Capturing what matters to people living with hearing problems (i.e., the patient perspective) is essential in hearing health care (Danermark et al., 2010,2013). This critical need was recently highlighted in the National Academies of Sciences, Engineering, and Medicine (NASEM) report entitled: Hearing Healthcare for Adults: Priorities for Improving Accessibility and Affordability (NASEM, 2016). The report states that efficient and effective hearing health care services should address hearing-related problems from both a disease- and functioning perspective (i.e., a biopsychosocial perspective) (see chapter 3).
The need for this biopsychosocial perspective of hearing problems has been recognized for a number of years (Kricos, 2000; Danermark, 2005), as has the need for an adequate diagnostic taxonomy or descriptive reference system to accommodate this. The World Health Organization’s International Classification of Functioning, Disability, and Health (ICF) is often suggested as such a reference system (Hickson & Scarinci, 2007; Gagne et al., 2009). Endorsed by previous work, the ICF perspective posits that a full understanding of a person’s hearing problem can be obtained if assessment goes beyond the biomedical approach, which focuses on impairments of auditory structures and functions, to additionally include assessment of a person’s complementary systems (e.g., visual, mental, cognitive, physical), ability to complete activities and participate in community life (e.g., communication, work), personal attributes (e.g., coping styles, comorbidities), physical setting (e.g., noise, light), and social environment (e.g., familial support) (Hickson & Scarinci, 2007; Scarinci et al., 2012; Danermark et al., 2010,2013; Granberg et al., 2014a,2014b,2014c,2014d; Alfakir et al., 2015a,2015b; Timmer et al., 2015). In other words, the ICF can potentially help professionals to balance their attention between the disease-focused biomedical perspective and a biopsychosocial perspective of the lived health of a patient, thereby acknowledging that interindividual differences can drive patients with the same degree of impairment to require and prefer different types of services or modes of service delivery.
The ICF complements the International Statistical Classification of Diseases and Related Health Problems, 10th revision (ICD-10) (International Statistical Classification of Diseases and Related Health Problems 10th Revision [ICD-10]-WHO, 2016). From an audiological perspective, this means that practitioners can use the ICD-10 to classify a person’s health conditions (HCs), and the ICF can be used to classify categories that may influence a person’s functioning- and disability levels (for examples see: Grenness et al., 2014,2015,2016; Alfakir, et al., 2015a; Alfakir & Holmes, 2017). The overarching purpose of the ICF is to provide a unified reference framework and language related to functioning, to improve assessment, management, and communication, between professionals and between professionals and patients (Bickenbach et al., 2012).
In the ICF, functioning refers to all body functions (BFs), activities, and participation of an individual; disability refers to all impairments, limitations, and restrictions herein, respectively (WHO, 2001). In addition, the ICF lists contextual factors (environmental factors [EFs] and personal factors [PFs]) that interact with these components. All components of functioning and EFs are listed in the standard terminology of the ICF and are subdivided into many chapters and categories. The ICF categories are further organized in a stem-branch-leaf scheme using interlinked levels and are denoted by unique alphanumeric codes. The letters refer to the components (b: BFs; s: body structures [BSs]; d: activities and participation [A&P]; and e: EFs), followed by 1 digit indicating the chapter (first level), followed by the code for second-level categories (two digits), and the third-level categories (one digit each). An example is provided in Figure 1.
The ICF is a generic framework for describing health and disability in all kinds of diseases or HCs. As a result, it can be too complex for use in daily practice. ICF “Core Sets” are subsets of the entire ICF that create manageable reference systems for specific clinical practice and research applications. They are comprised of ICF categories that are considered most relevant for describing the functioning of a person with a specific HC (Selb et al., 2015); and have been developed for many different HCs including the ICF Core Set for Hearing Loss (CSHL) (ICF Research Branch, 2017).
