IntroductionHealthcare providers usually manage medication for patients during hospitalisation, although patients are expected to self-manage their medication after discharge. A lack of ...self-management competencies is found to be associated with low adherence levels and medication errors harming patients’ health. Currently, patients seldom receive support or education in medication self-management. When self-management is allowed during hospitalisation, it is rarely provided using a structured, evidence-based format. Therefore, an in-hospital medication self-management intervention (ie, SelfMED) was developed based on current evidence. To date, empirical data demonstrating the effect of SelfMED on medication adherence are lacking. This study primarily aims to evaluate the effect of the SelfMED intervention on medication adherence 2 months postdischarge in polypharmacy patients, as compared with usual care.Methods and analysisA multicentre pre–post intervention study will be conducted. The study will start with a control phase investigating usual care (ie, medication management entirely provided by healthcare providers), followed by an intervention period, investigating the effects of the SelfMED intervention. SelfMED consists of multiple components: (1) a stepped assessment evaluating patients’ eligibility for in-hospital medication self-management, (2) a monitoring system allowing healthcare providers to follow up medication management and detect problems and (3) a supportive tool providing healthcare providers with a resource to act on observed problems with medication self-management. Polymedicated patients recruited during the control and intervention periods will be monitored for 2 months postdischarge. A total of 225 participants with polypharmacy should be included in each group. Medication adherence 2 months postdischarge, measured by pill counts, will be the primary outcome. Secondary outcomes include self-management, medication knowledge, patient and staff satisfaction, perceived workload and healthcare service utilisation.Ethics and disseminationThe ethics committee of the Antwerp University Hospital approved the study (reference no: B3002023000176). Study findings will be disseminated through peer-reviewed publications, conference presentations and summaries in layman’s terms.Trial registration number ISRCTN15132085.
During adolescence, adolescents and young adults (AYAs) are expected to transfer their care from the pediatric environment towards an adult-focused setting. To prevent an abrupt transfer of care, it ...is recommended to provide AYAs with chronic conditions an adequate transition program. The aim of this paper is to describe the study protocol for the development of a transition program for AYAs with common chronic conditions (COCCOS study), using the Experience-Based Co-Design (EBCD) methodology.
A qualitative, participatory study is conducted in Flanders (Belgium). Study participants are AYAs (n≥15, 14-25 years old, diagnosed with type 1 diabetes, asthma, or obesity), their families, and healthcare providers (n≥15). The study is composed of eight EBCD stages: clinical site observations, in-depth interviews, trigger film, healthcare providers' feedback event, AYAs' feedback event, joint event, co-design workshops, and a celebration event. Photovoice will take place as a starting point of EBCD. Data will be analyzed using thematic analysis.
Data collection has started in January 2023 and is expected to be completed in May 2024. As of August 2023, over 15 clinical site observations have been conducted. A total of 18 AYAs, two parents, six healthcare providers have been enrolled and a total of 20 interviews have been conducted.
Advancing transitional care is essential for tackling negative health outcomes. Applying the innovative participatory EBCD methodology will reveal key elements of transitional care for AYAs with common chronic conditions in the development of a person-centered transition program.
Study findings will apply key elements of transitional care of AYAs with chronic conditions in the development of an adequate transition program.
Background The majority of people born with congenital heart disease require lifelong cardiac follow-up. However, discontinuity of care is a recognized problem and appears to increase around the ...transition to adulthood. We performed a systematic review and meta-analysis to estimate the proportion of adolescents and emerging adults with congenital heart disease discontinuing cardiac follow-up. In pooled data, we investigated regional differences, disparities by disease complexity, and the impact of transition programs on the discontinuity of care. Methods and Results Searches were performed in PubMed, Embase, Cinahl, and Web of Science. We identified 17 studies, which enrolled 6847 patients. A random effects meta-analysis of single proportions was performed according to the DerSimonian-Laird method. Moderator effects were computed to explore sources for heterogeneity. Discontinuity proportions ranged from 3.6% to 62.7%, with a pooled estimated proportion of 26.1% (95% CI, 19.2%-34.6%). A trend toward more discontinuity was observed in simple heart defects (33.7%; 95% CI, 15.6%-58.3%), compared with moderate (25.7%; 95% CI, 15.2%-40.1%) or complex congenital heart disease (22.3%; 95% CI, 16.5%-29.4%) (
=0.2372). Studies from the United States (34.0%; 95% CI, 24.3%-45.4%), Canada (25.7%; 95% CI, 17.0%-36.7%), and Europe (6.5%; 95% CI, 5.3%-7.9%) differed significantly (
=0.0004). Transition programs were shown to have the potential to reduce discontinuity of care (12.7%; 95% CI, 2.8%-42.3%) compared with usual care (36.2%; 95% CI, 22.8%-52.2%) (
=0.1119). Conclusions This meta-analysis showed that there is a high proportion of discontinuity of care in young people with congenital heart disease. The highest discontinuity proportions were observed in studies from the United States and in patients with simple heart defects. It is suggested that transition programs have a protective effect. Registration URL: www.crd.york.ac.uk/prospero. Unique identifier: CRD42020182413.
