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Background: Despite the effectiveness of inhalation therapy, uncontrolled or severe asthma remains prevalent challenges in respiratory care Narrative Medicine (NM) offers a linguistic approach to comprehending illness experiences, thereby providing a framework for advancing healthcare. Aim: The primary aim of this study was to gather narratives from individuals grappling with severe or uncontrolled asthma and their Healthcare Professionals (HCPs), in order to explore the intricate interplay among quality of care, quality of life, psychological and social determinants, and adherence patterns. Methods: A cross-sectional NM study was conducted in Italy from February to December 2023, encompassing 135 patients with uncontrolled or severe asthma (54.7% male; mean age: 56.7 years) and 47 HCPs (64.9% male; mean age: 54.3 years). A mixed-method approach was adopted to scrutinize themes, language nuances, emotional expressions, and narrative classifications. Results: Patients with uncontrolled or severe asthma reported an average illness duration of 4.46 years, with exacerbations occurring over the past 20.9 months. Pulmonologists (83% of HCPs) played a predominant role in diagnosing and treating the disease in 96.1% of patients. Additionally, participants with severe asthma reported higher healthcare needs. The most reported emotions were fatigue (25.96%) and a sense of suffocation (11.53%). Upon commencing treatment, while experiencing physical improvement, patients predominantly expressed feelings of "submission/dependence" on medication (28%), followed by "fear" (21%) and "serenity/joy" (21%). HCPs, primarily pulmonologists (83%), emphasized the importance of raising awareness among specialists and General Practitioners (GPs), disseminating information, optimizing prescriptions, implementing phenotyping, tailoring therapy, and considering paediatric needs. Conclusion: These findings contribute to a deeper understanding of patient perspectives, facilitate personalized interventions, and underscore the factors influencing therapeutic adherence in uncontrolled or severe asthma. [ABSTRACT FROM AUTHOR]

The rapid spread of SARS-COV-2 and the millions of worldwide deaths and hospitalizations have prompted an urgent need for the development of screening tests capable of rapidly and accurately detecting the virus, even in asymptomatic people. The easy collection and the biomarker content of saliva, together with the label-free and informative power of surface-enhanced Raman spectroscopy (SERS) analysis have driven the creation of point-of-care platforms capable of identifying people with COVID-19. Indeed, different salivary fingerprints were observed between uninfected and infected people. Hence, we performed a retrospective analysis of SERS spectra from salivary samples of COVID-19-infected and -vaccinated subjects to understand if viral components and/or the immune response are implicated in spectral variations. The high sensitivity of the proposed SERS-based method highlighted the persistence of molecular alterations in saliva up to one month after the first positive swab, even when the subject tested negative for the rapid antigenic test. Nevertheless, no specific spectral patterns attributable to some viral proteins and immunoglobulins involved in COVID-19 infection and its progression were found, even if differences in peak intensity, presence, and position were observed in the salivary SERS fingerprint. [ABSTRACT FROM AUTHOR]

Caregivers of Amyotrophic Lateral Sclerosis (ALS) patients experience varying psychological responses following the patient's death, including sadness, loneliness, guilt, and a loss of purpose. This research aims to investigate the caregiver journey experienced from the time of diagnosis to the loss of a care recipient, with a specific focus on understanding the factors that contribute to improved coping with bereavement. The present study used the Interpretative Phenomenological Approach (IPA) to qualitatively explore the accounts of 41 Italian bereaved caregivers of people affected by ALS (Mean Age = 59.78; Female: 60.98%; Male: 39.02%). Results revealed 5 overarching themes representing 5 macro areas that emerged from the analysis of the interviews ("Caregiver's perception of his/her life", "Caregiver's feelings", "Caregiver's life after patient's death", "Caregiver's disease description", "Caregiver's help resources"), these were further defined based on 12 main themes, which were, in turn, articulated into 30 subthemes. The transition from life before ALS ("a peaceful landscape") to caregiver life (compared to the color "black") was a "shock", during which caregivers had to change their needs. However, life after the person living with ALS' death was both characterized by a sense of "re-birth" and "emptiness", and a general need for "psychological assistance" and "social support". Results emphasize the need to improve the psychological support offered to caregivers of person living with ALS after the patient's death, tailoring it to the specificity of the condition, to meet their emotional needs, reduce isolation and help them cope with practical challenges and plans. [ABSTRACT FROM AUTHOR]

