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The increase in life expectancy and an aging demographic have led to a surge in chronic diseases, presenting substantial challenges to healthcare systems worldwide. Chronic conditions are characterized by their long-term nature, recurrence and incurability, necessitating effective management strategies. This paper aims to explore the concept of self-care as a pivotal element in chronic disease management, examining its evolution, components and the role of caregivers in facilitating self-care practices. It also seeks to review the development of instruments for measuring self-care and discuss recent experimental research on selfcare interventions. Self-care is an essential strategy for managing chronic diseases, involving maintenance, monitoring and management practices influenced by various personal and environmental factors. Caregivers play a vital role in supporting self-care, especially within certain cultural contexts. The development of reliable and valid instruments to measure self-care is crucial for assessing the effectiveness of the interventions. Recent trials, such as those focusing on motivational interviewing and virtual reality, show promise in improving self-care behaviors and patient outcomes. This paper advocates for the design of tailored, evidence-based interventions and highlights the potential of artificial intelligence in advancing self-care research. Future studies should continue to explore the dyadic dynamics between patients and caregivers and include economic evaluations to inform clinical decision-making. [ABSTRACT FROM AUTHOR]

Introduction: Postoperative patients with ostomies experience significant changes in their lives as a result of the device implantation. Self-care is important to improve their health outcomes. Telehealth provides an opportunity to expand access to self-care education. Aim: This is a multicenter, non-inferiority randomized, open-label, controlled trial to evaluate the non-inferiority of a telehealth intervention to the standard in-person approach in improving self-care behaviors. Methods and analysis: Three hundred and eighty-four patients aged ≥ 18 years, with a recently placed ostomy, no stomal/peristomal complications, and documented cognitive integrity will be randomly assigned (1:1) to receive either a telehealth intervention (four remote educational sessions) or a standard educational approach (four in-person sessions) delivered in outpatient settings. Every session (remote and in-person) will occur on Days 25, 32, 40, and 60 after discharge. Follow-ups will occur 1, 3, and 6 months after the last intervention session. Primary outcome is self-care maintenance measured using the Ostomy Self-care Index (OSCI). Secondary outcomes include self-care monitoring, self-care management, self-efficacy (OSCI), quality of life (Stoma specific quality of Life), depression (Patient Health Questionnaire-9), adjustment (Ostomy Adjustment Inventory-23), stomal and peristomal complication rates, healthcare services utilization, mobility, and number of working days lost. Analyses will be performed per intention-to-treat and per protocol. Ethics and dissemination: This study has been approved by the Institutional Review Board of the main center (registration number: 119/22). Following completion of the trial, dissemination meetings will be held to share the results of the study with the participants and the health-care team. Adoption of telehealth technologies for ostomy patients can improve service organization by ensuring better integration and continuity of care. If the remote intervention produces comparable effects to the in-person intervention, it would be wise to make telehealth education an alternative treatment for addressing the educational needs of uncomplicated postoperative ostomy patients. Trial registration: ClinicalTrials.gov (identifier number: NCT05796544). [ABSTRACT FROM AUTHOR]

Despite the importance of social support in ostomy care, the Multidimensional Scale of Perceived Social Support (MSPSS) does not appear to be validated in the context of ostomy care. This study evaluated the psychometric characteristics of MSPSS in ostomy patients and their informal caregivers. The MSPSS was tested in a sample of 775 participants with confirmatory factor analysis. Internal consistency reliability was assessed with the ordinal Omega coefficient. Criterion-related validity was ascertained via hypothesis testing by correlating the scores of the MSPSS with other measures. MSPSS for patients and caregivers has a three-factor structure with a good fit. Internal consistency reliability of the factors was excellent. Concurrent validity was supported by the negative correlations between MSPSS scores with depression and stoma-related QoL, and the positive correlations with perceived mutuality. Our research indicates that the MSPSS is a sound measure of social support for ostomy patients and their caregivers. [ABSTRACT FROM AUTHOR]

