Podcasts about health icf

Validating the International Classification of Functioning, Disability and Health Core Sets for Autism in a Sample of Australian School-Aged Children on the Spectrum.Assessing functioning of children on the autism spectrum is necessary to determine the level of support they require to participate in everyday activities across contexts. The International Classification of Functioning, Disability and Health (ICF) is a comprehensive biopsychosocial framework recommended for classifying health-related functioning in a holistic manner, across the components of body functions, activities and participation, and environmental factors. The ICF Core Sets (ICF-CSs) are sub-sets of relevant codes from the broader framework that provide a basis for developing condition-specific measures. This study combined the ICF-CSs for autism, attention deficit hyperactivity disorder (ADHD) and cerebral palsy (CP) to validate the ICF-CSs for autism in an Australian sample of school-aged children. This cross-sectional study involved caregivers of school-aged children on the spectrum (n = 70) completing an online survey and being visited in their homes by an occupational therapist to complete the proxy-report measure based on the ICF-CSs for autism, ADHD and CP. Absolute and relative frequencies of ratings for each of the codes included in the measure were calculated and reported, along with the number of participants who required clarification to understand the terminology used. Findings indicate that the body functions and activities and participation represented in the ICF-CSs for autism were the most applicable for the sample. However, findings relating to environmental factors were less conclusive. Some codes not currently included in the ICF-CSs for autism may warrant further investigation, and the language used in measures based on the ICF-CSs should be revised to ensure clarity.https://pubmed.ncbi.nlm.nih.gov/38400895/

What if there was a tool that could transform the way we deliver healthcare? That's the question we explore with Dr. Harry Feliciano and Rhonda Oaks in this riveting discussion about the International Classification of Functioning, Disability and Health (ICF). Dr. Feliciano, a seasoned geriatrician and former senior medical director, brings a rich history of experience in public health and preventive medicine to the table. He shares invaluable insights from his time on the front line of healthcare, as well as his personal journey as a family caregiver. On the other hand, Rhonda, a certified hospice and palliative care nurse, divulges her expertise on classification systems in healthcare. She illustrates how the ICF can be instrumental in stratifying dementia patients, tracking health outcomes, and considering the impact of social determinants and family care on a patient's prognosis. We also venture into some forward-thinking ideas about the integration of artificial intelligence and digital media with the ICF to capture classes of information. Listen in, it's not every day you get to peek into the future of healthcare delivery.Guest:Dr Harry FelicianoFormer Senior Medical Director for Palmetto GBA Rhonda OakesCertified Hospice and Palliative Nurse serving as Community Clinical Liaison at Four Seasons Host:Chris Comeaux, President / CEO of TCNTeleios Collaborative Network / https://www.teleioscn.org/tcntalkspodcast

What happens when identical twins born in Vietnam are separated by adoption, with one adopted by a US family and one adopted by a Vietnamese family? Join us to talk with Erika Hayasaki, a journalist and author of Somewhere Sisters: A Story of Adoption, Identity and the Meaning of Family.In this episode, we cover:The story.Twin studies.Adoption studies.The similarities of the twins in your story and in twin studies.The differences between the twins in your story and in twin studies.ReunitingHow did the twins' reunion affect them, their family in Vietnam, and their adopted family in the US?Complications that the disparate degrees of wealth caused.Adoptive parents' role in reunion.Twin studies referenced:Polderman, T., Benyamin, B., de Leeuw, C. et al. Meta-analysis of the heritability of human traits based on fifty years of twin studies. Nat Genet 47, 702–709 (2015). https://doi.org/10.1038/ng.3285Website based on the research cited above: MaTCH. This website provides a resource for the heritability of all human traits that have been investigated with the classical twin design. The traits have been classified into 28 broad trait domains, as well as according to the standard classification schemes of the International Classification of Functioning, Disability, and Health (ICF) or the International Classification of Diseases and Related Health Problems (ICD-10). Currently, the database includes information from 2748 papers, published between 1958 and 2012, reporting on 17804 traits on a total of 14,558,903 twin pairs. https://match.ctglab.nl/#/homeThis podcast is produced  by www.CreatingaFamily.org. We are a national non-profit with the mission to strengthen and inspire adoptive, foster & kinship parents and the professionals who support them. Creating a Family brings you the following trauma-informed, expert-based content:Weekly podcastsWeekly articles/blog postsResource pages on all aspects of family buildingPlease leave us a rating or review RateThisPodcast.com/creatingafamilySupport the showPlease leave us a rating or review RateThisPodcast.com/creatingafamily

Approximately one-quarter of Americans have disabilities. How can primary care pediatricians better support the health and goals of patients with disabilities? Danielle Barber, MD, PhD, attending physician, Division of Neurology, Children's Hospital of Philadelphia, discusses: the World Health Organization's International Classification of Functioning, Disability and Health (ICF); making care decisions based on the child's wishes and goals, such as swimming; fostering the growth of a disability identity; presumptions in diagnosing everyday ailments in patients with disability; how community integration and the ability to function affect quality of life and perceived good health; changes in the office setting to improve the patient experience; suggestions for resources and “first steps”; and more. This podcast is for general informational and educational purposes only and is not to be considered as medical advice for any particular patient. Clinicians must rely on their own informed clinical judgment in making recommendations to their patients. ©2023 by Children's Hospital of Philadelphia, all rights reserved.

PT, PTA, OT, OTA, SLP, Audiology – this podcast may help you meet your continuing education requirements. Access Relias Academy to review course certificate information.   An estimated 80% of health outcomes are based on social determinants of health (SDOH) and 20% on actual healthcare received. What can you do to better address SDOH with your patients? In this episode, we talk with Aimee Perron, a physical therapist, patient advocate, and national presenter, about what SDOH are, their impact on health and well-being, how to identify concerns, and ways to address them. (02:16) Key Takeaways From Today's Discussion (02:53) What Are Social Determinants of Health? (04:49) Five Key Domains (06:21) Shifting Focus from a Medical to Social Model (11:56) Case Example: Mariana (15:04) Health Literacy and Screens for SDOH (23:10) Patient Activation vs. Patient Engagement (25:09) Words Matter: How to Be Deliberate and Respectful (29:48) Mariana's Story Continued (35:34) Food Insecurity: What It Is and How to Help (43:27) Neighbors Helping Neighbors: A Case Example (45:14) The Impact of Social Connections (46:26) How to Be Successful and Efficient (48:05) Conclusion  The content for this course was created by Aimee E. Perron, PT, DPT. The content for this course was created by Wendy Phillips, PT, BSPT. Here is how Relias can help you earn continuing education credits:  Access your Relias Library offered by your employer to see course certificate information and exam;   or   Access the continuing education library for clinicians at Relias Academy. Review the course certificate information, and if eligible, you can purchase the course to access the course exam and receive your certificate.  Learn more about Relias at www.relias.com.    Legal Disclaimer: The content of Stretch: Relias Rehab Therapy Education is provided only for educational and training purposes for healthcare professionals. The educational material provided in this podcast should not be used as medical advice to treat any medical condition in either yourself or others.  Resources  Screening Resources AHRQ Health Literacy Universal Precautions Toolkit: AHRQ Health Literacy Universal Precautions Toolkit | Agency for Healthcare Research and Quality AAFP Social Needs Screening Tool (long version): Social Needs Screening Tool (Physician Long Version) (aafp.org) CMS Accountable Health Communities Health-Related Social Needs Screening Tool: The AHC Health-Related Social Needs Screening Tool (cms.gov) Patient Activation Measure®: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1361231/table/tbl1/ The Health Leads Screening Toolkit: https://healthleadsusa.org/resources/the-health-leads-screening-toolkit/ Food Security Feeding America: https://www.feedingamerica.org/hunger-in-america S. Household Food Security Survey Module: 6-Item Short Form: https://www.ers.usda.gov/media/8282/short2012.pdf Walkability AARP Livability Index: https://livabilityindex.aarp.org/ AARP Livable Communities (including Walk Audit Toolkit): https://www.aarp.org/livable-communities/getting-around/ EPA National Walkability Index User Guide: https://www.epa.gov/smartgrowth/national-walkability-index-user-guide-and-methodology SDOH Information Healthy People 2030 Social Determinants of Health Literature Summaries: https://health.gov/healthypeople/priority-areas/social-determinants-health/literature-summaries The International Classification of Functioning, Disability, and Health (ICF): https://www.cdc.gov/nchs/data/icd/icfoverview_finalforwho10sept.pdf World Health Organization: SDOH: https://www.who.int/health-topics/social-determinants-of-health#tab=tab_1 Resources Assistance AAFP Neighborhood Navigator: https://www.aafp.org/family-physician/patient-care/the-everyone-project/neighborhood-navigator.html FindHelp.org Website: https://www.findhelp.org/?ref=ab_redirect The Blue Zone Study Live Better, longer: Blue Zones—Live Better, Longer

Mental wellbeing in non-ambulant youth with neuromuscular disorders: What makes the difference?Vivienne Travlos , Jenny Downs , Andrew Wilson , Dana Hince , Shane Patman PMID: 30606465DOI: 10.1016/j.nmd.2018.08.013AbstractThe physical and social challenges associated with neuromuscular disorders may impact mental wellbeing in non-ambulant youth during the more vulnerable period of adolescence. This cross-sectional survey investigated non-ambulant youths' mental wellbeing and relationships with physical health, participation and social factors. The conceptual model was the International Classification of Functioning, Disability and Health (ICF). Thirty-seven youth aged 13-22 years old (mean age 17.4 years; n = 30 male; n = 24 Duchenne Muscular Dystrophy) and their parents provided biopsychosocial data through a comprehensive self-report questionnaire. The primary outcome measure was the Warwick Edinburgh Mental Wellbeing Scale (WEMWBS). Relationships between mental wellbeing and variables within and across each ICF domain were explored using linear regression models. Mean WEMWBS scores (55.3/70 [SD 8.1]) were higher than for typically developing youth and comparable to youth with other chronic conditions. Over half of youth reported severe co-morbidities across all body systems. Multivariable modelling indicated that mental wellbeing was independently associated with academic achievement and perceived family support but not with physical health variables. Beyond management of physical co-morbidities, enabling youths' educational attainment and attending to social support likely optimises youth's wellbeing.

