Palliative Care Outcome Measures Research Articles

Quality of life in palliative care: principles and practice.

In healthcare, most researchers and clinicians agree that quality of life (QOL) is related to symptoms, functioning, psychological and social wellbeing, and probably to a lesser extent to meaning and fulfillment. This multidimensional health-oriented concept has been named health-related quality of life (HRQOL). However, during end-of-life care spirituality and existential issues become more prominent, as well as family members' perception of quality of care. Outcome measures in palliative care require constructs that reflect the specific goals of palliative care, such as improving QOL before death, symptom control, family support and satisfaction, as well as patients' perceptions of 'purpose' and 'meaning of life'. It is generally recommended that internationally developed and validated patient-rated multidimensional questionnaires should be used when assessing HRQOL in research. However, 'multidimensionality', with often more than 10 possible outcomes, is a threat both to statistical analysis and clinical interpretation of data. Preferentially, a more limited number of outcomes based upon the research question(s) should be defined prior to data collection in the study protocol. The researcher needs to carefully evaluate the content of the questionnaire, in addition to other properties, such as the validity and reliability, before the final decision is made with regards to which instrument to use in a given study.

Measuring Quality of Care in Palliative Care Services

Professor Irene J. Higginson, B.Med.Sci., B.M.B.S., F.F.P.H.M., Ph.D., is a palliative medicine physician who has been researching audit and outcome measures in palliative care for more than 15 years. For the past 3 years she has been based at King’s College School of Medicine and Dentistry and St. Christopher’s Hospice in London, England. In this interview with Innovations associate editor Anna L. Romer, she discusses the purpose of audit and the evolution of two quality of care measures she has designed: the Support Team Assessment Schedule (STAS) and more recently the Palliative Care Outcome Scale (POS). The STAS includes nine core items: Pain Control, Other Symptom Control, Patient Anxiety, Family Anxiety, Patient Insight, Family Insight, Communication between Patient and Family, Communication between Professionals, and Communication Professional to Patient and Family. Staff members grade each of these domains using a forced-choice severity scale of zero to four. The instrument lists the item, for example, “Pain Control” and a few words to cue the person using the form (i.e., “Effect of his/her pain on the patient”). The POS is a new tool that represents an evolution in practice. A key difference between the two tools is that the POS has two parallel instruments—one for a staff member to complete and the other for the patient to complete. In terms of content, the POS includes many of the same domains, but frames the questions with more specificity. The POS staff questionnaire has 10 items and each includes a specific question with a clear time period (the past 3 days). This tool unpacks broad terms such as “communication” into particular questions, for example, about how much information is given, or whether patients have been able to share feelings. The final two items in the POS inquire about how much time has been wasted on appointments and on whether practical matters resulting from the illness have been addressed. In addition to the forced-choice items, there is an open-ended question asking staff or the patient to list the main problems over the past 3 days. Staff also complete a performance status question. In the following interview, Dr. Higginson describes the evolution of the two measures and reflects on the interface between quality of care (i.e., a measure of the care palliative care teams provide based on their own assessments of patient needs and experience) and quality of life (a term grounded in patients’ subjective experience). Dr. Higginson details her hopes for the POS, a tool that attempts to address this gap between health care professionals’ perspectives and patients’ perspectives. This interview is excerpted from a thematic issue, “Measuring Quality in Palliative Care,” Volume 2, Number 1, 2000 of the online journal Innovations in End-of-Life Care at http://www.edc.org/lastacts/.

Conceptual Models and the Outcomes of Caring

Conceptual models and the taxonomies associated with them are inherent tools of goal-directed activity. Conceptual models partition reality, discerning differences within a phenomenologic continuum; a process that is a fundamental requisite for measurement. This paper presents theoretical observations regarding the influence of conceptual models on goal-directed endeavors and explores specific implications for outcome measurement in palliative care. The dominant model of end-of-life care is the problem-based model of adult medicine. In clinical orientation, hospice and palliative care bear strong similarities to a pediatric and family medical model for early childhood care. This essay examines salient features of a conceptual model for palliative care that draws on a life-cycle or developmental model of human experience in critical transitions and explores application of this model to palliative care.

Outcome measures in palliative care for advanced cancer patients: a review.

Information generated using outcome measures to measure the effectiveness of palliative care interventions is potentially invaluable. Depending on the measurement tool employed the results can be used to monitor clinical care, carry out comparative research, provide audit data or inform purchasing decisions. However, the data collected can only ever be as good as the method used to obtain them. This review aimed to systematically identify and examine outcome measures that have been used, or proposed for use in the clinical audit of palliative care of patients with advanced cancer. Database searches were performed using MEDLINE (1991-1995), CANCERLIT (1991-1995), Healthplan (1985-1995), and 'Oncolink' on the internet. Further measures were located with the assistance of other professionals working in palliative care. The criteria for the inclusion and assessment of measures were a measure assessing more than one domain and a target population of advanced disease or palliative care Forty-one measures were identified, 12 of which satisfied the inclusion criteria. These contained between five and 56 items and covered aspects of physical, psychological and spiritual domains. Each measure meets some but not all of the objectives of measurement in palliative care, and fulfils some but not all of our criteria for validity, reliability, responsiveness and appropriateness.