Screening for Depression in Adolescents with Developmental Disabilities: Brief Report

Abstract

Objectives:

(1) To examine adherence of universal screening for adolescent depression at initial visits by using an established screening instrument (Patient Health Questionnaire 9 [PHQ-9]) in a university-affiliated urban developmental center that serves children with developmental disabilities (DDs); (2) to study the frequency of positive screening for depression in adolescents with DD.

Methods:

Review of all adolescents referred for multidisciplinary evaluation in a developmental center in 2019. Data included demographics, DD diagnoses, and use of and scores on the PHQ-9 at initial visit. Statistics included chi-square and non-parametrics.

Results:

Of all the children evaluated in 2019 (n = 240), 52 were adolescents, 35 boys (63%)/17 girls (37%), age 14 ± 2 years old, and 27 (54%) belonging to a bilingual English–Spanish household. DD: Developmental Language Disorder (88%), Learning Disabilities (54%), attention-deficit/hyperactivity disorder (44%), Autism Spectrum Disorder (25%), Intellectual Disabilities (12%), and Phonological Disorder (8%). The PHQ-9 was administered to 30 (58%) individuals. Scores varied from minimal depression for 17 (57%), mild for 10 (33%), and moderate and severe for 3 (10%); 3 patients endorsed suicidality. Females were more likely to obtain higher scores on the PHQ-9 than males. Adolescents diagnosed with Autism Spectrum Disorder, Intellectual Disabilities, and Phonological Disorder were less likely to be screened.

Conclusion:

More than half of the sample of urban adolescents with DD were screened for depression at initial visit, and 10% screened positive for moderate to severe depression. Efforts to follow the U.S. Preventive Services Task Force recommendation of universal screening of adolescent depression should continue. However, given challenges with reading and verbal abilities, screening modifications (reading to them) should be considered.

Introduction

Depression in youth is a critical public health concern, and it continues to be under-recognized and undetected (Fallucco et al. 2015), becoming the second leading cause of death among adolescents (Centers for Disease Control and Prevention, National Center for Health Statistics 2020). Children with developmental disabilities (DDs) often present with comorbid conditions, but establishing accurate and reliable prevalence rates of depression in adolescents with DD remains challenging. The literature suggests that depression commonly co-occurs with DD, with prevalence estimates that exceed estimates from the general population (Mayes et al. 2011; Joshi et al. 2013; Hudson et al. 2019). However, challenges to assess this population include limited reading skills and abilities to verbalize thoughts and behaviors, and many times assessment is by caregiver report. Differences in assessments, including the use of self-report versus caregiver report of depressive symptoms, can make diagnosis particularly difficult. The U.S. Preventive Services Task Force 2009 endorsement and 2016 reaffirmation recommends screening in adolescents and adults in clinical practices that have systems in place to ensure accurate diagnosis, effective treatment, and follow-up (U.S. Preventive Services Task Force 2009) but at this time, there are limited data on the prevalence of depression and the practice of universal screening for depression in children with DD. Screening for depression in youth with DD continues to be a challenge, as current evidence is lacking in this area, and most treatment decisions are extrapolated from research on typically developing youth or adults (Chandrasekhar and Sikich 2015).

In 2018, as part of a quality improvement initiative, our center, an affiliated University urban center that serves children and adolescents with DD, established a model of reliable, feasible, and routine depression screening for all adolescents, using the Patient Health Questionnaire 9 (PHQ-9)-Modified for Adolescents (Kroenke and Spitzer 2002) for all adolescents seen at initial developmental visit and at yearly follow-up, using a paper-based questionnaire. The PHQ-9 Modified for Adolescents is a reliable and valid measure of depression (Kroenke et al. 2001), and it can be given to adolescents to screen for mild, moderate, moderately severe, and severe depression. Because of its availability and ease of scoring, the modified PHQ-9 can help ensure that depression screening is not overlooked in a busy clinic. In the case of children who are nonverbal, it was recommended to note in the medical records that assessment was attempted but unable to be completed.

