Operationalizing Patient Centered Care: An Interview with Caitlin Barr

Author: Brian Taylor, Au.D. and Caitlin Barr, Ph.D.

Historically, audiologists have been trained under the medical model. To work under the medical model essentially means the audiologist’s primary objective is to identify individuals, who, based on a specific audiometric pattern or constellation of symptoms, are at risk for ear disease. Once those individuals are identified, they are referred to an otolaryngologist for further work-up and treatment.

Let there be no doubt – this is a critical facet of audiology. And it is unlikely to change. Without competent audiology, many medical conditions involving the ear would go untreated. At the same time, however, the majority of adults seen in an audiology clinic do not have active ear disease, but a benign condition that often results in communicatively impaired hearing. For this large group of individuals, the medical model, based on identifying the cause of a condition and treating it, falls short of patient expectations. For adults with adventitious hearing loss, once ear disease has been ruled out as a factor, the audiologist often needs to guide a patient through the process of getting help addressing their communication deficit. The medical model isn’t much help in this process.

From the perspective of the person dealing with the daily consequences of hearing loss, focusing on the audiogram and other components of the test results is limiting. After all, audiologists don’t treat the audiogram; rather we treat or manage the patient’s ability to become more active participants in daily living. Our ability to practice audiology cannot be confined to test results. Instead, it is our humanistic ability to address the emotional components of coping with hearing loss. Those attitudes and behaviors associated with an inability to hear, and come to grips with getting help are components of the patient-audiologist interaction that the traditional medical model doesn’t fully capture.

This interview with research audiologist, Dr. Caitlin Barr, discussed how the ICF model can be used as springboard into patient-centered care. It provides a road map for how the International Classification of Functioning (ICF) can be used to bring true patient centric care to life in a practice, perhaps more importantly, why the ICF model in an era of commoditization of technology represents the future of audiology.

Brian Taylor: I’ve heard a lot of talk over the past few years about the International Classification of Functioning or ICF for short. Can you tell us what those letters stand for? Where did it come from? And, more importantly, it’s been around for more than 15 years why do clinicians need to know about it now?

Caitlin Barr: You’re right Brian, although the ICF is not a new concept, it has become increasingly relevant to audiologic services today. In many ways, it offers structure and guidance to clinicians about how to offer services in such a way that fulfills the needs of today’s client, in a market where individualized care is sought after.

The ICF, is the short-hand acronym for the World Health Organization’s International Classification of Functioning, Disability and Health (ICF). The WHO, which has a substantial interest in promoting a shared understanding of disability, prevention of disability and disease, and management of health across the world for all ages, developed this framework to describe how one experiences health and health-related states (and therefore, how one might experience a deviation from health). That is, its focus is on what constitutes function (not disease). This means that the ICF presents a framework that helps us see that many individuals can have a health condition or disease, but may not share similar concerns or experiences in the context of their life. This framework, which is summarized in Figure 1, is so broad that is can apply to any given health condition for any age group, and any culture and context.

Figure 1

The most powerful aspect of the ICF, which was released in 2001, is that it very clearly presents the case that an individual experiences health due to a complex interaction of multiple parts of their life. The WHO defines health as “the complete physical, mental and social functioning of a person and not merely the absence of disease.” That is, being healthy comes not just from having a healthy physiological and anatomical state (being biomedically well), but from also being fulfilled emotionally (psychological aspects), and able to undertake daily activities, participate in life, and have meaningful relationships (social aspects). This complex interaction is termed the ‘biopsychosocial perspective’, and underpins of the ICF. You will see these terms reflected in the ICF.

The ICF is made up of three domains. Health and functioning is described according to Body Functions and Structure (for hearing, this is the complex process of audition) and Activities and Participation (for hearing, this may be ability to differentiate speech signals in background noise and therefore participate in social gatherings). If something has gone wrong in any of these three domains, the terminology used is that one has an impairment (to their body function and structure: ie., the cochlear or middle ear); an activity limitation (ie., poor speech in noise recognition or spatial processing problems) which leads to participation restrictions (ie., lack of enjoyment at social gatherings, poorer relationships). Sometimes activities and participation are grouped and described together.

To ensure that this framework is applicable across ages and cultures, the ICF also considers the mediating impact of contextual factors; that is the external environment in which someone exists and that they cannot directly control (Environmental Factors: family, work, government, laws and cultural beliefs – attitudes and provision of health services also fits here!) and internal or intrinsic factors (Personal Factors: gender, race, age, education level, coping style and personality).

