Establishing the values for patient engagement (PE) in health-related quality of life (HRQoL) research: an international, multiple-stakeholder perspective

PurposeActive patient engagement is increasingly viewed as essential to ensuring that patient-driven perspectives are considered throughout the research process. However, guidance for patient engagement (PE) in HRQoL research does not exist, the evidence-base for practice is limited, and we know relatively little about underpinning values that can impact on PE practice. This is the first study to explore the values that should underpin PE in contemporary HRQoL research to help inform future good practice guidance. MethodsA modified ‘World Café’ was hosted as a collaborative activity between patient partners, clinicians and researchers: self-nominated conference delegates participated in group discussions to explore values associated with the conduct and consequences of PE. Values were captured via post-it notes and by nominated note-takers. Data were thematically analysed: emergent themes were coded and agreement checked. Association between emergent themes, values and the Public Involvement Impact Assessment Framework were explored. ResultsEighty participants, including 12 patient partners, participated in the 90-min event. Three core values were defined: (1) building relationships; (2) improving research quality and impact; and (3) developing best practice. Participants valued the importance of building genuine, collaborative and deliberative relationships—underpinned by honesty, respect, co-learning and equity—and the impact of effective PE on research quality and relevance. Conclusions An explicit statement of values seeks to align all stakeholders on the purpose, practice and credibility of PE activities. An innovative, flexible and transparent research environment was valued as essential to developing a trustworthy evidence-base with which to underpin future guidance for good PE practice.Peer reviewe

Diagnostics and Intervention in Developmental Dyscalculia: Current Issues and Novel Perspectives

Developmental dyscalculia is one of the most prevalent learning disorders observed in children. However, it has received much less research interest than, for instance, developmental dyslexia. Thus our knowledge about aetiology, aetiopathology and symptomatology of dyscalculia remains patchy; and empirically validated approaches on remediation and intervention are still scarce. In the current chapter we first discuss the theoretical underpinnings of developmental dyscalculia, paying particular attention to its still debated aetiology: Some authors suggest the heterogeneous symptoms of developmental dyscalculia to be caused by a single underlying deficit of the number sense, while others propose different deficits in basic numerical competencies as its determinants (as observed in adult acalculia). Second, the implications of this differentiation on dyscalculia diagnostics are discussed. In particular, we focus on the importance of cut off criteria, sample selection, and their influence on the epidemiology of developmental dyscalculia. In a third section, the issue of comorbidity and its estimation will be evaluated. And finally, existing intervention approaches are reviewed in light of their theoretical underpinnings and practical applications. We conclude that we are on a promising way to better understand, diagnose and treat brain-based dyscalculia with innovative novel methodology.publishe