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Journal of Vestibular Research 23 (2013) 305–312 DOI 10.3233/VES-130474 IOS Press

The vestibular activities and participation measure and vestibular disorders1 Alia Alghwiria,∗ , Ahmad Alghadirb and Susan L. Whitneyc,d a

Department of Physical Therapy, Faculty of Rehabilitation Sciences, The University of Jordan, Amman, Jordan Department of Rehabilitation Sciences, College of Applied Medical Sciences, King Saud University, Riyadh, Saudi Arabia c Department of Physical Therapy, School of Health and Rehabilitation Sciences, University of Pittsburgh, Pittsburgh, PA, USA d Rehabilitation Research Chair, King Saud University, Riyadh, Saudi Arabia b

Received 8 October 2012 Accepted 20 February 2013

Abstract. Vestibular disorders are commonly reported health conditions that lead to debilitating consequences. Activity limitations and participation restrictions are the main disabling consequences of vestibular disorders. Measuring activities and participation in people with vestibular disorders has been a challenge due to the absence of specialized outcome measures that quantify activities and participation based on a standardized framework such as the International Classification of Functioning, Disability and Health (ICF). The Vestibular Activities and Participation (VAP) questionnaire was developed to quantify activity limitations and participation restrictions in people with balance and vestibular disorders. Of the 34 items included in the VAP, 29 (85%) of the items had at least 25% or more of the respondents report that they had moderate to severe difficulty and 10 items had 40% or more of the participants report that they had difficulty with the activity or participation item. The psychometric properties of the VAP were examined and demonstrated very good reliability and validity in persons with balance and vestibular dysfunction and may be helpful in identifying activity and participation limitations. Keywords: ICF, vestibular, disability, activities and participation, measures

1. Introduction Vestibular dysfunction is a common condition among adults, especially in people above 75 years of age [1]. Around 34.5% of persons 40 years and older in the United States report dizziness [1]. Vestibular disorders contribute to patients’ disability [34]. As a result of the disabling consequences of vestibular disorders, patients avoid a wide range of activities, environ1 This paper was presented at the Session: Sensory Transduction at the 8th Symposium on the Role of the Vestibular Organs in Space Exploration, April 8–10, 2011, Houston, TX, USA. ∗ Corresponding author: Alia Alghwiri, Department of Physical Therapy, Faculty of Rehabilitation Sciences, The University of Jordan, Amman, Jordan. E-mail: [email protected].

ments and situations such as travel, crowds, heights, and stress for fear of provoking symptoms [34,56,57]. Such avoidance behaviors can affect the individual’s ability to promote adaptation, since movement is necessary for adaptation. By avoiding situations, the person with a vestibular disorder may be contributing to greater disability [59]. Many basic and essential activities of daily living can become unsafe or difficult to perform such as negotiating stairs, climbing ladders, driving, and shopping because of fear and avoidance behaviors [56,59]. Gradually, persons with vestibular disorders may become limited in essential daily activities and become socially isolated. In order to identify patients’ functioning and disability, a battery of valid and reliable measures should be used to identify their functional limitations. Sev-

c 2013 – IOS Press and the authors. All rights reserved ISSN 0957-4271/13/$27.50 

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eral vestibular scales and outcome measures have been developed in an attempt to quantify the disabling effect of vestibular disorders on a person’s daily life. The most common measurements used to assess functional limitations and disability in people with vestibular disorders are the Dizziness Handicap Inventory (DHI) [27], the Vertigo Handicap Questionnaire (VHQ) [58], the Activity-specific Balance Confidence (ABC) Scale [43], the UCLA Dizziness Questionnaire [25], the Situational Characteristics Questionnaire [26], the Activity of Daily Living Questionnaire (ADLQ) [7], and the Vestibular Disorders Activities of Daily Living Scale (VADL) [14]. The above measurement tools have good psychometric properties; however, they are not based on a widely accepted standardized classification such as the International Classification of Functioning, Disability and Health (ICF) [53]. In addition, the previously mentioned measures have a variety of items from different components of the ICF. As a result, the measures fail to capture the effect that vestibular disorders have exclusively on activity limitations and participation restrictions as described in the ICF [2,53]. The ICF is a multipurpose classification system for obtaining and maintaining information regarding a person’s involvement in different activities of daily living (ADLs) with his/her health condition (diseases, disorders, and injuries) [53]. The ICF was officially endorsed by all 191 World Health Organization (WHO) member states during the fifty-fourth World Health Assembly in 2001 (Resolution WHA 54.21). It was developed to provide an easy and standard language for reference, description, and classification of health and its related domains, making the communication between the users across the world and disciplines easy [47]. The goal of the ICF was to improve the understanding of the concept of disability as experienced by the patient [28]. The ICF attempts to describe the dynamic process of human functioning as it relates to the person’s health and contextual factors [29]. The concepts contained within the ICF encourage health care providers and researchers to adopt a new approach towards health and disability. The authors of the ICF textbook [53] describe disability as not just a result of a health condition (diseases, disorders, and injuries) but also as its interaction with the patient’s individual, biological and physical environment, the services available in and the attitude of the society towards the disability [15,28]. Newly developed capacity and performance’ scales, designed to measure activities and participation of the patient, make the ICF not

