Concerns and Expectations of Parents Seeking Subspecialist Care for Their Child's Short Stature.

INTRODUCTION: Parents (PP) of children in primary care clinics previously reported factors influencing their height-related medical decision making. However, patients seeking height-related care in endocrine subspecialty clinics and their parents (EP) differ demographically from the general population. OBJECTIVE: To determine EP height-related medical concerns and expectations, and to compare between EP and PP. METHODS: EP completed a survey assessing their concerns in seeking medical care for their child's height with identical questions previously asked of PP and two additional questions about growth hormone (GH) treatment. RESULTS: A greater proportion of the 166 EP (80% response rate) than the 1,820 PP (83% response rate) previously surveyed was Caucasian (75% EP, 41% PP) and privately insured (80% EP, 58% PP). Both groups rated treatment efficacy and risks most as having a bigor extreme impact on decision making (65% EP, 58% PP). The second most rated concern for EP was comparison of child's height to peers or growth chart (60% EP, 32% PP) versus child's health for PP (54% EP, 56% PP). Of the 166 EP surveyed, 76% rated GH treatment as potentially improving quality of life (QoL), with 88% reporting a minimum 3-inch height increase as necessary to improve QoL. CONCLUSIONS: Height comparisons were more likely to impact EP than PP in seeking height-related medical care for their children. EP had high expectations of QoL improvement with GH treatment, which are unlikely to be met with treatment of idiopathic short stature. Thus, clinicians should be prepared to support families in other ways that promote positive development in children with short stature.

Electronic Health Record Mid-Parental Height Auto-Calculator for Growth Assessment in Primary Care.

Primary care providers are charged with distinguishing children with an underlying growth problem from those with healthy variant short stature. Knowing the heights of the biological parents aids in making that decision. This study sought to determine the feasibility and functionality of an electronic mid-parental height (MPH) auto-calculator in the clinical assessment of child growth in a pediatric primary care setting. Clinicians completed surveys for 62% of 6803 children (mean height 13 ± 7 percentile) with recorded parent heights. Collecting parent height data required <30 seconds in 91% of encounters. The MPH tool confirmed clinicians' initial growth assessment in 79% of cases and changed it in 4%; the remainder did not use the tool. Clinicians who changed assessment were more likely (P < .0001) to pursue more comprehensive evaluation. The MPH tool was a quick, functional resource as a component of an electronic health record system in actual, busy, pediatric primary care practices.

Parental Concerns Influencing Decisions to Seek Medical Care for a Child's Short Stature.

AIMS: To examine parental concerns about child growth and factors that drive parents' decisions whether to intervene medically with their child's height. METHODS: Parents of 9- to 14-year-old pediatric primary care patients of various heights, oversampled for those with short stature, participated in exploratory focus groups and nominal group technique sessions. Growth concerns expressed by the groups were incorporated into a survey, completed by 1,820 parents, and rated for their degree of impact on medical decision-making. Ordinal logistic regression modeled concern scores against parent traits. Explanatory focus groups clarified the survey results. RESULTS: Research team consensus and factor analysis organized the 22 distinct concerns expressed by the parent groups into 7 categories. Categories rated as having the greatest influence on parental decision-making involved: treatment efficacy and side effects, child health and psychosocial function. Level of concern was highly associated with parental education and parenting style. CONCLUSION: Psychosocial issues are influential, but parental decision-making is most impacted by concerns about treatment and child health. By discussing the real risks and benefits of hormone treatment and addressing parents' perceptions of what is needed for physical and psychosocial health, clinicians can be highly effective educators to assure that treatment is used only as medically indicated.

How Short is Too Short According to Parents of Primary Care Patients.

