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Health is a complex process with potentially interacting components from the molecular to the societal and environmental level. Adequate research designs and data analysis methods are needed to improve our understanding of this complexity, to ultimately derive high quality evidence to inform patients, health professionals, and health policy decision makers. Also, effective patient-centred health care has to address the complexity of health, functioning, and disability, not only by implementing interventions, but also by using information technologythatrepresentsthecomplexityofhealthcaretoinformallactors. Given this background, we developed the concept of our conference HEC2016 as an interdisciplinary European event in beautiful Bavaria, in the city of Mu ¨nchen. Quite ironically this is the place, where William of Ockham, whose ideas of parsimony are the very opposite of complexity, accused of heresy, spent 17 years under the protection of the Bavarian King Ludwig IV. Furthermore, our local public health hero Max von Pettenkofer (1818–1901) contributed a lot to the basic systemic understanding of health, especially the relevance of a healthy environment. Under the joint theme of health as a complex system we joined the activities of five scientific disciplines: Medical Informatics, Medical Biometry, Bioinformatics, Epidemiology and Health Data Management. The mission behind this interdisciplinary effort was to serve as an important scientific forum for the exchange of new ideas and applications to strengthen health sciences on a national and international level. The analysis of health as a complex system opens needed perspectives on a challenging reality: filtering current hypotheses, resolving controversies, and tailoring interventions to the need of the individual within a health system environment. The conference encouraged the dialogue of the disciplines in order to advance our understanding of health and to decrease burden of disease. HEC2016 brought together the annual conferences of the German Association for Medical Informatics, Biometry and Epidemiology (GMDS), the German Society for Epidemiology (DGEpi), the International Epidemiological Association- European Region (IEA-EEF) and the European Federation for Medical Informatics Association
(EFMI, MIE 2016). HEC2016 took place in Mu ¨nchen, Germany, in the main building of the Ludwig-Maximilians-Universita ¨t (LMU) from 28 August to 2 September 2016 under the auspices of the Institute for MedicalInformationProcessing,BiometryandEpidemiologyofLMU. The conference received 832 contributions for oral and poster presentation (Table 1). Fourteen percent of them were from outside Europe with the largest group of 10 % from Asia (Table 2). Scientific program committees and reviewers selected 408 submissions as oral contributions and 303 for poster presentations. The program was surrounded by twelve tutorials held by international renowned scientists and covered a broad spectrum from innovative biostatistical and epidemiological methods to tutorials in application of innovative software, scientific writing and data protection issues. Over 50 panel discussions and workshops allowed in-depth exchange of ideas on specific topics and underscored the interactive nature of HEC2016. A special focus of HEC2016 was on the promotion of young scientists from all disciplines whose participation was supported by numerous travel grants. We would like to express our deepest gratitude to all the colleagues who supported us as speakers, committee members and reviewers, lent us a hand before, during and after the conference, gave critical but friendly comments at all stages of the preparations, supported us by providing coffee, audience or Butterbrezen, and specifically to those who submitted contributions to the conference and attended the conference and its many tutorials, lectures and sessions. We extend our gratitude to the Deutsche Forschungsgemeinschaft for generous financial support (grant no. GR 3608/4-1). Last not least we would like to thank our families who allowed us to spend most of our weekends with organizing this conference, to William of Ockham for lending us his razor (from time to time) and to Max von Pettenkofer for guidance.
Background
Joint contractures are frequent conditions in individuals in geriatric care settings and are associated with activity limitations and participation restrictions. As such, relevant intervention programs should address these aspects, and the effectiveness of such programs should be determined by assessing improvement in activities and participation. However, no patient-centred and psychometrically sound outcome measures for this purpose are available so far.
Objectives
The objectives of this study were to develop and to validate a new outcome measure, the PaArticular Scales, to quantify activities and participation in older individuals with joint contractures. Specific aims were (A) to operationalize the content of an International Classification of Functioning, Disability and Health-based standard set towards meaningful questions and to combine them to a questionnaire and (B) to assess the psychometric properties of the developed questionnaire, in detail to evaluate test–retest reliability, objectivity, internal consistency reliability and criterion validity.
Design
Operationalization was reached by an expert consensus conference and a subsequent expert Delphi survey. Psychometric properties were assessed in a cross-sectional study.
Settings
Nursing homes, geriatric rehabilitation facilities.
Participants
23 experts (nurses, physicians, physical and occupational therapists) participated in the consensus conference and the Delphi survey. A total of 191 individuals with joint contractures (as confirmed by physician, nurse or physical therapist) between 65 and 102 years, living in nursing homes or as patients in geriatric rehabilitation were enrolled in the cross-sectional study.
Methods
Rasch Partial Credit Modelling.
Results
The consensus conference and Delphi survey resulted in a questionnaire with 86 items of the International Classification of Functioning, Disability and Health. Test–retest-reliability among those was acceptable (Cohen's weighted kappa: 0.779). The Rasch analysis revealed two independent interval-scaled scales with 24 items for the Activities scale and 11 items for the Participation scale with high internal consistency reliability. Cronbach's alpha was 0.96 for the Activities scale and 0.92 for the Participation scale. Criterion validity was −0.40 and −0.30 for the Activities scale and for the Participation scale, respectively.
Conclusions
The PaArticular Scales, a new patient-centred and psychometric sound outcome measures to comprehensively assess the impact of joint contractures in geriatric care, are available now. These developed scales will serve as primary outcomes in a scheduled evaluation of a complex intervention to improve participation and quality of life in nursing home residents with joint contractures.