PACE - Plans and Care Expectations - a study of people in the palliative phase of progressive cancer and non-cancer illnesses - Primary Care Unit

Title:	Plans and Care Expectations – a study of people in the palliative phase of progressive cancer and non-cancer illnesses
Principal research question:	To investigate the nature of the transition to Palliative and End of Life care in two contrasting illnesses, incurable lung cancer and advanced COPD, seeking the views of patient, their lay carers and health professionals concerning the appropriateness of a palliative care approach and conversations concerning the End of Life.The study is looking at the patients’ and supporters’ experiences as well as interviewing the patients’ GPs, community or specialist nurses. There will be Public and Patient Involvement (PPI) throughout the research.
Background:	This study of people in the palliative phase of progressive cancer and non-cancer illnesses, their lay and professional carers, investigates their views of:1) The existence and nature of their transition from chronic illness to Palliative and End of Life Care 2) Their care, support and information needs at this stage of illness 3) The aspects of care they regard as key markers of high quality care at this stage of illness
Methodology description:	1) Pilot study A pilot study will be undertaken with two lung cancer and two COPD patients in order to pilot the recruitment processes and further develop the interview schedules. Semi-structured interviews will pilot a schedule developed from issues listed below in order to develop the structure and content of interviews and identify the vocabulary used by participants. During the semi-structured interviews ‘Pictor’, a visual technique that helps participants reflect on their experiences will be used.2) Cross-sectional study This main phase is a cross-sectional interview study of lung cancer and COPD patients and their lay and professional carers investigating their perceptions of the transition to Palliative Care. The recruitment sequence will be as followsa) Lung cancer patient recruitment. Patients living in Cambridgeshire recently diagnosed with incurable lung cancer will be recruited through a hospital lung cancer service. Those not suitable for the potentially curative treatments of surgery or radical radiotherapy will be identified in lung cancer clinics and multidisciplinary team meetings. A maximum variety sample of patients with longer prognosis (ECOG Performance status 0 or 1) will be recruited, purposively sampling by age, sex, ethnicity, social deprivation (postcode) and GP practice variables. The patient and their nominated lay carer will be visited at home and recruited to the study and their GP informed of their participation. b) GP and community nurse recruitment. Lung cancer patients will be asked to nominate the GP and community nurse (District Nurse, Practice Nurse, Macmillan Nurse, Specialist Community Nurse, Community Matron, etc) most closely involved in their care, and the consent of these health professionals obtained to be interviewed themselves. c) COPD patient recruitment. The GP of each lung cancer patient will be asked to identify from their practice COPD Register one patient with advanced COPD and to approach them on behalf of the study team (two or more of the following criteria: FEV1 <=30%, long term oxygen therapy, MRC Breathlessness scale 5, one or more exacerbations / admissions in the past 12 months). 3) Longitudinal study A purposive sample of 8 lung cancer and 8 COPD patients will be approached for a second interview and asked if they are willing to fill in a diary about their experiences. 4) Discussion groups These will be held with participating GPs and community / specialist nurses before data analysis is complete, about the emergent issues for patient care and service development.
Sample group description:	a) 15 lung cancer patients and their lay carers b) 15 advanced COPD patients and their lay carers c) GPs and community nurses familiar with these patients.
Project organisation
Start date:	1st January 2010
End date:	31st December 2012
Contact person:	Mrs Clare Crang
Contact Details:	Primary Care Research Unit Institute of Public Health University Forvie Site, Robinson Way Cambridge Cambs CB2 0SR UK Telephone: (01223) 763887 Fax: 01223 762515 E-mail: cc316@medschl.cam.ac.uk
References and Publications