Abstract
BackgroundPalliative care has been proposed to help meet the needs of patients who suffer progressive non-cancer conditions but there have been few evaluations of service development initiatives. We report here a novel protocol for the evaluation of a new palliative care service in this context.Methods/DesignUsing the MRC Framework for the Evaluation of Complex Interventions we modelled a new palliative care and neurology service for patients severely affected by Multiple Sclerosis (MS). We conducted qualitative interviews with patients, families and staff, plus a literature review to model and pilot the service. Then we designed a delayed intervention randomised controlled trial to test its effectiveness as part of phase II of the MRC framework. Inclusion criteria for the trial were patients identified by referring clinicians as having unresolved symptoms or psychological concerns. Referrers were advised to use a score of greater than 8 on the Expanded Disability Scale was a benchmark. Consenting patients newly referred to the new service were randomised to either receive the palliative care service immediately (fast-track) or after a 12-week wait (standard best practice). Face to face interviews were conducted at baseline (before intervention), and at 4–6, 10–12 (before intervention for the standard-practice group), 16–18 and 22–24 weeks with patients and their carers using standard questionnaires to assess symptoms, palliative care outcomes, function, service use and open comments. Ethics committee approval was granted separately for the qualitative phase and then for the trial.DiscussionWe publish the protocol trial here, to allow methods to be reviewed in advance of publication of the results. The MRC Framework for the Evaluation of Complex Interventions was helpful in both the design of the service, methods for evaluation in convincing staff and the ethics committee to accept the trial. The research will provide valuable information on the effects of palliative care among non-cancer patients and a method to evaluate palliative care in this context.
Highlights
Palliative care has been proposed to help meet the needs of patients who suffer progressive non-cancer conditions but there have been few evaluations of service development initiatives
Design The development and evaluation of a new palliative care service for people severely affected by Multiple Sclerosis (MS) was conducted using the Medical Research Council (MRC) Framework for the Evaluation of Complex Interventions[21,22]
Results from phase I and service staff recruitment The results of phase I identified five main concerns for patients and families; loss and change, support needs, information needs, symptom control, and issues concerned with the delivery of care including co-ordination, continuity, and problems with inpatient care[35]
Summary
Palliative care has been proposed to help meet the needs of patients who suffer progressive non-cancer conditions but there have been few evaluations of service development initiatives. Palliative care services have traditionally focussed on caring for patients with cancer. The symptoms experienced in far advanced heart failure, respiratory failure, progressive neurological conditions, HIV/AIDS and renal failure have much in common with those of cancer, suggesting that palliative care services might have a role[3,4]. Thomas and McMahon proposed a model in progressive non-cancer focussed on end of life care[5,6], whereas Skilbeck and Payne suggested specialist palliative care should be viewed as a service for those with complex symptoms or problems, especially at the end of life[7]. Whatever model is developed[8,9], palliative care services in non-cancer need development and tested in robust studies
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