms of volume and variety, than those with only one condition.
There is a strong association between comorbidity and the volume and variety of health care services that are used. Since many people have comorbid conditions, their use of health services is more complex than would be suggested by a one-disease approach. New disease management systems need to be developed to reflect the multiplicity of health care needs of the growing number patients with more than one chronic condition.
The European Journal of Public Health 01/2002; 11(4):365-72. DOI:10.1093/eurpub/11.4.365 · 2.46 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: A literature search was carried out to identify and summarize the existing information on causes and consequences of comorbidity of chronic somatic diseases. A selection of 82 articles met our inclusion criteria. Very little work has been done on the causes of comorbidity. On the other hand, much work has been done on consequences of comorbidity, although comorbidity is seldom the main subject of study. We found comorbidity in general to be associated with mortality, quality of life, and health care. The consequences of specific disease combinations, however, depended on many factors. We recommend more etiological studies on shared risk factors, especially for those comorbidities that occur at a higher rate than expected. New insights in this field can lead to better prevention strategies. Health care workers need to take comorbid diseases into account in monitoring and treating patients. Future studies on consequences of comorbidity should investigate specific disease combinations.
[Show abstract][Hide abstract] ABSTRACT: 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.
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.
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.
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.
Cancer 04/2001; 91(5):1029-39. · 4.90 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: To examine the homogeneity, test-retest reliability, construct validity, and concurrent validity of the Impact on Participation and Autonomy Questionnaire (IPAQ).
Cross-sectional study with a test-retest subsample.
One hundred twenty-six persons from 5 diagnostic groups recruited from the outpatients clinics of 2 rehabilitation centers and the rehabilitation department of an academic hospital.
The IPAQ and 3 other self-administered questionnaires (Sickness Impact Profile [68-item version], London Handicap Scale [LHS], Medical Outcome Study Short-Form Health Survey). The IPAQ was completed twice by 75 respondents within approximately 2 weeks.
The IPAQ addresses autonomy and participation in 5 domains: autonomy indoors, family role, autonomy outdoors, social relations, and work and educational opportunities. Cronbach's alpha for the several domains ranged between.81 and.91, indicating good homogeneity. On item level, weighted kappas ranged between.56 and.90. On domain level, the test-retest reliability of the IPAQ was good: intraclass correlation coefficients ranged between.83 and.91. Convergent validity was largely supported by the correlations between 4 domains of the LHS and the IPAQ. Discriminant validity was best demonstrated by low correlations between the IPAQ and 2 domains of the LHS representing theoretically different constructs.
The IPAQ is a reliable and valid instrument for assessing autonomy and participation in chronic disorders. Its responsiveness requires further study.
Archives of Physical Medicine and Rehabilitation 03/2001; 82(2):210-6. DOI:10.1053/apmr.2001.18218 · 2.44 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: In a cohort 760 consecutive stroke patients (23 hospitals in the Netherlands), we studied prognosis in relation to stroke type and focused on (a) short-term and long-term mortality, and (b) long-term functional health. Based on clinical and CT data, we distinguished infratentorial strokes from supratentorial strokes (lacunar infarctions, (sub)cortical infarctions and intracerebral hemorrhages). Cumulative mortality for all stroke patients was 34% at 6 months, 51% at 3 years, and 62% at 5 years. Short-term mortality could be explained by stroke type, whereas long-term mortality could not. Of all survivors, 55% were in poor functional health at 6 months, 49% at 3 years and 42% at 5 years. Long-term functional health outcomes were associated with stroke type. We conclude that the impact of stroke type on mortality is limited to the first 6 months, whereas the type of stroke influences the long-term functional health.
[Show abstract][Hide abstract] ABSTRACT: 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.
The Gerontologist 01/2001; 40(6):738-46. DOI:10.1093/geront/40.6.738 · 3.21 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Handicap or health-related quality of life (HRQL) measures are seldom used in stroke trials, although the importance of these measures has been stressed frequently. We studied the clinical meaning of the Stroke-Adapted Sickness Impact Profile-30 (SA-SIP30) and the original SIP136 for use in stroke research.
