Multiple sclerosis results in both physical and psychological disability but some patients have needs that are not adequately met by existing services. Our objective was to explore whether a new palliative care service improved outcomes for people severely affected by multiple sclerosis. A delayed intervention randomized controlled trial was undertaken with multiple sclerosis patients deemed by staff to have palliative care needs. The intervention was a multiprofessional palliative care team assessment and follow-up. The intervention group was offered the team immediately (fast track, FI); the control group continued best standard care and then offered the team after 3 months (standard intervention, SI). The main outcome measures were: patient reported issues using the Palliative Care Outcome Scale and Multiple Sclerosis Impact Scale at 12 weeks and caregiver burden using the Zarit Burden Inventory. Sixty-nine people were referred to the service; 52 consented or were eligible to be randomized (26 to the FI and 26 to the SI groups). At 12 weeks people in the FI group had an improvement (mean change —1.0) in the total score of 5 key symptoms whereas there was deterioration in the SI group (mean change 1.1, F = 4.75, p = 0.035). There was no difference in the change in general Palliative Care Outcome Scale or Multiple Sclerosis Impact Scale scores. There was an improvement in caregiver burden in the FI group and a deterioration in the SI group (F = 7.60, p = 0.013). Involvement with the palliative care service appeared to positively affect some key symptoms and reduced informal caregiver burden.

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.

Although there is increasing interest in measuring the quality of life (QoL) of people with multiple sclerosis (MS), relatively little is known about the issues of importance to people severely affected by MS. In the first of two systematic reviews, we searched the literature to identify measures that have been used to assess health-related QoL in people with MS, and described their measurement properties in terms of validity, reliability, responsiveness to change, and appropriateness for QoL assessment in people severely affected by MS. In the second review, we identified care domains important to people with MS, by reviewing survey, focus group and interview studies involving people with MS and/or their caregivers. Forty-six studies evaluating 12 disease-specific and ten generic QoL measures for patients, and one disease-specific measure for caregivers, satisfied all inclusion criteria. Sixteen focus group or interview studies and 51 questionnaire-based studies evaluated domains of care important to people with MS, and seven qualitative and 11 questionnaire-based studies assessed domains of care important to their caregivers. From these studies, we identified 15 domains of care important to people with MS and 12 domains important to caregivers. QoL measures differed markedly in their coverage of these care domains. Moreover, each measure fulfilled some but not all criteria of validity, reliability, responsiveness, and appropriateness. Further work is needed to clarify the domains of care relevant to people with severe MS, and to measure health-related QoL in this population.

This study aimed to explore important issues for people severely affected by multiple sclerosis (MS). Individual interviews were conducted with 23 people with MS (PwMS) and 17 informal carers, the data relating to 32 PwMS. Information was obtained about 19 females and 13 males, with a mean age of 55, median time from diagnosis was 14.5 years, and physical disabilities ranged from mild to severe, although fifteen patients had severe disabilities. Twenty-six of the 32 individuals were unable to walk, 24 were catheterised, and 18 had considerably impaired or no upper limb function. Personal issues in relation to loss and change, particularly in terms of losses of or changes in physical abilities, including maintaining mobility, independence, relationships and social role were raised commonly in response to an open-ended question about what issues were important in living with MS. Coping with MS requires individuals to deal with the losses and changes brought about by their illness. Our study suggests that even patients who have had MS for many years and are now severely affected continue to experience loss and change. We recommend that attention be given to emotional support which specifically addresses three main areas of dealing with loss and change for people that are severely affected - physical issues, independence and relationships. Palliative care providers may have expertise in managing loss that could be useful for these patients in partnership with neurological services.

Members of the Quality of Life Group (QLG) of the European Organisation for Research and Treatment of Cancer (EORTC) are developing a stand-alone functional measure of spiritual well being for palliative care patients, which will have both a clinical and a measurement application. This article discusses data from a literature review, conducted at two time points as part of the development process of this instrument. The review identified 29 existing measures of issues relating to patients’ spirituality or spiritual well being. Twenty two are stand-alone measures of which 15 can be categorised as substantive (investigating the substance of respondents’ beliefs) and seven as functional (exploring the function those beliefs serve). However, perhaps owing to the lack of consensus concerning spirituality or spiritual well being, the functional measures all have different (although sometimes overlapping) dimensions. In addition, they were all developed in a single cultural context (the United States), often with predominantly Christian participants, and most were not developed with palliative care patients. None is, therefore, entirely suitable for use with palliative care patients in the United Kingdom or continental Europe.

Background: Shared decision-making is a key element of person-centred care and promoted as the favoured model in preference-sensitive decision-making. Limitations to implementation have been observed, and barriers and limitations, both generally and in the palliative setting, have been highlighted. More knowledge about the process of shared decision-making in palliative cancer care would assist in addressing these limitations. Aim: To identify and synthesise qualitative data on how people with cancer, informal carers and healthcare professionals experience and perceive shared decision-making in palliative cancer care. Design: A systematic review and metasynthesis of qualitative studies. We analysed data using inductive thematic analysis. Data sources: We searched five electronic databases (MEDLINE, EMBASE, PsycINFO, CINAHL and Scopus) from inception until June 2023, supplemented by backward searches. Results: We identified and included 23 studies, reported in 26 papers. Our analysis produced four analytical themes; (1) Overwhelming situation of ‘no choice’, (2) Processes vary depending on the timings and nature of the decisions involved, (3) Patient-physician dyad is central to decision-making, with surrounding support and (4) Level of involvement depends on interactions between individuals and systems. Conclusion: Shared decision-making in palliative cancer care is a complex process of many decisions in a challenging, multifaceted and evolving situation where equipoise and choice are limited. Implications for practice: Implementing shared decision-making in clinical practice requires (1) clarifying conceptual confusion, (2) including members of the interprofessional team in the shared decision-making process and (3) adapting the approach to the ambiguous, existential situations which arise in palliative cancer care.