Bella Vivat | PubMed Health

PubMed2006

Study protocol: delayed intervention randomised controlled trial within the Medical Research Council (MRC) Framework to assess the effectiveness of a new palliative care service.

BACKGROUND: 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. We report here a novel protocol for the evaluation of a new palliative care service in this context. METHODS/DESIGN: Using 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. DISCUSSION: We 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.

Journal Article↗

PubMed2006

Advanced breast cancer patients' perceptions of decision making for palliative chemotherapy.

PURPOSE: To examine advanced breast cancer patients' perceptions of the key decision-making consultation for palliative chemotherapy. PATIENTS AND METHODS: One hundred two women with advanced breast cancer, who were offered palliative chemotherapy, participated in a study-specific semistructured interview examining perceptions of the information they had received and their involvement in the decision-making process. One hundred seventeen interviews included 70 in relation to first-line chemotherapy and 47 in relation to second-line chemotherapy (15 patients were interviewed in relation to both first- and second-line chemotherapy). RESULTS: Eighty-six percent of patient interviews (n = 101) reported patient satisfaction with the information they received, and 91% (n = 106) reported satisfaction with the decision-making process. Factors most influential in decisions to accept chemotherapy were the possibility of controlling the tumor (45%, n = 53 of patient interviews) and providing hope (33%, n = 28 of patient interviews; 19%, n = 13 being offered first-line chemotherapy v 43%, n = 20 being offered second-line chemotherapy; P = .006). Thirty-eight percent of patient interviews (n = 44) reported the patient as taking an active role in the decision-making process (33%, n = 23 at first-line chemotherapy v 43%, n = 20 at second-line chemotherapy; P = .06). CONCLUSION: Women offered second-line chemotherapy were more likely to undergo chemotherapy because of the hope it offers and were more likely to take an active role in that decision compared with women who were offered first-line chemotherapy. Compassionate and honest communication about prognosis and likelihood of benefit from treatment may help to close the gap between hope and expectation and enable patients to make fully informed decisions about palliative chemotherapy.

Adult↗