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Background: The management of tracheotomy at home can be very complex, affecting the patient’s quality of life. Objectives: This case series study aimed to explore the experiences of patients affected by neuromuscular diseases (NMD)... more
Background: The management of tracheotomy at home can be very complex, affecting the patient’s quality of life. Objectives: This case series study aimed to explore the experiences of patients affected by neuromuscular diseases (NMD) concerning tracheostomy and Invasive Mechanical Ventilation (IMV) management at home during the COVID-19 health emergency in Italy. Methods: Semi-structured interviews and the following instruments were used: Connor and Davidson Resilience Scale (CD-RISC-25); Acceptance and Action Questionnaire-II (AAQ-II); State-Trait Anxiety Inventory (STAI); Langer Mindfulness Scale (LMS). Descriptive analyses, correlations, and qualitative analyses were carried out. Results: 22 patients [50% female, mean age = 50.2 (SD = 21.2)] participated in the study. Participants who showed high levels of dispositional mindfulness in terms of novelty-seeking (r = 0.736, p = 0.013) and novelty production (r = 0.644, p = 0.033) were those with higher resilience. The main emotion th...
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... more
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 ...
Introduction Although poor medication adherence is considered an impacting risk factor for worsening heart failure (HF) outcomes, adherence rates in HF patients continue to be considerably low. To improve this condition, several studies... more
Introduction Although poor medication adherence is considered an impacting risk factor for worsening heart failure (HF) outcomes, adherence rates in HF patients continue to be considerably low. To improve this condition, several studies investigated the impact of many determinants on medication adherence; however, few authors explored the role of depression on it. Purpose of Review The purpose of this systematic review was to explore the association between depressive symptoms and medication adherence in HF patients. In particular, the research question was is depression a barrier to medication adherence in HF patients? Methods A systematic review of quantitative analysis studies was undertaken. Six electronic databases were searched between the end of October and March 2022. Thirty-one trials were included, all of them assessed depression, adherence to medication, and their possible relationship. Results As was intended, findings showed that the impact of a mild to moderate level o...
The present study investigated the patterns of mutual associations between maladaptive daydreaming-related variables (MD, i.e., interference with life and somatosensory retreat), psychopathological symptoms (i.e., depression, anxiety,... more
The present study investigated the patterns of mutual associations between maladaptive daydreaming-related variables (MD, i.e., interference with life and somatosensory retreat), psychopathological symptoms (i.e., depression, anxiety, somatization, obsessive–compulsive, interpersonal sensitivity, psychoticism), emotion regulation strategies (i.e., cognitive reappraisal and expressive suppression), and problematic social networking sites use (PSNSU). A total of 531 young adults completed self-report measures through an online survey shared on social network groups. Two network models were performed on 297 young adults with probable MD (MDers) (Mage = 23.2, SD = 2.7) vs. 234 non-MDers (Mage = 23.4, SD = 2.6). Results showed that, compared to non-MDers, MDers showed significantly higher scores in all the study variables, except for cognitive reappraisal. Moreover, in the MDers network, the following patterns were identified: (i) no connections between the cluster of psychopathological ...
Background: The chronic and progressive evolution of Inflammatory Bowel Diseases (IBD), with its prototypical fluctuating trend, creates a condition of psycho-social discomfort, impacting the quality of life in terms of personal, working... more
Background: The chronic and progressive evolution of Inflammatory Bowel Diseases (IBD), with its prototypical fluctuating trend, creates a condition of psycho-social discomfort, impacting the quality of life in terms of personal, working and interpersonal.Aims: In this article, we want to identify the nature and extent of the research evidence on the life experiences, the perceived engagement and the psychosocial and medical needs of people affected by IBD across the lifecycle. Methods: Following the approach set out by Arksey and O’Malley and the PRISMA extension for scoping reviews, we conducted a scoping review in March 2019 and closed the review with an update in October 2019. It was performed using electronic databases covering Health and Life Sciences, Social Sciences and Medical Sciences, such as PubMed, Medline, Embase, Scopus, Cochrane, Web of Science, PsycInfo.Results: We identified 95 peer-reviewed articles published from 2009 to 2019, that allowed to detect the main need...
