Health care systems are confronted with an increasing burden of (multi-)morbidity and a shortfall of healthcare providers. Coordination and continuity of care in chronic and multi-morbid patient is especially important. As qualitative patient experience data within care processes is scarce, we aim to increase the understanding of chronically ill patient's perspectives by assessing patient experiences in different health systems while treated in primary care. Patients were recruited via GPs from Germany, Sweden, Switzerland, and the British island of Jersey. To ascertain regular healthcare utilisation, inclusion criteria were either a stroke, and/or a myocardial infarction or heart failure during the past year, and an underlying metabolic syndrome. Identical semi-structured interview-guides were used in the respective language. Transcribed interviews were analysed according to inductive-deductive qualitative content analysis. Based on 22 interviews we derived four main categories (patient centeredness, continuity, coordination, access). Overall, healthcare processes were considered positive if information flow was personal and functional. Non-physician staff seemed to create reassurance. A long-lasting doctor-patient relationship was connected to the context of trust and security. Patients were critical of a perceived lack of time, inducing insufficient counselling and information-flow. This international explorative study suggests that patients' experiences can provide important information about care provision. Patients consistently focused more on relational aspects rather than on structures or functions. This has connotations for healthcare planning; for example, by providing non-physician staff to support patients through their care pathway and to improve the cooperation between providers.

Aims The aims of this study were (i) to evaluate the effects of using an m-health tool on self-care behaviour at 3 and 12 months and (ii) to explore the experiences and perceptions of heart failure (HF) patients about the m-health tool.Methods and results In this pre-post interventional study with a mixed-method analysis, 71 patients diagnosed with HF [49% female, mean age 76.7 years, New York Heart Association (NYHA) II 31%, NYHA III 69%] were enrolled and had the m-health tool installed in their home for 1 year. The tool consisted of a pre-programmed tablet including a weighing scale and interactive education about HF self-care. At baseline, and at 3 and 12 months, self-care was assessed using the European Heart Failure Self-care Behaviour (EHFScB-9) Scale, an eight-item self-administered questionnaire assessing the experiences of the m-health tool. The mean EHFScB-9 at baseline was 63.8 +/- 2.8 and it improved to 67.6 +/- 7.6 after 3 months (P < 0.05). After 1 year, the score had decreased to 63.2 +/- 7.1 (P = 0.68). Most patients rated the tool as 'good', both at 3 months (92%) and after 12 months (93%). Some found the system to be unnecessary to some degree, and this number increased between 3 and 12 months (P < 0.001). Most patients felt that m-health increased their feelings of security, and 85% responded that the system increased their family members' sense of security.Conclusion The m-health tool significantly improved patients' self-care behaviour after 3 months, but this effect did not persist after 1 year. For achieving long-term effects and outcomes, additional and regularly updated self-care support may be needed.

AIM: The aim of this study is to examine whether a conceptual model including the associations between continuity of care, perceived control and self-care could explain variations in health-related quality of life and hospital readmissions in people with chronic cardiac conditions after hospital discharge.

DESIGN: Correlational design based on cross-sectional data from a multicentre survey study.

METHODS: People hospitalized due to angina, atrial fibrillation, heart failure or myocardial infarction were included at four hospitals using consecutive sampling procedures during 2017-2019. Eligible people received questionnaires by regular mail 4-6 weeks after discharge. A tentative conceptual model describing the relationship between continuity of care, self-care, perceived control, health-related quality of life and readmission was developed and evaluated using structural equation modelling.

RESULTS: In total, 542 people (mean age 75 years, 37% females) were included in the analyses. According to the structural equation model, continuity of care predicted self-care, which in turn predicted health-related quality of life and hospital readmission. The association between continuity of care and self-care was partly mediated by perceived control. The model had an excellent model fit: RMSEA = 0.06, 90% CI, 0.05-0.06; CFI = 0.90; TLI = 0.90.

CONCLUSION: Interventions aiming to improve health-related quality of life and reduce hospital readmission rates should focus on enhancing continuity of care, perceived control and self-care.