The objectives of the study were to examine, in an urban clinic for individuals with DDs, the adherence of adolescent screening for depression at initial visits using the modified PHQ-9, and the frequency of positive screening for depression and suicidality in adolescents with DD.

The study was approved by the organization's Scientific Review Committee and Institutional Review Board.

Methods

Sample

A review was conducted of all adolescents (12 and up) who were evaluated by a multidisciplinary developmental team that assesses school age children and adolescents in an urban university affiliated center, from January through December 2019. The center is located in a large metropolitan area, which has a substantial Hispanic population, and referrals are received from parents, pediatricians, and schools. Youth were referred for evaluation to the clinic to determine whether the adolescent had DDs, including learning disabilities, developmental language disorder, autism, attention-deficit/hyperactivity disorder (ADHD), and underwent a systematic multidisciplinary evaluation involving a developmental pediatrician, psychologist, and speech and language pathologist, using standardized testing. Developmental diagnoses are given after evaluations are completed, based on the Diagnostic and Statistical Manual of Mental Disorders 5th Edition (DSM-5; American Psychiatric Association, 2013). Diagnosis of learning disabilities is based on DSM-5 criteria and includes learning disabilities in reading, written expression, and math. Data reviewed included age at initial visit, sex, monolingual English versus bilingual English–Spanish household, type of DD, cognitive testing results, use of Modified PHQ-9 and scores at initial visit, and assessment of suicidality.

Analyses

Descriptive statistics were used to calculate, describe, and summarize the collected information, which was reported in the manuscript text and tables. Screening for depression using the PHQ-9 at initial visit was compared by developmental diagnoses and demographics (age, gender, language spoken at home) using chi-square and independent t-test and by cognitive testing using non parametrics (Wilcoxon Rank Test). Statistical significance was defined as p < 0.05, with two-tailed tests used throughout. All analyses were performed by using SPSS software (SPSS, Inc., Chicago, IL).

Results

Of all children evaluated by the multidisciplinary team during that period (n = 240), 57 were adolescents and 5 (9%) were nonverbal; thus, they were excluded from the study. Analysis was based on 52 adolescents, who were verbal, 35 boys (63%)/17 girls (37%), mean age 14 ± 2 years old, and 27 (54%) living within a bilingual English–Spanish household. In terms of medical diagnosis, 2 (4%) had seizures, 8 (16%) suffered from headaches, and 15 (30%) were obese. Of the 52, 9 (18%) had a previous diagnosis of anxiety and 17 (34%) had a previous diagnosis of ADHD; 12 (24%) were receiving stimulant medication. All children had 1 or more DD (Table 1), with the most frequent being Developmental Language Disorder (88%); 40 (75%) had more than 1 developmental diagnosis. Cognitive testing results were available in 32 patients.

Table 1.

Child Demographic Characteristics and Developmental Diagnosis by Screening Status (N = 52)