So in summary, the ICF is not only applicable to hearing and hearing rehabilitation, it presents us with a strong case that if services are provided in such a way that measures and addresses a single aspect of the ICF without consideration of the others, we are likely to fall short of success. This brings me back to your point about ‘why now?’. Although the ICF has always been relevant, it is receiving greater attention now as we have the evidence which confirms that audiologic practice, that does not consider an individual’s biopsychosocial needs, leads to poorer or sub-par outcomes. For example, measuring impairment to Body Functions and Structures (via an audiogram), and fitting a hearing aid based on thresholds, and perhaps some goals which relate broadly to understanding speech in noise, does not always equate to successful, daily use of the device, or improvements in that person’s self-efficacy or quality of relationships.

Brian Taylor: I recall the ICF manual saying something about “third-party disability.”  What does this term mean?

Caitlin Barr: Yes, third-party disability is an important ‘add on’ to the ICF. If we think back to the ICF, the terminology tells us that when one deviates from health, they experience disability (which may come in the form of impaired Body Function and Structures, Activity Limitations or Participation Restrictions). The concept of third-party disability, acknowledges the reality that family and friends of a person who is experiencing disability, may also report activity limitation or participation restrictions because of their significant other’s disability. That is, they too experience disability. It is well established that this is the case with hearing disability – although one party may have the impairment to Body Functions and Structure (ie., the hearing loss), others may experience disability in the other ICF domains (ie., lack of enjoyment at social activities or reduction in quality of relationships). Nerina Scarinci and others have done some great research exploring this concept.

It is not surprising then, that to address disability that involves changes to hearing or communication, hearing care professionals need to understand and address the needs of those who are experiencing third-party disability as well. This approach is widely termed ‘family-centered care’.

Brian Taylor: I also recall that ICF manual referring to something called “core sets.” How many of these core sets are there and what do they refer to?

Caitlin Barr: The ICF is backed by a hierarchy of detailed codes for many health conditions, called Core Sets. That is, groups of experts have painstakingly listed and coded all the main experiences an individual might have in each domain of the ICF. The core sets are allocated numbers, which explain the component of the ICF to which they refer, the level in the hierarchy (ie., how board or specific the experience is) and, a scale of impact or severity. For example, for Participation, one code might be ‘communication’, which might specifically refer to conversation (code: d350), which can be further defined as conversation with one person (d3505), as opposed to in a group. This detailed coding has been conducted in relation to hearing loss by Granberg and colleagues, and contains 117 categories! So, hearing loss has broad-ranging functional experiences! There is also a brief version of the core sets which has 27 codes; these are the codes that clinicians would be most likely to use regularly. Essentially, these codes are a way of quantifying or highlighting that an individual will experience their disability in a unique way (with a unique combination of core sets).

Brian Taylor: Now that we’ve gotten some of the technical jargon out of the way, let’s focus on clinical applications. In your recent Seminars in Hearing article, you write about “operationalizing patient-centered care.” It sounds a lot like a business term, what do you mean by it?

Caitlin Barr: In that article, and by using this term, we are certainly referring to ‘putting it into practice’ – which is all hearing care professionals’ business! My take on the ICF is that it facilitates audiologists doing just that, putting person and family-centered care into practice in two ways.

First of all, the ICF offers clinicians and clinics an imperative to provide audiologic services that take a biopsychosocial approach as it places the HCP within an individuals’ experience of their disability. Earlier I mentioned that health professionals (their attitudes and quality of services) are considered Environmental Factors in the ICF. Health professionals, and the quality of service provided, can therefore be barriers or facilitators to clients’ outcomes; as a health professional, you cannot separate yourself from your client’s outcomes.

Secondly, audiologists are working in a contestable market with savvy consumers, who are rightly encouraged to exercise their need for individualized and informed care. Broadly, we use the terms person- and family-centered care to describe provision of services that encourages participation in care, but also importantly addresses the person and their significant other as a whole. In this way, the ICF can be considered a guideline as to what makes a person ‘whole’ and therefore what needs to be understood about that person and their context, and what needs to be delivered as part of the strategy to reduce their disability.

Brian Taylor: Of the three key components of the ICF: body function & structure, activities and participation, tell us how a clinician can assess all three components in a typical 30 to 60 minute block of time.

Caitlin Barr: First, I’d like to address your comment about time: using the ICF, or operationalizing person- and family-centered care, does not impact the time you take with your client; it simply helps to prioritize how the time is used. Prioritizing understanding a person’s disability and functioning early on means that less time will be needed for add-ons and modifications or alterations down the road.

