Neurodevelopmental and Mental Health Screening for Patients with Turner Syndrome in Pediatric Endocrine Clinics: Results of a Pediatric Endocrine Society Survey

Abstract

<b><i>Introduction:</i></b> International Turner syndrome (TS) Clinical Practice Guidelines recommend screening for neurodevelopmental (ND) and mental health (MH) concerns in girls with TS; however, it remains unclear whether this is implemented in current practice. The objective of this mixed methods study was to assess screening practices for ND and MH in girls with TS from the perspective of pediatric endocrinologists. <b><i>Methods:</i></b> Pediatric Endocrine Society members who provide care for girls with TS were invited to complete an electronic survey on screening practices. Descriptive statistics were used to summarize quantitative results concurrently with thematic analysis of free-text survey responses. <b><i>Results:</i></b> A total of 124 surveys were completed (86% attending pediatric endocrinologists, 81% at academic institutions). Overall, 25% of providers reported their patients with TS received both ND and MH screenings. Only 9 (9%) respondents endorsed screening for ND concerns themselves, while more providers (26%) reported they screen for MH concerns. Multiple barriers to screening for ND and MH concerns within the clinical setting were endorsed. Nearly all providers (>93%) reported they would consider using a short, validated screening tool for ND and MH concerns if such tools were available. <b><i>Discussion:</i></b> A minority of pediatric endocrinologists currently perform ND or MH screening for patients with TS, however, many would be interested in implementing a brief screening tool into their clinical practice. Given almost all girls with a TS diagnosis receive care from pediatric endocrinologists at least annually, this may be an effective method to increase the proportion of girls with TS who receive recommended screenings.

Neuropsychological and mental health concerns in a multicenter clinical sample of youth with turner syndrome

“…Patients experiencing internalizing symptoms such as anxiety and/or depressive symptoms may not be recognized due to inadequate screening, recognition of symptoms during brief medical appointments, and/or referral to mental health services. We previously demonstrated that most pediatric endocrinologists do not routinely screen for MHC, with less than half of their patients routinely receiving MHC screening, primarily due to perceived barriers such as time constraints, lack of comfort with screening, and systemic problems in mental health care (Davis et al, 2020).…”

“…Though neuropsychological evaluations are recommended for all individuals with TS in clinical practice guidelines, providers caring for patients with TS are not universally documenting referrals for these services or the outcomes of existing referrals. Barriers to referral for neuropsychological evaluation and mental health services may include discomfort with screening for NC and/or MHC, lack of time to devote to screening for these concerns during the clinic visit, and limited resources for these services in some communities (Davis et al, 2020). The increased frequency of referral for neuropsychological evaluations and mental health services at Site C, the only site with a multidisciplinary clinic specifically for TS including a psychologist and neuropsychologist, suggests that embedding personnel qualified to administer appropriate screening measures may increase referral rates for neuropsychological evaluations.…”

“…Possible contributing factors include deficits in screening practices or non‐standardized screening practices; differences in provider discipline and/or education about NC and MHC in TS; a perception that screening is out of the scope of practice of a medical provider; limits on clinical time enabling adequate screening; differences in the approach to referral; and/or lack of availability of resources in the practice environment. Our previous work has suggested a potential approach to addressing some of these barriers by developing and validating a TS‐specific tool to screen for NC and MHC, and some of this work is underway (Davis et al, 2020; Wolfe et al, 2021).…”

“…Though neuropsychological evaluations are recommended for all individuals with TS in clinical practice guidelines, providers caring for patients with TS are not universally documenting referrals for these services or the outcomes of existing referrals. Barriers to referral for neuropsychological evaluation and mental health services may include discomfort with screening for NC and/or MHC, lack of time to devote to screening for these concerns during the clinic visit, and limited resources for these services in some communities (Davis et al, 2020).…”

“…Although clinical practice guidelines recommend routine screening for NC and MHC in patients with TS (Gravholt et al, 2017), it is unknown whether this is occurring in clinical practice, even within high‐volume centers with multidisciplinary TS clinics that have dedicated psychologists. Our group has demonstrated previously that the majority of pediatric endocrinologists do not routinely screen for NC or MHC in their patients with TS (Davis et al, 2020). It is unclear if other clinicians on an interdisciplinary team are screening for these conditions, or perhaps referring patients for additional evaluation with specialized neuropsychology and/or mental health providers, even in the absence of formal or informal screening for NC or MHC.…”