only a classification system but also assist in providing a description, quantification, and evaluation of disability at an individual and community level [4]. In the years since the existence of the ICF, the ICF has been used widely across disciplines and in various health conditions (diseases, disorders, and injuries) [47]. The concepts within the ICF have already been used in fields like HIV/AIDS [39], breast cancer [21], geriatrics [18], and various chronic conditions [13]. The ICF has also shown to be useful for neurological conditions in acute and post-acute care settings [17, 45] and in multidisciplinary rehabilitation settings for nurses [37] and physical therapists [23]. The ICF has also changed the way in which data related to disability is obtained, classified and reported [28]. Practice guidelines for orthopaedic physical therapy management of patients with musculoskeletal impairments in general [16] and for heel pain-plantar fasciitis [33] also have been written to guide clinical practice using the ICF as the conceptual model. Although the ICF has been widely used and supported, there are some authors that criticize the ICF. Researchers have identified difficulties within its structure due to missing, overlapping and limited codes (e.g. for Pain) [24]. In addition, Alghwiri and colleagues reported that walking with head movements was an important activity for persons living with balance and vestibular disorders that was not included in the ICF [2]. The use of qualifiers and the lack of classification of personal factors are other reported problems [28,44]. Others have suggested that the ICF needs additional description of the difference between activities and participation [6], which is one of the main requirements for its use in research and practice [12,29].

2. The ICF: History and development Before the development and acceptance of the ICF by the WHO, disability had many definitions, models and methods that recorded disability but none were based on the functional state of the patient [19,32,50]. There was a need for a classification system that could be used internationally due to the challenges faced by the clinicians and researchers across the world working together with persons with disability. The international group that developed the ICF worked on defining and classifying disability in terms of activities and participation items. One of their goals of developing the ICF was to provide clinicians and health care administrators with a standard language and framework for the

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development of instruments for practical use in public health for both patient assessment as well as research. Instruments developed from the concepts within the ICF would be applicable to an individual or a population experiencing the same or variety of health conditions (diseases, disorders, and injuries) [30]. The ICF has replaced the International Classification of Impairment, Disability and Handicap (ICIDH) which was published in 1980 [5]. The ICIDH measured the consequences of disease on the patient [24]. The WHO developed the ICF to provide a common framework to measure and classify the functional status of an individual or population as a whole at different levels of health condition (diseases, disorders, and injuries) [48]. The change from the ICIDH to the ICF limits the use of the terms impairment, disability and handicap in the context they were formerly used and introduces more descriptive terms such as body functions and structures, participation , personal factors, environmental factors and activity plus health condition as they affect the person’s abilities [30]. Acknowledging the variety of cultures worldwide, different people with same health condition might be affected differently in their own environment. The ICF takes care of this within the category termed contextual factors [4]. In persons with vestibular disorders, sound (ICF category e250) and light (ICF category e240) are environmental factors within the environmental factors component of the ICF that can affect their perceived dizziness differently depending on where the person lives and works [8,9]. Besides being relevant across cultures, the ICF is also applicable to various age groups and genders, assessing the individual on a broader level [4]. In order to address children in the context of their stages of development and the environments in which they live, the WHO has also created a manual by adding several concepts to the original ICF book that are related to childhood and youth (ICF Children and Youth) [54]. The ICF is based on the assumption that the components of body structure and function, activities and participation, and personal plus environmental factors interact with each other. According to the ICF, activity is defined as execution of a task or action by an individual and participation is defined as involvement in life situations [53]. Rather than their actual impairment, patients are more worried about how they will cope with their activities of daily living and adjust to their environment [51]. In persons with dizziness or vertigo, their concerns often revolve around family and societal roles that are affected by the vestibular disorder [38].

