A substrate-specific mTORC1 pathway underlies Birt-Hogg-Dubé syndrome.

The mechanistic target of rapamycin complex 1 (mTORC1) is a key metabolic hub that controls the cellular response to environmental cues by exerting its kinase activity on multiple substrates1-3. However, whether mTORC1 responds to diverse stimuli by differentially phosphorylating specific substrates is poorly understood. Here we show that transcription factor EB (TFEB), a master regulator of lysosomal biogenesis and autophagy4,5, is phosphorylated by mTORC1 via a substrate-specific mechanism that is mediated by Rag GTPases. Owing to this mechanism, the phosphorylation of TFEB-unlike other substrates of mTORC1, such as S6K and 4E-BP1- is strictly dependent on the amino-acid-mediated activation of RagC and RagD GTPases, but is insensitive to RHEB activity induced by growth factors. This mechanism has a crucial role in Birt-Hogg-Dubé syndrome, a disorder that is caused by mutations in the RagC and RagD activator folliculin (FLCN) and is characterized by benign skin tumours, lung and kidney cysts and renal cell carcinoma6,7. We found that constitutive activation of TFEB is the main driver of the kidney abnormalities and mTORC1 hyperactivity in a mouse model of Birt-Hogg-Dubé syndrome. Accordingly, depletion of TFEB in kidneys of these mice fully rescued the disease phenotype and associated lethality, and normalized mTORC1 activity. Our findings identify a mechanism that enables differential phosphorylation of mTORC1 substrates, the dysregulation of which leads to kidney cysts and cancer.

Contributing to self-care of a person with chronic obstructive pulmonary disease: A qualitative study of the experiences of family caregivers.

AIM: To explore family caregivers' experiences of contributing to self-care of patients with chronic obstructive pulmonary disease (COPD). DESIGN: A qualitative description study. METHODS: Individual semi-structured interviews were conducted face-to face, by telephone or video calls in a purposive sample of 17 family caregivers of patients with COPD recruited in Italy, and analysed through content analysis. The consolidated criteria for reporting qualitative studies (COREQ) checklist was used for study reporting. RESULTS: Ten subcategories were derived from 106 codes grouped into three main categories: family caregiver contributions to maintaining disease stable and ensuring a normal life for patients; family caregiver contributions to disease monitoring; and family caregiver contributions to coping with disease exacerbations. Family caregivers provided practical and emotional support, and their contribution was essential to improve treatment adherence, to enable the patient to continue living a normal life, and to have access to the healthcare services. Family caregivers were constantly vigilant and monitored patients daily to detect worsening conditions, and they managed exacerbations especially when patients were unable to do it due to their critical conditions. CONCLUSION: This study broadens knowledge of family caregivers' contributions to patients' self-care in COPD, describing the different ways family members provide daily care to patients and the many responsibilities they take on. IMPACT: Family caregivers perform a variety of behaviours when supporting patients with COPD in self-care, especially when patients are more dependent and the disease more severe. Nurses should acknowledge the various contributions provided by family caregivers and develop educational interventions aiming to support them in patient care and improve patient outcomes. PATIENT OR PUBLIC CONTRIBUTION: Researchers shared the draft study report with participants for validation and feedback. This helped to strengthen the study design and results.

Generic and disease-specific caregiver contribution to self-care in a population with multiple chronic conditions: A comparative study.

AIM: Describe and compare generic and disease-specific caregiver contribution (CC) to self-care behaviours in the dimensions of self-care maintenance, self-care monitoring and self-care management in multiple chronic conditions (MCCs). DESIGN: Multicentre cross-sectional study. METHODS: We enrolled caregivers of patients with MCC, from April 2017 to November 2022, if they were (a) 18 years of age or older and (b) identified by the patient as the principal unpaid informal caregiver. The Caregiver Contribution to Self-Care of Chronic Illness Inventory, Caregiver Contribution to Self-Care of Heart Failure Index, Caregiver Contribution to Self-Care of COPD Inventory and Caregiver Contribution to Self-care of Diabetes Inventory were used to measure generic and disease-specific contribution to patient self-care. Descriptive statistics, Student's t-tests and Pearson's correlation coefficients were used. RESULTS: We found adequate generic CC for self-care monitoring but inadequate CC in self-care maintenance and management. All CC to disease-specific self-care maintenance, monitoring and management scales' scores were inadequate, except for caregivers of diabetic patients in which we observed an adequate score in the CC to self-care maintenance and self-care management scales in those practice insulin therapy. CONCLUSION: Caregivers experience difficulties in performing behaviours of contribution to their patients affected by chronic conditions. Caregivers of patients with MCCs contribute more to self-care in aspects related to provider prescriptions and less to lifestyle changes. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Healthcare professionals have to know in which behaviours caregivers show gaps and reflect on the reasons for poor CC to self-care to develop interventions to enhance these behaviours. IMPACT: This study underlines the importance of choosing the most appropriate instrument for measuring CC to self-care, considering the caregiver's characteristics. REPORTING METHOD: We adhered to STROBE guidelines. PATIENT OR PUBLIC CONTRIBUTION: Caregivers of patients affected by MCCs were enrolled.

