This work has also been published in Firth et al.81
This work in workstream 2 (‘models of specialist palliative care’) was extended from that proposed in our original bid to meet objective 3: to understand the criteria which distinguish different models of palliative care, to help inform how a casemix classification and per-patient funding models can best be utilised across different models of specialist palliative care.
The originally planned work needed to be expanded to understand and describe the different models of palliative care, which were rapidly evolving in a changing healthcare environment (especially in community settings). This change was fully supported by the Programme Steering Committee and PPI group.
Aim
We aimed to understand the criteria which characterise and distinguish different models of palliative care.81
Methods
Design
We developed a mixed-methods study with (1) semistructured interviews to identify criteria for models of care, (2) a two-round Delphi study to rank/refine these criteria and (3) structured interviews to test the acceptability and feasibility of these criteria.81
Semistructured interviews
A rapid scoping review was conducted to identify literature related to models of palliative care. Original papers and reviews were examined for possible criteria which could help define models of specialist palliative care and a topic guide was created covering the 28 preliminary criteria identified from this literature. Semistructured interviews using a pre-specified topic guide were conducted with a range of palliative care service leads across organisations.81
Delphi study
We selected Delphi survey methods for this second stage because it enabled us to present potential criteria derived from the semistructured interviews to all respondents, allowed them time to absorb this complex information at their own pace and enabled us to sample a wide range of views in a way that gave all opinions equal weight. A two-round Delphi survey of UK clinical, policy or PPI leads were invited from the Outcome Assessment and Complexity Collaborative network (a multidisciplinary network of professionals engaged in the implementation of outcome measures in specialist palliative care in England), and the national C-CHANGE sites. Participants were advised that we were aiming to establish a list of key criteria to describe and compare models of care. The Delphi survey was conducted to refine the criteria from the semistructured interviews, identify any additional criteria, achieve consensus on how each criterion was defined and rank the criteria in terms of importance.81 CREDES (Conducting and REporting DElphi Studies in palliative care) guidelines were followed.82
An online survey was developed using Bristol Online Survey (BOS) v1.0 Bristol, UK.83 The survey was piloted for face validity prior to going live.
In the first Delphi round, panel members were presented with a list of 34 criteria. Participants were asked to state whether or not they agreed with the inclusion of each criterion as an important criterion for describing and comparing models of specialist palliative care (answering ‘yes’, ‘no’ or ‘don’t know’) and their reasons for this. They were also asked to comment on the phrasing and clarity of the criterion, as well as the answer options listed. Finally, participants were asked to suggest any additional criteria they thought should be included.81
Each criterion was retained if at least 75% participants answered ‘yes’. Free-text comments were analysed using content analysis and used to refine and expand the set of criteria.
In round 2 of the Delphi process, participants received anonymised feedback from round 1 and the amended list of criteria for further refinement and ranking. Participants were asked to rate the importance of each criterion for characterising and comparing different models of care on a five-point Likert scale (1 = not at all important; 2 = not very important; 3 = important; 4 = very important; 5 = extremely important). In addition to the rating scales, participants were also given the opportunity to add additional free-text comments to help refine criteria and answer options.81
Responses were analysed to capture both central tendency (median rating) and dispersion [interquartile range (IQR)]. Consensus was deemed to have been reached for criteria that received aggregated responses with an IQR of ≤ 1 and a median of 4 or 5. Both methods are considered to offer robust measurements for Delphi surveys.84,85 Criteria reaching this consensus were then included in the final set.
Ranking responses were collated and analysed using IBM SPSS Statistics version 22. Free-text responses underwent content analysis and were used to refine the criteria and response options.
Structured interviews to test for acceptability and feasibility of the criteria
The criteria developed from the Delphi survey component were then tested with clinical leads from three different specialist palliative care settings (hospice inpatient care, hospital advisory teams and community-based care) using structured interviews. Participants consented to be interviewed and audio-recorded. The data from these interviews were classified according to the criteria used, and entered into Microsoft Excel® (Microsoft Corporation, Redmond, WA, USA) to identify whether or not the criteria could discriminate between services.81
Ethics approval
Prior ethics approval for all three components was gained from the King’s College London REC (LRS-15/16–2449).
Results
Semistructured interviews
Semistructured interviews were conducted with 14 service leads from eight organisations, discussing 12 settings of care (five hospice inpatient units, two hospital advisory teams and five community teams).
An early finding was that the clinical leads struggled to know at which level within the organisation to describe their models of care.81 It was often confusing when an organisation covered multiple settings of care (i.e. hospice inpatient, community, hospital inpatient and day services) and also provided multiple services within each setting, which often overlapped. For example, a hospice may have inpatient hospice, home care and ambulatory settings. Within any one of these settings, multiple services or teams were often operating. Within the day services there may be a physiotherapy clinic, a lymphoedema service and a day service, all operating with different models of care.
After all interviews were completed, out of the 28 criteria in the topic guide, 11 were not reported as useful and were removed; 17 criteria were refined; and a further 17 criteria were created. This resulted in 34 criteria to take forward to the Delphi survey.81
Delphi survey
A total of 190 participants were invited to take part in the Delphi survey. Of the 190 clinical, policy and PPI leads contacted, 54 agreed to participate (response rate 28.4%).
Results of Delphi round 1
Out of thirty-four criteria, six were removed due to not reaching the 75% consensus rate, and one removed due to poor comprehension. Three new criteria were added:
- How many referrals are accepted and seen annually by this service/team? (to reflect the size of service)
- Does this service/team accept patient or family self-referrals? (to reflect the approach to self-referral)
- Who undertakes the first assessment? (to reflect whether the model of care was doctor-led, nurse-led or another kind of model).
The out-of-hours criteria were heavily refined to improve comprehension and four new criteria relating to ‘out-of-hours’ were created. This resulted in a refined list of 34 criteria.81
Results of Delphi round 2
Thirty participants (out of 54 in round 1) completed round 2 (60% response rate). In round 2, the 34 revised criteria from round 1 were ranked and rated, and criteria not meeting the predetermined consensus level were excluded. Sixteen criteria reached consensus (see Box 1).
Structured interviews
Interviews were conducted with 21 service leads from 19 different services (six hospice inpatient, four hospital advisory and nine community settings). The responses to each criterion were compared to see if the criteria could distinguish and discriminate effectively between services. A further four criteria relating to context were also added (see Box 1); these were reported by the clinical leads as providing important context for the practical application of the criteria. These four contextual criteria were the purpose of the team, who funds/manages the team, the ability to self-refer and the discharging of patients.81