Minding the Gap: Adolescent and Parent/Caregiver Reporter Discrepancies on Symptom Presence, Impact of Covariates, and Clinical Implications

Abstract

Introduction:

Primary care practitioners (PCPs) provide care to adolescents in the context of their families. Supporting parent/caregiver (parent) knowledge of symptoms as well as communication around symptom experiences can create opportunities for better recognition of adolescent symptoms and augment early access to identification, intervention, and prevention of poor outcomes related to anhedonia and depressed mood.

Methods:

This is a cross-sectional comparison of parent-reported versus adolescent-reported symptom presence of anhedonia and depressed mood in participants of the ABCD Study.

Results:

Large discrepancies exist between adolescent and parent-reported presence of symptoms.

Discussion:

Improving understanding of the etiology, covariates, and patterns of discrepancies may improve primary care assessment, adolescent access to care, and intervention for adolescents and their families. Further, providing education to families about symptom features, working to improve adolescent-caregiver communication, promoting adolescent advocacy, and connecting families to community resources are important attributes of primary care and areas of adolescent and family functioning that PCPs can strengthen.

Introduction

Primary care providers (PCPs) are key in providing preventative care, and in the early recognition and intervention of compromised well-being. Nurse practitioners are the principal group of healthcare providers delivering primary care to many populations in the United States including those likely to be underserved (Naylor et al, 2010). Family nurse practitioner (FNPs) and pediatric nurse practitioners (PNPs) treat young children, 89% of PNPs report treating children primarily covered by Medicaid, and 74% report currently accepting new patient with Medicaid (AANP, 2021). With the reality comes the great responsibility of protecting adolescent privacy while promoting parent/caregiver and adolescent communication and interaction. It is a difficult and important task with potentially significant consequences for family functioning and adolescent psychopathology.

Background

The Adolescent Brain Cognitive Development (ABCD) Study is an ongoing longitudinal multisite study providing significant data about the health of 11,875 adolescents over a decade. The ABCD study® is approved by the institutional review board of the University of California, San Diego (IRB# 160091). In addition, the institutional review boards for each of the twenty-one data collection sites also received approval for the study. Informed assent was obtained by the adolescents in the study and informed consent was obtained from all parents. Access to ABCD study data can be acquired through registration with the ABCD study at https://nda.nih.gov/abcd. One of the survey instruments incorporated into the ABCD Study is the Kiddie Schedule for Affective Disorders and Schizophrenia for DSM-5 (KSADS-5). The KSADS-5 has well-established reliability and validity (Ang et al, 2020). KSADS-5 collects information from both parents and adolescent on the presence or absence of various symptoms. As issues with adolescent mental health and suicidality have worsened, our efforts to understand the gaps, work to build bridges, and provide an arena for bidirectional communication and respect is key to promoting adolescent and family wellbeing. It is important to report that the ABCD team suggest that adolescents’ self-report is likely to provide more accurate assessment of the presence or absence of symptoms. The ABCD Study reports three evidentiary reasons for this difference in accuracy between parent and youth report including; parent and youth reports start to diverge early in adolescence, youth report has improved predictive utility, and finally, a parent’s mental health can bias their report of the presence of related symptoms in their youth (Barch et al., 2018). The intent of the current study is to quantify the reporting gap for the symptoms of anhedonia and depressed mood by parents and adolescents. Findings from this study may benefit primary care providers by helping them proactively consider potential gaps and provide improved assessment of family functioning, pro-active support for improved communication within families, as well as guide clinical practice around patterns which support the age at which private, client-focused subjective histories are obtained in early adolescence. Further, we study covariates that have the potential to impact this relationship and describe our results.

Anhedonia, the lack of ability to feel pleasure, and depressed mood are the lead symptoms in the DSM-V criteria for the diagnosis of depression. Both symptoms, by definition, would lead one to hypothesize that the parent and adolescent perspective of the symptom evaluation would agree. However, there is evidence that especially in early adolescence the parent and adolescent perspective diverge (Ang et al, 2020). Adolescents also begin to complete at least portions of their health visits with their providers without their parents at age 11 years. Adolescents are developmentally working on their self and social identities. There are societal expectations that the adolescent begins to function more and more independently.