Psychometric properties of the Chinese version of the Self-Care in Chronic Obstructive Pulmonary Disease Inventory based on the Middle-Range Theory of Self-Care of Chronic Illness.

AIMS: To test the psychometric properties of the Chinese version of the Self-Care in Chronic Obstructive Pulmonary Disease Inventory on a sample of patients with chronic obstructive pulmonary disease in China. BACKGROUND: Measuring the self-care of patients with chronic obstructive pulmonary disease is vital to promote the performance of effective self-care behaviours. However, few instruments have been developed to measure self-care in chronic obstructive pulmonary disease, and the existing instruments lack theoretical support and satisfactory psychometrics properties. The Self-Care in Chronic Obstructive Pulmonary Disease Inventory based on Middle-Range Theory of Self-Care of Chronic Illness has been developed and tested previously in Italian and US population. DESIGN: A cross-sectional instrument development study. METHODS: Construct validity was tested by confirmatory factor analysis and hypothesis testing, and reliability internal consistency using factor score determinacy coefficients. RESULTS: A convenience sample of 185 patients with chronic obstructive pulmonary disease was recruited from September 2020 to January 2022. The instrument consists of three scales: self-care maintenance, self-care monitoring and self-care management. Confirmatory factor analysis performed on the three scales produced good fit indices. The internal consistency was adequate with factor score determinacy coefficients ranging from 0.891 to 0.953 in Self-Care Maintenance Scale, 0.990 to 0.993 in Self-Care Monitoring Scale and 0.750 to 0.976 in Self-Care Management Scale. CONCLUSIONS: The Chinese version of the Self-Care in Chronic Obstructive Pulmonary Disease Inventory has acceptable reliability and validity. Some differences from the original instrument were identified. Further validation studies should be conducted to confirm the psychometric properties of the instrument in Chinese population.

The influence of social support on self-care is mediated by self-efficacy and depression in chronic illness: key findings from the 'SODALITY' observational study.

Objectives: Family is a major source of support for older chronically-ill patients and known to be associated with better self-care. Depression and self-care self-efficacy are associated with healthy behaviors and thus may serve as mechanisms by which family support influences self-care.We explored depression and self-care self-efficacy as mediators of the relationship between perceived family support and self-care.Methods: Five hundred forty-one older adults with multiple chronic illnesses were recruited from outpatients and community settings. Three structural equation models (SEM) were fit on cross-sectional data. We measured perceived family support (subscale of the Multidimensional Scale of Perceived Social Support, scores range 1-7), depression (Patient Health Questionnaire, scores range 0-27), selfcare self-efficacy (Self-Care Self Efficacy Scale, standardized scores range 0-100), and self-care maintenance, monitoring, and management (Self-care of Chronic Illness Inventory, standardized scores range 0-100).Results: Participants (mean age = 76.6±7.3 yrs) were predominantly females (55.6%). In the full sample, depression and self-care self-efficacy mediated the relationship between perceived family support and self-care; in the gender-stratified SEM, men's depression was no longer a significant mediator. Depression and self-care self-efficacy were significant mediators of the relation between perceived family support and self-care.Conclusion: In older chronically-ill patients, interventions addressing perceived family support may facilitate a rapid improvement in self-care self-efficacy and a decrease in depressive symptoms, particularly among women.

The influence of dyad sex combination on patient self-care and caregiver contribution to self-care in multiple chronic conditions: An observational study.