Ronda Winans-Mitrik, MA, CCC-SLP, has been a Speech-Language Pathologist since 2009. She began her career at the VA Pittsburgh Healthcare System (VAPHS) by providing intensive, evidence-based aphasia treatment to veterans and active duty service members from across the United States through the Program for Intensive Aphasia Treatment & Education (PIRATE). Since that time, she has provided countless hours of aphasia assessment and intervention services to patients with a wide range of aphasia severities. During her time with PIRATE, she developed the clinical processes for in-person and remote candidacy evaluations and follow-up using tele-practice technology. She is a recipient of the 2012 Association of Veteran Affairs Speech Language Pathologists (AVASLP) Outstanding Achievement Award for her work with the PIRATE Clinical Team and co-authored a peer-reviewed manuscript in 2014 that details the PIRATE program’s description, rationale, clinical processes, and outcomes. Dr. Patrick J. Doyle is a Speech Language Pathologist whose clinical and research work is focused on the rehabilitation of language processing disorders following brain injury. He is an Associate Professor of Communication Science and Disorders at the University of Pittsburgh, a Fellow of the American Speech Language and Hearing Association, and has received the Honors of the Association of VA Speech Language Pathologists. Dr. Doyle previously served as a Visiting Scientist in the Assessment, Classification and Epidemiology Unit of the World Health Organization in Geneva, Switzerland where he collaborated on the revision of the International Classification of Functioning Disability and Health (ICF). He is the developer of the Burden of Stroke Scale (BOSS) and the Founding Director of the Program for Intensive Residential Aphasia Treatment & Education (PIRATE). https://www.pittsburgh.va.gov/PIRATE/index.asp

Assessing the health of populations is important for various reasons, especially for health policy purposes. Therefore, there exists a substantial need for health comparisons between populations, including the comparison of individuals, groups of persons, or even populations from different countries, at one point in time and over time. Two fundamentally different approaches exist to assess the health of populations. The first approach relies on indirect measures of health, which are based on mortality and morbidity statistics, and which are therefore only available at the population level. The second approach relies on direct measures of health, which are collected – based on health surveys – at the individual level. Based on the needs for comparisons, indirect measures appear to be less appropriate, as they are only available at the population level, but not at the individual or group level. Direct measures, however, are originally obtained at the individual level, and can then be aggregated to any group level, even to the population level. Therefore, direct measures seem to be more appropriate for these comparison purposes. The open question is then how to compare overall health based on data collected within health surveys. At first glance, a single general health question seems to be appealing. However, studies have shown that this kind of question is not appropriate to compare health over time, nor across populations. Qualitative studies found that respondents even consider very different aspects of health when responding to such a question. A more appropriate approach seems to be the use of data on several domains of health, as for example mobility, self-care and pain. Anyway, measuring health based on a set of domains is an extremely frequent approach. It provides more comprehensive information and can therefore be used for a wider range of possible applications. However, three open questions must be addressed when measuring health based on a set of domains. First, a parsimonious set of domains must be selected. Second, health measurement based on this set of domains must be operationalized in a standardized way. Third, this information must be aggregated into a summary measure of health, thereby taking into account that categorical responses to survey questions could be differently interpreted by respondents, and are not necessarily directly comparable. These open questions are addressed in this doctoral thesis. The overall objective of this doctoral thesis is to develop a valid, reliable and sensitive metric of health – based on data collected on a set of domains – that permits to monitor the health of populations over time, and which provides the basis for the comparisons of health across different populations. To achieve this aim two psychometric studies were carried out, entitled “Towards a Minimal Generic Set of Domains” and “Development of a metric of health”. In the first study a minimal generic set of domains suitable for measuring health both in the general population and in clinical populations was identified, and contrasted to the domains of the World Health Survey (WHS). The eight domains of the WHS – mobility, self-care, pain and discomfort, cognition, interpersonal activities, vision, sleep and energy, and affect – were used as a reference, as this set – developed by the World Health Organization (WHO) – so far constitutes the most advanced proposal of what to measure for international health comparisons. To propose the domains for the minimal generic set, two different regression methodologies – Random Forest and Group Lasso – were applied for the sake of robustness to three different data sources, two national general population surveys and one large international clinical study: the German National Health Interview and Examination Survey 1998, the United States National Health and Nutrition Examination Survey 2007/2008, and the ICF Core Set studies. A domain was selected when it was sufficiently explanatory for self-perceived health. Based on the analyses the following set of domains, systematically named based on their respective categories within the International Classification of Functioning, Disability and Health (ICF), was proposed as a minimal generic set: b130 Energy and drive functions b152 Emotional functions b280 Sensation of pain d230 Carrying out daily routine d450 Walking d455 Moving around d850 Remunerative employment Based on this set, four of the eight domains of the WHS were confirmed both in the general and in clinical populations: mobility, pain and discomfort, sleep and energy, and affect. The other WHS domains not represented in the proposed minimal generic set are vision, which was only confirmed with data of the general population, self-care and interpersonal activities, which were only confirmed with data of the clinical population and cognition, which could not be confirmed at all. The ICF categories of `carrying out daily routine´ and `remunerative employment´ also fulfilled the inclusion criteria, though not directly related to any of the eight WHS domains. This minimal generic set can be used as the starting point to address one of the most important challenges in health measurement, namely the comparability of data across studies and countries. It also represents the first step for developing a common metric of health to link information from the general population to information about sub-populations, such as clinical and institutional populations, e.g. persons living in nursing homes. In the second study a sound psychometric measure was developed based on information collected on the domains of the minimal generic set: energy and drive functions, emotional functions, sensation of pain, carrying out daily routine, mobility and remunerative employment. It was demonstrated that this metric can be used to assess the health of populations and also to monitor health over time. To develop this metric of health, data from two successive waves of the English Longitudinal Study of Ageing (ELSA) was used. A specific Item Response Theory (IRT) model, the Partial Credit Model (PCM), was applied on 12 items representing the 6 domains from the minimal generic set. All three IRT model assumptions – unidimensionality, local independency and monotonicity – were examined and found to be fulfilled. The developed metric showed sound psychometric properties: high internal consistency reliability, high construct validity and high sensitivity to change. Therefore, it can be considered an appropriate measure of population health. Furthermore, it was demonstrated how the health of populations can be compared based on this metric, for subgroups of populations, and over time. Finally, it was outlined how this metric can be used as the basis for comparing health across different populations, as for example from two different countries. The developed health metric can be seen as the starting point for a wide range of health comparisons, between individuals, groups of persons and populations as a whole, and both at one point in time and over time. It opens up a wide range of possible applications for both health care providers and health policy, and both in clinical settings and in the general population.

Thu, 16 Jan 2014 12:00:00 +0100 https://edoc.ub.uni-muenchen.de/16623/ https://edoc.ub.uni-muenchen.de/16623/1/Mueller_Silvia_Margarete.pdf Müller, Silvia Margarete

Background: Visual impairment is associated with important limitations in functioning. The International Classification of Functioning, Disability and Health (ICF) adopted by the World Health Organisation (WHO) relies on a globally accepted framework for classifying problems in functioning and the influence of contextual factors. Its comprehensive perspective, including biological, individual and social aspects of health, enables the ICF to describe the whole health experience of persons with visual impairment. The objectives of this study are (1) to analyze whether the ICF can be used to comprehensively describe the problems in functioning of persons with visual impairment and the environmental factors that influence their lives and (2) to select the ICF categories that best capture self-perceived health of persons with visual impairment. Methods: Data from 105 persons with visual impairment were collected, including socio-demographic data, vision-related data, the Extended ICF Checklist and the visual analogue scale of the EuroQoL-5D, to assess self-perceived health. Descriptive statistics and a Group Lasso regression were performed. The main outcome measures were functioning defined as impairments in Body functions and Body structures, limitations in Activities and restrictions in Participation, influencing Environmental factors and self-perceived health. Results: In total, 120 ICF categories covering a broad range of Body functions, Body structures, aspects of Activities and Participation and Environmental factors were identified. Thirteen ICF categories that best capture self-perceived health were selected based on the Group Lasso regression. While Activities-and-Participation categories were selected most frequently, the greatest impact on self-perceived health was found in Body-functions categories. The ICF can be used as a framework to comprehensively describe the problems of persons with visual impairment and the Environmental factors which influence their lives. Conclusions: There are plenty of ICF categories, Environmental-factors categories in particular, which are relevant to persons with visual impairment, but have hardly ever been taken into consideration in literature and visual impairment-specific patient-reported outcome measures.

