Psychometric testing of the caregiver contribution to self-care of coronary heart disease inventory.

BACKGROUND: Caregivers are important contributors to the self-care of patients with coronary heart disease (CHD). AIMS: The aims of this study are to describe the development and psychometric properties of the caregiver contribution to self-care of coronary heart disease inventory (CC-SC-CHDI). METHODS: The CC-SC-CHDI was developed from the patient version of the scale, the Self-care of Coronary Heart Disease Inventory (SC-CHDI) and translated into Italian using forward and backward translation. Baseline data from the HEARTS-IN-DYADS study were used. Confirmatory factor analysis (CFA) was conducted to assess factorial validity; Cronbach's alpha and the model-based internal consistency index were used to test internal consistency reliability, and Pearson's correlation coefficient was used to test convergent validity, by investigating the association between the CC-SC-CHDI and the SC-CHDI scores. RESULTS: We included 131 caregivers (mean age 55 years, 81.2% females, 74% married) of patients affected by CHD (mean age 66 years, 80.2% males, 74% married). The CFA confirmed two factors in the caregiver contribution to self-care maintenance scale ("consulting behaviors" and "autonomous behaviors"), one factor for the CC to self-care monitoring scale, and two factors in the CC to self-care management scale ("consulting behaviors and problem-solving behaviors"). Reliability estimates were adequate for each scale (Cronbach's alpha and model-based internal consistency indexes ranging from 0.73 to 0.90). Significant and positive correlations were observed between CC-SC-CHDI and SC-CHDI scales. CONCLUSION: The CC-SC-CHDI has satisfactory validity and reliability and can be used confidently in clinical settings and research to assess caregiver contributions to CHD self-care.

Impact of telehealth on stroke survivor-caregiver dyad in at-home rehabilitation: A systematic review.

AIM: To examine studies involving the impact of telerehabilitation (TLR), tele-training and tele-support on the dyad stroke survivor and caregiver in relation to psychological, physical, social and health dimensions. DESIGN: A systematic review was conducted. DATA SOURCES: The following electronic databases were consulted until September 2023: PsycInfo, CINAHL, Eric, Ovid, PubMed, Scopus, Cochrane Central and Web of Science. REVIEW METHODS: It was conducted and reported following the checklists for Reviews of PRISMA 2020 Checklist. Critical evaluation of the quality of the studies included in the review was performed with the Joanna Briggs Institute Checklists. DATA SYNTHESIS: A total of 2290 records were identified after removing duplicates, 501 articles were selected by title and abstract and only 21 met the inclusion criteria. It included 4 quasi-experimental studies, 7 RCTs, 1 cohort study and 9 qualitative studies. The total number of participants between caregivers and stroke survivors was 1697, including 858 stroke survivors and 839 caregivers recruited from 2002 to 2022. For a total of 884 participants who carried out TLR activities in the experimental groups,11 impact domains were identified: cognitive/functional, psychological, caregiver burden, social, general health and self-efficacy, family function, quality of life, healthcare utilization, preparedness, quality of care and relationship with technology. CONCLUSIONS: The results support the application of telehealth in the discharge phase of hospitals and rehabilitation centres for stroke survivors and caregivers. TLR could be considered a substitute for traditional rehabilitation only if it is supported by a tele-learning programme for the caregiver and ongoing technical, computer and health support to satisfy the dyad's needs. IMPACT: Designing a comprehensive telemedicine programme upon the return home of the dyad involved in the stroke improves the quality of life, functional, psychological, social, family status, self-efficacy, use of health systems and the dyad's preparation for managing the stroke. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

The Role of Spirituality in Stroke Survivors and Their Caregivers: A Systematic Review.

Although several studies have analyzed the effects of spirituality on stroke survivors' physical functioning and their caregiver's outcomes, no systematic review or meta-synthesis was found to identify the lived experiences of stroke survivors and caregivers regarding spirituality. For these reasons, this study aimed to analyze quantitively and qualitatively research relating to stroke survivors' and caregivers' experiences. The included studies were RCT studies, quasi-experimental studies, qualitative, descriptive, ethnographic, and phenomenological studies, and cross-sectional studies (n = 37), with a total of 6850 stroke survivors and 1953 caregivers enrolled. Spirituality appears to play an important role in improving the quality of life and decreasing anxiety and depression of both stroke survivors and their caregivers.

Quality of life in ICU survivors and their relatives with post-intensive care syndrome: A systematic review.

