Measuring outcomes in randomized prospective trials in palliative care

Northwestern University, Evanston, Illinois, United States
Journal of Pain and Symptom Management (Impact Factor: 2.74). 08/2007; 34(1 Suppl):S7-S19. DOI: 10.1016/j.jpainsymman.2007.04.004
Source: PubMed

ABSTRACT Palliative care aims to improve the quality of life of patients and their families and reduce suffering from life-threatening illness. In assessing palliative care efficacy, researchers must consider a broad range of potential outcomes, including those experienced by the patient's family/caregivers, clinicians, and the health care system. The purpose of this article is to summarize the discussions and recommendations of an Outcomes Working Group convened to advance the palliative care research agenda, particularly in the context of randomized controlled trials. These recommendations address the conceptualization of palliative care outcomes, sources of outcomes data, application of outcome measures in clinical trials, and the methodological challenges to outcome measurement in palliative care populations. As other fields have developed and refined methodological approaches that address their particular research needs, palliative care researchers must do the same to answer important clinical questions in rigorous and credible ways.

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    ABSTRACT: Context A major barrier to widening and sustaining palliative care service provision is the requirement for better selection and use of outcome measures. Service commissioning is increasingly based on patient, carer, and service outcomes as opposed to service activity. Objectives To generate recommendations and consensus for research in palliative and end-of-life care on the properties of the best outcome measures, enhancing the validity of proxy-reported data and optimal data collection time points. Methods An international expert “workshop” was convened and an online consensus survey was undertaken using the MORECare Transparent Expert Consultation to generate recommendations and level of agreement. We focused on three areas: 1) measurement properties, 2) use of proxies, and 3) measurement timing. Data analysis comprised descriptive analysis of aggregate scores and collation of narrative comments. Results There were 31 workshop attendees; 29 recommendations were included in the online survey, completed by 28 experts. The top three recommendations by area were the following: 1) the properties of the best outcome measures are responsive to change over time and capture clinically important data, 2) to enhance the validity of proxy data requires clear and specific guidelines to aid lay individuals' and/or professionals' completion of proxy measures, and 3) data collection time points need clear identification to establish a baseline. Conclusion Outcome measurement in palliative and end-of-life care requires the use of psychometrically robust measures that are clinically responsive, with defined data collection time points to establish a baseline and clear administration guidelines to complete proxy measures. To further the field requires clinical imperatives to more closely inform recommendations on outcome measurement.
    Journal of pain and symptom management 12/2013; 46(6):925–937. DOI:10.1016/j.jpainsymman.2013.01.010 · 2.74 Impact Factor
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    ABSTRACT: Background: Many patient-reported outcome measures have been developed in the past two decades, playing an increasingly important role in palliative care. However, their routine use in practice has been slow and difficult to implement. Aim: To systematically identify facilitators and barriers to the implementation of patient-reported outcome measures in different palliative care settings for routine practice, and to generate evidence-based recommendations, to inform the implementation process in clinical practice. Design: Systematic literature review and narrative synthesis. Data Sources: Medline, PsycInfo, Cumulative Index to Nursing and Allied Health Literature, Embase and British Nursing Index were systematically searched from 1985. Hand searching of reference lists for all included articles and relevant review articles was performed. Results: A total of 3863 articles were screened. Of these, 31 articles met the inclusion criteria. First, data were integrated in the main themes: facilitators, barriers and lessons learned. Second, each main theme was grouped into either five or six categories. Finally, recommendations for implementation on outcome measures at management, health-care professional and patient levels were generated for three different points in time: preparation, implementation and assessment/improvement. Conclusions: Successful implementation of patient-reported outcome measures should be tailored by identifying and addressing potential barriers according to setting. Having a coordinator throughout the implementation process seems to be key. Ongoing cognitive and emotional processes of each individual should be taken into consideration during changes. The educational component prior to the implementation is crucial. This could promote ownership and correct use of the measure by clinicians, potentially improving practice and the quality of care provided through patient-reported outcome measure data use in clinical decision-making.
    Palliative Medicine 06/2013; 28(2). DOI:10.1177/0269216313491619 · 2.85 Impact Factor
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    ABSTRACT: Professional organizations, consensus groups, and stakeholders are calling for better palliative care in acute care settings, particularly in ICUs. Our ability to deliver that care is dependent on the outcomes associated with palliative care in the ICU. This review provides a conceptual framework for these outcomes, discusses current and future challenges for work in this field, and advocates for better use of patient-centered outcomes in future studies. Previous studies of palliative care interventions in the ICU have used heterogeneous outcomes, conceptualized as: systems-related, content-related, clinician-related, or patient/family-related. Few outcomes were used in multiple studies and many studies had insufficient power and questionable generalizability and impact. Although nearly all previous studies incorporated family-related outcomes, not one incorporated patient-centered outcomes, such as health-related quality of life, patient symptom score, or consensus between patient goals and care provided. Delivery of palliative care in the ICU will be hampered until studies incorporate outcomes that are: responsive to and reflective of variations in care, and multi-faceted (with patient-centered components) to reflect the multi-dimensional nature of palliative care and the varied needs of different stakeholders.
    Current opinion in critical care 08/2013; 19(5). DOI:10.1097/MCC.0b013e328364d50f · 3.18 Impact Factor