Background: The World Health Organization (WHO) has argued that functioning, and, more concretely, functioning domains constitute the operationalization that best captures our intuitive notion of health. Functioning is, therefore, a major public-health goal. A great deal of data about functioning is already available. Nonetheless, it is not possible to compare and optimally utilize this information. One potential approach to address this challenge is to propose a generic and minimal set of functioning domains that captures the experience of individuals and populations with respect to functioning and health. The objective of this investigation was to identify a minimal generic set of ICF domains suitable for describing functioning in adults at both the individual and population levels. Methods: We performed a psychometric study using data from: 1) the German National Health Interview and Examination Survey 1998, 2) the United States National Health and Nutrition Examination Survey 2007/2008, and 3) the ICF Core Set studies. Random Forests and Group Lasso regression were applied using one self-reported general-health question as a dependent variable. The domains selected were compared to those of the World Health Survey (WHS) developed by the WHO. Results: Seven domains of the International Classification of Functioning, Disability and Health (ICF) are proposed as a minimal generic set of functioning and health: energy and drive functions, emotional functions, sensation of pain, carrying out daily routine, walking, moving around, and remunerative employment. The WHS domains of self-care, cognition, interpersonal activities, and vision were not included in our selection. Conclusions: The minimal generic set proposed in this study is the starting point to address one of the most important challenges in health measurement - the comparability of data across studies and countries. It also represents the first step in developing a common metric of health to link information from the general population to information about sub-populations, such as clinical and institutionalized populations.

The core aim of nursing practice is to improve or maintain the person’s well-being and quality of life. The use of standardized classifications and terminologies can contribute to this aim by facilitating intra- and inter-professional communication. Therefore, it is important to explore approaches that enhance common use of the current standard classifications of all health-care professions. The overall objective of this doctoral thesis was to investigate whether the International Classification of Functioning, Disability and Health (ICF) is a practicable and useful classification for nurses - using spinal-cord injury (SCI) nursing as an example. This doctoral thesis comprises the research, results and conclusions of two original studies published in the nursing journal “Journal of Advanced Nursing” first authored by the doctoral candidate. The objective of the first study was to identify the conceptual and practical relationships between the inter-professional ICF and the nursing-specific NANDA-I Taxonomy II for nursing diagnoses. The specific research questions were: (1) What are the commonalities and differences between the conceptional frameworks and assessment principles of the ICF and the NANDA-I Taxonomy II? and (2) Can the two classifications serve as a combined approach in SCI nursing practice? The discussion of the conceptual and practical relationships between the ICF and the NANDA-I Taxonomy II is based on (1) the most recently published descriptions of both classifications and (2) the illustration of a SCI-specific case example presenting the combined use of both classifications. The objective of the second study was to analyse the extent to which the intervention goals of nurses when caring for persons with SCI can be expressed in the standardized language of the ICF. The specific research questions were: (1) Which problems, resources and aspects of the environment of persons with SCI relevant to nurses can be translated into the ICF language? and (2) Which problems, resources and aspects of the environment relevant to nurses are still missing in the ICF? The method used to answer these questions was a worldwide Delphi Survey with SCI nurses. The results of this doctoral thesis shed light on the use of the ICF in nursing practice. First, I discuss the commonalities and differences between the ICF and the NANDA-I Taxonomy II that should be taken into account when implementing both 10 classifications in nursing practice. Important clinical requirements that are exclusive to nursing can be met with the NANDA-I Taxonomy II. The application of the ICF helps nurses communicate abbreviated nursing issues with other health professionals in a common language. A combined application of the ICF and the NANDA-I Taxonomy II is valuable, and they can complement each other to enhance the quality of clinical teamwork and nursing practice. Second, I provide a list of patients’ problems, patients’ resources or aspects of their environment treated by SCI nurses that might be introduced in nursing practice for a comprehensive standardized documentation and for a better exchange of information in a common language with other health professionals. Third, I show the strengths and weaknesses of the ICF when used in nursing care specific to SCI and provide evidence for the update and future revisions of the ICF. For example, I propose to add two qualifiers, one for “Risk for” and one for “Resource for” to the existing qualifier scale. Several recommendations for future research are based on the results of this doctoral thesis. First, there is a need to continue exploring the simultaneous use of the ICF and NANDA-I Taxonomy II. A complete linking of both classifications could reveal their commonalities and differences in a more detailed way and identify all missing elements in the ICF for nursing purposes. Second, the list of patients’ problems, patients’ resources or aspects of their environment treated by SCI nurses should be validated in different nursing settings (e.g. acute hospital care, rehabilitative care and community care). This list should also be compared with the existing Comprehensive ICF Core Sets for SCI in the early post-acute context and long-term context. Third, the personal factors identified should be taken into account when developing the ICF component Personal Factors.

Inflammatory Bowel Disease (IBD) is a chronic disabling disease of the gastrointestinal tract. The disease is strongly associated with limited performance of everyday activities and restrictions in work and employment, recreation and relationships to others, as well as reduced quality of life. Thus, suffering from IBD includes not only impairments of body functions and body structures but also limitations of activities in everyday life and restrictions in participation. Consequentially, a comprehensive approach of functioning and disability is required when addressing the impact of IBD. There are a large number of outcome measures that assess health status problems of persons with IBD. Many of these measures used in clinical practice or research are classification or scoring systems that refer to disease activity and symptomatology in IBD in terms of impaired body functions and structures (e.g., Crohn's Disease Activity Index (CDAI), Harvey Bradshaw Index). Hence, disability and functioning from a comprehensive point of view are poorly addressed in these measures and do not cover the whole spectrum of problems persons with IBD have to deal with. Patient-reported outcome measures (PROMs) offer the possibility to assess health status problems from the perspective of persons suffering a disease. The number of IBD-specific PROMs which focus on aspects of functioning, disability and health (e.g., Inflammatory Bowel Disease Questionnaire (IBDQ-32), Rating Form of IBD Patient Concerns (RFIPC), Inflammatory Bowel Disease Stress Index (IBDSI)) has increased over the last years so that the selection of appropriate PROMs for specific purposes or subpopulations has become a challenge for clinicians and researchers. However, up to now it remains unclear whether currently used IBD-specific PROMs cover the whole spectrum of functioning and disability. This doctoral thesis examines the content of IBD-specific PROMs using the International Classification of Functioning, Disability and Health (ICF) as a reference to facilitate the selection of appropriate PROMs by clinicians and researchers. The ICF endorsed by the World Health Organization as a common language of functioning and disability is a proven and useful tool for the examination and comparison of the content of outcome measures. A systematic literature review was performed to identify IBD-specific PROMs used in studies involving persons with IBD. Searches were performed in the literature databases Medline®, EMBASE, PsycINFO, CINAHL and CENTRAL. Searches were limited to English articles published between 1999 and 2009. Eligibility checks of abstracts and full-texts were performed applying pre-defined inclusion and exclusion criteria. IBD-specific PROMs reported in the selected studies, as well as study-related characteristics, were extracted. The items of the identified PROMs were translated (“linked”) to the most specific ICF category according to standardized and established linking rules. The linked ICF categories provided the basis of the descriptive analysis and the comparison of the content of the different PROMs presented in this thesis. A total of 9,728 papers were identified by the searches in the five electronic databases. The randomly selected abstracts of 2,579 papers were checked on inclusion and exclusion criteria according to the defined eligibility criteria. Based on this abstract check, 221 studies were identified for further analysis. Screening these 221 full-text articles, 46 studies were finally selected that reported the use of IBD-specific PROMs. The following eight IBD-specific PROMs were identified: Cleveland Global Quality of Life (Faszio Score) (CGQL), Inflammatory Bowel Disease Quality of Life Questionnaire (IBDQOL), IBDQ-32, IBDSI, Inflammatory Bowel Disease Questionnaire – short form (IBDQ-9), RFIPC, Short Inflammatory Bowel Disease Questionnaire (SIBDQ) and Work Productivity and Activity Impairment: Crohn’s Disease (WPAI:CD). In total, these eight IBD-specific PROMs included 129 items which were linked to ICF categories. The most frequently identified ICF categories are 'b1300 Energy level' and 'b5254 Flatulence' (IBDQOL, IBDQ-32, IBDQ-9, RFIPC and SIBDQ), as well as 'd920 Recreation and leisure' (IBDQOL, IBDQ-32, IBDSI, IBS-QOL and SIBDQ). Most of the analyzed questionnaires do not cover a wide range of aspects needed to assess functioning and disability from a comprehensive perspective; they only focus on selected aspects of functioning and disability of persons with IBD (e.g., emotional functions, pain, intimate relationships and remunerative employment). This doctoral thesis provides an item-based examination of the content of IBD- specific PROMs using the ICF as a reference. It offers a clear and precise picture of the addressed PROMs and their contents and enable physicians and researchers a direct comparison of these contents. The ICF was established as a useful framework for examining and comparing IBD-specific PROMs and their items with respect to the areas of functioning and disability covered. This information can be useful in selecting PROMs for clinical practice, as well as for any kind of investigations in which functioning and disability of persons with IBD is a relevant study outcome.

