Navigating the challenges of moving from research to clinical care: The example of the Teen Online Problem Solving program

Abstract

Purpose/Objective: The pathway from clinical trials to implementation is lengthy and often unsuccessful. Thus, identifying strategies that promote clinical implementation is necessary. The Framework for Reporting Adaptations and Modifications-Enhanced was employed to characterize adaptations to the Teen Online Problem Solving program (TOPS). The aim was to broaden program reach and adoption by aligning TOPS with the needs of the implementation context, extending delivery to a broader range of pediatric neurological conditions. Method: Providers completed surveys about commonly experienced neurocognitive challenges across diagnoses. Therapists delivering the program to non-traumatic brain injury (TBI) diagnoses were surveyed about their experiences. Reach to non-TBI diagnoses and adoption by therapists treating other diagnoses provided metrics of implementation impact. Results: Medical providers rated cognitive/communication issues as most common and identified physical limitations, concentration/attention problems, learning/school difficulties, planning/organization, and processing speed as top concerns. Twenty-five psychologists/trainees ranked the child's current neurocognitive challenges, mood and behavior concerns, and developmental level as the most important considerations for tailoring, with diagnosis ranked seventh. Of 828 patients enrolled, 354 had non-TBI diagnoses, and 245 had TBI. Four case studies illustrate adaptations. Conclusions/Implications: Findings suggest that transdiagnostic adaptation of evidence-based pediatric psychology programs may be acceptable to clinicians and facilitate broader implementation.

Keywords

implementation science brain injury brain disorders adolescents

The pathway from successful clinical trial to implementation into care is lengthy and often unsuccessful.¹ Given established evidence for a growing number of programs promoting long-term psychosocial adaptation in children with varying medical conditions,^2,3 it is necessary to identify strategies to promote clinical implementation. Moving from diagnosis-specific to transdiagnostic approaches may mitigate barriers to implementation and support broader access to evidence-based practices. This transdiagnostic approach may be especially important in pediatric neurorehabilitation, where diagnosis-specific treatment protocols are limited to more common conditions (e.g., traumatic brain injury [TBI]) and awareness and expertise with less common conditions are lacking outside of large tertiary care treatment facilities.

Across neurological conditions, executive function (EF) challenges and associated difficulties with emotion regulation and cognitive-communication skills contribute to problems with everyday functioning. EF is an important transdiagnostic psychological process that drives behavior and functioning in both clinical and nonclinical samples.^4–6 It plays a central role in the development and maintenance of psychosocial symptoms across a range of neurological conditions.^7,8 EF challenges link to poorer academic performance, adjustment (e.g., internalizing and externalizing problems), and/or health-related quality of life in adolescents with TBI, epilepsy,^9,10 and brain tumors.^11,12 Although transdiagnostic protocols targeting affective symptoms, such as depression and anxiety, have been developed and evaluated, no transdiagnostic treatment protocols currently exist for children with neurological conditions that disrupt EF and associated skills. Targeting EF could mitigate adverse psychosocial outcomes for these children.

The Teen Online Problem Solving (TOPS) program was designed to equip adolescents and their families with skills to address common challenges associated with TBI in a problem-solving framework. Understanding and addressing EF challenges form the foundation of TOPS. Ten core sessions provide training in cognitive reframing, problem-solving, organization and planning, emotion regulation/anger management, and communication skills, with supplemental sessions addressing initiation and working memory. TOPS and related programs, such as Online Family Problem Solving and Counselor Assisted Problem Solving, have been shown to be effective in improving behavior and EF difficulties across five randomized controlled trials and an individual participant data meta-analysis.^13–18 In joint profile analyses examining data from 359 participants with moderate to severe TBI across five randomized controlled trials, participants in the family problem-solving group had more favorable child (internalizing and externalizing behavior problems, executive function behaviors, social competence) and family outcomes (parental depression, psychological distress, family functioning, parent-child conflict) than participants in the control condition, with moderate effect sizes.¹⁹ Thus, recent evidence-based guidelines for acquired brain injuries (ABI) identified TOPS as a practice standard for treating behavioral and EF difficulties following TBI.²

TOPS is currently being clinically implemented at 15 sites in the United States and Canada. Clinical implementation began in spring 2020, contemporaneously with the onset of the COVID pandemic. Consequently, the incidence of moderate to severe TBI was sharply lower than prior years due to the impact of quarantine lockdowns on children's activities and behavior. Moreover, the need for online treatments, which previously had not been part of standard care, increased dramatically, given that in-person treatments were precluded. Given these changes in patient populations and treatment delivery modalities, referring and treating psychologists proposed expanding reach by extending implementation to adolescents with other neurological conditions with significant EF consequences, such as pediatric brain tumors^20,21 and epilepsy.^10,17,22 These disorders can be conceptualized within three broad classes: 1) ABI caused by force, including TBI, 2) ABI caused by non-traumatic causes, such as tumors and infections, and 3) neurocognitive impairments arising from congenital disorders, chromosomal disorders, or other conditions present from birth. The Framework for Reporting Adaptations and Modifications-Enhanced (FRAME) was used to characterize considerations driving adaptations.²³ Figure 1 depicts the elements of the FRAME process that informed adaptations in the current project.

