May 1997 ~ Volume 5, Number 3

The Child Health Questionnaire:
Design and Application

Recently approved for distribution by the Medical Outcomes Trust, the Child Health Questionnaire (CHQ) is an instrument which yields 14 health concepts and summary measures of physical and psychosocial functioning and well-being for children five years of age and older. The CHQ assesses a child's physical, emotional, and social well-being from the perspective of the parent/guardian, or in some cases, the child him/herself.

The Child Health Assessment Project at The Health Institute was initiated in 1990. The impetus for the project was the lack of well-validated, comprehensive assessment tools designed to measure outcomes in child populations. According to Jeanne Landgraf, MA, Principal Architect, the Project aimed to develop an instrument that would be well-grounded in both theory and application, and would allow children to objectively rate the way they feel and report on the impact of disease in their lives. "The CHQ is a vehicle intended to give children a voice. It enables them to say 'This is who I am'."

The result of the Project was the CHQ, of which there are two versions: the CHQ-PF 50 (and short form 28) is completed by the child's parent or guardian, while the CHQ-CF 87 can be completed by children 10 years of age and older. The CHQ has been normed in a representative sample in the US, and has been translated into 13 languages (Spanish, Canadian-French, Finish, French, German, Dutch, Italian, Greek, Honduran, Mexican, Norwegian, Portuguese, and Swedish).

At the commencement of the Child Health Assessment Project, the content of available generic instruments for children was reviewed, and a common set of core concepts emerged from that review and previous measurement experiences. Those exercises yielded the 14 health concepts found in the CHQ. To follow are brief descriptions of each of those concepts:

There are two ways to score and report data for the CHQ: overall means for the individual CHQ scales and items can be derived using a simple summated ratings approach (this method yields a profile of each of the 14 concepts); the individual scale scores can also be aggregated to derive two summary component scores of physical and psychosocial health. Scores can be compared to a representative sample of children in the U.S., while preliminary profiles for some child conditions have also been collected. To facilitate further application of the CHQ, development of state-of-the-art administration, processing, and scoring systems are currently being discussed.

The CHQ has been shown to be useful in comparing groups of children within HMO's, doctors' offices, schools, clinical trials, and large population based research efforts (IE, Medicaid). Clinical benchmarks exist for asthma (both in HMO and clinical trial samples), attention deficit disorder, epilepsy, psychiatric disorder, and juvenile rheumatoid arthritis. Landgraf comments that the CHQ has not yet been applied in any "case study" efforts perhaps due to our own conceptualizations. "We typically think of case studies as having a beginning and an end, however, we need to go beyond that and apply the CHQ in seamless ways, by focusing on the use of information to assess the impact of care."

Studies utilizing the instrument for outcomes research are just getting underway, and Landgraf attributes this largely to the newness of the field. Recently the CHQ was used to aid in the establishment of a school-based clinic in Pennsylvania. The aim of this collaborative project is to collect baseline data about the health of students in order for nurses to make informed decisions about students reporting illness (IE, should a student be sent home or given medication). The thrust of this initiative is to decrease the number of school days missed by students, as well as the number of days of work missed by parents. Data collection for the first year has been completed, and the CHQ will be used to assess students' health periodically. Results thus far are forthcoming in the December 1997 Journal of Psychiatry and Health. Regarding the results, Landgraf says, "I was impressed with the outcomes-- the kids look relatively healthy, however, this initiative isn't really about 'results'... this initiative, with such concern and exemplary dedication to the needs of children, spoke volumes about what collaboration really is- the bringing together of science and application."

Another study in which the CHQ was applied occurred in a group practice of asthma/allergy specialists. Payors were concerned about whether or not patients were empowered to self-manage their condition. In this instance, the CHQ was used in concert with other instruments, and Landgraf feels that the embedding the CHQ in larger questionnaires is going to be a very widespread application.

Due to the complexities inherent in research with pediatric populations, Landgraf emphasizes the importance of administrative issues (IE, when to administer, to whom, in what form) when thinking about applications of the CHQ, or other tools, for children. It is likely that widespread distribution of the CHQ will provide further insight to its application and use.

For questions about the CHQ, Jeanne Landgraf may be reached at (617) 375-7800.

BASIS-32: Behavior and Symptom Identification Scale

The BASIS-32 (Behavior and Symptom Identification Scale) was designed to assess outcomes of mental health treatment from the patient's, or client's, perspective. This brief, yet comprehensive, measure of self-reported difficulty in major symptom and functioning domains that lead to the need for inpatient psychiatric treatment (the instrument can be used in outpatient populations as well) has been recently approved by the Medical Outcomes Trust.

Developed on a psychiatric inpatient hospital population, the BASIS-32 asks for the degree of difficulty, rated on a five-point scale, the respondent has been experiencing during the past week. The 32 items assess five major areas in terms of difficulty and/or distress: relation to self/others, daily living/role functioning skills, depression/anxiety, impulsive/addictive behavior, including substance abuse, and psychosis. This instrument is appropriate for use with populations aged 14 and older, and should be administered at appropriate points in the treatment process (usually at intake, termination, and at a follow-up point).

According to Sue Eisen, PhD, Principal Architect of the BASIS-32, the instrument was developed because while there were several instruments available to measure outcomes in outpatient populations, few adequately represented all of the problems that brought people to inpatient treatment. The BASIS-32 can be incorporated into the clinical care system at this level through routine assessment at admission, and the information obtained through the BASIS-32 can be used to better plan a course of treatment. Furthermore, by comparing responses from admission and discharge, it is possible to quantitatively determine whether a patient feels his or her condition has improved and, if so, in which specific areas of symptoms or functioning. Change can thus be analyzed both at the individual level, and at the aggregate level within particular programs, which can facilitate the detection of trends in outcomes, for better or worse.

