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      Unmet Needs of People with Severe Multiple Sclerosis and Their Carers: Qualitative Findings for a Home-Based Intervention

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          Abstract

          Background

          Few data on services for people with severe multiple sclerosis (MS) are available. The Palliative Network for Severely Affected Adults with MS in Italy (PeNSAMI) developed a home palliative care program for MS patients and carers, preceded by a literature review and qualitative study (here reported).

          Objective

          To identify unmet needs of people with severe MS living at home by qualitative research involving key stakeholders, and theorize broad areas of intervention to meet those needs.

          Method

          Data were collected from: at least 10 personal interviews with adults with severe MS (primary/secondary progressive, EDSS≥8.0); three focus group meetings (FGs) of carers of people with severe MS; and two FGs of health professionals (HPs). Grounded theory guided the analysis of interview and FG transcripts, from which the areas of intervention were theorized.

          Results

          Between October 2012 and May 2013, 22 MS patients, 30 carers and 18 HPs participated. Forty-eight needs themes were identified, grouped into 14 categories and four domains. Seven, highly interdependent intervention areas were theorized. Patients had difficulties expressing needs; experiences of burden and loneliness were prominent, chiefly in dysfunctional, less affluent families, and among parent carers. Needs differed across Italy with requirements for information and access to services highest in the South. All participants voiced a strong need for qualified personnel and care coordination in day-to-day home care. Personal hygiene emerged as crucial, as did the need for a supportive network and preservation of patient/carer roles within family and community.

          Conclusions

          Unmet needs transcended medical issues and embraced organizational and psychosocial themes, as well as health policies. The high interdependence of the seven intervention areas theorized is in line with the multifaceted approach of palliative care. At variance with typical palliative contexts, coping with disability rather than end-of-life was a major concern of patients and carers.

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          Most cited references16

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          Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers

          Background Extensive evidence shows that well over 50% of people prefer to be cared for and to die at home provided circumstances allow choice. Despite best efforts and policies, one-third or less of all deaths take place at home in many countries of the world. Objectives 1. To quantify the effect of home palliative care services for adult patients with advanced illness and their family caregivers on patients' odds of dying at home; 2. to examine the clinical effectiveness of home palliative care services on other outcomes for patients and their caregivers such as symptom control, quality of life, caregiver distress and satisfaction with care; 3. to compare the resource use and costs associated with these services; 4. to critically appraise and summarise the current evidence on cost-effectiveness. Search methods We searched 12 electronic databases up to November 2012. We checked the reference lists of all included studies, 49 relevant systematic reviews, four key textbooks and recent conference abstracts. We contacted 17 experts and researchers for unpublished data. Selection criteria We included randomised controlled trials (RCTs), controlled clinical trials (CCTs), controlled before and after studies (CBAs) and interrupted time series (ITSs) evaluating the impact of home palliative care services on outcomes for adults with advanced illness or their family caregivers, or both. Data collection and analysis One review author assessed the identified titles and abstracts. Two independent reviewers performed assessment of all potentially relevant studies, data extraction and assessment of methodological quality. We carried out meta-analysis where appropriate and calculated numbers needed to treat to benefit (NNTBs) for the primary outcome (death at home). Main results We identified 23 studies (16 RCTs, 6 of high quality), including 37,561 participants and 4042 family caregivers, largely with advanced cancer but also congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), HIV/AIDS and multiple sclerosis (MS), among other conditions. Meta-analysis showed increased odds of dying at home (odds ratio (OR) 2.21, 95% CI 1.31 to 3.71; Z = 2.98, P value = 0.003; Chi2 = 20.57, degrees of freedom (df) = 6, P value = 0.002; I2 = 71%; NNTB 5, 95% CI 3 to 14 (seven trials with 1222 participants, three of high quality)). In addition, narrative synthesis showed evidence of small but statistically significant beneficial effects of home palliative care services compared to usual care on reducing symptom burden for patients (three trials, two of high quality, and one CBA with 2107 participants) and of no effect on caregiver grief (three RCTs, two of high quality, and one CBA with 2113 caregivers). Evidence on cost-effectiveness (six studies) is inconclusive. Authors' conclusions The results provide clear and reliable evidence that home palliative care increases the chance of dying at home and reduces symptom burden in particular for patients with cancer, without impacting on caregiver grief. This justifies providing home palliative care for patients who wish to die at home. More work is needed to study cost-effectiveness especially for people with non-malignant conditions, assessing place of death and appropriate outcomes that are sensitive to change and valid in these populations, and to compare different models of home palliative care, in powered studies. PLAIN LANGUAGE SUMMARY Effectiveness and cost-effectiveness of home-based palliative care services for adults with advanced illness and their caregivers When faced with the prospect of dying with an advanced illness, the majority of people prefer to die at home, yet in many countries around the world they are most likely to die in hospital. We reviewed all known studies that evaluated home palliative care services, i.e. experienced home care teams of health professionals specialised in the control of a wide range of problems associated with advanced illness – physical, psychological, social, spiritual. We wanted to see how much of a difference these services make to people's chances of dying at home, but also to other important aspects for patients towards the end of life, such as symptoms (e.g. pain) and family distress. We also compared the impact on the costs with care. On the basis of 23 studies including 37,561 patients and 4042 family caregivers, we found that when someone with an advanced illness gets home palliative care, their chances of dying at home more than double. Home palliative care services also help reduce the symptom burden people may experience as a result of advanced illness, without increasing grief for family caregivers after the patient dies. In these circumstances, patients who wish to die at home should be offered home palliative care. There is still scope to improve home palliative care services and increase the benefits for patients and families without raising costs.
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            Is short-term palliative care cost-effective in multiple sclerosis? A randomized phase II trial.