Figure 1.

The framework for reporting adaptations and modifications-expanded. Note. Adapted from Wiltsey Stirman et al. (2019) to depict the adaptations made to the TOPS intervention.

Using FRAME, the objectives were to describe the process of adapting the TOPS program for other ABI and neurological conditions, to present quantitative and qualitative feedback from therapists who have delivered the program to one or more adolescents/young adults with non-TBI diagnoses, and to provide case examples of tailoring for different diagnoses and clinical presentations. It was expected that the program could successfully be adapted for transdiagnostic use, that therapists would find the modified TOPS program to be feasible and effective for patients with a wide range of neurological conditions and diagnoses involving executive dysfunction, and that these adaptations would extend reach and adoption.²⁴

Method

The TOPS program, defined as a practice standard and described in greater detail below, is currently being implemented as part of clinical care. The questionnaires administered to medical providers and active therapists were reviewed by the institutional review board and determined to be exempt (IRB #2020-0033). Data and materials for this study are available by emailing the corresponding author.

The TOPS program includes 10 online learning modules comprising the program's core learning objectives. Additional, supplemental online learning modules, focusing on less universal issues such as pain or seizures, were available for patients and families with concerns in those areas. Problem-solving, introduced in the third session, provides a heuristic approach for challenges with EF (session 4), self-regulation (session 5), emotion/anger control (session 6), communication (session 7), social relationships (session 8), and self-care (session 9). Adolescents and their families have the option of completing additional supplemental sessions, focused on topics such as task initiation and working memory, prior to the closing session (session 10) which reviews progress and plans for future challenges.

TOPS’ implementation began in spring 2020 at 10 sites and expanded to 15 sites in fall 2020. Soon after implementation began, TOPS-trained therapists and referral sources questioned whether TOPS could be used with other diagnoses and conditions that had similar profiles of EF and cognitive-communication deficits due to the lack of existing online interventions and acute clinical needs at the start of the COVID pandemic.²⁵ To inform potential adaptation for other neurological conditions/diagnoses, providers who served as referral sources (e.g., physicians, psychologists) were asked to rate the appropriateness of the TOPS content and information across various diagnoses. This initial survey was conducted in January 2021, and the results were used to inform modifications to the website and therapist manual, including the development of new online learning modules. The second survey, specific to therapists delivering TOPS (excluding providers), was administered between June 2023 and May 2024, further contributing to the iterative adaptation process. In order to qualify as a TOPS therapist, each therapist needed at least master's-level training and completed a seven-hour TOPS training.²⁶ To broaden program reach and capacity, training was delivered to psychologists, neuropsychologists, speech-language pathologists, social workers, psychology trainees, and other clinicians who work closely with remediating EF challenges in children with ABI. Data were collected throughout regarding patient reach (TBI versus non-TBI) and therapist adoption.

Measures

Provider survey

Medical providers at implementation sites who treat adolescents and young adults (ages 13–22) with neurological conditions were sent a link to complete a survey about the neurocognitive and behavioral challenges commonly experienced by their patients. The Research Electronic Data Capture tool (REDCap) was used to administer this survey.²⁷ After answering demographic questions about their gender, education, professional role, and years of experience, providers identified which neurological conditions they treated, with options of childhood stroke/neurovascular disease, epilepsy, encephalitis, anoxic injuries, post-surgery or resection, or other fill-in diagnoses. For each diagnosis they reported treating, providers rated the impact of concerns in physical (seven items), cognitive/communication (seven items), behavioral/emotional (eight items), and social/family (six items) domains using a Likert scale with options of (1) not a problem, (2) slight problem, (3), moderate problem, (4) significant problem, or (5) very significant problem. Providers were instructed to consider the post-acute recovery phase while keeping in mind the longer-term or persistent concerns their patients may face.

