The use of parent questionnaires in developmental and behavioral pediatrics

By Mark D. Simms, MD, MPH

Referring physicians frequently ask why parents are asked to complete lengthy questionnaires prior to their child being seen by a developmental or behavioral specialist. The information collected through these questionnaires is an essential part of the diagnostic and therapeutic process.

Health information questionnaires

Developmental and behavioral problems are often the manifestation of an underlying genetic, neurological or physiological disorder, or they may be the result of adverse environmental influences on an otherwise healthy child. It is important to consider all aspects of the child and family's history to reach a correct diagnosis. In most cases, the pattern of change in development over time is extremely helpful in determining the underlying mechanism responsible for the child's current concerns. For these reasons, a comprehensive developmental and behavioral assessment typically takes more time than other health care visits. Having parents complete a health information questionnaire prior to the consultation visit may allow them to recall their thoughts and experiences, and gather information about extended family members, school records, etc.

Norm referenced questionnaires

A wide range of norm-referenced questionnaires is available to provide quantitative ratings of children's behavior and development. These questionnaires allow children to be compared with their age peers to determine their relative standing with respect to particular physical, developmental or behavioral traits. Because children's behaviors may vary from setting to setting, it often is helpful to collect information from a variety of observers. Two of the best-standardized questionnaires for assessing development and behavior are the Child Development Inventory (CDI) and the Child Behavior Checklist (CBCL). These tools have been extensively researched and correlate highly with more comprehensive diagnostic measures. Both are considered "broad band" because they assess a wide range of skills and issues. The CDI consists of 300 questions completed by the parents. It covers the age range from 15 months to 6 years and provides age-level ratings of skills such as social, self-help, gross and fine motor, expressive and receptive language, knowledge of letters and numbers, and general development. The CBCL covers the age range from 18 months to 18 years and includes questions about social, emotional and academic functioning. More specific, "narrow band" instruments include the Vanderbilt, SNAP-IV and Conner's scales. These provide information necessary to make a diagnosis of attention-deficit/hyperactivity disorder (ADHD), and can be used to monitor response to medication treatment.

All norm-referenced tests allow the child's scores to be compared with age- and sex-matched peers. The results can be presented in a graphic format to aid clinical interpretation of the results.

Clinical use of parent report information

Parent report instruments are most helpful in describing and quantifying children's symptoms. However, they do not "make a diagnosis" by themselves. The correct interpretation of the underlying diagnosis and treatment strategy rests on the clinician's skill and training. Helping the child's family and teachers to understand and accept the child's problem is one goal of evaluation.

Many parents gradually become aware of the fact that their child is not behaving or developing appropriately either as a result of their own observations or those of family members, teachers or health care providers. At some point in this process, parents decide to pursue a formal assessment. Completion of a general questionnaire can serve as a first step in helping parents to collect their experiences and thoughts about their child's health, development and behavior. A comprehensive health questionnaire also helps the health care provider structure an interview so important facts and concerns can be identified and clarified in an efficient manner.

Norm-referenced questionnaires should be scored and graphed prior to the consultation visit. The clinician should find an opportunity during the interview to review these results with the parents. This usually provides a chance to confirm the parents' general impressions of their child's problems or alerts the physician to the need for further discussion of the issues before moving on to the next phase of the assessment.

The ultimate goal of the diagnostic evaluation is to understand the nature of the child's symptoms. In developmental and behavioral pediatrics, clinical diagnosis has been referred to as a process of "demystification." Even if a specific cure does not yet exist, rational and effective treatment strategies often follow an accurate understanding of the meaning and cause(s) of the child's symptoms. For parents, acceptance of a diagnosis of a developmental or behavioral disorder may hinge on their gaining insight about the nature of their child's condition. In effect, parents have three opportunities to gain insight during the diagnostic evaluation. The first occurs when they gather their thoughts and recollections regarding their child's health and development to complete the general health questionnaire. The second opportunity arises when the health care provider reviews parents' objective ratings of their child's behaviors and skills. The third opportunity occurs at the end of the evaluation, when the physician summarizes his or her findings and compares them to the parents' own observations and ratings. In most cases, the parents' observations are very accurate, and in many instances their instincts also are correct about the underlying diagnosis.

When the diagnostic process works well, parents gain a better understanding of their child's problems. They then are able to implement interventions and advocate effectively for their child's needs.

Mark D. Simms, MD, MPH, is medical director of Child Development and a child development specialist at Children's Hospital of Wisconsin. He also is chief of Developmental Pediatrics and a professor of Pediatrics at the Medical College of Wisconsin.

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