The development of the ICF CSHL follows WHO guidelines and consists of a three-phase, multi-method scientific process (Selb et al., 2015). The preparatory phase and a consensus phase (phase I) have been completed (Danermark et al., 2013; Granberg et al., 2014a,2014b,2014c,2014d). Completion of phase I resulted in the development of two related Core Sets. The Comprehensive CSHL contains 117 categories and serves as a guide for multiprofessional comprehensive assessment. A shorter, “Brief” CSHL was also developed as a subset of the Comprehensive CSHL. The Brief CSHL includes 27 of the 117 Comprehensive CSHL categories and represents the minimal spectrum of functioning of persons with HL for single-discipline encounters or clinical trials. Phase II is currently ongoing and covers the validation of the ICF CSHL to test how they can be efficiently used in clinical practice. The ICF CSHL is intended to assist clinicians in identifying factors that are likely to be relevant to the functioning of an individual with HL, and that ultimately are necessary to address if optimum hearing care is to be delivered. Because the intake assessment is the basis for assessing the needs of the individual with HL and should drive the development of a personalized treatment plan, incorporating the ICF CSHL into the intake procedure of new patients would seem to be a necessary precondition for evaluating its usefulness in clinical practice.
The Mayo Clinic is a large healthcare institution that is organized around the principle of integrated care. Integrated care refers to a collaborative, multidisciplinary approach to patient care and requires a common medical documentation system (an electronic health record) that is accessible and shared by all providers. In addition to the audiology (AUD) and otorhinolaryngology (ORL) discipline-specific intake documentation, the Mayo Clinic’s common medical documentation system’s multidisciplinary intake documentation captures patient information recorded by all healthcare providers. We sought to assess how well current multidisciplinary and discipline-specific intake documentation generated by AUD and ORL providers captures ICF CSHL-related information in patients with ear and hearing problems. Our overarching goal is to enhance patient-centered hearing healthcare by identifying factors beyond the standard audiological evaluation (in this case, the ICF CSHL,) that are relevant to achieving optimal functioning and lived experience in individuals with hearing difficulties. The objective of the present study was to benchmark the extent to which the ICF CSHL categories are captured in hearing healthcare provider records, as this is a necessary precondition for studying the clinical effectiveness of the ICF CSHL. As such, this study is a preliminary step in Phase II of the ICF CSHL.
MATERIALS AND METHODS
Study Design and Setting
A retrospective study design was carried out. Patient records from the Department of Otorhinolaryngology/Audiology of Mayo Clinic in Jacksonville, Florida, were included. This study was approved by the institutional review board of the Mayo Clinic Foundation (IRB 17-004102).
Selection of Patient Records
At Mayo Clinic, persons seeking help for ear and hearing problems can receive care at the Department of Otorhinolaryngology/Audiology via self-referral, external referral, or internal referral. Subsequently, patients can be referred to ORLs or AUDs or both. Typically, both AUDs and ORLs are involved in an individual’s hearing care when patients have or are at risk for ear diseases. The intake documentation forms from patients visiting an AUD were selected as a starting point, and the patients’ ORL intake reports were additionally included when they were available. Intake documentation forms were selected from patient records filed between January 2016 and May 2017. To select eligible patient records, a database was created consisting of new patients (i.e., not previously seen by Mayo Clinic AUDs) seen between January 2016 and May 2017. To ensure the random selection of a representative sample of patient records, the database was structured following three categorization schemes: (1) ICD-10 diagnosis, (2) year (2016 or 2017), and (3) age band (i.e., 18–25, 26–67, > 67). For 2016, the first two patient records of each age band per ICD-10 code were included in the analyses (when available). In response to the attention that was rendered by the ICF CSHL project, in early 2017, the intake documentation forms used by AUDs at Mayo Clinic were modified in an attempt to focus more on the functioning aspects of HL (Alfakir et al., 2015a,2015b). For 2017, only one patient record per age band per ICD-10 code was included. The goal of incorporating this smaller cohort was to assess whether the modification of the standardized intake documentation forms had changed actual intake documentation reports.
Intake Data Sources
Different methods for intake and admission of patients are applied at Mayo Clinic. The four associated formats included in the analyses are described below.
- - Structured Intake Forms
- Structured intake forms are self-administered by AUD patients before their intake consultation and are filled out in the waiting room. The structured intake forms used in 2016 included categories such as the reason for visit, experienced ear problems, health history, and also the Handicap Hearing Inventory for Adults (HHI-A) (Ventry & Weinstein, 1982). In 2017, the structured intake forms included six items of the Speech, Spatial, and Qualities of Hearing Scale (SSQ6) (Gatehouse & Noble, 2004) instead of the HHI-A.
- - Additional Questionnaires
- Additional questionnaires are the Dizziness Handicap Inventory (DHI) (Jacobson & Newman, 1990) and the Tinnitus Handicap Inventory (THI) (Newman et al., 1996). These are also self-administered by AUD patients with vestibular- and tinnitus problems, respectively, in the waiting room before intake consultation.