BACKGROUND: Post-intensive care syndrome (PICS) is characterized by all three adverse survivorship dimensions: physical function, cognitive function and mental health status. AIM: This review aimed to describe the quality of life (QoL) of Intensive Care Unit (ICU) survivors with PICS after discharge and of their relatives with Family Post-intensive care syndrome (PICS-F) and to report anxiety, depression and Post-Traumatic Stress Disorders (PTSD) in studies investigating PICS. STUDY DESIGN: A systematic review was carried out. We searched PubMed, Scopus, Web of Science and the Cumulative Index to Nursing and Allied Health Literature. This review was registered in the PROSPERO database (CRD42022382123). RESULTS: We included 19 studies of PICS and PICS-F in this systematic review. Fourteen observational studies report the effects of PICS on depression, 12 studies on anxiety and nine on post-traumatic stress disorder and 10 on QoL. Mobility, personal care, usual activities and pain/discomfort in QoL were the domains most affected by PICS. A significant association was demonstrated between a high level of ICU survivors' anxiety and high levels of ICU relatives' burden. Strain-related symptoms and sleep disorders were problems encountered by ICU relatives with PICS-F. CONCLUSION: PICS and PICS-F were widespread experiences among ICU survivors and their ICU relatives, respectively. The results of this review showed the adverse effects of PICS and PICS-F on QoL. RELEVANCE TO CLINICAL PRACTICE: PICS and PICS-F strongly impact the rehabilitation process and are measured in terms of health costs, financial stress and potentially preventable readmission.

Association between Boarding of Frail Individuals in the Emergency Department and Mortality: A Systematic Review.

(1) Background: Older patients who attend emergency departments are frailer than younger patients and are at a high risk of adverse outcomes; (2) Methods: To conduct this systematic review, we adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) Guidelines. We systematically searched literature from PubMed, Embase, OVID Medline®, Scopus, CINAHL via EBSCOHost, and the Cochrane Library up to May 2023, while for grey literature we used Google Scholar. No time restrictions were applied, and only articles published in English were included. Two independent reviewers assessed the eligibility of the studies and extracted relevant data from the articles that met our predefined inclusion criteria. The Critical Appraisal Skills Program (CASP) was used to assess the quality of the studies; (3) Results: Evidence indicates that prolonged boarding of frail individuals in crowded emergency departments (Eds) is associated with adverse outcomes, exacerbation of pre-existing conditions, and increased mortality risk; (4) Conclusions: Our results suggest that frail individuals are at risk of longer ED stays and higher mortality rates. However, the association between the mortality of frail patients and the amount of time a patient spends in exposure to the ED environment has not been fully explored. Further studies are needed to confirm this hypothesis.

Reliability and validity of the training satisfaction questionnaire for family members (TSQ-FM) entering the ICU during an isolation disease outbreak.

BACKGROUND: The presence of family members in an isolated ICU during an isolation disease outbreak is restricted by hospital policies because of the infectious risk. This can be overcome by conferring to family members the skill and the ability to safely don and doff the personal protective equipment (PPE) through a nurse-led training intervention and assess their satisfaction, to respond to the need to define a safe, effective and quality care pathway focused on Family-Centered Care (FCC) principles. OBJECTIVE: the study aimed to build a valid and reliable instrument for clinical practice to assess family members' satisfaction to allow ICU nurses to restore family integrity in any case of infectious disease outbreak that requires isolation. METHODS: A cross-sectional study was conducted to test the psychometric properties. The questionnaire was constructed based on a literature review on the needs of family members in the ICU. 76 family members were admitted to a COVID-ICU. Cronbach's coefficient, Geomin rotated loading, and EFA were applied to assess the reliability and validity of the instrument. RESULTS: The Kaiser-Mayer-Olkin (KMO) measure was 0.662, the Bartlett sphericity test showed a significant p-value (χ²=448.33; df=45; p < 0.01), Cronbach's alpha coefficient was.896. A further CFA analysis confirmed that all fit indices were acceptable. The results showed satisfactory validity and reliability, which could be generalized and extended to any outbreak of isolation disease. CONCLUSIONS: This study provides a valid and reliable instrument for clinical practice to maintain family integrity in the dyadic relationship between the patient and the family member, even during an emergency infectious disease outbreak that requires isolation.

The role of nurse-patient mutuality on self-care behaviours in patients with chronic illness.

