Alarcos Cieza

World Health Organization WHO, Genève, Geneva, Switzerland

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Publications (334)776.39 Total impact

  • [Show abstract] [Hide abstract]
    ABSTRACT: To develop a comprehensive set of categories from the International Classification of Functioning, Disability and Health (ICF) as a minimal standard for reporting and assessing functioning and disability in clinical populations along the continuum of care. The specific aims were to specify the domains of functioning recommended for such ICF Rehabilitation Set and to identify a minimal set of environmental factors (EFs) to be used alongside the ICF Rehabilitation Sets when describing disability across individuals and populations with various health conditions.
    No preview · Article · Jan 2016 · Archives of physical medicine and rehabilitation
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    Renaldo Bernard · Alarcos Cieza
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    ABSTRACT: Despite all efforts by governments and other major stakeholders to ensure access to the Web by persons with disabilities, there are still some challenges to be addressed. The Web Accessibility Initiative (WAI) works to ensure the right to access to communications technology is preserved for persons with disabilities on the Web and has produced several international standards designed to improve the accessibility of content on the Web and applications involved in its design and use. The Web Content Accessibility Guidelines (WCAG) 2.0 is one of the WAI’s most successful standards and has even gained approval from the International Organization for Standardization. Moreover, many countries have seen merit in instituting compliance to the WCAG as a requirement for government and in some cases non-governmental websites as well. However, this contribution identifies some of the persisting challenges hampering access to the Web including a lack of Web skills and informed use among persons with disabilities, and adequate accommodation for them on the Web that should be addressed. Promising approaches adopted by the WAI and researchers in the field to improve access to the Web by persons with disabilities were critically reviewed to highlight good practice and areas for improvement. The WAI's consensus based guideline development process has great merit as well as the relatively prompt, responsive and evidence-based guidance provided by research-based approaches (e.g., Beyond ALT Text: Usability for Disabled Users’ guidelines). Nonetheless, efforts to encourage more participation by persons with disabilities during the guideline development process and more systematic Web accessibility related research are needed. This contribution directs governments to adopt the pragmatic framework of progressive realisation by assessing their current state of affairs and devising meaningful and feasible steps towards the goal of making the Web accessible for all. Developed strategies are to incorporate several key elements including efforts to: strengthen links between key stakeholders (e.g., government, Web accessibility professionals and researchers, and those with disabilities); ensure increased compliance to standards (e.g, WAI guidelines); fund research to accommodate a wider range of disabilities, such as those experienced by people with mental disorders; and to empower persons with disabilities.
    Full-text · Technical Report · Jan 2016
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    Jerome Bickenbach · Alarcos Cieza · Carla Sabariego