The impact of inflammatory bowel disease (IBD) on disability remains poorly understood. The World Health Organization's integrative model of human functioning and disability in the International Classification of Functioning, Disability and Health (ICF) makes disability assessment possible. The ICF is a hierarchical coding system with four levels of details that includes over 1400 categories. The aim of this study was to develop the first disability index for IBD by selecting most relevant ICF categories that are affected by IBD.

Background: Schizophrenia is a significantly disabling disease that affects all major areas of life. There is a lack of comprehensive synthesis of research findings on the full extent of psychosocial difficulties (PSDs) experienced by people living with schizophrenia. This paper provides a systematic review of the literature concerning PSDs and their associated factors in schizophrenia. PSDs were conceptualized in accordance with the International Classification of Functioning, Disability and Health (ICF) as disabilities, in particular impairments of mental functions, activity limitations and participation restrictions. Methods: An electronic search using MEDLINE and PsychINFO plus a manual search of the literature was performed for qualitative and longitudinal studies published in English between 2005 and 2010 that examined PSDs in persons with schizophrenia. The ICF was used as a conceptual framework. Results: A total of 104 papers were included. The most frequent PSDs addressed in the literature were not specific ones, directly linkable to the ICF categories of mental functions, activity limitations or participation restrictions, but broad areas of psychosocial functioning, such as psychopathological symptoms (53% of papers) or global disability and functioning (37%). Among mental functions, the most extensively studied were cognitive functions (27%) and emotional functions (27%). Within the domain of activities and participation, the most widely investigated were difficulties in relationships with others (31%) and employment (20%). Of the factors associated with the intensity or course of PSDs, the most commonly identified were treatment modalities (56%), psychopathological symptoms (26%), and socio-demographic variables (24%). Medication tended to improve the most relevant PSD, but at the same time was the only consistently reported determinant of onset of PSDs (emerging as unwanted side-effects). Conclusions: The present review illustrates the remarkably broad scope and diversity of psychosocial areas affected in schizophrenia and shows how these areas are interconnected and how they interact with contextual factors. The need for a shift in focus of schizophrenia research is suggested - from an excessive reliance on global measures of psychopathology and disability for defining outcomes to the creation of profiles of specific PSDs that have a more direct bearing on the disabling experience and real-world functioning of patients and can serve to guide interventions and monitoring over time.

Purpose: Aims of this study were to identify aspects of functioning and health relevant to patients with vertigo expressed by ICF categories and to explore the potential of the ICF to describe the patient perspective in vertigo. Methods: We conducted a series of qualitative semi-structured face-to-face interviews using a descriptive approach. Data was analyzed using the meaning condensation procedure and then linked to categories of the International Classification of Functioning, Disability and Health (ICF). Results: From May to July 2010 12 interviews were carried out until saturation was reached. Four hundred and seventy-one single concepts were extracted which were linked to 142 different ICF categories. 40 of those belonged to the component body functions, 62 to the component activity and participation, and 40 to the component environmental factors. Besides the most prominent aspect "dizziness" most participants reported problems within "Emotional functions (b152), problems related to mobility and carrying out the daily routine. Almost all participants reported "Immediate family (e310)" as a relevant modifying environmental factor. Conclusions: From the patients' perspective, vertigo has impact on multifaceted aspects of functioning and disability, mainly body functions and activities and participation. Modifying contextual factors have to be taken into account to cover the complex interaction between the health condition of vertigo on the individuals' daily life. The results of this study will contribute to developing standards for the measurement of functioning, disability and health relevant for patients suffering from vertigo.

This doctoral project seeks to answer the question about the essence of functioning, disability and health in the lived experience of persons with any kind of primary sleep disorder. Its overall objective is the development of a first version of Core Sets of categories of the International Classification of Functioning, Disability and Health (ICF) in an evidence- and consensus-based process. To this end, four separate studies exploring different perspectives (researcher, clinical, patient, health professional) have been conducted and their results provided the evidence basis for selecting the relevant categories for the ICF Core Sets for Sleep Disorders during an international consensus conference. The doctoral thesis first-authored by the doctoral candidate therefore consists of five separate publications (1 Systematic Review, 2 Patient Studies, 1 Expert Survey, 1 Conference Results) that describe the different steps in the development process.

Multiple sclerosis (MS) has a great impact on functioning and disability. The perspective of those who experience the health problem has to be taken into account to obtain an in-depth understanding of functioning and disability. The objective was to describe the areas of functioning and disability and relevant contextual factors in MS from the patient perspective. A qualitative study using focus group methodology was performed. The sample size was determined by saturation. The focus groups were digitally recorded and transcribed verbatim. The meaning condensation procedure was used for data analysis. Identified concepts were linked to International Classification of Functioning, Disability and Health (ICF) categories according to established linking rules. Six focus groups with a total of 27 participants were performed. In total, 1327 concepts were identified and linked to 106 ICF categories of the ICF components Body Functions, Activities and Participation and Environmental Factors. This qualitative study reports on the impact of MS on functioning and disability from the patient perspective. The participants in this study provided information about all physical aspects and areas of daily life affected by the disease, as well as the environmental factors influencing their lives.

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Objective: The “Comprehensive ICF Core Set for Rheumatoid Arthritis (RA)” is an application of the International Classification of Functioning, Disability and Health (ICF) and represents the typical spectrum of problems in functioning of patients with RA. The objective of this study was to validate this ICF Core Set from the perspective of physicians. Methods: Physicians experienced in RA treatment were asked about the patients’ problems, patients’ resources and aspects of environment from their scope of practice. This survey was conducted via e-mail in three rounds using the Delphi technique. The responses were linked to the ICF by two trained individuals according to empirically tested linking rules. Consensus of the results was calculated statistically by the statistical Kappa coefficient. Results: 79 physicians in 41 countries named 512 patients’ problems spanning all ICF components. 227 ICF categories were linked to the physicians’ responses. 16 ICF categories were not represented in the Comprehensive ICF Core Set for RA although at least 75% of the participants have rated them as important. 19 issues were not covered by the ICF classification and 26 answers were linked to the not yet developed ICF component Personal factors. Conclusion: The validity of the ICF components Body Structures, Activities and Participation and Environmental Factors was well supported by the physicians whereas there was less support for the validity of the component Body Functions. Several issues arose that are not covered and need to be investigated further.

Objective: To report on the results of a standardised consensus process agreeing on concepts typical and/or relevant when classifying functioning and health in patients with ankylosing spondylitis (AS) based on the International Classification of Functioning and Health (ICF). Methods: Experts in AS from different professional and geographical backgrounds attended a consensus conference and were divided into three working groups. Rheumatologists were selected from members of the Assessment of SpondyloArthritis international Society (ASAS). Other health professionals were recommended by ASAS members. The aim was to compose three working groups with five to seven participants to allow everybody's contribution in the discussions. Experts selected ICF categories that were considered typical and/or relevant for AS during a standardised consensus process by integrating evidence from preceding studies in alternating working group and plenary discussions. A Comprehensive ICF Core Set was selected for the comprehensive classification of functioning and a Brief ICF Core Set for application in trials. Results: The conference was attended by 19 experts from 12 countries. Eighty categories were included in the Comprehensive Core Set, which included 23 Body functions, 19 Body structures, 24 Activities and participation and 14 Environmental factors. Nineteen categories were selected for the Brief Core Set, which included 6 Body functions, 4 Body structures, 7 Activities and participation and 2 Environmental factors. Conclusion: The Comprehensive and Brief ICF Core Sets for AS are now available and aim to represent the external reference to define consequences of AS on functioning.

Objective: To report on the results of a standardised consensus process agreeing on concepts typical and/or relevant when classifying functioning and health in patients with ankylosing spondylitis (AS) based on the International Classification of Functioning and Health (ICF).Methods: Experts in AS from different professional and geographical backgrounds attended a consensus conference and were divided into three working groups. Rheumatologists were selected from members of the Assessment of SpondyloArthritis international Society (ASAS). Other health professionals were recommended by ASAS members. The aim was to compose three working groups with five to seven participants to allow everybody's contribution in the discussions. Experts selected ICF categories that were considered typical and/or relevant for AS during a standardised consensus process by integrating evidence from preceding studies in alternating working group and plenary discussions. A Comprehensive ICF Core Set was selected for the comprehensive classification of functioning and a Brief ICF Core Set for application in trials.Results: The conference was attended by 19 experts from 12 countries. Eighty categories were included in the Comprehensive Core Set, which included 23 Body functions, 19 Body structures, 24 Activities and participation and 14 Environmental factors. Nineteen categories were selected for the Brief Core Set, which included 6 Body functions, 4 Body structures, 7 Activities and participation and 2 Environmental factors.Conclusion: The Comprehensive and Brief ICF Core Sets for AS are now available and aim to represent the external reference to define consequences of AS on functioning.

