Publications by authors named "Ilaria Palla"

Background: Malawi ranks 142 out of 170 countries on the UN's Gender Inequality Index (GII). Women and men in Malawi have unequal access to and control over resources. Previous research has primarily examined gender roles and norms from a women's perspective, but few studies have investigated men's attitudes and behaviors regarding gender equality.

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Background: The present work aimed to estimate the economic impact of PTSD following COVID-19 in a population of patients affected by systemic autoimmune disease (SAD) using a cost-of-illness approach and accounting for the perspective of society.

Methods: Considering data collected from SAD patients enrolled in a specialized outpatient clinic in the Tuscany region, Italy, generalized linear models and LASSO logistic regression were used to evaluate the impact of PTSD on costs and its relevance as a possible predictor of being a high-cost patient, respectively.

Results: Considering 301 SAD patients, 161 (51.

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Objective: To optimise the organisation of care and encourage the adoption of good clinical practices, the RarERN Path methodology was designed within ERN ReCONNET. The aim of our work was to report the application of RarERN Path on systemic sclerosis within the ERN ReCONNET centres, providing a feasible and flexible organisational reference model for optimising the systemic sclerosis care pathway in different countries.

Methods: RarERN Path is a six-phase methodology which enables the creation of a reference organisational model co-designed on the basis of the expertise of different stakeholders.

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Background: The origin of Narrative Medicine dates back to more than 20 years ago at an international level. Narrative Medicine is not an alternative to evidence-based medicine, however these two approaches are integrated. Narrative Medicine is a methodology based on specific communication skills where storytelling is a fundamental tool to acquire, understand and integrate several points of view related to persons involving in the disease and in the healthcare process.

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In recent years, the advent of new technologies has fostered their application in neuro-psychomotor and language rehabilitation, particularly since the COVID-19 pandemic. Tele-rehabilitation has emerged as an innovative and timely solution, enabling personalized interventions monitored by clinicians. TABLET TOSCANA project aims to develop innovative tele-rehabilitation organizational models in children, adolescents and young adults with congenital and acquired developmental disabilities, using the Virtual Reality Rehabilitation System (VRRS) Home Kit and the MedicoAmico APP.

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Objectives: The COVID-19 outbreak led to an increase in mental disorders, particularly post-traumatic stress disorder (PTSD), in the general population and especially in high-risk populations such as patients with rheumatologic conditions. Although these latters are considered vulnerable to developing PTSD, few specific data have been particularly reported in the framework of the pandemic. The aim of the present study was to investigate PTSD and post-traumatic stress symptoms (PTSS) in a sample of patients with systemic autoimmune disease (SAD), followed in the framework of a prospective observational study during the pandemic.

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Objective: This study aims at evaluating the cost-of-illness (COI) of patients diagnosed with Behcet's syndrome (BS) in Italy, trying to depict the impact of different costs' components to the overall economic burden and analysing the variability of costs according to years since diagnosis and age at first symptoms.

Methods: With a cross-sectional evaluation, we surveyed a large sample of BS patients in Italy assessing several dimensions related to BS, also including fact related to the use of health resources utilization, formal and informal care, and productivity losses. Overall costs, direct health, direct non-health, and indirect costs were thus estimated per patient/year considering a Societal perspective and the impact of years since diagnosis, age at first symptoms on costs was evaluated using generalized linear model (GLM) and a two-part model, adjusting for age and distinguishing among employed and non-employed responders.

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As a matter of fact, organisation always matters when discussing about healthcare, since it is fundamental in order to ensure the delivery of the most appropriate care to patients in the most appropriate way. Unfortunately, the pandemic brought by the severe acute respiratory syndrome-coronavirus 2 (SARS-CoV-2) imposed a huge reorganisation of the healthcare systems, with several repercussions on the care of several chronic conditions, that were in many cases discontinued. This was the case of rare diseases (RDs), conditions that even under normal circumstances can experience diagnostic delays and difficulties in receiving appropriate care.

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Introduction: Benign prostatic hyperplasia (BPH) is a common diagnosis among the ageing male population over 60 years and it is associated with the development of lower urinary tract symptoms (LUTS): dysuria, nocturia, increased frequency of urination, etc. LUTS negatively affect the patient's daily activities and the quality of life. Patients with severe and persisting symptoms, not responding to pharmacological therapy, are candidates for surgical intervention.