Active therapist survey

Therapists delivering TOPS received a REDCap link²⁷ to a survey asking about their experiences delivering the intervention and how they adapted it for their patients. Survey construction was community-informed with active therapists suggesting survey items/content. Respondents provided their level of training, the patients’ diagnoses/conditions, comorbid diagnoses for which they considered or modified TOPS, and the total number of patients seen for four or more sessions. Respondents ranked a list of factors (e.g., diagnosis, age at diagnosis, family resources) in terms of their importance when tailoring the program for the patients and families they treated (“1” = most important, 10 = “least important”). Additional questions were asked about resources or barriers and specific mood and/or behavioral concerns that impacted treatment delivery, as well as which optional/supplemental sessions therapists recommended most often. Open-ended questions asked about ways in which therapists tailored TOPS for their patient populations and additional feedback about adaptation (questionnaire available on request). Finally, participating therapists were provided with a template to share case studies describing their use of TOPS with distinct neurological conditions.

Cases were selected to illustrate the range of diagnoses and conditions that the program was used with including nontraumatic insults, and congenital and chromosomal disorders. The identified cases also provided clear descriptions of how the TOPS program was adapted to support implementation across diagnoses.

Quantitative analyses

Medical provider demographics are summarized and presented in Table 1. Symptom ratings and diagnosis-specific domain ratings were summarized with descriptive statistics (means [M], standard deviations [SD]). Quantitative data from the TOPS therapist survey were summarized with descriptive statistics, frequencies, and percentages for all Likert scale response items.

Table 1.

Medical provider demographics.

Total n	43
Number of females (%)	30 (70%)
Education Level
Professional School Degree (e.g., MD, DDS, DVM, JD)	24 (56%)
Doctoral Degree (e.g., PhD, EdD)	18 (42%)
Master's Degree (e.g., MA, MS, MEng, MEd, MBA)	1 (2%)
Provider Role
Neurology	17 (40%)
Psychology/Neuropsychology	16 (37%)
Rehabilitation medicine/physiatry	7 (16%)
Oncology, Other Mental Health Professional, or Other Unspecified Role	3 (7%)
Years in the Field
> 10	19 (44%)
6 to 10	12 (28%)
1 to 5	9 (21%)
Trainee/<1	3 (7%)
Conditions Treated
Childhood stroke/neurovascular disease	27 (63%)
Epilepsy	29 (67%)
Encephalitis	25 (58%)
Anoxic injuries	23 (53%)
Post-surgery or resection	16 (37%)
Other diagnoses (e.g., meningitis, diabetic/metabolic encephalopathy, cerebral palsy, prematurity, concussion/mild traumatic brain injury, brain tumor, chronic pain syndromes, neurofibromatosis, congenital heart disease)	10 (23%)

Qualitative analyses

Open-ended survey responses were entered into Dedoose, a qualitative coding software (Dedoose Version 9.0.17, 2021). Three authors (SG, KB, and LG) followed thematic analysis phases as Braun and Clarke described.²⁸ The authors independently reviewed survey responses to identify preliminary common themes for each question.²⁹ Coders subsequently met to discuss and agree on final themes using an iterative coding process.³⁰ The coding scheme was considered completed once no additional changes were made to thematic categories, after which a codebook was finalized with themes named and defined. Interrater reliability ranged from 0.83 to 1.00 across themes within each survey question. For all survey questions, themes were classified as major if they were endorsed by at least 50% of respondents. Minor themes were endorsed by at least 20% of respondents. Percentages were calculated based on the number of respondents for each question.

Results

FRAME processes supporting initial adaptation

As depicted in Figure 1, adaptations were reactive to the unprecedented conditions created by the widespread COVID lockdowns: namely, a substantial reduction in the incidence of TBI³¹ and the need for evidence-based telehealth treatments for other diagnoses. Site leaders and therapists delivering the intervention drove the decision to adapt the program to extend reach and engagement.

Reach and adoption outcomes

Enrollment in the implementation trial began in June 2020 with inclusion of non-TBI conditions beginning in August 2020, although content and training adaptations continued through early 2021. As of December 2024, 843 adolescents and young adults had been enrolled: 361 with non-TBI diagnoses, 252 with TBI, and 230 with unknown conditions/diagnoses. Four hundred eighty-three individuals have been trained to deliver the program, including 36 providers in epilepsy and neuro-oncology clinics.

Medical provider surveys

Table 1 summarizes demographics for the 43 medical providers who completed the provider survey. Seventy percent of respondents were female. Professions included neurology (40%), psychology/neuropsychology (37%), and physiatry (16%).