IMPACT: This study reduces the knowledge gap on how central factors after hospitalization, such as continuity of care, self-care and perceived control, are associated with improved health-related quality of life and hospital readmission in people with cardiac conditions. The results suggest that these factors together predicted the quality of life and readmissions in this sample. This knowledge is relevant to researchers when designing interventions or predicting health-related quality of life and hospital readmission. For clinicians, it emphasizes that enhancing continuity of care, perceived control and self-care positively impacts clinical outcomes.

PATIENT OR PUBLIC CONTRIBUTION: People and healthcare personnel evaluated content validity and were included in selecting items for the short version.

INTRODUCTION: Hospitalization due to cardiac conditions is increasing worldwide, and follow-up after hospitalization usually occurs in a different healthcare setting than the one providing treatment during hospitalization. This leads to a risk of fragmented care and increases the need for coordination and continuity of care after hospitalization. Furthermore, international reports highlight the importance of improving continuity of care and state that it is an essential indicator of the quality of care. Patients' perceptions of continuity of care can be evaluated using the Patient Continuity of Care Questionnaire (PCCQ). However, the original version is extensive and may prove burdensome to complete; therefore, we aimed to develop and evaluate a short version of the PCCQ.

METHODS: This was a psychometric validation study. Content validity was evaluated among user groups, including patients (n = 7), healthcare personnel (n = 15), and researchers (n = 7). Based on the results of the content validity and conceptual discussions among the authors, 12 items were included in the short version. Data from patients were collected using a consecutive sampling procedure involving patients 6 weeks after hospitalization due to cardiac conditions. Rasch analysis was used to evaluate the psychometric properties of the short version of the PCCQ.

RESULTS: A total of 1000 patients were included [mean age 72 (SD = 10), 66% males]. The PCCQ-12 presented a satisfactory overall model fit and a person separation index of 0.79 (Cronbach's α: .91, ordinal α: .94). However, three items presented individual item misfits. No evidence of multidimensionality was found, meaning that a total score can be calculated. A total of four items presented evidence of response dependence but, according to the analysis, this did not seem to affect the measurement properties or reliability of the PCCQ-12. We found that the first two response options were disordered in all items. However, the reliability remained the same when these response options were amended. In future research, the benefits of the four response options could be evaluated.

CONCLUSION: The PCCQ-12 has sound psychometric properties and is ready to be used in clinical and research settings to measure patients' perceptions of continuity of care after hospitalization.

PATIENT OR PUBLIC CONTRIBUTION: Patients, healthcare personnel and researchers were involved in the study because they were invited to select items relevant to the short version of the questionnaire.

Aims Patients with heart failure (HF) and their family caregivers commonly experience depressive symptoms associated with low quality of life (QOL) at the individual level. However, there is a lack of knowledge about how QOL and family function are associated with depressive symptoms at the dyad level. The aim of this article is to compare QOL and family function among dyads stratified by depressive symptoms. Methods and results Outpatients with HF and their primary caregivers completed the Beck Depression Inventory-II for depressive symptoms, the Short Form 36 for physical and mental QOL, and the McMaster Family Assessment Device for a family function. Analysis of variance was used to compare QOL and family function among the four dyad groups. A total of 91 dyads were categorized into four groups: neither member having depressive symptoms (43.9%), only the caregiver having depressive symptoms (13.2%), only the patient having depressive symptoms (23.1%), and both members having depressive symptoms (20.9%). Dyads without depressive symptoms had the highest levels of physical and mental QOL among the groups. The dyads with both members having depressive symptoms had the lowest levels of physical and mental QOL (P < 0.001) and the lowest levels of general family functioning, problem-solving ability, and communication ability (P < 0.001). Intermediate levels of QOL were seen in dyads with only one member having depressive symptoms, and a similar pattern of intermediate scores was found in all three subscales of family function. Conclusion Dyads with both members having depressive symptoms may be at greatest risk of having poor QOL and low family functioning.

Background 

High levels of perceived control and lower levels of depressive symptoms are associated with better well-being in both patients with heart failure and their spouses at an individual level. However, there is a knowledge gap about how these individual factors have reciprocal influences on partners' well-being within the patient-spouse dyads.

Objective 

The aims of this study were to examine dyads of patients with heart failure and their spouses on whether the patients' perceived control over the management of heart failure and depressive symptoms predicts their own and their spouses' physical and emotional well-being and to examine whether patients' perceived control predicts their own and their spouses' depressive symptoms.

