Pediatric Adherence SIG Newsletter

Winter 2020

Welcome to the Society of Pediatric Psychology (Div 54) Adherence Special Interest Group's Winter Newsletter!

Newsletter Overview:

  1. Adherence & Self-Management Postdoctoral Fellowship Programs Resource
  2. SIG Member's Recent Accomplishments
  3. RESEARCH, CLINICAL, TRAINEE: Telemedicine and Pediatric Pain: We are Not in Kansas Anymore - By Drs. Katherine Salamon, Catherine Stewart, Emily Wakefield, & Sara Williams
  4. CLINICAL, TRAINEE: Promoting Adherence and Self-Management amongst Youth Living with Chronic Pain during the COVID-19 Pandemic: The Perspective from a Psychology Trainee - By Dr. Melissa Young
  5. CLINICAL: Clinical Impact of COVID-19 on Self-Management & Adherence in an IBD Clinic - By Drs. Jennie David & Hannah McKillop
  6. RESEARCH, CLINICAL: Highlights from the SIG’s recent manuscript on the impact of COVID-19 on pediatric adherence and self-management

*Bolded words identify the perspective and/or topic a piece includes

Adherence & Self-Management Fellowship Programs Resource


Are you looking for a postdoctoral fellowship program with clinical and/or research opportunities in pediatric adherence and self-management? We are currently developing this resource, so stay tuned! The list highlights specific adherence and self-management training opportunities in programs across the country. We will distribute this resource this month via email to Division 54 listserv as well as post it to our Adherence SIG website.

The list will be updated and distributed annually. Next year we will extend it to include internship sites offering adherence and self-management training opportunities.

SIG Member's Recent Accomplishments

Congratulations to everyone on all your hard work and successes!


Kevin Hommel, PI - NIH/NINR: R01NR019426

Randomized Controlled Trial of Migraine Manager: A Digital Therapeutic Self-Management Tool for Adolescents with Migraine

Kristine Durkin, PICystic Fibrosis Foundation Traineeship NIH/NHLBI National Research Service Award (Parent F31; 1F31HL147491-01A1)

Mixed Methods Approach to Evaluating Barriers to Nutritional Adherence in Adolescents with Cystic Fibrosis


Carmody, J. K., Simon, S. L., Mara, C.A., Byars, K. C.(2020). Validation and confirmatory factor analysis of the pediatric adherence barriers to continuous positive airway pressure questionnaire. Sleep Medicine, 74,1-8. doi:10.1016/j.sleep.2020.05.025

Gamwell, K. L., Gibler, R. C. Kollin, S. R., Bedree, H., Bieniak, K. H., Jagpal, A., Tran, S. T., Hommel, K. A., & Ramsey, R. R. (in press). Systematic evaluation of pain management apps examining behavior change techniques. PAIN, doi:10.1097/j.pain.0000000000002090

Gray, W. N., Wagoner, S. T., Schaefer, M. R., Reed, B., Morgan, P., Holbrook, E., Yacyshyn, B., Mackner, L., Young, M., Maddux, M., Saeed, S. A., Denson, L. A., & Hommel, K. (in press).

Transition to adult IBD care: A pilot multi-site, telehealth hybrid intervention. Journal of Pediatric Psychology.

Harry, O., Crosby, L.E, Mara, C., Ting, T.V., Huggins, J.L., & Modi, A.C. (2020). Feasibility and Acceptability of an innovative adherence intervention for young adults with childhood-onset systemic lupus erythematosus. Pediatric Rheumatology, 18(1):36, 1-8. doi:10.1186/s12969-020-00430-z.

Hoch DeKeyser, H., Ramsey, R.R., & Federico, M. J. (2020). They just don’t take their medicines: Reframing medication adherence in asthma from frustration to opportunity. Pediatric Pulmonology. 55(3), 818-825. doi:10.1002/ppul.24643.

Hommel, K.A., Carmody, J., Hershey, A.D., Holbein, C., Kabbouche-Samaha, M., Peugh, J., & Powers, S. (2020). Digital therapeutic self-management intervention in adolescents with migraine: Feasibility and preliminary efficacy of “Migraine Manager.” Headache, 60(6), 1103-1110.