- - Semi-structured Intake Reports
- Semi-structured intake reports are written by the clinician (i.e., AUDs or ORLs) during and after the intake consultation. The following information is recorded: chief complaint/reason for attendance, background and related information (e.g., clinical history), evaluation summary results (i.e., AUD and ORL tests), other test results (e.g., HHI-A, SSQ6 scores), impressions (i.e., conclusions based on AUD and ORL tests and other tests), and management plan.
- - Mayo Clinic Standard Intake Forms
- Standard practice at Mayo Clinic requires health care professionals to review the most recent patient provided information (PPI) and history and physical (H&P) forms before the consultation. In these forms, the clinician provides a summary of the patient’s general and condition-related health status, past evaluations, and findings (see Appendix, Supplemental Digital Content 1, http://links.lww.com/EANDH/A473).
Linking of Patient Record Content to the ICF
All information documented in the intake was extracted from the intake data sources mentioned earlier and linked to the most precisely corresponding ICF category. The linking was performed following the seven-step linking procedure as established by Granberg et al. (2014b). This procedure combines the linking rules already established by the WHO (Cieza et al., 2005), and the additional rules that were developed especially for the AUD field. The exact linking method is fully explained by Granberg et al. (2014b). The linking was conducted by the first two authors (R. A. and L. v. L.).
Descriptive statistics were calculated for patient sociodemographic and condition-related characteristics. Sociodemographic characteristics included age and sex. Condition-related characteristics included the four domains of the ICD-10, chapter VIII, “Diseases of the ear and mastoid process”: diseases of the external ear; diseases of the middle ear; diseases of the inner ear; and other diseases of the ear.
To determine the extent to which the ICF CSHL were represented in the intake documentation, the overlap between ICF categories in the ICF CSHL and the list of unique ICF categories extracted from the intake data sources was assessed. The same method as used by van Leeuwen et al. (2017) was applied and is briefly described as follows:
- - Overlap was expressed as percentage of ICF CSHL categories that were represented in intake documentation.
- - Nonoverlap was defined as the percentage of the ICF CSHL categories that were not represented in the intake documentation.
- - Extra ICF categories were constructs expressed in the intake documentation but are not part of the ICF CSHL, or constructs currently not part of the ICF.
Please note that PFs are not yet classified within the ICF but the following list of examples that is provided in the ICF’s description: demographics, other HCs, coping styles, social background, education and profession, past life events, overall behavior patterns, and other factors playing a role in disability (WHO, 2001). All constructs that were linked to this example were considered.
Overlap and nonoverlap were assessed separately for the Brief CSHL and the Comprehensive CSHL. Figure 2 provides a schematic illustration of the overlap and nonoverlap between the ICF CSHLs, total ICF classification, and intake documentation.
To ensure reliability of the ICF-linking procedure, all intake documentation was linked by two authors (R. A. and L. v. L.). The degree of agreement in the linking of the two raters was determined at the component level, chapter level, and second- and third-level categories. The percentage of agreement varied between 80% (comparison of linkage to second-level categories) and 100% (comparison of linkage to the component level, chapter level, and third-level categories).
In total, 123 patient records were included for 2016, and 45 patient records were included for 2017. The upper panel of Table 1 shows the sociodemographic and condition-related characteristics of the included patients. Of the 123 records from 2016, 56 (46%) included an ORL intake report in addition to the AUD intake report.
Overlap and Nonoverlap Between Intake Documentation and ICF CSHL
When all the different methods for intake and admission of patients from 2016 were taken together, the total overlap between the ICF CSHL categories and the categories identified in the intake documentation was 100% for the Brief CSHL and 50% for the Comprehensive CSHL. More details of the overlap and nonoverlap results for the different ICF domains are presented in Tables 2, 3, S1, Supplemental Digital Content 2, http://links.lww.com/EANDH/A474, and S2, Supplemental Digital Content 3, http://links.lww.com/EANDH/A475. The results are reported per type of intake documentation method that was encountered in the patient records. Results of the 2016 cohort are discussed below for AUDs and ORLs, respectively. Lastly, a comparison is made between the 2016 and 2017 cohorts.