Objectives: This study aimed to investigate the dynamic patterns of perception and expectations among COPD patients. Methods: Conducted at the Heart-Respiratory Rehabilitation Unit, IRCCS Fondazione Don Carlo Gnocchi, in Milan, Italy, the research involved 28 participants (16 males; mean age 72.8 ± 9.9) in face-to-face interviews. Utilizing a Grounded Theory approach, complemented by clinical data, recorded, and transcribed interviews underwent enhancement through the integration of two pictorial tools. Results: The central theme that emerged was a profound sense of responsibility toward their condition, perceived as a significant threat to life. Key symptoms, such as shortness of breath, coupled with negative expectations about their condition, contributed to depressive mood and avoidance behaviors. A notable proportion (N = 17; 60.71%) of participants struggled to envision a positive future, expressing a pervasive sense of hopelessness, which significantly influenced their health behaviors and adherence to medical recommendations. Conversely, individuals who felt supported and optimistic about treatment efficacy exhibited more positive expectations and adopted proactive coping strategies. Discussion: Recognizing the dynamic nature of patients' perceptions and negative illness expectations is essential to create personalized therapeutic interventions and meet the specific needs of COPD patients, ultimately improving the overall effectiveness of their care journey. [ABSTRACT FROM AUTHOR]

Introduction: The main aim was to gain insight into the experience of adult people with a diagnosis of at least 6-months of mild or moderate persistent asthma according to the Global Initiative for Asthma (GINA), and their emotions, beliefs, and expectations during the first wave of COVID-19.Methods: Qualitative semi-structured interviews using the Interpretative Phenomenological Analysis (IPA) were carried out by phone involving 31 people (mean age=58.2; SD=16.2). Interviews were audio recording, transcribed verbatim and analysed through thematic analysis.Results: Five superordinate themes and themes were dedicated to illness (symptoms of asthma; difficulties related to COVID-19), experienced emotions (lockdown period; medical changes; emotions COVID-19 related), beliefs (about asthma; about COVID-19), expectations (related to asthma; related to COVID-19) and behaviours (to protect; risk taken; adherence; contacts with General Practitioners; support). The prevalence of emotions such as fear, worry and anxiety emerged in the participants' narratives. All are accompanied by a preference for action and problem solving. A sense of protection, connection to self and other, and commitment to life were revealed as central concepts for enhancing well-being even at a time of deterring.Discussion: The common threads of the presence of uncertainty and vulnerability open the outlook of a treatment that ensures greater continuity and ownership of care in the patient, preserving the sense of self-efficacy even in times of greater instability. [ABSTRACT FROM AUTHOR]

Background: The purpose of this study is to better understand the way caregivers of patients with Rett syndrome perceive the quality of the health care services they receive and identify its main shortcomings. Methods: A survey was distributed to all caregivers who are part of AIRETT (the Italian Association of Relatives of Patients with RS). The survey gathered information on the management of relatives of patients with Rett syndrome. Results: The data refers to 52 patients, all females, with a median age of 15 years at the time of the survey. Concerning RS specificity, our data confirm the high complexity of this chronic, multifaceted condition, mainly characterized by the presence of epilepsy, apnea, severe scoliosis, and gastrointestinal symptoms. The specialists more frequently involved in the care of patients were general practitioners or family pediatricians (98%) and neurologists (92%), and more rarely physiatrists (71%). Only 15% of patients were followed by a pulmonologist, despite the fact that respiratory problems were frequent (apneas were present in 81% of patients, and 2% had a tracheostomy). Although 63.5% of patients presented with gastrointestinal symptoms and 2% had a gastrostomy, only 33% were followed by a gastroenterologist. Moreover, although orthopedic issues were present in 78.8% of patients, including severe scoliosis in 22% of them, only 25% were followed by an orthopedist. Furthermore, despite the fact that RS patients are fragile, about one quarter of them were not vaccinated. As far as organizational issues are concerned, several specialized centers are located in various regions throughout the country. As a consequence, the high mobility rate from one center to another resulted in non-homogeneous assistance. Conclusions: The study shows that caregivers of RS patients take over most obligations and burdens by increasing their perceived level of stress. For the majority of patients, the most frequent complications were not followed by the reference subspecialist, with the only exception of epilepsy. Moreover, improving vaccination strategies for these patients is necessary. [ABSTRACT FROM AUTHOR]

