2
Diagnosis, Evaluation, and Disability
This chapter lays the foundation for an understanding of assessment in individuals with severe conditions that can cause disability. The committee describes processes and techniques for diagnosing and evaluating serious physical health conditions, including the attributes and limitations of various diagnostic and evaluative approaches as well as the differences between capacity and performance in assessments of functioning. The committee also addresses considerations in the use of diagnostic and evaluative tests to assess children.
DIAGNOSING HEALTH CONDITIONS
In the context of disability, an individual’s diagnosis is relevant because, as stated in Chapter 1, to receive Social Security Administration (SSA) disability benefits an individual must have a “medically determinable physical or mental impairment” for a continuous period of at least 12 months. A medically determinable physical or mental impairment is an impairment that results from anatomical, physiological, or psychological abnormalities that can be shown by medically acceptable clinical and laboratory diagnostic techniques (SSA, 2022).
Diagnosis of a medical problem is a process (NASEM, 2015). Generally speaking, once an individual seeks health care for a symptom or medical problem there is an iterative process of information gathering, information integration and interpretation, and determining a working diagnosis. Taking a clinical history, conducting a physical exam, performing or ordering diagnostic testing, and referring or consulting with other clinicians are
all ways of accumulating and integrating information that may be relevant to understanding an individual’s health problem. The information-gathering approaches can be employed at different times, and diagnostic information can be obtained in different orders. The continuous process of information gathering, integration, and interpretation involves hypothesis generation and updating prior probabilities as more information is learned (NASEM, 2015). Synthesis of the information from this iterative process allows the clinician to diagnose and develop a treatment or management plan with the patient.
The Use of Techniques in Diagnosis and Evaluation
The process of arriving at a diagnosis includes determining the cause or nature of a health condition by evaluating the symptoms, signs, and test findings. Diagnostic criteria are a collective set of symptoms, signs, and tests that are routinely used clinically in the care of patients (Aggarwal et al., 2015). Many diagnoses do not have pathognomonic findings, that is, findings that are characteristic of a particular disease or condition and that determine the diagnosis. Because health conditions and people are heterogeneous, diagnostic criteria tend to be broad (Aggarwal et al., 2015).
A test that is used, either alone or with other tests, to confirm the presence of a condition for which a threshold of a measurable phenomenon must be reached for the diagnosis to be made, is considered a diagnostic test. A classic example of a diagnostic test is a urine culture that measures colony-forming units per milliliter to diagnose a urinary tract infection. Evaluative tests, by contrast, are tests that assess the level of a measurable phenomenon and that can aid in a diagnosis in cases for which a specified threshold is not needed to make the diagnosis. Generally speaking, many tests are both diagnostic and evaluative. For example, echocardiograms are commonly used as both a diagnostic test and an evaluative test. An echocardiogram measures ejection fraction in patients in heart failure and helps clinicians distinguish between reduced versus preserved ejection fraction, which is needed for a proper diagnosis; the test also measures the level of left heart impairment by quantifying the ejection fraction (Hajouli and Ludhwani, 2022). An example of an evaluative test that does not aid in diagnosis of a disease is the functional independence measure (FIM) (Keith et al., 1987). This instrument assesses functioning in 18 different domains and is used to track rehabilitation progress. Like the FIM, evaluative tests are often used to understand how the disease and its treatment affect the functional outcomes in patients.
In general, evaluative tests are understood as tools to assess health and functional status (Stucki et al., 2003). Many evaluative tests are diagnosis agnostic, meaning they can be used to assess functioning for a range of
health conditions, while others are specific to a particular population or disease category (Stucki et al., 2003). These tests may be administered or be reported by the patient, such as the use of standardized patient-reported outcome measures (Cella and Hays, 2022).
The range of evaluative tests and their outcomes can be described using the International Classification of Functioning, Disability and Health (ICF) framework: impairments at the level of the body part or structure, limitations at the level of a person’s activities, and restrictions in participation in life events (WHO, 2002). (The ICF model is shown in Chapter 1, Figure 1-3.) For example, an echocardiogram measures functioning at the level of a body part, while the 6-minute walk test measures limitations at the level of a person’s activity of walking. The 6-minute walk test does not diagnose the etiology of exercise intolerance or the source of dyspnea but can be used to evaluate before and after treatments or interventions (Crapo et al., 2002). Thus the 6-minute walk test is an example of an evaluative test that is not also a diagnostic test, although it may be used in the diagnostic process for assessment of severity.