AIM: To examine the role of nurse-patient mutuality on three self-care behaviours in chronic illness patients. DESIGN: A cross-sectional multi-centre study was conducted. METHODS: Mutuality was measured with the Nurse-Patient Mutuality in Chronic Illness scale which has the dimensions of developing and going beyond, being a point of reference and deciding and sharing care, and self-care was measured with the Self-care of Chronic Illness Inventory (SC-CII). Multivariable linear regression analyses were used to assess the contribution of three dimensions of mutuality on self-care maintenance, monitoring and management behaviours controlling for patient gender, age, education, number of medications, and presence of a family caregiver. RESULTS: The sample included 465 inpatients and outpatients with at least one chronic illness. The three dimensions of mutuality had different roles in their influence on the three dimensions of self-care. Developing and going beyond was significantly associated with self-care maintenance and self-care monitoring behaviours. Point of reference was significantly associated with self-care maintenance behaviour. Deciding and sharing care was significantly associated with self-care monitoring and self-care management behaviours. CONCLUSION: The mutuality between nurse and patient may be a novel area of research to support and improve patient self-care behaviours with implications for clinical practice and education. IMPLICATION FOR PROFESSION AND PATIENT CARE: Mutuality between nurse and patient increases patient engagement, symptom recognition, decision-making process and patient-centred approach favouring the development of self-care behaviours. IMPACT: Mutuality between nurse and patient is a new concept and its association with the patient outcomes could bring relevance to the nursing profession. Self-care behaviours are important in the management of chronic diseases, but are difficult to perform. Mutuality between nurse and patient influences the three different behaviours of self-care in chronic illness, for this reason it is important to increase the level of mutuality in this dyad. REPORTING METHOD: STROBE checklist for cross-sectional studies was followed in this study. PATIENT OR PUBLIC CONTRIBUTION: Patients were involved in the sample of the study.

Health Literacy and Self-Care in Patients with Chronic Illness: A Systematic Review and Meta-Analysis Protocol.

Self-care plays a critical role in symptom recognition, management, and risk factor modification for patients with chronic illnesses. Despite its significance, self-care levels in this population are generally poor. Health literacy (HL) is pivotal for promoting effective self-care, yet the association across specific chronic illnesses remains fragmented and conflicting. Therefore, a systematic review and meta-analysis will be conducted. Inclusion criteria encompass quantitative studies involving adult patients with at least one chronic illness reporting on the association between a measure of HL and one or more elements of self-care behaviors as outcomes. Databases to be searched include PubMed, CINAHL, APA PsycINFO, Embase, Web of Science, and Cochrane Central Register of Controlled Trials. The studies will undergo risk of bias and certainty of evidence assessment using ROBINS-E and GRADE. Extracted data will include authors, publication date, aim(s), study location, design, sample characteristics, chronic illness type, study length, HL, and self-care measures. Understanding the link between HL and self-care can aid healthcare providers in implementing strategies to enhance health-promoting behaviors, contributing valuable insights to the scientific community and fostering nuanced discussions. This protocol ensures methodological transparency, stimulates discourse, and paves the way for informed interventions to improve overall health outcomes.

Mutuality between nurses and patients with chronic illnesses: A cross-sectional descriptive study.

BACKGROUND AND AIM: Mutuality is a process in which the patient participates and is involved in decision-making and care interventions. The aim of this study was to measure mutuality in the relationship between nurses and chronic illness patients. METHODS: This study had a cross-sectional design; the sample included 249 patients and 249 nurses. Mutuality was measured with the Nurse-Patient Mutuality in Chronic Illness scale. RESULTS: Patients had higher scores in almost all items (p < 0.001). Patients demonstrate high reciprocity towards nurses and the ability to express and share their emotions. Patients consider nurses their point of reference and share with them their health goals. Nurses show more difficulty in being mutual with the patient, especially in the aspects related to the sharing of emotions, objectives, and planning. The egalitarian relationship score was low in both patients and nurses. CONCLUSION: These findings are important to consider at clinical, educational, organisational, and policy levels. Nurse education and organisation must push towards respect for the wishes of patients, the possibility of expressing their choices, and their involvement in the care plan. PRACTICE IMPLICATIONS: In clinical practice, it is necessary to put the patients more at the centre, involving them in the identification of objectives and in making decisions.

Symptom characteristics, perceived causal attributions, and contextual factors influencing self-care behaviors: An ecological daily assessment study of adults with chronic illness.