Background Despite Auditory Verbal Hallucinations (AVHs) have been long associated with mental illness, they represent a common experience also in the non-clinical population, yet do not exhibit distress or need for care. Objectives This... more
Background Despite Auditory Verbal Hallucinations (AVHs) have been long associated with mental illness, they represent a common experience also in the non-clinical population, yet do not exhibit distress or need for care. Objectives This paper aims to provide a systematic review of studies that investigated the relationship between auditory hallucinations, shame, and guilt in people without relevant signs of psychiatric issues. Methods We searched studies reporting information about voices characteristics, the relationship between voices and hearers, hearer's reactions, and beliefs (1946-2021) and those that explored the differences between “patients” and “non-patients”, paying peculiar attention to shame and guilt issues. Included papers were evaluated for risk of bias. Results Eleven studies that explored the relationship between AVHs, shame and guilt, were extracted. Phenomenological, pragmatic, as well as neuropsychological features of hearing voices in non-clinical populati...
he standard treatment for patients with neuromuscular respiratory failure is non-invasive ventilation (NIV) as non-invasive ventilation support-setting (NVS). NVS is administered through a nasal or face mask and/or mouthpiece with the... more
he standard treatment for patients with neuromuscular respiratory failure is non-invasive ventilation (NIV) as non-invasive ventilation support-setting (NVS). NVS is administered through a nasal or face mask and/or mouthpiece with the potential to cause nasal ulcers, discomfort, and/or aesthetic issues, resulting in poor compliance. We reported the observation of a 45-year-old woman with limb-girdle muscular dystrophy (LGMD), secondary to Dysferlin deficiency, who was on NVS since 2017 for nocturnal hypoventilation. In 2018, despite nocturnal ventilation, due to weight gain and daytime hypoventilation, a nasal mask was introduced. We initiated daytime intermittent abdominal pressure ventilation (IAPV) to mitigate cosmetic problems, improving in pO2 and decreasing in pCO2 versus baseline (52>84 mmHg, 46>33 mmHg respectively) at 6 (85 mmHg, 42 mmHg) and 18 months (93 mmHg, 38 mmHg), respectively. IAPV was effective, safe, and well-tolerated in our patients who did not tolerate s...
There is a need of consensus about the pulmonary rehabilitation (PR) in patients with COVID-19 after discharge from acute care. To facilitate the knowledge of the evidence and its translation into practice, we developed suggestions based... more
There is a need of consensus about the pulmonary rehabilitation (PR) in patients with COVID-19 after discharge from acute care. To facilitate the knowledge of the evidence and its translation into practice, we developed suggestions based on experts’ opinion. A steering committee identified areas and questions sent to experts. Other international experts participated to a RAND Delphi method in reaching consensus and proposing further suggestions. Strong agreement in suggestions was defined when the mean agreement was >7 (1 = no agreement and 9 = maximal agreement). Panelists response rate was >95%. Twenty-three questions from 4 areas: Personnel protection equipment, phenotypes, assessments, interventions, were identified and experts answered with 121 suggestions, 119 of which received high level of concordance. The evidence-based suggestions provide the clinicians with current evidence and clinical experts opinion. This framework can be used to facilitate clinical decision maki...
Background Although many studies on people with Chronic Obstructive Pulmonary Disease (COPD) have examined the mutual impact of physical status and emotional experience, there is limited knowledge about the way COPD people first-hand... more
Background Although many studies on people with Chronic Obstructive Pulmonary Disease (COPD) have examined the mutual impact of physical status and emotional experience, there is limited knowledge about the way COPD people first-hand perceive their condition. This study was designed to investigate the illness perceptions of the patients and, secondarily, to explore their beliefs about the mind-body relationship. Methods This qualitative study has exploited an ad-hoc semi-structured interview to collect personal perspectives of participants on their illness. Twenty-seven patients (15 males and 12 females), with a mild to severe COPD, were recruited within the Respiratory Rehabilitation Unit of Don Carlo Gnocchi Foundation, in Milan. The thematic analysis of the interviews’ content was facilitated by NVivo (12th version, QSR International®). Results The thematic analysis of the corpus resulted in four master themes. Illness experience has been considered the primary one. Indeed, deali...