    Full-text · Article · Jan 2016 · International Journal of Environmental Research and Public Health
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    Preview · Article · Dec 2015 · International Journal of Environmental Research and Public Health
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    ABSTRACT: Background: Persons with brain disorders experience significant psychosocial difficulties (PSD) in daily life, e.g. problems with managing daily routine or emotional lability, and the level of the PSD depends on social, physical and political environments, and psychologic-personal determinants. Our objective is to determine a brief set of environmental and psychologic-personal factors that are shared determinants of PSD among persons with different brain disorders. Methods: Cross-sectional study, convenience sample of persons with either dementia, stroke, multiple sclerosis, epilepsy, migraine, depression, schizophrenia, substance dependence or Parkinson's disease. Random forest regression and classical linear regression were used in the analyses. Results: 722 subjects were interviewed in four European countries. The brief set of determinants encompasses presence of comorbidities, health status appraisal, stressful life events, personality changes, adaptation, self-esteem, self-worth, built environment, weather, and health problems in the family. Conclusions: The identified brief set of common determinants of PSD can be used to support the implementation of cross-cutting interventions, social actions and policy tools to lower PSD experienced by persons with brain disorders. This set complements a recently proposed reliable and valid direct metric of PSD for brain disorders called PARADISE24.
    Full-text · Article · Dec 2015 · PLoS ONE
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    ABSTRACT: Background: The prevalence of mental disorders such as depression, schizophrenia and substance dependency, and neurological disorders such as dementia, migraine and epilepsy – together called brain disorders – is extremely high. Recently, evidence for the hypothesis of horizontal epidemiology, namely that impairments of mental functions, activity limitations and participation restrictions, and their determinants, experienced by persons with brain disorders in daily life are common across brain disorders, was shown in the EC-funded project Psychosocial fActors Relevant to BrAin DISorders in Europe (PARADISE). Objectives: To construct a metric scale of the impact of brain disorders on people’s lives and to identify a brief set of environmental and personal factors that are their shared determinants. Methods: Data from a cross-sectional study with a convenience sample of 722 persons with 9 different brain disorders interviewed in four European countries was used. Questions addressing 64 functioning domains were first reduced based on statistical considerations, patient’s perspective and clinical expertise. Rasch analyses for polytomous data were applied to construct a metric scale of functioning. Random forest regression and classical linear regression were used to identify a brief set of determinants with the highest impact on this metric. Results: A valid and reliable metric with 24 functioning items was created and ranges from zero (best level of functioning) to 100 (worst level of functioning). The brief set of determinants encompasses presence of comorbidities, stressful life events, self-esteem, self-worth, built environment and weather besides others.
    Full-text · Conference Paper · Oct 2015
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    ABSTRACT: Objective: To test the hypothesis of 'horizontal epidemiology', i.e. that psychosocial difficulties (PSDs), such as sleep disturbances, emotional instability and difficulties in personal interactions, and their environmental determinants are experienced in common across neurological and psychiatric disorders, together called brain disorders. Study design: A multi-method study involving systematic literature reviews, content analysis of patient-reported outcomes and outcome instruments, clinical input and a qualitative study was carried out to generate a pool of PSD and environmental determinants relevant for nine different brain disorders, namely epilepsy, migraine, multiple sclerosis, Parkinson's disease, stroke, dementia, depression, schizophrenia and substance dependency. Information from these sources was harmonized and compiled, and after feedback from external experts, a data collection protocol including PSD and determinants common across these nine disorders was developed. This protocol was implemented as an interview in a cross-sectional study including a convenience sample of persons with one of the nine brain disorders. PSDs endorsed by at least 25% of patients with a brain disorder were considered associated with the disorder. PSD were considered common across disorders if associated to 5 out of the 9 brain disorders and if among the 5 both neurological and psychiatric conditions were represented. Setting: The data collection protocol with 64 PSDs and 20 determinants was used to collect data from a convenience sample of 722 persons in four specialized health care facilities in Europe. Results: 57 of the PSDs and 16 of the determinants included in the protocol were found to be experienced across brain disorders. Conclusion: This is the first evidence that supports the hypothesis of horizontal epidemiology in brain disorders. This result challenges the brain disorder-specific or vertical approach in which clinical and epidemiological research about psychosocial difficulties experienced in daily life is commonly carried in neurology and psychiatry and the way in which the corresponding health care delivery is practiced in many countries of the world.
    Full-text · Article · Sep 2015 · PLoS ONE
  • Pavel Ptyushkin · Alarcos Cieza · Gerold Stucki
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    ABSTRACT: Health conditions are associated with a variety of functional outcomes. Even though functional outcomes are diverse for different health conditions, they can have important commonalities. The aim of this study was to identify the most common problems in functioning across the wide range of health conditions using the International Classification of Functioning (ICF). Existing databases created for the 21 ICF Core Sets studies were descriptively analyzed. These included data collected in 44 countries on 9978 patients with one of 21 health conditions as the main diagnosis. A frequency cutoff of 50% was used to identify the most common problems in functioning when looking at single health conditions and across them. No category was identified as common to all health conditions included in the study. Fifteen most frequent categories were common in 10 to 13 health conditions out of 21. Eleven categories correspond to the list of activities and participation, and four to the list of body functions. These are related to mobility, daily routine, mental functions, intimate relations, employment, and leisure. Some health conditions have more commonalities between each other. The most common problems across health conditions are therefore related to mental functions, mobility, daily life, intimate relations, employment, and leisure. The results contribute toward the identification of the universal set of ICF categories that can be used in clinical practice for the general assessment of functioning.
    No preview · Article · Sep 2015 · International journal of rehabilitation research. Internationale Zeitschrift fur Rehabilitationsforschung. Revue internationale de recherches de readaptation
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    M. Avellanet · M. Selb · G. Stucki · A. Cieza

