Jerome Bickenbach's research while affiliated with Universität Luzern and other places
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Publications (196)
Background
Data on functioning and disability collected at population level is essential to complement mortality and morbidity, to estimate rehabilitation needs of countries and regions and to monitor the Convention on the Rights of Persons with Disabilities (CRPD) and the Sustainable Development Goals (SDGs). The objective of this paper is to brie...
The ATHLOS cohort is composed of several harmonized datasets of international groups related to health and aging. As a result, the Healthy Aging index has been constructed based on a selection of variables from 16 individual studies. In this paper, we consider additional variables found in ATHLOS and investigate their utilization for predicting the...
Background
The Model Disability Survey (MDS) is the current standard recommended by WHO to collect functioning and disability data. Answering calls from countries requesting a version to be implemented as a module that could be integrated into existing surveys and be used for monitoring disability trends and for data disaggregation, WHO developed t...
Because of important health and population trends, rehabilitation is a key health strategy of the 21st century, and efforts are being made towards a broader integration of rehabilitation into health systems worldwide. In the scope of the call for action Rehabilitation 2030, WHO recommends a logic model approach for monitoring and evaluating nationa...
Rehabilitation is a health strategy with the potential to mitigate the negative health consequences of population ageing and the rise of noncommunicable diseases. Literature indicates that even in high-income countries rehabilitation services can be improved. The purpose of this study is to engage rehabilitation professionals in Switzerland in iden...
Investment in action is vital to confront the challenges associated with chronic diseases and disability facing European health systems. Although relevant policy responses are being increasingly developed, most of them fail to recognize the role of rehabilitation services in achieving public health and social goals. Comprehensive guidance is thus u...
Preventive healthcare is a crucial pillar of health as it contributes to staying healthy and having immediate treatment when needed. Mining knowledge from longitudinal studies has the potential to significantly contribute to the improvement of preventive healthcare. Unfortunately, data originated from such studies are characterized by high complexi...
Recent technological advancements in various domains, such as the biomedical and health, offer
a plethora of big data for analysis. Part of this data pool is the experimental studies that record
various and several features for each instance. It creates datasets having very high dimensionality
with mixed data types, with both numerical and categori...
Objective
To identify classes of functioning trajectories in persons with spinal cord injury (SCI) undergoing initial rehabilitation following injury, and to examine potential predictors of class membership in order to inform clinical planning of the rehabilitation process.
Design
Longitudinal analysis of the subject' rehabilitation stay using dat...
The ATHLOS cohort is composed of several harmonized datasets of international cohorts related to health and aging. The healthy aging scale has been constructed based on a selection of particular variables from 16 individual studies. In this paper, we consider a selection of additional variables found in ATHLOS and investigate their utilization for...
Preventive healthcare is a crucial pillar of health as it contributes to staying healthy and having immediate treatment when needed. Mining knowledge from longitudinal studies has the potential to significantly contribute to the improvement of preventive healthcare. Unfortunately, data originated from such studies are characterized by high complexi...
This chapter discusses ethical dimensions of health research and innovation development and implementation. Ethics, or moral philosophy, is the investigation of principles and normative standards that guide people in making practical decisions and carrying out morally acceptable actions, all things considered. We argue that ethical considerations a...
Background: Research efforts to measure the concept of healthy ageing have been diverse and limited to specific populations. This diversity limits the potential to compare
healthy ageing across countries and/or populations. In this study, we developed a novel
measurement scale of healthy ageing using worldwide cohorts.
Methods: In the Ageing Trajec...
Recent research and the actions of the World Health Organization (WHO) have clarified the nature and value of rehabilitation as a key health strategy of the 21st century. However, strengthening rehabilitation in national health systems around the world is a challenge, partly because there is not an evidence-based argument that rehabilitation is a g...
As a community survey of people living with spinal cord injury in 22 countries, representing all six of WHO regions of the world, InSCI is one of a very few surveys that highlights, not only the basic medical issues, but also the impact of SCI on the everyday lives of people. As well, the InSCI survey is part of a much larger project called the Lea...
