Work Package 1
The RAND /UCLA method is a systematic method for selecting quality indicators which combines best available scientific evidence with the collective judgement of expert stakeholders. The RAND/UCLA method includes the following stages
1. A systematic evidence review and development of a conceptual model [4 months] Candidate indicators will be identified from existing evidence sources including potential ‘read across’ evidence from day services for other patient groups such as older people and people with disabilities. This will result in a draft set of candidate indicators and a preliminary model relating these indicators to aspects of care and patient outcomes. Evidence summaries for each indicator and its relationship with quality of care / patient outcomes will be produced using the AIRE instrument
2.Panel reviews [3.5 months] Relevant organizations will be asked to nominate individuals from across the UK to sit on an expert panel. This panel will comprise of individuals representing all relevant stakeholders involved in the delivery of Palliative Care Day Services
Panellists will receive the evidence summaries, draft measures, ballots, and instructions. Lay summaries will be produced for patient members of the expert panel. During round 1, panel members rate the appropriateness of each indicator. during round 2, a face-to-face panel meeting will be held where panel members will receives a summary of the first-round ratings for each indicator, their rating relative to the distribution, and the analytic interpretation. After all opinions have been voiced for an indicator, each panelist is asked to rate the appropriateness of the quality indicator again. The RAND / UCLA method provides clear definitions and criteria for the calculation of ‘appropriateness’. Only measures that are judged appropriate will be included in the later stages of the project. Following this discussion a final stage will ask panelists to rate whether the related aspect of care is also ‘necessary’. This will provide an indication of indicators that are essential and others that could be considered supplementary
3. Operationalisation and risk adjustment [3 months] The most appropriate instruments / data for measuring the indicators will be selected by reviewing the research literature and the work of groups such as PRISMA, MoReCare and the EAPC taskforce on patient-reported outcome measurement in palliative care. Operationalisation of structural and process indicators (specifying what information should be collected, how it should be presented, analyzed and interpreted) will be informed by the expert panel discussions, the project advisory board, and existing evidence. In addition, risk adjustment will identify those patient-related and other factors which should be considered alongside QIs or where exclusions should be applied. A summary of the QIs, their operationalisation, and risk adjustment will be sent to the expert panels for comment.
4. Finalisation of specifications [1 month] Feedback from the expert panel will be incorporated into the quality framework and a final set of quality indicators produced, incorporating operationalisation and risk adjustment.
5. User documentation [1.5 months] A draft toolkit for use in practice will be produced – incorporating an instruction manual (what data to collect and from what source(s)), definitions, data collection forms (including questionnaires where appropriate), how to treat missing data, instructions on analysing and presenting results.
Work Package 2
‘Abstractors’ will be recruited from nursing staff working in Palliative Care Day Services. Each abstractor will be provided with training (0.5 day) by the researcher at the abstractor’s work site on the rationale and use of the toolkit. The abstractor will then be required to implement the toolkit to complete the indicators at their site for a small number of patients. Abstractors will be asked to provide feedback via data collection forms and a structured interview on the extent to which data associated with each indicator to determine:
Is data collected routinely, available, and accessible? Does data generation and/or collection represent a burden for patients and/or staff? Are the toolkit instructions clearly formulated for data collection, analysis and presentation?
In addition to the generation of indicators, the project will identify specific aspects of care where the evidence base is such that further research is needed or that analysis of cost-effectiveness is required