We included 418 patients who had had a stroke 6 months earlier. We studied the associations between the SA-SIP30 and SIP136 scores versus other frequently used outcome measures from the International Classification of Impairments, Disabilities, and Handicaps (ICIDH) (Barthel Index, Rankin Scale) and the HRQL model (health perception items, Euroqol). To interpret the continuous SA-SIP30 and SIP136 scores, we used receiver operating characteristic curve analysis with the aforementioned measures as external criteria.
The psychosocial dimension scores of both SIP versions remained largely unexplained. The physical dimension and total scores of both SIP versions were mainly associated with the disability measures derived from the ICIDH model, as well as with the physical HRQL domains. Most patients with an SA-SIP30 total score >33 or an SIP136 total score >22 had poor health profiles. There were no major differences between the SA-SIP30 and the SIP136, although the SA-SIP30 scores were less skewed toward the healthier outcomes than the SIP136.
Our study showed that (1) both SIP total scores primarily represent aspects of physical functioning and not HRQL; (2) both SIP versions provide more clinical information than the frequently used disability measures; and (3) the SA-SIP30 should be preferred over the SIP136.
[Show abstract][Hide abstract] ABSTRACT: The aim of the study was to investigate the contribution of chronic conditions and disabilities to poor self-rated health from the perspectives of the patient and the population: (a) What is the impact of seven somatic chronic conditions on self-rated health, independent of disabilities? and (b) To what extent can poor self-rated health be attributed to the selected chronic conditions and disabilities?
Data came from the 1990 (n = 509), 1993 (n = 381), and 1995 (n = 340) surveys of the Zutphen Elderly Study. Odds ratios (OR) and population attributable risks (PAR) were calculated to quantify the contribution of chronic conditions and disabilities to poor self-rated health.
From the patient perspective, stroke was most strongly associated with poor self-rated health (OR = 3.5, 95% confidence interval: 1.8-6.9). From the population perspective, 63% of poor self-rated health could be attributed to the selected chronic conditions, with respiratory symptoms (28%), musculoskeletal complaints (24%), and coronary heart disease (13%) making the largest contribution. A total of 73% could be attributed to chronic conditions and disabilities.
In this population of elderly men, stroke resulted in the largest losses in self-rated health in individual patients, whereas the largest contributions to poor self-rated health in the population were made by respiratory symptoms and musculoskeletal complaints.
The Journals of Gerontology Series A Biological Sciences and Medical Sciences 11/1999; 54(10):M501-6. DOI:10.1093/gerona/54.10.M501 · 4.98 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: To report on the feasibility and psychometric properties in terms of homogeneity and construct validity of a newly developed handicap questionnaire focusing on person-perceived handicaps: the Impact on Participation and Autonomy (IPA).
Cross-sectional. SETTING, subjects and outcome measure: One hundred consecutive individuals from the outpatient clinic of the department of rehabilitation of an academic hospital administered the new questionnaire IPA.
The results show good homogeneity and construct validity of the IPA. Factor analysis showed that the scale consists of four factors, explaining 68% of the total variance: social relationships, autonomy in self-care, mobility and leisure, and family role. Homogeneity of the four subscales was considered good, Cronbach's alpha ranged from 0.84 (family role) to 0.87 (social relationships). Feasibility in terms of the number of missing values and administration time needed was satisfactory.
The first results suggest that the IPA promises to be a useful handicap questionnaire. Further research is needed to establish test-retest reliability, convergent validity and responsiveness to change.
[Show abstract][Hide abstract] ABSTRACT: 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.
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.
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.
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.
Cancer 09/1999; 86(4):577-88. DOI:10.1002/(SICI)1097-0142(19990815)86:43.0.CO;2-S · 4.90 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: 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.
Social Science & Medicine 06/1999; 48(9):1259-69. DOI:10.1016/S0277-9536(98)00426-2 · 2.56 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: There is an increasing need to get insight into the social and societal impact of chronic conditions on a person's life, i.e. person-perceived handicap. The purpose of this study is to report how current handicap questionnaires assess handicap.
