BackgroundPatient empowerment is a key element to improve the results in health, increase satisfaction amongst users and obtain higher treatment compliance. The main objective of this study is to validate the Spanish version of the questionnaire “Patient empowerment in long-term conditions” which evaluates the patients’ level of empowerment of chronic diseases. The secondary objective is to identify factors which predict basal empowerment and changes (improvement or deterioration) in patients with Heart Failure (HF).MethodsAn observational and prospective design of psychometric type to validate a questionnaire (aim 1) and a prospective study of cohorts (aim 2). The study will include 121 patients with confirmed diagnosis of HF. Three measurements (basal, at 15 days and at 3 months) will be carried out: quality of life, self-care and empowerment. Descriptive and inferential analyses will be used. For the first aim of the study (validation), the test-retest reproducibility will be assessed through intraclass correlation coefficient; internal consistency will be assessed through Cronbach’s alpha coefficient; construct validity through Pearson’s correlation coefficient; and sensibility to change through effect size coefficient.DiscussionSet a valid questionnaire to measure the level of empowerment of patients with chronic diseases could be an effective tool to assess the results from the provision of the health care services. It will also allow us to identify at an early stage, those groups of patients with a low level of empowerment. Hence, they could become a risk group due to poor management of the disease, with a high rate of decompensation and a higher use rate of the health system resources.

Aims The assumption that improved self-care in the setting of heart failure (HF) care necessarily translates into improvements in long-term mortality and/or hospitalization is not well established. We aimed to study the association between self-care and long-term mortality and other major adverse HF events (MAHFE). Methods and results We conducted an observational, prospective, cohort study of 1123 consecutive patients with chronic HF. The primary endpoint was all-cause mortality. We used the European Heart Failure Self-care Behaviour Scale 9-item version (EHFSCBS-9) to measure global self-care (overall score) and three specific dimensions of self-care including autonomy-based adherence, consulting behaviour and provider-based adherence. After a mean follow-up of 3.3 years, all-cause death occurred in 487 patients (43%). In adjusted analysis, higher EHFScBS-9 scores (better self-care) at baseline were associated with lower risk of all-cause death [hazard ratio (HR) 0.993, 95% confidence interval (CI) (0.988–0.997), P-value = 0.002], cardiovascular (CV) death [HR 0.989, 95% CI (0.981–0.996), P-value = 0.003], HF hospitalization [HR 0.993, 95% CI (0.988–0.998), P-value = 0.005], and the combination of MAHFE [HR 0.995, 95% CI (0.991–0.999), P-value = 0.018]. Similarly, impaired global self-care [HR 1.589, 95% CI (1.201–2.127), P-value = 0.001], impaired autonomy-based adherence [HR 1.464, 95% CI (1.114–1.923), P-value = 0.006], and impaired consulting behaviour dimensions [HR 1.510, 95% CI (1.140–1.923), P-value = 0.006] were all associated with higher risk of all-cause mortality. Conclusion In this study, we have shown that worse self-care is an independent predictor of long-term mortality (both, all-cause and CV), HF hospitalization, and the combinations of these endpoints in patients with chronic HF. Important dimensions of self-care such as autonomy-based adherence and consulting behaviour also determine the risk of all these outcomes in the long term.

The Spanish version of the Patient Empowerment in long-term conditions questionnaire is semantically and conceptually equivalent to the original tool. The assessment of the psychometric properties of the Spanish version of the questionnaire will be carried out at a later stage.

BackgroundPatient empowerment is a key factor in improving health outcomes. ObjectiveTo evaluate the psychometric properties of the Spanish version of the questionnaire on Patient Empowerment in Long-Term Conditions (PELC) that evaluates the degree of empowerment of patients with chronic diseases. MethodsThree measurements were made (at baseline, 2 weeks and 12 weeks) of quality of life (QoL), self-care, self-efficacy and empowerment. Reliability was evaluated as internal consistency for the entire sample. Test-retest reproducibility was evaluated for patients who were stable from baseline to week 2 (n = 70). Validity was analysed (n = 124) as baseline correlations with QoL, self-care, self-efficacy, clinical data and psychosocial variables. Sensitivity to change was analysed in terms of effect size for patients who had improved between baseline and week 12 (n = 48).