Introduction: A few studies have explored the illness perceptions as well as the mutual connection between respiratory and physical status and emotional experiences in Chronic Obstructive Pulmonary Disease (COPD). Aims and objectives: The... more
Introduction: A few studies have explored the illness perceptions as well as the mutual connection between respiratory and physical status and emotional experiences in Chronic Obstructive Pulmonary Disease (COPD). Aims and objectives: The main aim was to investigate the illness perceptions of people affected by COPD. Secondarily, beliefs about the connection between mind and respiratory symptoms were explored. Methods: A qualitative study using ad hoc semi-structured interviews, based on the framework approach of Interpretative Phenomenological Analysis, was carried out at the Respiratory Rehabilitation Unit of Fondazione Don Carlo Gnocchi, Milan (Italy) between February and June 2018. Results: Twenty-seven participants with mild to severe COPD (15 males and 12 females; Mean Age= 72.37, SD= 9.44) were involved. The thematic analysis resulted in four master themes: \u201cillness experience\u201d, \u201cmind-body relationship\u201d, \u201cexpertise\u201d, and \u201cfuture\u201d. The major concern reported by participants was that of limitation, which contributed to their housebound and fears. These issues, together with feelings of anxiety, sadness, annoyance and nervousness, inspire to existential themes and the possible future implications. Conclusions: COPD participants believe in a strong and negative link between mind and body, whose impact on rehabilitation process, respiratory outcomes and health-related behaviours should be study further
Mindfulness and mindlessness are two relevant psychological constructs for the field of amyotrophic lateral sclerosis (ALS). When mindful, people are more open, flexible, and aware, and this attitude results in a higher psychological... more
Mindfulness and mindlessness are two relevant psychological constructs for the field of amyotrophic lateral sclerosis (ALS). When mindful, people are more open, flexible, and aware, and this attitude results in a higher psychological well-being. A mindful attitude is a source of psychological resilience for people with ALS and their caregivers. Conversely, a mindless view about the illness, reducing the whole person’s identify to the diagnosis, represents a threat to their quality of life. Furthermore, preliminary findings seem to suggest that mindfulness is associated with a slower course of the disease. In this chapter we discuss the impact that mindfulness can exert on both the quality and the quantity of life.
IntroductionAlthough ageing is generally perceived as a biologically determined process, the literature increasingly points to the importance of psychological factors in the ageing process, specifically age-related stereotypes or... more
IntroductionAlthough ageing is generally perceived as a biologically determined process, the literature increasingly points to the importance of psychological factors in the ageing process, specifically age-related stereotypes or cognitive mindsets. Such stereotypes reflect self-perceptions and others’ perceptions about the ageing process and can have a strong influence on health and life satisfaction, specifically through self-fulfilling prophecy mechanisms. This study aimed to investigate whether changes in mindsets can change the ageing process.Methods and analysisThis study replicates in large part the original 1979 ‘Counterclockwise’ experiment by Ellen Langer and will involve a group of older adults (aged 75+) taking part of a 1-week retreat outside of Milan, Italy. Participants will be instructed and helped torelivetheir younger selves, actingas ifthey are living in the year 1989. The week-long residential programme is designed to prime this perception by incorporating a comp...
