Adolescents with Hearing Loss and the International Classification of Functioning, Health, and Disability: Children & Youth Version

Abstract

In 2007, the World Health Organization published a set of International Classification of Functioning, Disability and Health (ICF) codes designed for children and youth (ICF-CY version). The ICF-CY considers typical developmental changes associated with childhood while describing health status and the effects of intervention. In this article we will describe how a specific intervention (transition planning for adolescents) can be documented with the ICF-CY. Transition planning in health care prepares adolescents and their families for the transfer from pediatric to adult health services and has been demonstrated to be an effective practice for adolescents with many types of chronic health conditions (e.g., cystic fibrosis, epilepsy, diabetes). Audiology has not yet addressed transition planning for adolescents with hearing loss; therefore, we propose using the ICF-CY to design a pathway of care. The ICF-CY can standardize transition planning to the benefit of both teen patients and audiologists: teens and their families would gradually acquire necessary knowledge and skills, and audiologists would develop a meaningful data set to help further inform our pediatric practices, as well as give more structure, depth, and accountability to our role in rehabilitation.

Learning Outcomes: As a result of this activity, the participant will be able (1) provide a rationale for transition planning in pediatric audiology, and (2) list three skills associated with health literacy.

In 2001, the World Health Organization (WHO) published the International Classification of Functioning, Disability and Health (ICF), described in detail elsewhere in this issue.¹ Soon after, an international review team was charged to develop an adaptation that was sensitive to the developmental changes occurring in childhood and adolescence. After 5 years of work, the team submitted a set of recommendations, resulting in the ICF: Child & Youth Version (ICF-CY). This version includes:

• Modified or expanded descriptions

• New content to unused codes

• Modified inclusion and exclusion criteria

• Expanded qualifiers to encompass developmental aspects²

Like the original framework, the ICF-CY has two parts, functioning and disability (body functions, structures, activities, participation) and contextual factors (environmental and personal factors; Fig. 1). Also like the original, the ICF-CY serves not as an assessment tool, but as (1) a framework designed to understand the multiple dimensions of living with a health condition and (2) a classification system to describe those dimensions.³ It is frequently used to report a one-time summary of individuals or populations for data collection and analysis,⁴ public policy and legislation,^{5 6} and service eligibility.⁷

Figure 1.

World Health Organization's model for comprehensive care.

However, the ICF-CY can also be dynamic. For example, it can be used to monitor health status at different ages.^{9 10} It also can be used to track responses to interventions over time.^{11 12 17} Because of the inclusive nature of the ICF-CY, interventions of all kinds can be monitored for their impact on any or all of the ICF domains.¹³

In this article, we propose the application of the ICF-CY to the latter circumstance: to document change occurring in adolescence (ages 13 to 18) in the domains of activity and participation as a response to intervention. Although adolescence is a unique experience for every teen, one circumstance shared by teens with hearing loss is their participation in health care. Most health care systems are complex, and most young teens rely on their caregivers to manage the system for them: to make appointments, provide transportation, communicate with audiologists and other health care providers, follow-up on recommendations, fill prescriptions, and so on. However, by the time they are discharged to adult services, it is reasonable to expect older teen patients to handle most of these logistics and communications independently.

Successful progress from this passive role to active participant has been supported in other health areas with long-term transition plans.^{14 15} We will apply a similar model transition plan for teens with hearing loss and demonstrate how its effectiveness can be tracked with the ICF-CY. For context, we will first provide information on two relevant skill sets: health literacy and self-management of personal health needs.

Health Literacy

Health Literacy Defined

In 2004, the Institute of Medicine defined health literacy as “The degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.”^{16 (p.4)} Since then, health literacy definitions have evolved from capacity to a view toward potential, growth, and empowerment.⁸ For instance, Zarcadoolas et al prefered to define health literacy as “the wide range of skills and competencies that people develop to seek out, comprehend, evaluate, and use health information”¹⁸ (emphasis added). Such development can occur independently on the patient's end, but it also can occur as a result of effective intervention. In other words, as a result of provider support, a patient's health literacy level should increase over time.