A terrific way for a clinician to find their own strategies to implement the ICF, is to do an audit of their current practice. I suggest printing out (or drawing out) the ICF diagram. For each test, question, or task that the clinician does/asks in a consultation, write on the ICF where the findings or results sit. For example, if a clinician uses a history questionnaire which asks “Does one ear hear better than the other? do you experience tinnitus? How long have you noticed these symptoms?”, and conducts an audiogram, you would write this information in the Body Function and Structure box. The challenge is looking honestly at where the gaps are at the end. Did the case history include questions that provide insight into participation? Personal factors and environmental factors?

When working with clinicians on this exercise, we often find that we explore and document Body Function and Structure thoroughly, but tend to be light-on in other, equally important areas. By light-on, I mean no information, or surface-level, descriptive information (ie,. Has trouble in listening in background noise) as opposed to in-depth, emotionally-linked information (ie., difficultly listening in background noise has impacted confidence to attend social gatherings; feeling removed from friendship group and is uncomfortable bringing it up with friends).

Should you find that there are gaps or opportunities to improve the depth of information in some areas of the ICF, there are several tools and strategies that can be used. For example, at the assessment stage, open a dialogue about activity limitation and participation restrictions – this will require talking about emotions! If you’re unsure of how this fits for you, start off introducing some measures such as The Hearing Handicap Inventory for Adults / Elderly (HHIE) which asks specifically about social and emotional impacts of hearing disability; likewise, to address third-party disability, include measures such as the Significant Other Scale for Hearing Disability, or similar. When setting goals (an essential part of understanding a person’s functioning and prioritizing for management planning), ensure that goals span all aspects of the ICF. For example, goals may relate to overcoming the loss of audibility in high frequencies (body function), feeling more confident to attend social gatherings (participation) and improve speech detection on the telephone (activity). Goals of the significant other can also be included here, using tools such as the Goal Sharing for Partners, and should also span all domains of the ICF and ideally should include some goals that are shared.

Once you have audited your own practice, you may also find that there are some tests, tasks or questions that you can stop using, or use more selectively, as you may already be gaining sufficient information about this domain via other means. This is another strategy to ensure that using the ICF doesn’t impact your appointment time.

Brian Taylor: OK, now that we know more about the value of the ICF with today’s well-informed consumer of hearing healthcare, what are two recommendations you have for a clinician who wants to start using the ICF approach?

Caitlin Barr: Using the ICF to inform audiologic practice need not be a daunting overhaul of your clinical service, but does need to start with an honest reflection on your own current practice.

Thus, it bears repeating that my first recommendation is to take some time to audit and evaluate your current practice as I describe above. Don’t be afraid to question some of our most tightly held practices, which are not mandated by practice standards, but that we do ‘because we always have.’ In this reflection, a clinician should also honestly consider how comfortable they are with undertaking conversations that may be more difficult than previously experienced. Conversations where you ask and hear about wellbeing, emotions and relationships can be daunting, particularly when family are involved, but they are an essential part of understanding a whole person’s functioning, and are very doable for hearing care professionals. If you conduct this audit and find nothing for improvement, you should look again. Even the most person- and family-centered clinicians and clinics can find opportunities to optimize care.

Based on the first step, the second recommendation is to take action on your audit by seeking out tools and strategies, or develop your own. Many clinicians report that undertaking additional training in counseling or communication, understanding disability and family dynamics to be one of the most satisfying professional development activities they could do. Implementing just one or two changes at a time means that you can track (formally or informally) the difference a change has made, and further modify, where needed, before moving onto the next area.

Brian Taylor: What value would that approach have to that consumer of hearing healthcare services relative to the traditional approach?

What we haven’t spoken of today is how to use the ICF in management planning, and although this often flows on from using the ICF in assessment, it is also important for clinicians to consider on its own. Does the management plan you’re working on cover all aspects of the ICF and is it being implemented in the context of this person’s environment and personal factors?

By using the ICF as a guide to operationalizing person- and family-centered hearing care at assessment, management planning, and everything in between, an audiologist is showing that he is an imperative part of optimising outcomes for his client. That is, the service itself has value and worth, and the professional is invested in the consumer’s experience and outcomes.

Ultimately, for consumers whose experience of health includes changes in functioning around hearing and communication, access to audiologic services that consider disability in terms of biopsychosocial functioning will ensure that their needs are appropriately understood, and can therefore more closely be met at an individual, unique level. Remember that a health condition does not define functioning, yet functioning can be impacted by a health condition, and is mediated by many other factors. Therefore, an ICF-based approach prioritizes understanding functioning as a whole person or family which will ensure meaningful and long-term improvements in that person’s daily life.

To learn more about operationalizing patient care using the ICF model, check out the August 2016 issue of Seminars in Hearing, guest edited by Mridula Sharma, PhD.    
Dr. Caitlin Barr may be contacted at caitlin.grenness@unimelb.edu.au.