What really matters: a patient-centered instrument to evaluate health-related quality of life in cardiovascular disease.

AIMS: Patient-reported outcome measures (PROMs) to assess health-related quality of life (HRQoL) are increasingly used to guide decision-making in cardiovascular care. However, many of the existing PROMs are developed with limited patient involvement and overlook personal health preferences. We aim to develop a cardiovascular disease (CVD)-specific patient-centred preference-based PROM to assess and monitor HRQoL in CVD patients. METHODS AND RESULTS: A mixed-methods study consisting of several phases was conducted to identify important health items: (i) a scoping literature review, (ii) first- and second-round expert group meetings, (iii) interviews with CVD patients, and (iv) an online survey asking CVD patients to indicate from a large set those health items that are considered the most important. The literature review, expert group meetings, and patient interviews resulted in a list of 55 items potentially important to CVD patients. In total, 666 CVD patients responded to the survey. The following nine items were considered the most important by CVD patients: mobility, activities, self-reliance, fatigue, shortness of breath, chest pain, palpitations, anxiety/worrying, and sexual limitations. An electronic preference-based PROM consisting of these nine items was developed within a cloud-based environment for clinical implementation. CONCLUSION: Nine items considered the most important for health by CVD patients were identified and included in a new preference-based patient-centred PROM. This new CVD-specific PROM can be easily implemented using the electronic application and has the potential to improve quality of care for CVD patients.

Patient involvement in cardiovascular research: a qualitative impact evaluation.

BACKGROUND & OBJECTIVE: Involving patients in scientific research has been shown to improve the relevance of the research, as well as its quality and applicability. Harteraad, the Dutch patient organization for people with cardiovascular diseases, has a Committee of Experienced Experts (patients) advising researchers on the content of grant proposals prior to submission. Until now, the impact of the committee's advice was unknown. This study, initiated by Harteraad, aimed to evaluate the impact of the provided advice on the content of grant proposals and investigate how to strengthen this impact. METHODS: Fourteen grant proposals both prior to and after receiving the committee's advice were compared in order to analyse how the advice had been incorporated into the final proposal. Subsequently, 10 researchers who received the committee's advice were interviewed. Moreover, a focus group discussion was conducted with five committee members. RESULTS: Document analysis showed that almost 40% of the advice was incorporated in the final grant proposals. Researchers made several changes to their proposals, such as increasing the extent of patient involvement throughout the research, use of simpler language, and/or adding information on the consequences of an intervention for patients. Advice requiring fundamental changes in the research design was most often not incorporated. This finding was confirmed by the interviewees, although some stressed to use the committee's advice later on during the execution of the research. According to the interviewees and members of the committee, the impact of the committee's advice could be strengthened in several ways, including 1) improving training/education for researchers and the committee, 2) organizing dialogues between patients and researchers, 3) aligning perspectives between funding bodies and patient organizations on what is expected from researchers, 4) making it obligatory for the researchers to clarify how the patient's advice was incorporated, and 5) fostering researchers' internal motivation for involvement. Committee members have contributed to implementing these recommendations. CONCLUSION: The committee's advice has considerable impact on the content of grant proposals. However, effort is required to increase the value that is currently attributed to patient involvement, and to support researchers in the required organizational and cultural changes to meaningfully involve patients in research.

When to invest in clinical guidelines for children? A practice oriented tool to facilitate decision-making.

RATIONALE, AIMS AND OBJECTIVES: Children are not just small adults; they need to be diagnosed and treated in the context of their rapid growth and development. However, in guideline development, children's needs and interests are still overlooked. This study aims (1) to develop a tool that could stimulate guideline developers to take children into account on a more structural basis and (2) to explore how to facilitate children's participation in the process of guideline development. METHODS: The method used was a three-phase multimethod sequential design. Professionals involved in guideline development participated in interviews (n = 12), filled in a questionnaire (n = 60) and/or participated in the focus group meeting (n = 11). RESULTS: This study results in a comprehensive understanding of the considerations that professionals take into account when deciding whether guidelines need to apply to children specifically. This resulted in a tool that assists guideline developers to make this assessment more accurately. It takes the form of a flowchart that guides users through a series of critical questions. CONCLUSIONS: The flowchart reminds guideline developers to consider children as a particular patient population when prioritizing and demarcating new guideline topics. It will help to ensure that clinical guidelines address children's unique health care needs and perspectives. Facilitating children's and parents' participation in the process of guideline development is perceived as challenging; nevertheless, it should be the next step in making paediatric guidelines more child-centred and family-centred.

Health professionals' perspectives on children's and young people's participation in health care: a qualitative multihospital study.

AIMS AND OBJECTIVES: To investigate healthcare professionals' perspectives on child participation in paediatric hospital care and their opinions on improving participation practices. BACKGROUND: Some scholars argue that the decision-making capacities of children largely depend on the attitudes of healthcare professionals rather than on the children's own competences. Healthcare professionals' perspectives on children's participation in hospital care remain largely unexplored. DESIGN: Qualitative descriptive design. METHODS: Healthcare professionals (n = 32) from 10 paediatric wards in the Netherlands participated in semi-structured interviews. Shier's Pathways to Participation model (2001) was used to guide the interviews. RESULTS: Participation is not a term that is frequently used by professionals; however, they feel familiar with the ideas underlying the term, and it is perceived as being at the core of their work. Professionals believe that high levels of participation are possible in basic care for children. Participation in medical decision-making is considered to be more complex and subject to a number of reservations and restrictions. The participants expressed a strong need to enhance child participation in service evaluation and to increase the respect for and understanding of the rights of children to participate outside of the paediatric unit, including in the surgery and emergency departments. CONCLUSION: Children do not currently participate in the assessment of hospital services. Creative methods that support the role of children in evaluating and improving the quality of paediatric hospital care and services should be developed. Hospital-wide policies could help to promote understanding of child participation among all professionals caring for children in hospitals. RELEVANCE TO CLINICAL PRACTICE: Based on international agreements that the Netherlands has ratified, professionals have the duty to facilitate child participation in hospital care. Concrete opportunities and ideas on how to accomplish this goal in practice are provided, and areas for improvement are identified.

'[I would like] a place to be alone, other than the toilet'--Children's perspectives on paediatric hospital care in the Netherlands.

BACKGROUND: Although it is widely recognized that children are willing, capable and legally entitled to be active participants in their health care, parents are generally invited to evaluate paediatric hospital care and services rather than children themselves. This is problematic because parents cannot serve as the only spokespersons for the perspectives and experiences of children. OBJECTIVE: To investigate children's experiences with and perspectives on the quality of hospital care and services in the Netherlands, and how they think care and services could be improved. DESIGN: A qualitative study incorporating different participatory data collection methods, including photovoice and children writing a letter to the chief executive of the hospital. SETTING: Paediatric departments of eight hospitals in the Netherlands (two teaching and six regional). PARTICIPANTS: Children and adolescents (n = 63) with either acute or chronic disorders, aged between 6 and 18 years. RESULTS: The research results provide insights into children's health and social well-being in hospitals. Important aspects of health, like being able to sleep well and nutrition that fits children's preferences, are structurally being neglected. CONCLUSION: The participatory approach brought children's ideas 'alive' and generated concrete areas for improvement that stimulated hospitals to take action. This demonstrates that participatory methods are not merely tools to gather children's views but can serve as vehicles for creating health-care services that more closely meet children's own needs and wishes.