Objective The aim was to explore the experiences of a person-centred e-health intervention, in patients diagnosed with chronic obstructive pulmonary disease (COPD) or chronic heart failure (CHF). Design Grounded theory was applied to gather and analyse data. Setting The study is part of a research project evaluating the effects of person-centred care (PCC) using a digital platform and structured telephone support for people with COPD or CHF recruited from nine primary care units in Sweden. Participants Twelve patients from the intervention group were purposefully selected in accordance with the initial sampling criteria. Intervention The intervention was delivered through a digital platform and telephone support system for 6 months. The intervention relied on person-centred ethics operationalised through three core PCC components: patient narratives, partnership and shared documentation. Results A core category was formulated: Being welcomed through the side door when lacking the front door keys. The core category reflects how a PCC intervention delivered remotely provides access to mutual and informal meetings at times when professional contacts were desired to support patient self-management goals. According to patients’ wishes, family and friends were seldom invited as care partners in the e-health context. Conclusions A PCC intervention delivered remotely as a complement to standard care in a primary care setting for patients diagnosed with COPD or CHF is a viable approach to increase patients’ access and involvement in preventive care. The e-health intervention seemed to facilitate PCC, strengthen patients’ position in the health service system and support their self-management.

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ImportanceInternational efforts are being made towards a person-centred care (PCC) model, but there are currently no standardised mechanisms to measure and monitor PCC at a healthcare system level. The use of metrics to measure PCC can help to drive the changes needed to improve the quality of healthcare that is person centred.ObjectiveTo develop and validate person-centred care quality indicators (PC-QIs) measuring PCC at a healthcare system level through a synthesis of the evidence and a person-centred consensus approach to ensure the PC-QIs reflect what matters most to people in their care.MethodsExisting indicators were first identified through a scoping review of the literature and an international environmental scan. Focus group discussions with diverse patients and caregivers and interviews with clinicians and experts in quality improvement allowed us to identify gaps in current measurement of PCC and inform the development of new PC-QIs. A set of identified and newly developed PC-QIs were subsequently refined by Delphi consensus process using a modified RAND/UCLA Appropriateness Method. The international consensus panel consisted of patients, family members, community representatives, clinicians, researchers and healthcare quality experts.ResultsFrom an initial 39 unique evidence-based PC-QIs identified and developed, the consensus process yielded 26 final PC-QIs. These included 7 related to structure, 16 related to process, 2 related to outcome and 1 overall global PC-QI.ConclusionsThe final 26 evidence-based and person-informed PC-QIs can be used to measure and evaluate quality incorporating patient perspectives, empowering jurisdictions to monitor healthcare system performance and evaluate policy and practice related to PCC.

Background Chronic obstructive pulmonary disease (COPD) and chronic heart failure (CHF) are characterized by severe symptom burden and common acute worsening episodes that often require hospitalization and affect prognosis. Although many studies have shown that person-centered care (PCC) increases self-efficacy in patients with chronic conditions, studies on patients with COPD and CHF treated in primary care and the effects of PCC on the risk of hospitalization in these patients are scarce. Objective The aim of this study is to evaluate the effects of PCC through a combined digital platform and telephone support for people with COPD and CHF. Methods A multicenter randomized trial was conducted from 2018 to 2020. A total of 222 patients were recruited from 9 primary care centers. Patients diagnosed with COPD, CHF, or both and with internet access were eligible. Participants were randomized into either usual care (112/222, 50.5%) or PCC combined with usual care (110/222, 49.5%). The intervention’s main component was a personal health plan cocreated by the participants and assigned health care professionals. The health care professionals called the participants in the intervention group and encouraged narration to establish a partnership using PCC communication skills. A digital platform was used as a communication tool. The primary end point, divided into 2 categories (improved and deteriorated or unchanged), was a composite score of change in general self-efficacy and hospitalization or death 6 months after randomization. Data from the intention-to-treat group at 3- and 6-month follow-ups were analyzed. In addition, a per-protocol analysis was conducted on the participants who used the intervention. Results No significant differences were found in composite scores between the groups at the 3- and 6-month follow-ups. However, the per-protocol analysis of the 3-month follow-up revealed a significant difference in composite scores between the study groups (P=.047), although it was not maintained until the end of the 6-month follow-up (P=.24). This effect was driven by a change in general self-efficacy from baseline. Conclusions PCC using a combined digital platform and structured telephone support seems to be an option to increase the short-term self-efficacy of people with COPD and CHF. This study adds to the knowledge of conceptual innovations in primary care to support patients with COPD and CHF. Trial Registration ClinicalTrials.gov NCT03183817; http://clinicaltrials.gov/ct2/show/NCT03183817