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Fig. 1. Interactions between the components of the WHO International Classification of Functioning, Disability and Health (ICF).

Thinking about how well people are living is a large paradigm shift from the traditional model of thinking about diseases. The activities and participation components of the ICF are the basis of disability. According to the ICF, disability is the result of interactions between the body impairments resulting from the health condition(s) (diseases, disorders, and injuries) and the contextual factors including environmental and personal factors [15,46]. The interactions between body impairments and contextual factors are dynamic in nature, which changes with time. The ICF, with its unique model of disability (Fig. 1), captures the interactions between body impairments and contextual factors that eventually can be used to assess the degree of disability in any disease or disorder. In persons living with vestibular disorders, the ICF is a very useful classification in understanding the complex interactions between a vestibular condition and environmental factors and how these interactions contribute to a patients’ level of disability. As people with vestibular disorders improve, the personal and environmental factors that affect their function can change. When patients with small acoustic schwanomas post tumor removal begin to move their head more and open their eyes, they are more affected by light and dizziness than they were immediately post surgically because of the increased input to the vestibular apparatus that is receiving no or a “different” signal from the surgical side. Thus, environmental factors can affect the patient differently as the disease and the person adapts to their vestibular disorder [41]. Health care providers and researchers in rehabilitation are working to reduce the number of persons with disabilities and to improve their functioning and participation to make their life more fulfilling [46]. As the ICF focuses on human functioning, measures are being

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constructed worldwide based on the constructs within the ICF to better describe cross-culturally how people live with their health condition.

3. Measuring activities and participation in people with vestibular disorders Despite the vast use of the ICF in various health conditions, literature using the ICF for persons with vestibular disorders is limited [2,31,38]. Persons with vestibular disorders can have either peripheral and/or central vestibular disorders [10] as a result of the dysfunction in the body systems leading to limitations in the ability of the patient to perform normal activities and participation in their societal roles. Vestibular disorders affect patients’ body functions as well as activities and participation within the patients’ environmental context. However, activities and participation components are prominently reported to be restricted in patients with vestibular disorders [38]. Activities and participation outcome measures developed based on the clearly defined concepts included in the ICF would help health care providers to better understand patient outcomes [3,53]. Therefore, many tools have been developed that are disease specific based on the ICF framework especially in the activities and participation components since measuring activities and participation is a challenging task. Many generic as well as disease-specific instruments were developed to examine activities and/or participation based on the ICF [20,40,42,49,52,55] or on its previous version, the ICIDH [11,19,22]. The ICF has gained worldwide acceptance as a standardization of health care language to classify health conditions. By utilizing the language and structure of the ICF, a tool can be developed that can be used across cultures, conditions and age groups. Therefore, recently the Vestibular Activities and Participation (VAP) questionnaire was developed as a measure of activity limitations and participation restrictions for patients with vestibular disorders based on the ICF [3].

4. The Vestibular Activities and Participation (VAP) questionnaire: Needs and advantages The VAP questionnaire was developed as a selfadministered measure to fill a void in tests and measures within the realm of the activities and participation component of the ICF [3]. In patients with vestibu-

lar disorders, there are several self-report measures currently being utilized to evaluate a combination of body function and activities/participation [7,14,25,27, 43,58], however, there are no measures that address how vestibular disorders in particular limit activities and restrict participation exclusively [2]. As vestibular disorders can severely limit the ability and willingness to participate of those affected [34,56, 59], there was a need for the development of a short scale to evaluate the extent of limitations in activities and/or participation. Through the use of the VAP, researchers and clinicians might gain an improved understanding of patients’ problems and needs. As with any measurement tool, pre- and post-testing with the VAP following therapy or medical interventions, as well as pre-and post-surgically, will allow health care professionals to determine the effectiveness of their interventions. Based on the worldwide accepted language and framework of the ICF, the VAP was developed to evaluate the activities and participation component of the ICF. The VAP was created for persons with vestibular disorders. Utilizing eight other self-report measures commonly used in vestibular rehabilitation and expert opinion, items were chosen that represent only the activities and participation section of the ICF. Following the selection of items, the Delphi method was used to elicit the opinions of experts in the field of vestibular disorders from other countries and disciplines. Through two rounds and review by the researchers, 34 items were agreed upon that appeared to be relevant within the activities and participation component of the ICF. These items were then used to create the VAP [3]. Following its development, the VAP was then administered to 58 patients at a tertiary care clinic for patients with vestibular disorders. In order to determine the validity of the VAP, the World Health Organization Disability Assessment Schedule II (WHODAS II) [55] and the Dizziness Handicap Inventory (DHI) [27] were used due to their strong psychometric properties. There was a strong correlation between the VAP and the WHODAS II. There was a moderate to strong correlations between the VAP and the DHI total and subcategory scores. As stated previously, the development of the VAP was based upon, and utilizes, the language of the ICF that will allow the VAP to be translated into other languages and benefit researchers, therapists and patients worldwide. Of the 34 VAP items, 29 of the items were reported to be either moderately or severely affecting the par-