Methods 

A total 155 patient-spouse dyads (patients: 75% male, mean age of 71 years, 53% classified as New York Heart Association III; spouses: 75% female, mean age of 69 years) were recruited from 2 hospital-based outpatient heart failure clinics. Participants completed the Control Attitude Scale, the Beck Depression Inventory, and the Short-Form 36. Dyadic data were analyzed using multilevel regression of the actor-partner interdependence model.

Results 

Perceived control had an actor effect on emotional well-being only for patients, and there were partner effects of perceived control on emotional well-being for both patients and their spouses. Depressive symptoms exhibited an actor effect on physical and emotional well-being for patients and spouses, but there were no partner effects of depressive symptoms on emotional well-being. Perceived control had partner effects on depressive symptoms for patients and spouses, but an actor effect of depressive symptoms was only found for patients.

Conclusion 

In an interdependent relationship within the patient-spouse dyads, each dyad member's perceived control influenced their partner's emotional well-being as well as depressive symptoms. The findings suggest development of dyadic interventions that can increase perceived control over the heart condition.

The objective of this review was to identify and synthesize evidence on risk factors associated with hospital readmission within the first year after heart failure hospitalization among patients with heart failure with reduced left ventricular ejection fraction.

Background: Symptom perception in heart failure has been identified as crucial for effective self-care that is a modifiable factor related to decreased hospital readmission and improved survival. Aims: To review systematically the heart failure symptom perception literature and synthesise knowledge on definition, description, factors and instruments. Methods: We conducted a scoping review including studies reporting patient-reported symptom perception in adults with heart failure. Structured searches were conducted in Medline, PubMed, Embase, CINAHL, PsychINFO, Web of Science, Cochrane, JBI and grey literature. Two authors independently reviewed references for eligibility. Data were charted in tables and results narratively summarised. Results: The search yielded 3057 references, of which 106 were included. The definition of heart failure symptom perception comprised body listening, monitoring signs, recognising, interpreting and labelling symptoms, and furthermore awareness of and assigning meaning to the change. Symptom monitoring, recognition and interpretation were identified as challenging. Symptom perception facilitators include prior heart failure hospitalisation, heart failure self-care maintenance, symptom perception confidence, illness uncertainty and social support. Barriers include knowledge deficits, symptom clusters and lack of tools/materials. Factors with inconsistent impact on symptom perception include age, sex, education, experiences of living with heart failure, comorbidities, cognitive impairment, depression and symptom progression. One instrument measuring all dimensions of heart failure symptom perception was identified. Conclusion: Heart failure symptom perception definition and description have been elucidated. Several factors facilitating or hampering symptom perception are known. Further research is needed to determine a risk profile for poor symptom perception - which can then be taken into consideration when supporting heart failure self-care.

Background

Partners of patients with heart failure provide both practical and emotional support. Many partners assume caregiving responsibilities without being aware of the burden related with this role.

Objective

Our work has established that a psycho-educational intervention has benefits at 3, but not at 12 months for patients with heart failure. Further we had not described the long-term effects in caregivers. This study aimed to determine the 24-months effects of a dyadic psycho-educational intervention on caregiver burden and morbidity in partners of patients with heart failure and study factors associated with a change in caregiver burden.

Design

A randomized controlled study design, with a follow-up assessment after 24 months.

Setting and participants

Partners to patients with heart failure were recruited from two hospitals in the southeast of Sweden.

Intervention

A three session nurse-led psycho-educational program was tested and included psychosocial support to maintain the partners’ physical and mental functions, and perceived control. Several instrument were used to measure caregiver burden, perceived control, physical and mental health, depression and morbidity.

Results

One hundred fifty-five partners were included. There were no significant differences in any index of caregiver burden or morbidity among the partners in the intervention and control groups after 24 months. Overall, the mean total caregiver burden was found to be significantly increased compared to baseline (36 ± 12 vs 38 ± 14, p < 0.05). A younger partner, less comorbidity, higher levels of perceived control, better physical health and less symptoms of depression in patients, and better mental health in the partners were factors associated with absence of increased caregiver burden over time.

Discussion and conclusion

Our intervention did not significantly decrease caregiver burden or morbidity. Over time, several aspects of burden increased in both groups. To improve outcomes, individualized and targeted interventions might be beneficial.