To complicate matters, the International Classification of Diseases (ICD) does allow for the use of R codes for symptoms, signs, and abnormal clinical and laboratory findings, although they are not generally allowed as a primary diagnosis. The R codes are mainly to be used prior to reaching a definitive diagnosis or if a definitive diagnosis cannot be made. For example, the 6-minute walk test could lead a health care provider to code R26.2 (difficulty walking) as a temporary diagnosis. The R codes do help demonstrate an important linkage between the ICF and the ICD—that is, the obtaining of information about patients’ experiences and the clinical findings. The use of evaluative tests that capture functioning can create a fuller picture of a person’s health and can be used to map functioning and track the benefit, or lack thereof, of an intervention (Üstün et al., 2003). In fact, the ICF is intended to be used in a complementary fashion to the ICD (Escorpizo et al., 2013). The ICD classifies disease entities, while the ICF classifies functioning and the influences on functioning (Escorpizo et al., 2013). Notably, in the ICD-11, the World Health Organization (WHO) has begun to integrate the ICF (functioning) and International Classification of Health Interventions (ICH with the ICD, demonstrating the link between function and disease, with function as a consequence of disease (WHO, 2022).
Barriers to Timely Diagnosis
Most diseases evolve over time, and there can be a delay between the onset of a patient’s symptoms and the time of diagnosis of disease (Zwaan and Singh, 2015). Alternatively, a person may be diagnosed with a disease
without having any noticeable symptoms of the disease. Furthermore, disability associated with many diseases tracks with severity, meaning that a person might have a diagnosis that is only disabling when it is severe. Reflecting the variability and complexity of disease presentation, some diagnoses can be determined in a very short timeframe, while months may elapse before other diagnoses can be made. Similar symptoms may be related to a number of different diagnoses, and symptoms may evolve in different ways as a disease progresses; for example, a disease affecting multiple organs may initially involve symptoms or signs from a single organ. At the outset, it can be very difficult to determine which particular diagnosis is indicated by a particular combination of symptoms, especially if symptoms are nonspecific, such as fatigue. Diseases may also present atypically, with an unusual and unexpected constellation of symptoms (Emmett, 1998).
In addition, when considering diagnostic testing options, the potential harm from the procedure itself needs to be weighed against the potential information that could be gained. For example, in some patients the risk of invasive diagnostic testing may be inappropriate due to the possibility of mortality or morbidity from the test itself (such as cardiac catheterization, invasive biopsies, or certain imaging tests). Concerns about the overuse of medical imaging techniques that employ ionizing radiation (such as computed tomography, fluoroscopy, and nuclear medicine studies) may affect decisions about the use of these techniques in certain patients. Research shows that children are more radiosensitive than adults and that cancer risks increase in patients with cumulative radiation exposure. The U.S. Food and Drug Administration and other partners are working to reduce unnecessary radiation exposure from medical imaging and are encouraging “a balanced public health approach [that] seeks to make sure that each person will get the right imaging exam, at the right time, with the right radiation dose” (FDA, 2019). These considerations may limit the availability of diagnostic data.
Challenges in Obtaining Diagnostic Information
Improving Diagnosis in Health Care (NASEM, 2015) found that language, health literacy, and cultural barriers can affect clinician–patient encounters and increase potential challenges in the diagnostic process (Flores, 2006; IOM, 2003. For example, obtaining a history can be challenging in some cases when working with older adults with memory loss, with children, or with individuals whose health problems limit communication or reliable self-reporting (NASEM, 2015). Furthermore, language barriers are associated with miscommunications, decreased satisfaction and poorer quality of health care delivered (Al Shamsi et al., 2020).
There are indications that systemic biases influence diagnosis; one well-known example is the differential referral of patients for cardiac catheterization by race and gender (Schulman et al., 1999). In addition, women are more likely than men to experience a missed diagnosis of heart attack, a situation that has been partly attributed to gender biases, but which may also be the result of physiologic differences, as women have a higher likelihood of presenting with atypical symptoms, including abdominal pain, shortness of breath, and congestive heart failure (Pope et al., 2000).