Background: Management decisions regarding quality and quantity of nurse staffing have important consequences for hospital budgets. Furthermore, these management decisions must address the nursing care requirements of the particular patients within an organizational unit. In order to determine optimal nurse staffing needs, the extent of nursing workload must first be known. Nursing workload is largely a function of the composite of the patients' individual health status, particularly with respect to functioning status, individual need for nursing care, and severity of symptoms. The International Classification of Functioning, Disability and Health (ICF) and the derived subsets, the so-called ICF Core Sets, are a standardized approach to describe patients' functioning status. The objectives of this study were to (1) examine the association between patients' functioning, as encoded by categories of the Acute ICF Core Sets, and nursing workload in patients in the acute care situation, (2) compare the variance in nursing workload explained by the ICF Core Set categories and with the Barthel Index, and (3) validate the Acute ICF Core Sets by their ability to predict nursing workload. Methods: Patients' functioning at admission was assessed using the respective Acute ICF Core Set and the Barthel Index, whereas nursing workload data was collected using an established instrument. Associations between dependent and independent variables were modelled using linear regression. Variable selection was carried out using penalized regression. Results: In patients with neurological and cardiopulmonary conditions, selected ICF categories and the Barthel Index Score explained the same variance in nursing workload (44% in neurological conditions, 35% in cardiopulmonary conditions), whereas ICF was slightly superior to Barthel Index Score for musculoskeletal conditions (20% versus 16%). Conclusions: A substantial fraction of the variance in nursing workload in patients with rehabilitation needs in the acute hospital could be predicted by selected categories of the Acute ICF Core Sets, or by the Barthel Index score. Incorporating ICF Core Set-based data in nursing management decisions, particularly staffing decisions, may be beneficial.

Background: Functioning and disability are universal human experiences. However, our current understanding of functioning from a comprehensive perspective is limited. The development of the International Classification of Functioning, Disability and Health (ICF) on the one hand and recent developments in graphical modeling on the other hand might be combined and open the door to a more comprehensive understanding of human functioning. The objective of our paper therefore is to explore how graphical models can be used in the study of ICF data for a range of applications. Methods: We show the applicability of graphical models on ICF data for different tasks: Visualization of the dependence structure of the data set, dimension reduction and comparison of subpopulations. Moreover, we further developed and applied recent findings in causal inference using graphical models to estimate bounds on intervention effects in an observational study with many variables and without knowing the underlying causal structure. Results: In each field, graphical models could be applied giving results of high face-validity. In particular, graphical models could be used for visualization of functioning in patients with spinal cord injury. The resulting graph consisted of several connected components which can be used for dimension reduction. Moreover, we found that the differences in the dependence structures between subpopulations were relevant and could be systematically analyzed using graphical models. Finally, when estimating bounds on causal effects of ICF categories on general health perceptions among patients with chronic health conditions, we found that the five ICF categories that showed the strongest effect were plausible. Conclusions: Graphical Models are a flexible tool and lend themselves for a wide range of applications. In particular, studies involving ICF data seem to be suited for analysis using graphical models.

Background: The WHODAS-2 is a disability assessment instrument based on the conceptual framework of the International Classification of Functioning, Disability, and Health (ICF). It provides a global measure of disability and 7 domain-specific scores. The aim of this study was to assess WHODAS-2 conceptual model and metric properties in a set of chronic and prevalent clinical conditions accounting for a wide scope of disability in Europe. Methods: 1,119 patients with one of 13 chronic conditions were recruited in 7 European centres. Participants were clinically evaluated and administered the WHODAS-2 and the SF-36 at baseline, 6 weeks and 3 months of follow-up. The latent structure was explored and confirmed by factor analysis (FA). Reliability was assessed in terms of internal consistency (Cronbach's alpha) and reproducibility (intra-class correlation coefficients, ICC). Construct validity was evaluated by correlating the WHODAS-2 and SF-36 domains, and comparing known groups based on the clinical-severity and work status. Effect size (ES) coefficient was used to assess responsiveness. To assess reproducibility and responsiveness, subsamples of stable (at 6 weeks) and improved (after 3 moths) patients were defined, respectively, according to changes in their clinical-severity. Results: The satisfactory FA goodness of fit indexes confirmed a second order factor structure with 7 dimensions, and a global score for the WHODAS-2. Cronbach's alpha ranged from 0.77 (self care) to 0.98 (life activities: work or school), and the ICC was lower, but achieved the recommended standard of 0.7 for four domains. Correlations between global WHODAS-2 score and the different domains of the SF-36 ranged from -0.29 to -0.65. Most of the WHODAS-2 scores showed statistically significant differences among clinical-severity groups for all pathologies, and between working patients and those not working due to ill health (p < 0.001). Among the subsample of patients who had improved, responsiveness coefficients were small to moderate (ES = 0.3-0.7), but higher than those of the SF-36. Conclusions: The latent structure originally designed by WHODAS-2 developers has been confirmed for the first time, and it has shown good metric properties in clinic and rehabilitation samples. Therefore, considerable support is provided to the WHODAS-2 utilization as an international instrument to measure disability based on the ICF model.

Background: Malnutrition is a common problem in patients with cancer. One possible strategy to prevent malnutrition and further deterioration is to administer home-parenteral nutrition (HPN). While the effect on survival is still not clear, HPN presumably improves functioning and quality of life. Thus, patients' experiences concerning functioning and quality of life need to be considered when deciding on the provision of HPN. Currently used quality of life measures hardly reflect patients' perspectives and experiences. The objective of our study was to investigate the perspectives of patients with cancer on their experience of functioning and health in relation to HPN in order to get an item pool to develop a comprehensive measure to assess the impact of HPN in this population. Methods: We conducted a series of qualitative semi-structured interviews. The interviews were analysed to identify categories of the International Classification of Functioning, Disability and Health (ICF) addressed by patients' statements. Patients were consecutively included in the study until an additional patient did not yield any new information. Results: We extracted 94 different ICF-categories from 16 interviews representing patient-relevant aspects of functioning and health (32 categories from the ICF component `Body Functions', 10 from `Body Structures', 32 from `Activities & Participation', 18 from `Environmental Factors'). About 8% of the concepts derived from the interviews could not be linked to specific ICF categories because they were either too general, disease-specific or pertained to `Personal Factors'. Patients referred to 22 different aspects of functioning improving due to HPN; mainly activities of daily living, mobility, sleep and emotional functions. Conclusions: The ICF proved to be a satisfactory framework to standardize the response of patients with cancer on HPN. For most aspects reported by the patients, a matching concept and ICF category could be found. The development of categories of the component `Personal Factors' should be promoted to close the existing gap when analyzing interviews using the ICF. The identification and standardization of concepts derived from individual interviews was the first step towards creating new measures based on patients' preferences and experiences which both catch the most relevant aspects of functioning and are sensitive enough to monitor change associated to an intervention such as HPN in a vulnerable population with cancer.

Introduction Functioning is recognized as an important study outcome in chronic widespread pain (CWP). The Comprehensive ICF Core Set for CWP is an application of the International Classification of Functioning, Disability and Health ( ICF) with the purpose of representing the typical spectrum of functioning of patients with CWP. The objective of the study was to add evidence to the validation of the Comprehensive ICF Core Set for CWP from the patient perspective. The specific aims were to explore the aspects of functioning and health important to patients with fibromyalgia, and to examine to what extent these aspects are represented by the current version of the Comprehensive ICF Core Set for CWP. Methods The sampling of patients followed the maximum variation strategy. Sample size was determined by saturation. The focus groups were digitally recorded and transcribed verbatim. The meaning condensation procedure was used for qualitative data analysis. After qualitative data analysis, the identified concepts were linked to ICF categories. Results Thirty-three patients participated in six focus groups. Fifty-four ICF categories out of 67 categories of the Comprehensive ICF Core Set for CWP were reported by the patients. Forty-eight additional categories that are not covered in the Comprehensive ICF Core Set for CWP were raised. Conclusions Most ICF categories of the existing version of the Comprehensive ICF Core Set for CWP could be confirmed from the patient perspective. However, several categories not included in the Core Set emerged and should be considered for inclusion.

Background: The comprehensive International Classification of Functioning, Disability and Health (ICF) Core Set for rheumatoid arthritis (RA) is a selection of 96 categories from the ICF, representing relevant aspects in the functioning of patients with RA. Objectives: To study the responsiveness of the ICF Core Set for RA in rheumatological practice. Methods: A total of 46 patients with RA (72% women, mean (SD) age 53.6 (12.6) years, disease duration 6.3 (8.0) years) were interviewed at baseline and again after 6 months treatment with a disease-modifying antirheumatic drug (DMARD), applying the ICF Core Set for RA with qualifiers for problems on a modified three-point scale (no problem, mild/moderate, severe/complete). Patient-reported outcomes included Modified Health Assessment Questionnaire (MHAQ) and Short-Form 36 (SF-36) health survey, and disease activity was calculated. Responsiveness was measured as change in qualifiers in ICF categories, and was also compared with change in patient-reported outcomes. Results: After 6 months of DMARD treatment, improvement by at least one qualifier was seen in 20% of patients (averaged across all ICF categories), 71% experienced no change and 9% experienced worsening symptoms. Findings were similar across the different aspects of functioning. Mainly moderate effect sizes were seen for 6-month changes in the ICF Core Set for RA, especially in patients with improved health status, with similar effect size for disease activity. The components in the ICF Core Set for RA were only weakly associated with patient-reported outcomes and disease activity. Conclusions: The ICF Core Set for RA demonstrated moderate responsiveness in this real-life setting of patients where minor changes occurred during treatment with DMARDs.