INTRODUCTION: We know that patient and caregiver sex influence patient self-care and caregiver contribution to self-care in multiple chronic conditions. However, the role of dyad sex combination (e.g., male patient and female caregiver, female patient and male caregiver, male patient and caregiver, and female patient and caregiver) in influencing patient self-care and caregiver contribution to self-care remains unexplored. Our aim was to investigate the relationship between patient and caregiver sex combination and patient self-care and caregiver contribution to self-care in multiple chronic conditions. DESIGN: Multicentre cross-sectional study. METHODS: We enrolled patients with multiple chronic conditions and caregiver dyads in outpatient and community settings from April 2017 to December 2019. We used the Self-Care of Chronic Illness Inventory and the Caregiver Contribution to Self-Care of Chronic Illness Inventory that measure, from the patient and caregiver perspective, self-care maintenance (i.e., behaviors to maintain illness stability), self-care monitoring (i.e., monitoring of illness signs and symptoms), and self-care management (i.e., behaviors to manage signs and symptoms). We used multivariate analysis of covariance to evaluate the association between sex and self-care and caregiver contribution to self-care. RESULTS: We recruited 540 patient-caregiver dyads. Male patients cared by female caregivers performed higher self-care maintenance compared to female patients cared by female caregivers. Female caregivers caring for female patients performed higher caregiver contribution to self-care monitoring compared to male caregivers caring for female or male patients. CONCLUSIONS: Clinicians should consider the influence of patient and caregiver sex combination on self-care and caregiver contribution to self-care in multiple chronic conditions to provide tailored interventions. CLINICAL RELEVANCE: Healthcare professionals should consider the patient and caregiver sex combination in the dyad to tailor better interventions aimed at improving patient self-care and caregiver contribution to self-care in multiple chronic conditions.

Disease-related knowledge in people with chronic obstructive pulmonary disease and their informal caregivers: A multilevel modelling analysis.

AIMS AND OBJECTIVES: To assess the level of chronic obstructive pulmonary disease (COPD)-related knowledge within patient and informal caregiver dyads, and to identify factors influencing the knowledge level considering the interdependence within the dyads. BACKGROUND: Patients with COPD and their informal caregivers present poor disease knowledge and different characteristics are associated with their level of knowledge. Disease knowledge and related characteristics have been assessed separately in patients and informal caregivers, without considering possible influence within the dyads. DESIGN: Cross-sectional study. METHODS: A convenience sample of dyads was recruited in outpatient and inpatient settings in Central and South Italy. The Bristol COPD Knowledge Questionnaire was used to measure disease knowledge. Sociodemographic, clinical and caregiving characteristics, self-efficacy and depression were measured in patients and caregivers. Multilevel modelling was used to analyse COPD knowledge at the level of the dyad to control for interdependency between patients and informal caregivers. The STROBE guidelines for cross-sectional studies were followed for study reporting. RESULTS: We recruited 133 dyads. The total level of correct knowledge shared by dyads was 32.89%. Dyads presented higher levels of correct knowledge about disease symptoms, smoking cessation and vaccination, and lower about COPD treatment. Younger patients with greater self-efficacy, who attended pulmonary rehabilitation and were cared for by a spouse/partner with low levels of depression, and informal caregivers who were patients' spouse/partner were more likely to have higher levels of disease-related knowledge. CONCLUSIONS: Our study advances dyadic research in COPD. Future studies should investigate the effects of shared knowledge and incongruent knowledge (where one member knows more than the other) on patient self-care and caregiver contribution to patient self-care. RELEVANCE TO CLINICAL PRACTICE: Our study shows what knowledge nurses should provide in educational programmes directed at patients and caregivers, and which dyads have greater knowledge deficits, to whom offer targeted educational interventions.

Patient Self-Care and Caregiver Contribution to Patient Self-Care of Chronic Conditions: What Is Dyadic and What It Is Not.