In addition, the availability of specific tests (e.g., certain cardiovascular tests and psychological batteries) that are valid and potentially useful to disability evaluations may be limited by costs and by individuals’ access to specialized health care. Relevant health care data may not be easily available because an individual may lack insurance coverage or be underinsured, or the means of obtaining the information needed may be denied by insurance as not medically necessary. There may also be structural barriers to the aggregation or sharing of health care data; e.g., different electronic health records systems may not be integrated or interfaced. Health disparities and health care inequities can have a significant impact on the collection of health information available to inform disability determinations. In the United States, lower socioeconomic status is associated with less access to high-quality care and health care professionals (IOM, 2001, 2003), including those with expertise in providing information on functional status relevant to disability determinations.
ASSESSING FUNCTIONAL STATUS
SSA’s five-step evaluation process, described in Chapter 1, considers function at several points. Functional criteria are built into some of the listings in the Listing of Impairments that SSA considers at step 3 (SSA, 2022a). Examples of the functional criteria for some of the conditions addressed in the report are shown in Appendix A. SSA also considers function in its assessment of applicants’ physical and mental residual functional capacity (RFC) at steps 4 and 5. An RFC assessment is based primarily on medical evidence but may also include an observation or description of limitations; it describes what an individual is able to do, despite functional limitations resulting from a medically determinable impairment(s) and impairment-related symptoms, and is an administrative determination of an individual’s capacity to perform work-related physical and mental activities (excerpted from SSA, 2023). SSA gathers functional information from the applicant, relevant health care providers, and third parties about the applicant’s impairment-related symptoms, such as pain, that may affect what he or she can do in a work setting.
In Chapter 1 the committee explained that function at the level of the whole person, i.e., activity, reflects the outcome of the interaction between
the capabilities of individuals and the demands of the environments in which they perform these activities (see Figure 1-3). In a comprehensive disability assessment, the fit between an individual’s capabilities and job demands needs to be measured and examined. This information is especially important at steps 4 and 5 of the adjudication process.
Furthermore, SSA’s disability evaluation relies on identifying a primary condition (i.e., impairment in SSA terminology) for which the applicant alleges disability. However, national health data indicate that people with disabilities, especially adults, have multiple chronic conditions which, depending on the severity of these conditions, may combine in unique ways to effect function at the activity level and subsequently their ability to participate in work (Aubert et al., 2022; Ryan et al., 2015). Considering that the majority of SSA applicants have co-morbidities (Walker and Roessel, 2019), the evaluation of whole person function reflects a more robust way to examine the collective effects of these conditions. A later section, Functional Capacity and Performance, elaborates on how functional status is affected by the presence of multiple impairments in one or multiple organ systems as well as personal and environmental contextual factors (Anner et al., 2012; NASEM, 2019).
Currently there is no single measure of an individual’s overall physical functional status that evaluates impairments, activity limitation, and participation restrictions, the three domains of disability in the ICF model, necessitating the use of multiple assessments. Below is a broad overview of the types and attributes of functional assessment tools, as well as factors affecting the availability of information about an individual’s functioning. Information in these sections was adapted from the 2019 NASEM report Functional Assessment for Adults with Disabilities.
Measures of Functioning
Functional measures require an individual’s attempt to complete a task or set of tasks to assess their abilities. Consistent with the three levels of ICF functioning, functional tasks may assess a person’s ability at the body function or structure level, such as test of grip strength using a dynamometer; may test their ability to perform an activity, such as turning a doorknob, writing with a pencil or opening a jar; or may assess their ability to participate in society, such as being able to vote unassisted, play tennis or work as a cashier in a store (Kjeken et al., 2005). Functional assessments may assess whether the individual can complete the task in a controlled environment (capacity) or in their own environment (performance). Capacity is measured in a standardized environment and is defined as the individual’s highest potential to execute a task or action (Jette et al., 2008). Diagnostic and evaluative tests tend to be conducted in this way. The 6-minute walk test, for
example, has well-developed protocols associated with it and includes guidelines about the setting, instructions, and administration (Enright, 2003). Performance is what the person does in his or her own environment with or without the use of assistive devices or personal assistance (Jette et al., 2008). For example, in the case of submaximal walking, there are numerous environmental variables and personal factors that can influence an individual’s walking speed. When these factors inhibit an individual’s ability to conduct the task day-to-day, the difference between capacity and performance can be substantial. Because individuals do not live in controlled environments, their performance tends to be lower than their capacity. When walking, the terrain, noises, the ability to stop and rest, encouragement to be safe and slow down, and personal factors such as desire to get to the intended destination can all influence the performance of submaximal walking speed. Furthermore, a person’s limitations in one functional domain can influence performance in another functional area. For example, visual acuity can affect one’s walking and navigating a terrain. In an assessment of capacity, the impacts of the environment influences and other health factors can be minimized by controlling the setting and administration (Holsbeeke et al., 2009). When neurocognitive tests are performed, for example, if an individual has hearing or visual impairments, testing protocols will account for this so that the individual being tested is being tested on cognition, not on ability to take in information auditorily or visually. In a natural, non-testing setting, individuals with hearing or visual impairments cannot control how information is presented to them while performing cognitive tasks and may not be fully accommodated in non-controlled, everyday settings. Thus, tests that measure actual performance of a task may be better suited to understanding an individual’s ability to perform substantial gainful activity.