Supporting both adolescence development and privacy as well as parent and adolescent communication and interaction is immensely difficult. Gaps in their perspectives can make the clinical intervention of bridging those gaps challenging. Providers who know of the potential gaps can more keenly assess and support interventions that provide improved adolescent and family outcomes. For this reason, the study explores the gaps and the covariates that may play important roles in potential discrepancies between adolescent and parent perspectives of the presence of anhedonia or depressed mood.

Methods

A comparison of the parent and adolescent perspectives on the presence of anhedonia and depressed mood was completed from the first interview data from the ABCD Study. Included are the 11,878 adolescent participants of which there are (11,805 reports related to these symptoms) and their parent/caregiver reports which will be referred to from hereafter as parent reports. The ages of the participants at the time of the first interview were between 9 and 12 years. The symptoms, anhedonia and depressed mood are available in the ABCD data set from the Kiddie Schedule for Affective Disorders (K-SADS) survey. The K-SADS has a high interrater agreement. The ABCD Study used a computerize self-administered version which has kappas in the good to excellent ranges and a high percentage agreement with the pen-and-paper version (88–96%: Carter, 2020). A cross-sectional analysis of the data was performed and frequencies, t-test scores, and correlations were analyzed using the statistical software JASP.

Results

There were 6,103 nine to ten-year-olds, 5,504 ten to eleven-year-olds, and 130 eleven to twelve-year-olds. There were 6,196 male and 5,682 female participants and their parent(s) in the survey data. The descriptive statistics and frequency tables for anhedonia_p (for parent) and anhedonia_t (for adolescent)) and depressed mood_p (for parent) and depressed mood _t (for adolescent)) are included in Table 1. The scores for each of the symptoms are binary. The adolescent or parent reports them as “0” for negative/no symptom present or “1” for positive/symptom is present. symptom. Analysis of the differences in reporting by adolescents and their parents around the symptoms of anhedonia and depressed mood, stratified by the covariates of sex, race, income, and education are also included in Table 1.

Table 1.

Descriptive and frequency result table for symptom reporting by adolescent and parent

Covariate	Adolescent-reported Positive Anhedonia	Adolescent-reported Negative Anhedonia	Parent-reported Positive Anhedonia	Parent-reported Negative Anhedonia	Anhedonia Symptom Positive Percent Gap	Adolescent-reported Positive Depressed Mood	Adolescent-reported Negative Depressed Mood	Parent-reported Positive Depressed Mood	Parent-reported Negative Depressed Mood	Depressed Mood Symptom Positive Percent Gap
Total cohort	569	11236	271	11466	52.4	288	11517	102	11635	64.6
Stratification by Sex
Males	334	5829	154	5979	53.9	153	6010	55	6078	64.1
Females	235	5407	117	5487	50.2	135	5507	47	5557	65.2
Stratification by Race/Ethnicity
White	193	5957	86	6041	55.4	71	2321	24	2339	66.2
Black	160	1613	86	1676	53.8	3	248	0	249	100
Hispanic	156	2236	60	2303	61.5	64	1709	18	1744	71.9
Asian	3	248	2	247	33	118	6032	47	6080	60.2
Other	57	1180	37	1197	64.9	32	1205	13	1221	59.4
Stratification by Age
9–10 years	289	5774	134	5897	53.6	158	5905	40	5970	74.6
10–11 years	267	5207	131	5309	50.1	125	5349	59	5362	52.8
11–12 years	7	122	1	126	85.7	2	127	0	127	100
Stratification by Baseline Household Income (household.income.bl)
<50K	243	2957	135	3031	44.4	105	3095	50	3116	52.4
50–100K	145	2915	52	2978	38.1	85	2975	19	3011	77.6
>100K	105	4429	43	4459	59	64	4470	22	4480	65.6
Stratification by Parent/Caregiver Highest Education (high.educ)
Less than HS	57	529	31	542	45.6	28	558	9	564	67.9
HS/GED	84	1040	52	1051	38.1	38	1086	13	1090	65.8
Some college	224	2835	109	2928	51.3	95	2964	38	2999	60
Bachelor’s	117	2877	42	2919	64.1	65	2929	22	2939	66.2
Post graduate degree	86	3943	35	3973	59.3	62	3967	18	3990	70.9