Berkman et al listed several definitions of health literacy, but also included their own refinement¹⁹: “Health literacy is the degree to which individuals can obtain, process, understand, and communicate about health-related information needed to make informed health decisions” (emphasis added).^{19 (p.16)}

They added the phrase “communicate about” to the Institute of Medicine's 2004 definition because they considered oral communication skills (listening and speaking) to be a critical part of health care. Ishikawa and Yano agreed²⁰: they point out that, in addition to other functional skills (reading, interpreting graphs, computation, computer use), communication skills are also essential, including the ability to:

• Articulate health concerns

• Describe symptoms accurately

• Ask pertinent questions

• Understand verbal information accurately

Another dimension to health literacy is media literacy, or the ability to critically evaluate media messages in all formats.²¹ Although not mentioned in the health literacy literature, audiologists might want to add understanding/use of technology (apart from computers) as a health literacy skill.

Measuring Health Literacy

Health literacy as measured by the National Assessment of Adult Literacy (NAAL) includes the ability not only to read text, but also to interpret graphs, do basic calculations (numeracy skills), and use a computer.²² The NAAL reports that more than one-third of adults in the United States (77 million) have limited (basic and below basic) health literacy skills. Persons at basic/below basic literacy levels are not able to read or fully understand a newspaper article; fill out forms for Social Security, Medicaid, or Medicare; or follow a bus schedule or calendar.²³ Relatedly, low health literacy is linked to more mistakes in medication usage, more emergency room visits and hospitalizations, and a higher risk of death. Relevant to audiology, it could mean misunderstanding instructions for hearing aid use, misinterpreting Internet sites about cochlear implant candidacy or auditory processing problems, or an inability to complete scales/questionnaires or provide a medical history.

Health Literacy and Teens

Little is known about the health literacy levels among teens,^{24 25 26} partly because the current available tools only assess written comprehension.²⁷ However, we can safely extrapolate from the overall literacy rates of teens as reported by the Nation's Report Card.²⁸ Latest data indicate that only 36% of eighth graders in the United States (ages 14 and 15) read at or above proficient level; math skills proficiency levels were comparable at 35%. In other words, about two-thirds of 14- to 15-year-olds are not proficient in reading and math. These data slightly improve each year but overall, we can assume that most children and youth (with or without disabilities) are likely to struggle with health literacy skills.⁸

Self-Management Of Personal Health Care

Changes May Not Be Anticipated

Teens and their families may not be thinking ahead to the changes that take place once patients are discharged from pediatric services. Compared to child- and family-centered appointments, adult-level audiologic care includes shorter appointments, with the expectation that the patient can:

• Provide accurate and complete information for a case history

• Manage insurance forms and appointments, prescription dosages, and refills

• Communicate effectively (explain symptoms clearly; ask relevant questions; understand explanations and instructions)

If a patient is not fully prepared to participate at this level, he or she can request the accompaniment of a parent or caregiver, of course. Generally, though, families in the United States encourage their children to develop and maintain independence and self-sufficiency in most areas of life. These expectations can be daunting from the perspective of a 15-year-old patient and her family, but they are achievable with planning.²⁹

Preparing for Changes

Under U.S. special education law, students receiving services are required to participate in a transition plan relative to post–high school options (college, vocation training, employment). Several specialties in health care have applied the same concept of transition planning to children and youth living with chronic health issues, including cystic fibrosis,³⁰ sickle cell disease,³¹ diabetes,^{32 33} juvenile arthritis,³⁴ and epilepsy.³⁵ These plans typically incorporate basic principles promoted by the Center for Health Care Transition, a cooperative agreement between the Maternal and Child Health Bureau and The National Alliance to Advance Adolescent Health.³⁶

Pajevic and English recently proposed a model health care transition plan as well as set of health literacy skills for teens with hearing loss (Table 1).³⁷ The transition plan was adapted from a plan developed by the Royal College of Nursing and includes three stages: stage 1 (age 13 and 14), stage 2 (age 14 and 15), and stage 3 (age 16 and 18).³⁸ The skills acquired in each stage depend entirely on the teen's interest, motivation, and maturity levels as well as family engagement, and could address any of the skills in Table 1 at any time, as deemed appropriate and relevant. As important as the skills is the process: with all transition planning, the overarching principles are to (1) start early, (2) maintain measurable progress, and (3) keep the “destination” in mind (in this case, adult health services).

Table 1. Sample Health Goals (Knowledge and Skills)³⁷ .