All BS categories of the Brief and the Comprehensive ICF CSHL were identified in AUD and ORL intake documentation (Table 2). Most of these categories were found in the patient history or the assessment section of the intake reports (e.g., conductive HL may indicate impairments in the middle ear [s250], and sensorineural loss indicates impairments in the inner ear [s260]). Examples of patient history statements included: “Patient was told he had some holes in his ears” (s250), “indication of perforations in tympanic membrane” (s2501), or “ear mass in right ear canal” (s240).
The categories of the BF component identified in patient records showed 57%, and 86% overlap with the Brief CSHL for AUD intake documentation and ORL intake documentation, respectively (Table 3). For the Comprehensive CSHL, these percentages were 55% and 45%. For AUD intake documentation, the second-level ICF category “hearing functions” (b230) and its second-level categories (b2300-b2304) were all represented in intake reports and structured intake forms. Also, the second-level category “sensations associated with hearing and vestibular functions” (b240) was often linked together with the more detailed third-level categories b2400-b2405 (e.g., “irritation in the ear” [b2404]). Information on b240 was either reported as a reason for referral (e.g., tinnitus) or found in a list of ear-related complaints that the AUD could use to check for its presence (e.g., “History was positive for tinnitus”; “Patient does not report dizziness/balance problems, aural pressure/fullness”). “Vestibular functions” (b235) were extensively reported on in the records as well, either in the list of ear- and hearing-related complaints or more comprehensively in the vestibular report. Regarding ORL reports, information on b230 and b240 was less extensively reported on as compared with AUD reports. Information on higher mental functions (i.e., energy, motivation, and attention functions) was never represented in the reports. Both AUDs and ORLs reported on “pain” (b280), mostly related to “pain in the ears” (i.e., coded as b28010). No documentation on “voice functions” (b310) and “speech functions” (b330) was identified in any of the AUD or ORL intake documentation.
Activities and Participation
The percentage of overlap between the ICF CSHL and the intake documentation of the A&P component was 67% and 44% of the Brief CSHL and 26% and 14% of the Comprehensive CSHL for AUD and ORL reports, respectively (Table S1). The following categories were represented in AUD reports but not in the ORL reports: “learning and knowledge” (d1), including “watching” (d110), “listening” (d115), “focusing attention” (d160), and “handling stress” (d240). The latter was mostly reported in relation to tinnitus. Categories on “communication” (d3) were well represented in AUD reports. Here is an example of a AUD report fragment: “Overall, the patient reports having modest problems understanding speech on a daily basis (d310). The patient reports difficulties understanding speech spoken in background noise (d310, e250) or in group conversation situations (d3504), over distances (e2-nd) and over electronic media (d360).” In addition, because the HHI-A was administered as part of the structured intake forms, the category “formal and informal interpersonal relationship” (d740, d750) was linked. An example item included: “Does a hearing problem cause you difficulty hearing/understanding coworkers, clients, or customers?.” No information was reported in the intake documentation on “basic and complex interpersonal interactions” (d710, d720), such as tolerance in relationships or maintaining and managing interactions with other people. The only communication category of the ICF CSHL that the ORL intake reports covered was the category “receiving spoken messages” (d310). The category “interpersonal interactions and relationships” (d7) was not represented in any of the intake documentation. Furthermore, AUDs and ORLs included little to no documentation on “mobility” (d4), “domestic life” (d6), and “education, apprenticeship and economic” (d8) categories. In contrast, information on “remunerative employment” (d850) and “recreation and leisure” (d9) was reported both in the AUD and ORL reports, mostly in the context of noise exposure (e.g., “noise exposure [occupational, military]”, “noise exposure [recreational, fire arm use]”) or as a brief statement in the patient history (e.g., profession: “The patient is working in a lab at University”).
AUD and ORL reports showed similar levels of overlap for categories in the EF component: 71% and 71% overlap with the Brief CSHL and 17% and 21% with the Comprehensive CSHL, respectively (Table S2). When documentation was linked to “products and technology for communication” (i.e., e125, and more specifically, e1251), this mostly related to hearing aids ownership, hearing aid use, and hearing aid prescription/recommendation by the AUD or ORL. Following one of the linking rules of Granberg et al. (2014b), both “sound” (e250) and “design” (e150) were linked when there were reports on public arena settings such as restaurants (e.g., “When the patient is in loud restaurants, the tinnitus worsens”). When the intake documentation reported: “The patient is accompanied by wife/friend/daughter/mother,” this was linked to “support from family” (e310). Referral information was linked to “support from health professionals” (e355). Reports on previous treatments or diagnostics by other health care providers as part of the patient’s history was linked to “Information on health services” (e580).