Introduction Rheumatoid Arthritis is a chronic, systemic, inflammatory disease causing disability. Identifying factors that influence the impact of the disease is important for planning adequate therapy. Knowing the effect on activities and on participation according to the International Classification of Functioning, Disability and Health (ICF) in daily living determines the rehabilitation therapy management. Objectives Objectives were to evaluate, which factors contribute how much to the explanation of activity limitations measured by the Health Assessment Questionnaire HAQ (model I) and which factors contribute how much to the explanation of participation restrictions measured by the Social Function Scale of SF-36 (model II) in RA according to the ICF. Design and Patients Cross-sectional data collection of variables concerning the health status of 239 consecutively included patients with RA at the outpatient departments of Physical Medicine and Rehabilitation of the University Hospital of Zurich, Switzerland, and of the University Hospital of Munich, Germany was conducted. Measures: Disease Activity Score (DAS-28), Rheumatoid Arthritis Disease Activity Index (RADAI), Health Assessment Questionnaire (HAQ), Short-form-36 (SF-36), Sociodemography Questionnaire, Comorbidity Questionnaire (SCQ), Muscle Strength Index (MSI), range of motion (EPM-ROM), grip strength, Sequentional Occupational and Dexterity Assessment (SODA), radiologic score (Ratingen Score). Analyses Multivariate regression analyses were conducted building models of explanation. Results In Model I Vitality, RADAI, DAS, SODA PAIN Score, MSI and EPM-ROM were found to be explaining variables with a globally explained variance of 53%. In Model II these were Vitality, Mental Health, the HAQ and Living alone with a globally explained variance of 42.4%. Conclusion Activity limitations in RA were mainly explained by Vitality and disease activity factors. Restrictions in participation in RA were mainly explained by Vitality and Mental Health.

Hintergrund: Patienten mit chronisch-obstruktiver Lungenerkrankung (COPD) berichten häufig in fast allen Bereichen ihres Lebens über Einschränkungen der funktionalen Gesundheit. Die International Classification of Functioning, Disability and Health (ICF) ist ein zur Erfassung der funktionalen Gesundheit umfassendes Klassifikationssystem. Ziel: Ziel dieser Studie war es deshalb inhaltliche Aspekte des Outcome-Assessments klinischer Studien zur COPD unter Verwendung der ICF als Kodiersystem zu analysieren. Dazu gehörten neben der Bestimmung der Häufigkeit von verschiedenen Kategorien von Outcome-Maßen die Ermittlung des Spektrums und der Häufigkeit von ICF-Kategorien, die in den ermittelten Outcome-Maßen identifiziert werden konnten sowie die Evaluation säkulärer Trends der verwendeten ICF-Kategorien. Zusätzlich wurden verwendete Fragebögen zur Beurteilung der Lebensqualität inhaltsanalytisch untersucht sowie ihre Häufigkeit und säkuläre Trends evaluiert. Als Begleitfragestellung sollte der säkuläre Trend der verschiedenen Interventionsarten untersucht werden. Methodik: Dazu wurde eine systematischer Review in Form einer quantitativen Inhaltsanalyse durchgeführt. Als Kodiersystem wurde die ICF verwendet. Die Outcome-Instrumente wurden aus randomisierten, klinischen, kontrollierten Studien, publiziert in der Datenbank MEDLINE® in den Jahren 1991 bis 2000, selektiert. Aus den Outcome-Maßen wurden Inhaltsmerkmale ausgewählt, die dann mittels der ICF verschlüsselt wurden. Nur 2-stufige ICF-Kategorien, die im Outcome-Assessment von mindestens 10% der Studien vorkamen, wurden berücksichtigt. Die Prävalenz der ICF-Kategorien wurde sowohl bezogen auf alle eingeschlossenen Studien als auch stratifiziert nach Interventionsarten ermittelt. Säkuläre Trends wurden im 2-Jahresabstand dargestellt. Ergebnisse: 287 Studien wurden in den Review eingeschlossen. Darin wurden 632 ver-schiedene Outcome-Maße verwendet. 93% der Studien führten apparative Tests durch, 64% erfragten Einzelitems, 49% verwendeten Labortests, 40% führten klinische Studien durch, 24% verwendeten Fragebögen, und in 24% aller Studien wurden unerwünschte Ereignisse dokumentiert. 87% aller selektierten Inhaltsmerkmale konnten der ICF zugeordnet werden. Die am häufigsten verwendeten ICF-Kategorien bezogen sich mit Lungenfunktion zu 93%, Empfindungen des kardiovaskulären und des Atmungssystems zu 54% und kardiovaskuläre Belastbarkeit zu 46% auf Kategorien der Körperfunktion. Erst nach den Herzfunktionen mit 36%, ebenfalls der Komponente Körperfunktionen, erscheint mit der ICF-Kategorie ‚Gehen’ mit 35% eine ICF-Kategorie der Komponente Aktvität und Teilhabe. Lediglich in Studien, die Fragebögen beinhalteten, wurden über die ICF-Komponente ‚Körperfunktionen’ hinausgehende Inhalte erhoben. Am häufigsten wurde die Wirksamkeit von Medikamenten untersucht (n=189), die Wirksamkeit von Rehabilitationsmaßnahmen untersuchten 67 Studien. Fragebögen wurden mit deutlich häufiger in Rehabilitationsstudien als in medikamentösen Studien verwendet. Die Anzahl der Rehabilitationsstudien stieg im untersuchten Zeitraum in der zweiten Hälfte auf fast das Doppelte an. Ein gering zunehmender säkulärer Trend zeigt sich auch in der Anwendung von krankheitsspezifischen Fragebögen in allen Studien. Diskussion und Schlussfolgerung: Die inhaltliche Ausrichtung des Outcome-Assessments klinischer Studien zur COPD basiert zum großen Teil auf die Untersuchung von Körperfunktionen. In zukünftigen Studien sollten andere Aspekte der COPD wie begleitende psychologische Symptome und soziale Partizipation stärkere Berücksichtigung finden.