The onset of L-T NIV is often considered for patients with hypercapnic respiratory failure (HRF) due to COPD during an inpatient PRP. But despite the success of NIV in treating acute COPD exacerbations, its long-term use in stable COPD is... more
The onset of L-T NIV is often considered for patients with hypercapnic respiratory failure (HRF) due to COPD during an inpatient PRP. But despite the success of NIV in treating acute COPD exacerbations, its long-term use in stable COPD is still debated. Aims: To investigate reasons for starting L-T NIV and its subsequent effects in COPD patients admitted to an inpatient PRP. Methods: Ongoing, multicentric, observational study of patients with HRF due to COPD adapted to L-T NIV during an inpatient PRP. At the time of the onset patients with alternative causes of HRF are excluded and clinical data, pulmonary function test, blood gases, sleep study and functional evaluation are collected. Preliminary Results refer to enrollment period (April 2017-December 2017):54 consecutive COPD patients were enrolled. 33 of them (mean [SD] age 73 [7,87] years, BMI of 24,55 [4,62], FEV1 34,09 % [6,36], pH 7,358[0.045], PaCO2 61 mmHg [8,41]) were eligible. 13 patients started L-T NIV for recurrent exacerbations of HRF requiring NIV; 12 for failed weaning from in hospital NIV; 4 for stable hypercapnia (PaCO2 > 55 mmHg); 3 after weaning from invasive mechanical ventilation. The mean ventilator settings were an inspiratory airway pressure of 17,7 [2,59]cmH2O, an expiratory positive airway pressure of 6,35[1,3]cmH2O and a backup rate of 12,06 [1,7] bpm. At the end of PRP patients showed a mean PH 7,405 [0,02] and mean PaCO2 51,10 mmHg [6,76]. Conclusions: Among COPD patients with HRF attending an inpatient PRP, recurrent exacerbation requiring NIV and failed weaning from hospital NIV were the most frequent reasons for starting L-T NIV
It is increasingly acknowledged that the outcomes of medical treatments are influenced by the context of the clinical encounter through the mechanisms of the placebo effect. The phenomenon of placebo analgesia might be exploited to... more
It is increasingly acknowledged that the outcomes of medical treatments are influenced by the context of the clinical encounter through the mechanisms of the placebo effect. The phenomenon of placebo analgesia might be exploited to maximize the efficacy of neurorehabilitation treatments. Since its intensity varies across neurological disorders, the Italian Consensus Conference on Pain in Neurorehabilitation (ICCP) summarized the studies on this field to provide guidance on its use. A review of the existing reviews and meta-analyses was performed to assess the magnitude of the placebo effect in disorders that may undergo neurorehabilitation treatment. The search was performed on Pubmed using placebo, pain, and the names of neurological disorders as keywords. Methodological quality was assessed using a pre-existing checklist. Data about the magnitude of the placebo effect were extracted from the included reviews and were commented in a narrative form. 11 articles were included in this...
People with Chronic Obstructive Pulmonary Disease (COPD) suffer from dyspnoea, which may be increased by anxiety. Previous studies suggest that relaxation techniques may have positive effects in pulmonary rehabilitation. The main aim of... more
People with Chronic Obstructive Pulmonary Disease (COPD) suffer from dyspnoea, which may be increased by anxiety. Previous studies suggest that relaxation techniques may have positive effects in pulmonary rehabilitation. The main aim of this study is to explore the clinical impact of a quick, one-session, relaxation training for people with COPD. In this perspective, 38 participants with COPD were recruited and randomly assigned to listen to a relaxing audio or to watch a neutral stimulus, during their routine exams. Participants were assessed for psychological and physiological variables, analysed through non-parametric tests. Those who joined the relaxation training showed more positive outcomes about respiratory and cardiac assessments, as well as for state anxiety and positive affections, in comparison with the baseline and the control group. Study results suggest that relaxation has a potential to produce improvements in respiratory and cardiac functions, together with a positi...
In patients with amyotrophic lateral sclerosis (ALS), non-invasive ventilation (NIV) is usually initiated in an in-hospital regime. We investigated if NIV initiated in an outpatient setting can be as effective as regards patients'... more
In patients with amyotrophic lateral sclerosis (ALS), non-invasive ventilation (NIV) is usually initiated in an in-hospital regime. We investigated if NIV initiated in an outpatient setting can be as effective as regards patients' acceptance/adherence. We also evaluated factors predicting NIV acceptance and adherence and disease progression. Prospective randomized study. outpatient vs inpatient rehabilitation. ALS patients. ALS patients were randomized to two groups for NIV initiation: outpatient vs. inpatient. At baseline (T0), end of NIV trial program (T1) and after 3 months from T1 (T2), respiratory function tests, blood gas analysis, and sleep study were performed. At T1, we assessed: NIV acceptance (>4 h/night), and dyspnea symptoms (day/night) by Visual analogue scale (VAS), staff and patients' experience (how difficult NIV was to accept, how difficult ventilator was to manage, satisfaction); at T2: NIV adherence (>120 h/month) and patients' experience. Fifty...