    Full-text · Article · Sep 2015
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    ABSTRACT: The usual approach in disability surveys is to screen persons with disability upfront and then ask questions about everyday problems. The objectives of this paper are to demonstrate the impact of screeners on disability rates, to challenge the usual exclusion of persons with mild and moderate disability from disability surveys and to demonstrate the advantage of using an a posteriori cut-off. Using data of a pilot study of the WHO Model Disability Survey (MDS) in Cambodia and the polytomous Rasch model, metric scales of disability were built. The conventional screener approach based on the short disability module of the Washington City Group and the a posteriori cut-off method described in the World Disability Report were compared regarding disability rates. The screener led to imprecise rates and classified persons with mild to moderate disability as non-disabled, although these respondents already experienced important problems in daily life. The a posteriori cut-off applied to the general population sample led to a more precise disability rate and allowed for a differentiation of the performance and needs of persons with mild, moderate and severe disability. This approach can be therefore considered as an inclusive approach suitable to monitor the Convention on the Rights of Persons with Disabilities.
    Full-text · Article · Aug 2015 · International Journal of Environmental Research and Public Health
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    ABSTRACT: Objectives: To describe physical activity (PA) levels in persons with spinal cord injury (SCI) and to investigate associated factors. Methods: PA behavior of people with SCI in Switzerland was assessed in a community survey with four items from the Physical Activity Scale for individuals with physical disabilities (PA of light, moderate, and strenuous intensity and muscle-strengthening exercises). In addition to descriptive analyses, the odds of performing PA according to the WHO recommendations (at least 2.5 h/week of at least moderate intensity) were analyzed by multivariable logistic regression. Results: Participants (n = 485; aged 52.9 ± 14.8; 73.6 % male) carried out PA a total of 6.0 h/week (median). 18.6 % were physically inactive, 50.3 % carried out musclestrengthening exercises, and 48.9 % fulfilled the WHO recommendations. Regression analyses showed that women, people aged 71+, and people with complete tetraplegia had significantly lower odds of fulfilling the WHO recommendations than participants in the respective reference category (men, ages 17–30, incomplete paraplegia). Conclusions: PA levels of people with SCI in Switzerland are rather high. However, some subgroups need special consideration when planning interventions to increase PA levels.
    No preview · Article · Aug 2015 · International Journal of Public Health
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    ABSTRACT: The objective of this study is to determine whether persons with neuropsychiatric disorders experience a common set of psychosocial difficulties using qualitative data from focus groups and individual interviews. The study was performed in five European countries (Finland, Italy, Germany, Poland and Spain) using the focus groups and individual interviews with persons with nine neuropsychiatric disorders (dementia, depression, epilepsy, migraine, multiple sclerosis, Parkinson's disease, schizophrenia, stroke and substance dependence). Digitally recorded sessions were analysed using a step-by-step qualitative and quantitative methodology resulting in the compilation of a common set of psychosocial difficulties using the International Classification of Functioning, Disability and Health (ICF) as a framework. Sixty-seven persons participated in the study. Most persons with neuropsychiatric disorders experience difficulties in emotional functions, sleeping, carrying out daily routine, working and interpersonal relationships in common. Sixteen out of 33 psychosocial difficulties made up the common set. This set includes mental functions, pain and issues addressing activities and participation and provides first evidence for the hypothesis of horizontal epidemiology of psychosocial difficulties in neuropsychiatric disorders. This study provides information about psychosocial difficulties that should be covered in the treatment and rehabilitation of persons with neuropsychiatric disorders regardless of clinical diagnoses. Implications for Rehabilitation Emotional problems, work and sleep problems should be addressed in all the treatments of neuropsychiatric disorders regardless of their specific diagnosis, etiology and severity. Personality issues should be targeted in the treatment for neurological disorders, whereas communication skill training may also be useful for mental disorders. The effects of medication and social environment on patient's daily life should be considered in all the neuropsychiatric conditions.
