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Fear and anxiety management for the special needs patient

Linda M. Maytan and Gina M. Terenzi

INTRODUCTION

According to the Department of Human and Health Services Center for Disease Control, developmental disabilities are a diverse group of severe chronic conditions that are due to mental and/or physical impairments. People with developmental disabilities have problems with major life activities, such as language, mobility, learning, self-help, and independent living. Developmental disabilities begin anytime during development up to 22 years of age and usually last throughout a person’s lifetime.

In 1994–1995, the National Health Interview Survey included a Disability Supplement to collect extensive information among individuals sampled as part of annual census-based household interview surveys. In our analysis, we estimate the prevalence of mental retardation in the non-institutionalized population of the United States to be 7.8 people per thousand (0.78%); of developmental disabilities, 11.3 people per thousand (1.13%); and the combined prevalence of mental retardation and/or developmental disabilities to be 14.9 per thousand (1.49%).

Mental retardation, a term that is falling out of favor in the United States, is diagnosed before age 18. Below average general intellectual functioning and lack of skills necessary for daily living are benchmarks. Generally speaking, a combination of well-below-average intellectual functioning plus significant limitations in two or more adaptive skill areas are reason for further testing. Mental retardation affects 1–3% of the general population, with etiology determined in about 25% of the cases. The degree of impairment widely varies across a spectrum of mild to profound. Today, we focus less on the degree of retardation and more on what supports are necessary for the individual to successfully accomplish ADLs (activities of daily living). If the 1% estimate is true, then 2.5 million “retarded people” reside in the United States, with a male prevalence. Ten to 40% of patients with mental retardation also have mental health challenges. Over 25% of children with mental retardation also have a seizure disorder. These combinations can greatly increase communication and behavioral limitations for an affected person. WHO (World Health Organization) mimics these statistics in their findings; however, surveys are often very difficult to accomplish. It is known that disease burden worldwide is not well accounted for, and is increasing. Current trends include changing nomenclature from mental retardation to intellectual impairment, cognitive disability, or neurodevelopmental deficit.

Although there may be facilities in your community that specifically cater to the dental care of the special needs, it is well known that patients with disabilities have difficulties regarding access to care. Additionally, the special needs population is increasing. That said, dentists in the community at large will need to prepare themselves to include this population in their practice.

Management of anxiety and fear for special needs population in the dental setting is dependant on the patient diagnosis and not exclusive to common special care profiles. Not all special needs patients are necessarily fearful of the dentist specifically, but have behavioral characteristics due to their disability that limit completion of any task that is unfamiliar. This chapter will focus on those with intellectual developmental disabilities ranging from mild to moderate limitations, and those with autistic spectrum and pervasive developmental disorders, often referred to as a special needs population.

The literature for anxiety and fear management for special needs patients is historically limited, and more so for studies related to dentistry and special care management. Relaxation and anxiolyitic modalities using sensory perception techniques must be extrapolated for practical use from studies and observations in other behavioral patterns that may be similar to that of special care management and includes pediatrics, geriatrics, mental illness, and those with multiple severe medical comorbidities. The majority of articles written on this topic are by caregiver, healthcare provider observations, and surveys, and are anecdotal, because specific modalities and recommended treatments are limited. Oftentimes, a study will have an insufficient participant number and an inadequate study design that will not allow for placebo effects or control study groups. The exact science of special needs patients’ perception is not well understood, studies are inconsistent with each other, and behavior traits are contradicting. What technique is good for one patient with a given diagnosis is not the same for another.

It is a hope that the authors can provide a collection of material and techniques for clinical management for patient care in the dental setting. This is not meant as an attempt to reiterate articles already written: rather, a practical guide for practitioners wishing to include this patient population into their practice. Time, patience, and realistic goal setting will allow providers, patients, caregivers, auxiliary staff, and others a successful and long-term relationship.

LET US MEET AND EVALUATE YOUR PATIENTS

The special needs population we are generally referring to are those diagnosed with a developmental or acquired intellectual disability, and those diagnosed with autistic or developmental pervasive disorder. Patients with either of these disorders may be placed in the following categories in order to aid the provider determine the ability that the patient to demonstrates relative to accepted life skill needs. This includes aspects of communication skill and social interaction and not solely on IQ relativity. There is no true consensus to these definitions and they should be left to non-bias interpretation by the provider team for individual patient assessments on how the patient is able to tolerate procedures within the practice: They are:

• high functioning;
• mild;
• moderate;
• severe; and
• profound.

According to the DSM-IV,¹ the following criteria have been established as parameters for particular categories of mental retardation (Table 10.1).

Mental retardation is listed on the ICD-10 under Chapter 5, “Mental and Behavioral Disorders,” as F70–F79.² This dissects numerous definitions and subdivisions. For the general dentist and dental team, it is simply useful to know that these levels of mental retardation, as each level indicates certain self-care functions and behavioral limitations.

