The degree to which work-related difficulties are recognized in headache research is poor and often carried out with inadequate information such as “reduced ability to work as usual”, which do not capture at all the variety of difficulties and the factors that impact over them. The aim of this paper is to present the validation of the HEADWORK questionnaire, which addresses the amount and severity of difficulties in work-related tasks and the factors that impact over them. We developed a set of items based on a previous literature review and patients’ focus groups and tested it on a wide set of patients with episodic and chronic migraine attending eight different Italian headache centers. HEADWORK factor structure was assessed with exploratory and confirmatory factor analysis; internal consistency and construct validity were addressed as well. The validation sample (N = 373) was mostly composed of patients with episodic migraine without aura (64.3%) and of females (81%). Factor analysis retrieved two different scales: “Work-related difficulties”, composed of eleven items which explain 67.1% of the total variance, and “Factors contributing to work difficulties”, composed of six items which explain 52.1% of the total variance. Both HEADWORK subscales have good measurement properties, with higher scores being associated to higher disability, lower quality of life, lower productivity, higher headache frequency and pain intensity. HEADWORK is a 17-item, two-scale questionnaire addressing the impact of migraine on work-related difficulties in terms of difficulties in general or specific skills, and the factors contributing to these difficulties, defined as negative impact on work tasks. It can be used to address disability weights for the purpose of calculating the burden of migraine, and to assess the balance between therapeutic and side effects of medication on productivity.

Objectives: To address the way in which primary caregivers of people over 45 with Down syndrome describe daily life activities and context and foresee their future. Methods: Thirteen family members and 15 health professionals participated to four focus groups. Meaningful concepts were identified and linked to the International Classification of Functioning, Disability and Health using established linking rules. Results: A total of 258 relevant concepts were identified and linked to 75 categories of the classification: 38 were from activity and participation and 17 from environmental factors domains. The most commonly reported issues were mental functions (b117-intellectual functions and b152-emotional functions), community life activities (d910-community life and d920-recreation and leisure) and environmental factors (e310-support of immediate family, e355-support from health professionals and e555-associations and organizational services). Conclusions: Information on the daily life and health of ageing people with Down syndrome is important to plan social and health care interventions tailored to deal with problems that they may encounter in older age. Considering the interaction between health and environment and maintaining a continuity of daily routines were reported as the most relevant topics for managing daily lives of persons with Down syndrome in older ages.

Background: The COVID-19 pandemic contributes to the burden of living with different diseases, including Systemic Lupus Erythematosus (SLE). We described, from a narrative point of view, the experiences and perspectives of Italian SLE adults during the COVID-19 emergency, by distinguishing the illness experience before and after the lockdown. Methods: Fifteen patients were invited to participate. Illness narratives were collected between 22 and 29 March 2020 using a written modality to capture patients’ perspectives before and after the COVID-19 lockdown. We performed a two-fold analysis of collected data by distinguishing three narrative types and a qualitative analysis of content to identify the relevant themes and sub-themes reported. Results: Eight narratives included in the final analysis (mean length 436.9 words) have been written by eight females (mean age 43.3 ± 9.9 years, mean disease duration 13.1 ± 7.4 years). Six patients provided a quest narrative, one a chaos and the remaining one a restitution narrative. By text content analysis, we identified specific themes, temporally distinct before and after the lockdown. Before COVID-19, all the patients referred to a good control of disease, however the unexpected arrival of the COVID-19 emergency broke a balance, and patients perceived the loss of health status control, with anxiety and stress. Conclusions: We provided unique insight into the experiences of people with SLE at the time of COVID-19, underlining the perspective of patients in relation to the pandemic.

The COVID-19 pandemic imposed changes on day-to-day activities and had a detrimental psychological effect on the population, especially among vulnerable individuals, such as adolescents and young adults. The current study aimed to explore variables associated with anxiety, depressive and somatic symptoms in a sample of 608 Italian young adults aged 18 to 25. Data were collected using an online questionnaire administered two months into the COVID-19 lockdown, which explored several areas including sociodemographic information, pre-pandemic and current psychological distress, pre-pandemic and current levels of loneliness, and the traits of intolerance of uncertainty and boredom susceptibility. Results highlighted that having pre-existing mental health issues, being female, and the personality traits of intolerance to uncertainty and boredom susceptibility all played a role in the psychological distress experienced during the pandemic. COVID-19 contributed to negative impacts on young adults’ mental health, highlighting the necessity to develop protective psychological intervention tailored for this vulnerable population.

Background/Objectives: In recent years, Narrative Medicine (NM) has gained prominence in the context of neurodegenerative diseases, such as dementia, offering tools to understand the subjective experience of illness and to improve the care relationship. Methods: This scoping review, conducted following the PRISMA guidelines, analyzed the scientific literature from PubMed, PsycInfo, Web of Science, and Medline, encompassing 10 contributions focused on NM and patients with dementia or Alzheimer’s disease. Results: The analysis identified three main themes: 1) narrative, memory, and personal identity, highlighting the role of narrative in preserving a sense of self; 2) personalization of care, oriented towards person-centeredness; 3) the use of narrative in a formative and reflective function as a tool to promote empathy, clinical awareness, and observation skills in the training of health professionals. Conclusions: NM confirms itself as a relational and reflexive paradigm, capable of humanizing care and promoting therapeutic pathways that are more inclusive and sensitive to the patient’s subjectivity.