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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.

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