Palliative medicine
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Palliative medicine · Dec 2006
ReviewMethodological and structural challenges in palliative care research: how have we fared in the last decades?
The heterogeneity of the palliative care population represents challenges to research methodology, including study design, informed consent (and ethical issues in general), assessment and classification of symptoms and signs, as well as practical issues in the clinic. The aim of this report is to describe and examine the status of palliative care research in Europe by means of a survey and a literature review. Only one European country, the UK, has taken a national initiative to stimulate and promote palliative care research through the supportive and palliative care collaboratives (SUPAC) in 2005. ⋯ The literature review indicated that the majority of publications are surveys and descriptive/observational studies, and few randomised, controlled, studies were published. In conclusion, the quantity of research seems to be steadily increasing. There may be a need for larger multi-centre studies, and in order to perform such studies, national and international structures, encompassing research above the critical size, with a multi-disciplinary background including both basic scientists and clinicians is required.
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Research investigating the psychological distress of palliative care patients has contributed to our understanding of the needs and experiences of individuals approaching death. This paper aims to provide a brief review of such measurement of psychological distress in palliative care, focusing on established psychiatric and psychological research tools, and quantitative research methods. ⋯ There are important considerations in undertaking psychological research in palliative care, such as maintaining a balance between the methods and measurements that will address key research questions, and sensitivity to the range of physical and emotional demands facing individuals at the point of receiving palliative care. The clinical application of psychological and psychiatric research tools and methods can aid the detection of psychological distress, aid the thorough assessment of the psychological dimension of the patients' illness and care, aid the identification of individuals who would benefit from specific psychotherapeutic or pharmacologic interventions, and the evaluation of response to treatments.
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Palliative medicine · Dec 2006
Randomized Controlled TrialThe impact of conducting a regional palliative care clinical study.
End-of-life care must be informed by methodologically rigorous, high-quality research, but well-documented barriers make the conduct of palliative care clinical trials difficult. With careful consideration to study design and procedures, these barriers are surmountable. This paper discusses the approach used in a large scale, randomised, controlled trial of service-based interventions in a regional palliative care service in South Australia, and the impact of this trial on palliative care research more broadly, the changes to the service in which it was conducted, and on health policy beyond palliative care. ⋯ Other study design elements that facilitated this research included assessment of three interventions at one time, a dedicated recruitment role, a single clinical triage point, embedding data collection into routine clinical assessments, and meaningful outcome measures. Recruitment and retention of participants is possible if barriers are systematically identified and addressed. This study challenged and developed the research culture within our clinical team and subsequently translated into further research.
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The primary goal of palliative care is to optimize the quality of life (QOL) of people living with a life-threatening illness and that of their families. While there have been important advances in measurement of the QOL of palliative care patients, little attention has been paid to the QOL of their carers (family caregivers). To develop and deliver the most effective services to these carers, their QOL needs to be measured with acceptable and psychometrically sound instruments that have content validity. ⋯ QOLLTI-F is unique in that in measuring one person's QOL (the carer's) it includes their perception of the condition of another (the patient). This attests to the close relationship between the two. It is also unique in that its content is derived from a qualitative study asking carers what is important to their own QOL, rather than focusing on the changes or burdens related to caregiving. QOLLTI-F also has the advantage of being briefer than other carer QOL measures. It contains measures of seven different domains that are determinants of carer QOL, in addition to a summary score. All these measures are valid, reliable and responsive to change in QOL.
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Palliative medicine · Dec 2006
Towards using administrative databases to measure population-based indicators of quality of end-of-life care: testing the methodology.
This study is concerned with methods to measure population-based indicators of quality end-of-life care. Using a retrospective cohort approach, we assessed the feasibility, validity and reliability of using administrative databases to measure quality indicators of end-of-life care in two Canadian provinces. The study sample consisted of all females who died of breast cancer between 1 January 1998 and 31 December 2002, in Nova Scotia or Ontario, Canada. ⋯ An additional seven indicators in one province and three in the other province were partially measurable. Tests comparing administrative and chart data show a high level of agreement with inter-rater reliability, confirming consistency in the chart abstraction process. Using administrative data is an efficient, population-based method to monitor quality of care which can compliment other methods, such as qualitative and purposefully collected clinical data.