Predicting non-adherence in patients with familial hypercholesterolemia.

PURPOSE: Familial hypercholesterolemia (FH) is an autosomal dominant disorder associated with a high risk of premature coronary heart disease (CHD). CHD prevention consists of lifestyle changes combined with lifelong statin treatment. Good adherence to statins reduces the risk of events substantially. This study was designed to identify determinants of non-adherence and to develop a model predicting non-adherence. METHODS: A single centre survey included all consecutive heterozygous FH patients above age 18 years, who were treated by a specialized team in the outpatient clinic of a university hospital in The Netherlands between 2008 and 2009. In addition to clinical data, patients completed a questionnaire concerning medication adherence. RESULTS: We analyzed 321 patients (169 women) with a statin prescription whose mean age was 46 ± 14 years (± S.D.), and 13 % of the patients had CHD. The untreated mean total cholesterol was 10 ± 2.3 mmol/l. On average, patients were ten years on cholesterol-lowering therapy (range 1-29 years). Adherence was reported by 89 % of the patients (> 90 % adherence). Non-adherence was associated with younger age (OR = 10.64, 95 % CI 2.86-39.68), high total cholesterol level during prescription (OR = 4.29, 95 % CI 1.86-9.89) and a relatively low untreated total cholesterol level (OR = 3.94 95 % CI 1.39-11.14). A prediction model based on these three determinants had a c-index of 0.78 and a calibration with P = 0.88. CONCLUSION: Based on three independent determinants, a prediction model is developed to identify non-adherent FH patients. This model needs to be tested in future prospective research. It might be a first step in improving statin adherence in this extremely high risk group.

The role of nurses in euthanasia and physician-assisted suicide in The Netherlands.

BACKGROUND: Issues concerning legislation and regulation with respect to the role of nurses in euthanasia and physician-assisted suicide gave the Minister for Health reason to commission a study of the role of nurses in medical end-of-life decisions in hospitals, home care and nursing homes. AIM: This paper reports the findings of a study of the role of nurses in euthanasia and physician-assisted suicide, conducted as part of a study of the role of nurses in medical end-of-life decisions. The findings for hospitals, home care and nursing homes are described and compared. METHOD: A questionnaire was sent to 1509 nurses, employed in 73 hospitals, 55 home care organisations and 63 nursing homes. 1179 responses (78.1%) were suitable for analysis. The questionnaire was pilot-tested among 106 nurses, with a response rate of 85%. RESULTS: In 37.0% of cases, the nurse was the first person with whom patients discussed their request for euthanasia or physician-assisted suicide. Consultation between physicians and nurses during the decision-making process took place quite often in hospitals (78.8%) and nursing homes (81.3%) and less frequently in home care situations (41.2%). In some cases (12.2%), nurses administered the euthanatics. CONCLUSIONS: The results show substantial differences between the intramural sector (hospitals and nursing homes) and the extramural sector (home care), which are probably linked to the organisational structure of the institutions. Consultation between physicians and nurses during the decision-making process needs improvement, particularly in home care. Some nurses had administered euthanatics, although this task is by law exclusively reserved to physicians.

Euthanasia and assisted suicide in Dutch hospitals: the role of nurses.

AIM: To report a study on the role of nurses in euthanasia and physician-assisted suicide in hospitals, conducted as part of a wider study on the role of nurses in medical end-of-life decisions. BACKGROUND: Issues concerning legislation and regulation with respect to the role of nurses in euthanasia and physician-assisted suicide gave the Dutch Minister for Health reason to commission a study on the role of nurses in medical end-of-life decisions in hospitals, homecare and nursing homes. METHOD: A questionnaire was sent in 2003 to 692 nurses employed in 73 hospital locations. The response suitable for analysis was from 532 (76.9%) nurses. Data were quantitatively analysed using spss version 11.5 for Windows. RESULTS: In almost half of the cases (45.1%), the nurse was the first with whom patients discussed their request for euthanasia or physician-assisted suicide. Consultations between physicians and nurses quite often took place (78.8%). In several cases (15.4%), nurses themselves administered the euthanatics with or without a physician. It is not self-evident that hospitals have guidelines concerning euthanasia/physician-assisted suicide. CONCLUSIONS: In the decision-making process, the consultation between the physician and the nurse needs improvement. In administering the euthanatics, physicians should take responsibility and should not leave these actions to nurses. Guidelines may play an important role to improve the collaboration between physicians and nurses and to prevent procedural, ethical and legal misunderstandings. RELEVANCE TO CLINICAL PRACTICE: Nurses in clinical practice are often closely involved in the last stage of a person's life. Consequently, they are often confronted with caring for patients requesting euthanasia or physician-assisted suicide. The results provide relevant information and may help nurses in defining their role in euthanasia and physician-assisted suicide, especially in case these practices should become legalised.

Euthanasia and physician-assisted suicide in the Dutch homecare sector: the role of the district nurse.

AIM: This paper is a report of the findings of a study into the role of district nurses in euthanasia and physician-assisted suicide in homecare organizations, conducted as part of a study into the role of nurses in medical end-of-life decisions. BACKGROUND: Issues concerning legislation and regulation with respect to the role of nurses in euthanasia and physician-assisted suicide gave the Minister for Health reason to commission a study into the role of nurses in medical end-of-life decisions in hospitals, nursing homes and homecare organizations. This is the first quantitative study from the perspective of nurses. Previous quantitative studies were conducted under physicians and information on the role of nurses was obtained indirectly. METHOD: A questionnaire was sent in 2003 to 500 district nurses employed in 55 homecare organizations. The absolute response rate was 86.0% and 81.6% (408) could be used for analysis. RESULTS: In 22.3% of 278 cases, the district nurse was the first with whom patients discussed their request for euthanasia or physician-assisted suicide. In about half (49.8%) of 267 cases nurses were not involved in the general practitioner's decision-making process, and in only 13.3% of 264 cases, did they attend the administration of the lethal drugs. District nurses had provided some degree of aftercare to the surviving relatives in 80.3% of 264 cases. CONCLUSION: Collaboration between general practitioners and district nurses needs improvement, particularly in relation to decision-making. Our Dutch data could help nurses in other countries to define their (future) role in euthanasia and physician-assisted suicide.