OBJECTIVE: Insights into how symptoms influence self-care can guide patient education and improve symptom control. This study examined symptom characteristics, causal attributions, and contextual factors influencing self-care of adults with arthritis, asthma, chronic obstructive pulmonary disease, diabetes, or heart failure. METHODS: Adults (n = 81) with a symptomatic chronic illness participated in a longitudinal observational study. Using Ecological Daily Assessment, participants described one symptom twice daily for two weeks, rating its frequency, severity, bothersomeness, duration, causes, and self-care. RESULTS: The most frequent symptoms were fatigue and shortness of breath. Pain, fatigue, and joint stiffness were the most severe and bothersome. Most participants engaged in active self-care, but those with fatigue and pain engaged in passive self-care (i.e., rest or do nothing), especially when symptoms were infrequent, mild, somewhat bothersome, and fleeting. In people using passive self-care, thoughts, feelings, and the desire to conceal symptoms from others interfered with self-care. CONCLUSION: Most adults with a chronic illness take an active role in managing their symptoms but some conceal or ignore symptoms until the frequency, severity, bothersomeness, or duration increases. PRACTICE IMPLICATIONS: When patients report symptoms, asking about self-care behaviors may reveal inaction or ineffective approaches. A discussion of active self-care options may improve symptom control.

The relationship between caregiver contribution to self-care and patient quality of life in heart failure: A longitudinal mediation analysis.

BACKGROUND: Patients with heart failure may experience poor quality of life due to a variety of physical and psychological symptoms. Quality of life can improve if patients adhere to consistent self-care behaviors. Patient outcomes (i.e., quality of life) are thought to improve as a result of caregiver contribution to self-care. However, uncertainty exists on whether these outcomes improve as a direct result of caregiver contribution to self-care or whether this improvement occurs indirectly through the improvement of patient heart failure self-care behaviors. AIMS: To investigate the influence of caregiver contribution to self-care on quality of life of heart failure people and explore whether patient self-care behaviors mediate such a relationship. METHODS: This is a secondary analysis of the MOTIVATE-HF randomized controlled trial (Clinicaltrials.gov registration number: NCT02894502). Data were collected at baseline and 3 months. An autoregressive longitudinal path analysis model was conducted to test our hypotheses. RESULTS: We enrolled a sample of 510 caregivers [mean age = 54 (±15.44), 24% males)] and 510 patients [mean age = 72.4 (±12.28), 58% males)]. Patient self-care had a significant and direct effect on quality of life at three months (ß = 0.20, p < .01). Caregiver contribution to self-care showed a significant direct effect on patient self-care (ß = 0.32, p < .01), and an indirect effect on patient quality of life through the mediation of patient self-care (ß = 0.07, p < .001). CONCLUSION: Patient quality of life is influenced by self-care both directly and indirectly, through the mediation of caregiver contribution to self-care. These findings improve our understanding on how caregiver contribution to self-care improves patient outcomes.

Improving adherence to rehabilitation for heart failure patients through immersive virtual reality (VIRTUAL-HF): A protocol for a randomized controlled trial.

BACKGROUND: To improve symptoms and reduce poor outcomes related to heart failure (HF), international guidelines recommend cardiac rehabilitation (CR), particularly for those with a reduced ejection fraction. Unfortunately, patient adherence to rehabilitation programs remains suboptimal, with dropouts ranging from 15.4 to 63.3%. An innovative and promising intervention that could improve adherence to rehabilitation is virtual reality (VR). This study aims to evaluate the effects of VR in patients with HF who undergo CR using this technology in terms of adherence (primary outcome), functional capacity, perceived exertion, angina, quality of life, heart rate, oxygen saturation, blood pressure, maximum oxygen uptake, minute ventilation/carbon dioxide production slope, oxygen pulse, blood values of NT-proBNP and HF related rehospitalization rates (secondary outcomes). METHODS: A randomized controlled trial will be conducted in a sample of 80 patients referred to CR. Participants will be enrolled in a cardiological rehabilitation unit of a large university hospital in Italy and randomized (1:1) to the experimental intervention consisting of CR performed with high-quality immersive VR with PICO 4® Head Mounted Display headset and TREADMILL XR® software (Arm 1) or standard CR (Arm 2). Patients, according to guidelines, will perform 30-min of CR sessions with moderate intensity, twice a week for one month. RESULTS: Significant improvements in primary and secondary outcomes are expected in patients in the intervention group. CONCLUSIONS: If proven to be effective, VR could be an innovative, safe, and easy digital health intervention to improve adherence to CR in patients with HF, as well as important clinical outcomes.

Perceptions of nursing staff and students regarding attrition: a qualitative study.

