Taking Charge of Your Health: Enabling Patient Empowerment in Cardiovascular Care.

Guidelines and consensus in cardiovascular care in recent years have called for patients to be more involved in their care, which can be achieved by becoming more empowered. Yet, there is little clarity on how healthcare professionals can help the patients achieve this goal. The present paper defines patient empowerment, its benefits and the different strategies that can be used in healthcare to empower them. Moreover, potential barriers in the empowering process are also discussed.

Balancing between being the most valuable player (MVP) and passing the ball: a qualitative study of support when living with chronic pain in Sweden.

OBJECTIVE: This study aimed to elucidate the meaning of lived experiences of support from social networks and the healthcare sector in persons with chronic pain. DESIGN: A qualitative, phenomenological hermeneutic method was used to analyse interview data. SETTING: Participants were recruited from patient organisations in Sweden. PARTICIPANTS: Ten (seven women, two men and one non-binary) individuals with chronic musculoskeletal pain were included. FINDINGS: The meaning of lived experiences of support in persons with chronic pain involves balancing between being the most valuable player (MVP) and passing the ball, meaning balancing between being a capable person and accepting support to be that capable person. CONCLUSION: For participants who lived with chronic pain, support means balancing between being capable (the MVP) and willing to accept support (passing the ball), which aligns with the concept of person-centred care. Our findings may be useful for policy-makers, managers and clinical professionals when planning and performing care for persons with chronic pain. Future research should focus on how the healthcare sector can create support to enable persons with chronic pain to be the MVP while being able to pass the ball to their social networks and the healthcare sector.

Development and psychometric evaluation of TEXP-Q: a questionnaire measuring transition and transfer experiences in emerging adults with type 1 diabetes.

BACKGROUND: During transition to adulthood and transfer to adult healthcare, emerging adults with chronic conditions are at risk of deteriorating disease control, well-being, and acute, as well as long-term complications. Despite an increasing call for person-centred healthcare services attuned to young peoples' needs, few validated instruments exist pinpointing adolescents' and emerging adults' experiences of preparation for transition and transfer. Thus, the overarching purpose of this study was to develop a person-centred, clinically applicable instrument (Transitional care EXPeriences Questionnaire, TEXP-Q) adjustable to different chronic conditions, although the focus in the present study was Type 1 Diabetes. The specific aim was, therefore, to describe the development and psychometric evaluation of TEXP-Q in emerging adults with Type 1 Diabetes. METHODS: Initial development of the TEXP-Q was inspired by existing research. Items were formulated in accordance with consensus recommendations for developing patient-reported measures, and extra consideration was taken to ensure person-centredness. Psychometric evaluation comprised two phases: In phase I, data from cognitive interviews, content validity indexing, and judgement of an expert panel provided information on face and content validity. In phase II, data from a cross-sectional study conducted at eight adult diabetes outpatient clinics in Sweden (n = 163) allowed for explorative factor analysis (EFA), as well as calculation of content validity, reliability and responsiveness. RESULTS: Combining results from cognitive interviews, content validity index values and expert panel judgement, a test version of TEXP-Q was developed, the content and face validity of which were considered good. This version consisted of 17 items answered on a five-point Likert scale, and three open-ended questions answered in free text. During EFA, four items were removed, and a three-factor solution was recognised as most adequate, accounting for 60% cumulative variance and one single cross-loading. After EFA, the instrument comprised 13 questions, divided into three latent factors. Cronbach's alpha for the complete instrument was 0.866, which indicates good internal consistency. Crohnbach's alpha approximated to 0.8 for all factors respectively. CONCLUSION: TEXP-Q is a newly developed, person-centred instrument which has proven to be both valid and reliable when applied to youths with T1D. The questionnaire fills a need for instruments focusing on emerging adults' experiences of preparation for transition and transfer.

Accelerating knowledge translation to improve cardiovascular outcomes and health services: opportunities for bridging science and clinical practice.

