The 39 item Parkinson's disease questionnaire (PDQ-39) is the most widely used patient reported rating scale in Parkinson's disease. However, several fundamental measurement assumptions necessary for confident use and interpretation of the eight PDQ-39 scales have not been fully addressed.
Postal survey PDQ-39 data from 202 people with Parkinson's disease (54% men; mean age 70 years) were analysed regarding psychometric properties using traditional and Rasch measurement methods.
Data quality was good (mean missing item responses, 2%) and there was general support for the legitimacy of summing items within scales without weighting or standardisation. Score reliabilities were adequate (Cronbach's alpha 0.72-0.95; test-retest 0.76-0.93). The validity of the current grouping of items into scales was not supported by scaling success rates (mean 56.2%), or factor and Rasch analyses. All scales represented more health problems than that experienced by the sample (mean floor effect 15%) and showed compromised score precision towards the less severe end.
Our results provide general support for the acceptability and reliability of the PDQ-39. However, they also demonstrate limitations that have implications for the use of the PDQ-39 in clinical research. The grouping of items into scales appears overly complex and the meaning of scale scores is unclear, which hampers their interpretation. Suboptimal targeting limits measurement precision and, therefore, probably also responsiveness. These observations have implications for the role of the PDQ-39 in clinical trials and evidence based medicine. PDQ-39 derived endpoints should be interpreted and selected cautiously, particularly regarding small but clinically important effects among people with less severe problems.
Help-seeking and service utilization depends on the patients' interpretation of their illness and treatment needs. Worry, denial of illness, need for treatment and need for hospitalization in first-time admitted patients was studied.
New patients in two mental hospitals were consecutively recruited. Three hundred and thirty-four satisfied the inclusion criteria and 251 gave informed consent. One hundred and ninety-six had complete datasets (56% of those eligible).
Demography was recorded with the Minimal Basic Dataset by Ruud et al. (1993). Experiences of hospitalisation were measured with the Patient's Experience of Hospitalisation Questionnaire by Carskey et al. (1992). MINI was used for diagnosing and SCL-90-R by Derogatis (1997) for subjective symptoms. Standard multiple regressions were performed with the PEH subscales (Denial, Worry, Need for treatment and Need for hospitalisation) as dependents and demography, diagnosis and SCL-90-R subscales as explanatory variables.
(a) Psychoticism and the diagnosis of schizophrenia were associated with little worrying, denial of illness, of treatment needs and of need for hospitalisation. (b) Anxiety and affective disorders were related to worries, acknowledgement of illness, need for treatment and for hospitalisation.
In contrast to patients with mainly anxiety and affective disorders, psychotic patient tended to deny illness-related worries, that they had an illness and that they needed treatment and hospitalisation. An affective disorder together with suicidal thoughts (not attempts) was a strong drive towards hospital admission.
The purpose of the study is to analyse medicine behaviour seen from the user's point of view. The study intends to generate ideas to specify topics of problems and to try out a combination of qualitative research methods. The practitioners and four asthmatic patients attached to a health centre in Billund, Denmark, were interviewed. The patients kept a diary based on topics, the notes of which were elaborated by weekly telephone interviews. In a final interview all participants evaluated the course of the study. The combination of qualitative methods has been very suitable to provide the perspective of the user. The results of the study question the ideal picture of the patient as a passive user of medicine. The main trends show that: the users develop different strategies to evaluate medication therapy; it has negative consequences to the patient when medication is changed regardless of patient experience; the therapy improves when the doctor draws on the experience of the patient. The study contributes to the present, sparse knowledge about the consciously acting user of medicine and indicates the importance of incorporating the user's experience and life situation in the health care system's handling of health problems.
Present-day society has produced changes in family living patterns and conditions and this has resulted in new stressors and health problems. Most children and adolescents with chronic diseases and disabilities, who were previously cared for at hospitals and institutions for long periods, are now integrated in society and they are expected to live a normal life in the conditions that currently prevail. The number of young people with long-term illnesses/disability has increased worldwide during the last decades. There is lack of studies relating to the way young people regard their daily lives and factors that are important for their well-being. The aim of this study was to describe the meaning of feeling good in daily life in adolescents living with a long-term illness or disability. Eight boys and seven girls, aged between 12 and 19 years, with different conditions of long-term illness or disability, participated in the study. Tape-recorded interviews were conducted between the years 2003-2004 and the data were analysed using content analysis. The results revealed that the adolescents with long-term illness generally experienced well-being like everybody else. Three themes were found to be important in order to feel good: 'a feeling of acceptance of illness/disability as a natural part of life', 'a feeling of support' and 'a feeling of personal growth'. This study concludes that adolescents with long-term illness or disabilities experience well-being when they are allowed to prepare for living a normal life integrated in society.
