INTRODUCTION: The collaboration between palliative care and neurology has developed over the last 25 years and this study aimed to ascertain the collaboration between the specialties across Europe.
METHODS: This online survey aimed to look at collaboration across Europe, using the links of the European Association for Palliative Care and the European Academy of Neurology.
RESULTS: 298 people completed the survey-178 from palliative care and 120 from neurology from over 20 countries across Europe. They reported that there was good collaboration in the care for people with amyotrophic lateral sclerosis and cerebral tumours but less for other progressive neurological diseases. The collaboration included joint meetings and clinics and telephone contacts. All felt that the collaboration was helpful, particularly for maintaining quality of life, physical symptom management, psychological support and complex decision making, including ethical issues.
DISCUSSION: The study shows evidence for collaboration between palliative care and neurology, but with the need to develop this for all neurological illness, and there is a need for increased education of both areas.
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.
BACKGROUND: Outcome measurement is fundamental to assess needs and priority of care in palliative care settings. The Integrated Palliative care Outcome Scale (IPOS) was developed from earlier versions of this tool. Its use is encouraged to ameliorate the assessment of individual outcomes in palliative care settings. This study aimed to translate and culturally adapt IPOS into Italian, and explore its face and content validity.
METHODS: After forward-backward translation, a qualitative study explored the views of and cognitive processes used by respondents. We conducted individual semi structured interviews with 21 patients admitted to two palliative care services, from hospitals, hospices and the community, and focus groups with 12 professionals working in multidisciplinary palliative care teams and used thematic analysis. The results were integrated in a final audit, including the project team and the original POS developers, to refine the final format of the tool.
RESULTS: We conducted 21 face to face cognitive interviews with patients, and 2 focus groups with 14 professionals. Patients and professionals felt content and format of IPOS appropriate and feasible, and not burdensome. Some layout problems were raised leading to adaptation. Main issues regarded: clarifying the meaning of choices and some cultural interpretation of some questions and response options and interpretation of some instructions. We proposed using some new terms as more appropriate and comprehensive in our context, such as replacing the term "family" with "dear ones". The items that appeared unchanged from the previously validated Italian POS were left unmodified to maintain coherence.
CONCLUSIONS: The Italian IPOS, in its four versions directed to patients or staff and with a recall period of 3 or 7 days, has face and content validity for use in clinical settings and is ready for further psychometric and clinimetric validation.
BACKGROUND: We 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.
METHODS: Participants 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).
RESULTS: From 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.
CONCLUSIONS: The 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 REGISTRATION: Current Controlled Trials ISRCTN73082124 (Registered 19/06/2014).
BACKGROUND: Patient and public involvement in clinical practice guideline development is recommended to increase guideline trustworthiness and relevance.
OBJECTIVE: To engage multiple sclerosis (MS) patients and caregivers in definition of the key questions to be answered in the EAN Guideline on Palliative Care of People with Severe MS.
METHODS: A mixed methods approach was used: International online survey launched by the national MS societies of eight countries, after pilot testing/debriefing on 20 MS patients and 18 caregivers; focus group meetings (FGMs) of Italian and German MS patients and caregivers.
RESULTS: Of 1199 participants, 951 (79%) completed the whole online survey, and 934 from seven countries were analyzed: 751 (80%) were MS patients (74% women, mean age 46.1) and 183 (20%) caregivers (36% spouses/partners, 72% women, mean age 47.4). Participants agreed/strongly agreed on inclusion of the nine pre-specified topics (from 89% for 'advance care planning' to 98% for 'multidisciplinary rehabilitation'), and <5% replied 'I prefer not to answer' to any topic. There were 569 free comments: 182 (32%) on the pre-specified topics, 227 (40%) on additional topics (16 guideline-pertinent), and 160 (28%) on outcomes. Five FGMs (three of MS patients, two of caregivers, overall 35 participants) corroborated the survey findings. In addition, they allowed the explanation of the guideline production process, the exploration of patient-important outcomes and of taxing issues.
CONCLUSIONS: MS patient and caregiver involvement was resource and time intensive, but rewarding. It was key for the formulation of the 10 guideline questions, and for the identification of patient-important outcomes.
The care of elderly people with progressive neurodegenerative disease is often complex and palliative care may be helpful from soon after diagnosis to enable the quality of life to be maintained as much as possible. Palliative care may be involved in an episodic way, as new problems and issues are faced, throughout the disease progression. There are many issues which require careful assessment, including symptoms, psychological, and social aspects of care. This may include the assessment of cognitive change and ensuring that symptoms and issues are addressed correctly, even if the person cannot communicate or is cognitively compromised. This care will also include carers, spouses and families, professional carers, and carers within residential and nursing homes. Patients and carers may need ongoing support, to cope with the multiple and continual losses faced within neurological disease progression, with the complex interaction with other comorbidities and the effects of ageing. As the progression continues the recognition of end of life, through the assessment of triggers, is important so that all can be prepared for dying and death.
La taskforce de l'Association européenne pour les soins palliatifs a travaillé avec l'Académie européenne de neurologie pour produire une revue de consensus sur les soins palliatifs dans le cas de troubles neurologiques. Les auteurs en soulignent les principales recommandations.
Cette étude qualitative montre que les patients souffrant de maladie neurodégénérative se heurtent à de nombreux problèmes différents : physiques, psychologiques, sociaux et spirituels. Cette situation n'est pas toujours reconnue et l'implication d'une équipe de soins palliatifs pluridisciplinaire peut être utile dans la gestion de ces problèmes.