Diagnosis-specific mean domain ratings can be seen in Figures 2 and 3. Providers rated cognitive/communication issues highly across conditions. When asked about the top three concerns for each diagnosis, providers identified physical problems or limitations, concentration/attention problems, and learning/school difficulties for children who had a stroke, epilepsy, or medication/treatment side effects. For children with epilepsy, providers listed concentration/attention problems and learning/school difficulties with equal frequency. Planning/organization, processing speed, and learning/school difficulties were the primary concerns for children with encephalitis, anoxic injury, and/or post-surgical resection. Qualitatively, providers also noted mood dysregulation/lability, social isolation/difficulties, and transition to adulthood/independence as prominent concerns across conditions.

Figure 2.

Bar chart showing mean domain ratings across diagnoses by medical providers. Note. Many symptom domains were endorsed, with variation across diagnoses. Abbreviations: Cog./Comm.=Cognitive/Communication Symptoms, Behav./Emotional = Behavioral/Emotional Symptoms, Post-Surg.=Post-Surgical.

Figure 3.

Bar chart showing mean domain ratings by diagnoses by medical providers. Note. Cognitive/communication symptoms and behavioral/emotional symptoms were rated highest on average for survivors of anoxic injuries. Abbreviations: Cog./Comm.=Cognitive/Communication Symptoms, Behav./Emotional = Behavioral/Emotional Symptoms, Post-Surg.=Post-Surgical.

Content and context modifications

Given interest in using TOPS across a range of conditions, the program website and therapist manual were amended to refer to “brain conditions” rather than TBI. This term was chosen based on feedback from active therapists to provide a broad, nonclinical descriptor encompassing a range of diagnoses that affect brain functioning and EF, including both acquired and congenital conditions. New videos with adolescents and young adults with a history of brain tumors, epilepsy, and stroke were developed. Based on feedback collected from active therapists and medical provider surveys, new supplemental sessions were developed, including online modules for medication management (epilepsy), coping with “visible and invisible” disability (stroke, brain tumor survivors, cerebral palsy), and decision making. Given differing profiles of concerns, training was modified to support tailoring of session order and content emphasis.

TOPS therapist survey

Twelve of the 43 TOPS-trained therapists responding to the survey were ineligible due to lack of experience delivering TOPS to non-TBI populations. Six trainee respondents did not receive the full survey due to a programming error, although they did answer questions about diagnoses treated. Additionally, respondents could select multiple options for some items. Thus, Ns and resulting percentages vary across items.

Thirteen of the 31 participants were practicing clinicians (nine licensed psychologists, three licensed speech-language pathologists, and one licensed social worker), and 18 were trainees (eight fellows, six interns, and four practicum students). Of the 18 trainees, 13 specialized in neuropsychology, and five had expertise in other areas (e.g., health psychology).

Quantitative results

Therapists (n = 31) reported delivering TOPS to patients with brain tumors (48%), epilepsy (48%), and stroke (35%). Other treated diagnoses include encephalitis/infectious insult, non-central nervous system (CNS) cancer late effects, multiple sclerosis, spina bifida/myelomeningocele, sickle cell disease, and congenital brain malformations (see Table 1). When asked about comorbid diagnoses for which therapists considered or modified TOPS (n = 25), 17 respondents indicated attention-deficit/hyperactivity disorder (ADHD; 68%), 15 indicated anxiety (60%), 10 indicated depression (40%), and four indicated one or more learning disorders (16%). The total number of patients seen for four or more sessions ranged from 1–30.

The importance of various factors in tailoring the program varied widely across therapists. On average, current concerns/profile of neurocognitive challenges ranked as most important (as indicated by lowest average rating; M = 4.36; SD = 3.43). “Other factors” was ranked as least important (M = 7.12; SD = 3.22), followed by age at diagnosis (M = 6.71; SD = 2.41). Diagnosis was ranked 7th overall (M = 5.72; SD = 2.24). Technology access was identified as the most impactful resource or barrier to treatment (64% of respondents), followed by health insurance (24%), transportation (16%), and “other” (one respondent wrote in “scheduling” and 2 respondents wrote in “none” and “n/a”; n = 25).

The most commonly recommended supplemental sessions were: Memory Strategies (56%), Self-Advocacy (52%), Sleep (48%), Managing Fears and Worries (44%), and Initiation (40%) (see Supplemental Table 1 for all supplemental sessions recommended; n = 25). Other diagnoses for which therapists recommended expanding TOPS included primary and/or severe ADHD, functional neurological symptoms, post-concussion symptoms, chronic pain, cancer, long COVID, depression, anxiety, any condition in which self-management is crucial (e.g., type 1 diabetes, cystic fibrosis), and genetic conditions that impact EF (e.g., neurofibromatosis type 1).