McGrady, M. E., & Ramsey, R. R. (2020). Using electronic monitoring devices to assess medication adherence: A research methods framework. Journal of General Internal Medicine, 35(9), 2704-2714. doi:10.1007/s11606-020-05905-z

Miller, V.A., Xiao, R., Slick, N. Feudtner, C., & Willi, S. (2020). Youth involvement in the decision to start continuous glucose monitoring (CGM) predicts subsequent CGM use. Diabetes Care, 43(10), 2355-2361.

Modi, A.C., Glauser, T.A., & Guilfoyle, S.M. (in press). Supporting treatment adherence regimens in young children with epilepsy and their families: Trial design and baseline characteristics. Contemporary Clinical Trials. doi:10.1016/j.cct.2020.105959.

Lin, N. Y., Ramsey, R.R., Miller, J. L., McDowell, K.M., Zhang, N., Hommel, K. A., & Guilbert, T. W. (2020). Telehealth delivery of adherence and medication management system improves outcomes in children with asthma. Pediatric Pulmonology. 55, 858-865. doi:10.1002/ppull.24623.

Plevinsky, J.M., Denson, L.A., Hellmann, J., Minar, P., Rosen M.J., & Hommel, K.A. (2020). A micro-longitudinal approach to measuring medication adherence in pediatric inflammatory bowel diseases. Journal of Pediatric Gastroenterology and Nutrition. 71(3), 366-370 doi:10.1097/MPG.0000000000002778

Plevinsky, J.M., Young, M.A., Carmody, J.K., Durkin, L.K., Gamwell, K.L., Klages, K.L., Ghosh, S., & Hommel, K.A. (2020). The impact of COVID-19 on pediatric adherence and self-management. Journal of Pediatric Psychology, 45(9), 977–982. doi:10.1093/jpepsy/jsaa079

Plevinsky, J.M., Gutierrez-Colina, A.M., Carmody, J.K., Hommel, K.A., Crosby, L.E., McGrady, M.E., Pai, A.L.H., Ramsey, R.R., & Modi, A.C. (2020). Patient-reported outcomes for pediatric adherence and self-management: A systematic review. Journal of Pediatric Psychology, 45(3), 340-357. doi:10.1093/jpepsy/jsz096

Ramsey, R. R., Plevinsky, J. M., Kollin, S. R., Gibler, R. C., Guilbert, T. W., & Hommel, K. A. Systematic review of digital interventions for pediatric asthma management. (2020). Journal of Allergy and Clinical Immunology: In Practice, 8(4),1284-1293. doi:0.1016/j.jaip.2019.12.013.

Sawnani, H., Mayer, O.S., Modi, A.C., Pascoe, J.E., McConnel, K., McDonough, J.M., Rutkowski, A.M., Hossain, M., Szczesiak, R., Tadesse, D.G., Schuler, C.L., & Amin, R. (2020). Randomized trial of lung hyperinflation therapy in children with congenital muscular dystrophy. Pediatric Pulmonology, 55, 2471-2478 doi:10.1002/ppul.24954.


Wetter, S.E., Schmidt, M., Rietta, C., Gutierrez-Colina, A., Neely, T., Glaser, N., Wagner, J.L., Smith, G., Huzsti, H., Guilfoyle, S.M., Patel, A.D., & Modi, A.C. (March 2020, virtual session). Use of empathy mapping to develop a pediatric epilepsy mHealth adherence intervention. Poster to be presented at the Society of Pediatric Psychology Annual Conference, Dallas, TX. (National meeting).


Dr. Timothy Zeiger's adherence based private practice!