In recent years, the notion of individual responsibility for one's health has been introduced into Swedish medico-political debate. Formerly expressed as a recommendation, it has now taken on the form of expectations. In a Swedish context, this shift from collective to individual responsibility is novel because it implies a break with well-established welfare state practice of comprehensive care for their citizens. Using a systems-theoretical approach, we interpret this shift of expectations as a political solution to the problem of legitimate allocation of scarce resources. A more inclusive medical conception of illness has facilitated the introduction of many new diagnoses that, in turn, have lead to a strong increase in claims for medical treatment and for compensation. This semantic change in medicine aggravates the budgetary situation of the welfare state. The political solution lies in a reorientation of the expectations the medical system can have on citizens as well as a shift of the expectations regarding the rights and obligations citizens can have on the medical system. Individuals are increasingly expected to live healthy lifestyles and to avoid hazardous habits. If they do not live up to these expectations, they have to face low prioritisation or denial of treatment.
The study explored changes in the health of aging workers from 1981 to 1992.
Municipal workers [age 55 to 69 (mean 61.6) years in 1992] who filled out questionnaires in both 1981 and 1992 (N = 4534) were studied. The changes in disease prevalence and perceived health were tested with Pearson's chi-square independence test. Improvement and decline in perceived health were analyzed by logistic regression models.
In 1992, significantly more diseases were reported than in 1981; the musculoskeletal disease rate rose from 38% in 1981 to 53% in 1992 for the women and from 35% to 49% for the men and the cardiovascular disease rate rose from 15% in 1981 to 28% in 1992 for the women and from 19% to 37% for the men. The age differences diminished during the follow-up. Self-assessed health improved in all the age groups among both those still working in 1992 and those retired. The association between illnesses and perceived health changed during the follow-up, 11% of those with no diseases experiencing their health as good in 1981 and over 40% in 1992. The most important factors explaining the improvement appeared to be a low number of physical illnesses and the absence of cardiovascular and musculoskeletal disease. Nonphysical work, frequent physical exercise, and satisfaction with life situation were also significant contributors to good perceived health.
The improvement in perceived health during the follow-up may mean that older people have lower criteria for good perceived health than younger people do. The associations between self-assessed health and the presence of disease need further study.
A concise portrait of HIV and AIDS within the Aboriginal community is difficult to present. Just as there are different customs and traditions among tribes, so are there different ways by which this issue is being addressed. The response to HIV/AIDS in the Aboriginal community is the process of moving from an individual or personal perspective to an immediate and extended family approach through the community, nation or society, and finally to the greater picture, Mother Earth. We don't necessarily move through in this order, rather we go back and forth as the need arises. When we deal with HIV or AIDS, it is important to view how this will affect our whole life: physical, mental, emotional and spiritual aspects of ourselves as well as financial, psychosocial and other dimensions. The teachings and study of children, youth, adults and elders are also discussed. We recognize the work we do in this area now will be a tool for survival in the future.
BACKGROUND: Studies have revealed low adherence to guidelines for treatment of diabetes and cardiovascular risk factors. OBJECTIVE: To explore GPs' experiences regarding treatment practice in type 2 diabetes with specific focus on the prevention of cardiovascular disease. METHODS: Fourteen experienced GPs from nine health care centres with group practices were interviewed in focus groups. The interviews were digitally recorded, transcribed verbatim and analysed by qualitative content analysis. RESULTS: The overall theme was 'dilemmas' in GPs' treatment practice for type 2 diabetes patients. Five main dilemma categories were identified. First, the GPs were hesitant about labelling someone who feels healthy as ill. Second, regarding communicating a diabetes diagnosis and its consequences; should the patient be frightened or comforted? Third, the GPs experienced uncertainty in their role; were they to take responsibility for the care or not? Fourth, the GPs expressed a conflict between lifestyle changes and drug treatment. Fifth, the GPs described difficulties in integrating science into reality. CONCLUSIONS: The five dilemmas in the GPs' approach to diabetes patients and the treatment of their cardiovascular risk were related to the GPs' professional role and communication with the patient. To consider these dilemmas in educational efforts is probably essential to achieve improved diabetes care and guideline adherence.
Although alcohol and drug problems are prevalent in the population at large and among patients in general hospitals, they have not been a major concern of consultation-liaison psychiatry. A setting in which all psychiatric consultations are directed to such problems, the Clinical Institute of the Addiction Research Foundation, is described, and parameters of its consultation experience are explored. It is suggested that dealing with alcohol and drug problems should become an integral aspect of consultation-liaison psychiatry. Such a development may prove to be especially fruitful in teaching a comprehensive approach to patient care.
The Alumni Program is a novel approach to the continuing care and preventive treatment of clients with "chronic" mental illness. This approach demands a different conceptualization of outpatient psychiatric intervention. The infectious disease model has been deliberately replaced with a chronic illness model that more accurately reflects the course and natural history of psychiatric illness. The Alumni Program is similar to the approach employed with other chronic medical conditions like arthritis, asthma, or diabetes. The program has complementary roles for both specialty psychiatric clinicians and family practitioners. In addition, the program empowers clients and their families to play a key role in their own ongoing adaptation and adjustment to chronic illness while striving for optimal wellness.