    No preview · Article · Aug 2015 · Disability and Rehabilitation
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    ABSTRACT: The paper outlines a methodology proposed to give impetus to a collaborative effort involving integral stakeholders to determine whether Web accessibility facilitation measures must be adapted for people with depression and anxiety, and if so, in what way(s). The methodology has three-phases: (1) identification of Web accessibility barriers using two data sources: a systematic review of pertinent literature and focus group interviews with people with depression and anxiety; (2) validation of current Web accessibility facilitation measures for this population using experimental user-testing; (3) provision of expertise-based recommendations for the improvement of Web accessibility facilitation measures using a delphi method. If adopted, the study’s findings are expected to herald improvements in the Web browsing experiences of people with depression and anxiety, and also everyone else who use the Web.
    Full-text · Conference Paper · Aug 2015
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    Conal Twomey · David Baldwin · Maren Hopfe · Alarcos Cieza
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    ABSTRACT: To identify variables that predict health service utilisation (HSU) by adults with mental disorders in the UK, and to determine the evidence level for these predictors. A narrative synthesis of peer-reviewed studies published after the year 2000. The search was conducted using four databases (ie, PsycINFO, CINAHL Plus with full text, MEDLINE and EMBASE) and completed on 25 March 2014. The majority of included studies were set in health services across primary, secondary, specialist and inpatient care. Some studies used data from household and postal surveys. Included were UK-based studies that predicted HSU by adults with mental disorders. Participants had a range of mental disorders including psychotic disorders, personality disorders, depression, anxiety disorders, eating disorders and dementia. A wide range of HSU outcomes were examined, including general practitioner (GP) contacts, medication usage, psychiatrist contacts, psychotherapy attendances, inpatient days, accident and emergency admissions and 'total HSU'. Taking into account study quality, 28 studies identified a range of variables with good preliminary evidence supporting their ability to predict HSU. Of these variables, comorbidity, personality disorder, age (heterogeneous age ranges), neurotic symptoms, female gender, a marital status of divorced, separated or widowed, non-white ethnicity, high previous HSU and activities of daily living, were associated with increased HSU. Moreover, good preliminary evidence was found for associations of accessing a primary care psychological treatment service and medication use with decreased HSU. The findings can inform decisions about which variables might be used to derive mental health clusters in 'payment by results' systems in the UK. The findings also support the need to investigate whether combining broad diagnoses with care pathways is an effective method for mental health clustering, and the need for research to further examine the association between mental health clusters and HSU. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.
    Full-text · Article · Jul 2015 · BMJ Open
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    ABSTRACT: To construct a metric of the impact of brain disorders on people's lives, based on the psychosocial difficulties (PSDs) that are experienced in common across brain disorders. Psychometric study using data from a cross-sectional study with a convenience sample of 722 persons with 9 different brain disorders interviewed in four European countries: Italy, Poland, Spain and Finland. Questions addressing 64 PSDs were first reduced based on statistical considerations, patient's perspective and clinical expertise. Rasch analyses for polytomous data were also applied. In and outpatient settings. A valid and reliable metric with 24 items was created. The infit of all questions ranged between 0.7 and 1.3. There were no disordered thresholds. The targeting between item thresholds and persons' abilities was good and the person-separation index was 0.92. Persons' abilities were linearly transformed into a more intuitive scale ranging from zero (no PSDs) to 100 (extreme PSDs). The metric, called PARADISE 24, is based on the hypothesis of horizontal epidemiology, which affirms that people with brain disorders commonly experience PSDs. This metric is a useful tool to carry out cardinal comparisons over time of the magnitude of the psychosocial impact of brain disorders and between persons and groups in clinical practice and research.
    Full-text · Article · Jul 2015 · PLoS ONE
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    Full-text · Dataset · Jul 2015
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    Full-text · Dataset · Jul 2015
  • J.A.F. López · M.F. Fidalgo · A. Cieza