Telemedicine and Pediatric Pain: We are Not in Kansas Anymore

Katherine S. Salamon, PhD

Program Director, Integrated Pain and Wellness Program

Pediatric Psychologist

Nemours Children’s Health System/AIDHC

Catherine Stewart, PhD

Post-doctoral Fellow, Pain Treatment Service

Boston Children's Hospital

Harvard Medical School

Emily Wakefield, PsyD

Assistant Professor of Pediatrics, University of Connecticut School of Medicine

Pediatric Psychologist, Division of Pain and Palliative Medicine

Connecticut Children’s

Sara E. Williams, PhD

Associate Professor of Pediatrics, University of Cincinnati College of Medicine

Clinical Director, Functional Independence Restoration (FIRST) Program

Cincinnati Children’s Hospital Medical Center

Healthy, independent self-management and positive adherence to treatment plans are core tenets for successful management of pediatric chronic pain. As the rest of the world also experienced, our typical clinical, research, and training efforts to support effective chronic pain management were turned upside down in 2020. We had to adapt—and fast—to support our patients and families, continue advancing pain science, and support the next generation of pediatric pain psychologists. On October 23rd, 2020, several members of Division 54’s Pain Special Interest Group (SIG) started off their annual Fellowship Pain Didactic Series with a review of the impact of COVID-19 on the field of pediatric pain. Specifically, four presenters gave their perspectives on the adjustments that have been made to clinical, research, and training practices, which are summarized in this article.


Katherine S. Salamon, PhD, Pediatric Psychologist

Program Director, Integrated Pain and Wellness Program, Nemours/AIDHC

Background on our program:

  • Outpatient only pediatric chronic pain program that serves DE, northeast MD, southern NJ, and southeast PA
  • Main multidisciplinary treatments: Medical evaluation, Psychology, PT, OT, yoga, massage, healing touch

Immediate adjustments to COVID-19:

  • Created program email to send recommendations to current patients and families to help them stay on track with their treatment on their own when appointments were not available
  • Continued team meetings on a virtual platform via WebEx
  • Telehealth yoga added to help children stay active at home
  • Expanded resources in EMR including a change to telehealth treatment

Benefits of engaging in telehealth:

  • Continuing treatment to promote ongoing adherence and adapt the care plan to COVID
  • Improved access and adherence to treatment for some patients due to convenience
  • “Real life” sneak peeks into patients’ home lives allowed more tailored interventions—for example, getting a “tour” for a home enabled problem solving of where and how to carry out treatment recommendations for exercise, healthy habits, and coping skills
  • Creative thinking for delivery of services—using chat feature to write down homework plan, apps to track and report adherence to treatment


  • Technology—interruptions in internet service can really throw off the flow of a session
  • “Real life” sneak peeks also pose barriers to a smooth session when siblings, pets, etc. interrupt
  • Investment in treatment can wane without effort to attend in person sessions—while it’s “easier” to attend sessions from home, some of the typical focus and dedication to treatment can be different



Sara E. Williams, PhD, Associate Professor of Pediatrics, University of Cincinnati College of Medicine

Clinical Director, Functional Independence Restoration (FIRST) Program, Cincinnati Children’s Hospital

Functional Independence Restoration (FIRST) program:

Immediate effect of COVID-19 on inpatient programming:

  • Changes in personnel providing in person treatment were examined; there was a 50% loss of in person treatment during active lockdown which significantly limited intervention time
  • Inpatient pain rehabilitation is an elective admission, and most elective procedures and admissions were discouraged during active lockdown
  • Part of weekend pain programming involved patients going into the community for passes to improve self-management, which would be impossible given community restrictions
  • The majority of patients (greater than 90%) admitted to the program come from out of state and needed to travel to the hospital which posed an additional risk
  • As of mid-March 2020, the leadership team decided to complete current admissions, then close admissions until it was safe and prudent to reopen; the program was ultimately closed to new admission for 9 weeks

Reopening the FIRST program:

  • During the closure, weekly leadership team meetings were held virtually
  • Reviewed safety/stability of unit, hospital
  • Decision: reopen only when full team available to treat

Once the hospital was open to elective admissions, addressed program adjustments:

  • Hybrid in person/telehealth model to allow for visits from all disciplines
  • Reduced census to 1 patient (versus 2-3 patients) at first and triaged to allow most impaired patients earlier treatment
  • Advanced screening prior to arrival to assess for COVID-19 risk
  • Adjusted admission time allowing additional time for safe travel
  • Setting expectations regarding restrictions with families for the changes that would be present during the admission, including masking, hospital visitor restrictions, and inability to leave the hospital once admitted for community passes

The program was successfully reopened in May 2020 and has now returned to a typical census; ongoing efforts and program adaptations are as follows:

  • Emphasis on virtual team communication to continue the interdisciplinary focus
  • Ongoing collecting and monitoring of outcomes for clinical and research purposes, moving to electronic data capture when possible
  • Adjustments to clinical intervention made to support patients’ carry over of functional gains in the program to the home setting considering community limitations:
  1. Promotion of home exercise in safe environments, such as at home and outdoors when possible, using technology to help adherence
  2. Promotion of engagement in regular school programming even if virtual
  3. Brainstorming ways to improve self-management at home considering limitations to social engagement, family support, etc.