Extra ICF Categories
Extra BS categories mostly originated from the ORL intake documentation (Table 4). For example, all ORL records included a standard summary of the diagnostic review of the patient’s nose, mouth, pharynx, and larynx structures. Most of the extra BS categories are related to tinnitus and vestibular/balance problems. For example, information on “sleep functions” (b134) was often identified in tinnitus patients’ records, and “motor functions” (b7) and “mobility” (d4) for patients with vestibular/balance problems.
Extra Non–ICF Constructs
Most of the extra non-ICF constructs that were identified in the AUD and ORL intake documentation were either ICD-10 diagnostic codes or PFs (Table 5). The following PFs were identified: age, sex, other HCs/comorbidities, medication/ototoxic medication, past exposure to significant noise, and previous ear/head traumas and ear surgeries. In addition, most ORL intake reports described the specific circumstances under which the patient experienced the complaint onset (e.g., during the take-off of an aircraft) and the referral pathway to Mayo Clinic.
Intake Reports From 2016 Versus 2017
The number of ICF CSHL categories that were identified in the intake reports of 2016 did not differ from the number that were identified in 2017 (Table 1, lower panel). Regarding the 2017 intake forms, less A&P categories were covered, and there was more focus on the categories in the BF component in 2017 as compared with 2016.
Additional Information Via Mayo Clinic Standard Intake Forms
The information extracted from the PPI and H&P forms mostly added information on PFs and included information on social history (e.g., social and psychosocial habits) and general health information. Also, information relating to intellect, memory, and cognitive functions were identified in some of the H&P forms.
The aim of the present study was to assess the extent to which AUD and ORL discipline—specific intake documentation as well as Mayo Clinic’s multidisciplinary intake documentation captured the aspects of the ICF CSHL. One hundred percent overlap was found for the Brief CSHL, and 50% overlap was found for the Comprehensive CSHL. These findings are comparable to the results of van Leeuwen et al. (2017), who found an overlap of 89% and 51% for the Brief and Comprehensive CSHL, respectively. Regarding the Comprehensive CSHL, intake documentation covered all categories from the BS component, and a large overlap was identified for the BF component. Large nonoverlap was found for the A&P and EF components, which is also in line with what van Leeuwen et al. (2017) found. Examples of absent ICF CSHL A&P categories include precise description of difficulties related to “learning and applying knowledge” (d1), “mobility” (d4), and “interpersonal interactions” (d7). Regarding the EF component, little coverage in the intake documentation was found for “support” (e3), “attitudes” (e4), and “support services other than health services” (e5). All these categories have been found to be potentially important for an individual’s well-being and accessibility to support services (Granberg et al., 2014d). These findings on A&P and EF components confirm that the current AUD and ORL practice is predominated by the clinical perspective of ear disease (BS and BF components). ORLs reported especially poorly on the ICF CSHL categories in A&P and EF components, suggesting that ORLs are even more led by a clinical perspective of ear disease than the AUDs. This could also result partly from the fact that—in contrast with the AUDs—no structured intake forms were used by ORLs. Alternatively, because AUD evaluations are routinely performed before ORL evaluations, and both disciplines share a common electronic health record, efforts to capture aspects of the clinical picture in the ORL evaluation that had already been identified in the AUD record would be duplicative and would remove one of the principal efficiencies of a single shared electronic health record—removing the need for redundant evaluation. The relevance and importance of many of the missed categories of the ICF CSHL have been addressed in previous studies and is therefore not the focus of this discussion (Hickson & Scarinci, 2007; Scarinci et al., 2012; Granberg et al., 2014d; Grenness et al., 2014,2015,2016; Timmer et al., 2015; Alfakir et al., 2015a,2015b).
As mentioned in the Methods section, AUD intake documentation forms were adjusted early in 2017 in an attempt to—in line with the ICF CSHL—collect more functioning-focused information. The intent was to assess constructs such as participation, PFs and to some extent EFs on a global (chapter) level. The change of the structured intake forms in 2017 did not substantially increase the number of ICF CSHL categories that were reported. Regarding the Comprehensive CSHL, larger nonoverlap with A&P categories in the intake forms was identified, which also seems to have led to less A&P documentation in the intake reports written by AUDs. Further, although new categories were identified in the 2017 version, other categories previously captured in the intake documentation of 2016 were not covered in the 2017 version. During the intake documentation change in 2017, a tradeoff was made between a more detailed description of some aspects of day to day life and the identification of difficulties and challenges in the broad sense. We could not evaluate whether this strategy was more or less sensitive in identifying hearing-related problems. Ultimately, future validation processes will provide evidence for how best to standardize an inventory of all relevant categories.
