Challenges in palliative care research; recruitment, attrition and compliance: experience from a randomized controlled trial
(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)
Please use this url to cite or link to this publication:
https://lup.lub.lu.se/record/1114459
- author
- Jordhoy, M S ; Kaasa, S ; Fayers, P ; Ovreness, T ; Underland, G and Ahlner-Elmqvist, Marianne LU
- organization
- publishing date
- 1999
- 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
- 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
- 2016-04-01 16:35:51
- date last changed
- 2022-04-22 23:07:19
@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}},
keywords = {{clinical trials; neoplasms; palliative care; quality of life; research}},
language = {{eng}},
number = {{4}},
pages = {{299--310}},
publisher = {{SAGE Publications}},
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}},
doi = {{10.1191/026921699668963873}},
volume = {{13}},
year = {{1999}},
}