The essence of functioning in sleep disorders [Elektronische Ressource] : development of a core set of categories of the international classification of functioning, disability and health (ICF) / vorgelegt von Felix Gradinger

Felix Gradinger

Sujets

• Gesundheit

Informations

• Publié par: ludwig-maximilians-universitat_munchen
• Publié le: 01 janvier 2011
• Nombre de lectures: 11
• Langue: English
• Poids de l'ouvrage: 5 Mo

Extrait

Aus dem Institut für Gesundheits- und Rehabilitationswissenschaften der
Universität München


Kommissarischer Direktor: Prof. Dr. Dennis Nowak







The Essence of Functioning in Sleep Disorders -
Development of a Core Set of Categories of the International
Classification of Functioning, Disability and Health (ICF)








Dissertation
Zum Erwerb des Doktorgrades der Humanbiologie
An der Medizinischen Fakultät der
Ludwig-Maximilians-Universität München





Vorgelegt von


Felix Gradinger


aus


Villingen-Schwenningen


2011



Mit Genehmigung der Medizinischen Fakultät
der Universität München



Die Dissertation ist vom Promotionsausschuss gemäß Promotionsordnung
angenommen worden





Berichterstatter: PD Dr. Alarcos Cieza


Mitberichterstatter: Prof. Dr. Axel Steiger

Prof. Dr. Christoph Lauer





Dekan: Prof. Dr.med. Dr.h.c. Maximilian Reiser, FACR,
FRCR



Tag der mündlichen Prüfung: 14.01.2011



Executive Summary

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.



Zusammenfassung

Diese Doktorarbeit sucht die Frage nach der Essenz der gelebten Erfahrung von
Menschen mit jeglicher Art von primärer Schlafstörung im Hinblick auf
Funktionsfähigkeit, Behinderung und Gesundheit zu beantworten. Das
übergeordnete Ziel ist dabei die Entwicklung einer ersten Version von
Kerndatensätzen von Kategorien der Internationalen Klassifikation für
Funktionsfähigkeit, Behinderung und Gesundheit (ICF) in einem auf Evidenz und
Konsens basierenden Prozess. Zu diesem Zweck wurden vier separate Studien
durchgeführt die verschiedene Perspektiven erörtern (Forscher, Klinik, Patient,
Experte) und deren Resultate als Entscheidungsgrundlage für die ICF Core Sets für
Schlafstörungen auf einer internationalen Konsensuskonferenz verwendet wurden.
Die vom Prüfling eigenverantwortlich durchgeführten Studien und
Entwicklungsschritte entsprechen demnach einer kumulativen Dissertation aus fünf
Einzelpublikationen (1 Systematischer Literaturbericht, 2 Patientenstudien, 1
Expertenbefragung, 1 Konferenzergebnisse).

Content



1. Introduction p. 1


2. Researcher perspective:
Systematic review and content comparison p. 13


3. Clinical perspective:
Empirical, cross-sectional study p. 51


4. Patient perspective:
Qualitative Study p. 73


5. Health professional perspective:
Expert Survey p. 104


6. ICF Core Sets for Sleep Disorders:
Consensus Conference p. 131



The essence of functioning in sleep disorders 1. Introduction
Background
Sleep is a universal human need, about a third of our lives we spent asleep. Sleep
and sleep related disorders therefore play an important role in relation to
health. The International Classification of Sleep Disorders ICSD-2 (1) identifies six
distinct fields of sleep disorders with over eighty different diagnoses. The six distinct
fields comprise insomnia, sleep related breathing disorders, hypersomnias, sleep
related movement disorders, circadian rhythm sleep disorders, and parasomnias,
whereas the first four are the most frequent.
Involuntary naps, sleep attacks and drowsiness are hallmarks of excessive daytime
sleepiness (EDS), a consequence common to the vast majority of patients with a
sleep disorder (2-4).
However, not only the prevalence rates, diagnoses and symptoms are relevant when
sleep disorders are described but also how they manifest in the lived experience
of persons with sleep disorders. We know that sleep disorders also extend to
health-related aspects of this lived experience. Especially, poor performance at work
or school, disruption of family life, and frequent accidents (5) and the impact of these
consequences on quality of life (6), the work environment, economy and health care
expenditure are considerable (7-9).
The recognition of the importance of systematically assessing symptoms, problems
in functioning and quality of life to optimize the management of patients with sleep
disorders is increasingly influencing the clinical practice and research in the field of
sleep medicine (10-17). Irrespective of the clinical context and the health-care
situation in which sleep disorders manifest, an in-depth understanding, systematic
consideration and solid description of the whole range of functional problems
associated with sleep disorders are necessary.
The classification systems relevant to sleep medicine like the Diagnostic and
Statistical Manual of Mental Disorders (DSM-IV)(18) and the ICSD-2 seek to give
credit to the important impact on a person’s daytime functioning.
Both classifications use operational and broad definitions of problems in functioning
as diagnostic criteria of the health conditions they seek to capture. Looking at
insomnia as an example, the DSM-V uses the expression of ‘causing significant
distress or daytime impairments in social, occupational or other sectors of daily life’
without further specification, whereas ICSD-2 captures the functioning properties and
essential criteria of insomnia in nine different ‘forms of daytime impairment’.
1 The essence of functioning in sleep disorders 1. Introduction
It is therefore important to specifically define those problems in functioning and
moreover to do so for all sleep disorders. The International Classification of
Functioning, Disability and Health (ICF)(19) offers a globally agreed-on framework for
a more detailed and comprehensive understanding of the components of
health and health-related states. It thereby complements classification systems like
th
the International Classification of Diseases (ICD-10 revision)(20) or DSM-V and
ICSD-2. It therefore seems an adequate tool to systematically and comprehensively
explore the essence of the lived experience of sleep disorders. The ICF framework is
based on a bio-psycho-social model of health and provides added value to the
conceptualization of quality of life by including codes for the component
environmental factors (21).
ICF was approved and unanimously endorsed by all member states at the 54th
World Health Assembly in May 2001. The ICF and its model achieve a synthesis and
provide a coherent view of the different perspectives of functioning and disability from
the biological, individual, and social perspectives. Thus, based on the ICF, the
management of functioning and disability requires a comprehensive approach that
not only targets aspects intrinsic to the person but also aspects of the environment,
and requires actions be taken across sectors that include health, labor, education
and social-affairs.
The model identifies three components of the dimension functioning, namely body
functions and structures, activities, and participation. Problems or difficulties in these
components that represent disability are called impairments, activity limitations, and
participation restrictions. Functioning and disability are both affected by interactions
between health conditions and contextual factors (environmental and personal).
The ICF consist of more than 1400 categories to describe patient’s functioning,
disability, and health. This project seeks to answer the question of what are the
categories of functioning in ICF that essentially address sleep disorders.
These will be used in combination with other diagnostic classifications such as ICD-
10, DSM-V or ICSD-2 to describe problems in functioning as an addition to the
diagnostic criteria. These sets of categories relevant to persons with sleep disorders
are called ICF Core Sets. The overall objective of this doctoral project is therefore the
development of a first version of ICF Core Sets for Sleep Disorders in an
evidence- and consensus-based