Emily Wakefield, PsyD, Pediatric Psychologist, Division of Pain and Palliative Medicine, Connecticut Children’s

Assistant Professor of Pediatrics, University of Connecticut School of Medicine

What has happened to research?

Ongoing studies:

  • Initial Pandemic Shut down Barriers
  • No patient access for research recruitment or intervention
  • Some institutions faced research department furloughs for non-grant funded research projects.Thus, delays in research have occurred in the initial months of the pandemic.

Current Study Adjustments:

  • Pivot to electronic methods of informed consent, data collection and dissemination
  • Virtual formats of intervention studies were developed
  • Developed safety protocols specific to address pandemic needs
  • No cost extensions will likely be instituted

Research opportunities:

  • Many calls for how COVID-19 is impacting our health
  • Inclusion of COVID-19 impact measure to research protocols in order to evaluate pandemic-related outcomes
  • Due to the health inequities of the pandemic, there have been several health disparities funding opportunities



Catherine Stewart, PhD, Post-doctoral Fellow, Pain Treatment Service, Boston Children’s Hospital

What is a fellow’s perspective on transitioning to telemedicine?

Program transitions

  • Immediate changes to convert outpatient care to telehealth
  • Intensive rehabilitation program restructuring to allow for partial telehealth, partial in person treatment
  • Changes to electronic recruitment, consent, participation for research participants
  • Opportunity to observe program development in real time as supervisors learn how to adapt programs

Adaptations for patient care

  • Privacy, behavioral observations, behavior management, alliance develop differently over telehealth
  • New games & therapy tools to promote engagement in telehealth
  • Additional time spent using supportive therapy techniques
  • Thinking creatively about exposures and increasing functioning in the broader context of a pandemic; increased flexibility with behavioral expectations
  • Increased self-management demands for some youth as they receive less adult supervision during the day (may or may not have these skills)

Adaptations to supervision and interdisciplinary communication

  • Rapport/relationship building via telehealth and online communications with new multidisciplinary teams
  • Learning about team culture online may take more (team meetings, online social events)
  • Changes in structure as supervision becomes primarily telehealth

Transitions in the face of general uncertainty & collective trauma

  • Common theme for patients and families in addition to baseline challenges
  • Highlights importance of self-care and other ways to protect against provider burn out

We hope it’s been helpful to review the areas of change we’ve all experienced during COVID-19! We also highly recommend the following resource:

Learn more about the Division 54 Pain SIG at our website!

Promoting Adherence and Self-Management amongst Youth Living with Chronic Pain during the COVID-19 Pandemic: The Perspective from a Psychology Trainee

Melissa A. Young, PsyD

Staff Psychologist I

Behavioral Medicine and Clinical Psychology

Cincinnati Children’s Hospital Medical Center


Experiencing the COVID-19 pandemic, as a psychology post-doctoral fellow embedded within the Pediatric Pain Program at The Hospital for Sick Children (SickKids), the largest pediatric pain program in Canada (D’Alessandro et al., 2020), was a surreal experience. At the beginning of the 2019-2020 training year, the majority of clinical care and training occurred in-person through participation in multi-disciplinary patient appointments, pain-focused psychological assessments, as well as pain-focused individual and family psychotherapy sessions.

At the beginning of March 2020, all clinical care and training was abruptly transitioned to virtual platforms in order to align with social distancing and other pandemic-related requirements, while also meeting the needs of the patient population. Within the Pediatric Pain Program at SickKids, all clinical services continued to operate and nearly seamlessly transitioned to virtual care due to the dedication of a multi-disciplinary pediatric chronic pain healthcare team (D’Alessandro et al., 2020).

