56.1 Introduction

In recent years, there has been growing interest within the medical community to examine patient-reported outcome measures (PROMs) in order to move beyond the provider’s viewpoint and assess health care experience from the patient’s perspective. While traditional outcome measures such as morbidity and mortality provide useful benchmarks for quality of care assessment, they sideline the patient’s perception of health care and their experience with system structure, the care process, and other less tangible outcomes.s. Literatur ^,​ s. Literatur The use of PROMs is particularly relevant to vestibular schwannoma (VS) and other benign diseases, where current care is directed toward treatment of symptoms, maintenance or improvement of function, and prevention of disease-related complications, rather than mortality reduction.s. Literatur ^,​ s. Literatur ^,​ s. Literatur

Under the heading of PROM are common constructs including health status, functional status, symptom experience, patient satisfaction, health-related quality of life, and well-being.s. Literatur ^,​ s. Literatur Broadly, individual PROM questionnaires can be categorized as generic versus disease specific and unidimensional (i.e., examining a single construct such as dizziness alone) versus multidimensional (i.e., examining multiple constructs, such as an instrument analyzing energy, anxiety, facial function, and dizziness domains).

This chapter focuses on reviewing validated instruments pertaining to symptom experience and functional status, while health-related quality of life assessment using multidimensional, generic, and disease-specific measures is discussed further in Chapter 60. As a foundation for this chapter, it is critical to review the differences between impairments, disabilities, and handicaps—terms that are often used incorrectly and interchangeably within health literature. Defined by the World Health Organization in 1980, impairment refers to “any loss or abnormality of psychological, physiological, or anatomical structure or function”; disability is defined as “any restriction or lack of ability to perform an activity in the manner or within the range considered normal for a human being”; and handicap is defined as “the result when an individual with an impairment cannot fulfill a normal life role.”s. Literatur To draw from an example relevant to the VS population, unilateral deafness is an impairment, the inability to localize sound is a disability, and the failure to secure a position in a particular occupation because of this impairment and disability is a handicap.

The benefit of utilizing patient self-assessment of disability and handicap for conditions such as tinnitus and headache is obvious; these are disorders that can significantly affect patient well-being, yet cannot be objectively quantified or outwardly observed. However, PROMs for conditions that can be examined and empirically quantified—facial nerve function, vestibular function, and hearing for example—still provide valuable and complementing information. For example, the Hearing Handicap Inventory (HHI) was developed because of the poor association that exists between pure-tone and speech audiometry with everyday communication and psychosocial function.s. Literatur Similarly, the Dizziness Handicap Inventory (DHI) was developed because results of vestibular testing do not adequately quantify or predict the impact of dizziness on daily life.s. Literatur

56.2 Disability and Handicap Inventories Relevant to Vestibular Schwannoma

The most common symptom-specific self-assessment inventories of disability and handicap in the VS literature pertain to hearing loss, tinnitus, dizziness, facial nerve dysfunction, and headache (Table 56‑1 ).s. Literatur ^,​ s. Literatur ^,​ s. Literatur ^,​ s. Literatur ^,​ s. Literatur ^,​ s. Literatur ^,​ s. Literatur ^,​ s. Literatur ^,​ s. Literatur ^,​ s. Literatur ^,​ s. Literatur While individual instruments vary, most contain between 15 and 30 questions, with closed set 1 to 5 Likert scale responses. In most cases, the instrument is recorded such that the score is transformed to a 0- to 100-point scale, where a higher score indicates more severe disability or more severe handicap.

56.3 Summary of Literature Evaluating Disability and Handicap in Vestibular Schwannoma

Related posts:

50 Reporting of Hearing Outcome Data for Vestibular Schwannoma 52 Hearing and Vestibular Function Loss After Radiation Treatment of Sporadic Vestibular Schwannoma 51 Natural History of Hearing and Vestibular Function in Untreated Sporadic Vestibular Schwannoma 57 Tinnitus in Sporadic Vestibular Schwannoma 59 Epidemiology and Pathogenesis of Headache in Patients with Vestibular Schwannoma 58 Dizziness in Sporadic Vestibular Schwannoma

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