1.07%104disability

340cachexia

532breathlessness

1451fatigue

3615nausea

37.69%3655pain

“advanced cancer” and

HitsSearch terms

Medline 1966 – present (carried out 02/07/08)

Receiving adequate symptom managementReceiving adequate symptom management

Co-ordination and continuity of care Co-ordination and continuity of care

Avoiding inappropriate prolongation of dying Avoiding inappropriate prolongation of dying

A sense of controlA sense of control

Relieving one’s burden upon othersRelieving one’s burden upon others

Strengthening relationships with loved onesStrengthening relationships with loved ones

Having an opportunity to say goodbye and bring closure Having an opportunity to say goodbye and bring closure

Singer Singer et al. et al. (1999) Quality End-of-Life Care. Patients' Perspectives. (1999) Quality End-of-Life Care. Patients' Perspectives. JAMAJAMA 281:163-168. 281:163-168.

Heyland Heyland et al. et al. (2006) What matters most in end-of-life care: perceptions of seriously ill patients and their (2006) What matters most in end-of-life care: perceptions of seriously ill patients and their family members. family members. CMAJCMAJ 174 (5): 627-633. 174 (5): 627-633.

Aspinal Aspinal et al. et al. (2006) What is important to measure in the last months and weeks of life? A modified nominal (2006) What is important to measure in the last months and weeks of life? A modified nominal group study. group study. Int J Nurs StudInt J Nurs Stud 43(4): 393-403 43(4): 393-403

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?