Identification of aspects of functioning, disability and health relevant to patients experiencing vertigo: a qualitative study using the international classification of functioning, disability and health

Vertigo and dizziness are among the most common health problems in medical practice [1‐5]. Vertigo and dizziness include both consequences of disease as well as definable disease entities such as benign paroxysmal positional vertigo, Meniere’s disease, or vestibular migraine. Irrespective of the various causes and underlying health conditions, vertigo and dizziness have significant impact on functioning and overall quality of life of the affected individuals To give some examples, the most common peripheral-vestibular disorder benign paroxysmal positioning vertigo – which is also the most frequent type of vestibular disorder – causes brief rotatory vertigo attacks, mainly triggered by rapid head movements, e.g. when turning around in the bed or lacing shoes. Central-peripheral disorders, which may be caused by brain ischemia, multiple sclerosis, or other permanent or transient brain lesions, can make vertigo attacks lasting from minutes to even weeks [6]. In addition, vertigo and dizziness are a considerable burden to economy and health care [4, 7, 8].

Precondition of effective management and treatment of potentially disabling conditions like vertigo is – besides careful diagnosis of the underlying condition –the assessment of outcomes which are relevant to the patient. This is not only important to monitor treatment effects but also to set goals and to plan therapy [6].

As summarized by Morris et al. [9] outcome measures in vertigo vary by the entities they are addressing,, such as subjective experience of disability or signs and symptoms. Most of them reflect either the patients’ or health professionals’ experience. As an example, the frequently used Dizziness Handicap Inventory [10] addresses the patients’ experience of the consequences of vertigo on daily living.

Most outcome measures are developed and validated on the basis of empirical findings or professional experience [11]. However, none of them refer to a common theoretical framework. A theoretical framework is fundamental for defining an outcome measurement and helps to ensure that the whole potential spectrum of issues is reflected [12].

In addition to the lack of theoretical foundation there is still no agreement on standards used to measure outcomes in patients with vertigo. This is illustrated by a recently published Cochrane Review in the field of vestibular rehabilitation which noted 15 different outcome measures of patients’ complaints in 21 studies [13].

To address both these issues, the Integrated Center for Research and Treatment of Vertigo, Balance and Ocular Motor Disorders (IFB^LMU) at the Ludwig-Maximilians-Universität in Munich set up a project that aims to develop an international standard for the description of functioning and disability in patients with vertigo and dizziness based on the International Classification of Functioning, Disability and Health (ICF). With the ICF, which is part of the family of international classifications of the World Health Organisation (WHO), there is a common theoretical framework for describing and measuring health and disability. The ICF models the individuals' functioning and health as a complex interaction between a health condition and contextual factors. Additionally, the ICF classifies domains of functioning which are encountered in human life: Body structures and functions, activities and participation, along with their contextual Personal and Environmental Factors. The ICF classification contains more than 1400 hierarchically organized categories which describe the components of the ICF model in detail up to four levels (see Figure 1). One major goal of the ICF is to record and organize a wide range of information about health and health related states for individuals and populations. For the purpose of defining the contents of a comprehensive assessment, the ICF provides a universal language intended to be equally used and understood by health professionals and patients. Thus, it can be used to organize and standardize issues most relevant for patients with vertigo or dizziness while respecting patients' perspective and experiences. The ICF therefore has the potential to serve as a useful comprehensive basis to standardize health information on the individual and the population level in patient care and research [14, 15].

The development of this international standard is based on the protocol to develop ICF Core Sets [16‐18] and will therefore incorporate the perspectives of affected individuals, of health professionals, of current research as well as the epidemiological perspective.

The objective of this paper is to investigate the perspectives of patients with vertigo and dizziness on their experience of functioning and health using the ICF. Specific aims were

After 12 individual interviews from May until July 2010 saturation was reached. Characteristics of the participants are displayed in Table 3. Four hundred and seventy-one single concepts were extracted from the interviews. Those identified concepts were linked to 142 different ICF-categories describing relevant aspects of functioning in our patients. 40 of those ICF categories belonged to the component body functions, 62 to the component activity and participation, and 40 to the component environmental factors (see Table 4, 5 and 6). None of the concepts could be linked to categories out of the component body structures. Four percent of all extracted concepts could not be linked to specific ICF categories. Most of them were related to ‘personal factors’, specifically personal strategies of coping.

Besides the most prominent aspect “dizziness” which was reported by all participants, most participants (9) reported problems within “Emotional functions (b152)” including appropriateness, regulation and range of emotions. Eight participants reported problems related to mobility (including walking and related functions and driving motorized vehicles) and carrying out the daily routine. In addition, almost all participants (11) reported “Immediate family (e310)” as a relevant modifying environmental factor. The next most frequent environmental factor was “Drugs (e1101)”, which was mentioned by seven participants. The results of the analysis of all interviews are shown in Tables 4, 5 and 6.

Our study indicates that patients with vertigo or dizziness consider many different aspects of functioning and health as relevant. Aspects from the component Activities and Participation were most prominently captured, followed by aspects covering Body Functions. Various environmental and personal factors contributed to the multifaceted picture of functioning in vertigo. In our study the ICF turned out to be a useful tool to code various impairments and restrictions caused by vertigo and dizziness and to describe disease specific functioning and quality of life since the majority of concepts in patients’ statements could be linked to the ICF.