Knowledge translation (KT) is the exchange between knowledge producers and users to understand, synthesize, share, and apply evidence to accelerate the benefits of research to improve health and health systems. Knowledge translation practice (activities/strategies to move evidence into practice) and KT science (study of the methodology and approaches to promote the uptake of research) benefit from the use of conceptual thinking, the meaningful inclusion of patients, and the application of intersectionality. In spite of multiple barriers, there are opportunities to develop strong partnerships and evidence to drive an impactful research agenda and increase the uptake of cardiovascular research.

Effectiveness of the STEPSTONES Transition Program for Adolescents With Congenital Heart Disease-A Randomized Controlled Trial.

PURPOSE: Adolescents with congenital heart disease transition from childhood to adulthood and transfer from pediatric-oriented to adult-oriented care. High-level empirical evidence on the effectiveness of transitional care is scarce. This study investigated the empowering effect (primary outcome) of a structured person-centered transition program for adolescents with congenital heart disease and studied its effectiveness on transition readiness, patient-reported health, quality of life, health behaviors, disease-related knowledge, and parental outcomes e.g., parental uncertainty, readiness for transition as perceived by the parents (secondary outcomes). METHODS: The STEPSTONES-trial comprised a hybrid experimental design whereby a randomized controlled trial was embedded in a longitudinal observational study. The trial was conducted in seven centers in Sweden. Two centers were allocated to the randomized controlled trial-arm, randomizing participants to intervention or control group. The other five centers were intervention-naïve centers and served as contamination check control group. Outcomes were measured at the age of 16 years (baseline), 17 years, and 18.5 years. RESULTS: The change in empowerment from 16 years to 18.5 years differed significantly between the intervention group and control group (mean difference = 3.44; 95% confidence interval = 0.27-6.65; p = .036) in favor of intervention group. For the secondary outcomes, significant differences in change over time were found in parental involvement (p = .008), disease-related knowledge (p = .0002), and satisfaction with physical appearance (p = .039). No differences in primary or secondary outcomes were detected between the control group and contamination check control group, indicating that there was no contamination in the control group. DISCUSSION: The STEPSTONES transition program was effective in increasing patient empowerment, reducing parental involvement, improving satisfaction with physical appearance, and increasing disease-related knowledge.

Implementation fidelity of a transition program for adolescents with congenital heart disease: the STEPSTONES project.

BACKGROUND: Although transition programs have been evaluated for adolescents with chronic conditions, these have rarely involved process evaluations. Indeed, outcomes of complex interventions are dependent on how the intervention is implemented in practice and evaluations of implementation process are therefore pivotal. The aim of this study was to evaluate the extent to which a transition program for adolescents with congenital heart disease was delivered as intended. Research questions were 1) to what level of fidelity was the program delivered? and 2) what potential moderating factors affected the delivery of the program and overall fidelity? METHODS: A mixed methods design was used, where a process evaluation was embedded in the STEPSTONES randomized controlled trial in Sweden. The implementation fidelity framework by Carrol (2007) and Hasson (2010) was used to design, collect and analyze data. Quantitative data consisted of intervention records on adherence and were analyzed with descriptive statistics. Qualitative data on moderators affecting fidelity were collected through interviews, log-books and focus group interviews with healthcare professionals implementing the intervention and participatory observations of the implementation process. Data were analyzed with deductive content analysis. Triangulation was used to integrate quantitative and qualitative data within the fidelity framework. RESULTS: Six out of eight components of the transition program were delivered to an extent that adhered to the program theory or achieved a high level of fidelity. However, components involving peer support had a low attendance by the participating sample (32.2%), and the joint transfer meeting was challenging to implement, despite achieving high adherence. Moderators affecting the implementation process were the adolescent's and healthcare professional's engagement in the intervention, contextual factors and a lack of standard operating procedures for all components in the program. CONCLUSION: Barriers and facilitators for a future implementation of transition programs have been illuminated in this study. The use of an implementation fidelity framework in the process evaluation proved successful in providing a comprehensive evaluation of factors affecting the implementation process. However, implementation fidelity must be considered in relation to adaptations to the local and personal prerequisites in order to create interventions that can achieve fit.

Mechanisms of impact and experiences of a person-centred transition programme for adolescents with CHD: the Stepstones project.