Qualitative results

Major and minor themes appeared in response to the seven open-ended questions asked in the TOPS therapist survey. Six questions are discussed below; one optional question which was removed due to low response (n = 3) asked “Please provide additional feedback”. Major themes are bolded, whereas minor themes are italicized.

Describe your rankings and how you tailored the program taking these factors into account

Twenty-three respondents provided additional information about their quantitative rankings of the importance of 10 factors when tailoring the TOPS program for patients and families. Sixteen respondents (69.6%) explained how they tailored TOPS based on the presenting problems of their patients. This includes rephrasing or removing information if the patient had a non-TBI diagnosis, using problem-solving goals to target an aspect of the diagnosis, being aware of a patient's relative challenges, and providing more psychoeducation related to concerns. A few providers specifically noted using “tiny bits” or “pausing” TOPS when patients were in a psychological crisis. Fifteen respondents (65.2%) also described tailoring TOPS to account for cognitive and developmental differences, such as age, language skills, executive dysfunction, attention and comprehension abilities, and intellectual disabilities. Additionally, six providers (26.1%) commented on the role of family engagement and motivation in their decision to tailor TOPS. One provider noted, “The most successful sessions included quality patient and family engagement, which prompted really focusing on rapport building and engagement in the first session and beginning of each session.” Lastly, eight providers (34.8%) explained how they considered patient and family needs. In this case, modifications centered around making TOPS more accessible for the family through highlighting their concerns, addressing technology barriers, and accommodating life stressors.

How have you tailored the content for non-TBI diagnoses?

Nineteen respondents detailed how they tailored TOPS content for non-TBI diagnoses. Seven respondents (36.8%) considered individual needs by modifying language, taking a more symptom-focused approach, and highlighting relevant parts of videos. Six respondents (31.6%) explained how they generalized the content. One provider commented, “I usually just start with a conversation about how when the program was first developed it was designed for TBI patients, but we found those difficulties faced by TBI patients and other cognitive diagnoses were very similar and the program was also helpful for these populations.” While some providers generalized information, five (26.3%) mentioned providing diagnosis-specific information, especially regarding psychoeducation about the presenting concerns. Similarly, four (21.1%) noted incorporating supplemental sessions to address presenting concerns.

How does the level of psychoeducation you provide vary based on diagnosis?

Seventeen respondents described how they varied the level of psychoeducation based on diagnosis. Eleven respondents (64.7%) reported providing more diagnosis-specific information when the patient had a non-TBI diagnosis. For example, they noted other diagnoses, such as stroke, brain tumor, epilepsy, and ADHD. Eight (47.1%) also highlighted individual needs that influenced the level of psychoeducation, including age, family and client awareness and understanding of sequelae, functioning level, family receptivity, and treatment progress.

How do you vary the order of session delivery/content based on patient diagnosis?

Twenty respondents described how they varied the order of session and content delivery of TOPS. Six of the 20 (30%) shared that they did not vary the order of the content. Two of those six specifically noted that they ensured the first four sessions were standardized. Seventeen (85%) detailed how they tailored the session or content delivery based on patient needs or presenting concerns. One provider mentioned doing this personalization to create “buy in”. Five (25%) specifically called attention to the use of supplemental sessions to address primary concerns. Many providers also highlighted the incorporation of multiple techniques, such as problem-solving skills and psychoeducation. One provider explained this balance by commenting, “…I will relate the underlying message to the patient's diagnosis/symptoms (‘This section doesn’t exactly apply to your situation, but one aspect that is similar is…’). Then any deviation is based on need.”

Please describe other adaptations you have made

Fifteen respondents noted other adaptations they made to the content and delivery of TOPS. Ten (66.7%) specifically described changes to the delivery of TOPS, including changing the order, modifying pace and time between sessions, using additional therapeutic techniques, reviewing modules in session, and adjusting the number of steps for the problem-solving strategies. Three providers (20%) also described additional material they utilized in the delivery of TOPS, such as more visual material, a therapy journal, and physical take-home handouts.

What changes would you make to the program to improve its value for non-TBI diagnoses?

Seventeen respondents described changes they would make to TOPS for non-TBI diagnoses. Twelve (85.7%) noted changes to the TOPS content to be more transdiagnostic through the incorporation of tailored psychoeducation, videos, and supplemental sessions. One provider suggested other populations TOPS could be used with, including ADHD, children born premature or with very low birth weight, sickle cell anemia, and congenital heart disease. Another provider suggested a change to TOPS content:

“if ‘brain disorder’ were not as infused throughout a module, it could be expanded readily to patients with more ‘functional’ concerns in a transdiagnostic fashion (e.g., post-concussive, chronic pain, etc.). Currently, some non-TBI groups would not be well served by the heavy focus on permanent neurological impairment.”