Shortly after the transition to virtual care, the ramifications of the pandemic began to unfold. As expected, many youth receiving multi-disciplinary care within the pediatric pain program began reporting increased depressive symptoms, amplified pain, poor sleep habits, etc. Although adverse ramifications were expected to be experienced amongst youth, promoting adherence and self-management as a psychology trainee, required creativity and flexibility.

One of the primary modes of psychological evidence-based intervention was based on Cognitive Behavioral Therapy (CBT) for Chronic Pain, although other therapeutic modalities were employed (e.g., Acceptance and Commitment Therapy, mindfulness, etc.). Considering that youth were not attending in-person treatment sessions, it was imperative that they remained engaged in the treatment process. Thus, several individual and group interventions were developed and/or adapted, using existing manualized protocols and/or electronic programs, to promote adherence and self-management amongst youth receiving clinical care for chronic pain conditions (some examples are below).

As the COVID-19 pandemic continues to impact the delivery of healthcare across the world, it is imperative that pediatric psychologists and other healthcare professionals continue to share their experiences, with developing and adapting evidence-based therapeutic modalities and interventions for virtual delivery, as lessons learned throughout the pandemic have the potential to transform healthcare delivery for years to come.


A virtual group targeting adolescents diagnosed with chronic pain conditions and their caregivers was developed and offered through Zoom Healthcare. Although the focus of the group was to provide psychoeducation, based on the CBT treatment model for chronic pain, another fundamental component was affording youth and their caregivers an opportunity to learn self-management strategies (e.g., cognitive, behavioral, etc.) from each other.

Cognitive Modification

Identifying, tracking, and challenging inaccurate thoughts surrounding pain (e.g., pain catastrophizing), in-between sessions, can be accomplished by having youth complete thought journals, belief experiments, comfort zone challenges, and facing your fears challenges within the MindShift CBT iPhone/Android Application, which can then be emailed to the psychologist before the next session.

Graded Exposure

Psychologists and physical therapists can partner together to deliver exposure-based interventions, when clinically indicated, specifically to youth who actively avoid physical movement (e.g., walking up and down the stairs, etc.) secondary to high levels of pain-related fear (Simons et al., 2019).

Mindfulness-Based Stress Reduction (MBSR)

The MBSR group for youth diagnosed with chronic pain, initially delivered as an in-person group (Ruskin et al., 2017), can be held virtually with 8-10 participants per session. Group sessions can be held weekly, over the course of 8 weeks, via Zoom Healthcare or another healthcare approved videoconferencing platform. During the group, youth are afforded the opportunity to share their experiences with others surrounding the mindfulness-based exercises completed in-between sessions. In-vivo mindfulness-based exercises can be practiced during sessions and youth can then be provided an opportunity to discuss their experiences with other group members following each exercise.

Electronic Resources to Promote Adherence and Self-Management amongst Youth Diagnosed with Chronic Pain

Solutions for Kids in Pain (SKIP) developed a handout Pain Management Apps and Online Resources, which includes numerous iPhone/Android apps and online resources within the following areas: (1) Symptom tracking and pain self-management; (2) Websites; (3) Mindfulness; (4) Distraction; and (5) Stress and Mental Health.


D’Alessandro, L., Brown, S. C., Campbell, D., Ruskin, D., Mesaroli, G., Makkar, M., & Stinson, J. (2020). Rapid mobilization of a virtual pediatric chronic pain clinic in Canada during the COVID-19 pandemic. Canadian Journal of Pain, 4, 162-167.

Ruskin, D. A., Gagnon, M. M., Kohut, S.A., Stinson, J.N., & Walker, K.S. (2017). A mindfulness program adapted for adolescents with chronic pain: Feasibility, acceptability, and initial outcomes. Clinical Journal of Pain, 33, 1019-1029.

Simons, L. E., Harrison, L. E., O’Brien, S. F., Heirich, M. S., Loecher, N., Boothroyd, D. B., Vlaeyen, J. W. S., Wicksell, R. K., Schofield, D., Hood, K. K., Orendurff, M., Chan, S., & Lyons, S. (2019). Graded exposure treatment for adolescents with chronic pain (GET Living): Protocol for a randomized controlled trial enhanced with single case experimental design. Contemporary Clinical Trials Communications, 16, 1-11.