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Table 1 The frequency of people with vestibular disorders who reported difficulty doing tasks in the Vestibular Activities and Participation (VAP) measure No VAP items

1 2 3

4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24

25 26

27 28 29 30 31 32 33 34

No Mild Moderate Severe Unable NA Percent Valid difficulty to do Mod-Severe responses Responses (n = 58) Focusing attention (concentration, remembering) 14 13 23 5 3 0 48% 58 Carrying out your daily routine (managing and com11 15 20 7 5 0 47% 58 pleting your daily routine) 13 13 14 11 5 2 47% 56 Handling stress and other psychological demands (driving a vehicle during heavy traffic or taking care of many children) Lying down (get into or out of bed) or turning over in 17 12 19 9 0 1 49% 57 bed Sitting from lying down 12 21 18 7 0 0 43% 58 Moving from sitting to standing 13 18 15 11 1 0 45% 58 Bending over or picking up objects from the ground 9 18 16 12 3 0 48% 58 Lifting and carrying objects 18 18 8 8 1 5 30% 53 Reaching overhead and down 10 20 19 7 2 0 45% 58 Walking short distances (e.g. around the house, outside 24 15 12 7 0 0 33% 58 to a nearby car) Walking long distances 16 16 9 5 10 2 25% 56 Walking on different surfaces (icy sidewalks, uneven 11 13 17 9 5 3 47% 55 surfaces) Walking around obstacles: in crowds, across parking lot 18 15 12 12 0 1 42% 57 Climbing (up and down stairs, elevator, escalator) 15 16 11 11 3 2 39% 56 Running 9 5 6 3 15 20 24% 38 Moving around within the home (e.g. moving between 15 24 13 5 1 0 31% 58 rooms or from floor to floor) Moving around within buildings other than your home 17 18 16 6 0 1 39% 57 Moving around using equipment (e.g. cane, walker, 8 0 4 1 0 45 39% 13 wheelchair) Using transportation (traveling using private or public 18 15 11 4 2 8 30% 50 transportation-being a passenger) Operating a vehicle: driving a car or riding a bicycle 18 16 11 3 8 2 25% 56 Washing whole body (bathing in a bathtub or shower) 25 16 13 3 1 0 28% 58 Shopping 17 19 11 7 4 0 31% 58 Preparing meals (planning, organizing, cooking and 20 18 11 3 4 2 25% 56 serving meals for oneself and others) 13 22 12 5 4 1 30% 56 Doing housework: washing and drying clothes and garments; cleaning cooking area and utensils; cleaning living area; and disposing of garbage Taking care of animals (e.g. feeding, cleaning and exer14 11 8 2 2 21 27% 37 cising pets or farm animals) 12 9 9 0 4 24 27% 34 Assisting household members with self-care (e.g. eating, bathing, dressing) and/or assisting household members in movement (e.g. moving outside the home) Family relationships 29 16 7 4 1 1 23% 57 School education (engaging in all school related re9 4 1 2 1 41 18% 17 sponsibilities and privileges) Vocational training (engaging in all activities at a trade 7 1 1 0 1 48 10% 10 school) Higher education (engaging in all the activities of ad6 5 1 2 1 43 20% 15 vanced educational programs beyond high school) Maintaining a job (e.g. remunerative employment, non12 10 7 2 10 17 22% 41 remunerative employment) Recreation and leisure (engaging in any form of play, 13 18 13 5 8 1 32% 57 recreational, or leisure activities) Sports (engaging in competitive and formal or informal 8 4 8 4 9 25 36% 33 organized games, performed alone or in a group) Socializing (e.g. visiting friends or relatives, going to 13 23 11 7 2 2 32% 56 dinner, movies, or parties)

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ticipants’ ability to participate in activities by at least a 25% of the respondents (see Table 1). In addition, there were 10 VAP items in which 40% of those who answered that item had moderate to severe difficulty performing the activity. The 10 items most frequently reported as being difficult to perform included: lying down, focusing attention, bending over, carrying out daily routine, handling stress and other psychological demands, walking long distances, moving from sitting to standing, reaching down or overhead, sitting from lying down, and walking around obstacles.