People with chronic obstructive pulmonary disease (COPD) sometimes experience anxiety, depression and comorbid cognitive deficits. Rather than being merely a consequence of symptom-related physical impairments these additional problems... more
People with chronic obstructive pulmonary disease (COPD) sometimes experience anxiety, depression and comorbid cognitive deficits. Rather than being merely a consequence of symptom-related physical impairments these additional problems may be part of the clinical course of the condition. The relationship between the physical and psychological aspects of the condition is illustrated by the patterns of use of non-invasive ventilation (NIV); NIV is often rejected or used inappropriately, resulting in clinical deterioration and an increase in health care costs. The study aims to analyse the effects of psychological support on the acceptance of, and adherence to, NIV. The primary outcome will be a latent variable related to indices of use of NIV equipment and adherence to treatment regime; while survival rates and psychological variables will constitute the secondary outcomes. A two-arm randomised controlled trial will be conducted. We aim to recruit 150 COPD patients for whom NIV is ind...
Background: The rejection or inappropriate usage of Non Invasive Ventilation (NIV) resulting unsuccessful treatments and in higher health care costs. Currently, there is a lack of a standardized instrument that assess NIV adherence. Aims... more
Background: The rejection or inappropriate usage of Non Invasive Ventilation (NIV) resulting unsuccessful treatments and in higher health care costs. Currently, there is a lack of a standardized instrument that assess NIV adherence. Aims and objectives: The main aim of this study is the development of the Beliefs about Ventilation Questionnaire (BVQ). Methods: The authors generated and randomized a list of statements patients have made about ventilation according to the scientific literature and clinical experience. The 25-item questionnaire was developed in Italian and translated in English, French and Spanish. A questionnaire based-survey was handed out to all inpatients and outpatients who are recommended to NIV usewith obstructive or restrictive respiratory diseases. Fifty-three participants were recruited at HD Respiratory Rehabilitation of Fondazione Don Carlo Gnocchi, in Milan (Italy). Data collected were analyzed through factor analysis and structural equation models. Convergent validity with the actual utilization hours were assessed, as well as correlations with quality of life indexes. The BVQ was self-administered by the patients, in an Italian format.Each questionnaire took approximately fifteen minutes to complete. Results: The BVQ was administered to 53 consecutive participants referred to NIV use. A preliminary exploratory factor analysis provided good internal consistency and convergent validity, and acceptable to good test–retest reliability. Internal consistency was good (Cronbach9s alpha >0,694). Conclusions: The BVQ should prove useful for researchers and clinicians interested in adherence to NIV.
Introduction. Chronic Obstructive Pulmonary Disease (COPD) people suffer from severe physical impairments, which often elicit significant psychological distress and impact their quality of life. This meta-analysis aimed to assess evidence... more
Introduction. Chronic Obstructive Pulmonary Disease (COPD) people suffer from severe physical impairments, which often elicit significant psychological distress and impact their quality of life. This meta-analysis aimed to assess evidence from the scientific literature on the effects of relaxation techniques.Methods. We investigated 9 databases to select 25 RCTs. Studies included both inpatients and outpatients with COPD. Both respiratory and psychological outcomes were considered.Results. Relaxation techniques showed a little positive effect on the value of the percentage of predicted FEV1(d=0.20; 95% Cl: 0.40–−0.01) as well as a slight effect on levels of both the anxiety (d=0.26; 95% Cl: 0.42–0.10) and depression (d=0.33; 95% Cl: 0.53–0.13). The higher effect size was found in the quality of life value (d=0.38; 95% Cl: 0.51–0.24). The assessed quality of the studies, based on the PEDro Scale, was generally medium/high.Conclusion. Relaxation training can have a moderate impact on ...