BACKGROUND: During the past decade there has been some evaluation of transition programmes for adolescents with chronic conditions. However, this has rarely involved process evaluations focusing on mechanisms leading to outcomes, thus hampering implementation of these complex interventions. Our aim was to (I) describe adolescents' and parents' experiences of participating in a person-centred transition programme aiming to empower them in transition to adulthood and (II) explore the mechanisms of impact. METHODS: A qualitative process evaluation was performed, embedded in a randomized controlled trial evaluating the effectiveness of a transition programme for adolescents with congenital heart disease in Sweden. A purposive sample of 14 adolescents and 12 parents randomized to the intervention group were interviewed after participation in the programme. Data were analysed deductively and inductively in NVivo v12. RESULTS: Experiences of participation in the transition programme were generally positive. Meeting a transition coordinator trained in person-centred care and adolescent health and embarking on an educational process based on the adolescents' prerequisites in combination with peer support were considered key change mechanisms. However, support to parents were not sufficient for some participants, resulting in ambivalence about changing roles and the unmet needs of parents who required additional support. CONCLUSIONS: Participants experienced increased empowerment in several dimensions of this construct, thus demonstrating that the transition programme was largely implemented as intended and the evidence-based behaviour-change techniques used proved effective in reaching the outcome. These findings can inform future implementation of transition programmes and illuminate challenges associated with delivering a complex intervention for adolescents with chronic conditions.

When face-to-face interviews are not possible: tips and tricks for video, telephone, online chat, and email interviews in qualitative research.

Face-to-face interviews have long been the norm for conducting qualitative interviews in healthcare research. However, the Covid-19 pandemic has accelerated the need to explore alternative methods. This, along with the swift digitalization of healthcare, has led to video, telephone, and online interactions becoming increasingly used. The use of new techniques to carry out interviews through video, telephone, and online applications all come with benefits and drawbacks. In this article, three ways of collecting data through qualitative interviews are described and their uses exemplified through a project investigating the impact of a transition program for adolescents with congenital heart disease.

Factors affecting adolescents' participation in randomized controlled trials evaluating the effectiveness of healthcare interventions: the case of the STEPSTONES project.

BACKGROUND: Recruitment of adolescents to intervention studies is a known challenge. For randomized controlled trials (RCT) to be generalizable, reach must be assessed, which means ascertaining how many of the intended population actually participated in the trial. The aim of this study was to evaluate the reach and representativeness of an RCT evaluating the effectiveness of a complex intervention for adolescents with chronic conditions. METHODS: A mixed methods sequential explanatory design was employed. Firstly, quantitative cross-sectional data from the RCT, patient registries and medical records were collected and analysed regarding baseline differences between participants and non-participants in the trial. Secondly, qualitative data on their reasons for participating or not were collected and analysed with content analysis to explain the quantitative findings. RESULTS: Participants showed larger differences in effect sizes and a significantly more complex chronic condition than non-participants. No other statistically significant differences were reported, and effect sizes were negligible. Reasons for declining or accepting participation were categorized into three main categories: altruistic reasons, personal reasons and external reasons and factors. CONCLUSIONS: Integration of quantitative and qualitative findings showed that participation in the RCT was affected by disease complexity, the perceived need to give back to healthcare and research and the adolescents' willingness to engage in their illness. To empower adolescents with chronic conditions and motivate them to participate in research, future intervention studies should consider developing tailored recruitment strategies and communications with sub-groups that are harder to reach.

Process evaluation of complex cardiovascular interventions: How to interpret the results of my trial?

Complex interventions of varying degrees of complexity are commonly used and evaluated in cardiovascular nursing and allied professions. Such interventions are increasingly tested using randomized trial designs. However, process evaluations are seldom used to better understand the results of these trials. Process evaluation aims to understand how complex interventions create change by evaluating implementation, mechanisms of impact, and the surrounding context when delivering an intervention. As such, this method can illuminate important mechanisms and clarify variation in results. In this article, process evaluation is described according to the Medical Research Council guidance and its use exemplified through a randomized controlled trial evaluating the effectiveness of a transition program for adolescents with chronic conditions.

Empowering Young Persons with Congenital Heart Disease: Using Intervention Mapping to Develop a Transition Program - The STEPSTONES Project.