5. The Vestibular Activities and Participation (VAP): Development process Initially, a list of potential activities- and participation-related items was generated from current validated and reliable instruments. These instruments included the DHI [27], the VHQ [58], the ABC Scale [43], the UCLA Dizziness Questionnaire [25], the ADLQ [7], and the VADL [14], the Prototype Questionnaire (PQ) [35], and the Vestibular Rehabilitation Benefit Questionnaire (VRBQ) [36]. These items were then linked to the ICF. The Delphi method was utilized for the development of the VAP. Developed in the 1950s, the Delphi method is a technique utilized for gathering information from multiple experts in a field of study without need for the experts having to meet face-to-face. A researchergenerated list of inclusion items from the previously mentioned questionnaires was sent to 23 experts in the field of vestibular disorders, including physical therapy, neurology, occupational therapy, otolaryngology, audiology and psychiatry. Of the 23 experts, 17 agreed to participate in this portion of the study. The Delphi method was conducted in two separate rounds. In the first round, the experts were asked to rate, on a 4-point verbal scale, whether or not an indicated item should be included in the VAP and were also given the opportunity to suggest any other items that should be included. In the second round, a spreadsheet was distributed to each participant, indicating a percentage of agreement among experts for each item included in the first round, as well as the experts’ response for each item. The experts were given the opportunity to review the spreadsheet and make any revisions to their previous recommendations. Based upon the author’s decision, items having an agreement rate of 70% or higher were included in the creation of the VAP.

To address the reliability of the VAP, test-retest scores were excellent, with an ICC = 0.95 and 95% confidence interval = 0.91–0.97 [3]. Between the WHODAS II and the VAP, there was a strong correlation, indicating concurrent validity of the items of the VAP with the WHODAS II [3]. The VAP was also validated against the DHI, which again indicated a moderate to strong correlation. Additionally, determining the responsiveness of the VAP is an ongoing project. Others have started to investigate the elements of the ICF that relate to persons with vestibular disorders by conducting structured patient interviews to determine how their concerns map to the ICF [38]. The use of the ICF in persons with vestibular disorders is growing and investigators in the United States and Germany are already using the ICF to quantify functional limitations in persons with vestibular disorders [2,3,38]. Although the development and validation of the VAP provided a measure that is based on the ICF with high psychometric properties some limitations exist. In the validation process of the VAP, it was unclear as to why 9 items (26%) had more than 15 people (more than 26%) who checked off not applicable (NA) as a response (see Table 1). These 9 items included running, moving around, using equipment, taking care of animals, assisting household members, going to school (school education, vocational training or higher education), maintaining a job, and sports activities. The Delphi experts felt that these 9 items were important but may not relate to people across the life span. It is unlikely that all older adults continue to participate in sports, going to school, maintaining a job, or running as part of their daily routine, suggesting that the VAP may need to be modified based upon the age or health condition of the respondent.

6. Summary The ICF provides clinicians with a common foundation for all medical professionals in which to study and discuss concerns world-wide in persons with vestibular dysfunction. Use of the common language developed by the WHO is designed to enhance communication and improve care worldwide for persons with vestibular disorders. The development of the VAP made the use of the ICF in clinical settings for persons with vestibular disorders more feasible and practical.

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Acknowledgments Authors extend thanks to the Research Center, College of Applied Medical Sciences, King Saud University and Deanship of Scientific Research, King Saud University for the support of this research, the University of Pittsburgh Department of Physical Therapy, Dr. Joseph M. Furman for referring the subjects, and also Corrine Congleton, Cindy Kapelewski, RN, and Joseph Skledar for their help with recruitment of patients in the validation of the VAP measure.

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The vestibular activities and participation measure and vestibular disorders.

Vestibular disorders are commonly reported health conditions that lead to debilitating consequences. Activity limitations and participation restrictio...
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