Young people with congenital heart disease (CHD) are frequently affected by discontinued follow-up when transferring from paediatric to adult care. Identified predictors for discontinuation include ...mostly patient-related factors, and further knowledge of hospital and healthcare system factors is needed.BACKGROUNDYoung people with congenital heart disease (CHD) are frequently affected by discontinued follow-up when transferring from paediatric to adult care. Identified predictors for discontinuation include mostly patient-related factors, and further knowledge of hospital and healthcare system factors is needed.This study aims to explore patient-related, hospital-related and healthcare system-related factors affecting continued follow-up care after transfer, as perceived and experienced by paediatric cardiology and adult CHD (ACHD) healthcare providers (HCPs) in Sweden and Belgium.AIMThis study aims to explore patient-related, hospital-related and healthcare system-related factors affecting continued follow-up care after transfer, as perceived and experienced by paediatric cardiology and adult CHD (ACHD) healthcare providers (HCPs) in Sweden and Belgium.This descriptive qualitative study included individual interviews with cardiologists, nurses and administrative staff, subjected to qualitative content analysis. A total of 30 HCPs from 13 specialist care outpatient clinics at 8 different centres in Sweden and Belgium were interviewed. HCPs were included if they had direct contact with patients and had at least 1 year of work experience.METHODSThis descriptive qualitative study included individual interviews with cardiologists, nurses and administrative staff, subjected to qualitative content analysis. A total of 30 HCPs from 13 specialist care outpatient clinics at 8 different centres in Sweden and Belgium were interviewed. HCPs were included if they had direct contact with patients and had at least 1 year of work experience.The findings illuminate three main categories of factors perceived by HCPs to affect continued follow-up care after transfer, including 'care structure', 'care processes' and 'patient characteristics and circumstances'. Success was described as multifactorial, emphasising processes and structures of care, with a focus on collaboration, organisation, joint responsibility, resources, care relationships and transitional care interventions. Few differences appeared between paediatric and ACHD HCPs and between Swedish and Belgian HCPs.FINDINGSThe findings illuminate three main categories of factors perceived by HCPs to affect continued follow-up care after transfer, including 'care structure', 'care processes' and 'patient characteristics and circumstances'. Success was described as multifactorial, emphasising processes and structures of care, with a focus on collaboration, organisation, joint responsibility, resources, care relationships and transitional care interventions. Few differences appeared between paediatric and ACHD HCPs and between Swedish and Belgian HCPs.HCPs perceived factors on patient, hospital and healthcare system levels to influence continued follow-up. Process-related and structure-related aspects of care were perceived as more influential than individual patient characteristics. Hence, future research on discontinued follow-up care should focus on process-related and structure-related aspects of care delivery.CONCLUSIONHCPs perceived factors on patient, hospital and healthcare system levels to influence continued follow-up. Process-related and structure-related aspects of care were perceived as more influential than individual patient characteristics. Hence, future research on discontinued follow-up care should focus on process-related and structure-related aspects of care delivery.
A substantial proportion of young people with Complex Chronic Conditions (CCCs) experience some degree of discontinuation of follow-up care, which is an umbrella term to describe a broken chain of ...follow-up. Discontinuation of follow-up care is not clearly defined, and the great plethora of terms used within this field cannot go unnoticed. Terms such as "lost to follow-up", "lapses in care" and "care gaps", are frequently used in published literature, but differences between terms are unclear. Lack of uniformity greatly affects comparability of study findings. The aims of the present study were to (i) provide a systematic overview of terms and definitions used in literature describing discontinuation of follow-up care in young people with CCC's; (ii) to clarify operational components of discontinuation of follow-up care (iii); to develop conceptual definitions and suggested terms to be used; and (iv) to perform an expert-based evaluation of terms and conceptual definitions.