            Palliative care is being advocated for noncancer patients but needs evidence of effectiveness and cost-effectiveness. We evaluated the cost-effectiveness of a new palliative care service for people with multiple sclerosis (MS). We used a randomized fast-track Phase II controlled trial. Patients in South East London who were severely affected by MS were referred by clinicians to the trial. After baseline interview, patients were randomly allocated to either a multiprofessional palliative care team (PCT) immediately (fast track) or the control care group who continued best usual care for three months and then were offered the PCT. Data were collected at baseline, 6, 12, 18, and 26 weeks on use of services, patient symptoms, other outcomes, and caregiver burden. Fifty-two patients were randomized: 25 fast track and 21 control patients completed the trial. There was a high level of disability, and mean Expanded Disability Status Scale score was 7.7 (median 8, standard deviation 1.0). At 12 weeks, caregiver burden was 4.47 points lower (95% confidence interval [CI]: 1.05-7.89) in the fast track compared to the control group. Mean service costs, including inpatient care and informal care, over the 0-12-week follow-up were pound1,789 lower for the fast-track group (bootstrapped 95% CI: - pound5,224 to pound1,902). There was a trend toward lower community costs in the fast-track group and no differences in costs to informal caregivers. The trial suggests that short-term palliative care for people severely affected by MS and their caregivers will be cost-effective and warrants further study. The fast-track trial design could be used to assess this.
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              Palliative care for people severely affected by multiple sclerosis: evaluation of a novel palliative care service.

              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.
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                Author and article information