Clinical Impact of COVID-19 on Self-Management & Adherence in an IBD Clinic

Jennie David, Ph.D.

Pediatric Comprehensive GI Psychology Post-Doctoral Fellow

Nationwide Children's Hospital


Hannah N. McKillop, PhD

Pediatric Psychologist

Psychiatry and Behavioral Health
Nationwide Children's Hospital


The Inflammatory Bowel Disease (IBD) Clinic at Nationwide Children’s Hospital is a multidisciplinary team that has, like many others, experienced notable changes during the COVID-19 pandemic. Prior to the pandemic, many IBD clinics had a dedicated psychology provider. As clinical care moved first to telephone visits and then quickly to Zoom, psychology remained an integral part of these services. This allowed us to reflect on past standard practices and continue to transform our care as healthcare professionals must learn to pivot with new challenges. One of the unique opportunities of participating in joint telehealth visits has been to observe the patient in the home and identify factors that may impact adherence. For example, we observed several patients who had afternoon appointments and presented in their pajamas, which lead to discussion of sleep habits and timely medication administration.

Given the general disruption and change in schedule that many individuals have experienced during the pandemic, psychology providers routinely assessed changes to sleep, daily structure, and psychosocial adjustment for their potential impact on adherence behaviors, as well as coping and ongoing adjustment to chronic illness. We have also worked together to assess family comfort in seeking in-person care during the pandemic, which notably impacts patients with IBD who receive infusions (e.g., Remicade) as their primary treatment and, possibly, their adherence to these in-person interventions. Additionally, comfort levels appeared to impact adherence to recommended medical tests needed to inform treatment, such as colonoscopies or bloodwork.

If a silver lining can be found, the pandemic offered psychology providers in our multidisciplinary clinic with additional opportunities to assess adjustment (especially to the pandemic), as well as to normalize and provide interventions as relevant. Our team is optimistic that these timely interventions have helped to increase family understanding and willingness to have joint psychology/medical provider visits in recognition that psychology can distinctively support the pediatric IBD population.

Highlights from the SIG’s Recent Manuscript on the Impact of COVID-19 on Pediatric Adherence & Self-Management

Plevinsky, J.M., Young, M.A., Carmody, J.K., Durkin, L.K., Gamwell, K.L., Klages, K.L., Ghosh, S., & Hommel, K.A. (2020). The impact of COVID-19 on pediatric adherence and self-management. Journal of Pediatric Psychology, 45(9), 977–982. doi:10.1093/jpepsy/jsaa079

"Every aspect of the Pediatric Self-Management Model (individual, family, community, and healthcare system) has been impacted by COVID-19. The pandemic has presented unique circumstances that have the potential to both positively and negatively affect pediatric adherence and self-management in youth with chronic medical conditions.

For example, the impact of daily stressors that may impact adherence such as missed school, participation in activities, and concerns about friends have likely lessened due to social distancing guidelines. Additionally, at least one study among adults with asthma (e.g., Kaye et al., 2020) observed a positive change in rates of adherence during the COVID-19 pandemic, providing added support for improved adherence and self-management for a subgroup of individuals.

However, barriers to pediatric adherence and self-management exacerbated by the pandemic may disproportionately affect underserved and vulnerable populations, potentially resulting in greater health disparities.

Given the potential for widespread challenges to pediatric disease management during the pandemic, ongoing monitoring and promotion of adherence and self-management is critical. Technology offers several opportunities for this via telemedicine, electronic monitoring, and mobile apps.

Youth with chronic medical conditions and their families are resilient, and with support from their medical teams and behavioral health providers, can achieve optimal adherence and self-management despite the challenges brought about by the COVID-19 pandemic. However, we must acknowledge the potential enduring adverse effects of the pandemic on pediatric adherence and self-management."

Stay in Touch

We'd love to hear from you! Please reach out to Kate Gamwell ( if you have ideas for the spring newsletter and/or would like to contribute or highlight someone's work.