A literature search using both Medline and the database of the Dutch Institute of Allied Health Professions (NPi) was conducted for handicap questionnaires. Questionnaires were included if addressing handicaps or life roles, environmental influences and social consequences of a disease. Excluded were questionnaires focusing on only impairments, disabilities or quality of life.
20 questionnaires were identified. Handicap is not uniformly defined in these questionnaires. Based on different concepts, the various questionnaires encompass different domains and different aspects are emphasized in similar domains. Fourteen questionnaires assess society-perceived handicaps, and do not address the life roles, care needs or individual problem-experience. Six questionnaires are to some extent person-perceived, but a generic person-perceived handicap questionnaire could not be identified. It is concluded that development of a generic person-perceived handicap questionnaire is essential for adequate assessment of needs, outcome, and relevance of rehabilitation interventions from the individual's point of view.
Disability and Rehabilitation 04/1999; 21(3):97-105. · 1.84 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: To describe unmet care demands as perceived by stroke patients and to identify sociodemographic and health characteristics associated with these unmet demands to investigate the appropriateness of health care.
Sample of patients who participated in a multicentre study (23 hospitals) on quality of care in The Netherlands.
Non-institutionalised patients who had been admitted to hospital because of stroke. Patients were interviewed six months (n = 382) and five years (n = 224) after stroke.
Six months after stroke data were collected on: (a) sociodemographic characteristics in terms of age, sex, living arrangement, educational level, and regional level of urbanisation; (b) health characteristics in terms of cognitive function, disability, emotional distress, and general health perception; (c) utilisation of professional care; and (d) unmet care demands as perceived by patients. Data on utilisation of care and unmet demands were also collected five years after stroke. Data were collected from June 1991 until December 1996.
The percentage of unmet care demands was highest at six months after stroke (n = 120, 31%). Multiple logistic regression analyses showed that disabled patients were more likely to be unmet demanders for therapy, (I)ADL care and aids (range odds ratio (OR) = 3.5 to 7.9) than to be no demanders, whereas emotionally distressed patients were more likely to be unmet demanders for psychosocial support (OR = 3.8). When comparing unmet demanders with care users only for (instrumental) activities of daily living (I)ADL care differences were found: men (OR = 3.8), disabled patients (OR = 3.0), and emotionally distressed patients (OR = 6.5) were more likely to be users.
Patients who perceived an unmet care demand do appear genuinely to have an unmet care need as supported by assessment of their health status: (a) types of unmet care demands correspond with types of health problems and (b) unmet demanders were in general unhealthier than no demanders and more comparable with care users for health characteristics.
To improve an equitable distribution of healthcare services, guidelines for indicating and allocating health care have to be developed and should be based on scientific evidence and consensus meetings including professionals' and patients' perspectives.
Quality in Health Care 04/1999; 8(1):30-5. DOI:10.1136/qshc.8.1.30
[Show abstract][Hide abstract] ABSTRACT: Few data are available on the specific caregiving-related problems of stroke patients' caregivers and factors that influence the burden of these caregivers. The aim of this study was to describe the level and specific nature of the burden of caregiving as experienced by stroke patients' partners and to estimate the relative contribution of patient and partner characteristics to the presence of partners' burden.
As part of a multicenter study on quality of care, burden of caregiving was assessed in 115 partners at 3 years after stroke. Explanatory factors of burden were studied in terms of (1) characteristics of patients (sociodemographic status, severity, type, and localization of stroke, disability, handicap, and unmet care demands) and (2) characteristics of partners (age, sex, disability, quality of life, loneliness, amount of care provided, and unmet care demands).
Partners of stroke patients perceived most caregiving burden in terms of feelings of heavy responsibility, uncertainty about patients' care needs, constant worries, restraints in social life, and feelings that patients rely on only their care. Multiple regression analysis revealed that a higher level of burden could partly be explained by patients' disability (R2 = 14%), but primarily by partners' characteristics in terms of emotional distress (R2 = 16%), loneliness (R2 = 6%), disability (R2 = 3%), amount of informal care provided (R2 = 2%), unmet demands for psychosocial care (R2 = 4%), and unmet demands for assistance in activities of daily living (R2 = 2%).
