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- Jordhoy, M S, et al.
(författare)
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Challenges in palliative care research; recruitment, attrition and compliance: experience from a randomized controlled trial
- 1999
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Ingår i: Palliative Medicine. - : SAGE Publications. - 1477-030X .- 0269-2163. ; 13:4, s. 299-310
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Tidskriftsartikel (refereegranskat)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.
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- Sahlberg-Blom, Eva, et al.
(författare)
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The last month of life : continuity, care site and place of death
- 1998
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Ingår i: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 12:4, s. 287-296
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Tidskriftsartikel (refereegranskat)abstract
- A hospice ward was opened in 1991 at the Örebro MedicalCentre Hospital (ÖMCH) in Sweden. Shortly afterwards, aresearch project was started, which aimed to describe differentaspects of the final period of life of a group of cancer patients.This exploratory study is part of this project and aims to assesscontinuity in the site of care for a group of severely ill cancerpatients during the final stages of their lives, and their placeof death within different cultures of care.This prospective study involved 56 adults with cancer who hadbeen admitted to six specialized departments at ÖMCH. Demographicand diagnostic data, documentation of when the patients changedfrom one care form to another, as well as place of death wereobtained. The analysis of continuity in terms of care site involvedcare-oriented cultures (hospice ward, hospital-based home care,primary care-based home care and nursing home) and cure-orientedcultures (acute hospital wards).Considered as a group, the patients spent one-third of theirtime at home during their final month of life, with or withoutformal caregivers. For individual patients, however, there weregreat variations with regard to continuity of care site andcare form. A pattern was found for the type of cancer the patientshad and where they were during their final month. Ten patientsdied in their own homes, and of the 46 who died in an institution,approximately the same number died in a care-oriented cultureas in a cure-oriented culture.
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