A systematic literature search performed in PubMed was used to provide an overview of current terms used in literature. Using a modified summative content analysis, operational components were analysed, and conceptual definitions were developed. These conceptual definitions were assessed by an expert panel using a survey.
In total, 47 terms and definitions were retrieved, and a core set of operational components was identified. Three main types of discontinuation of follow-up care emerged from the analysis and expert evaluation, conceptually defined as follows: Lost to follow-up care: "No visit within a defined time period and within a defined context, and the patient is currently no longer engaged in follow-up care"; Gap in follow-up care: "Exceeded time interval between clinic visits within a defined context, and the patient is currently engaged in follow-up care"; and Untraceability: "Failure to make contact due to lack of contact information".
By creating a common vocabulary for discontinuation of follow-up care, the quality of future studies could improve. The conceptual definitions and operational components provide guidance to both researchers and healthcare professionals focusing on discontinuation of follow-up care for young people with CCCs.
As a result of advances in pediatric care, the majority of patients born with congenital heart disease (CHD) survive into adulthood 1. Effective transfer and transition programs assure that patients ...with CHD remain in follow-up and receive continuous holistic care. Unfortunately, adult patients with CHD carry residual lesions and sequelae putting them at risk for premature death related to re-interventions or complications; most commonly heart failure and arrhythmia 2. The scientific adult CHD (ACHD) community has been working hard to identify variables related to worse outcomes, modifying those where possible in order to improve survival. Indeed, survival in adults with CHD has increased, but consequently, on top of CHD-related complications, patients are increasingly exposed to the standard cardiovascular risk factors. Therefore, a program for lifelong coaching on health behavior and life style management becomes indispensable. More emerging is that a substantial number of patients, in particular those with complex heart defects, will eventually end up in a stage with hardly any medical or interventional options left. Our healthcare provision has to be prepared to organize care for this specific group of patients who will die prematurely and require the timely development and establishment of advanced care planning. Advanced care planning should preferentially be set-up in expert CHD centers. The long-lasting relationship in ACHD care with healthcare providers offers an excellent basis with regards to prognosis, advanced care planning and end-of-life issues.
•More and more patients with congenital heart disease survive their congenital disease related complications•As a consequence, congenital heart disease patients become increasingly exposed to age related complications•Health care providers have to be aware of this shift in underlying cause of complications and related ways of death•Timely advanced care planning can anticipate on this by focus on prevention, palliation and end-of-life care programs
Constantly searching for a balance between work demands and their own physical and psychological health has challenged medical and nursing staff during the immediate wake of this COVID-19 viral ...epidemic leading to acute stress reactions and psychosomatic symptoms. Coping behavior might be a buffer for work-related stress in relation to mental well-being. The present study aims to evaluate the role of positive and negative stress-reducing activities on healthcare workers' mental and physical well-being.
This was a cross-sectional study using an online survey that was sent out using our network of healthcare workers at the University of Antwerp and through social media. Socio-demographic data, coping behavior with the Palliative Pallet Scale (P3), and distress and somatization using the Four-dimensional symptom checklist were collected. Surveys were completed by 1,376 participants.
The results clearly showed that positive stress-reducing activities are related to fewer symptoms of distress and somatization. Providing direct care to COVID-19 patients was associated with a higher decrease of applying positive stress-reducing activities during the peak of the pandemic compared to the ideal situation. Finally, fewer symptoms of distress and somatization were associated with the following activities: reading, mind sports games, keeping a hobby collection, studying; engaging in sexual activities with your partner; cleaning the house, tidying up, working in the garden, doing household chores; exercising alone; walking, or taking a trip together with someone; exercise together with someone; watching TV, listening/playing (to) music/, playing computer games; playing a card game or other board game; and preparing something extra tasteful outside regular meals.
Our study demonstrated an association between concrete coping behaviors and distress and somatization in healthcare workers during the first peak of the COVID-19 pandemic. The results provide relevant and additional insights to develop and investigate interventions among others in personal leadership and resilience.