BackgroundSelf-care is an integral component of successful chronic heart failure (HF) management. Structured educational programs have already been shown to be effective in improving self-care, but some patients show resistance and little motivation for change.ObjectiveThe objective of this study was to compare efficacy in improving self-care and health-related quality of life (HRQoL) for an educational intervention based on motivational interviewing (MI) compared with a conventional educational intervention.MethodsThis experimental pretest-posttest study with an equivalent historical control group included 93 patients in the intervention group and 93 matched patients in the control group. Participants attended a first visit after HF hospitalization discharge and 6 to 7 follow-up visits during 6 months. The European Heart Failure Self-care Behavior scale and the Minnesota Living with Heart Failure Questionnaire were used to assess self-care and HRQoL, respectively. Data on mortality and hospital readmissions were collected as adverse events.ResultsSelf-care improved significantly more in the MI-based intervention group than in the control group (P = .005). Although both self-care and HRQoL improved in both groups over time (P < .05), there was no significant between-group difference in terms of HRQoL improvement over time (P = .13).ConclusionsOur findings suggest that MI delivered by MI-trained nurses is effective in significantly improving self-care by patients with HF. Nonetheless, further studies are required to evaluate the impact of MI on other outcomes, such as HRQoL and adverse clinical events.

ObjectivesTo gather insights on the disease experience of patients with heart failure (HF) with reduced ejection fraction (HFrEF), and assess how patients’ experiences and narratives related to the disease complement data collected through standardised patient-reported outcome measures (PROMs). Also, to explore new ways of evaluating the burden experienced by patients and caregivers.DesignObservational, descriptive, multicentre, cross-sectional, mixed-methods study.SettingSecondary care, patient’s homes.ParticipantsTwenty patients with HFrEF (New York Heart Association (NYHA) classification I–III) aged 38–85 years.MeasuresPROMs EuroQoL 5D-5L (EQ-5D-5L) and Kansas City Cardiomyopathy Questionnaire and patient interview and observation.ResultsA total of 20 patients with HFrEF participated in the study. The patients’ mean (SD) age was 72.5 (11.4) years, 65% were male and were classified inNYHA functional classes I (n=4), II (n=7) and III (n=9). The study showed a strong impact of HF in the patients’ quality of life (QoL) and disease experience, as revealed by the standardised PROMs (EQ-5D-5L global index=0.64 (0.36); Kansas City Cardiomyopathy Questionnaire total symptom score=71.56 (20.55)) and the in-depth interviews. Patients and caregivers often disagreed describing and evaluating perceived QoL, as patients downplayed their limitations and caregivers overemphasised the poor QoL of the patients. Patients related current QoL to distant life experiences or to critical moments in their disease, such as hospitalisations. Anxiety over the disease progression is apparent in both patients and caregivers, suggesting that caregiver-specific tools should be developed.ConclusionsPROMs are an effective way of assessing symptoms over the most recent time period. However, especially in chronic diseases such as HFrEF, PROM scores could be complemented with additional tools to gain a better understanding of the patient’s status. New PROMs designed to evaluate and compare specific points in the life of the patient could be clinically more useful to assess changes in health status.

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ObjectivesTo explore the presence of specialist outpatient nursing activity in care for kidney transplant recipients in Spain and to determine the level of competence development of this activity according to the Advanced Practice Nurse model.DesignDescriptive, cross‐sectional study.Participants and MeasurementsAll outpatient nurses specialising in renal transplantation in the 39 transplant hospitals in Spain were included. To fulfil the study objectives, an ad hoc questionnaire and the ‘Advanced Practice Nurse Role Definition Instrument (IDREPA)’ were administered to assess the nurses' level of competence development.ResultsOf the facilities included in the study, 25 (64.1%) had posttransplant nursing activity, 13 (33.3%) had pretransplant nursing activity and 11 (28.2%) had nursing activity involving kidney donor candidates. Twenty‐seven specialist nurse's offices were identified. The results of the IDREPA reflect the presence of advanced practice in the domains of ‘expert care planning’ and ‘comprehensive care’. Three (11.1%) nurses met all criteria for advanced nursing practice.ConclusionThe results on specialised outpatient nursing activity at the 39 transplantation facilities in Spain indicate a low presence of this type of activity, with an even lower presence of advanced practice nurses.Implications for Clinical PracticeManagement teams should consider investing in the quality of care provided by advanced nurse practice to ensure that suitable treatment is provided and better clinical outcomes are obtained.