Outcome measures in survivorship

Outcome measures in survivorship

Outcome measures in survivorship (#36)

Irene Higginson ¹

King's College London, London, United Kingdom

Patient-centred outcome measures (PCOMs) are used in cancer and in survivorship and palliative care for research, education, clinical audit, monitoring and directly in clinical practice. The use of outcome measures in research is quite well established, although there remain questions about the best timing of measurement in studies, and ensuring measures are able to capture the changes important to patients, families and clinicians.

In clinical care outcome measures can be used to screen for problems, such as symptoms, improve communication, monitor change and provide evidence of benefit of the service. Recording information at one point in time (such as first assessment) gives an understanding of the needs of patients and families. Repeated assessments enable change to be monitored.

This presentation will consider the issues in using measures during cancer care and into survivorship, using as a case example our work in developing and validating a clinical measure for use in myeloma – the MY-POS. It will consider how the views of patients and families changed content and how this and other measures may be integrated into practice to screen for needs, improve care and communication. It will give examples of how the Patient Outcome Scale (a version of POS) has been revised for use at different time points and in different ways. Finally it will consider the issues of implementing measures into clinical practice to improve care.

Evans CJ, Benalia H, Preston NJ, Grande G, Gysels M, Short V, Daveson BA, Bausewein C, Todd C, Higginson IJ; MORECare. The selection and use of outcome measures in palliative and end-of-life care research: the MORECare International Consensus Workshop. J Pain Symptom Manage. 2013 Dec;46(6):925-37. doi: 10.1016/j.jpainsymman.2013.01.010. Epub 2013 Apr 28
Etkind SN, Daveson BA, Kwok W, Witt J, Bausewein C, Higginson IJ, Murtagh FE. Capture, Transfer, and Feedback of Patient-Centered Outcomes Data in Palliative Care Populations: Does It Make a Difference? A Systematic Review. J Pain Symptom Manage. 2014 Aug 15. pii: S0885-3924(14)00413-8. doi: 10.1016/j.jpainsymman.2014.07.010
Osborne TR1, Ramsenthaler C, Siegert RJ, Edmonds PM, Schey SA, Higginson IJ. What issues matter most to people with multiple myeloma and how well are we measuring them? A systematic review of quality of life tools. Eur J Haematol. 2012 Dec;89(6):437-57. doi: 10.1111/ejh.12012. Epub 2012 Oct 26
Higginson IJ, Simon ST, Benalia H, Downing J, Daveson BA, Harding R, Bausewein C; PRISMA. Which questions of two commonly used multidimensional palliative care patient reported outcome measures are most useful? Results from the European and African PRISMA survey. Postgrad Med J. 2012 Aug;88(1042):451-7. PMID:22822226[PubMed - indexed for MEDLINE]
Antunes B, Harding R, Higginson IJ; EUROIMPACT Implementing patient-reported outcome measures in palliative care clinical practice: a systematic review of facilitators and barriers. Palliat Med. 2014 Feb;28(2):158-75. doi: 10.1177/0269216313491619. Epub 2013 Jun 25

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Authors contributing to this presentation.

Higginson, I

rene Higginson qualified in medicine from Nottingham University and has worked in wide ranging medical and university positions, including radiotherapy and oncology, in-patient and home hospice care, the Department of Health (England), and various universities. She is dual-trained in palliative medicine and public health medicine. She has developed and validated two outcome measures both freely available and used widely in palliative care: the Support Team Assessment Schedule and the Palliative care Outcome Scale (see www.pos-pal.org). She is Director of the Cicely Saunders Institute, at King’s College London, the world’s first purpose-built Institute of palliative care, integrating research, education, clinical services and support and information. Prof. Higginson is an NIHR Senior Investigator and was in 2013 awarded Fellowship of the Academy of Medical Sciences, for her contribution to the field. She has several active research programmes, leads the MSc, Diploma and Certificate in Palliative Care, supervises several PhD students and is active in teaching. Prof. Higginson has published over 400 articles in peer-reviewed journals, plus several books; her research interests and publications are in the following areas: quality of life and outcome measurements, evaluation of palliative care especially of new services and interventions, epidemiology, clinical audit, effectiveness, psychosocial care, symptom assessment, breathlessness, cachexia/anorexia, and elderly care. She plays an active role in the clinical service, including on-call. Professor Higginson was awarded an OBE for services to medicine in the Queen's Birthday Honours list of 2008.

Outcome measures in survivorship (#36)

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