Introduction: Non-Invasive Positive Pressure Ventilation (NPPV) is an established treatment for people with Chronic Obstructive Pulmonary Disease (COPD), but it is often improperly used or rejected. The patterns of acceptance and adherence to NPPV, conceiving constraints, and strengths related to its adaptation have not been explored from a qualitative perspective yet. Objectives: This study aims to qualitatively explore patterns of adaptation to NPPV in people affected by COPD and to identify the core characteristics and the specific adaptive challenges during the adaptation process. Methods: Forty-two people with moderate or severe COPD were recruited and 336 unstructured interviews were conducted. A Constructivist Grounded Theory was used to gather and analyze data: the transcriptions were mutually gathered in open, selective, and theoretical phases, with open, selective, and theoretical coding, respectively. Results: The analysis resulted in a non-linear and dynamic process, characterized by three phases: deciding, trying NPPV, and using NPPV. The patterns revealed that positive and negative NPPV experiences, together with beliefs, emotions, stressful mental states, and behaviors result in different acceptance and adherence rates. Discussions: These findings may be helpful to implement new care strategies to promote acceptance and adherence to NPPV. [ABSTRACT FROM AUTHOR]

Objective assessment systems. Most studies concluded that COPD is perceived as a moderate threat destined to last forever, even if many participants referred to little disease knowledge. This perception did not change between adherent and non-adherent groups. Those who considered more necessary to take their medicines and had a caregiver were more adherent and less concerned about their future. On the other side, forgetfulness, lack of trust in medications, and difficulties in understanding how to take them were perceived as the main causes of non-adherence. Other predictors of non-adherence, like depression, low self-efficacy, and severity of disease were confirmed.Conclusion: The systematic review highlights the variability of the relationship between IP, cognitions and beliefs, and COPD treatment adherence. A new level of awareness of the relationship between patients' subjective point of view and treatment adherence may inform future treatment options and promote a more personalized intervention. [ABSTRACT FROM AUTHOR]

Non-invasive ventilatory support (NVS) is a technique used to reduce respiratory work in neuromuscular diseases, preventing the progression of respiratory failure. NVS is usually administered via a nasal or an oronasal mask, causing discomfort, especially in patients ventilated for more than 16 h/day. Intermittent abdominal pressure ventilation (IAPV) differs completely from conventional NVS and consists of a portable ventilator and a corset with Velcro closures as the interface. In our study, the practicability and efficacy of IAPV were studied in three Italian centers monitoring 28 neuromuscular patients using IAPV who were then retrospectively analyzed. The primary outcomes were an improvement in hypoxemia and the normalization of hypercapnia, and the secondary outcome was an improvement in quality of life. Data were collected at baseline (T0) and after two hours of ventilation (T1), with follow-ups at three months (T2) and six months (T3). Statistical significance was found for PaCO2 over time (F (2.42) = 7.63, p = 0.001) and PaO2 (W = 0.539, p = 0.033). The time of NVS usage also significantly affected the quality of life (F (2.14) = 6.90, p = 0.010), as seen when comparing T0 and T3. As an alternative ventilation method, IAPV is still relevant today and could become a key part of daytime support, especially for patients who do not tolerate standard daytime NVS with an oral interface. [ABSTRACT FROM AUTHOR]