OBJECTIVES: This research aims to explore the perceptions of nursing students and directors of bachelor of nursing degree courses regarding reasons for attrition amongst nursing students. METHODS: A qualitative descriptive study was conducted using inductive thematic analysis. The study included a purposeful sample of 12 students and 4 directors of bachelor of nursing degree courses. RESULTS: As reasons for attrition, the directors highlighted a lack of preparation for nursing studies and students' limited awareness of possibilities for support and learning. The students emphasized insufficient support from academic staff and poor course organization. Economic and family issues and a misunderstanding of the professional role of a nurse were cited as reasons by both directors and students. CONCLUSIONS: The findings provide important insight into attrition in the nursing programme. Further research is warranted, particularly in other contexts. Addressing student attrition requires a comprehensive approach that includes the provision of adequate support systems, mentorship, and resources for students.

Psychometric testing of the Care Dependency Scale in patients with heart failure and their caregivers.

AIMS: This study aims to (i) test the validity and reliability of the Care Dependency Scale (CDS) for patients with heart failure (HF) and (ii) test the validity and reliability of the proxy version of the CDS assessing informal caregivers' perception of the dependency level of individuals with HF. METHODS AND RESULTS: Secondary data analysis was conducted of transnational multicentre cross-sectional design study. A convenience sample comprised of HF patients-informal caregivers' dyads in three European countries. The CDS was administered to patients and the proxy version to informal caregivers. Factorial validity was tested for each scale using confirmatory factor analysis. Reliability was evaluated with the composite coefficient and Cronbach's alpha. Construct validity was tested via known group differences. Measurement error was tested to assess responsiveness to changes. A total of 229 patients and 208 caregivers were recruited. Confirmatory factor analysis supported the two-factor structure (Physical Care Dependency and Psychosocial Care Dependency) of the CDS in both HF patients and their caregiver. Reliability estimates were adequate for all reliability coefficients. Construct validity was supported. The measurement error was adequate. CONCLUSION: The scale shows acceptable validity and reliability and can be useful for care dependency assessment of patients with HF and their informal caregivers. Further research is needed for assessing the validity and reliability in other cross-cultural settings. The use of the CDS has the potential to effectively enable the development of pertinent care plans, taking dependency into consideration including the perspective of both members of the dyad as a whole.

Living in a multicultural context: Health and integration from the perspective of undocumented Mediterranean migrants, residents, and stakeholders in Italy. A qualitative-multimethod study.

AIM: To catch a representative view of a multicultural population's needs. DESIGN: Qualitative study. METHODS: Semi-structured interviews were conducted from July 2022 to January 2023 with the project's stakeholders, migrants, and residents. Data analysis was performed using a multimethod textual analysis technique. FINDINGS: Territorial barriers, lack of social network, and specific professionals' training emerged as healthcare delivery obstacles. For migrants, language improvement emerged as a health priority. A deep relationship with migrants emerged as a deficiency for residents. CONCLUSION: A welcoming project equipped with solid leadership and the right resources can be fundamental in mediating health promotion and integration. In this process, the involvement of the resident population is essential. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Analysing the migrants' needs and the strengths and limitations of a reception system could help identify the challenges for professionals in delivering culturally competent care. In this context, the nurse's role becomes relevant, being responsible for taking charge and caring for the population and the link between professionals and the population. WHAT PROBLEM DID THE STUDY ADDRESS?: The study addressed the problem of improving the overall health of migrants, refugees, and asylum seekers, mainly focusing on reception and integration into a new society process. WHAT WERE THE MAIN FINDINGS?: Worse health was identified with adaptation, integration, and family problems. Territorial barriers emerged, hindering good health. WHERE AND ON WHOM WILL THE RESEARCH HAVE AN IMPACT?: These research findings can be valuable for health professionals who want to improve the reception process and enhance a care model integrated with residents. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution. REPORTING METHOD: To describe the research report, we referred to the COREQ checklist (Tong et al., 2007).

Development and psychometric testing of the Self-Care of Stroke Inventory.