Higher levels of burden are primarily related to partners' emotional distress and less to the amount of care they provided, or to patients' characteristics. Sharing responsibilities, helping to clarify the patients' needs, and getting occasional relief of caregiving may be important in the support of caregivers.
[Show abstract][Hide abstract] ABSTRACT: The burden of caregiving can be harmful to both carers' and patients' functional health, but a specific instrument to assess the burden of caregiving as experienced by carers of stroke patients is not yet available. The Sense of Competence Questionnaire (SCQ), reliable and valid among caregivers of dementia patients, was evaluated on its metric properties in a population of partners of stroke patients.
As part of a multicenter study on quality of care, SCQ burden scores of partners and functional health of patients were assessed 6 months after stroke (group A; n=166). In this study group, the reliability in terms of homogeneity, the construct validity, and the clinical validity of the SCQ were evaluated. The test-retest reliability was assessed in a separate group (group B; n=47). The feasibility was examined in both study groups.
The reliability of the total SCQ score was good (Chronbach's alpha coefficient=0.83; intraclass correlation coefficient=0.93). Statistical support for construct validity was shown by principal-components analysis. Clinical validity was supported by the association between higher SCQ burden scores and patients' impaired functional health: cognitive function (P=.03), disability (P=.10), handicap (P<.01), and quality of life (P=.02).
The SCQ is a reliable and valid instrument for assessing burden of caregiving as experienced by partners of stroke patients. It is suitable for use in cross-sectional stroke studies and may help to identify partners at risk for high levels of burden and caregiving-related problems.
[Show abstract][Hide abstract] ABSTRACT: The associations between nine domain-specific measures of health (e.g., depressive symptoms, psychological distress, mental health, physical functioning, role functioning, social functioning, bodily pain, somatic symptoms, and chronic medical morbidity) and a single-item measure for perceived overall health were studied in an extensive community-based sample of elderly persons (n = 5279). The results showed that: (1) the discriminative power of perceived overall health compared to domain-specific measures of health was moderate to large only at the fair/poor end of the perceived overall health spectrum; (2) a single-item measure of perceived overall health did not cover domain-specific measurements of health since only 41.8% of the variance in perceived overall health was explained by all domain-specific measures; and (3) the affective domains of functioning (psychological distress, mental health) were weakly related to perceived overall health. Bodily pain, chronic medical morbidity and, to a lesser extent, physical functioning were more strongly related to perceived overall health. These results were fairly consistent for men and women and for three age groups. We conclude that a global, single-item measure of perceived health and domain-specific health measures are not exchangeable in evaluation, survey, or epidemiological research.
[Show abstract][Hide abstract] ABSTRACT: To investigate to what extent differences in health status between respondents and drop-outs affected the associations between cardiovascular diseases and functional status and self-rated health in a population-based longitudinal health survey in elderly men.
During the 1993 survey of the Zutphen Elderly Study, a non-response survey was carried out. The prevalence of myocardial infarction and stroke, disabilities in basic activities of daily living (BADL) and mobility, and self-rated health were compared between non-respondents (n = 99) and respondents (n = 381). Associations between myocardial infarction and stroke on the one hand and functional status and self-rated health on the other were calculated for the total population and for the respondents to assess the amount of under- or overestimation of these associations.
The health of non-respondents was worse than that of respondents in terms of stroke, disabilities in BADL and mobility and self-rated health. Due to this selective non-response, the associations between cardiovascular diseases and functional status and self-rated health were biased. Although most of the associations were slightly overestimated, the most important bias was the underestimation by 57% of the association between stroke and disabilities in BADL [total population: odds ratios (OR) = 6.1, 95% confidence interval (CI) = 2.7-13.9; respondents only: OR = 2.6, CI = 0.7-9.9].
Selective non-response might lead to bias in the prevalence of disease, disabilities and self-rated health as well as in the associations between disease and functional status and self-rated health. The direction and magnitude of this bias varies according to type of disease and health outcome and is therefore difficult to predict. The need to minimize non-response and to investigate its implications is recommended in every study.
Age and Ageing 01/1998; 27(1):35-40. DOI:10.1093/ageing/27.1.35 · 3.11 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: 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.