Palliative care interventions for people with multiple sclerosis.
Ontology highlight
ABSTRACT:
SUBMITTER: Latorraca CO
PROVIDER: S-EPMC6803560 | biostudies-literature | 2019 Oct
REPOSITORIES: biostudies-literature
Publications
Palliative care interventions for people with multiple sclerosis.
Latorraca Carolina Oc CO Martimbianco Ana Luiza C ALC Pachito Daniela V DV Torloni Maria Regina MR Pacheco Rafael L RL Pereira Juliana Gomes JG Riera Rachel R
The Cochrane database of systematic reviews 20191022
<h4>Background</h4>People with multiple sclerosis (MS) have complex symptoms and different types of needs. These demands include how to manage the burden of physical disability as well as how to organise daily life, restructure social roles in the family and at work, preserve personal identity and community roles, keep self-sufficiency in personal care, and how to be part of an integrated care network. Palliative care teams are trained to keep open full and competent lines of communication about ...[more]
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Project description:Background and Purpose: Patients with severe, progressive multiple sclerosis (MS) have complex physical and psychosocial needs, typically over several years. Few treatment options are available to prevent or delay further clinical worsening in this population. The objective was to develop an evidence-based clinical practice guideline for the palliative care of patients with severe, progressive MS. Methods: This guideline was developed using the Grading of Recommendations Assessment, Development and Evaluation methodology. Formulation of the clinical questions was performed in the Patients-Intervention-Comparator-Outcome format, involving patients, carers and healthcare professionals (HPs). No uniform definition of severe MS exists: in this guideline, constant bilateral support required to walk 20 m without resting (Expanded Disability Status Scale score >6.0) or higher disability is referred to. When evidence was lacking for this population, recommendations were formulated using indirect evidence or good practice statements were devised. Results: Ten clinical questions were formulated. They encompassed general and specialist palliative care, advance care planning, discussing with HPs the patient's wish to hasten death, symptom management, multidisciplinary rehabilitation, interventions for caregivers and interventions for HPs. A total of 34 recommendations (33 weak, 1 strong) and seven good practice statements were devised. Conclusions: The provision of home-based palliative care (either general or specialist) is recommended with weak strength for patients with severe, progressive MS. Further research on the integration of palliative care and MS care is needed. Areas that currently lack evidence of efficacy in this population include advance care planning, the management of symptoms such as fatigue and mood problems, and interventions for caregivers and HPs.
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Project description:BackgroundThe European Association for Palliative Care White Paper defined optimal palliative care in dementia based on evidence and expert consensus. Yet, we know little on how to achieve this for people with dementia living and dying at home.AimsTo examine evidence on home palliative care interventions in dementia, in terms of their effectiveness on end-of-life care outcomes, factors influencing implementation, the extent to which they address the European Association for Palliative Care palliative care domains and evidence gaps.DesignA systematic review of home palliative care interventions in dementia.Data sourcesThe review adhered to the PRISMA guidelines and the protocol was registered with PROSPERO (CRD42018093607). We searched four electronic databases up to April 2018 (PubMed, Scopus, Cochrane library and CINAHL) and conducted lateral searches.ResultsWe retrieved eight relevant studies, none of which was of high quality. The evidence, albeit of generally weak quality, showed the potential benefits of the interventions in improving end-of-life care outcomes, for example, behavioural disturbances. The interventions most commonly focused on optimal symptom management, continuity of care and psychosocial support. Other European Association for Palliative Care domains identified as important in palliative care for people with dementia, for example, prognostication of dying or avoidance of burdensome interventions were under-reported. No direct evidence on facilitators and barriers to implementation was found.ConclusionsThe review highlights the paucity of high-quality dementia-specific research in this area and recommends key areas for future work, for example, the need for process evaluation to identify facilitators and barriers to implementing interventions.