Table 10.1 Diagnostic criteria for mental retardation (MR): World Health Organization 2007, ICD-1 codes.

• F70 Mild Mental Retardation: Learning difficulties in school. Many adults will be able to work and maintain good social relationship and contribute to society at large.
• F71 Moderate Mental Retardation: Marked developmental delays in childhood but most can learn to develop some degree of independence in the area of self-care and acquire adequate communication and academic skills. Adults will need a varying degree of support to live and work in the community.
• F72 Severe Mental Retardation: Need continuous support for living.
• F73 Profound Mental Retardation: Severe/extreme limitation in self-care, continence, communication, and mobility.

The International Classification of Functioning, Disability, and Health, or ICF, is WHO’s framework for measuring health and disability at both individual and population levels. This tool was endorsed by all 191 member states in May 2001 as the international standard to describe and measure health and disability. A goal of this standard is to recognize the “universal human experience” of experiencing a disability, considering the medical and social factors related to experiencing a disability. Additionally, this parameter focuses on the impact of the disability instead of etiology. This provides a functional assessment tool useful for goal setting, treatment planning, monitoring benchmarks, and outcomes. For the dental team, this type of information is important when considering realistic, attainable, and sustainable expectations.

It is important to remember that these measurement tools are indeed tools. These are not intended as punitive, but rather as a way to aid in the development of a life plan for the affected person. Likewise, it is essential that this information be transmitted on the health history with equal importance to medical comorbidities.

A general health history including the specific limitation is necessary, particularly to identify a specific syndrome. Additional research for a particular syndrome will help the provider to identify similar behavior characteristics. With the completion of the human genome project and the availability of genetic testing, it is likely that your patient will present with quite specific information regarding the genetic etiology of their developmental disability. This information will benefit the practitioner! Soft and hard tissue aberrations, salivary protein changes, dysmorphic odontogenic and osteogenic processes, and other related biologic systems may be coded for on the same DNA segment as the aberration causing the developmental delay.

In addition to a general history, these abbreviated questions from a sensory sensitivity^3,4 may be incorporated, as they are relative to sensitivities that are common to dental treatments. The patient, or in most cases, a patient representative, can answer in yes or no format. Personalize these questions as appropriate. Present yourself as a team member to the patient and staff. Both will be more willing to work with you to achieve a successful outcome.

• unusually sensitive to heat or cold;
• more sensitive to pain than other people;
• unusually insensitive to heat or cold;
• high pain tolerance;
• made uncomfortable by touch or texture of clothing;
• enjoys light brushing or touch;
• likes or seeks out deep pressure or squeezing;
• likes or seeks out gentle vibration;
• unusually sensitive to vibrations;
• unusually sensitive to light;
• bothered by sounds;
• unusually responsive to odor;
• unusually responsive to taste;
• covers ears in response to sound of “high-pitched,” loud noises;
• becomes easily upset or overwhelmed in loud or crowded places;
• overall sensitivity to environment;
• bright lights: room or direct;
• bright colors;
• strong smells; and
• coarse fabrics.

Additionally, does the patient respond better to men or women? This is not unusual, and when possible, a patient with a gender preference should be accommodated. The systematic review of the above will help the provider to determine what may help the patient have a successful visit. For example if the questionnaire is significant for:

(1) Bright light and general environmental sensitivity: The treatment room should be dimmed if possible, and the patient given sunglasses prior to turning on the dental light. If the patient would not allow sunglasses, then direct intraoral lighting may be necessary yet effective for the dental provider, particularly for noninvasive treatments. For dental procedures, there are several products on the market for optimal intraoral visibility that allow the provider hands free illumination of the oral cavity, for example, Isolite Systems (www.isolite.com).

(2) Sensitivity to “texture of clothing”: A towel in place of a dental bib may be considered due to the course nature of the plastic-lined paper. In this case, if there are temperature sensitivity issues, a cold metal bib clip is best avoided, or warmed before use.

(3) Loud noises: General quiet room protocols should be followed, that is, closed operatory door if possible. In these cases, use of the dental drill can be difficult. Providing ear protectors or plugs will help if the patient will allow their use. If not, the hand pieces can be started slowly for the patient to acclimate to the sound. With vibration, particularly for the slow speed hand piece, accommodation for touch may be needed.

The reader can see where we are going here: most events that occur in the dental office and operatory can have considerable impact on whether this patient population has a productive, comfortable visit versus a challenging visit for both the patient and dental team. The majority of actions on the providers’ part need preparation, even those perceived insignificant and routine. With this in mind, the consideration of the sensory questionnaire is therefore an invaluable tool.

Social and communication evaluation questions the dental team should consider will help identify the individual likes and dislikes of the patient. Response to the following questions will give the dental team factors to use in positive reinforcement communication and preparation for visit events:

What are considered the patient’s (your) favorite things? Be specific!