Nonetheless, measures of functioning assess a variety of physical and cognitive skills and can help determine an individual’s ability to participate at a desired level in an occupation or to return to work in a safe and timely manner without functional limitations or with accommodations for existing functional limitations (Reiman and Manske, 2011). A broad range of physical performance-based measures exist, such as trunk endurance testing, tests of movement patterns, excursion reach testing, jumping tests, hopping tests, strength testing, power testing, aerobic endurance testing in multiple planes of movement, lifting tests, balance/proprioceptive testing in multiple planes of movement, and speed, agility, and quickness testing (Reiman and Manske, 2011). For comprehensive information about many of these performance-based measures and the various types of functional assessment instruments used in disability assessments, the committee refers readers to NASEM (2019).
To maximize accuracy, measures of physical capacity should be administered by specialized personnel, typically a physical or occupational
therapist, which, unfortunately, increases their cost and limits their availability. These measures provide relatively objective assessments of physical functioning. However, their results are subject to several confounders, including age, gender, education, pain duration, pain intensity, pain-related disability, employment status, physical work demand level, and work organizational policies and practices (Kuijer et al., 2012). Two other factors that should be considered are the individual’s psychological and social status at the time the test is administered (Reiman and Manske, 2011; Toure-Tillery et al., 2014; Vowles et al., 2004). Performance on a test in a controlled setting (referred to in the ICF as capacity) does not completely correlate with performance in actual life. In short, performance-based measures have been shown to be instructive, but application of their results to an individual’s work ability should be interpreted with caution (NASEM, 2019).
Patient-Reported Questionnaires
Standardized questionnaires may be used when gathering a history to inform the diagnostic or evaluative process. These patient-reported instruments may be self-administered, administered by a medical or other provider, or completed by a proxy, such as when parents report on the severity of symptoms on behalf of their children. Generally, questionnaires can augment, but do not replace, history taking, which is an essential component of medical care (Summerton, 2008). History taking or the medical interview is considered the most powerful, sensitive, and versatile tool available to clinicians (Engel and Morgan, 1973; Keifenheim et al., 2015). In combination with the medical interview, standardized measures can help quantify and track symptoms or outcomes. Patient-reported measures are commonly used to have individuals assess their pain and function and have also been used to measure or approximate individuals’ functional status. Dedicated patient-reported functional measures exist for nearly all body regions and conditions. Many self-report instruments have been carefully evaluated for reliability, responsiveness, and validity, and much work has been dedicated to the development of these tools (Reiman and Manske, 2011).
There are four basic types of self-report instruments: (1) integrated, (2) impairment-specific, (3) body part- or region-specific, and (4) patient-specific. Each type of instrument usually has a specific purpose, and each has advantages and disadvantages that have bearing on its potential utility. An example of an integrated assessment instrument is the Medical Outcomes Study 36-Item Short Form Health Survey (SF-36) (Tarlov et al., 1989), which is a widely used and accepted self-report instrument with evidence to support its use for diverse pathological conditions. It is not a tool specifically for the functional assessment of physical abilities, but it combines the assessment of physical and mental or emotional symptoms.
Impairment-specific instruments may not capture the additive or multiplicative effects of multiple impairments or comorbidities on an individual’s ability to function. Body part- and region-specific instruments are generally used to address only the injury mechanisms and disease states affecting the particular body part or region of focus. Patient-specific measures are tailored for each individual and facilitate the tracking of findings relevant to the individual patient. An example of an evaluative patient-specific tool is the Patient-Specific Functional Scale, which asks patients to identify specific activities they have difficulty performing and rate their performance on a scale of 0–10. Patients then repeat the rating of their performance at a subsequent clinical visit after an intervention such as physical therapy has occurred (Kowalchuk Horn et al., 2012; Nicholas et al., 2012; Sterling 2007). If a patient-specific instrument is used, generalization across patients may be misleading (Martin and Irrgang, 2007; Westaway et al., 1998).