                Contributors
                Role: Editor
                Journal
                PLoS One
                PLoS ONE
                plos
                plosone
                PLoS ONE
                Public Library of Science (San Francisco, USA )
                1932-6203
                2014
                6 October 2014
                : 9
                : 10
                : e109679
                Affiliations
                [1 ]Unit of Psychology, Foundation IRCCS Istituto Nazionale per la Cura dei Tumori, Milan, Italy
                [2 ]Department of Neuroscience, Imaging and Clinical Sciences, University “G. d'Annunzio” of Chieti-Pescara, Chieti, Italy
                [3 ]Multiple Sclerosis Unit, Foundation IRCCS S. Lucia Rehabilitation Hospital, Rome, Italy
                [4 ]Neurology Clinic, MS Center, University Hospital Policlinico Vittorio Emanuele, Catania, Italy
                [5 ]AISM Liguria Region Rehabilitation Service, Genoa, Italy
                [6 ]Unit of Neuroepidemiology, Foundation IRCCS Neurological Institute C. Besta, Milan, Italy
                [7 ]Unit of Neuroimmunology, Foundation IRCCS Neurological Institute C. Besta, Milan, Italy
                [8 ]Dept. of Therapeutic Research and Medicine Evaluation, Istituto Superiore di Sanità, Rome, Italy
                [9 ]Scientific Research Department, Italian Multiple Sclerosis Foundation, Genoa, Italy
                Brigham and Women's Hospital, Harvard Medical School, United States of America
                Author notes

                Competing Interests: I have read the journal's policy and the authors of this manuscript have the following competing interests: EP has received travel grants from Bayer Schering, Biogen Idec, Merck Serono, Novartis, Sanofi Aventis and Teva and also received travel and research grants from the Fondazione Italiana Sclerosi Multipla. PC has been a board member of Biogen-idec, received travel grants from Sanofi Aventis, Biogen Dompé AG and Merk Serono. AL has been a Bayer Schering, Biogen Idec, Merck Serono and Genzyme advisory board member. She received travel grants and honoraria from Bayer Schering, Biogen Idec, Merck Serono, Novartis, Sanofi Aventis and Teva and research grants from Bayer Schering, Biogen Idec, Merck Serono, Novartis, Sanofi Aventis and Teva. She has also received travel and research grants from the Associazione Italiana Sclerosi Multipla and was a consultant of “Fondazione Cesare Serono”. FP received honoraria for speaking activities from Bayer Schering, Biogen Idec, Merck Serono, Novartis, and Sanofi Aventis. He has served as advisory board member of the following companies: Bayer Schering, Biogen Idec, Merck Serono, and Novartis. MGG has received research funding from Merck Serono and consulting and speaking fees from Biogen Idec. AS has been a board member of Biogen Idec and Novartis, and has received speaker honoraria from Genzyme, Merck Serono and the Fondazione Serono. The authors confirm that this declaration does not alter the authors' adherence to all PLOS ONE policies on sharing data and materials.

                Conceived and designed the experiments: CB AG LLC LP PZ MAB AS. Performed the experiments: EB EP IR SC MG PC AL FP MGG LLC. Analyzed the data: CB EB. Wrote the paper: CB EB EP IR SC MG AG PC AL FP MGG LLC LP PZ MAB AS.

                ¶ Membership of the PeNSAMI Project is provided in the Acknowledgments.

                Article
                PONE-D-14-15534
                10.1371/journal.pone.0109679
                4186842
                25286321
                0dd1f4c1-6a34-49b1-a0ed-19a33b382534
                Copyright @ 2014

                This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

                History
                : 9 April 2014
                : 10 September 2014
                Page count
                Pages: 11
                Funding
                This study was supported by the Fondazione Italiana Sclerosi Multipla (FISM, www.aism.it, grant No. 2012/S/1 to AS). The funding sources had no role in study design, data collection, data analysis, data interpretation, or report writing.
                Categories
                Research Article
                Biology and Life Sciences
                Immunology
                Clinical Immunology
                Autoimmune Diseases
                Multiple Sclerosis
                Medicine and Health Sciences
                Health Care
                Health Care Providers
                Palliative Care
                Neurology
                Neurodegenerative Diseases
                Social Sciences
                Sociology
                Families and Family Members
                Custom metadata
                The authors confirm that all data underlying the findings are fully available without restriction. Raw data are not suitable for public deposition as they contain identifying human information. Data are available upon request from the corresponding author.

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                Uncategorized

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