A Wilcoxon signed-rank paired samples (parent/adolescent dyad) t-test was performed (Table 2). The t-test compared the means of the total percentages for the reporters’ score and then the percentage scores based on reporter. Descriptive plots comparing sample means and 95% confidence intervals for the t-test are depicted in Figure 1. The plots describe significant discrepancies for both reporter comparisons (both p<.001), with higher difference in those reports of the presence of the symptom of anhedonia. Figure 2 is a heatmap of Spearman’s rho analyses illustrating the correlative relationships between variables, and variables and covariates.

Table 2.

Paired Samples T-Test

						95% CI for Rank-Biserial Correlation
Measure 1	Measure 2	W	p	VS-MPR*	Rank-Biserial Correlation	Lower	Upper
Anhedonia_t	- Anhednonia_p	207726.0	1.64e −25	3.937e +22	0.375	0.303	0.442
Depressed Mood_t	- Depressed Mood_p	49413.0	2.11e −22	3.500e +19	0.512	0.419	0.595

^*Vovk-Sellke Maximum p -Ratio: Based on a two-sided p -value, the maximum possible odds in favor of H₁ over H₀ equals 1/(-e p log(p)) for p ≤ .37 (Sellke, Bayarri, & Berger, 2001).

Note. Wilcoxon signed-rank test.

Figure 1.

Descriptive Plots Comparing Sample Means and 95% Confidence Intervals for the Adolescent versus Parent report of Anhedonia and Depressed Mood Measures

Figure 2.

Spearman’s rho heatmap of correlation analysis results between variables and variables and covariates

Conclusions

Anhedonia & Depressed Mood by Age, Sex, and Race/Ethnicity

The reporter gap for the positive presence of anhedonia was higher for males (53.9%) and for the positive presence of depressed mood was higher in females (65.2%). The “other” race/ethnicity group had the highest reporter gap for anhedonia (64.9%) followed by Hispanics (61.5%). Black and white parent and adolescent dyads had similar percentages of discrepancy for anhedonia (53.8% and 54.4% respectively). The number of black youth who reported experiencing depressed mood was so small (n=3) that follow up on future releases will be needed to assess this relationship. Of interest, Black adolescents reported the lowest level of depressed mood for all races/ethnicities. Asian dyads had the least reporter discrepancy for anhedonia at 33%. For adolescents, 11–12 years, the anhedonia gap was the highest (85.7%), however the cohort for that group only contained seven participants so follow up on this age group will be important to see if the percentage rate remains high. The reporter discrepancy rate for 9–10 year and 10–11-year adolescents was similar (53.6% and 50.1% respectively). Reporter discrepancies for depressed mood was also highest in the small cohort of 11–12-year adolescents (100%), also notably higher in 9–10-year adolescents (74.6%) compared to (59.3%) in 10–11-year adolescents.

The Spearman’s rho heatmap correlation matrix revealed the highest positive correlations were between the same type of reporter (adolescent or parent) and their report on both symptoms (anhedonia and depressed mood). Correlations were (0.19 and 0.26 respectively) indicating that it was more likely for a parent to report both symptoms than the adolescent. There were also significant (p<.001) for the relationship between the covariates race_ethnicity and household income (−0.299) and highest education (−0.321).

Anhedonia & Depressed Mood by Income and Education

Stratification by income revealed the highest reporter discrepancy for anhedonia by dyads with a household income of 50–100K (77.6%), followed by households with an income >100K (65.6%). Households earning <50K had the lowest level of discrepancy (52.4%). The same pattern of discrepancy was true for dyads reporting on the presence of depressed mood with 50–100K households, then >100K households, and finally <50K households.

The reporter discrepancies for education levels for anhedonia was varied and fell between 38.1–64.1%) with reporter discrepancies being the highest for households where the parent reporter had a bachelor’s degree (64.1%) followed by parent reporters with a post-graduate degree (59.7%). The reporter discrepancies for all education levels were similar for depressed mood and fell between 60–70.9% with reporter discrepancies being the highest for households where the parent reporter had a post-graduate degree.