Factors Limiting the Quality and Quantity of Information on Functional Status
As with health care data necessary to establish a diagnosis, valid and potentially useful information about a person’s functioning may not be readily available in an applicant’s record for many of the same reasons discussed, such as uneven access to specialized tests, testing facilities, and health care professionals and related factors associated with socioeconomic status and geographical location. Additionally, in Functional Assessment for Adults with Disabilities (NASEM, 2019), the study committee determined that functional assessment instruments vary in the degree to which they have been tested, adapted, or validated across diverse populations, making it important to consider an instrument’s performance across multiple subgroups. The committee concluded that assessment instruments developed for research applications may not account for developmental, cultural, linguistic, or literacy factors, such as limited English proficiency or low literacy, which may limit access to such assessments. This may mean that few or no assessments are available that can provide valid and reliable information for some populations.
Social Determinants of Health and Disability
In considering disability, understanding what the person is able to do in their typical environment and how the person is able to perform tasks can be more illustrative than objective measures of capacity that eliminate actual environmental and personal factors. Evaluative tests that measure a person’s ability to perform tasks without environmental controls more accurately reflect that individual’s ability to perform tasks than assessments
of capacity because there may not be environmental modifications or controls in the person’s day-to-day life. From an intervention perspective, when capacity is greater than performance usually some aspect of the environment is acting as a barrier to performance (Üstün et al., 2003); it may be possible to improve a person’s performance by addressing some of these environmental barriers (Üstün et al., 2003). Conversely, factors that positively affect an individual’s performance are called facilitators (Schneidert et al., 2003).
Taken together, the personal and environmental facilitators of and barriers to carrying out functional tasks are considered contextual factors by the International Classification of Functioning, Disability and Health (ICF) (Schneidert et al., 2003). (The ICF model is shown in Chapter 1, Figure 1-3). Recognizing that environmental factors outside of the control of the individual strongly affect health and functioning is a central tenet of the ICF (WHO, 2002). Environmental contextual factors include products and technologies, the natural and human-made environment, supports and relationships, attitudes, services, systems, and policies (Bilbao et al., 2003). Personal contextual factors are the particular backgrounds of individuals’ lives, their desires, their character, and their behaviors (Geyh et al., 2011). Contextual factors, as framed by the ICF, can be used to describe the social determinants of health—the conditions into which people are born and in which they live, learn, play, and grow up (Marmot et al., 2008). These social determinants are the most important determinants of one’s health, and while individual choice and behavior are important, social factors shape these lifestyle factors as well (Marmot et al., 2008; Satcher, 2010). The experience of disability is greatly influenced by social factors. Poverty, for example, is a cause and strong predictor of the presence of disability and, when present, of its severity. Furthermore, disability is a cause of poverty (Palmer, 2011). When considering the major drivers of health disparities (i.e., avoidable differences in health) and health care inequities (lack of access to available care for equal need), poverty and discrimination and their downstream consequences are the major contributors (Braveman, 2006; Braveman et al., 2018). Individuals with disabilities have variable access to health services that could improve their health and functioning (Mitchell et al., 2022). Certain individuals with disabilities are multiply marginalized based on oppressive forces such as racism or other environmental factors such as living in a rural locale (Hayes et al., 2023; Robbins et al., 2022).
Practically speaking, what this means among individuals with certain diagnosed conditions is that their health and functioning may vary greatly based on their access to high-quality health services and supports. A person with lower limb loss, for example, may be ambulatory with a prosthetic but without access to one may be reliant on a wheelchair for mobility instead.
That same individual may need a revision of the residual limb (another surgery and hospitalization) if an acquired pressure wound does not heal adequately, which could further decrease the individual’s functioning. Even when two people are diagnosed with the same health conditions, they may have experienced vastly different social determinants of health and circumstances, and, as such, their associated disabilities may be markedly different.
