PubMed Health⌕ Search

PubMed · 11602381

Palliative care research.

Abstract

Most of the research in palliative medicine is of a descriptive nature. Clinical practice is based upon clinical experience rather than upon research. The level of appropriate research reduces the chance for improvement of palliative care. Ethical and methodological obstacles seem to be prominent in palliative care research. The Declaration of Helsinki is generally accepted as an ethical code of practice for clinical research and it also applies to palliative care. In order to obtain reliable data, standardisation of data collection is needed. Improvement of quality of life is the primary endpoint in most studies in palliative care. The existing validated quality of life instruments such as the European Organization for Research and Treatment of Cancer (EORTC) quality of life (QLQ)-C30 can be used until the patient is too sick to complete the questionnaire. New approaches are needed and must be developed for the dying patients. Palliative care research needs proper funding; specific programmes supporting research on a European level are needed. The European Association for Palliative Care (EAPC) is capable of conducting and coordinating collaborative research in palliative care on a European level.

Explore related subjects

Keep this discovery

Explore connections, maps & timelines

BibTeXRIS

S Kaasa, F De Conno. 2001. Palliative care research.. https://doi.org/10.1016/s0959-8049(01)00260-x

Cite the original work for its findings. Save a collection to share your selection of sources.

KEEP EXPLORING

Related citations

Recurrence risk to offspring in extended multiplex schizophrenia pedigrees from a Pacific Island isolate.

Genetic transmission plays a major role in the pathogenesis of schizophrenia. Family, twin, and adoption studies have consistently shown that risks in relatives are many times greater than the general population risk of approximately 1%. McGue, Gottesman, and Rao (1983; Am J Hum Genet 35:1161-1178) calculated risk estimates of 12.8% for offspring and 3.5% for nieces/nephews of schizophrenia patients based on a large data set of Western European families. The present study evaluated corresponding risk levels in Palau, an isolated population in Micronesia where the prevalence of narrowly (broadly) defined schizophrenia is 1.99% (2.67%) and cases cluster in extended pedigrees, 20 of which contain 80% of affected individuals. We hypothesized that offspring in these extended families would have a higher risk for schizophrenia than offspring in smaller schizophrenia pedigrees from more genetically heterogeneous populations. RDC diagnostic data based on complete ascertainment of cases and their families covering the past two generations were used to quantify empirical recurrence risks in the offspring and nieces/nephews of Palauan schizophrenia patients. Risks to 1st- and 2nd-degree offspring were approximately double the rates found in the smaller Western European families: 23.4% in the offspring of an affected parent, 6.4% in offspring with one affected aunt/uncle, and 15.0% in offspring with two or more affected aunts/uncles. Recurrence rates in offspring of an affected parent were 1.6 times higher in males (27.9%) than in females (17.7%). The high risk levels we found in Palauan offspring reflect the elevated population prevalence, strong familial aggregation, and multi-lineal transmission pattern of schizophrenia in Palau.

Europe↗