Elsbeth Voogt

Information needs of patients with incurable cancer

GoalsThe aims of this study were to describe to what extent cancer patients with incurable cancer report to have been informed about disease-related topics and how they evaluate the quality of the information giving.Patients and methodsOne hundred and twenty-eight patients participated in our study within 2 months after having had a diagnosis of incurable cancer. They filled out a questionnaire and were interviewed personally. We assessed the level of information, information needs and demographic factors, and we registered the type and duration of the cancer, cancer therapy, other types of received care and contacts with health care professionals. Furthermore, we assessed patients’ appreciation of the information giving by their health care professionals.Main resultsThe majority of the patients said to have been informed about treatment options, side effects of their treatment, physical symptoms, where to get help, helpful devices, and diet, whereas less than half of the patients were informed about psychosocial care, euthanasia, and complementary care. Of all patients, 39% felt a need for additional information about topics such as physical symptoms, diet, euthanasia, and alternative or complementary care, whereas 19% would have appreciated extra written information. Most patients (78–88%) were satisfied with the information giving by the clinical specialist, oncology nurses, and non-specialised nurses, but only 63% evaluated the information giving by general practitioners as good.ConclusionWe conclude that most patients feel sufficiently informed about important disease-specific issues and are satisfied with the information giving by health care professionals. Nevertheless, a considerable number of patients appreciate additional information.

Changes in health-related quality of life of men with prostate cancer 3 months after diagnosis: the role of psychosocial factors and comparisment with benign prostate hyperplasia patients

The objective of the pilot study is to measure the changes in health-related quality of life (HRQOL, general and prostate specific) 3 months after the disease has been diagnosed in men with prostate cancer. The results are compared with benign prostate hyperplasia (BPH) patients. Also the influence of psychosocial factors (distress, coping and social support) on the experienced changes in health-related quality of life is studied for both patient groups. The sample consists of 61 patients who filled in the questionnaire before the diagnosis was know to them and after 3 months (38 benign prostate hyperplasia and 23 prostate cancer patients). The measures consist of: quality of life, micturation symptoms, sexual functioning, coping style, psychological distress, life events, social support, social desirability, and health behavior. The results show a decrease in quality of life for prostate cancer patient after three moments, while the quality of life measure for BPH patients are stable over time. For both patient groups, the psychosocial factors do not change after 3 months. The psychosocial factors contribute only marginal to the changes in quality of life. Conclusions are drawn concerning the need and the content of psychosocial support and education for prostate cancer patients.

Clinical decision-making at the end of life: the role of the patient’s wish

Information about medical decision-making in the last stage of life and the wishes of terminally ill patients is scarce. At two hospital departments, we observed 16 multidisciplinary meetings and recorded 110 discussions concerning 74 patients. Thirty-three of these discussions concerned either starting or forgoing potentially life-prolonging therapy or applying potentially life-shortening medical interventions. The wishes of the patients were considered in 15 of these discussions. In 6 of these 15 discussions, the patients wish was unknown. In five discussions the decision was postponed to enable discussions with the patients. Potentially life-shortening decisions were never made if patients were known to disagree. No decisions about physician-assisted death were made. The study shows that medical end-of-life decisions are commonly shared between the involved caregivers and the patients.

The first general practitioner hospital in The Netherlands: towards a new form of integrated care?

Objective To describe the types of patients admitted to the first Dutch general practitioner (GP) hospital, their health-related quality of life and its substitute function. Design A prospective observational study. Setting The remaining 20-bed ward of a former district general hospital west of Amsterdam; a region with 62 000 inhabitants and 26 GPs. Subjects All patients admitted during the 12 months between 1 June 1999 and 1 June 2000. Main outcome measures Patients’ health-related quality of life (Medical Outcome Study 36-item Short Form Health Survey, Groningen Activities Restriction Scale), GPs assessments of severity of illness (DUSOI/WONCA Severity of Illness Checklist) and alternative modes of care. Results In total, 218 admissions were recorded divided into 3 bed categories: GP beds (n=131), rehabilitation beds (n=62) and nursing home beds (n=25). The mean age of all patients was 76 years. Main reasons for admission were immobilization due to trauma at home (GP beds), rehabilitation from surgery (rehabilitation beds) and stroke (nursing home beds). Overall, patients showed a poor health-related quality of life on admission. If the GP beds had not been available, the GPs estimated that the admissions would have been almost equally divided among home care, nursing home and hospital care. The severity of the diagnosis on admission of the ‘hospital-care group’ appeared to be significantly higher than the other care groups. Conclusion The GP hospital appears to provide a valuable alternative to home care, nursing home care and hospital care, especially for elderly patients with a poor health-related quality of life who are in need of short medical and nursing care.