OBJECTIVES: Self-care of chronic conditions involves both patients and their informal caregivers and therefore might be considered as a dyadic phenomenon. Nevertheless, empirical evidence supporting a dyadic construct is unavailable. This study aimed to explore the existence of a dyadic construct in self-care maintenance, monitoring, and management in patients affected by chronic conditions and their informal caregivers. METHODS: This study used a cross-sectional design. We used the Self-Care of Chronic Illness Inventory and the Caregiver Contribution to Self-Care of Chronic Illness Inventory, which measure patient self-care and informal caregivers' contribution to self-care maintenance, monitoring and management. Exploratory Structural Equation Modeling was performed to verify the existence of dyadic latent constructs in each scale in patients and informal caregivers. RESULTS: A convenience sample of 493 patients and informal caregivers, with a mean age of 76.47 and 52.76 years, respectively, was studied. In the self-care maintenance scales, 2 correlated factors (r = 0.34, P < .001) were identified, indicating the presence of a dyadic second-order construct. In addition, 2 factors that were not correlated (r = 0.11, P = .064) were identified in the self-care monitoring scales, indicating the absence of a dyadic construct. Finally, we found a 3-factor model in the self-care management scales composed of both patient and caregiver items, indicating a dyadic first-order construct. CONCLUSIONS: Knowing which care behaviors are dyadic in chronic conditions is important for tailoring interventions to improve self-care. Self-care maintenance and management would benefit from dyadic interventions, while self-care monitoring would not. The results of this study may illuminate future theoretical and scientific developments in dyadic care of chronic illness.

Self-care of patients with multiple chronic conditions and their caregivers during the COVID-19 pandemic: A qualitative descriptive study.

AIMS: Explore the self-care experiences of patients with multiple chronic conditions (MCCs) and caregivers' contributions to patient self-care during COVID-19 pandemic. DESIGN: A descriptive qualitative design was used. The COREQ checklist was used for study reporting. METHODS: Individual semi-structured interviews were used to collect data from patients with MCCs and caregivers selected from the dataset of an ongoing longitudinal study. Data analysis was performed through deductive thematic analysis. The middle-range theory of self-care of chronic illness, which entails the three dimensions of self-care maintenance, monitoring and management, was used as a theoretical framework to guide data collection and analysis. RESULTS: A total of 16 patients and 25 caregivers were interviewed from May to June 2020. The participants were mainly women, with a mean age for patients of 76.25 years and caregivers of 45.76 years; the caregivers were mainly the patients' children (72%). During the pandemic, some patients reported remaining unchanged in their self-care maintenance, monitoring and management behaviours, others intensified their behaviours, and others decreased them. Caregivers played an important role in protecting patients from the risk of contagion COVID-19 and in ensuring patients' self-care of chronic diseases through direct and indirect interventions. CONCLUSIONS: Critical events can modify the self-care experiences of chronically ill patients and caregivers' contributions, leading to maintenance, increase or decrease of self-care and contributions to self-care behaviours. IMPACT: Patients with MCCs and their caregivers can react in different ways in their performances of self-care and contribution to patients' self-care behaviours when ordinary daily life is disrupted; therefore, nurses should assess such performances during critical events to identify the individuals at risk of reduced self-care and promote the most suitable healthcare services (e.g. eHealth) to implement individualised interventions.

Development and Psychometric Testing of the Caregiver Self-Efficacy in Contributing to Patient Self-Care Scale.

OBJECTIVES: Caregiver self-efficacy-a caregiver's belief in his/her ability to contribute to patient self-care-is associated with better patient and caregiver outcomes in single chronic conditions. It is, however, unknown if caregiver self-efficacy improves patient and caregiver outcomes in multiple chronic conditions (MCCs) because there is no instrument to measure this variable. We developed the 10-item Caregiver Self-Efficacy in Contributing to patient Self-Care (CSE-CSC) scale for that purpose, and we tested its psychometric characteristics in caregivers of patients with MCCs. METHODS: In this cross-sectional multisite study, we tested the structural validity of the CSE-CSC scale with exploratory and confirmatory factor analysis, and we tested construct validity by correlating CSE-CSC scores with those of the Caregiver Contributions to Self-Care of Chronic Illness Inventory. We also tested reliability, and precision of the CSE-CSC scale. RESULTS: The 358 enrolled caregivers (mean age 54.6 years; 71.5% female) cared for patients with an average of 3.2 chronic conditions. Structural validity was good, and it showed 2 factors within the scale. Construct validity showed significant correlations between scores of the CSE-CSC scale and the Caregiver Contributions to Self-Care of Chronic Illness Inventory. Reliability coefficients were between 0.90 and 0.97. Measurement error yielded satisfactory results. CONCLUSIONS: The CSE-CSC scale is valid, reliable, and precise in measuring caregiver self-efficacy in contributing to patient self-care in MCCs. Because caregiver self-efficacy is a modifiable variable, the CSE-CSC scale can be used in clinical practice and research to improve patient and caregiver outcomes.