Extra ICF Categories
Extra ICF categories were identified in the BS, BF, and A&P components. The extra ICF categories in the BS component were mostly identified in the ORL intake documentation reports and are logical additions in the context of otology as part of ORL. Regarding BF and A&P, most of the extra ICF categories were documented in the records of patients with tinnitus or vestibular evaluations. For example, the extra ICF categories linked in vestibular evaluations included “motor functions” and “mobility” (i.e., “gait pattern functions” [b770], “changing basic body position” [d410], “maintaining a body position” [d415], “walking” [d450], and “moving around” [d460]). This is not surprising, as vestibular and balance disorders are commonly associated with mobility problems. Vestibular and balance disorders can have a major impact on functioning in daily life (Smith et al., 2005; Smith & Zheng, 2013), and taking into account all relevant aspects of the HC, functioning- and disability-related factors to these disorders are therefore essential. The extra ICF categories that were linked to the intake documentation forms and reports are all included in the Brief Core Set for Vertigo (Grill et al., 2012). We suggest that the ICF Core Set for Vertigo could be combined or integrated with the ICF CSHL when patients present with HL and vestibular deficits.
Further, both in the AUD and ORL intake documentation the ICF category “sleep functions” (b134) was reported. This category seems important for individuals with HL and tinnitus or vestibular problems (Newman et al., 1996; Jacobson & Newman, 1990). This finding is consistent with the study of van Leeuwen et al. (2017) and provides additional support for the inclusion of this category into the ICF CSHL.
The non-ICF constructs identified in the intake documentation mostly concerned PFs. Note that, at the time of this writing, the list of categories to be included in the PF component is tentative and incomplete and does not concern any classification. The PF component is currently brief and described in the ICF as “internal factors, which may include gender, age, coping styles, social background, education, profession, past and current experience, overall behavior pattern, character and other factors that influence how disability is experienced by the individual” (WHO, 2001, p.8). However, not developing categories for PFs in the ICF was a well–thought out decision at that time. The reasons were: (1) there is too much cultural variation to define an exclusive set of relevant PFs, and (2) there is no consensus-based robust conceptualization or definition of what PFs are yet (WHO, 2001). Additional difficulties with the conceptualization and categorization of PFs have been identified (Geyh et al., 2011; Müller and Geyh, 2015). One is that the tentative list of factors potentially overlaps with other components of the ICF model. For example, age and gender have biological roots (and so would be captured by BF and BS) but are also socially constructed (e.g., being a woman is not merely a biological distinction but also a social one and so would be captured by PF). Also, many of the psychological assets in the ICF tentative list (e.g., cognitive psychological factors and emotional reactions) overlap with the categories of mental functions of the BF component. It could, therefore, be argued that our linking of such factors should have been to existing ICF components instead of labeling them as PFs and thus “non-ICF constructs.” Another difficulty is that the position of PFs in the ICF model is similar to that of EFs (they act as a facilitator or a barrier to an individual’s functioning), but they are often not interpreted in this way (Geyh et al., 2011). Despite the fact that currently there is no clear definition and categorization for PFs, we—in line with Granberg et al. (2014d) and Alfakir et al. (2015a)—argue that consideration of PFs would add to gaining a comprehensive perspective about a person’s functioning. For example, a person’s general or situation-specific coping style can be an important factor that can directly affect a person’s A&P (both as a facilitator and a barrier) (Hallberg & Carlsson, 1991a,1991b,1992; Hallberg, 1999; Hallberg et al., 2008; Alfakir et al., 2015a). Although challenging, some standardization of the PF component would facilitate this.
