Functioning and disability in multiple sclerosis from the patient perspective

Multiple sclerosis (MS) has a great impact on functioning and disability. The perspective of those who experience the health problem has to be taken into account to obtain an in-depth understanding of functioning and disability. The objective was to describe the areas of functioning and disability and relevant contextual factors in MS from the patient perspective. A qualitative study using focus group methodology was performed. The sample size was determined by saturation. The focus groups were digitally recorded and transcribed verbatim. The meaning condensation procedure was used for data analysis. Identified concepts were linked to International Classification of Functioning, Disability and Health (ICF) categories according to established linking rules. Six focus groups with a total of 27 participants were performed. In total, 1327 concepts were identified and linked to 106 ICF categories of the ICF components Body Functions, Activities and Participation and Environmental Factors. This qualitative study reports on the impact of MS on functioning and disability from the patient perspective. The participants in this study provided information about all physical aspects and areas of daily life affected by the disease, as well as the environmental factors influencing their lives

Patient and caregiver involvement in the formulation of guideline questions: findings from the European Academy of Neurology guideline on palliative care of people with severe multiple sclerosis

Background and purpose: Patient and public involvement in clinical practice guideline development is recommended to increase guideline trustworthiness and relevance. The aim was to engage multiple sclerosis (MS) patients and caregivers in the definition of the key questions to be answered in the European Academy of Neurology guideline on palliative care of people with severe MS. Methods: A mixed methods approach was used: an 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 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 analysed: 751 (80%) were MS patients (74% women, mean age 46.1) and 183 (20%) were 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 focus group meetings (three of MS patients, two of caregivers, and overall 35 participants) corroborated the survey findings. In addition, they allowed an explanation of the guideline production process and the exploration of patient-important outcomes and of taxing issues. Conclusions: Multiple sclerosis patient and caregiver involvement was resource and time intensive, but rewarding. It was the key for the formulation of the 10 guideline questions and for the identification of patient-important outcomes

Mobile Palliative Care Consultation Service (PCCS): Overview of Hospice and Palliative Care Evaluation (HOPE) Data on In-Patients With End-Stage Cancer, Multiple Sclerosis, and Noncancer, Nonneurological Disease From 4 PCCS Centers in Germany in 2013

Context: During the last decade, numerous in-patient Palliative Care Consultation Service (PCCS) units were established throughout Germany. Objective: To provide an epidemiological overview on a whole year cohort of palliative patients in terms of demography, complaints, and therapy on admission to PCCS and the impact of PCCS treatment, and identify differences and similarities in different palliative patient subgroups. Methods: Chi-square, analysis of variance (ANOVA), Kruskal-Wallis followed by Games-Howell analysis of HOspice and Palliative care Evaluation (HOPE 2013) data on 4 PCCS centers and in total 919 patients, with solid tumors (237), metastatic cancer (397), leukemia and lymphoma (99), neurological (109, mostly multiple sclerosis [MS]), and noncancer, nonneurological disease (NCNND, 77). Results: A mostly uniform block of 3 cancer subgroups in terms of demographics, admission complaints, and initial pharmacological treatment diverged from the neurologic/MS disease subgroup. The “intermediate,” NCNND subgroup coalesced with the cancer or the neurologic/MS subgroups in part of the demographics, complaint, and drug parameters. Tetraparesis, requirement for nursing, and help with daily living were more, and pain, dyspnea, weakness, appetite loss, and fatigue were less frequent in neurologic patients compared with the cancer subgroups. Neurologic patients also showed more common use of coanalgetics and antidepressives, less opiates and nonopiate analgetics, corticosteroids, and antiemetics and antacids. NCNND patients had a particularly high rate of disorientation (48%) and death during PCCS (39%). In the 3 cancer subgroups, dyspnea, weakness, appetite loss, and anxiolytic use were less frequent in solid tumor patients. Palliative Care Consultation Service treatment was associated with reduction in symptom severity independent of subgroup entity. All listed differences were significant at P  < .05 level. Conclusion: Despite divergence in demographics, symptoms, and medication, the data underline general usefulness of PCCS care in all end-stage patients and not only the cancer subgroups. Nevertheless, the strong differences revealed in the current study also underscore the need for a carefully tuned, disease-specific therapeutic approach to these subgroups of palliative patients