Development and psychometric testing of the care dependence perception questionnaire.

OBJECTIVE: This multicentre study aimed to develop a measure of the perception of care dependence in patients diagnosed with cancer and to test its psychometric properties. METHODS: The questionnaire was developed based on findings emerged from a meta-synthesis and from qualitative studies conducted in three hospitals in Italy. The draft questionnaire was tested for face and content validity and pilot-tested with patients. The questionnaire was completed by care-dependent patients with cancer. Test-retest was conducted to verify stability. Exploratory factor analysis (EFA) was performed using a Maximum Likelihood robust estimator. RESULTS AND CONCLUSION: The Scale-Content Validity Index was 0.92. The final 15-item questionnaire was completed by 208 patients admitted to two hospitals. The EFA yielded a two-factor model including a positive and a negative perception of care dependence. Factor score determinacy coefficients, Cronbach's alpha coefficients, composite reliability coefficients and Intraclass Correlations Coefficients yielded satisfactory results confirming internal consistency and stability. The hedonic balance score is also available as a single indicator of subjective well-being. The study provides initial validation of the Care DEeP Questionnaire that can be used by cancer nurses to assess positive and negative patient experiences with care dependence and to personalise and improve their care.

Caregivers' experiences of contributing to patients' self-care in Chronic Obstructive Pulmonary Disease: A thematic synthesis of qualitative studies.

AIM: To identify, analyze and synthesize qualitative studies on caregivers' experiences of contributions to the self-care of patients with Chronic Obstructive Pulmonary Disease (COPD). BACKGROUND: COPD patients perform daily self-care behaviours to manage the disease. With aging and disease progression, patients need to rely on the contributions of informal caregivers, usually family members, for disease management. Caregivers' normal or habitual contributions to patients' self-care have not yet been completely investigated. DESIGN: Thematic synthesis of qualitative studies. DATA SOURCES: CINAHL, EMBASE, PubMed, PsycINFO, Web of Science, Scopus, Emcare and OpenGrey databases were searched from inception to September 2020. The search was restricted to English-language papers. REVIEW METHODS: Studies were critically appraised using the Critical Appraisal Skills Programme checklist. The initial line-by-line codes were aggregated into descriptive themes from which analytical themes were derived. RESULTS: Fifteen papers from nine countries, published 2009-2020, were included. Six analytical themes encompassing 22 descriptive themes were identified and grouped in two overarching themes describing caregivers' experiences of contributions to patients' self-care during the stable and exacerbation phases of COPD. In the stable phases, caregivers contribute through maintaining disease stability, promoting healthy behaviours, fostering normal life and helping perform daily activities. During exacerbations, caregivers contribute through assessing, monitoring and managing symptoms in collaboration with patients or autonomously. They contribute by performing actions, motivating patients, organizing care, sensing variations in symptoms, acquiring knowledge and educating patients, making decisions, communicating and collaborating with healthcare providers and patients and advocating for patients. CONCLUSION: This thematic synthesis enlarges knowledge of caregivers' contributions to patients' self-care in COPD, detailing the ways by which caregivers provide care to patients. IMPACT: Contributing daily to the self-care of a family member with COPD is a complex experience. Nurses need to acknowledge the importance of caregivers' contributions to patient disease management and develop effective educational interventions to support them.

Characteristics of dyadic care types among patients living with multiple chronic conditions and their informal caregivers.