Explain degree and nature of hearing loss

Explain functional impact of hearing loss

Describe and apply assistive technologies and communication repair strategies

Case history information

Etiology of hearing loss

Family history (hearing loss and other health concerns)

Blood type

History of injuries, illnesses, surgeries, additional health concerns

Current and past medications

Names, contact info of health care providers, insurance, emergency contact info

Fill out intake, self-assessments

Maintain health records

Keep health information and other private data (social security number, etc.) secure

Know basic health terminology (diagnosis, nausea, prescription, antibiotic, etc.)27

Schedule and keep track of appointments

Explain legal rights and accommodations relative to health care

Explain confidentiality and the patient–health care provider relationship

Describe patient autonomy and patient rights

Explain location, intensity, frequency of pain, and other symptoms

Understand explanations, instructions, options, recommendations

The Evidence Supporting Transition Planning

Transition planning appears to be an efficacious practice: for instance, health care professionals in the Netherlands found that when pediatric patients consistently used transition plans, they were more likely to adhere to recommendations, understand the patient–professional relationship, and take a more active role in their health as consumers in the adult care system.³⁹ Although it took time and effort, the overall outcome was considered a positive return on investment. Without such effort, the transfer of care to adult clinics and services becomes haphazard and “involves more of a drift away from pediatric care than a clearly planned and executed handoff.”^{40 (p.182)}

Crowley et al's systematic review indicated that one of the most commonly used strategies in successful transition programs is patient education.⁴¹ The following section will present a proposed transition plan for teens with hearing loss that integrates patient education with skill building, using the ICF-CY as a pathway of care and interactive participation tool.^{13 42} Activity and participation are emphasized in Fig. 2, and will serve as the framework for the case studies following.

Figure 2.

World Health Organization's model for comprehensive care for persons with hearing loss relative to case study: Susan.

Case Study

Susan at Age 13

Susan recently moved into the area and is new to Children's Hospital Audiology. She was born with a bilateral severe sensory/neural hearing loss. She is doing well in school, enjoys track and field sports, and has a couple strong friendships. During a routine annual audiologic evaluation and hearing aid check, the audiologist introduces the topic of health care transition planning; both Susan and her mother are inclined to look ahead and are amenable to participating. The audiologist shares a handout with a list of relevant skills (Table 1) and makes a few suggestions for a starting point. Susan and her mother agree they would like Susan to fully understand her hearing loss; the audiologist asks a few specific questions, which reveal Susan has not yet developed this knowledge base (recorded in Table 2). Acquiring the knowledge and ability to describe her hearing loss becomes a goal for the next time, as well as increasing Susan's responsibilities for appointment management, and understanding how her health care is paid for.

Table 2. ICF-CY (Activities and Participation) for Teen with HL to Address Health Literacy Skills (Transition: Stage 1)*.

Chapter	Code	Domains	Qualifier† Today	Goal for May Appointment
1. Learning, Applying Knowledge	d132	Acquiring info, specifically: (1) about HL and (2) about the cause of HL	(1) 3 (“Same on both sides”); (2) 4 (“Don't know”)	Increase scores from 3 and 4 to 0
	d179	Applying knowledge, specifically health literacy: be able to explain HL and cause to a family member	4	Increase score from 4 to 1
2. General Tasks and Demands	d2400	Handling responsibility, specifically: coordinate with parent to schedule next appointment	3 (“Folks know my schedule, they just do it”)	Increase score from 3 to 0: Susan uses calendar, prepares for appointment and next transition discussion
8. Major Life Areas	d865	Economic transactions, specifically: find out how much appointments cost and how they are paid for (insurance)	4 (“Don't know”)	Increase score from 4 to 1: can generally explain insurance coverage regarding HL

Abbreviations: HL, hearing loss; ICF-CY, International Classification of Functioning, Disability, and Health Child and Youth Version.

*Patient: Susan, age: 13 y 6 mo.

^†Qualifiers: 0 = no difficulty, 1 = mild, 2 = moderate, 3 = severe, 4 = complete difficulty.

Susan and her mother agree to manage most of the goals themselves, but ask for help with understanding and explaining Susan's hearing loss. Later that day, the audiologist e-mails materials to Susan and her family, including relevant chapters from Knowledge Is Power and a website.^{43 44} She encourages Susan to develop her own self-test to bring to the next appointment.

