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Challenges in palliative care research; recruitment, attrition and compliance: experience from a randomized controlled trial

Jordhoy, M S; Kaasa, S; Fayers, P; Ovreness, T; Underland, G and Ahlner-Elmqvist, Marianne LU (1999) In Palliative Medicine 13(4). p.299-310
Abstract
Randomized controlled trials (RCTs) in palliative cancer care often experience methodological problems. In this paper we discuss issues of major concern, including recruitment, patient attrition and compliance, arising from an RCT that compared comprehensive palliative care to conventional care. The main criteria for trial entry were incurable malignant disease and a survival expectancy of between 2 and 9 months. Patients' health-related quality of life (HRQL), self-assessed by multi-item questionnaires, was a defined endpoint. The planned number of patients was successfully recruited, although the patients were referred late in the course of their disease so that follow-up tended to be short. Compliance in completing HRQL questionnaires... (More)
Randomized controlled trials (RCTs) in palliative cancer care often experience methodological problems. In this paper we discuss issues of major concern, including recruitment, patient attrition and compliance, arising from an RCT that compared comprehensive palliative care to conventional care. The main criteria for trial entry were incurable malignant disease and a survival expectancy of between 2 and 9 months. Patients' health-related quality of life (HRQL), self-assessed by multi-item questionnaires, was a defined endpoint. The planned number of patients was successfully recruited, although the patients were referred late in the course of their disease so that follow-up tended to be short. Compliance in completing HRQL questionnaires was good up to 1 month before the patient's death; but in the final weeks it was found to drop substantially. Based on our experience, recommendations are given for those planning similar research. Procedures for improving patient recruitment are suggested, stressing the need for local data management, repeated information to referral sources, extensive screening for potentially eligible patients and simple referral routines. Precise inclusion criteria, including prognostic factors other than physicians' estimates of life expectancy, should be used to ensure a sufficient follow-up period. For HRQL assessment, multi-item questionnaires can achieve excellent compliance up to 1 month before patients' death, but in order to evaluate the very final weeks of life we recommend the use of simpler methods. (Less)
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author
organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
clinical trials, neoplasms, palliative care, quality of life, research
in
Palliative Medicine
volume
13
issue
4
pages
299 - 310
publisher
SAGE Publications Inc.
external identifiers
  • pmid:10659099
  • scopus:0032784936
ISSN
1477-030X
DOI
10.1191/026921699668963873
language
English
LU publication?
yes
id
3745a76a-ceee-4e13-bedb-ae338ff6a3e2 (old id 1114459)
date added to LUP
2008-07-04 11:24:05
date last changed
2017-11-19 04:11:25
@article{3745a76a-ceee-4e13-bedb-ae338ff6a3e2,
  abstract     = {Randomized controlled trials (RCTs) in palliative cancer care often experience methodological problems. In this paper we discuss issues of major concern, including recruitment, patient attrition and compliance, arising from an RCT that compared comprehensive palliative care to conventional care. The main criteria for trial entry were incurable malignant disease and a survival expectancy of between 2 and 9 months. Patients' health-related quality of life (HRQL), self-assessed by multi-item questionnaires, was a defined endpoint. The planned number of patients was successfully recruited, although the patients were referred late in the course of their disease so that follow-up tended to be short. Compliance in completing HRQL questionnaires was good up to 1 month before the patient's death; but in the final weeks it was found to drop substantially. Based on our experience, recommendations are given for those planning similar research. Procedures for improving patient recruitment are suggested, stressing the need for local data management, repeated information to referral sources, extensive screening for potentially eligible patients and simple referral routines. Precise inclusion criteria, including prognostic factors other than physicians' estimates of life expectancy, should be used to ensure a sufficient follow-up period. For HRQL assessment, multi-item questionnaires can achieve excellent compliance up to 1 month before patients' death, but in order to evaluate the very final weeks of life we recommend the use of simpler methods.},
  author       = {Jordhoy, M S and Kaasa, S and Fayers, P and Ovreness, T and Underland, G and Ahlner-Elmqvist, Marianne},
  issn         = {1477-030X},
  keyword      = {clinical trials,neoplasms,palliative care,quality of life,research},
  language     = {eng},
  number       = {4},
  pages        = {299--310},
  publisher    = {SAGE Publications Inc.},
  series       = {Palliative Medicine},
  title        = {Challenges in palliative care research; recruitment, attrition and compliance: experience from a randomized controlled trial},
  url          = {http://dx.doi.org/10.1191/026921699668963873},
  volume       = {13},
  year         = {1999},
}