CONSIDERATIONS IN THE USE OF DIAGNOSTIC AND EVALUATIVE TESTS TO ASSESS CHILDREN
As described in Chapter 1, to qualify for disability a child must have “a medically determinable physical or mental impairment, which results in marked and severe functional limitations, and which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months” (SSA, 2022b). In this case an impairment should result from anatomical, physiological, or psychological abnormalities that can be demonstrated by medically acceptable clinical and laboratory diagnostic techniques.
The approach to assessing the health of children using diagnostic and evaluative tests differs from that used for adults. For children, the primary source of symptom information and clinical history often comes from the parent or guardian, with portions provided by the child, depending on his or her age and developmental status. Generally, as children age they become more capable of providing information about their symptoms and other pertinent information. Similarly, patient-reported symptom and outcome measures are often filled out on behalf of the child by the parent and are termed proxy reports. There is evidence that parents report more symptom burden and lower quality of life on questionnaires than children report for themselves (Baggott et al., 2014; Mack et al., 2020; Marques et al., 2013; Montgomery et al., 2021).
The diagnostic tests used to assess impairments in children are often similar to the ones used in adults but with established normal ranges based on age, development, and size. For example, interpreting radiographs in children requires an understanding of the timing of expected ossification, changes in the relative size of structures as children age, and how clinically meaningful findings may present differently in children compared with adults. Other tests, such as genetic tests, may be used in children in the same way that they are used in adults.
Understanding the developmental trajectory in children is crucial to understanding how measures of physical functioning differ for children compared with adults. Young children are not expected to be able to perform complex physical tasks, and they require opportunities to build upon rudimentary skills to develop the capacity to perform more developmentally
advanced tasks. Table 2-1 shows the expected timing of physical skills for young children. Notably, some of these skills, while primarily gross or fine motor tasks, may also require visual acuity and cognitive skills.
Because of the expected developmental trajectory in childhood, instruments that assess functioning need to take into account the expected developmental stage for norming purposes. For example, the WeeFIM, the pediatric version of the FIM, is validated for age 3 and up and uses developmental functional quotients to standardize scores by age (Msall et al., 1994; Watson et al., 2021). This allows the child to be scored based on the amount of help he or she needs to complete a specific task, with the score then converted to a value that is comparable with the scores of other children regardless of age; a typical young child is not expected to perform a complex task, such as lower body dressing, while a typical older child is expected to do so independently. Another commonly used instrument to
| Age (years) | Physical Developmental Milestones |
|---|---|
| 1 |
Pulls up to stand |
|
Walks holding onto furniture |
|
|
Drinks from a cup held by another person |
|
|
Picks up small objects between thumb and pointer finger |
|
| 2 |
Uses switches, knobs, or buttons on a toy |
|
Uses one hand to hold an object and the other to manipulate (e.g., removing the lid from a container) |
|
|
Kicks a ball |
|
|
Runs |
|
|
Walks (not climbs) up a few stairs with or without help |
|
|
Eats with a spoon |
|
| 3 |
Strings items together (e.g., beads) |
|
Dons some clothing (such as jacket or loose pants) |
|
|
Uses a fork |
|
|
Can draw a circle after demonstration |
|
| 4 |
Catches large ball most of the time |
|
Serves food or pours liquids for himself (with supervision) |
|
|
Unbuttons some buttons |
|
|
Holds pencil between thumb and fingers (not in a fist) |
|
|
Draws a person with three or more body parts |
|
| 5 |
Buttons some buttons |
|
Hops on one foot |
|
|
Writes some letters that appear in their name |
|
|
Simple home chores (e.g., clearing the table after eating) |
|
SOURCE: Adapted from Zubler et al. (2022).
assess disability in children is the Pediatric Evaluation of Disability Inventory Computer Adaptive Test (PEDI-CAT), which assesses children in four domains: daily activities, mobility, social/cognition, and responsibility; the scores are normed with age percentiles. The PEDI-CAT maps to the ICF domains in activities and participation (Dumas et al., 2012a,b, 2017; Haley et al., 2011; Thompson et al., 2018). There is a plethora of other tools that can be used to assess developmental status or functioning in children, many of which cannot be used in adults (Long et al., 2005; Ottenbacher et al., 1999, 2000). Similarly, many adult functional assessment tools are not appropriate for children and have not been validated for use in children. One notable exception is the 6-minute walk test, described in Chapter 3, which has been assessed as highly acceptable to children as young as 3 and easy to perform, with norms down to age 4 (Geiger et al., 2007; Lammers et al., 2008; Priesnitz et al., 2009).
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