At the next appointment, the audiologist includes time to discuss progress, update her ICF-CY tracking form, and identify new goals. Over time, Susan and her family take the lead in these conversations.

Susan at Age 16

In subsequent appointments, Susan and her family continue to identify health literacy goals, guided by the audiologist and their own concerns. By the time she reaches her 16th birthday, Susan has learned a great deal, assumes reasonable degrees of responsibility, and reports feeling fairly confident about upcoming challenges. That said, she was surprised at her score when the audiologist asked her to complete a 3-minute screening tool called the Rapid Estimate of Adolescent Literacy in Medicine,²⁷ which indicated her ability to read health-related vocabulary was about three grades below her academic standing. She was determined to be able to read and explain each of the words she missed at the next appointment. Other goals were agreed upon as well, including organizing her health records and learning how to manage copays (recorded in Table 3). Her audiologist continues to track her transition to adult care using ICF-CY codes.

Table 3. (Activities and Participation) for Teen with Hearing Loss to Address Health Literacy Skills (Transition: Stage 3)*.

Chapter Number	Code	Domains	Qualifier† Today	Next Goal for: May Appointment
1. Learning, Applying Knowledge	d132	Acquiring info., specifically: (1) Basic health terminology per REALM-Teen27 (2) Family history of all health issues	(1) 2 (score was below grade level) (2) 4 (don't know)	Increase scores from 2 and 4 to 0 = no difficulty/full understanding of terminology and family history
	d179	Applying knowledge, specifically health literacy: Use family history to complete standard intake form	4	Increase score from 4 to 1 = mildly difficult
2. General Tasks and Demands	d2400	Handling responsibility, specifically: (1) Maintain personal health records (2) Keep health info., other private data (SSN, etc.) secure	(1) 4 (haven't started) (2) 4 unaware of risks	Increase score from 4 to 0 = no difficulty: Susan develops a record system, keeps it up to date, keeps data secure
8. Major Life Areas	d865	Economic transactions, specifically: Bring payment for co-pays, keep receipt	4 (haven't done it before)	Increase score from 4 to 0 = fully competent with co-pay obligations

* Patient: Susan W., age: 16 y 4 mo.

^†Qualifiers: 0 = no difficulty; 1 = mild; 2 = moderate; 3 = severe; 4 = complete difficulty

Translating the Icf-Cy into Pediatric Audiology Practice

The end result of the process described previously is a profile of development tracked over time. The process itself is consistent with the National Institute for Health Care Management goal to ensure “the use of developmentally appropriate communication with children to build better understanding of their own health and health care.”^{45 (p.4)} The process is also consistent with a key goal of the ICF-CY, which is to “involve respondents in defining the nature and extent of their functioning in the context of their environments. . . . The use of interview is encouraged with children and youth whenever possible.”^{2 (p.xxi)}

Challenges for Audiology

Using the ICF-CY as a participation tool presents two challenges for the audiologist:

1. To become familiar with the ICF-CY codes and apply them to a transition plan. The codes are flexible; on the other hand, because they are comprehensive, there are hundreds of codes to consider.⁴² However, by focusing on activity and participation codes,² an hour of review will inform audiologists of the range and options. The differences between activity and participation continue to be debated, and in fact the WHO has provided four different ways to define the differences.^{1 (pp.248–251)} In the context of transition planning, it does not seem necessary to overly manage these differences.

2. To acquire a strong background in health literacy, for our own sakes as well as our patients. Coleman defines professional health literacy as the ability to present information “in ways that improve understanding and the ability of people to act on that information.”^{46 (p.71)} Our skills in transforming information into motivation and behavioral change can make all the difference in patient outcomes.

It has been observed that adolescents with hearing loss seem to disappear from our professional literature⁴⁷; however, when the profession begins to track transitional activity and participation progress as well as audiometric data during the teen years, we can develop a database to help us understand where we need to focus our support. A first step would be to agree to a manageable and meaningful set of ICF-CY codes,⁴⁸ and then develop a reporting system that would yield developmental information relevant to this population's needs. A consistent reporting system could benefit both teen patients and audiologists in several ways: teens and families would gradually acquire the knowledge and skills needed for this particular rite of passage⁴⁹ and audiologists would develop a meaningful data set to help further inform our pediatric practices, as well as give more structure, depth, and accountability to our role in rehabilitation.