Eight respondents (47.1%) also highlighted changes centered around flexibility in the delivery to be around the number or type of psychoeducation sessions and presenting concerns for differing diagnoses. For example, one provider described “a program where you can select content relevant to the client” as more beneficial for non-TBI diagnoses than a “standardized, 10-session program.”

Case studies

Overview

The four case studies selected encompass a range of diagnoses, ages, and backgrounds/social determinants of health. They include chromosomal/inherited disorders (spinocerebellar ataxia), conditions present since birth (perinatal stroke), congenital conditions (congenital heart disease), and nontraumatic ABI (brain tumor). For each case, the therapist described program tailoring, patient and family aims and their success in achieving them, and the final disposition. The case studies have been fully de-identified and anonymized, including the use of pseudonyms.

Case study 1: Alejandro

Background & Diagnosis: Alejandro is a 16-year-old Hispanic male diagnosed with adolescent-onset spinocerebellar ataxia – type 7 (SCA7). This rare, progressive disorder affects motor and speech functions, as well as cognitive abilities, including EFs, processing speed, visual-spatial skills, and verbal fluency. Following typical early development, Alejandro began experiencing vision issues at age 10 and motor difficulties at age 13. At the beginning of treatment, he used a walker or crutches for mobility and had dysarthria, though he remained intelligible. Concerns included emotional regulation/irritability perseveration and worsening academic difficulties.

Tailoring the Program: The TOPS program was tailored to avoid discussions about recovery due to the progressive nature of SCA7. Sessions addressed concrete challenges, such as pouring cereal and managing frustration/anger and were completed out of order based on the family's concerns. Some sessions were repeated or extended to reinforce concepts.

Progress & Aims Addressed: Alejandro and his family attended nine virtual sessions. The primary ones included Problem Solving, Controlling Your Anger, Staying in Control, Getting Organized, and Verbal/Nonverbal Communication. Alejandro and his mother focused on managing his anger outbursts and perseveration. He learned to use deep breathing techniques to manage frustration and received psychoeducation on his 504 Plan and the cognitive effects of SCA7. Involvement of Alejandro's mother was imperative given that his insight waxed and waned based on his physical health. She continued to be a primary support.

Disposition/Summary: Alejandro faced increased medical difficulties, including the need for a wheelchair and concerns about swallowing. The family transitioned to longer-term outpatient therapy. The TOPS program provided lasting benefits for anger and mood management, as well as coping skills, supporting Alejandro and his family as they established care with specialized services.

Case study 2: Ellen

Background & Diagnosis: Ellen is a 20-year-old White female with a history of right-sided perinatal stroke, refractory epilepsy with multiple surgical treatments, and mild intellectual disability. Her most recent neuropsychological evaluation showed low overall intellectual abilities and below-average adaptive skills, with deficits in EF, memory, and processing speed, but relative strengths in attention skills and the ability to follow verbal instructions. Initial concerns included discomfort when home alone, social anxiety, and difficulty verbally expressing her emotions. Goals included improving family communication, increasing social interactions, improving self-advocacy skills, and exploring career options.

Tailoring the Program: Given cognitive limitations, the therapist emphasized multi-modal learning and clear communication. Sessions were structured to provide one-on-one time with Ellen and family-based intervention to promote communication. The session order and content were tailored to Ellen's needs, focusing on verbal and nonverbal communication, social behavior, and problem-solving for her job search and peer relationships. Given the importance of communication, this content was reviewed multiple times, and the skills were role-played during sessions.

Progress & Aims Addressed: Ellen developed plans for medication management, job search, and family communication. She completed 10 sessions, focusing on improving communication and self-advocacy. Ellen and her mother engaged with the website content outside of treatment sessions.

Disposition/Summary: Ellen completed two booster sessions to review progress and refresh skills. The family felt comfortable continuing without regular therapy. In addition, Ellen used the website to review topics at home.

Case study 3: Casey

Background & Diagnosis: Casey is a 15-year-old White female with a congenital heart defect (double aortic arch), secondary pulmonary insufficiency, gastrointestinal complications, and ADHD. Her most recent neuropsychological evaluation showed below-average intellectual functioning, ADHD, and a Specific Learning Disorder with Impairment in Math. She also had difficulties with attention, EF, visual reasoning, and memory, with relative strengths in processing speed and social skills. Primary concerns included attention, memory, and academic challenges coupled with anxiety, irritability, and verbal aggression toward her family.