Background: During a pandemic, tracheostomy management in neuromuscular disease (NMD) patients can be complex. Methods: Using a multicentre, multiple case study approach, we sought perspectives through semi-structured interviews via hybrid quali-quantitative analysis. The qualitative analysis involved a semi-structured interview and the quantitative analysis the completion of a battery of questionnaires. Aim: To investigate the caregivers' experiences, burden and beliefs regarding tracheostomy during the Italian COVID-19 pandemic. The following instruments were administered: Connor and Davidson Resilience Scale (CD-RISC-25); Acceptance and Action Questionnaire-II (AAQ-II); State-Trait Anxiety Inventory (STAI); Langer Mindfulness Scale (LMS); Zarit Burden Interview (ZBI). Results: Fifty-three caregivers (62.3% female, mean age 52.2 (SD = 18.2)) participated in the study. The more resilient the carers, the more they were psychologically flexible (r = 0.380, p = 0.014) and able to cope adaptively with the emergency (r = 0.378, p < 0.006). Similarly, perceived control was higher the more resilient they were (r = 0.897, p < 0.001). The main emotions emerging were isolation and loneliness (15; 34.88%). The perception of tracheostomy meant that it could be seen as a lifesaver or as a condemnation. Similarly, the relationship with health professionals moves from satisfaction to a feeling of abandonment over the course of the pandemic. Conclusions: These findings offer a unique opportunity to understand the point of view of caregivers of NMD patients living with tracheotomy during the COVID-19 pandemic, when going to the hospital may have been hampered. [ABSTRACT FROM AUTHOR]

BACKGROUND: A proportion of patients with COVID-19 need hospitalization due to severe respiratory symptoms. We sought to analyze characteristics of survivors of severe COVID-19 subsequently admitted to in-patient pulmonary rehabilitation and identify their rehabilitation needs. METHODS: From the COVID-19 Registry of Fondazione Don Gnocchi, we extracted 203 subjects admitted for in-patient pulmonary rehabilitation after severe COVID-19 from April 2020-- September 2021. Specific information on acute-hospital stay and clinical and functional characteristics on admission to rehabilitation units were collected. RESULTS: During the acute phase of disease, 168 subjects received mechanical ventilation for 26 d; 85 experienced delirium during their stay in ICU. On admission to rehabilitation units, 20 subjects were still on mechanical ventilation; 57 had tracheostomy; 142 were on oxygen therapy; 49 were diagnosed critical illness neuropathy; 162 showed modified Barthel Index < 75; only 51 were able to perform a 6-min walk test; 32 of 90 scored abnormal at Montreal Cognitive Assessment; 43 of 88 scored abnormal at Hospital Anxiety and Depression Scale; 65 scored ≥ 2 at Malnutrition Universal Screening Tool, and 95 showed dysphagia needing logopedic treatment. CONCLUSIONS: Our analysis shows that subjects admitted for in-patient pulmonary rehabilitation after severe COVID-19 represent an extraordinarily multifaceted and clinically complex patient population who need customized, comprehensive rehabilitation programs carried out by teams with different professional skills. The need for step-down facilities, such as sub-intensive rehabilitation units, is also highlighted. [ABSTRACT FROM AUTHOR]

Introduction: Telerehabilitation (TR) for chronic heart failure (CHF) allows for overcoming distance barriers and reducing exacerbations. However, little is known about TR descriptors, components, and efficacy in CHF. Methods: This work systematically reviewed the TR strategies of randomized controlled trials in people with CHF. A meta-analysis was run to test its effect on exercise capacity and quality of life compared to no rehabilitation (NI) and conventional intervention (CI). Results: Out of 6168 studies, 11 were eligible for the systematic review, and 8 for the meta-analysis. TR intervention was individual and multidimensional, with a frequency varying from 2 to 5 times per 8–12 weeks. The TR components mainly included an asynchronous model, monitoring/assessment, decision, and offline feedback. A few studies provided a comprehensive technological kit. Minimal adverse events and high adherence were reported. A large effect of TR compared to NI and a non-inferiority effect compared to CI was registered on exercise capacity, but no effects of TR compared to NI and CI on quality of life were observed. Conclusions: TR for people with CHF adopted established effective strategies. Future interventions may identify the precise TR dose for CHF, technological requirements, and engagement components affecting the patient's quality of life. [ABSTRACT FROM AUTHOR]