What is important to measure in the last months and weeks of life?: A modified nominal group study.
BACKGROUND
Identifying the most important issues for palliative care patients and their families, and assessing whether services address these appropriately is important. Little is known about the views of United Kingdom service users and whether, and in what ways, they differ from those in the published literature from other countries, or from health professionals.


OBJECTIVE
To investigate what is important to measure at the end of life from the perspectives of United Kingdom patients, bereaved relatives and health care professionals.


METHODS
Ten focus groups, using a modified nominal group technique, with a total of 75 participants (10 patients, 35 professionals and 30 bereaved relatives) enabled issues participants thought important to measure at the end of life to be identified and prioritised using ratings and rankings. Thematic analysis of the data was conducted to enable cross-group comparison.


RESULTS
Seven themes were identified as most important to participants: symptom management; choice and control; dignity; quality of life; preparation; relationships; and co-ordination and continuity. Bereaved relatives and professionals emphasised symptom management, relationships and quality of life, whilst patients prioritised issues around preparation.


CONCLUSIONS
The study was successful in identifying aspects of end of life care that are important to patients, families and health professionals in the United Kingdom. Although participants were not representative of the wider population in the United Kingdom, the degree of concordance with published studies from outside the United Kingdom increases the credibility of the findings. Quality assurance initiatives need to ensure that they act on information such as this on users' priorities. Further research is needed to test out the findings in other settings in the United Kingdom, to build on the findings about different participants' views and to identify similarities and variations between countries.
Aspinal
Fiona
F
Department of Politics, University of York, Heslington, York YO10 5DD,UK. fa112@york.ac.uk
Hughes
Rhidian
R
Dunckley
Maria
M
Addington-Hall
Julia
J
D000203:Activities of Daily Living; D001291:Attitude of Health Personnel; D001294:Attitude to Health; D001601:Bereavement; D002755:Choice Behavior; D003142:Communication; D003266:Continuity of Patient Care / Q000458:organization & administration; D005190:Family / Q000523:psychology*; D017144:Focus Groups; D006297:Health Services Accessibility; D006801:Humans; D007398:Interpersonal Relations; D020380:Needs Assessment / Q000458:organization & administration*; D015404:Nursing Methodology Research; D010166:Palliative Care / Q000458:organization & administration / Q000523:psychology*; D036301:Qualitative Research; D011785:Quality Assurance, Health Care / Q000458:organization & administration; D011788:Quality of Life; D012107:Research Design; D035844:Researcher-Subject Relations; D012297:Right to Die; D019452:Terminally Ill / Q000523:psychology*; D006113:United Kingdom