Tailoring the Program: The program was tailored by providing additional education about the impact of Casey's cardiac history on her neurocognitive functioning. Sessions were designed to minimize distractions, with content reviewed and repeated as needed. Given multiple stressors in the home, content was reviewed and repeated often. Preferential scheduling was used to accommodate competing demands.

Progress & Aims Addressed: Casey and her primary caregiver completed all 10 core sessions, focusing on implementing medical recommendations and strategies from TOPS. The problem-solving tool was revisited frequently to address weekly challenges. Casey and her family reported significant benefits from the weekly topics and problem-solving approach (e.g., sleep hygiene, using a planner), including generalization of strategies to other family members.

Disposition/Summary: The family broadened their understanding of the impact of Casey's medical history on daily functioning, reducing guilt and frustration. The problem-solving approach decreased arguments between Casey and her mother, and the family became open to formal family therapy.

Case study 4: Anne

Background & Diagnosis: Anne is a 19-year-old White female diagnosed with a craniopharyngioma, a rare, non-cancerous brain tumor located near the pituitary gland. This condition led to vision loss and frequent headaches, contributing to anxiety when navigating new environments. Post-treatment adrenal insufficiency exacerbated anxiety regarding potential recurrence. Goals included improving Anne's emotion regulation and social communication skills and increasing confidence and independence.

Tailoring the Program: The program was tailored to increase accessibility for Anne, given her visual impairment. Weekly audio recordings of each module were provided, along with the use of a screen reader. Content was verbally reviewed each week, focusing on expressive language and verbal skills. Sessions emphasized auditory reminders and self-advocacy around her challenges (e.g., letting professors know she was listening even if she needed to close her eyes).

Progress & Aims Addressed: Anne and her mother attended 11 sessions. Anne practiced positive self-talk and stress management, set small independence goals, and improved her emotion regulation and sibling relationships. Skills like “Stop and Think” and positive self-talk were particularly helpful. Anne used deep breathing to manage physiological symptoms arising from anxiety and/or adrenal insufficiency.

Disposition/Summary: Anne became more independent (e.g., shopping, cooking meals) and more effective in managing her emotions through inhibition/stop and think, positive self-talk, and deep breathing. Her relationship with her siblings improved, and she developed self-advocacy skills. The family noted a ripple effect, improving dynamics within the larger family unit.

Discussion

FRAME, depicted in Figure 1, was used to examine the process of adapting TOPS, an evidence-based intervention for adolescents with TBI, for use with a range of neurological conditions that adversely impact EF and cognitive communication skills in an effort to improve reach and engagement. The pandemic created unique barriers to implementation (fewer TBIs) and opportunities for adaptation (the need for evidence-based telehealth programs). Feedback from medical providers underscored the common neurocognitive and behavioral challenges that cut across diagnoses, supporting the development and implementation of a transdiagnostic treatment protocol. This ‘scaling out’ of implementation of TOPS to new neurological populations is a promising approach to increase access to evidence-based psychosocial treatments,³² and overall, it was viewed favorably by current TOPS therapists. Specifically, feedback from therapists who delivered the program to individuals with non-TBI diagnoses highlighted 1) the adaptability of the program and 2) the importance of prioritizing current concerns and developmental level over the specific diagnosis (i.e., acquired or congenital condition). Both the therapist surveys and the case studies illustrated the nature of content modifications, including changing the order, emphasis, and time spent on specific content while preserving fidelity to the family-centered, problem-solving framework. Substantial increases in reach and adoption suggest that these adaptations were successful in supporting broader implementation and engagement, as intended. Taken together, the findings suggest that a family-centered problem-solving treatment such as TOPS that addresses foundational EF, emotion regulation, and cognitive-communication skills can successfully be adapted to treat a range of conditions with similar cognitive features, thereby promoting widespread implementation.

The process of adapting TOPS for other diagnoses and conditions with significant EF sequelae was driven by clinicians who were trained to use the program with TBI and envisioned its broader utility with adolescents with varying diagnoses but similar neurocognitive symptom profiles. In the current study, feedback from medical and behavioral health providers working with these broader populations suggested considerable commonalities across the diagnoses surveyed. On average, both emotional/behavioral and cognitive communication challenges were rated as moderate to significant problems. Providers also noted social/family issues as a moderate problem across diagnoses, underscoring the value of involving the family.