PURPOSE: To develop and evaluate the psychometric properties of the Self-Care of Stroke Inventory (SCSI). MATERIALS AND METHODS: A cross-sectional, instrument development and the psychometric testing study was conducted. A 23-item self-report Self-Care of Stroke Inventory with 3 separate scales was developed. This study involved three stages: (a) Initial items generation; (b) Content and face validation; (c) Psychometric properties evaluation. The SCSI was validated by content validity, construct validity, convergent validity, internal consistency, and test-retest reliability. RESULTS: From the initial 80-item pool, 24 items of 3 scales in the SCSI were retained by the expert consultation and item analysis. The scale's content validity was 0.976, 0.966, and 0.973. The EFA showed the total variance explained by the 3 scales of the SCSI were 73.417%, 74.281%, and 80.207%, respectively. The models of the 3 scales identified by EFA were all confirmed by the CFA. The SCSI scale shows evidence of good convergent validity. Cronbach's αs were 0.830, 0.930, and 0.831. Test-retest reliability of the SCSI was excellent, with an intraclass correlation coefficient of 0.945, 0.907, and 0.837. CONCLUSIONS: The final 23-item SCSI presents good psychometric properties and can be used to explore the self-care of stroke in community settings.IMPLICATIONS FOR REHABILITATIONThis study developed and validated the Self-Care of Stroke Inventory (SCSI).The SCSI contains the following 3 scales: the Self-care Maintenance of Stroke scale, the Self-care Monitoring of Stroke scale, and the Self-care Management of Stroke scaleThe 23-item SCSI demonstrated strong psychometric properties.The SCSI may be used to develop future programmes to promote self-care for stroke survivors and improve their rehabilitation outcomes.

The Effectiveness of a Motivational Interviewing Intervention on Mutuality Between Patients With Heart Failure and Their Caregivers: A Secondary Outcome Analysis of the MOTIVATE-HF Randomized Controlled Trial.

BACKGROUND: Mutuality, defined as "the positive quality of the relationship between a caregiver and a care receiver", was found to be associated with self-care and caregiver contribution to self-care in heart failure (HF). However, no studies were conducted to evaluate whether motivational interviewing (MI) can improve mutuality in patients with HF and caregivers. OBJECTIVES: The aim of this study was to evaluate the effectiveness of MI on mutuality in HF patient-caregiver dyads. METHODS: This is a secondary outcome analysis of the MOTIVATE-HF randomized controlled trial, the primary aim of which was to evaluate the effect of MI on improving self-care in patients with HF. Participants were randomized into 3 arms: (1) MI for patients only, (2) MI for both patients and caregivers, and (3) standard care. To assess the HF patients' and caregivers' mutuality, the Mutuality Scale was used in its patient and caregiver versions. RESULTS: Patients with HF had a median age of 74 years, and there were more men (58%). Most patients were retired (76.2%). Caregivers had a median age of 55 years and were mostly women (75.5%). Most patients were in New York Heart Association class II (61.9%) and had an ischemic HF etiology (33.6%). The motivational interviews did not show any impact on changes in the patient and caregiver mutuality during the follow-up time (3, 6, 9, and 12 months from baseline). The condition of living together between the patient and the caregiver was significantly associated with better mutuality between the patient and the caregiver. CONCLUSIONS: Motivational interviewing performed by nurses was not effective in improving mutuality in patients with HF and caregivers, but the target variable of the intervention was patient self-care. Stronger effects of MI on mutuality were observed in patients with HF and caregivers who live together. Future studies should target mutuality to see whether MI is really effective.

Stroke disease-specific quality of life trajectories and their associations with caregivers' anxiety, depression, and burden in stroke population: a longitudinal, multicentre study.

AIMS: The aims of this study were to: (i) test if there are clusters of stroke survivors who experience distinct trajectories of quality of life (QOL) from hospital rehabilitation discharge to 12-month follow-up; (ii) test if any sociodemographic or clinical variables predict this class membership; and (iii) examine the associations between the clusters of stroke survivors' and their caregivers' trajectories of anxiety, depression, and burden over time. METHODS AND RESULTS: A total of 415 stroke survivors and their caregivers were recruited in Italy for this 1-year, longitudinal, multicentre prospective study, filling out a survey at five time points. We found two distinct trajectories of change in stroke survivors' psychological QOL (i.e. Memory, Communication, Emotion, and Participation). The first trajectory (86% of the survivors) included those who started with greater levels of QOL and improved slightly to markedly in all psychological domains, while the second trajectory (14% of the survivors) comprised those who started with lower overall levels of psychological QOL and experienced a worsening or no changes at all in these dimensions up to 12-month follow-up. Very few clinical and sociodemographic variables at baseline predicted class membership. Finally, caregivers of those patients who experienced no change or a worsening in psychological QOL reported greater distress and burden over time. CONCLUSION: Our results highlight the need for more tailored interventions to improve patients' psychological QOL and consequently their caregivers' well-being. This requires a shift from a stroke survivor-centred approach to a stroke survivor- and caregiver-centred one.

Cluster analysis of heart failure patients based on their psychological and physical symptoms and predictive analysis of cluster membership.

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.