In-depth understanding of factors perceived by young people with congenital heart disease (CHD) to affect continued follow-up care is needed to tailor preventive strategies for discontinuation of ...follow-up care. To identify facilitating factors, low-prevalence settings in terms of discontinuation should be investigated.ObjectiveThis qualitative study describes factors affecting continued follow-up as perceived and experienced by young adults with CHD.ParticipantsUsing a mixed purposive sampling technique, 16 young adults with CHD were included. Three participants had discontinued follow-up care and 13 had continued follow-up care after transfer.SettingParticipants were recruited from all seven university hospitals in Sweden, which is considered a low-prevalence setting in terms of discontinuation.DesignIndividual interviews were performed and subjected to qualitative content analysis.ResultsThe analysis resulted in three main categories, illuminating factors affecting continued follow-up: (1) motivation for follow-up care; (2) participation in care and sense of connectedness with healthcare provider (HCP) and (3) care accessibility. The choice of continuing follow-up or not was multifactorial. Knowledge of your CHD and the importance of continuing follow-up care was a central factor, as well as experiencing CHD-related symptoms and having ongoing or planned medical treatment or interventions. Sensing a clear purpose with follow-up care was facilitating, as was feeling well treated and cared for by HCPs. Practical aspects, such as travel distance was also stressed, as well as active invitations and reminders for visits.ConclusionFactors on both patient, hospital and healthcare system level were raised by participants, stressing the importance of holistic approaches when developing preventive strategies for discontinuation. There is a need for improved skills and competencies among HCPs, as well as a person-centred approach to follow-up care. In addition, specific healthcare needs and remaining transitional needs after transfer to adult care require careful consideration to prevent discontinuation.
Adolescents with congenital heart disease (CHD) must take responsibility for their life and care. This requires that they have sufficient knowledge about their heart disease, treatment, and ...preventive measures. Thus, CHD-related education should be directed to adolescents. Research on adolescents' understanding and knowledge of CHD is limited. It is unknown what adolescents with CHD know about their heart defect, treatment, and preventive measures necessary to avoid complications. We addressed these questions in a descriptive cross-sectional study of 91 adolescents with CHD (53% males; median age 17 years). In the present study, we assessed the subjects' knowledge of CHD using the Leuven Knowledge Questionnaire for Congenital Heart Disease. The results showed that the patients had adequate knowledge (>80% correct answers) about the need for regular follow-up, their required diet, past treatment, and dental practices. They had moderate knowledge (50% to 80% correct answers) about the frequency of follow-up, occupational choices, medication regimen, and sexual activities. However, the patients had poor knowledge (<50% correct answers) of the name of their heart defect; the reasons for follow-up; the effects of competitive sports; the symptoms that reflect deterioration of their heart disease; the definition, characteristics, and risk factors of endocarditis; the possibility of recurrent episodes of endocarditis during their lifetime; the effect of smoking and alcohol on their heart disease; the hereditary nature of their condition; the suitability of intrauterine devices as contraceptives; the appropriateness of oral contraceptives; and the risks of pregnancy. In conclusion, the results of the present study have showed that the level of knowledge of adolescents with CHD has significant gaps.
Patient empowerment is associated with improvements in different patient-reported and clinical outcomes. However, despite being widely researched, high quality and theoretically substantiated ...disease-generic measures of patient empowerment are lacking. The few good instruments that are available have not reported important psychometric properties, including measurement invariance. The aim of this study was to assess the psychometric properties of the 15-item Gothenburg Empowerment Scale (GES), with a particular focus on measurement invariance of the GES across individuals from three countries. Adults with congenital heart disease from Belgium, Norway and South Korea completed the GES and other patient-reported outcomes as part of an international, cross-sectional, descriptive study called APPROACH-IS II. The scale's content (missing data) and factorial validity (confirmatory factor analyses), measurement invariance (multi-group confirmatory factor analyses), responsiveness (floor and ceiling effects) and reliability (internal consistency) were assessed. Content validity, responsiveness and reliability were confirmed. Nonetheless, metric but not scalar measurement invariance was supported when including the three countries, possibly because the scale performed differently in the sample from South Korea. A second set of analyses supported partial scalar invariance for a sample that was limited to Norway and Belgium. Our study offers preliminary evidence that GES is a valid and reliable measure of patient empowerment in adults with congenital heart disease. However, cross-country comparisons must be made with caution, given the scale did not perform equivalently across the three countries.
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