Surveys completed by therapists actively using the program indicated that they delivered it across a wide range of conditions, and that presenting concerns and current level of functioning were much more relevant to how they tailored treatment delivery for non-TBI than the specific condition, age at diagnosis, or whether it was congenital or acquired. Qualitative feedback identified ways that therapists tailored the program for different diagnoses and conditions, including providing diagnosis-specific psychoeducation, emphasizing content that was relevant to the adolescent's current concerns, modifying session order, and incorporating supplemental sessions (e.g., adherence, seizures). Although some therapists noted that the content could be dense, others used flexibility in pacing (spending more time on some content) to address differing teen and family learning styles.

The four case studies highlight the nature of content modifications as well as the range of diagnoses and conditions for which the TOPS program has been adapted. These are noteworthy for their complexity and the range of physical and cognitive comorbidities. Of note, three of the case studies illustrate how the TOPS program can be tailored for teens/emerging adults with significant intellectual impairment or declining cognitive abilities. Spending multiple weeks on key content and addressing fewer aims supported progress. Even with progressive conditions such as cerebellar ataxia, TOPS could be adapted to problem-solve around concrete skills and improve emotion regulation. Further, the case studies highlight how the TOPS program may be a helpful tool across diagnostic groups to reduce parent-teen conflict and facilitate appropriate growth in independence skills, challenges that commonly arise in medical populations during emerging adulthood. Moreover, improvements in individual and dyadic functioning extended to the family, underscoring the value of involving both caregivers and adolescents/emerging adults in the treatment.

Increases in reach to non-TBI diagnoses and broader adoption by therapists outside of TBI follow-up clinics point to the effectiveness of these adaptations. The current report is limited by its lack of patient-reported outcome measures or other external evaluations of therapeutic progress, beyond the therapist's self-report. Active therapist response rate was less than 50%; thus, feedback may not be representative of the broader perspectives of those delivering the program. Because therapist surveys were anonymized, it was not possible to determine if there were individual, professional, institutional, or regional factors that influenced their experiences. The survey approach was chosen as opposed to a focus group due to ease and accessibility of completing a survey, as well as difficulty scheduling a time to convene large groups of people across multiple time zones, also limiting perspectives of program delivery. Additionally, original analysis of medical provider survey data did not meet the assumption of independent observations (e.g., the same provider was present in multiple diagnosis groups), a limitation that was unable to be corrected; therefore, statistical comparisons across diagnoses were not reported.

Future research addressing these limitations, including full-scale effectiveness-implementation hybrid trials,³³ can ensure that TOPS has similar benefits to those shown in earlier TBI-focused trials for individuals with diverse neurological conditions. Future studies should also include a measure of patient-reported functional outcome following intervention.

Despite these limitations, the current report provides important information about the process of transdiagnostic adaptation of an existing evidence-based program designed to address EF, emotion regulation, and cognitive communication difficulties following TBI. These findings suggest that a treatment program like TOPS that addresses transdiagnostic processes across a range of neurological conditions can be adapted using FRAME and may be acceptable to clinicians and families and effective in supporting patient goals. Because numerous neurological conditions are too rare to warrant their own disorder-specific behavioral or psychosocial treatments, broader transdiagnostic approaches that address cross-cutting challenges are critical for providing neurorehabilitation-informed care and maximizing public health benefit.

Supplemental Material

sj-docx-1-prm-10.1177_18758894261434357 - Supplemental material for Navigating the challenges of moving from research to clinical care: The example of the Teen Online Problem Solving program

Supplemental material, sj-docx-1-prm-10.1177_18758894261434357 for Navigating the challenges of moving from research to clinical care: The example of the Teen Online Problem Solving program by Sandra Glazer, KellyAnn Bonanno, Lisa Gies, Lindsay Cirincione, Emily L Moscato, Adrien M Winning, Sophie Leib, Cynthia Austin, Marie Van Tubbergen, Abigail Johnson, Dina Hankin, Kelly McNally and Shari L Wade in Journal of Pediatric Rehabilitation Medicine

Footnotes

Acknowledgments

The authors have no acknowledgments.

ORCID iDs

Sandra Glazer

KellyAnn Bonanno

Lisa Gies

Lindsay Cirincione

Emily L Moscato

Adrien M Winning

Sophie Leib

Cynthia Austin

Marie Van Tubbergen

Abigail Johnson

Dina Hankin

Kelly McNally

Shari L Wade

Ethical considerations

The questionnaires administered to medical providers and active therapists were reviewed by the institutional review board and determined to be exempt (IRB #2020-0033). Data and materials for this study are available by emailing the corresponding author.

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Supplemental material

Supplemental material for this article is available online.

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