Background: Adaptation to Non-Invasive Ventilation (NIV) in Amyotrophic Lateral Sclerosis (ALS) is generally implemented in an inpatient or outpatient setting.Aims: To investigate whether adaptation to home-based NIV is as effective as... more
Background: Adaptation to Non-Invasive Ventilation (NIV) in Amyotrophic Lateral Sclerosis (ALS) is generally implemented in an inpatient or outpatient setting.Aims: To investigate whether adaptation to home-based NIV is as effective as outpatient one in ALS in terms of arterial carbon dioxide (PaCO2) improvement. We also evaluated as secondary outcomes NIV acceptance, adherence and patient/caregiver satisfaction, quality of life (QoL) and caregiver burden.Methods: Sixty-six ALS patients with indication for NIV were randomly assigned to two groups: 34 underwent NIV initiation at home (Home Adaptation, HA) and 32 at multiple outpatient visits (Outpatient Adaptation, OA). Respiratory function tests were performed at baseline (T0) together with blood gas analysis, which was repeated at the end of adaptation (T1) and after 2 and 6 months from T1. Overnight cardiorespiratory polygraphy was performed at T0, T2, and T3. NIV acceptance (≥5 hours/night for 3 consecutive nights) and patient&#3...
Forced vital capacity (FVC) <80% is one of the key indications for starting non-invasive ventilation (NIV) in amyotrophic lateral sclerosis (ALS). We hypothesized that a very early start of NIV could lengthen the free interval before... more
Forced vital capacity (FVC) <80% is one of the key indications for starting non-invasive ventilation (NIV) in amyotrophic lateral sclerosis (ALS). We hypothesized that a very early start of NIV could lengthen the free interval before death compared to later-start NIV; we also evaluated (secondary outcome) the survival rate of patients on NIV without tracheotomy. This retrospective study was conducted on 194 ALS patients, divided into: a Later group (LG) with FVC<80% at NIV prescription (n = 129) and a Very Early Group (VEG) with FVC≥80% at NIV prescription (n = 65). We compared clinical and respiratory functional data and time free to death between groups over a 3-year follow-up. At 36 months from diagnosis, mortality was 35% for VEG vs. 52.7% for LG (p = 0.022). Kaplan-Meier survival curves adjusted for tracheotomy showed a lower probability of death (p = 0.001) for VEG as a whole (p = 0.001) and for the non-bulbar (NB) subgroup (p = 0.007). Very early NIV was protective of s...
Introduction. Chronic Obstructive Pulmonary Disease (COPD) people suffer from severe physical impairments, which often elicit significant psychological distress and impact their quality of life. This meta-analysis aimed to assess evidence... more
Introduction. Chronic Obstructive Pulmonary Disease (COPD) people suffer from severe physical impairments, which often elicit significant psychological distress and impact their quality of life. This meta-analysis aimed to assess evidence from the scientific literature on the effects of relaxation techniques. Methods. We investigated 9 databases to select 25 RCTs. Studies included both inpatients and outpatients with COPD. Both respiratory and psychological outcomes were considered. Results. Relaxation techniques showed a little positive effect on the value of the percentage of predicted FEV 1 (í µí±‘ = 0.20; 95% Cl: 0.40–−0.01) as well as a slight effect on levels of both the anxiety (í µí±‘ = 0.26; 95% Cl: 0.42–0.10) and depression (í µí±‘ = 0.33; 95% Cl: 0.53–0.13). The higher effect size was found in the quality of life value (í µí±‘ = 0.38; 95% Cl: 0.51–0.24). The assessed quality of the studies, based on the PEDro Scale, was generally medium/high. Conclusion. Relaxation training can have a moderate impact on both psychological well-being and respiratory function, resulting in noticeable improvements in both. Although higher quality research is required, our results sustain the importance of relaxation techniques as a tool to manage COPD.
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