3 approaches for different gauges of child health
In all, domains incorporate family, environment
What is the definition of a healthy child? Just being free of illness isn’t enough, say leading outcomes researchers. For children, assessment of well-being must encompass such varied issues as self-esteem, behavior, family cohesion, school success, and risk-taking, the experts say.
"We’ve been designing instruments to improve the health of kids," says John H. Wasson, MD, research director of the Dartmouth Primary Care Cooperative Information Project (COOP) in Hanover, NH. "When you take it from the vantage point of improving health and not just improving medical care, you come up with a number of domains that make sense."
Some clinicians may question how they can impact family conflict or a child’s ability to make friends. But Jeanne M. Landgraf, MA, who developed the Child Health Questionnaire (CHQ), stresses the need for tools that clue in physicians about a child’s environment and psychosocial issues, including the impact of illness on a family. "We need to put quality of life in the clinical equation," says Landgraf, who is vice president for scientific services of HealthAct, a Boston firm that integrates assessment in the clinical setting. "The CHQ was really developed to give children a voice."
As part of this special issue of Patient Satisfaction & Outcomes Management, we profile three different approaches to assessing the well-being of children. (See examples of each, pp. 133-135.)
1. COOP charts link education with assessment.
Bubble-headed figures with smiles to frowns illustrate the Dartmouth Primary Care Cooperative Information Project (COOP) charts, a visual aid that makes a few of the charts applicable for even very young children, with parental help. When they are expanded and incorporated in a survey for older children and adolescents (ages 10 to 18), the charts trigger specific problem areas that are linked to educational booklets. It is that link between assessment and education that Wasson believes is so important. "Measurement is never enough," he says. "You want to feedback information real time that matters to the patient about those issues."
When researchers gave the charts and accompanying lessons to some 291 teenagers in New Mexico high schools, about a third (36%) reported sharing the lesson with someone outside the school. Three to six weeks after the program, students rated the impact on average as 46 on a scale from 0 to 100.1
In an unpublished study, counselors and researchers used the COOP charts with 407 children ages 10 to 13, many of them from disadvantaged backgrounds in Roswell, NM. They identified 44% of the children as "high-risk" based on their answers about anxious or depressed feelings, risky behaviors, and lack of social support.
While the tool is useful as a screening device, researcher Bob Phillips, MA, LPC, LADAC, is enthusiastic about the self-help educational aspect. Children received individual letters telling them about their results and referring them to sections of manuals if they wanted to learn more. Outreach workers also visited the homes of some students, and some of the children were referred for more intensive counseling or medical help.
"I don’t anticipate that the number of kids who get these letters who change [their behavior] will be large," says Phillips, a counselor with expertise in substance abuse and an instructor at Eastern New Mexico University in Roswell. "But it doesn’t have to be large. It could be clinically significant over time if a few at a time change behavior. It would help a small, but important number of kids over time." For that reason, Phillips believes the COOP charts could be a useful screening and educational tool for physician practices.
Wasson is developing an Internet-based system that would enable families to take the surveys and read educational material at home or in physician offices. For younger children, he is developing an instrument that blends parent and child reports. The surveys ask parents about the child’s functioning, potential health risks, quality of care, and satisfaction.
"What we’re trying to do is first get a description of current health and needs, then risk to future health, then finally health system response," he says.
The COOP charts are designed for easy use by clinicians; a quick glance can reveal a problem area. While the charts can be scanned and scored with software, they do not require an elaborate scoring model. "I tend to use short instruments to find the outliers and then you can go into more detail," says Wasson.
While the physician learns potential problems areas of a patient, just answering the survey can be educational for parents. "So there’s a motive here, when you ask the parent, Are your firearms locked up?’" he says.
2. Clinicians can compare children to norms with CHQ.
For adults, functional health status has become a gauge of health care quality. Simply put, have the patients improved or declined in their physical or emotional functioning?
The Child Health Questionnaire2 (CHQ) is roughly the equivalent of a functional health status survey for children. Yet the domains are more varied, and the health care impact is more complex.