Aim: The aim of this review was to identify specific instruments currently available for measuring quality of life in patients with pulmonary arterial hypertension (PAH) and to evaluate their psychometric properties in order to provide robust evidence for their application in clinical practice., Background: Pulmonary arterial hypertension is a rare pulmonary vascular disorder predominantly affecting women aged 30-50 years. It leads to elevated pulmonary artery pressure, causing increased cardiac workload. Symptoms such as dyspnea and fatigue progressively deteriorate. Given the substantial impact on patient well-being, quality of life assessment is a critical concern. Generic quality of life measures often fail to capture the unique challenges associated with PAH. Therefore, identifying a PAH-specific quality of life instrument is essential for optimising patient management., Design: A systematic literature review., Methods: A systematic review was performed to assess the psychometric properties of quality of life instruments for PAH patients, following the 2018 Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) guidelines. The literature search was conducted across Pubmed, Scopus, CINAHL, EMBASE, and APA PsycINFO databases., Results: This review included four quality of life instruments: CAMPHOR, LPHQ, emPHasis-10, and PAH-SYMPACT. CAMPHOR and PAH-SYMPACT received a GRADE A rating, while LPHQ and emPHasis-10 were rated GRADE B. Despite some sample size limitations, these instruments demonstrated varying degrees of internal reliability, validity, and content coverage for assessing quality of life in pulmonary arterial hypertension patients., Conclusions: This review provides an overview of available tools for assessing quality of life in patients with pulmonary arterial hypertension. Critical evaluation of these tools highlights incomplete psychometric assessments and methodological limitations in reference studies. Future research should prioritise more rigorous methodologies to ensure comprehensive psychometric evaluations., Competing Interests: Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Introduction: Supporting patient self-care and the contribution of their caregivers is crucial in chronic illness care. Inflammatory bowel disease (IBD) is a chronic condition whose prevalence is expected to double, especially in Western countries. IBD symptoms can negatively impact patients' well-being, causing high anxiety, depression, stress and reduced quality of life. These symptoms also affect the health of family members and friends, who often take on caregiving roles during exacerbations. Knowledge about self-care in IBD (IBD-SELF) is limited, and few studies have explored this context. This paper outlines a research protocol for a multicentre longitudinal study to investigate patient self-care and caregiver contributions to IBD-SELF., Methods and Analysis: A sample of 250 consecutive patients diagnosed with IBD and their caregivers will be recruited from 9 dedicated IBD units in northern, central and southern Italy during outpatient visits. Data collection will occur at baseline, 6 and 12 months after enrolment. Multivariable regressions, path analyses and structural equation models will identify predictors (eg, health literacy, caregiver burden and depression) and outcomes (use of healthcare services, disease severity and quality of life) of self-care and caregiver contributions. Dyadic analyses will control for the interdependence of dyad members., Ethics and Dissemination: Ethical approval was obtained from the Territorial Ethics Committee (Lazio 3) N. 0023486/23 and registered on ClinicalTrials.gov (Identifier number: NCT06015789). This study will enhance our understanding of the self-care process in the patient-caregiver dyad in IBD, aiding the design of future educational interventions and promoting greater patient and caregiver involvement in the care pathway., Trial Registration Number: ClinicalTrials.gov: NCT06015789., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Aim: Patients with heart failure experience multiple co-occurring symptoms that lower their quality of life and increase hospitalization and mortality rates. So far, no heart failure symptom cluster study recruited patients from community settings or focused on symptoms predicting most clinical outcomes. Considering physical and psychological symptoms together allows understanding how they burden patients in different combinations. Moreover, studies predicting symptom cluster membership using variables other than symptoms are lacking. We aimed to (a) cluster heart failure patients based on physical and psychological symptoms and (b) predict symptom cluster membership using sociodemographic/clinical variables., Design: Secondary analysis of MOTIVATE-HF trial, which recruited 510 heart failure patients from a hospital, an outpatient and a community setting in Italy., Methods: Cluster analysis was performed based on the two scores of the Hospital Anxiety-Depression scale and two scores of the Heart-Failure Somatic Perception Scale predicting most clinical outcomes. ANOVA and chi-square test were used to compare patients' characteristics among clusters. For the predictive analysis, we split the data into a training set and a test set and trained three classification models on the former to predict patients' symptom cluster membership based on 11 clinical/sociodemographic variables. Permutation analysis investigated which variables best predicted cluster membership., Results: Four clusters were identified based on the intensity and combination of psychological and physical symptoms: mixed distress (high psychological, low physical symptoms), high distress, low distress and moderate distress. Clinical and sociodemographic differences were found among clusters. NYHA-class (New York Heart Association) and sleep quality were the most important variables in predicting symptom cluster membership., Conclusions: These results can support the development of tailored symptom management intervention and the investigation of symptom clusters' effect on patient outcomes. The promising results of the predictive analysis suggest that such benefits may be obtained even when direct access to symptoms-related data is absent., Implications: These results may be particularly useful to clinicians, patients and researchers because they highlight the importance of addressing clusters of symptoms, instead of individual symptoms, to facilitate symptom detection and management. Knowing which variables best predict symptom cluster membership can allow to obtain such benefits even when direct access to symptoms-data is absent., Impact: Four clusters of heart failure patients characterized by different intensity and combination of psychological and physical symptoms were identified. NYHA class and sleep quality appeared important variables in predicting symptom cluster membership., Reporting Method: The authors have adhered to the EQUATOR guidelines STROBE to report observational cross-sectional studies., Patient or Public Contribution: Patients were included only for collecting their data., (© 2023 The Authors. Journal of Advanced Nursing published by John Wiley & Sons Ltd.)