Characteristics	Screened for depression N = 30	Not screened for depression N = 22	Total N = 52	p ^a
Mean age ± SD, years	15 ± 2	14 ± 2	14 ± 2	0.2^b
Sex, male/female, n (%)	21 (70)/9 (30)	14 (55)/8 (45)	35 (67)/17 (33)	0.6
English–Spanish household, n (%)	16 (59)	11 (41)	27 (55)	1
Developmental diagnosis, n (%)
Language impairment	28 (62)	17 (38)	45 (86)	0.1
Phonological disorder	0	4 (100)	4 (8)	0.02
Learning disabilities (any)	18 (64)	10 (36)	28 (54)	0.3
In reading	13 (65)	7 (35)	20 (38)	0.3
In mathematics	15 (65)	8 (35)	23 (44)	0.3
In written expression	8 (57)	6 (43)	14 (27)	0.1
ADHD, combined type	6 (43)	8 (57)	14 (27)	0.1
ADHD, inattentive type	6 (75)	2 (25)	8 (15)	0.4
Autism spectrum disorder	4 (31)	9 (69)	13 (25)	0.04
Intellectual disabilities	1 (17)	5 (83)	6 (11)	0.02
More than 1 developmental diagnosis	22 (55)	18 (45)	40 (77)	0.2
Other diagnosis
Anxiety	12 (80)	3 (20)	15 (29)	0.05
Depression	8 (80)	2 (20)	10 (19)	0.1
Oppositional defiant disorder	2 (50)	2 (50)	4 (8)	1
Cognitive testing available, n (%)	21 (70)	11 (41)	32 (61)
Full scale intelligence quotient, mean ± SD	87 ± 17	87 ± 18	82 ± 18	0.7^c
Verbal comprehension index, mean ± SD	92 ± 17	77 ± 17	87 ± 17	0.02^c
Visual spatial index, mean ± SD	89 ± 13	82 ± 11	87 ± 12	0.2^c
Fluid reasoning index, mean ± SD	89 ± 17	75 ± 17	86 ± 16	0.04^c
Working memory index, mean ± SD	92 ± 16	80 ± 18	88 ± 17	0.09^c
Processing speed index, mean ± SD	82 ± 14	76 ± 20	80 ± 16	0.3^c

Bold entries denote statistical significance.

Chi-square test.

Independent t-test.

Wilcoxon rank test.

ADHD, attention-deficit/hyperactivity disorder.

The PHQ-9 was administered to 30 (58%) individuals at their initial developmental visit. Scores varied from minimal depression (score 0–4) for 17 (57%), mild (score 5–9) for 10 (33%), moderate (score 10–14) for 1 (3%), and severe (>15) for 2 (7%). Girls were more likely to obtain higher scores on the PHQ-9 than boys (7 ± 6 vs. 3 ± 3; p = 0.04). There were no other differences in PHQ-9 scores by age of the child or language spoken at home. In terms of diagnoses, there were no differences in PHQ-9 scores by specific developmental diagnoses, medical conditions, previous treatments, or if the child had two or more diagnoses or previous diagnoses.

Three patients endorsed suicidality, and they were further assessed by clinicians. Based on the Suicide Assessment Five-Step Evaluation and Triage (SAFE-T) (2021), patients had thoughts of death with no plan, intent, or behavior, and the suicide risk was categorized as low.

Patients who were not screened for depression at initial visit were more likely to be diagnosed with Autism Spectrum Disorder, Intellectual Disabilities, and Phonological Disorder (Table 1). There were no differences in demographics or other developmental diagnoses between those who received the PHQ-9 and those who did not. In terms of cognitive testing, children who were given the PHQ-9 had higher Verbal Comprehension and Fluid Reasoning Index scores.

Discussion

In 2019, more than half of the sample of urban adolescents diagnosed with DD (58%) were screened for depression at initial visit and 10% screened positive for moderate to severe depression. Children with poorer language abilities and those diagnosed with Autism Spectrum Disorder and Intellectual Disabilities were less likely to be screened.

This is one of the few reports screening for depression in the literature for adolescents with DD. The rate of universal screening for depression for adolescents in pediatric offices or school-based offices has been variable since the recommendation from the U.S. Preventive Task Force (Bhatta et al. 2018), with higher screening rates in older adolescents (screening rate 76%; Farley et al. 2020) and after implementing quality measures (Sudhanthar et al. 2015; Lewandowski et al. 2016).

Ideal screening instruments are brief, easy to understand for patients, simple to score, available without cost, and have strong performance characteristics. The PHQ-9 depression screener was developed for administration among adults in primary care settings, and it has been shown to have good sensitivity and specificity with adolescents (Richardson et al. 2010). The PHQ-9-Modified includes minimal adjustments to the original PHQ-9 to incorporate characteristics of depression in adolescents and age-appropriate language. However, the reading grade level of this instrument is sixth grade (CMS Center for Clinical Standards & Quality 2015), which is problematic for adolescents with reading weaknesses. In this sample, children diagnosed with Autism Spectrum Disorder, Intellectual Disabilities, Phonological Disorder, and/or low verbal abilities were less likely to be screened.