1. Background Stroke is a frequently occurring condition and a common cause of death and disability. Many stroke survivors are facing long-term disability. The consequences of stroke on patients’ functioning are usually complex and heterogeneous. Precise knowledge of patients’ stroke related disability is necessary in health services provision and research. Clinical stroke management, but also epidemiological and clinical research, depend on the careful detection of functioning problems, as well as resources, in patients with stroke. Two conceptual approaches to describe patients’ disability can be distinguished: the health status measurement and the classification approach. Health status measures, like standardized performance tests, rating scales, and questionnaires are used to operationalize and to assess patients’ burden of disease, functioning and health. The classification approach towards the description of patients’ health state is represented by the World Health Organization’s International Classification of Functioning, Disability and Health (ICF). The ICF provides a comprehensive conceptual framework and a unified standardized language to describe health and health related states, both at the individual, as well as at population levels. To enhance the applicability of the classification, ICF Core Sets for specific health conditions have been developed in an evidence based and consensus based process. The ICF Core Sets for Stroke are selections of salient ICF categories out of the whole classification, which describe the spectrum of problems in stroke patients’ functioning based on the universal language of the ICF. The ICF Core Sets for Stroke represent the practical implementation of the classification approach in clinical practice and research. The two approaches to represent stroke related disability, the health status measurement and the classification approach, can be regarded as complementary principles. From the classification perspective, the ICF and the ICF Core Sets can serve as standards to define what to measure. From the perspective of health status measurement the question how to measure can be answered. An explicit connection between the two approaches can be established by the so-called linking method. Thereby, using the ICF’s category system the contents of measures can be mapped, explored and compared in a standardized, transparent and straightforward way. The linking method can be useful for various purposes. The application of the linking method along with the ICF Core Sets constitutes a new approach for examining health status measures’ content validity. However, beyond content validity, meaningful measurement essentially depends on the psychometric quality of the applied instruments. Techniques based on modern test theory, especially Rasch analysis, are increasingly adopted to ensure instruments’ psychometric properties. 2. Objectives In the following, the doctoral thesis is subdivided into four parts. The first three parts present different studies performed to pursue the objectives named below. Each of the three studies contains a respective discussion section referring to the results of the study. The fourth part of the doctoral thesis refers to aim four, namely the discussion of the relationship between the methods presented in the previous three parts. The current doctoral thesis aims (1) to illustrate, how the connection between the health status measurement approach and the classification approach can be established by the application of the linking method, (2) to demonstrate, how this approach can be used to select health status measures based on their content validity, (3) to show, how the psychometric features of health status measures can be examined based on Rasch analyses, and (4) to discuss the relationship between the demonstrated methods in the context of the connection of the health status measurement and the classification approach. 3. Applying the linking method: Content comparison of patient-centered health status measures used in stroke based on the International Classification of Functioning, Disability and Health (ICF) The first study, “Content comparison of patient-centered health status measures used in stroke based on the International Classification of Functioning, Disability and Health (ICF)” illustrates the application of the linking method in stroke measurement. The objective of this study was to examine and to compare the contents of patient-centred health status measures used in stroke. The specific aims of the study included the identification of generic and condition-specific patient-centred health status measures applied in stroke patients, the examination of the contents of the single measures based on their linking to the ICF, and the comparison of the contents of generic and stroke-specific measures. A systematic literature review was conducted to identify current generic and condition-specific patient-centred health status measures applied in stroke. The most frequently used instruments were selected. The contents of the selected measures were examined by linking the concepts within the instruments’ items to the ICF. Six generic and seven stroke-specific health status measures were selected. Within the selected instruments 979 concepts were identified. 200 different ICF categories were used to map these concepts. No single ICF category is contained in all instruments. Out of the total 200 different ICF categories used, 77 (40%) applied to only one of the 13 selected measures. Overall, the most frequently used category is b152 emotional functions’ contained in 53 items from 10 instruments. Stroke-specific measures more often address mental functions, while the selected generic instruments more often include Environmental Factors. The study provides an overview on current patient-centered health status measures in stroke and their covered contents. The results of the content comparison provide valuable information to facilitate and to account for the selection of appropriate instruments for specific purposes in clinical as well as research settings. 4. Selecting health status measures based on content validity: Comparison of stroke-specific health status measures with the Comprehensive ICF Core Set for Stroke The aim of the second study is to demonstrate how the ICF as a fundamental reference can be used to select health status measures according to their content validity. The specific aims are (1) to examine the content validity of the selected stroke-specific health status measures by comparing them with the Comprehensive ICF Core Set for Stroke, and (2) to discuss the selection of measures based on their coverage of the ICF Core Set. Taking the results from the previous study, the seven stroke-specific patient-centered health status measures are involved in the current analyses and compared to the Comprehensive ICF Core Set for Stroke. Descriptive frequency analyses are conducted to indicate the instruments’ bandwidth and specificity of content coverage regarding the ICF Core Set. 67 (52%) out of the 130 categories of the ICF Core Set are covered by at least one of the examined instruments. The single measures cover in total between 29% and 14% of the Comprehensive ICF Core Set for Stroke. Overall, 31 categories of the ICF Core Set are measured at the more specific 3rd and 4th levels by at least one of the seven instruments. All instruments cover Activity and Participation and Body Functions, but only two instruments address Environmental Factors. No categories of the ICF component Body Structures are contained in the examined instruments. In contrast the Comprehensive ICF Core Set for Stroke contains categories from all ICF components. The Quality of Life Instrument for Young Haemorrhagic Stroke Patients (HSQuale), the Stroke-specific Quality of Life Scale (SSQoL), and the Stroke Impact Scale(SIS) represent the top three instruments according to bandwidth as well as specificity of content coverage. The comparison of instruments against the Comprehensive ICF Core Set for Stroke can be used to characterize and compare measures’ content validity. The examination and comparison of patient-centered health status measures’ content validity accounting for the bandwidth and the specificity of content coverage can serve as a first step of selecting a measure. However, further features of the measures have to be considered. Especially, their psychometric properties have to be carefully examined to accomplish the well-founded choice of appropriate measures to assess stroke related health status. 5. Applying the Rasch method: Evaluation of the Stroke Impact Scale using Rasch Analyses The third study, the “Evaluation of the Stroke Impact Scale using Rasch Analyses” undertakes the psychometric evaluation of the Stroke Impact Scale 2.0 (SIS), in a German sample adopting Rasch based techniques. The specific aims of the study were to examine (1) the unidimensionality of the SIS domains and item fit, (2) the structure of the response scales, (3) the targeting of the domains, (4) reliability, (5) differential item functioning (DIF) or item bias for relevant patient groups, and (6) to compare the fit results of this study with the Rasch analysis results of the SIS 2.0 in a North American sample which led to the creation of the most current version of the SIS, the SIS 3.0. The Rasch analyses based on Master’s Partial Credit model has been carried out using data collected from stroke patients in Germany within an ongoing multicentric international study. 196 stroke patients from 16 study centers participated in the study and completed the Stroke Impact Scale. Unidimensionality of the eight SIS domains was confirmed according to the mean infit statistics (.97 to 1.02). 7 items displayed model misfit. Response categories of 25 items showed threshold disordering. For the domains Communication and Memory/Thinking ceiling effects (>3 logits) became apparent. Reliability values lay above .80 in six domains. No DIF was found as to age, gender, disability severity, and rehabilitation setting. Item fit results in the current study differed from those in the reference study of the SIS 2.0 in a North American sample. The SIS is according to its psychometric qualities a sufficiently robust, valid and reliable measure of stroke-specific quality of life. It seems suitable to capture consequences of stroke in patients’ with different levels of disability severity, within an inpatient as well as an outpatient setting, across age groups and genders. However, the response categories currently used with the SIS should be object to further study and revision. The fit results of the reference study of the SIS 2.0 could not be replicated and therefore, an item reduced version of the German SIS equivalent to the most current SIS 3.0 can not be created. Thus, the SIS needs to prove its cross-cultural validity in future. 6. Discussion: Towards a unified measurement approach in stroke Two complementary principles towards the description of disability have been introduced: the health status measurement and the classification approach. Connected to these conceptual approaches two methodological procedures have been regarded: the linking method and the Rasch method. The application of both methods has been illustrated. The connection of the classification approach with the health status measurement approach entails advantages reaching beyond the applications presented here. Rasch analysis and the linking method, representing qualitative and quantitative methods, may shed light on different facets of stroke measurement, which combined increase information value and lead to a complete picture of functioning and health. Advances of the classification approach, like the development of the ICF Core Sets for Stroke, and advances in health status measurement, like the application of Rasch analyses can be concatenated by the linking method. From this concatenation of different conceptual and methodological approaches, unified and comparable, conceptually sound, high quality measurement of functioning can emerge. The integration of a common reference framework with the merits of objective measurement within the proceedings of item banking and adaptive testing can contribute to compass a common standard and agreement on what and how to measure. A unified measurement approach could thereby be achieved in stroke. Advanced measurement can serve to promote precise, comprehensive, and efficient knowledge of stroke disability at the individual and at population levels, to enable better decisions for treatment and action, in the long run improving stroke care and relieving the burden to the patients.

Background: The comprehensive ICF Core Set for rheumatoid arthritis (RA) is a selection of 96 categories from the International Classification of Functioning, Disability and Health (ICF), representing relevant aspects in the functioning of RA patients. Objectives: To study the reliability of the ICF Core Set for RA in rheumatological practice, and to explore the metric of the qualifiers’ scale. Methods: 25 RA patients from an outpatient department of rheumatology were interviewed using the ICF Core Set for RA (76% females, mean (SD) age 57.5 (12.5) years, disease duration 15.9 (14.6) years). Interviews were performed independently by both a physiotherapist and an occupational therapist on the same day and again after one week by one of them. The severity of the patients’ problems was quantified on a qualifier scale ranging from 0 (no problem) to 4 (complete problem). Analyses of intra-rater and inter-rater agreement, kappa statistics, and Rasch analyses were applied. Results: Mean intra-rater (inter-rater) complete agreement for all categories was seen in 59% (47%) of observations, ranging from 29% (0%) to 96% (80%) for individual categories. Weighted kappa statistics with value >0.4 showed reliability in 86% of categories within raters, and in 43% of categories between raters. Improved inter-rater and intra-rater reliability was observed with a reduced number of qualifiers for the categories. Conclusions: Inter-rater and intra-rater reliability of the ICF Core Set of RA was low to moderate. The metric of the qualifiers’ scale may be improved by reducing the number of qualifiers to three for all components.

Functioning is recognized as an important study outcome in rheumatoid arthritis ( RA). The Comprehensive ICF Core Set for RA is an application of the International Classification of Functioning, Disability and Health ( ICF) of the World Health Organisation with the purpose of representing the typical spectrum of functioning of patients with RA. To strengthen the patient perspective, persons with RA were explicitly involved in the validation of the Comprehensive ICF Core Set for RA using qualitative methodology. The objective of the study was twofold: to come forward with a proposal for the most appropriate methodology to validate Comprehensive ICF Core Sets from the patient perspective; and to add evidence to the validation of the Comprehensive ICF Core Set for RA from the perspective of patients. The specific aims were to explore the aspects of functioning and health important to patients with RA using two different focus group approaches ( open approach and ICF-based approach) and to examine to what extent these aspects are represented by the current version of the Comprehensive ICF Core Set for RA. The sampling of patients followed the maximum variation strategy. Sample size was determined by saturation. The focus groups were digitally recorded and transcribed verbatim. The meaning condensation procedure was used for the data analysis. After qualitative data analysis, the resulting concepts were linked to ICF categories according to established linking rules. Forty-nine patients participated in ten focus groups ( five in each approach). Of the 76 ICF categories contained in the Comprehensive ICF Core Set for RA, 65 were reported by the patients based on the open approach and 71 based on the ICF-based approach. Sixty-six additional categories ( open approach, 41; ICF-based approach, 57) that are not covered in the Comprehensive ICF Core Set for RA were raised. The existing version of the Comprehensive ICF Core Set for RA could be confirmed almost entirely by the two different focus group approaches applied. Focus groups are a highly useful qualitative method to validate the Comprehensive ICF Core Set for RA from the patient perspective. The ICF-based approach seems to be the most appropriate technique.