While the BASIS-32 was developed for inpatient populations, it can be used in outpatient populations, although obtaining follow-up information from this population can prove to be difficult. According to Eisen, "Application in this population depends upon the acceptance of the whole process, and this usually depends on how well the BASIS-32 is integrated into the system." Eisen believes that success with this population has to do with administration efforts- refusal rate is quite low when clinicians work the BASIS-32 into the visit, as opposed to having support staff administer the survey in the waiting room. McLean recently completed a collaborative outcome study of mental health outpatients using the BASIS-32. This study included 400 patients, and provides evidence of the psychometric robustness of the BASIS-32 when used with outpatients.

As for other caveats related to administration, Eisen said that it is important to consider who may be unable to complete the BASIS-32, based on a condition (IE, severe dementia) or level of alertness (IE, sedation due to medication). At McLean Hospital in Belmont, Massachusetts, where Eisen is the Assistant Director of the Department of Mental Health Services Research, strategies have been devised to facilitate administration, including the use of laminated cardboard scales that the respondent can use to "show" a response to a verbal reading of the BASIS-32. "We do not know the percentage of those who are unable to complete the BASIS-32, in the past it was around eight or ten per cent, but often times, by waiting a day, a client may become more stable clinically," said Eisen. During the first half of 1995, 77 percent of patients at McLean completed the survey either at admission or discharge; 35 percent completed both.

McLean currently uses the BASIS-32 to look at the immediate impact of hospital care, as opposed to long-term or after-care results. The BASIS-32 has been incorporated into the clinical care system since 1994 and patients have consistently reported feeling better after inpatient care. The BASIS-32 has also shown to be useful for raising consciousness regarding a client's readiness for treatment.

In terms of limitations of the BASIS-32, Eisen stressed, "It was not designed to replace clinical assessment- it should be used instead as a supplement." She stated that as for realistic goals of the BASIS-32, after resolution of an acute episode, one can hope to maintain the level where the client was at prior to such an episode. She also stressed that clinicians or researchers using the BASIS-32 should be realistic when setting goals for its application.

The BASIS-32 has been requested for use by more than 1,000 health care organizations in the United States and abroad. Currently, several managed care organizations, consulting companies, and performance measurement developers are looking at the possibility of the BASIS-32 playing a role in terms of decision support. While the instrument was not designed for such purposes, the potential does exist to assess the utility BASIS-32 for making clinical decisions, such as when to discharge a patient or change treatment. Also, McLean will be submitting a performance measurement system, of which the BASIS-32 is a part, to the Joint Commission on Accreditation of Healthcare Organizations (JHACO), to be considered for approval as part of JHACO's ORYX Initiative.

Ruth E.K. Stein, MD
Newest Member of the Scientific Advisory Committee

Over the last twenty years, the field of pediatrics outcomes has certainly seen significant growth and development, however, Dr. Ruth E.K. Stein, the newest member of the Scientific Advisory Committee (SAC) fears that such progress could be slowed if managed care focuses solely on adult outcomes for chronic conditions. In her estimation, this attention is a direct result of the prevalence and high cost of adult chronic conditions.

Stein, Professor and Vice Chairman of the Department of Pediatrics at Albert Einstein College of Medicine, specializes in children with special health care needs, including children with disabilities and children with chronic conditions. She became interested in such a populations(s) while completing her residency, during which time she faced intense exposure to children with special needs- Stein was responsible for enrolling such children in a comprehensive care program. She later applied the knowledge gained from that experience when she accepted the challenge of studying outcomes of a chronic care program. Specifically, her introduction to the field of outcomes was that of assessing whether or not sending chronically ill children home, as opposed to keeping them in a hospital, made a difference.

According to Stein, children with chronic conditions- conditions that once led to early mortality- are now living well into adulthood, and while as children they may have faced many of the same day-to-day issues as did healthy children, little is known about the psychological and emotional ramifications of having grown up contending with chronic conditions. Stein feels that this is one area of outcomes research that definitely needs further addressing. She advocates for a shift towards long-term outcomes, as well as research which crosses disease lines. "Many times there is more variation within a disease than across disease. All children with diabetes are not like one another- it is important to study how factors such as family structure and socioeconomic status interplay with a chronic condition."

In terms of how special needs children could benefit from standardized outcomes assessment, Stein feels that epidemiologically, the chronic conditions which afflict children are quite unusual, with the exception of certain highly prevalent conditions such as asthma and cerebral palsy. "We don't necessarily need to do restrict ourselves to disease-specific outcomes research in this population. Morbidity in this population is not assessed well only within diagnostic categories."

While she is hopeful that the development of instruments focused on pediatrics outcomes will proliferate, she is aware of potential barriers which could impede such efforts, one of the larger obstacles being that of funding. "There is little appreciation for the time and effort involved in developing instruments. The emphasis is instead on biomedical research."

It is the hope of the Trust that with Stein on the SAC, there will be more visibility of, and interest in, pediatrics outcomes efforts from the larger outcomes field. Conversely, Stein hopes that her participation will generate more interest in outcomes and the work of the Trust among her colleagues in the pediatrics community.

© 1997 MEDICAL OUTCOMES TRUST