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Article Synopsis
  • The objective of the study was to map the care pathways for pregnant women with rare and complex connective tissue diseases (rcCTDs) in specialized clinical centers.
  • A survey conducted by an international expert group gathered insights from 69 centers across 21 countries, revealing that most centers provided care for systemic lupus erythematosus and antiphospholipid syndrome, but less for other disorders like IgG4-related diseases.
  • The study found that while a multidisciplinary team approach was common, with pre-pregnancy care offered at 96% of centers, the consistency of services and access to therapies varied widely, indicating a need for standardized care protocols to improve patient outcomes.
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  • The study aimed to investigate the unmet needs of patients with rare and complex rheumatic tissue diseases (rCTDs) during pregnancy using a narrative-based medicine (NBM) approach.
  • A survey co-designed by rCTD patient representatives collected 112 stories from patients, revealing issues like fragmented care, lack of education among healthcare providers, and insufficient information for patients and their families.
  • The findings emphasized the importance of a holistic approach, including specialized pregnancy clinics and psychological support, to better address these needs and improve patient care in future initiatives.*
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Article Synopsis
  • Patient registries are essential for understanding and managing rare connective tissue diseases (rCTDs), and the ERN ReCONNET initiative aims to establish a unified registry framework across Europe.
  • An online survey and database research revealed 140 registries for rCTDs, although certain conditions like relapsing polychondritis and mixed connective tissue disease lack specific registries.
  • The findings help identify gaps and strengths in existing registries, laying the groundwork for developing a standardized data collection method for rCTDs within the TogethERN ReCONNET Infrastructure.
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Background: As chronic conditions, rare and complex connective tissue and musculoskeletal diseases (rCTDs) significantly affect the quality of life generating an impact on the physical, psychological, social, and economic dimensions of the patients' lives, having implications on the family, changing the lifestyle and interpersonal relationships. Traditionally, generic and disease-specific measures for Quality of Life (QoL) provide valuable information to clinicians since QoL affects healthcare services utilization, predicts morbidities and mortalities, workability, etc. Moreover, the assessment of unmet clinical needs, satisfaction, the experience with the treatment and the care, the psychological dimensions, and the effects of the diseases, such as fatigue, could represent valuable dimensions to be considered in the QoL impact assessment.

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Several strategies and interventions have been implemented to improve male partner involvement (MI) in Sub-Saharan Africa, but evidence on successful interventions is scarce. This controlled before-and-after intervention study aims to evaluate the impact of three interventions on male partners' involvement in HIV+ women's care in Malawi. We piloted these three interventions: the organization of a special day for men, the deployment of male champions in communities to increase awareness on MI, and the delivery of an incentive (food package) for couples attending the facility.

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Background: Previous literature reports that low male partner support is a barrier to women's adherence and retention in HIV care programs.

Objective: This qualitative study explored the relationships between partners to understand what is meant by male partner support in adherence of HIV-positive women in four healthcare facilities in Southern Malawi.

Methods: We conducted 8 semi-structured focus group discussions (FGDs) with 73 participants (40 men and 33 women) and 10 in-depth interviews (IDIs) between August 2018 to December 2019.

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Background: As often seen in many chronic diseases, the disease impact on patients also induces a significant impact on the quality of life (QoL) of caregivers. Caregivers are the ones who are really willing to offer care in the general approach of many aspects of the disease, including the awareness of the diseases itself, the daily management of therapy, and all the potential challenges that living with a chronic disease can include. The main objectives of the study were to explore the perspectives and views of caregivers of Behçet's syndrome (BS) patients, to study their level of awareness on the disease and the impact that BS may have on their lives by means of a survey co-designed with caregivers and patients with this purpose.

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Background: According to the World Health Organization, in 2018, 37.9 million people were living with HIV globally. More than two-thirds were residing in sub-Saharan Africa, where the HIV prevalence in the adult population (aged 15-49 years) was 3.

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Background: In 2017, the European Commission has launched the European Reference Networks (ERNs), virtual networks involving healthcare providers across Europe. The aim of the ERNs is to tackle complex and rare diseases and conditions that require highly specialized treatment and a concentration of knowledge and resources. The ERN on rare and complex connective tissue and musculoskeletal diseases (ERN ReCONNET) is one of the 24 ERNs approved that aims to improve the management of Rare and Complex Connective Tissue and Musculoskeletal Diseases.

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Article Synopsis
  • Male partners are often absent during PMTCT services in Sub-Saharan Africa, but their involvement is crucial for improving women's access to HIV care.
  • A study in Malawi found that 64.1% of HIV-positive pregnant women were accompanied by their male partners, with women's HIV knowledge positively impacting male attendance.
  • The study also revealed that women's employment status and having transportation negatively influenced the likelihood of male attendance, while attitudes and practices toward HIV did not show significant associations.
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Rare and complex connective tissue diseases (rCTDs) encompass a considerable number of diseases and syndromes and their variability highly impacts on the clinical management, resulting in variable economic and organisational burden that might represent a challenge for healthcare systems. This paper is aimed at providing an overview of the most recent evidence regarding the economic and organisational impact of rCTDs. In particular, this work discusses the most relevant data on specific aspects related to health economics in rCTDs published in 2019.

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Background: Male involvement (MI) along the continuum of HIV healthcare services has been promoted as a critical intervention in low-income countries and represents one of the reasons for dropout and low retention of women along the cascade of care. The present review aims to identify interventions adopted to improve MI across Antenatal Clinics (ANCs).

Methods: For this systematic review, we searched electronic databases, including Scopus, PubMed, Web of Science (from 2008 to 2018) in English language.

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Rare diseases imply clinical and economic burden as well as a significant challenge for health systems. One relevant objective of the activities planned within the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases (ERN ReCONNET) is to address the economic dimensions of rare diseases to identify, develop and suggest strategies to improve research and patients' access to orphan drugs (ODs) and highly specialised health technologies. This paper presents a preliminary review of the existing policies on rare diseases in the countries of the Network members.

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The diagnostic-therapeutic pathways (DTPs) are emerging as useful instruments for clinical management of complex diseases as gastric cancer, whose treatment is challenging and requires a multidisciplinary approach. However, the DPTs of patients with gastric cancer are still not defined yet. The aim of this study was to define the optimal DPT to be applied for patients with gastric cancer in the Veneto region.

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