Content comparison and personcenteredness of standards for quality improvement in cardiovascular health care

Background: Quality standards are important for improving health care by providing compelling evidence for best practice. High quality person-centered health care requires information on patients’ experience of disease and of functioning in daily life. Objective: To analyze and compare the content of five Swedish National Quality Registries (NQRs) and two standard sets of the International Consortium of Health Outcomes Measurement (ICHOM) related to cardiovascular diseases. Materials and methods: An analysis of 2588 variables (= data items) of five NQRs—the Swedish Registry of Congenital Heart Disease, Swedish Cardiac Arrest Registry, Swedish Catheter Ablation Registry, Swedish Heart Failure Registry, SWEDEHEART (including four sub-registries) and two ICHOM standard sets–the Heart Failure Standard Set and the Coronary Artery Disease Standard Set. According to the name and definition of each variable, the variables were mapped to Donabedian’s quality criteria, whereby identifying whether they capture health care processes or structures or patients’ health outcomes. Health outcomes were further analyzed whether they were clinician- or patient-reported and whether they capture patients’ physiological functions, anatomical structures or activities and participation. Results: In total, 606 variables addressed process quality criteria (31%), 58 structure quality criteria (3%) and 760 outcome quality criteria (38%). Of the outcomes reported, 85% were reported by clinicians and 15% by patients. Outcome variables addressed mainly ‘Body functions’ (n = 392, 55%) or diseases (n = 209, 29%). Two percent of all documented data captured patients’ lived experience of disease and their daily activities and participation (n = 51, 3% of all variables). Conclusions: Quality standards in the cardiovascular field focus predominately on processes (e.g. treatment) and on body functions-related outcomes. Less attention is given to patients’ lived experience of disease and their daily activities and participation. The results can serve as a starting-point for harmonizing data and developing a common person-centered quality indicator set

Identification of problems in the functioning of individuals with schizophrenia from the expert perspective: An internet-based survey

Purpose: The purpose of the study was to identify aspects of functioning and related environmental factors that are relevant to schizophrenia from the perspective of health professionals experienced in treating individuals with this disorder using the International Classification of Functioning, Disability and Health (ICF). Method: An international pool of experts from diverse health care disciplines was surveyed to identify problems in functioning experienced by individuals with schizophrenia and the environmental factors that impact their functioning. On the basis of established rules, all answers were translated to the ICF by two independent researchers. Results: One-hundred and eighty-nine experts from all six World Health Organization regions identified 4776 meaningful concepts, of which 92% were linked to 347 different ICF categories. Of the 347 categories, 194 were second-level categories, 151 were third-level categories and 2 were fourth-level categories. Ninety-five second-level ICF categories, 43 third-level categories and 1 fourth-level category reached percentage frequency of at least 5%. The majority of the categories were attributed to body functions, activities and participation, and environmental factors. Conclusions: Health professionals identified a wide range of problems in functioning that reflect the complexity and breadth of schizophrenia, specifically activity limitations and participation restrictions that are particularly relevant for individuals with schizophrenia. Knowing these functioning problems can guide the design of patient-oriented rehabilitation programmes. Implications for rehabilitation: Schizophrenia may result in impaired functioning in multiple daily life activities. The International Classification of Functioning, Disability and Health (ICF) can help in identifying the needs and problems of these individuals. The reported list of ICF categories can facilitate a systematic application of the ICF in schizophrenia and can help to design and implement coordinated and patient oriented rehabilitation programmes with a biopsychosocial approach. According to health professionals surveyed, activity limitations and participation restrictions are broadly affected in this population and are highly influenced by neurocognitive and social cognitive deficits and environmental factors

Rehabilitation definition for research purposes. A global stakeholders’ initiative by Cochrane Rehabilitation

Negrini S, Selb M, Kiekens C, et al. Rehabilitation definition for research purposes. A global stakeholders initiative by Cochrane Rehabilitation. European Journal of Physical and Rehabilitation Medicine . 2022.Since its foundation, Cochrane Rehabilitation has faced challenges with rehabilitation definitions because existing definitions did not indicate what rehabilitation includes and what it excludes. We aimed to develop a comprehensive and shared rehabilitation definition for research purposes to: 1) support the conduct of primary studies and systematic reviews, and 2) identify relevant systematic reviews for knowledge translation purposes. We performed a multimodal study including seven preliminary research and discussion papers, four Consensus Meetings and three Delphi rounds with 80 rehabilitation stakeholders. The Delphi Study aimed to obtain agreement, refine and complete the items composing the definition and meanings of rehabilitation. These stakeholders covered 5 continents, representing 11 global and continental rehabilitation organizations, 11 scientific journals, 4 Cochrane Networks and 3 Cochrane Groups, and included invited experts, and representatives of low middle-income countries (LMICs) and consumers. We had a 70% to 82.5% response rate to the three Delphi rounds, during which participants responded to all items (100%) and provided relevant comments (range 5.5-50% per item). This participation led to several refinements to the rehabilitation definition through three preliminary versions, and the final items reached an agreement between 88.9% and 100%. We structured the definition using the PICO (Population, Intervention, Comparison, Outcome) framework. We concluded that "In a health care context," rehabilitation is defined as a "multimodal, person-centered, collaborative process" (Intervention-general), including interventions targeting a person's "capacity (by addressing body structures, functions, and activities/participation) and/or contextual factors related to performance" (Intervention-specific) with the goal of "optimizing" the "functioning" (Outcome) of "persons with health conditions currently experiencing disability or likely to experience disability, or persons with disability" (Population). Rehabilitation requires that all the items of the definition are satisfied. We defined a "rehabilitation intervention" as "any intervention provided within the rehabilitation process." We developed a rehabilitation definition for research purposes achieving a broad agreement with global stakeholders. This definition provides explicit criteria to define rehabilitation. Using the proposed definition will improve rehabilitation research by standardizing the description of interventions. Our definition may require revision in the future, as further research enhances understanding and communication of the essence and complexity of rehabilitation

Factors impacting employment for people with autism spectrum disorder: A scoping review

The aim of this study is to holistically synthesise the extent and range of literature relating to the employment of individuals with autism spectrum disorder. Database searches of Medline, CINAHL, PsychINFO, Scopus, ERIC, Web of Science and EMBASE were conducted. Studies describing adults with autism spectrum disorder employed in competitive, supported or sheltered employment were included. Content analysis was used to identify the strengths and abilities in the workplace of employees with autism spectrum disorder. Finally, meaningful concepts relating to employment interventions were extracted and linked to the International Classification of Functioning, Disability and Health Core Sets for autism spectrum disorder. The search identified 134 studies for inclusion with methodological quality ranging from limited to strong. Of these studies, only 36 evaluated employment interventions that were coded and linked to the International Classification of Functioning, Disability and Health, primarily focusing on modifying autism spectrum disorder characteristics for improved job performance, with little consideration of the impact of contextual factors on work participation. The International Classification of Functioning, Disability and Health Core Sets for autism spectrum disorder are a useful tool in holistically examining the employment literature for individuals with autism spectrum disorder. This review highlighted the key role that environmental factors play as barriers and facilitators in the employment of people with autism spectrum disorder and the critical need for interventions which target contextual factors if employment outcomes are to be improved