The CHQ’s 14 domains include parental impact-time, parental impact-emotional, family activities, family cohesion, and self-esteem. Extensive testing produced norms for different ages as well as for children with certain chronic illnesses such as asthma, rheumatoid arthritis, and diabetes.2
"It wasn’t designed to be used in a health plan to look at performance," as are health status surveys for adults, says Landgraf, who developed the CHQ as a part of the Child Health Assessment Project at The Health Institute of the New England Medical Center in Boston. "It was designed to be an instrument to help physicians and families, for families to be able to say, This is what’s going on with us,’ and for physicians to say, This is good or isn’t good,’" she says. "We’re just beginning to explore its use in those contexts."
The Child Health Questionnaire can be used with parents of children ages 5 and older, with a self-reported version for children 10 and older. "We wanted to reach the broadest age spectrum," she says.
With a focus on adapting the instrument for use in a busy clinical practice, Landgraf created a 28-question short form for parents. However, the version for older children and adolescents still contains 87 questions. Landgraf is also working with vendors to develop scoring software for the CHQ.
David Sandberg, PhD, a pediatric psychologist, is anxiously awaiting the scoring software so he can use the CHQ to assess his pediatric endocrinology patients who suffer from the emotional impact of short stature. "I would like to compare the quality of life of this patient group with various other patient groups that are seen on a long-term basis [for other conditions]," says Sandberg, who is an associate professor in the departments of psychiatry and pediatrics at the State University of New York at Buffalo.
Because of its norms for different pediatric subgroups, the CHQ offers that potential, he says.
3. Resilience and risk are key domains of CHIP.
Barbara Starfield, MD, MPH, envisions the day when health status drives the way a health system cares for kids. For children, that means looking beyond physical symptoms and functioning to see how they and their families cope.
A university distinguished professor at Johns Hopkins Medical Institution in Baltimore, Starfield finds a disease-oriented approach to quality assessment lacking, even for adults. Her Child Health and Illness Profile (CHIP) focuses on six domains: discomfort, satisfaction with health, achievement of social expectations, risk, resilience, and disease. The adolescent version is completed by children ages 11 to 17.3 A version for children ages 6 to 10, along with a companion parent-completed form, is under development.
"[Typically], you start with people who have disease, and you look at how well they’re cared for," she says. "The problem is that people aren’t diseases. They have complications of diseases; they have diseases that are enormously variable. You can’t use very rigid measures to look at outcomes.
"That’s particularly true for children, who don’t have many diseases," she says. "Our thought is to start with people’s problems. That way you include everyone, not just people with disease. [You determine] the extent to which the health system recognizes what those problems are and then addresses and resolves them."
Designed for populations, not individuals
The CHIP was developed to assess the health of populations, not individuals. But Starfield is working on a short form, and it may evolve into an assessment tool with a broad range of uses. That short form would be more practical in a clinical setting.
In a survey of managed care organizations, she found reason for encouragement. "Well over three-quarters of them are very interested in assessing children’s health status," she says.
Ultimately, Starfield envisions looking at patterns of health status among the domains rather than focusing on one or another as a problem area for a child.
"People who are bad on all the domains need a different intervention than kids who are bad on one," she says.
"The pattern will inform how health services should be organized," she says. "Instead of having clinics for kids with asthma, you will organize care on the totality of health status. There’s more variability within any disease category than across it. [You might have a] clinic for kids who have disease but are satisfied with their health and are very resilient.
"Kids with chronic disease are often very resilient," she says. "You’re targeting the interventions to their needs, not what you’ve defined as their needs."
Starfield acknowledges that this broad view of health care delivery may win few converts from the treatment-oriented approach. "It is a different paradigm, and paradigms are always difficult to change," she says. "It just takes time."
References
1. Wasson JH, Kairys SW, Nelson EC, et al. Adolescent health and social problems: A method for detection and early management. The Dartmouth Primary Care Cooperative Information Project (COOP). Arch Fam Med 1995; 4:51-56.
2. Landgraf JM, Abetz LN. Functional status and well-being of children representing three cultural groups: Initial self-reports using the CHQ-CF87. Psychology and Health 1997; 12:839-854.
3. Starfield B, Riley AW, Green BF, et al. The adolescent child health and illness profile: A population-based measure of health. Med Care 1995; 33:553-566.
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