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

Abstract

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.

Evaluating the Quality of Dying and Death

“…This is an important topic of research and should include examination of circumstances surrounding death, the context of care-giving, and the priorities of caregivers and providers themselves that have been examined in prior studies and are the subject of continuing inquiries. 22,42,60,61 The reliability of reports obtained many months after death have not been examined, and evaluation of the time interval is an important part of the research agenda for measuring and improving the dying experience. 8 Finally, a cautionary note is in order that patient preferences about dying and death may conflict subtly or strongly with family members, loved ones, and professional caregivers.…”

“…34 We searched the literature and selected studies of dying patients that addressed the conceptual domains or used measures to assess quality of life or quality of dying. 5,20,[35][36][37][38][39][40][41][42][43][44][45][46][47][48][49] Concepts and domains from these measures were identified and listed for possible inclusion into the conceptual model and operational definition.…”

Effect of Palliative Drug Therapy on Quality of life in Advanced Head and Neck Cancer Patients

“…But it greatly increases the cost of therapy. Assessing outcomes in palliative care is difficult [10]. QOL was one main parameter assessed in our patients as an outcome measure with pain cited as the key component of QOL [11].…”

Feasibility of quality of life assessment in patients with upper gastrointestinal tract cancer

“…Detailed information about specific problems during palliative treatment is also important to ensure that care is targeted appropriately. Other QOL questionnaires designed specifically for palliative care may include existential well being and spiritual domains, but there are no single measures that cover physical, psychological and spiritual domains in a format that will provide sufficient and reliable information (Hearn and Higginson, 1997). In addition, few measures include an assessment of dysphagia, which is an important symptom to assess in patients with cancer of the upper gastrointestinal tract.…”