Zusammenfassung Die ‚International Classification of Functioning, Disability and Health’ (ICF) ist eine Klassifikation für Alltagsfunktionen und Gesundheit in der Rehabilitation und stellt außerdem einen gemeinsamen Bezugsrahmen für alle Gesundheitsberufe dar. Kürzlich wurde die ICF vom World Health Assembly verabschiedet. Damit sind alle Mitgliedstaaten der WHO aufgefordert, die ICF zu implementieren. Wenn ein bio-psycho-soziales Denk-Modell in der Rehabilitation zur Anwendung kommt, ist es notwendig die Perspektive der Patienten zu berücksichtigen. Das übergeordnete Ziel dieser Doktorarbeit war die Konzeptualisierung der Patientenperspektive im Bezug zur ICF. Diese Arbeit besteht aus drei wissenschaftlichen Artikeln, die hintereinander präsentiert werden. Im ersten Artikel wurden klinische, tätigkeitsbezogene Instrumenten, die in der Ergotherapie im Bereich der Rheumatologie und Rehabilitation von Erwachsenen verwendet werden, zur ICF in Beziehung gesetzt. 7 Instrumente wurden in der Literatur identifiziert und analysiert. Nur ein Instrument, nämlich das Canadian Occupational Performance Measure (COPM), berücksichtigt die Perspektive der Patienten auf eine klienten-zentrierte Weise. Außerdem ergab die Analyse, dass alle 7 Instrumente nicht auf den Gesundheitszustand Bezug nehmen, sie sind also ethiologisch neutral. Im zweiten Artikel wurden konzeptionelle Modelle aus der Ergotherapie zur ICF in Beziehung gesetzt. 3 konzeptionelle Modelle wurden in der Literatur identifiziert. Die Analyse ergab, dass zwei Konzepte aus den Modellen nicht in der ICF abgebildet werden: ‘Erfahrung des Umgebungs-Raumes’ und ‚Gewohnheit’. Das Konzept ‘Ruhe’ stellt in der ICF eine ‚Körperfunktion’ dar und wird im Gegensatz dazu in den konzeptionellen Modellen als ‚aktive Entspannungstätigkeit’ definiert. Um die ICF in der klinischen Praxis umzusetzen, wurden ‚Comprehensive ICF Core Sets’ für verschiedene Gesundheitszustände entwickelt, zum Beispiel für rheumatoide Arthritis (ICF RA Core Set). Das ICF RA Core Set soll alle ICF Kategorien beinhalten, die für die Alltagsfunktion von Patienten mit rheumatoider Arthritis wichtig sind. Es wurde von Experten in einem strukturierten Konsensusprozess entwickelt. Dabei entstand eine vorläufige Version des ICF RA Core Set, die jetzt validiert und weiterentwickelt werden soll. Das Ziel des dritten Artikels war es, das ICF RA Core Set aus der Patientenperspektive zu validieren. Ein qualitativer Forschungsansatz wurde verwendet. 63 (83%) der ICF Kategorien auf der zweiten Ebene aus dem ICF RA Core Set wurden auch in den Interviews gefunden. 25 zusätzliche ICF Kategorien, die nicht Teil der vorläufigen Version des ICF RA Core Set sind, wurden in der Analyse der Interviews identifiziert. Die Validität des ICF RA Core Set aus der Patientenperspektive ist gegeben, jedoch sollten die zusätzlich genannten Kategorien für die Weiterentwicklung berücksichtigt werden.

Objectives: To systematically identify and compare the concepts contained in outcome measures of clinical trials on chronic ischemic heart disease, diabetes mellitus, obesity and obstructive pulmonary disease, including asthma using the International Classification of Functioning, Disability and Health (ICF) as a reference. Methods: Randomized controlled trials between 1993 and 2003 were located in MEDLINE and selected according predefined criteria. The outcome measures were extracted and the concepts contained in the outcome measures were linked by so called “linking rules” to the ICF. Results: 166 trials on chronic ischemic heart disease, 227 trials on diabetes mellitus, 428 trials on obesity and 253 trials on obstructive pulmonary disease were included. 10 different health status questionnaires were extracted in chronic ischemic heart disease, 19 in diabetes mellitus, 47 in obesity, 39 in obstructive pulmonary disease. Across conditions at least 75% (range: 75-92%) of the extracted concepts could be linked to the ICF. In diabetes mellitus and obesity the most used ICF- categories were ‘general metabolic functions’ (b540), in obstructive pulmonary disease ‘respiratory functions’ (b440) and in chronic ischemic heart disease ‘heart functions’ (b410). Conclusions: In all four health conditions the majority of studies were drug trials focusing on clinically relevant parameters and not on functioning. The ICF provides a useful reference to identify and quantify the concepts contained in outcome measures used in clinical trials.

Validation of the ICF Comprehensive Set for Patients with Low Back Pain: Background: The International Classification of Functioning, Disability and Health (ICF) is a multipurpose classification to describe functional states associated with health conditions. To ensure practicability the ICF Checklist was developed, a short form of the ICF which only contains the most important categories irrespective of the present diagnoses. Furthermore ICF Comprehensive Sets were developed which contain the most important categories concerning a specific disease. Objectives: The general objective is to examine the explanatory power of the ICF Checklist in order to explain the PHI-score and the MHI-score of the SF-36. The specific aims are 1) to explore the percentage of variance of the SF-36 parameters accounted for by the ICF categories, 2) to identify the ICF categories which explain most of the variance of the two SF-36 parameters, 3) to assess the importance of the four components of the ICF Checklist for the SF-36 parameters. Methods: Cross sectional analysis of n=200 inpatients of rehabilitation centres suffering from low back pain. The International Classification of Functioning, Disability and Health (ICF) belongs to the WHO family of international classifications. At present in the ICF the following components are included: 1) Body Functions 2) Body Structures 3) Activities and Participations 4) Environmental Factors. Patients’ health status was assessed by the SF-36 Health Survey, a generic instrument to measure health status. Analyses were focused on the two summary measures Physical Health Index Score (PHI-score) and Mental Health Index Score (MHI-score). Statistical Analysis was conducted in four steps: In step 1 a first selection of potential predictor variables of health status was performed by the use of descriptive statistics. Analysis of regression in step 2 was conducted for each component of the ICF. In step 3 the variables selected in the four analyses of regression in step 2 were integrated into one multiple linear regression model. In the fourth step the model constructed in step 3 was verified and optimized. Finally three control variables were included into the model (gender, age and number of concomitant diseases). Results: The first model accounts for 44.6% of the variance of the PHI-score with F= 16.36 (p

ABSTRACT Backgroud: The World Health Organization Disability Assessment Schedule II (WHODAS II) is a new measure of functioning and disability that is conceptually compatible with the International Classification of Functioning, Disability, and Health (ICF). In contrast to other measures of health status, the WHODAS II is based on an international classification system, it is designed to be applicable across different cultures, and it treats all disorders at parity when determining the level of functioning. Objective: The general objective of this study is to investigate whether the WHODAS II – German version – is a useful instrument for measuring functioning and disability in patients with musculoskeletal conditions, cardiovascular and general internal conditions, stroke, breast cancer and depressive disorder. Specific objectives are to assess its psychometric properties reliability (internal consistency, Cronbach's Alpha), validity (factor analysis of dimensionality, convergent validity, discriminant validity), and sensitivity to change (effect size and standardized response mean), to determine to what extent the WHODAS II correlates with a traditional generic instrument for measuring Health Related Quality of Life, the SF-36, and to define its sensitivity to change after a rehabilitative intervention in relation to that other instrument. Methods: Patients with musculoskeletal conditions, cardiovascular and general internal conditions, stroke, breast cancer and depressive disorder participated. The patients completed the questionnaires WHODAS II and SF-36. After a rehabilitation treatment the same patients completed these questionnaires again in order to assess sensitivity to change. Analyses of measurement properties were conducted. Sensitivity to change was calculated by the effect size (ES) and standardized response mean (SRM). Results: Mean score on the WHODAS II is 21.98 (SD 14.32) for musculoskeletal conditions, 18.47 (SD 15.32) for internal conditions, 38.72 (SD 24.79) for stroke, 23.84 (SD 16.61) for breast cancer, and 44.56 (SD 18.95) for depressive disorder. High reliability is obtained. For the most part, the results of the scale replication confirm the determined six domains of the questionnaire. For the domain Activities, a clear distinction between work und household activities is apparent in both musculoskeletal and internal conditions. The correlations found in comparison to the SF-36 indicated that the WHODAS II (German version) measured indeed the expected constructs. The effect sizes of the WHODAS II Total Score range from 0.163 to 0.687 depending on the subgroup; effect sizes of the SF-36 summary scores from 0.025 to 1.395, respectively. In terms of patients reporting an improvement of general health status, effect sizes are accordingly higher (0.220 to 0.915 for the WHODAS II; 0.083 to 2.023 for the SF-36). Conclusion: The WHODAS II (German version) is a useful instrument for measuring functioning and disability in patients with musculoskeletal diseases, internal diseases, stroke, breast cancer and depressive disorder. It is reliable and valid and shows similar sensitivity to change scores as the SF-36 in the accordingly subscales.