Intake Reports Versus Structured Intake Forms and Questionnaires
Information provided by the structured AUD intake forms and questionnaires accounted for a large part of the overlap that was found (Tables 2, 3, S1, S2). This suggests that standardized self-reported measurement instruments, such as health status questionnaires, may contribute to a better understanding of a patient’s functioning and disability (i.e., explain their concerns regarding hearing complaints). Moreover, using such instruments aligns with patient-centered care by explicitly assessing the patient perspective (Greenhalgh et al., 2017). In particular, structured intake forms and questionnaires may help direct the conversation between the clinician and the patient to systematically explore and understand the full extent and context of the problems experienced by the patient. Information not directly related to the audiological impairment is considered particularly important for setting up patient-centered consultation for rehabilitation (Grenness et al., 2014,2015,2016). It is important to note that, patient-centered care has been found to be associated with improved patient outcomes including higher levels of satisfaction with care and better treatment adherence in the primary care setting (Stewart, 1995; Mead & Brower, 2002; Dwamena et al., 2012). However, in the present study, there was little indication that the detailed information captured in intake questionnaires were considered in the AUDs’ assessment and management documentation. In the intake reports, AUDs seemed to heuristically make statements about the presence and degree of hearing or communication “impairment” based on clinical measurements: hearing loss magnitude, speech recognition test results, and questionnaire scores. The specific problems experienced by the patient were seldom explicitly described. Moreover, factors beyond these clinical measures that can influence performance of routine auditory activities or affect the patient’s overall ability to participate in society (such as chronic pain, depression, cognitive challenges, problematic social interactions, etc.) were not explicitly identified or addressed, even when these problems appeared strongly related to the participation needs that drove the patient to seek audiological services in the first place. Failing to consider all aspects relevant to hearing yields an incomplete understanding of an individual’s functioning and personal situation (Granberg et al., 2014d), thereby possibly limiting patient-centered care.
Various barriers may limit implementation of patient-reported information beyond the standard evaluation in clinical practice. For example, AUDs may not wish to identify or take ownership of problems beyond those anticipated by the degree of HL, even though they may influence the person’s ability to use hearing on a day-to-day basis, particularly if AUDs are not in a position to effectively organize treatments for those problems. Scope of practice limitations, reimbursement challenges, or limited access to other healthcare providers may be at play. However, when hearing healthcare services are limited to the provision of hearing aid devices or corrective surgeries, “hearing evaluations” can devolve into a screening exercise to identify candidates for those treatments, rather than careful exploration into the nature and context of a person’s unique hearing difficulties and needs. Failure to offer an array of hearing health care intervention options targeted to patients’ needs has been reported to be a major factor contributing to low hearing aid or communication program utilization rates (Laplante-Lévesque et al., 2012). Use of the ICF CSHL may help structure a more explicit understanding of the various needs of the person with hearing difficulties by placing identified deficits/impairments into a more relevant individualized context. The goal is to facilitate better patient-centered care and ultimately improve patient outcomes (Meyer et al., 2016; NASEM, 2016).
It is important to recognize that the ICF CSHL was envisioned to contain categories that are likely to be relevant to an individual patient’s functioning. However, operationalizing the ICF CSHL as a way to describe and predict auditory functioning in clinical practice is still developing. The hope is that the ICF CSHL will identify factors that are amenable to available rehabilitation, and make a difference in clinical outcomes (see for instance Alfakir and Holmes, 2017). Validation studies focusing on how to implement the ICF CSHL in aural rehabilitation practice are needed.
Mayo Clinic’s Multidisciplinary Intake Documentation
As mentioned in the Methods, standard practice at Mayo Clinic requires AUDs and ORLs to review PPI forms and clinical H&P forms before the intake consultation. In the present study, important ICF CSHL categories were identified in these forms that were not captured by the AUD or ORL documentation. For example, information about a patient’s complementary systems (e.g., visual, mental), was captured within the context of the multidisciplinary intake documentation that was not identified in the AUD or ORL specific intake documentation. This “additional” information adds to the construction of a more comprehensive picture of the patient (Lin et al., 2011; Anderson et al., 2013; Pronk et al., 2014; Pichora-Fuller, 2015,2016), and potentially could contribute to more successful treatment outcomes in patients with HL. One of the advantages of shared intake documentation forms is that information across disciplines can be quickly reviewed without the burden of each practitioner collecting all data from every patient themselves. However, as with the structured intake forms and questionnaires, it was not always clear if and how this additional information influenced the patient’s management plan.
The AUD and ORL discipline-specific documentation in the present study had similar amounts of overlap with the CSHL as those identified in the study by van Leeuwen et al. (2017). In that study, overlap was assessed in AUD and ORL clinics without a shared multidisciplinairy electronic health record. This may indicate a bias for each discipline to frame the patient’s hearing problems from a restricted, discipline-specific viewpoint. Developing a systematic standard for collecting and reporting ICF CSHL information might promote a more holistic clinical conception of the patient’s presenting hearing problem by AUDs and ORLs.