The strongest negative correlation (0.63) was between the covariates of a household’s income and highest level of achieved education. The covariates of income and education were significantly (p<.001) and negatively associated with all of the symptom reports regardless of the reporter but was most strongly negatively associated with the adolescents’ report of the positive presence of anhedonia (highest education rho= −0.113; household income rho = −0.105).

Summary of findings

There are significant discrepancies in the parent versus adolescent reporting of anhedonia and depressed mood. Anhedonia is more difficult than depressed mood for parents to discern. Parents are having a harder time recognizing the symptoms in their males compared to female adolescents. The results yield interesting findings which illustrate our need to understand why income and education do not necessarily provide resources that support parent-adolescent convergence on symptom reporting and what attributes of lower household income families could be recognized and supported as well as emulated.

Limitations

Though our study quantifies the discrepancies we cannot speak to the etiology of the discrepancies which are likely varied and multifactorial. Influences from family functioning, parent mental health, parent-adolescent access to time for engagement and communication, communication skills, internalizing behavior by adolescents, and others may be contributing to these noted gaps in addition to the studied covariates.

Empirical findings on the trajectory of parent-adolescent reporting discrepancies are limited and at times report conflicting findings. Obtaining the report from multiple reporters can be useful when comparing outcomes. Evidence from previous studies have also found that adolescents report greater prevalence of behavioral and emotional issues than their parent(s) or caregivers (Edelbrock et al. 1986; Achenbach et al. 1987; Verhulst & Koot, 1992; Verhulst & Van der Ende, 1992; Seiffge-Krenke & Kollmar, 1998; Tamin, McCusker, and Dendukuri 2002). Further, poor parent-adolescent communication has been shown to have a strong effect size with depression in adolescents (Tang et al, 2020) and moderate effect size with more disengaged parenting (National Research Council (US) et al, 2009).

Discussion

Parents need support to identify these important symptoms in their adolescents and parents and adolescents need tools to support communication around these topics. These findings support changes to clinical practice. For example, parents and adolescents could complete individual surveys, such as the PHQ-9, during adolescent healthcare visits. Providers could speak to noted discrepancies without naming them and provide interventions and access to individual and family counseling when findings merited.

Future efforts and research

Efforts to support parents’ knowledge of symptom attributes and communication with their adolescents is imperative. Providing education to adolescents to support self-advocacy is also necessary. Continuing to study these patterns as this same group of adolescents grow will be useful in potentially discerning longitudinal patterns. Further consideration of parent and adolescent discrepancies of these symptoms in non-binary adolescents is also needed.

Data used in the preparation of this article were obtained from the Adolescent Brain Cognitive Development^SM (ABCD) Study (https://abcdstudy.org), held in the NIMH Data Archive (NDA). This is a multisite, longitudinal study designed to recruit more than 10,000 children age 9–10 and follow them over 10 years into early adulthood. The ABCD Study® is supported by the National Institutes of Health and additional federal partners under award numbers U01DA041048, U01DA050989, U01DA051016, U01DA041022, U01DA051018, U01DA051037, U01DA050987, U01DA041174, U01DA041106, U01DA041117, U01DA041028, U01DA041134, U01DA050988, U01DA051039, U01DA041156, U01DA041025, U01DA041120, U01DA051038, U01DA041148, U01DA041093, U01DA041089, U24DA041123, U24DA041147. A full list of supporters is available at https://abcdstudy.org/federal-partners.html. A listing of participating sites and a complete listing of the study investigators can be found at https://abcdstudy.org/consortium_members/. ABCD consortium investigators designed and implemented the study or provided data but did not necessarily participate in the analysis or writing of this report. This manuscript reflects the views of the authors and may not reflect the opinions or views of the NIH or ABCD consortium investigators.

The ABCD data repository grows and changes over time.

I acknowledge the contribution of the NIH, which funded one year of my doctoral studies (5T32NR007091, 2015–2020) and to the Neelon Biobehavioral Laboratory, Glaxo Fellowship in Nursing Fund Scholarships, and Daphine Doster Mastroianni Distinguished Professorship Fund for helping fund my dissertation and postdoctoral work.