AIMS: To examine the distribution of dyadic care types in multiple chronic conditions, compare self-care and caregiver contributions to patients' self-care in each care type and identify the patient and caregiver characteristics associated with each care type. DESIGN: Secondary analysis of a multicentre, cross-sectional study. METHODS: Patient-caregiver dyads were enrolled from outpatient clinics and community settings. The Dyadic Symptom Management Type Scale was used to categorize dyads by type. Self-care, self-efficacy, comorbidities and cognitive impairment were measured in patients, whereas caregiver contributions to patient self-care, self-efficacy, caregiver burden and hours of caregiving were measured in caregivers. Sociodemographic characteristics perceived social support and mutuality were measured in both patients and caregivers. Univariate and multivariate analyses were performed. RESULTS: A sample of 541 patient-caregiver dyads was examined. The most frequent dyadic care type was the collaborative-oriented (63%). In the patient-oriented type, patients scored higher on self-care compared with caregivers; in the caregiver-oriented and collaborative types, caregivers scored higher than patients supporting the typology. The patient-oriented type was associated with younger, healthier male patients with better cognitive status, who scored higher for mutuality and whose caregivers scored lower for burden. The caregiver-oriented type was associated with older, less educated patients, with caregivers experiencing higher burden and unemployment. The collaborative type was associated with sicker patients, with the caregiver more probably to be female and employed, with higher perceived social support, mutuality and burden. The incongruent dyadic care type was associated with lower caregiver mutuality. IMPACT: In the context of multiple chronic conditions, clinicians should consider targeting any educational interventions aimed at improving patient self-care and caregiver contributions to self-care by dyadic care types.

Cross-cultural applicability of the Self-Care Self-Efficacy Scale in a multi-national study.

AIM: The Self-Care Self-Efficacy Scale (SCSES) was newly developed as a self-report measure for self-care self-efficacy for chronic illness. This study investigated its measurement equivalence (ME) in different cultural groups, including United States, China (Hong Kong), Italy, and Brazil. DESIGN: A multi-national study for cross-cultural validation of the Scale. METHODS: From January 2015 - December 2018, investigators recruited 957 patients (United State: 200; Hong Kong: 300; Italy: 285; and Brazil: 142) with chronic illness from inpatient and outpatient settings. The SCSES was administered and clinical and demographic data were collected from participants. Based on the Meredith framework, multi-group confirmatory factor analysis evaluated the configural, metric, scalar, and strict invariance of the scale across the four populations through a series of nested models, with evaluation of reliability and coherence of the factor solution. RESULTS: The mean ages of the groups ranged from 65-77 years, 56.4% was male. The Cronbach's alpha coefficients of the single-factor SCSES were 0.93, 0.89, 0.92, and 0.90 for the United States, China (Hong Kong), Italy, and Brazil, respectively. Three of the four levels of ME were partially or totally supported. The highest level achieved was partial scalar invariance level (χ2 [52] = 313.4, p < 0.001; RMSEA = 0.067; 95% CI = 0.056-0.077; CFI = 0.966; TLI = 0.960, SRMR = 0.080). CONCLUSION: Patients from the four countries shared the same philosophical orientation towards scale items, although some of the items contributed differently to represent the concept and participants shared the same schemata for score interpretation. IMPACT: Self-efficacy is important in producing effective and sustainable self-care behavioural changes. Cultural ideation shapes the ways individuals interpret and report their self-care self-efficacy. The study findings support cross-cultural and cross-national utility of the SCSES for research on self-care across United States, China (Hong Kong), Italy, and Brazil.

Distancing Measures in COVID-19 Pandemic: Loneliness, More than Physical Isolation, Affects Health Status and Psycho-Cognitive Wellbeing in Elderly Patients with Chronic Obstructive Pulmonary Disease.

Since the outbreak of the SARS-CoV-2 pandemic in 2020, many governments have been imposing confinement and physical distancing measures. No data exist on the effects of lockdowns on the health status of patients affected by chronic pathologies, specifically those with Chronic Obstructive Pulmonary Disease (COPD). Our study aims to establish variations across the psychological and cognitive profile of patients during the isolation period in Italy, in a cohort of patients affected by COPD, between February and May 2020. Forty patients with established COPD were comprehensively evaluated by geriatric multidimensional assessment before the spread of the epidemic in Italy, and submitted to a second evaluation during the subsequent lockdown. We assessed functional ability, basic and instrumental Activities of Daily Living (ADL and IADL), cognition and mood status. We compared the scores obtained at baseline against those obtained during the pandemic, and used mean differences for correlation with major clinical and functional indexes. The score differences from MMSE, ADL and IADL were statistically significant. Such differences were correlated to the presence of a caregiver and to the total number of family members living together. Remarkably, the loneliness dimension, more than the restrictions themselves, seemed to represent the major determinant of altered health status and depressed psycho-cognitive profile in our population. Also remarkably, we detected no correlation between the score variation and the respiratory function indexes of disease severity. The isolation measures adopted during the SARS-CoV-2 pandemic have triggered the classic clinical string associated to geriatric isolation, which leads to a deterioration of cognitive functions, independence and frailty levels in a population affected by a chronic degenerative disease, such as COPD. If considered from a multidimensional geriatric point of view, the individual benefit of isolation measures could be small or non-existent.