Introduction: Fatigue is a prevalent symptom that is associated with various conditions. In patients with chronic heart failure (CHF), fatigue is one of the most commonly reported and distressing symptoms and it is associated with disease progression. Person-centred care (PCC) is a fruitful approach to increase the patient’s ability to handle their illness. Aim: The aim of this study was to evaluate the effects of PCC in the form of structured telephone support on self-reported fatigue in patients with CHF. Method: This study reports a subgroup analysis of a secondary outcome measure from the Care4Ourselves randomised intervention. Patients ( n=77) that were at least 50 years old who had been hospitalized due to worsening CHF received either usual care ( n=38) or usual care and PCC in the form of structured telephone support ( n=39). Participants in the intervention group created a health plan in partnership with a registered nurse. The plan was followed up and evaluated by telephone. Self-reported fatigue was assessed using the Multidimensional Fatigue Inventory 20 (MFI-20) at baseline and at 6 months. Linear regression was used to analyse the change in MFI-20 score between the groups. Results: The intervention group improved significantly from baseline to the 6-month follow-up compared with the control group regarding the ‘reduced motivation’ dimension of the MFI-20 (Δ -1.41 versus 0.38, p=0.046). Conclusion: PCC in the form of structured telephone support shows promise in supporting patients with CHF in their rehabilitation, improve health-related quality of life and reduce adverse events. Trial registration ISRCTN.com ISRCTN55562827

Background:The connection between stress and disease has been part of folk wisdom for a long time and has even made its way into our language with phrases such as ‘scared to death’ and ‘a broken heart’. Takotsubo syndrome is a form of acute, reversible heart failure characterized by ballooning of the left ventricle. Post-menopausal women are primarily affected, but cases have been described in both sexes and at all ages. The complete pathophysiology is unknown, but the disease has been connected to psychological or physical stress and a surge in catecholamines. Despite the strong connection with stress, knowledge about the life of patients before the onset of Takotsubo syndrome is lacking.Aim:The aim of this study was to describe and interpret patients’ narratives about long-term stress experienced before the onset of Takotsubo syndrome.Method:Nineteen people diagnosed with Takotsubo syndrome were interviewed. The narrative interviews were recorded and transcribed verbatim. The resulting texts were analysed using phenomenological hermeneutics.Results:The analysis revealed that the interviewees lived under stressful circumstances, characterized by feeling burdened by responsibilities, injustice and uncertainty, long before the onset of Takotsubo syndrome. This long-term stress wore down the defences of the interviewees to the degree that their capacity was exhausted and the smallest stressor could ‘tip them over the edge’. The findings indicated that the social structure of gender possibly contributed to the interviewees’ condition.Conclusions:These findings indicated that long-term stressful circumstances may cause vulnerability to acute psychological or physical stressors and, subsequently, to the onset of Takotsubo syndrome.

ObjectiveThe aim of the study was to investigate the meaning of narrated symptoms in connection to takotsubo syndrome.Design, method, participants and settingQualitative study consisting of 25 interviews, 23 women and 2 men aged 39–84 and living in Region Västra Götaland, Sweden. The transcribed text was analysed with phenomenological hermeneutics.ResultsThe interviewees reported a large number of symptoms before, during and after the acute onset of takotsubo syndrome, including pain, affected breathing, lassitude, malaise and nausea. Several of these have not been reported previously. Symptoms before the acute onset were, even if they had been prominent, ignored by the interviewees for various reasons. During the acute phase, the symptoms could no longer be ignored and the interviewees sought healthcare. The remaining residual symptom after discharge from hospital caused a great deal of worry because the interviewees feared that they would be permanent and they felt they could not live this way. On the whole, becoming ill and having a large number of symptoms greatly impacted the lives of the interviewees and made them re-evaluate how they had been living. Furthermore, they reported feeling alone and lost regarding their symptom burden, especially in relation to their residual symptoms, which affected their health and ability to return to daily life.ConclusionsAcute symptoms, and symptoms before and after the acute ones, are a major part of the illness experience for patients with takotsubo syndrome and affect their health and well-being. Assessment of symptoms should be an integrated part of care to promote health. One way of achieving this is through the patients’ own narratives of their experiences, which are an important component in person-centred care.

Background Increasing healthcare costs need to be contained in order to maintain equality of access to care for all EU citizens. A cross‐disciplinary consortium of experts was supported by the EU FP7 research programme, to produce a roadmap on cost containment, while maintaining or improving the quality of healthcare. The roadmap comprises two drivers: person‐centred care and health promotion; five critical enablers also need to be addressed: information technology, quality measures, infrastructure, incentive systems, and contracting strategies. Method In order to develop and test the roadmap, a COST Action project was initiated: COST−CARES, with 28 participating countries. This paper provides an overview of evidence about the effects of each of the identified enablers. Intersections between the drivers and the enablers are identified as critical for the success of future cost containment, in tandem with maintained or improved quality in healthcare. This will require further exploration through testing. Conclusion Cost containment of future healthcare, with maintained or improved quality, needs to be addressed through a concerted approach of testing key factors. We propose a framework for test lab design based on these drivers and enablers in different European countries.