The International Classification of Functioning Disability and Health (ICF) was approved in 2001 and, since then, several studies reported the increased interest about its use in different sectors. A recent overview that summarizes its applications is lacking. This study aims to provide an updated overview about 20 years of ICF application through an international online questionnaire, developed by the byline authors, and sent to each World Health Organization Collaborating Centers of the Family of International Classifications (WHO-FIC CCs). Data was collected during October 2020 and December 2021 and descriptive content analyses were used to report main results. Results show how, in most of the respondent countries represented by WHO-FIC CCs, ICF was mainly used in clinical practice, policy development and social policy, and in education areas. Despite its applications in different sectors, ICF use is not mandatory in most countries but, where used, it provides a biopsychosocial framework for policy development in health, functioning and disability. The study provides information about the needs related to ICF applications, that can be useful to organize targeted intervention plans. Furthermore, this survey methodology can be re-proposed periodically to monitor the use of the ICF in the future.

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.

Background and purpose: Health disparities and inequities are an important and too long overlooked public health concern worldwide. These differences in health and health care can affect people with any disease, including neurological disorders. The aim of this systematic review is to provide an updated overview of the main health inequities faced by neurological patients worldwide, to plan valuable interventions.Methods: Main databases were searched systematically. Quality was assessed with the Mixed Methods Appraisal Tool. This review followed the standard guidelines of Preferred Reporting Items for Systematic Reviews and Meta‐Analyses.Results: A total of 1797 studies were obtained, of which 49 studies were included in the final round and subjected to quality appraisal. Quality assessment yielded scores ranging from 20% to 100%. The results were divided based on the nature of inequities: (i) socioeconomic disadvantage (n = 25); and (ii) access to care, treatment, and services inequities (n = 24). Most studies were conducted in high income counties (n = 46, 93.8%) and reported health inequities in persons with cerebrovascular diseases, especially stroke (n = 20, 40.8%), followed by multiple sclerosis (n = 8, 16.3%) and neurodegenerative disorders (n = 6, 12.2%).Conclusions: Racial and ethnic discrimination, economic issues, differences in disease management, educational level, and place of residence are the main inequities reported by neurological patients. The USA dominates the research panorama (n = 36, 73.4%), highlighting the need for more studies that cover other geopolitical contexts. Improving population health means improving health for everyone; however, historically disadvantaged groups continue to trail dramatically behind, and actions are needed to reduce the inequities.

Backgroud: A huge amount of data about psychosocial issues of people with haemophilia (PwH) are available; however, these materials are fragmentary and largely outdated, failing to reflect the impact of current treatment strategies.Aim: Describing the influence of illness on psychosocial aspects of adult PwH (≥18 years) and caregivers of children with haemophilia (CPwH) without inhibitors, in Italy.Methods: Surveys (for adult PwH, CPwH and haemophilia specialists) were developed by a multidisciplinary working group and conducted from November 2019 to June 2020.Results: A total of 120 PwH without inhibitors and 79 CPwH completed the survey. Adult patients reported a significant impairment in many psychosocial aspects, including working activities, relations with family members and social relations. Caregivers generally reported better scores in all aspects of the survey. Mobility, Pain and Mental health domains of EQ‐5D were the most frequently impaired in both patients and caregivers, reducing the perceived quality of life. Genetic counselling was an important issue, 53% of CPwH declaring unawareness of their carrier status, as well as the psychological support offered by the reference center, 67.0% of respondents reporting that no psychological support was provided at the time of diagnosis communication.Conclusion: This study provides information about PwH's and CPwH's point of view in the current scenario of continuous innovations in haemophilia treatment and management furthermore, updated insights on psychosocial problems faced by patients and caregivers are reported.

Pain catastrophizing and cutaneous allodynia are commonly altered in patients with chronic migraine associated with medication overuse headache (CM-MOH) and tend to improve in parallel with clinical improvement. The relation between pain catastrophizing and cutaneous allodynia is poorly understood in patients with CM-MOH receiving OnabotulinumtoxinA therapy. In this single-arm open-label longitudinal observational study, patients with CM-MOH were assigned to structured withdrawal and then administered OnabotulinumtoxinA (5 sessions on a three-month basis, 195 UI per 31 sites). Headache frequency, medication intake, disability, impact, cutaneous allodynia and pain catastrophizing were evaluated with specific questionnaires. In total, 96 patients were enrolled and 79 completed the 12-month follow-up. With the exclusion of cutaneous allodynia and the magnification subscale of the pain catastrophizing questionnaire, all variables showed significant improvement by the sixth month, which was maintained at 12 months. Reduction of pain catastrophizing, and particularly of its helplessness subscale, was a significant predictor of reduction in headache frequency and medication intake. Pain catastrophizing is often implicated in the clinical improvement in patients with CM-MOH receiving behavioral treatments, but, in this study, also showed a role in patients receiving OnabotulinumtoxinA; combining OnabotulinumtoxinA and behavioral treatments specifically addressing pain catastrophizing might further enhance patients’ clinical outcome.

Multiple sclerosis (MS) is the most common cause of disability in young adults due to several motor, sensory, and cognitive symptoms. However, little is still known about the impact of psychological, cognitive, and social‐support variables on subjective disability. This study is aimed at exploring the role of clinical, psychological, cognitive, and social‐support variables in predicting disability levels as perceived by persons with multiple sclerosis (pwMS). The World Health Organization Disability Assessment Schedule (WHODAS 2.0) and the Expanded Disability Status Scale (EDSS) were used as subjective and objective measures of disability, respectively. State‐Trait Anxiety Inventory and Beck Depression Inventory‐II assessed symptoms of anxiety and depression; 19‐item Medical Outcome Study–Social Support Survey assessed social support; and Rao’s Brief Repeatable Battery assessed cognitive functioning. A multivariable regression analysis was applied using the WHODAS 2.0 as an outcome. One hundred and fifty‐one pwMS (93 females, mean age 51.6, standard deviation (SD) 5.8) were enrolled. EDSS ( β = 7.190; p < 0.001), state anxiety ( β = 0.265; p = 0.009), and symptoms of depression ( β = 0.835; p < 0.001) explained a large amount of the variance of subjective disability (Adj. R ² = 0.705; p < 0.001) measured through the WHODAS 2.0. Contrarily, cognitive functioning and perceived social support are not independently associated with the WHODAS 2.0 score. Psychosocial interventions in rehabilitation settings, aimed at reducing the overall perceived disability of pwMS, should be implemented in rehabilitation programs.