![Figure 1. Document identification and selection flowchart [25].](profile/Dimitrios-Skempes/publication/342261584/figure/fig1/AS:903715980574722@1592474088837/Document-identification-and-selection-flowchart-25_Q320.jpg)
Background:
The rising prevalence of disability due to noncommunicable diseases and the aging process in tandem with under-prioritization and underdevelopment of rehabilitation services remains a significant concern for European public health. Over recent years, health system responses to population health needs, including rehabilitation needs, ha...
We investigated the relation between alcohol drinking and healthy ageing by means of a validated health status metric, using individual data from the Ageing Trajectories of Health: Longitudinal Opportunities and Synergies (ATHLOS) project. For the purposes of this study, the ATHLOS harmonised dataset, which includes information from individuals age...
Forming part of a larger project on how disabled people exercise active citizenship in nine European countries, this study examined factors that enhance or hamper disabled peoples’ opportunities to participate fully and on equal terms with others in the domain of work. Twenty-six, gender-balanced life course interviews with persons living in Switze...
Objective
To analyze and compare how performance indicators of the health system are linked to the self-reported quality of life (QoL) of people with spinal cord injury (SCI) in 22 countries participating in the International Spinal Cord (InSCI) community survey.
Design
Cross-sectional survey.
Setting
22 countries representing all six WHO regions...
Background:
Pain is a common symptom, often associated with neurological and musculoskeletal conditions, and experienced especially by females and by older people. The aims of this study are to evaluate the temporal variations of pain rates among general populations for the period 1991-2015 and to project 10-year pain rates.
Methods:
We used the...
Background:
Pain is a common symptom, often associated with neurological and musculoskeletal conditions, and experienced especially by females and by older people, and with increasing trends in general populations. Different risk factors for pain have been identified, but generally from studies with limited samples and a limited number of candidat...
Although we are currently overwhelmed by the astonishing speed of infection of the Covid-19 pandemic, and the daily onslaught of new, and ever-worsening predictions, it is vital that we begin to prepare for the aftershocks of the pandemic. Prominent among this will be the cohort of post-intensive case survivors who have been mechanically ventilated...
An amendment to this paper has been published and can be accessed via a link at the top of the paper.
Cross-sectional.
To examine the associations between activities, body structures and functions, and their relationship with aetiology, age and sex in persons with spinal cord injury (SCI) at discharge from first rehabilitation.
Swiss SCI Cohort Study (SwiSCI).
The study included 390 participants with newly acquired SCI and the International Classif...
Making one's own choices is an important part of leading a fulfilling life within society. However, people with IDs often face significant obstacles when making their own decisions. Article 12 (Equal recognition before the law) of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) aims to ensure firstly that people with...
Interest has been accelerating in the promotion of interdisciplinary research to ensure an integrative approach to health science. Perhaps no other area of health research more obviously benefits from interdisciplinary research than rehabilitation. Besides biomedical and clinical practice-oriented research, interdisciplinary research is needed for...
The Ageing Trajectories of Health – Longitudinal Opportunities and Synergies (ATHLOS) cohort harmonizes existing longitudinal data from 17 international cohort studies.
It aims to achieve a better understanding of the impact of ageing on health and to propose timely clinical and public health interventions to optimize and promote healthy ageing....
As a society we invest an enormous amount of resources in health because we are convinced that health is linked in some way to a person's well-being, and that population health is linked to overall societal welfare. But the nature of this link, and the evidence for it, are more controversial. After exploring current attempts to operationalize well-...
Purpose: To evaluate the access to human rights of persons with disabilities who use prosthetic and orthotic assistive devices, and to compare groups of participants in terms of gender, residential area, income, and type and level of assistive device. The addressed areas were rights to: health, a standard of living adequate for health, education, m...
The purpose of article 26 is to reaffirm the relevance of rehabilitation as a means for the full enjoyment of the right to the highest attainable standard of physical and mental health, the right to employment, the right to education, and the right to independent living of persons with disability and to highlight its significance for the promotion...
Purpose: To demonstrate the value of the International Classification of Functioning, Disability and Health (ICF) notion of functioning as an operationalisation of health so as to describe, measure, and explain the lived experience of health, which is what matters to people about their health.
Methods: Conceptual analysis based on evidence on the n...
Background:
Rehabilitation is crucial for the realization of the right to health and a proper concern of global health. Yet, reliable information to guide rehabilitation service planning is unavailable in many countries in part due to the lack of appropriate indicators. To ensure universal health coverage and meet the central imperative of "leavin...