Regarding the ICF component Body Functions participants reported, apart from obvious aspects (e.g. sensations associated with hearing and vestibular functions), orientation, temperament and personality functions, confidence, motivation, emotion, sleep, appetite and exercise tolerance as relevant. It is commonly recognized that vertigo has considerable impact on quality of life, but the distinct components are often unclear. Generic instruments such as the SF-36 [26] give but a very general picture of impairment of mental functions. Anxiety and avoidance have been reported as psychological consequences of vertigo [1, 27]. Also, emotional problems seem to be associated with vertigo [28]. Depression and somatization as well as increased obsessive-compulsive attitude have been observed [29].

" “(…) It really gets me down.” (b152 Emotional functions, Pt. 6)"

" „Okay, just from the beginning, I wanted to be left alone (…) I didn’t want to go anywhere (…) And when I got such panic attacks … nervous break down… because I don’t want to go outside (…). (b152 Emotional functions Pt. 009)"

" “And at night it is like…sleeping properly… does not work any more.” (b134 Sleeping functions, Pt. 001)"

Of the ICF component Activities and Participation, 62 categories were mentioned as relevant in our study. This underlines how much the pathology interferes with daily life. The reported categories ranged from very basic activities such as watching, listening and reading to more complex items such as managing daily routine, using transportation, self-care and housework:

" “When things pass by quickly… This is what you have to avoid and you actually do avoid… Just like watching TV. I haven’t been watching TV since December.” (d110 Watching, Pt. 001)"

" “I really loved reading. At the moment I can’t really read, because I get dizzy after a little while.” (d166 Reading, Pt. 009)"

" “When you want to go by bus, you have to take a rest at the bus stop…and then you have to get in the bus fast. And you have to get out fast and again… have a rest at the bus stop. Everything gets more complicated.” (d4702 Using public motorized transportation, Pt. 011)"

" “And I am happy to reach the toilet [without a vertigo attack]” (d530 Toiletting, Pt. 012)"

" “It’s worst when I have to do homework, for example when I have to hang curtains…” (d6402 Cleaning living areas, Pt. 008)"

It is obvious that all movements and body positions that are likely to provoke attacks were reported as restricted.

" „As soon as I was standing up… upright… [vertigo attacks occurred]… then walking was really hard (…).“ (d4104 Standing, Pt. 006)"

Almost all aspects of social participation were perceived as restricted, namely personal and formal relationships, employment, leisure, sports and community life. This is in line with the work of Neuhauser and colleges who showed in a large, community based study that up to 20% of individuals with vertigo avoid leaving the house [7]. Dizziness is known to impede activities of daily life [30] and to interfere with workplace activities [1]. Because attacks of vertigo are mostly uncontrollable and unpredictable, many patients suffer from the mere anticipation of the attack [31] which may be as restricting as the pathology itself [10].

" „Okay…but… now there is the vertigo (…) when I am standing in front of my customers, or employees… swaying… That doesn’t work!” (d730 Relating with strangers, d7401 Relating with subordinates, Pt. 009)"

" „[At work] I have to prepare these trolley tables all the time. Ist a permanent.. standing, bending, preparing… arround these trolleys… Then bringing them allover the building… four stories… I can’t imagine that I could handle this at the moment.” (d850 remunerative employment, Pt. 001)"

" “I would prefer going to work. But my ENT-doctor says that it’s too risky because of the spells… vomiting, high blood pressure, panic attacks,…” (d850 Remunerative employment, Pt. 001)"

Environmental Factors were reported as interfering and interacting with functioning. Among those were factors of the natural and built environment such as sounds, vibrations, climate, temperature, population density and architectural design. To give an example, paroxysmal positioning vertigo is suspected to be associated with temperature variation and air pollution [32].

" „Yes…, in daily life… crowdy places… where a lot of people… and noisy…This is what I cannot tolerate at the moment.” (e2500 Sound intensity, e2151 Population density, Pt. 001)"

" „And as I’ve said before, when I’m walking, strolling in the sun, I feel that the vertigo is even more extreme.” (e225 Climate, Pt. 008)"

Likewise, family, friends, neighbors, colleagues and their attitudes were reported as relevant environmental factors. They can act as facilitators or barriers for the individual affected by vertigo, since vertigo may change social roles and behaviors, also towards others [33].

" “I have two daughters. They give me a lot of support. And my husband.” (e310 Immediate family, Pt. 001)"

" „They, the people next to me, or acquaintances, too… When we went out for diner or to cinema… They knew that I suffer from vertigo attacks and that gave me the freedom… when I recognized: Oh! There is.... Then I could call them to help me: „Bring me to my car“(…).” (e420 Individual attitudes of friends, Pt. 012)"

In general, the ICF turned out to be a useful tool to describe the situation, determinants and consequences of vertigo. Only few concepts reported by the patients could not be coded with ICF categories. Most of them were related to personal factors, mostly coping strategies. As an example, some patients reported to visit only places which are save if a vertigo attack occurs, such as buildings that have staircases with handlebars, or places where they can lay down during a vertigo attack. Other patients reported to schedule trips or shopping more carefully. Coping strategies and resilience are reported in the literature as major determinants of symptom severity [34].

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. While there are generic and disease-specific instruments to measure Quality of life which do encompass several of the aspects found in our study, the ICF offers a broader perspective and a full understanding of all the factors involved at individual and health care level. The ICF has, therefore, a great potential to comprehensively describe functioning in vertigo for the assessment of burden of disease and treatment success. The results of this study will contribute to developing standards for the measurement of functioning, disability and health relevant for patients suffering from vertigo.