Office Behavior and Noncompliance

INTRODUCTION

While all of today’s primary care physicians face great challenges in providing high-quality care, those who care for patients with developmental disabilities face even greater challenges. Many of their patients may have difficulty expressing their symptoms and may be limited in how they can participate in the development of their health care plan. In addition, patients may present challenging behavior while visiting physicians, and may not be able or willing to comply with prescribed or recommended treatment.

CHALLENGING OFFICE BEHAVIOR

Persons with disabilities and/or mental retardation are vulnerable to the full range of behavioral problems, which may include non-cooperation, aggression, self-injury, or hyperactivity. (Return to the index to view a document on Psychiatric Co-morbidity.) Non-cooperation at physicians’ offices is often the result of a patient’s feelings of anxiety. Non-cooperation poses a significant challenge to physicians when a patient’s health depends on being examined and tested, undergoing procedures, taking medications, etc.

On many occasions, physicians may not be able to fully explain to the patient the reasons for performing examinations, tests, or procedures. As a result, it is often necessary to work closely with a parent or caregiver to provide those services that are in the patient’s best interest.

Recommendations

Avoiding conflicts

Develop a personal relationship with the patient to help him or her feel secure and safe
Follow structured patterns and routines at each office visit
Use recognition and empowerment to enlist patient cooperation
Reinforce cooperation with frequent praise
Effectively communicate how and why exams, tests, and procedures are performed
Maintain a positive, supportive environment
If a patient is uncomfortable with an exam or procedure, weight the pros and cons and determine if it is worth performing
Consider alternative methods of drug administration to minimize pain or discomfort (e.g., transdermal or transmucosal routes)
Prescribe treatments that require a lesser degree of invasiveness for follow-up

Counseling and training

Refer for psychiatric evaluation or behavior modification therapy as needed
Refer for speech and language therapy evaluation as needed (see the index for a document on Nonverbal Patients)
Consider referral to communication skills training
Consider referral to compliance training (to teach a patient how to respond appropriately to a variety of verbal or nonverbal requests)

Desensitization

Consider referral for desensitization or relaxation techniques to allay fear and anxiety about doctor visits

Presedation

Consider benzodiazepines (ativan, valium) for patients who cannot cooperate because of anxiety and for whom the above recommendations are unsuccessful
If a patient resists necessary medical intervention, consider psychopharmacologic agents such as neuroleptics, sedative-hypnotics, stimulants, antianxiety drugs, antidepressants and mood stabilizers, anticonvulsants, antihypertensives, and opiate antagonists (According to NIH, behavior reduction procedures should be selected for their rapid effectiveness only if the exigencies of the clinical situation require such restrictive interventions and only after appropriate review. These interventions should only be used in the context of a comprehensive and individualized behavior enhancement treatment package.)

Restraint

Consider using physical restraint if a patient is unable to cooperate with necessary medical intervention and the above recommendations are unsuccessful

General anesthesia

Consider administering general anesthesia if a patient is unable to cooperate with necessary medical intervention and the above recommendations are unsuccessful
If possible, coordinate multiple exams/procedures into one visit (dental, gynecological, etc.)

NONCOMPLIANCE WITH PRESCRIBED TREATMENT

Patients who fail to adhere with prescribed or recommended therapies may be at risk for serious medical problems, and thus present a continuing challenge to health care providers.

Although many persons with developmental disabilities are capable of functioning independently in many ways, most require some sort of assistance from their families or other caregivers. Primary care physicians play a critical role in helping families and caregivers understand and implement treatment therapies, and may be valuable in determining the outcome for the patient and entire family.

Types of Noncompliance and Influencing Factors

Unintentional

A patient misunderstands his or her prescribed regimen because he or she:

Was not sufficiently educated by health care provider;
Has a psychiatric disorder;
Has an intellectual impairment;
Has a memory deficit;
Has a communication deficit; or
Uses improper techniques.

Involuntary

A patient is unable to adhere to treatment because of:

Economic, physical, environmental or personal barriers;
The inability to afford treatment;
Complex medication regimens; or
Limited cohesion and communication with family/caregiver.

