Although growth failure in children is a sensitive sign that an underlying health problem may be occurring, short stature itself is not a disease. So researchers at The Children’s Hospital of Philadelphia wanted to identify the factors that influence families to seek medical care for short stature, which in some cases includes giving a child nightly injections of human growth hormone.
“Since we know there are gender, racial and ethnic, and socioeconomic disparities between who is short and who receives medical attention for short stature, and the degree of concern is not directly tied to the severity of the short stature, we realized there are other factors at play that kink the pipeline,” said pediatric endocrinologist Adda Grimberg, MD, of CHOP. “Short stature does not affect everyone the same way.”
The research team carried out a four-stage, parent-centered study. In the first two stages, they collected parent comments from group sessions, and then they surveyed 1,820 other parents, followed by another round of focus groups asking parents to interpret and explain findings from the survey. The parents were drawn in equal numbers from urban and non-urban primary care pediatric practices.
In all, parents identified 22 distinct concerns that could influence their medical decision-making about a child’s height. Dr. Grimberg and colleagues published their study in the December 2015 issue of Hormone Research in Paediatrics.
When asked to rate which concerns had a big or extreme impact on their decision to seek medical care for a short child, 58 percent of parents chose treatment characteristics, such as how well it has been proven to work and its side effect risks, and 56 percent chose health concerns, such as whether health issues are causing a child’s short height or whether the child’s short height is causing health issues.
Forty-eight percent of parents said concerns about a short child’s psychosocial functioning had a big or extreme impact on their decision to seek medical care, and 39 percent cited concerns about a child’s success as an adult.
“This study is a good reminder to clinicians that it’s important to carefully review with parents the potential benefits and risks of treatment, and to clearly distinguish health from purely height considerations,” Dr. Grimberg said. “Whether we personally believe that short stature is or is not ‘a problem,’ a considerable number of parents have concerns about current and future psychosocial function.”
CHOP’s Growth Center is dedicated to the clinical evaluation, diagnosis, and treatment of children with disorders of growth and puberty and sees more than 6,500 patients a year. Both parents and clinicians share in the clinical decision-making process, and the degree of parental concern often plays a role in shaping the management pursued by clinicians.
“Listening carefully to family concerns can help improve patient-centered care,” said Dr. Grimberg, who is the Center’s scientific director. In addition to her CHOP position, Dr. Grimberg is on the faculty of the Perelman School of Medicine and a senior fellow of the Leonard Davis Institute of Health Economics, both at the University of Pennsylvania.
The National Institutes of Health supported this study. See the full press release for more information.