OBJECTIVE: Height is a physical trait on a continuum. The threshold between normal and abnormal is arbitrarily set but can potentially influence medical decision-making. We sought to examine parents' perceptions of adult heights and associated demographic factors. METHODS: Parents of pediatric primary care patients of various heights completed a one-time survey. Parents answered the question "How short is too short?" for adult males and females. The results were summarized as median [interquartile range]. Factors significantly associated with height threshold by simple linear regression were included in a multivariable mixed effects analysis of covariance model. RESULTS: A total of 1,820 surveys were completed (83% response rate; 1,587 females, 231 males). The median threshold height deemed too short for adult females was 56 inches [48, 59] among male respondents and 57 inches [50, 60] among females (P<.05). The median threshold height for adult males was 61 inches among males [60, 64] and females [59, 66] (P<.05). The median of male minus female heights per respondent (delta heights) was 5 [2, 7] inches. Factors found to be significant main effects in a parsimonious model were sex of the adult considered, height of respondent, sex of respondent, respondent race, primary care practice, income, and having concerns about their child's height. CONCLUSION: Taller acceptable height thresholds were perceived by respondents who were taller, wealthier, white, female, from nonurban practices, or who had a personal concern about their child's height. Male heights were expected to be taller than female heights. Such traits may influence who is concerned and more likely to seek medical treatment for their children.

Internet informs parents about growth hormone.

BACKGROUND: Parents' knowledge influences decisions regarding medical care for their children. METHODS: Parents of pediatric primary care patients aged 9-14 years, irrespective of height, participated in open focus groups (OFGs). Moderators asked the question, 'How do people find out about growth hormone (GH)?' Because many parents cited the Internet, the top 10 results from the Google searches of 'growth hormone children' and 'parents of children who take growth hormone' were examined. Three investigators independently performed content analysis and then reached a consensus. The results were tabulated via summary statistics. RESULTS: Eighteen websites were reviewed, most with the purpose of education (56%) and many funded by commercial sources (44%). GH treatment information varied, with 33% of the sites containing content only about US FDA-approved indications. Fifty-six percent of the sites included information about psychosocial benefits from treatment, with 44% acknowledging them as controversial. Although important to OFG participants, risks and costs were each omitted from 39% of the websites. CONCLUSION: Parents often turn to the Internet for GH-related information for their children, although its content may be incomplete and/or biased. Clinicians may want to provide parents with tools for critically evaluating Internet-based information, a list of prereviewed websites, or their own educational materials.

Internet peer support for individuals with psychiatric disabilities: A randomized controlled trial.

Despite the prevalence of Internet support groups for individuals with mental illnesses little is known about the potential benefits, or harm, of participating in such groups. Therefore, this randomized controlled trial sought to determine the impact of unmoderated, unstructured Internet peer support, similar to what is naturally occurring on the Internet, on the well-being of individuals with psychiatric disabilities. Three hundred individuals resident in the USA diagnosed with a Schizophrenia Spectrum or an Affective Disorder were randomized into one of three conditions: experimental Internet peer support via a listserv, experimental Internet peer support via a bulletin board, or a control condition. Three measurement time points, baseline, 4- and 12 months post-baseline, assessed well-being by examining measures of recovery, quality of life, empowerment, social support, and distress. Time × group interactions in the repeated measures ANOVA showed no differences between conditions on the main outcomes. Post-hoc repeated measures ANOVAs found that those individuals who participated more in Internet peer support reported higher levels of distress than those with less or no participation (p = 0.03). Those who reported more positive experiences with the Internet peer support group also reported higher levels of psychological distress than those reporting less positive experiences (p = 0.01). Study results therefore do not support the hypothesis that participation in an unmoderated, unstructured Internet listserv or bulletin board peer support group for individuals with psychiatric disabilities enhances well-being. Counterintuitive findings demonstrating those who report more positive experiences also experienced higher levels of distress are discussed but we also point to the need for additional research. Future research should explore the various structures, formats, and interventions of Internet support, as well as the content and quality of interactions. Knowledge generated from such research can help to inform policies and guidelines for safely navigating online resources and supports to gain maximum benefit.