Goals for Persistent Postconcussive Symptom Treatment From Adolescent and Parent Perspectives

Assessment and treatment for pediatric symptoms from sports-associated concussions is a growing concern in the US.^1,2 Although symptoms of concussion typically resolve within weeks, for some youth, sequelae can persist for months.³ Persistent postconcussive symptoms (PPCS) elicit a variety of concerns from the adolescents experiencing the symptoms and their families, including physical, cognitive, emotional, social, school, and quality-of-life issues.^1,4 For those with prolonged recovery, an individualized treatment approach based on their history and nature of the symptoms has been recommended, consistent with a patient-centered framework.⁴ However, little is known about adolescent and family goals to remediate PPCS. We conducted a content analysis of adolescent and caregiver goals for treatment using data collected during a collaborative care intervention, to categorize, describe, and quantify goal areas.

This secondary analysis included 100 participants aged 11 to 18 years with symptoms after concussion lasting more than 4 weeks, drawn from a larger randomized clinical trial of a collaborative care intervention addressing PPCS.⁵ The study was approved by the Seattle Children’s Hospital institutional review board, and written consent was obtained prior to study participation, as were parental consent and youth assent for adolescents younger than 18 years. Each participant listed 1 to 4 goals that were agreed on by the adolescent and their caregivers in response to the open-ended question, “What are your treatment goals in your concussion recovery?” This yielded a total of 280 goals, each of which was coded by 2 individuals (K.M.P. and E.T.P.) using conventional content analysis. A κ statistic indicated strong inter-rater reliability (0.93), with discrepancies between coders resolved through discussion. The data were collected from March 2017 to May 2019 and analyzed from July 2019 to September 2019, with SPSS version 22.0 (IBM) used to generate descriptive statistics.

The demographic characteristics of the sample are shown in Table 1. Of 100 youth participants, 59 were female; 38 were 11 to 14 years old, and 62 were 15 to 18 years old.

Four broad goal areas emerged from the data: physical health, education, physical activity, and mental health. The 2 coders defined each goal theme, as described in Table 2. To examine the distribution of goal areas, we calculated the proportion of participants with at least 1 goal in each category. As shown in Table 2, 61 (61%) had a physical health goal, 60 (60%) had an educational goal, 53 (53%) had a physical activity goal, and 50 (50%) had a mental health goal.

To formulate effective treatment plans that incorporate input from adolescent patients with PPCS and their caregivers, clinicians should consider soliciting self-reported recovery goals to engage patients in their care. We found 4 broad goal areas, with roughly half of all patients describing goals in each category. This sample is drawn largely from households of white individuals in higher socioeconomic strata, which limits generalizability.

First, in the area of physical health, adolescents desired symptom relief from the somatic complaints that accompany concussion (headaches, sleep difficulties, light, and sound sensitivity). To mitigate somatic symptoms, clinicians can use a multifaceted treatment approach, including questioning for premorbid symptoms, limiting exposure to stimuli that increase symptoms, short-course pharmacotherapy, and referrals to other types of therapies.⁴

Second, adolescents set academic goals including catching up on schoolwork, improving grades, and attending classes regularly. A recent systematic review suggests that 35% to 73% of children and adolescents require academic accommodations and/or experience difficulty in school after sports-associated concussion.³ Clinicians can educate patients, families, and school staff about return-to-learn guidelines and assessments for risk factors that may indicate the need for ongoing adolescent academic support.³

Third, adolescents also desired to return to their sports and physical activity regimens. For adolescents with PPCS, considerable restrictions in lifestyle and exercise can contribute to ongoing symptoms. Clinicians can support adolescents in a closely monitored, active rehabilitation program.⁶

Fourth, adolescents wanted help with mood regulation and mental health issues that frequently arise with concussion. A range of treatment options may be helpful, such as pediatricians or other clinicians providing informal support for mental health needs and connecting adolescents to local mental health resources that offer more structured therapies and psychopharmacological support.²

Corresponding Author: Carolyn A. McCarty, PhD, Seattle Children's Research Institute Center for Child Health, Behavior, and Development, PO Box 5371, M/S: CW8-5, Seattle, WA 98115 (carolyn.mcCarty@seattlechildrens.org).

Published Online: May 11, 2020. doi:10.1001/jamapediatrics.2020.0898

Author Contributions: Ms Payne had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.

Concept and design: Payne, Prentice, McCarty.

Acquisition, analysis, or interpretation of data: All authors.

Drafting of the manuscript: Payne, Prentice, Marcynyszyn.

Critical revision of the manuscript for important intellectual content: Prentice, McCarty.

Statistical analysis: Marcynyszyn.

Obtained funding: McCarty.

Supervision: McCarty.

Conflict of Interest Disclosures: None reported.

Funding/Support: This work was funded by a grant from Eunice Kennedy Shriver National Institute of Child Health and Human Development (grant RO1 HD090230).

Role of the Funder/Sponsor: The funder had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.