Functioning information constitutes a relevant component for determining patients’ service needs and respective resource use. Diagnosis-Related Group (DRG) systems can be optimized by integrating functioning information. First steps toward accounting for functioning information in the German DRG (G-DRG) system have been made; yet, there is no syste...
The health system in Switzerland is considered as one of the best in the world. Nevertheless, to effectively and efficiently meet current and future challenges, an infrastructure and culture are needed where the best evidence is systematically made available and used, and the system evolves on the basis of a constant exchange between research, poli...
Objective:
To describe functioning in people living with spinal cord injury (SCI) in Switzerland.
Design:
Secondary analysis of cross-sectional survey data.
Setting:
Community, Switzerland.
Participants:
Individuals (N=1549) who were 16 years or older with a history of traumatic or non-traumatic SCI and have a permanent residence in Switzerl...
Aim: The World Health Organization (WHO) publishes a large number of health reports every year, containing recommendations to overcome societal and system barrier challenges toward targeting unmet health needs. One such report, the International Perspectives on Spinal Cord Injury (IPSCI), specifically describes the situation of persons with spinal...
No Abstract (Guest Editorial)
Disability as a health outcome deserves more attention than it has so far received. With people living longer and the epidemiological transition from infectious to noncommunicable diseases as the major cause of health burden, we need to focus attention on disability – the non-fatal impact of heath conditions – over and above our concern for causes...
Background: Access to rehabilitation is crucial for the realization of the right to health and a proper concern of global health. Yet, reliable information to guide rehabilitation service planning is unavailable in many countries in part due to the lack of appropriate indicators. To ensure universal health coverage and meet the central imperative o...
This is supplementary material to the preprint by Skempes, D.; Melvin, J.; Von Groote, P..; Stucki, G.; Bickenbach, J. Using Concept Mapping to Develop a Human Rights Based Indicator Framework to Assess Country Efforts to Strengthen Rehabilitation Provision and Policy: The Rehabilitation System Diagnosis and Dialogue (RESYST) Framework. Preprints 2...
Rehabilitation aims to optimize people's lived experience of health or functioning. A comprehensive understanding of people's functioning is thus fundamental for rehabilitation clinicians and scientists. Over the past ten years it has been shown that graphical modelling is a promising technique for modelling data on people's functioning. It can con...
The aim of this essay is to show the impact that driving forces have had on the emergence of rehabilitation as a health strategy in the USA. Specifically, this essay 1) identifies the driving forces that have addressed the development of rehabilitation, 2) examines how the rehabilitative strategy has been driven by the driving forces through turnin...
Objectives
The objective of this study was to identify which environmental factors are the most responsible for the disability experienced by persons with mental disorders and whether they differ (1) from those in cardiovascular diseases, chronic respiratory conditions, diabetes, and cancer, and (2) depending on the capacity level-a proxy for the i...
Assistive technology has great potential to contribute to health, functioning and quality of life. To date, as exemplified in the Canadian context, variations and inequities in access to assistive technology are evident; the development of legislation, policies and programs has not kept up with the increasing use of assistive technology. In this pa...
Aim: This paper aims to evaluate a strategy for the implementation of public health policy recommendations from the World Health Organization’s (WHO) report “International Perspectives on Spinal Cord Injury” in Romania. More specifically, it seeks to: a) evaluate implementation actions with a focus on a number of people reached and status of comple...
An essential part of the ATHLOS project is the translation of the ATHLOS findings, integrated with outcomes of previous research, into prevention and intervention measures. This work stream includes: (i) alternative scenario analysis and microsimulations to examine the economic and social consequences of policy decisions and to identify population-...
Although there is an overwhelming evidence of a rapidly increasing proportion of older people across the world, people age differently. The ATHLOS (Ageing Trajectories of Health: Longitudinal Opportunities and Synergies) project is a consortium of 15 partners across Europe who are working together to understand patterns of healthy ageing trajectori...
Disability has a profound impact, both on those who live with it and on society
that responds to the needs of people experiencing disability. Society
has a primary obligation to respond to the impact of disability.
Rehabilitation has an essential role to play here; but its
relationship to disability embodies a broader social ambiguity about
what it...