Finding meaning in life: an exploration on the experiences with dependence on care of patients with advanced cancer and nurses caring for them.

PURPOSE: Patients with advanced cancer are likely to face increasing levels of care dependence. Adult patients who become care dependent on others can experience this condition as one of suffering and humiliation. The nurse-patient relationship plays a key role in the experience of dependence. Understanding patients' and nurses' perceptions of care dependence is crucial to addressing the impact it has on the lives of both. The aim of this study is to explore the experiences of patients with cancer and nurses caring for them. METHODS: A multicentre qualitative study was conducted in Italy using semi-structured interviews with patients with advanced cancer admitted to 3 hospitals, and 9 focus groups with nurses working in oncology wards of 2 hospitals. Data were analysed with inductive content analysis. RESULTS: Thirty-two patients and 44 nurses participated in the study. Three common themes were identified: within dependence, the relationship is a lifeline; dependence is influenced by internal and external factors and dependence generates changes. Dependence impacts on patients' and nurses' lives and implies a process of personal maturing for both. Patients learn the humility to ask for help by exposing their vulnerability. Nurses become aware that a trusting relationship helps patients to accept dependence, and they learn to self-transcend in order to build it. CONCLUSIONS: Striving to build positive relationships implies a change in nurses' and patients' lives. In this way, they come to understand important aspects of life and find meaning in difficult situations. Further studies should explore also homecare settings and patients' families.

Depression and self-care in older adults with multiple chronic conditions: A multivariate analysis.

AIMS: To investigate the relationship between depression and self-care behaviours in older individuals with multimorbidity. DESIGN: Cross-sectional study. Data were collected between April 2017 - June 2019. METHODS: Patients were enrolled from community and outpatient settings and included if they were ≥65 years, affected by heart failure, diabetes mellitus or chronic obstructive pulmonary disease and at least another chronic condition. They were excluded if they had dementia and/or cancer. Patient Health Questionnaire-9 was used to measure depression and Self-Care of Chronic Illness Inventory was used to measure self-care maintenance, monitoring, and management. The relationship between depression and self-care was evaluated by performing two sets of univariate analyses, followed by multivariate and step-down analyses. The second set was performed to control for the number of chronic conditions, age, and cognitive function. RESULTS: The sample (N = 366) was mostly female (54.2%), with a mean age of 76.4 years. Most participants (65.6%) had mild to very severe depressive symptoms. Preliminary analysis indicated a significant negative association between depression and self-care maintenance and monitoring and a significant negative association between depression and multivariate self-care. Step-down analysis showed that self-care maintenance was the only dimension negatively associated with depression, even after controlling for the number of chronic conditions, age, and cognitive function. CONCLUSION: In multimorbid populations, depression is more likely to be associated with self-care maintenance than the other self-care dimensions. Therefore, self-care maintenance behaviours (e.g., physical activity and medication adherence) should be prioritized in assessment and focused on when developing interventions targeting depressed older adults with multimorbidity. IMPACT: The results of this study may help guide clinical practice. In patients with depressive symptoms, self-care maintenance behaviours should be assessed first, as a potential first indicator of poor self-care.

Psychometric characteristics of the caregiver contribution to self-care of chronic illness inventory.