• music;
• people (celebrities, relatives, and friends);
• animals;
• hobbies;
• toys;
• colors;
• foods/flavors;
• activities: that is, bowling, organized sports like Special Olympics; and
• holidays.

The authors have found it useful to take all of these tools and combine them into a product that works in their own offices. Over time, this process of questioning and learning becomes second nature. Needs become clear quite often within the first few moments of meeting a patient and his or her staff/guardian. This will be expanded later in the chapter. Assessment of the patient is an ongoing, evolving process. It is important to develop a sixth sense about social, personal, medical, vocational, and other elements that make up who your patient is. Slight changes to a routine can greatly affect a special care patient for a protracted period of time. Engaging the patient, and secondarily, the direct care staff, during each appointment is a critically important function. The authors make it routine to meet all new patients for the first time in the waiting room. This is extremely effective and important in the journey of trust development. Meeting new people and coming in to an unfamiliar office can be insurmountable for many of these patients. Feeling welcomed into this strange setting by the doctor creates a sense of partnership from the outset, establishes a welcome, and validates the patient as an individual.

Depending on the patient and their ability to adapt, it may take several appointments before that patient feels comfortable entering into the treatment area when called by auxiliary staff (not the dentist). When possible, the initial waiting room meeting includes several intake questions, including dental/medical/social histories. If this would violate the privacy of the patient, then a simple introduction and warm welcome will do, with an invitation to join the author into the treatment room to continue getting to know each other. Many initial visits are conversational only, with a consequent appointment for the x-rays, dental exam, and prophylaxis. Talking to the patient directly, using eye contact, listening, shaking hands, and taking their concerns seriously (commonplace in treatment of your general population patients) is critical. Not only have you validated the patient and their needs to the patient, but also to yourself and your staff.

General characteristics of this patient population in consideration of clinic behavioral management

There is no one therapy for predictable management for the fearful special needs patient but a multifaceted approach dependant on the patients likes and dislikes. Your own biases and the biases of your dental team greatly influence the success of the care for the special needs patient. Additionally, biases of the direct care staff, guardians, case managers, and others involved in the comprehensive needs of the patient will affect the outcomes. Values and beliefs of all parties can come into conflict. Working to dispel distrust and increase partnership for the sake of the oral and systemic health of the client is the core goal. If and when core goals are not in sync, then a referral to another provider is likely in order.

Recognize goals and objectives of visits and how to achieve them, as well as each technique necessary to achieve those goals: It is our experience that building your goals and objectives around a teamwork model is well understood and accepted, and is usually more successful. Recognize the support and auxiliary staff roles to help with tasks associated with outcomes. Validate the difficulty each person may have completing their designated responsibility. This is especially true in high-functioning individuals who refuse help despite the reality that they are unable to adequately perform their own self -care, and in the most impaired patients who may be quite resistive to any ADLs, particularly those which involve the face/mouth. Outlining the oral healthcare plan in as much detail as is appropriate makes the plan concrete. Here are some examples which have worked for us.

The direct care staff will encourage excellent hygiene, perhaps using a point system for the client to accumulate enough for a reward. The authors prefer the reward is not Mountain Dew; rather, a noncaries-causing reward like an outing with a favorite staff, bowling, or the like. Informing the patient that the dentist, his or her mom, or another revered individual, will be privy to the results of points accumulated can serve as added incentive for the client who is “on the fence” about moving forward with oral care.

Home care plans should be as simple as possible, especially initially. Adding one adjunct as the previous adjunct is “mastered” will result in a longer-term success. The authors have historically suggested one implement at a time: first, a battery-operated toothbrush. If successful, then add on an antiseptic mouthwash swab. If accepted, add on floss picks. Patients with touch, sound, or motion sensitivities may not tolerate a battery or other mechanical toothbrush. Do not force the issue! Return to a traditional toothbrush and proceed with adding adjuncts as necessary and appropriate.

This process can take anywhere from months to years to reach its full potential. Remember to consider realistic expectations. Often, the dentist has to reevaluate their own biases to suit the patient. It is also important to recognize the value on oral health the direct care staff holds to be true. Remember, brushing someone else’s teeth can be difficult! If the staff does not brush their own teeth regularly, it is unlikely they will be willing to struggle with a difficult client to attain that client’s oral health goals. It is common for the authors to remind everyone that the oral care plan exists for the good of the client, and that everyone can do the best they can, but not more. When the oral care plan is viewed as a team effort, each person being assigned a role, the motivation and success increase.

We have chosen to discuss noninvasive behavior management techniques in this chapter, which can be used safely and effectively in most dental practices. As it is with the routine dental patient, a provider to patients with special needs will find it helpful to provide care in a calm setting. The authors believe using operatories with closeable doors aid in facilitating a sense of calm and privacy. In the event t/>