PURPOSE: Describe the implementation of intervention mapping in the development of a transition program that aims to empower adolescents with congenital heart disease. DESIGN AND METHODS: To gain a better understanding of the problem, we conducted a literature review, focus group and individual interviews, and a cross-sectional survey. This information helped us decide on the scope of the intervention, relevant theories, determinants, formulate performance and change objectives and identify adequate evidence-based change methods. Once the transition program had been designed, effectiveness and process evaluation studies were planned. RESULTS: Young persons with congenital heart disease have insufficient disease-related knowledge, self-management skills and high parental involvement. The transition program involves three meetings with a trained transition coordinator over a two-and-a-half-year period and targets young persons with congenital heart disease and their parents. The transition coordinators use change techniques such as goal-setting, modeling and active learning in order to target three personal determinants (knowledge, self-efficacy and self-management). CONCLUSIONS: The use of intervention mapping may lead to designing interventions tailored to the needs of the targeted population. The transition program described in this paper is currently being evaluated in a hybrid experimental design with simultaneous undertaking of the process evaluation. PRACTICE IMPLICATIONS: This transition program can lead to the empowerment of young persons with congenital heart disease and help them in the process of becoming more responsible for their care. If proven effective, it can be implemented for other chronic conditions.

The Scope of Research on Transfer and Transition in Young Persons With Chronic Conditions.

PURPOSE: To determine the amount, type, and evidence level of published literature on transfer and/or transition of young people with chronic conditions (CCs) and to describe the characteristics of such studies. METHODS: Databases including PubMed, CINAHL, Web of Science, and Scopus were searched for publications in English, French, Spanish, Dutch, or Swedish. Included publications were related to transfer and/or transition of young persons (10-25 years) with a CC. Grey literature was excluded. Region and country where the study was performed, type of study design, study population (i.e., type of CC, sample size, group), and data collection methods were extracted from the studies. RESULTS: We included 952 publications for data analysis, of which 790 were quantitative, 128 qualitative, and 34 multimethods or mixed methods studies. Only seven studies were experimental designs, and the majority (n = 341) were categorized as expert opinion or narrative reviews. Endocrinology and neurology were the most common medical specialties involved in the studies, and young persons were the most represented group, while health-care providers were involved the least. CONCLUSIONS: The majority of publications are categorized at the lowest evidence level. Furthermore, evidence is limited to a certain group of medical specialties.

Transition program for adolescents with congenital heart disease in transition to adulthood: protocol for a mixed-method process evaluation study (the STEPSTONES project).

INTRODUCTION: Today, the majority of young persons living with chronic conditions in high-income countries survive into adulthood and will need life-long medical follow-up. Therefore, transition programmes have been developed to facilitate transfer to adult care, and to support self-management and independence during adulthood. The Swedish Transition Effects Project Supporting Teenagers with chrONic mEdical conditionS (STEPSTONES) project aims to evaluate the effectiveness of a person-centred transition programme for empowering adolescents with congenital heart disease in transition to adulthood. To understand how the transition programme causes change and how outcomes are created, process evaluation is imperative to assess implementation, context and mechanisms of impact. This protocol aims to describe the process evaluation of the STEPSTONES transition programme. METHODS AND DESIGN: Medical Research Council guidance for process evaluation of complex interventions will be the guiding framework for this mixed-method study. The combination of qualitative and quantitative data will capture different aspects of programme delivery. The sample will consist of participants in the STEPSTONES randomised controlled trial (RCT), persons implementing the programme and healthcare professionals. Quantitative data will consist of protocols and routine monitoring documents from the RCT, data collected from patient registries and sociodemographic data to assess the implementation of the intervention. This data will be analysed with quantitative content analysis, along with descriptive and inferential statistics. Qualitative data will consist of participatory observations, logbooks and interviews with persons implementing the programme, participants and healthcare professionals. Analyses will be performed using qualitative content analysis to investigate mechanism of impact, context and delivery. Quantitative and qualitative data will be integrated in the final stage by using a triangulation protocol according to mixed-method guidelines. ETHICS AND DISSEMINATION: The study is approved by the Regional Ethical Review Board in Gothenburg, Sweden. Results will be presented in open access, peer-reviewed journals and at international scientific conferences.