AIM: The purpose of the this study was to test the factorial structure, internal consistency reliability and concurrent validity of the Caregiver Contribution to Self-Care Chronic Illness Inventory. BACKGROUND: Existing measures of caregiver contribution to self-care are disease-specific or behaviour-specific; no generic measures exist. DESIGN: A cross-sectional study. METHOD: Between April 2017 - December 2018, we enrolled a convenience sample of 358 patients with chronic illnesses and their caregivers. Patients completed the Self-Care of Chronic Illness Inventory while caregivers completed the Caregiver Contribution to Self-Care of Chronic Illness Inventory, a modification of the Self-Care of Chronic Illness Inventory, which includes three scales as follows: the Caregiver Contribution to Self-Care Maintenance, the Caregiver Contribution to Self-Care Monitoring and the Caregiver Contribution to Self-Care Management. Of each scale, we tested the factorial structure with confirmatory factor analysis and reliability with the factor score determinacy coefficient, the global reliability index for multidimensional scale and Cronbach's alpha. Also, we used Pearson's correlations for concurrent validity purposes. RESULTS: Confirmatory factor analysis supported the two-factor structure of the Caregiver Contribution to Self-Care Maintenance and Management scales and the one-factor structure of the Caregiver Contribution to Self-Care Monitoring scale. A simultaneous confirmatory factor analysis on the combined set of items supported the more general model (Comparative Fit Index = 0.933). Reliability estimates ranged between 0.701 and 0.961 across the three scales. Concurrent validity of Caregiver Contribution to Self-Care of Chronic Illness Inventory with the Self-Care of Chronic Illness Inventory was not sufficiently supported since weak correlations were found. CONCLUSION: The Caregiver Contribution to Self-Care of Chronic Illness Inventory is valid and reliable and can be used in clinical practice and research. IMPACT: The Caregiver Contribution to Self-Care of Chronic Illness Inventory is an useful instrument to evaluate the extent to which caregivers contribute to patient self-care in chronic illnesses.

Anxiety, depression and quality of life in chronic obstructive pulmonary disease patients and caregivers: an actor-partner interdependence model analysis.

PURPOSE: We aimed to assess the influence of anxiety and depression on the physical and mental quality of life (QoL) in patient with chronic obstructive pulmonary disease (COPD) and caregiver dyads, detect the simultaneous effect of anxiety and depression of each partner on the other's QoL and determine the dyadic patterns. METHODS: A cross-sectional descriptive design was used. The actor-partner interdependence model estimated by structural equation modeling was used for the dyadic analysis. Patient Health Questionnaire-9 (PHQ-9), Generalized Anxiety Disorder-7 (GAD-7) and 12-Item Short-Form Health Survey (SF-12) were used to measure depression, anxiety and QoL, respectively. RESULTS: Eighty COPD dyads were enrolled in the study. Patients presented higher depression symptoms and poorer physical and mental QoL than their caregivers, whereas comparable levels of anxiety were found in patients and caregivers. The model exploring the effects of depression and anxiety on mental QoL found that patients' depressive symptoms negatively influence their mental QoL, and caregivers' anxiety and depression symptoms negatively impact their mental QoL. The model exploring the effects of anxiety and depression on physical QoL detected one statistically significant actor effect with patients' depressive symptoms negatively influencing their physical QoL, and two partner effects with caregivers' anxiety worsening patients' physical QoL and caregivers' depression improving patients' physical QoL. CONCLUSIONS: The results suggest that caregivers' psychological distress influences caregivers' mental QoL and patients' physical QoL. Therefore, health-care professionals should assess and treat anxiety and depression in both members of the COPD dyad to improve their QoL.

Self-care of patient and caregiver DyAds in multiple chronic conditions: A LongITudinal studY (SODALITY) protocol.

AIM: To describe a research protocol for a study designed to examine self-care in patient and caregiver dyads in coping with multiple chronic conditions, to evaluate the influence of dyad self-care on: (a) patient mortality, quality of life, hospital admissions, and the unplanned access of care; and (b) the positive aspects of caregiving. The specific conceptual framework that we developed for this study considers the predictors of self-care (at patient, caregiver, and dyadic levels), the process of self-care and the outcomes of self-care in patient and caregiver dyads with multiple chronic conditions. These elements in patient and caregiver dyads have not been well-studied to date. DESIGN: This is a multicentre longitudinal study with data collection at 0, 6, and 12 months. METHODS: We will use generic and specific tools to assess the predictors of self-care, the process of self-care and the outcomes of self-care in the dyads. The data will be analysed with descriptive and inferential statistics and multilevel modelling to control for the interdependent nature of dyadic data. The study was approved by an ethics committee and was funded by a grant from the Centre of Excellence for Nursing Scholarship Rome, in November 2015. DISCUSSION: This study seeks to determine the predictors and outcomes of self-care in patient and caregiver dyads within the context of multiple chronic conditions. IMPACT: The results of this study will inform clinical practice and research by identifying variables that are modifiable and therefore amenable to interventions.