| S-EPMC6620864 | biostudies-literature
Project description:BackgroundEvidence on the efficacy of palliative care in persons with severe multiple sclerosis (MS) is scarce.ObjectiveTo assess the efficacy of a home-based palliative approach (HPA) for adults with severe MS and their carers.MethodsAdults with severe MS-carer dyads were assigned (2:1 ratio) to either HPA or usual care (UC). At each center, a multi-professional team delivered the 6-month intervention. A blind examiner assessed dyads at baseline, 3 months, and 6 months. Primary outcome measures were Palliative care Outcome Scale-Symptoms-MS (POS-S-MS) and Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW, not assessed in severely cognitively compromised patients).ResultsOf 78 dyads randomized, 76 (50 HPA, 26 UC) were analyzed. Symptom burden (POS-S-MS) significantly reduced in HPA group compared to UC ( p = 0.047). Effect size was 0.20 at 3 months and 0.32 at 6 months, and statistical significance was borderline in per-protocol analysis ( p = 0.062). Changes in SEIQoL-DW index did not differ in the two groups, as changes in secondary patient and carer outcomes.ConclusionHPA slightly reduced symptoms burden. We found no evidence of HPA efficacy on patient quality of life and on secondary outcomes.
| S-EPMC5946675 | biostudies-literature
Project description:Background/objectivesMultiple sclerosis is characterised by the manifestation of heterogeneous symptoms that affect daily functioning. Patients face physical impairment, psychological problems and socioeconomic changes. Depending on the form of the disease, they may have different needs, which are often unsatisfied and could be overcome by including palliative care in the treatment. Despite the above, not enough is known about this population's needs for palliative care. This cross-sectional study aimed to identify the need for palliative care and assess the functional dependence level in daily living activities in patients with multiple sclerosis.MethodsThe sample consisted of 120 patients from the Neurology Clinic of the University Clinical Center of Vojvodina, Serbia. The following research instruments were used: a General questionnaire, Sheffield Profile for Assessment and Referral for Care, Multiple Sclerosis Impact Scale and Barthel Index.ResultsThe need for palliative care was expressed by 36.7% of patients, who expressed the most concern for the physical symptoms, independence and activity domains. Also, it was determined that the disease prevents patients from doing demanding physical tasks and that they are worried about multiple sclerosis. Almost a quarter of patients have had complete/severe dependence on other persons in performing daily activities.ConclusionsThe most frequently reported physical symptoms by patients with MS were weakness, bladder problems, fatigue and different levels of dependence, while concerns related to sexual health, low mood and anxiety emerged as key challenges in the psychological domain. These findings underscore the importance of conducting needs assessments to guide the development of an appropriate palliative care model for MS patients.
| S-EPMC11507286 | biostudies-literature
Project description: Not available
| S-EPMC8478014 | biostudies-literature
Project description:BackgroundIncreasing attention to palliative care for the general population has led to the development of various evidence-based or consensus-based tools and interventions. However, specific tools and interventions are needed for people with severe mental illness (SMI) who have a life-threatening illness. The aim of this systematic review is to summarize the scientific evidence on tools and interventions in palliative care for this group.MethodsSystematic searches were done in the PubMed, Cochrane Library, CINAHL, PsycINFO and Embase databases, supplemented by reference tracking, searches on the internet with free text terms, and consultations with experts to identify relevant literature. Empirical studies with qualitative, quantitative or mixed-methods designs concerning tools and interventions for use in palliative care for people with SMI were included. Methodological quality was assessed using a critical appraisal instrument for heterogeneous study designs. Stepwise study selection and the assessment of methodological quality were done independently by two review authors.ResultsFour studies were included, reporting on a total of two tools and one multi-component intervention. One study concerned a tool to identify the palliative phase in patients with SMI. This tool appeared to be usable only in people with SMI with a cancer diagnosis. Furthermore, two related studies focused on a tool to involve people with SMI in discussions about medical decisions at the end of life. This tool was assessed as feasible and usable in the target group. One other study concerned the Dutch national Care Standard for palliative care, including a multi-component intervention. The Palliative Care Standard also appeared to be feasible and usable in a mental healthcare setting, but required further tailoring to suit this specific setting. None of the included studies investigated the effects of the tools and interventions on quality of life or quality of care.ConclusionsStudies of palliative care tools and interventions for people with SMI are scarce. The existent tools and intervention need further development and should be tailored to the care needs and settings of these people. Further research is needed on the feasibility, usability and effects of tools and interventions for palliative care for people with SMI.