Voluntary

A patient makes a voluntary choice to alter or forego therapy because:

Symptoms disappear, so patient sees no need for continuing treatment;
Patient fears side-effects;
Treatment is too confusing, uncomfortable, foul-tasting, etc.;
Obtaining medications is inconvenient;
Patient has a low perceived efficacy of treatment;
Patient perceives costs outweighing benefits; or
Patient has a low degree of concern about the condition being treated.

Recommendations

Preventing noncompliance

Make sure patient/caregiver understands all instructions and recommendations
Discuss what medications to take, what therapies to do, when to contact physician, how to monitor, and how to follow up
Include written, language-appropriate, and reading level-appropriate instructions if necessary
Help establish a regular daily routine
Make polypharmacy regimens as simple as possible
Avoid frequent changes in drugs and doses

Identifying and correcting noncompliance

Monitor adherence to regimen/treatment on a regular and systematic basis
Ask patient/caregiver about adherence to prescribed therapy and if there are any problems
Identify the reason(s) for noncompliance through effective, open-ended communication with patient/caregiver
Take appropriate steps to correct noncompliance based on the identified reason(s)
Refer for psychiatric evaluation as needed
Consider referral for functional analysis and/or reinforcement schedules

REFERENCES

Peer-reviewed Journal Articles/Academies

American Academy of Pediatrics, Committee on Drugs. (1997). Alternative Routes of Drug Administration-Advantages and Disadvantages. Pediatrics, 100(1).

American Academy of Pediatrics, Committee on Psychosocial Aspects of Child and Family Health. (1998). Guidance for Effective Discipline. Pediatrics 101(4), 723-728.

Bond, L. et al. (1997). Attitudes of General Practitioners Towards Health Care for People with Intellectual Disability and the Factors Underlying These Attitudes. Journal of Intellectual Disability Research, 41 (5), 391-400.

Bromley, J and E Emerson. (1995). Beliefs and Emotional Reactions of Care Staff Working with People with Challenging Behaviour. Journal of Intellectual Disability Research, 39(4), 341-352.

Dimond, B. (1998). Noncompliance by Patients. Nursing Ethics, 5(1), 59-63.

Kastner, T., Walsh, K. (1999). Challenging Behavior Problems in Children with Mental Retardation. In: Developmental and Behavioral Pediatrics. (Eds) Parker and Zuckerman. Little Brown.

Olfson, M., Hansell, S., Boyer, CA. (1997). Medication Noncompliance. New Directions for Mental Health Services, 73, 39-49.

Treatment of Destructive Behaviors in Persons with Developmental Disabilities. (1989). National Institutes of Health Consensus Statement Online, 7(9), 1-15.

Special Interest Groups/Other Publications

American College of Allergy, Asthma & Immunology. Patient Noncompliance Often Limits Effectiveness of Asthma Treatment.

Parrish, J. (1996). Behavior Management: Promoting Adaptive Behavior. In ML Batshaw (Ed.), Children with Disabilities (4th ed., pp. X). Baltimore: Paul H. Brookes.

Rubin, I. Leslie and Allen C. Crocker. 1989. Developmental Disabilities: Delivery of Medical Care for Children and Adults. Philadelphia: Lea & Febiger

RESOURCES FOR FAMILIES

The Arc, 800-433-5255,

Home

California Department of Developmental Services, 916-654-1690,

http://www.dds.ca.gov

California Regional Centers, 915-654-1958,

http://www.dds.ca.gov/rc/RCInfo.cfm

Exceptional Parent Magazine, 800-247-8080,

http://www.eparent.com

ADVISORY COMMITTEE

Theodore A. Kastner, M.D., M.S.

Felice Weber Parisi, M.D., M.P.H.

Patricia Samuelson, M.D.

PUBLICATION INFORMATION

Funded by a grant from the California Department of Developmental Services

For more information, contact:

Center for Health Improvement

1330 21st Street, Suite 100

Sacramento, CA 95814

(916) 901-9645

This document does not provide advice regarding medical diagnosis or treatment for any individual case, and any opinions or statements contained in this document are not intended to serve as a standard of medical care. Physicians are encouraged to view the considerations presented in this document in light of evolving scientific information. This document is not intended for use by the layperson. Reproduction of this document may be done with proper credit given to California Department of Developmental Services and the Center for Health Improvement.