Toward ICF Implementation in Hearing Healthcare
The overall scope of the ICF CSHL can seem overwhelmingly broad in the setting of a single discipline clinic. At least initially, its implementation may be more easily achieved in multidisciplinary group practice settings that use a shared electronic health record. The Mayo Clinic has the integrated electronic health system already in place, but to be useful, more efficient and validated ways of collecting and presenting ICF CSHL data from individual patients will need to be developed.
An alternative to relying on a shared multidisciplinary electronic health record to capture all ICF CSHL categories, and that also aligns with patient-centered care, is the operationalization of the CSHL into an electronic patient-reported outcome measure (e-PROM). e-PROMs can contribute to the electronic health record by facilitating better integration of patient needs, preferences and valued outcomes into all treatment and rehabilitation decisions (Bingham et al., 2017). Moreover, e-PROMs can provide information from the patient perspective on functioning and may provide an effective way of monitoring patient-valued outcomes.
The aim of our study was to identify all the different ICF CSHL categories that were reported in the intake documentation, independent of how often a category was reported. As a consequence, this study does not reveal how often certain categories were documented, nor if lack of documentation occurred simply because patients in our sample did not have a relevant CSHL-related problem. Also, our study relied on information entered in the patient records. We cannot assess whether identified ICF CSHL data were relevant to the care of an individual patient. Nor can we determine if ICF CSHL data were considered when a plan of care was developed. These concerns will be the focus of future validation studies.
Another limitation of our study that might limit the generalizability is that we linked the ICF CSHL categories to the intake documentation in a largely diagnostic clinical setting. Our study does not reveal how the ICF CSHL would be represented in a purely audiology rehabilitation setting. Our patient population did include audiology rehabilitation patients, such as patients with hearing aids or cochlear implants. By design, the Mayo Clinic evaluation process is structured first to identify and treat ear disease. Aural rehabilitation assessment and planning occurs after the medical (bio-physical) focused evaluation is completed. As a result, the current clinical intake process is dominated by the clinical perspective of ear disease. In rehabilitation settings, the goal is to improve an individual’s functioning in daily life. Documentation overlap with the psychosocial ICF CSHL categories might be higher than in Mayo Clinic’s clinical setting. This should be investigated in future research.
The International Perspective
The aim to implement the ICF CSHL into Mayo Clinic’s system alongside similar initiatives in the Netherlands (van Leeuwen et al., 2017), align with the objectives of the World Health Organization’s Global Disability Action Plan 2014–2021, Better Health for All People With Disability (WHO, 2015). These include: “(1) to remove barriers and improve access to health services and programs, (2) strengthen and extend rehabilitation, assistive devices and support services, and community-based rehabilitation, and (3) enhance collection of relevant and internationally comparable data on disability, and research on disability and related services.” The ultimate aim is to “enable people with disabilities to fulfill their aspirations in all aspects of life.” This study is an important first step toward the overarching goal to improve the functioning and lived experience of persons with hearing problems.
The multidisciplinary intake documentation of Mayo Clinic showed 100% overlap with the Brief CSHL, while important areas of nonoverlap were identified in AUD- and ORL discipline–specific reports. This highlights the breadth of health factors that can potentially impact the functioning of individuals with ear and hearing problems and are not commonly included in the discipline-specific intake evaluations. With this in mind, efforts to further validate the ICF CSHL may require the involvement of multidisciplinary institutions with commonly shared electronic health records. Taking into account all relevant aspects of a patient’s functioning would seem to be essential to development and evaluation of new, patient-tailored treatments. A combined multidisciplinary documentation document or a more efficient means of collecting ICF CSHL information (possibly via e-PROMs) will be required to capture ICF CSHL–related information in discipline-specific clinics.
The study was financially supported by a Crawford Post-Doctoral Fellowship (R.A.), the Stichting Het Heinsius-Houbolt Foundation, and by an EMGO+ travel grant (to L. v. L.). The work presented in this article was completed in collaboration between all authors. The first two authors (R. A. and L. v. L.) contributed equally to this work, including data collection, analyses, and the writing process. All authors contributed to the conception and design of the work and reviewed, edited, and approved the final paper. The authors gratefully acknowledge the Mayo Clinic Research and Editing Services for their assistance in manuscript preparation.
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