| S-EPMC6446277 | biostudies-literature
Project description:BackgroundWe performed a qualitative study to investigate the experiences of participants in a multicentre randomized controlled trial on a home-based palliative approach (HPA) for adults with severe multiple sclerosis (MS) and their caregivers. Our aim was to explore the strengths and challenges of the intervention, and circumstances that may have influenced its efficacy.MethodsParticipants to the qualitative study were the patients, their caregivers, patient referring physicians, and the teams who delivered the HPA intervention. We performed semi-structured one-on-one interviews with 12 patients and 15 informal caregivers chosen using a maximum variation strategy, two focus group meetings with patient referring physicians (4 participants each), and one with the HPA teams (9 participants).ResultsFrom data analysis (framework method) 38 sub-categories emerged, which were grouped into 10 categories and 3 themes: 'expectations,' 'met and unmet needs', and 'barriers'. Intervention benefits were improved control of symptoms and reduced sense of isolation of the patient-caregiver dyads. Limitations were: factors related to experimental design (difficulty of dyads in identifying examiner and team roles, additional burden for caregivers); team issues (insufficient team building /supervision, competing priorities); limitations of the intervention itself (insufficient length, lack of rehabilitation input); and external factors (resource limitations, under-responsive services/professionals). The referring physician focus groups provided little experiential data.ConclusionsThe HPA reduced patient symptoms and sense of isolation in patients and caregivers. The indirect role of the HPA teams, and insufficient length of the intervention were key limitations. The experimental design imposed additional burdens on the dyads. Key barriers were the paucity of available services, the demanding administrative procedures, and lack of networking facilities. These findings suggest that two major requirements are necessary for home palliative care to be effective in this patient population: HPA teams well-connected with MS rehabilitation services, and care delivered over the long-term, with variable intensity.Trial registrationCurrent Controlled Trials ISRCTN73082124 (Registered 19/06/2014).
| S-EPMC6042757 | biostudies-literature
Project description:BackgroundFatigue is 1 of the most common and annoying symptoms in patients with multiple sclerosis (MS). The purpose of this study was to investigate the effect of sensory interventions on fatigue in people with MS based on a systematic review of sensory evidence.MethodsThe Google Scholar, PubMed, Scopus, and Cochrane Library databases were searched from January 1990 to July 2020. Studies with nonpharmacologic sensory interventions as a main or secondary intervention according to the assessment of fatigue as the primary or secondary therapy outcome in patients with MS were included.ResultsNine articles were reviewed by examining the inclusion and exclusion criteria. Four types of interventions were related to exercises, including sensory integration exercises, vestibular rehabilitation, Frenkel exercises, and exercises with or without vibration; and 2 types were performed using robots and 1 type using vibration only. Vestibular rehabilitation therapies, exercise-based sensory integration interventions, and the use of vibration have shown significant effects in relieving fatigue in patients with MS.ConclusionsThe evidence in this study is insufficient to show a dramatic effect of sensory integration therapy in various forms. However, despite the studies, sensory integration therapy can be considered a potential treatment for fatigue in patients with MS. Further studies with stronger methods are needed to make this treatment a reality.
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Project description:BackgroundDigital health interventions have revolutionized multiple sclerosis (MS) care by supporting people with MS to better self-manage their disease. It is now understood that the technological elements that comprise this category of digital health interventions can influence participant engagement in self-management programs, and people with MS can experience significant barriers, influenced by these elements, to remaining engaged during a period of learning. It is essential to explore the influence of technological elements in mitigating attrition.ObjectiveThis study aimed to examine the study design and technological elements of documented digital health interventions targeted at people with MS-digital health interventions that were intended to support a program of engagement over a defined period-and to explore how these correlated with attrition among participants of randomized controlled trials (RCTs).MethodsWe conducted a systematic review and meta-analysis of RCTs (n=32) describing digital health self-management interventions for people with MS. We analyzed attrition in included studies, using a random-effects model and meta-regression to measure the association between potential moderators.ResultsThere were no measured differences in attrition between the intervention and control arms; however, some of the heterogeneity observed was explained by the composite technological element score. The pooled attrition rates for the intervention and control arms were 14.7% and 15.6%, respectively.ConclusionsThis paper provides insight into the technological composition of digital health interventions designed for people with MS and describes the degree of attrition in both study arms. This paper will aid in the design of future studies in this area, particularly for digital health interventions of this type.
| S-EPMC8867299 | biostudies-literature