Background: Current health systems are increasingly challenged to meet the needs of a growing number of patients living with chronic and often multiple health conditions. The primary outcome of care, it is argued, is not merely curing disease but also optimizing functioning over a person’s life span. According to the World Health Organization, func...
Respect for individual autonomy is at the core of the Convention on the Rights of Persons with Disabilities (CRPD). However, the need to protect persons with disabilities, especially those with cognitive impairments and psychosocial conditions, from outright exploitation, violence and abuse is explicitly provided for in article 16. Legal authoritie...
Objective:
One of the aims of the World Health Organization's Global Disability Action Plan is to strengthen rehabilitation services. Some countries have requested support to develop (scale-up) rehabilitation services. This paper describes the measures required and how (advisory) missions can support this purpose, with the aim of developing Nation...
The paper introduces the special issue by linking the International Spinal Cord Injury (InSCI) Community Survey study to the Learning Health System for SCI Initiative (LHS-SCI). The LHS-SCI was designed to respond to the implementation challenge of bringing about policy reform in light of the targeted policy recommendations of World Health Organiza...
The International Spinal Cord Injury (InSCI) community survey has been developed to collect internationally comparable data on the lived experience of persons with spinal cord injury (SCI) in all 6 WHO regions. The InSCI survey provides a crucial first step to generate evidence on functioning, health maintenance, and subjective well-being in person...
There is strong evidence that population ageing and the epidemiological transition to a higher incidence of chronic, non-communicable diseases will continue to profoundly impact societies worldwide, putting more pressure on healthcare systems to respond to the needs of the people they serve. These trends argue for the need to address what matters t...
In this methodological note on applying the ICF in rehabilitation, we introduce functioning information as fundamental for the 'learning health system' and the continuous improvement of the health system's response to people's functioning needs by means of the provision of rehabilitation. A learning health system for rehabilitation operates at the...
Background:
The application of the International Classification of Functioning, Disability and Health (ICF) in rehabilitation requires suitable tools that allow us to document comprehensively and systematically the lived experience of health to guide clinical practice, the management of services, evidence-informed policy and scientific inquiry.
O...
In this methodological note on applying the ICF in rehabilitation, we introduce functioning as the third health indicator complementing the established indicators mortality and morbidity. Together, these three provide a complete set of indicators for monitoring the performance of health strategies in health systems. When applying functioning as the...
The notorious World Health Organization definition of health as “a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity” has been roundly, and justifiably, criticized by philosophers more or less since it first appeared in 1948. Despite its obvious conceptual, and practical, limitations, it lau...
A complete understanding of the experience of health requires information relevant not merely to the health indicators of mortality and morbidity but also to functioning-that is, information about what it means to live in a health state, "the lived experience of health." Not only is functioning information relevant to healthcare and the overall obj...
The poster presents the current work on the Paper Series on the ICF Linking Rules and their various fields of application to be published in Disability and Rehabilitation.
The poster presents the refined ICF Linking Rules to be applied in ICF INFO to ensure qualitative comparability of information retrieved from various instruments. In applying the ICF Linking Rules the principles of harmonizing routinely collected health information based on the ICF will be established.
The poster presents the current work on the Paper Series on the ICF Linking Rules and their various fields of application to be published in Disability and Rehabilitation.
Objective: The aim of health sciences is to maintain and improve the health of individuals and populations and to limit disability. Health research has expanded astoundingly over the last century and a variety of scientific disciplines rooted in very different scientific and intellectual traditions has contributed to these goals. To allow health sc...
Despite the standards set out by the United Nations Convention on the Rights of Persons with Disabilities (CRPD), states are reluctant to put an end to substitute decision-making regimes all at once. Persons with mental health problems are particularly affected by such regimes that are instituted by independent authorities through legal capacity pr...
Several state parties to the United Nations Convention on the Rights of Persons with Disabilities (CRPD) undertook recent revisions of their national legal capacity laws. These revisions aim to promote the autonomy of persons with disabilities as set forward by the CRPD. At the same time, the CRPD Committee calls for the abolishment of all forms of...
Conclusion:
The ICF Linking Rules are valuable for enhancing comparability of health information to ensure that information is available in a consistent manner to serve as a foundation for evidence-based decision-making across all levels of health systems. The refinements presented in this paper enhance transparency in, and ultimately reliability...
is missing (Guest editorial).