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    ABSTRACT: The World Health Organization's International Classification of Functioning, Disability and Health (ICF) has provided a new foundation for our understanding of health, functioning, and disability. As a content-valid, comprehensive and universally applicable health classification for the 21st century, it serves as a platform to clarify and specify health-related concepts that are frequently used in the medical literature, and to describe the process of addressing the question of what to measure in studies in which the main focus is a comprehensive understanding of functioning over time, and how its components interact or affect each other.
    No preview · Article · Jun 2015
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    ABSTRACT: Background Lived health and biological health are two different perspectives of health introduced by the International Classification of Functioning, Disability and Health (ICF). Since in the concept of lived health the impact of the environment on biological health is inherently included, it seems intuitive that when identifying the environmental determinants of health, lived health is the appropriate outcome. The Multilevel Item Response Theory (MLIRT) model has proven to be a successful method when dealing with the relation between a latent variable and observed variables. The objective of this study was to identify environmental factors associated with lived health when controlling for biological health by using the MLIRT framework. Methods We performed a psychometric study using cross-sectional data from the Spanish Survey on Disability, Independence and Dependency Situation. Data were collected from 17,303 adults living in 15,263 dwellings. The MLIRT model was used for each of the two steps of the analysis to: (1) calculate people’s biological health abilities and (2) estimate the association between lived health and environmental factors when controlling for biological health. The hierarchical structure of individuals in dwellings was considered in both models. Results Social support, being able to maintain one’s job, the extent to which one’s health needs are addressed and being discriminated against due to one’s health problems were the environmental factors identified as associated with lived health. Biological health also had a strong positive association with lived health. Conclusions This study identified environmental factors associated with people’s lived health differences within and between dwellings according to the MLIRT-model approach. This study paves the way for the future implementation of the MLIRT model when analysing ICF-based data.
    Full-text · Article · May 2015 · BMC Public Health
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    ABSTRACT: The aim of this article is to compare the content of patient-reported outcome (PRO) burnout measures and to examine the degree of overlap between them and psychosocial difficulties (PSD) experienced by persons with burnout. The most frequently used PRO and qualitative studies were identified in two systematic literature reviews. Psychosocial difficulties identified in both sources were standardized and a qualitative content comparison was performed. Seven PROs and seven qualitative studies were selected. Energy and drive, emotional functions and work were key themes of both sources. Disparities were observed for problems in areas such as sleep, attention or family relationships, which were reported in several qualitative studies, but are seldom addressed in PROs. Several areas important to persons with burnout, such as family relationships, are seldom measured by currently used PROs. From a biopsychosocial perspective, these instruments cannot therefore be considered comprehensive enough to capture the whole experience of burnout and should be improved.
    No preview · Article · May 2015 · European Journal of Psychological Assessment

Publication Stats

9k Citations
776.39 Total Impact Points

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Institutions

  • 2014-2015
    • World Health Organization WHO
      Genève, Geneva, Switzerland
  • 2012-2015
    • University of Southampton
      • • Department of Psychology
      • • Faculty of Social and Human Sciences
      Southampton, England, United Kingdom
  • 2003-2015
    • Ludwig-Maximilians-University of Munich
      • • Department of Medical Informatics
      • • Department of Physical Medicine and Rehabilitation
      • • Institute of Medical Psychology (IMP)
      München, Bavaria, Germany
  • 2007-2014
    • Swiss Paraplegic Research Group
      Nottwil, Lucerne, Switzerland
  • 2013
    • Universität Luzern
      Luzern, Lucerne, Switzerland
  • 2004-2013
    • Technische Universität München
      München, Bavaria, Germany
  • 2008-2010
    • INTERNATIONAL HEALTH, RACQUET & SPORTSCLUB ASSOCIATION
      Boston, Massachusetts, United States
  • 2004-2010
    • German Institute Of Medical Documentation And Information
      Köln, North Rhine-Westphalia, Germany