Reporting on disability vs other symptoms 1.07% 104 disability 340 cachexia 532 breathlessness 1451 fatigue 3615 nausea 37.69% 3655 pain “ advanced cancer” and Hits Search terms Medline 1966 – present (carried out 02/07/08)
What's important to patients? Receiving adequate symptom management Co-ordination and continuity of care Avoiding inappropriate prolongation of dying A sense of control Relieving one’s burden upon others Strengthening relationships with loved ones Having an opportunity to say goodbye and bring closure Singer et al. (1999) Quality End-of-Life Care. Patients' Perspectives. JAMA 281:163-168. Heyland et al. (2006) What matters most in end-of-life care: perceptions of seriously ill patients and their family members. CMAJ 174 (5): 627-633. Aspinal et al. (2006) What is important to measure in the last months and weeks of life? A modified nominal group study. Int J Nurs Stud 43(4): 393-403
Disability is a problem. It receives inadequate attention. How can we manage it better?
What are the consequences of disability for cancer and palliative care patients (and their carers)? What interventions can support patients’ ability to make the most of life? (What interventions can help patients to manage disability?) How do we define and specify these interventions so that we can deliver them? What’s the best way of delivering the interventions? What outcomes are meaningful to measure – reduction in symptoms (eg fatigue)? Improvement in quality of life? Independence? Social participation? And how do we measure them? What is the feasibility of doing this kind of research with this population of patients? What do we need to know?