In the case of youth with DDs, “accommodations” similar to those recommended for school may be considered (Goegan and Daniels 2018). Although accommodations are common in educational facilities for assignments and testing situations, the use of accommodations in clinical practices or research have received much less attention (Goegan and Daniels 2018) and may generate questions about the reliability and validity of results. The PHQ-9 has been successfully used via phone (Pinto-Meza et al. 2005); so, as a first step, it may be read effectively to patients if they are unable to read accurately themselves. If the patient is unable to understand the meaning of the questions, clinicians can explain them. Unfortunately, the validity of the PHQ-9 using such accommodations is unknown. The use of parallel parental report questionnaires to supplement the self-report information may be useful. Making screening and questionnaire tools more accessible to participants with DDs is important, as well as examining their reliability and validity utilizing specific accommodations. Given the need for improving awareness of depression among adolescents, especially those at higher risk, this topic should be examined in a prospective, structured manner.

There were no differences in the use of the PHQ-9 by demographics, including age of the child, language(s) spoken at home, or sex in our study. In a national representative sample, depression screening is less likely to occur during visits for Hispanic adolescents compared with non-Hispanics (Zenlea et al. 2014). As a university affiliated center treating an urban, ethnically diverse group, and as previously reported (Kabarriti et al. 2020), differences in care and outcomes by race and ethnic groups was not prominent. However, in our sample, girls were noted to have higher scores, consistent with what had been previously reported in the literature (Salk et al. 2017).

It remains unclear whether traditional depression measures can accurately detect depression in youth with DDs, due to symptoms overlapping (Cassidy et al. 2018). In this study, the percentage of adolescents with PHQ-9 scores in the moderate to severe range was 10%, slightly higher than those described in the literature for typical development (7%; Farley et al. 2020). This result should be taken with caution, as the sample was small. Such discrepancies may be related to different research methodologies and challenges that are present with reading and verbal abilities in adolescents with DDs for whom it may be difficult to answer questions required on the screenings. It may represent, as previously described in the literature, that depression commonly co-occurs with DDs, with prevalence estimates that exceed estimates from the general population (Mayes et al. 2011; Hudson et al. 2019). In this sample, the only predictor of a positive screen for depressive symptoms on the PHQ-9 was being a female (Chin et al. 2016). Other factors, such as specific developmental diagnoses, were not significant but the sample is small. Although it is imperative to recognize that this study reflects results from a small sample, continued research should be conducted with larger samples to potentially replicate the said findings of a slight increase in moderate to severe depression on PHQ-9 screener among adolescents diagnosed with DDs.

The limitations of this study included retrospective methodology and sample size; however, it represents the extent of yearly screening done by clinicians for new adolescent patients with DDs. Further prospective multicenter research, reporting specific accommodations, may be necessary.

Efforts to follow the U.S. Preventive Services Task Force recommendation of universal adolescent depression screening should continue, especially in a population of adolescents with DDs. However, given the challenges that are present with reading and verbal abilities in this group, screening modifications and accommodations should be considered. Further studies such as reading said screeners to this population who may have reading/writing/comprehension challenges may help identify additional adolescents diagnosed with DD with depression and, in turn, potentially provide more access to treatment and improve mental health outcomes.

Clinical Significance

In an urban clinic for children and adolescents diagnosed with DDs, the adherence of adolescent screening for depression at initial visits using the modified PHQ-9 was 58%, where 10% screened positive for moderate to severe depression. Adolescents diagnosed with Autism Spectrum Disorder, Intellectual Disabilities, Phonological Disorder, and/or low verbal abilities were less likely to be screened. Given that suicide attempts are increasing, and as shown in our study, depression is prevalent in adolescents with DD, efforts to follow the U.S. Preventive Services Task Force recommendation of universal screening of adolescent depression should continue. However, given challenges with reading and verbal abilities in DDs, screening modifications, such as reading to them, should be considered.

Footnotes

Disclosures

No competing financial interests exist.

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