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Knowledge Translation Lecture: Providing Best Practice in Neonatal Intensive Care and Follow-up: A Clinician-Researcher Collaboration

Brown, Shaaron E. PT, DPT; Dusing, Stacey C. PT, PhD

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doi: 10.1097/PEP.0000000000000634
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The knowledge translation lecture was developed by the Academy of Pediatric Physical Therapy to highlight the dynamic relationship between pediatric physical therapy clinical practice and evidence.1,2 Implementing change is a slow and iterative process that required participates to evaluate current conditions, opportunities, and barriers.3 This process is often followed by the development of a systematic implementation plan using a Plan-Do-Study-Act (PDSA) cycle.3 Prior to the early 2000s, survivability and reduced medical complications were a primary focus of neonatal care.4 Although a lack of focus on long-term outcomes is common in many critical care situations, the lack of intentional planning for developmental support appeared to place infants in the neonatal intensive care unit (NICU) at increased risk of developmental delays.5 Limited research was available to identifying which infants would have developmental delays or cerebral palsy (CP). This left medical and therapy teams to make their own judgments about who required developmental interventions.6 As a result, many providers took a “wait and see” approach to treatment rather than providing care with a focus on preventing or ameliorating delays before they were present. The lack of intentional support for the infants' development in the NICU appeared to translate to families who were discharged with limited to no education on the support needed for their infants' development.7

A decade ago, a clinical physical therapist, a physical therapy faculty member, and an administrator for acute physical therapy identified a shared goal of implementing emerging evidence for early intervention (EI) to improve developmental outcomes of infants born premature in an academic medical center.8 Our first step was to reflect on current therapy practice and evaluate what policies or practices were in place that addressed developmental outcomes of infants born preterm. While excellent medical care was provided routinely and the infants' basic developmental needs were being met, emerging evidence on the survival of younger infants with longer NICU admissions suggested the need to increase focus on supporting development. An evaluation of policies and clinical practice patterns that suggested infants' survival was the primary focus of the NICU team with success measured in discharges to home. Developmental outcomes were not a priority and were not measured as an outcome metric for direct NICU care.

There is often a disconnect between academic physical therapy and clinical practice. Intentional effort to build and retain these important collaborations is necessary. Emerging academic faculty must make a conscious choice about the timing and need for providing clinical service as they develop their career goals. This is especially true in tenure track or research intensive positions, where research funding and dissemination are highly valued. However, strong training, dedicated full-time pediatric faculty positions, and administrative support allow faculty to blend their passion for outstanding clinical care with research and teaching. Doing so requires collaboration with motivated and engaged clinical therapists who share the vision of providing best practice while contributing to the evidence.

Clinical appointment at academic medical centers may provide faculty with opportunities to participate in clinical care while maintaining an active research and teaching position. We shared an interest in advancing the developmental care of infants in the NICU. This led to an initial grant proposal to support parents' increased understanding to support development of their infants. Through a series of research grant–funded focus groups with parents of infants in the NICU, we were able to evaluate the parents' knowledge of development and their preference for learning about development.7 Engagement of clinical therapists and researchers around this mutually interesting question supported a growing collaboration.


Engagement with professional groups can improve knowledge translation. For example, participation in the Neonatology Special Interest Group of the Academy of Pediatric Physical Therapy provided an opportunity to update the Neonatal Physical Therapy Practice Guidelines9 and develop the Academy of Pediatrics Physical Therapy fact sheet on the need for advanced training before providing care in the NICU. Participation in local and state groups that advocate for infants with disabilities can enhance research and clinical collaborations. For example, participation in the Prematurity Workgroup in the Virginia Infant and Toddler Connection provided an opportunity to work with interdisciplinary clinicians, parents, and policy makers to expand the eligibility criteria for EI in Virginia to include infants born at less than 29 weeks or with a hospital stay of longer than 28 days. The policy manual for eligibility was updated to reflect the use of medical records to provide proof of meeting these new criteria.10

The practical aspects of implementing policy changes take time, an advocate, and someone to lead the change in each facility. As the policy changes were discussed in the community, it became clear that uncertainty of which assessments provided ideal documentation of the risk of developmental delay was a challenge to EI enrollment post-NICU discharge. Frequently used EI assessment tools limited the enrollment of many infants referred directly from the NICU because the tools were not sensitive. They could not detect a 25% delay in an infant who was only a few weeks prior to or passed the expected date of full-term birth. Many providers reported uncertainty on the best recommendations to provide for families of infants born premature before a delay became evident. The Virginia Infant and Toddler Connection recognized this gap in knowledge and developed training modules on prematurity for clinicians who work with infants born preterm.11

These clinical and service opportunities supported the development of research questions and increased collaboration between clinician and researcher. Discussion following work group meetings about policy, evidence, and implementation challenges helped demonstrate alignment in our goal to support infants and families. This feedback loop strengthened both graduate-level and postprofessional physical therapy education with increasing collaborations for clinical and classroom teaching. To foster a growing collaboration between a researcher and a clinician, a culture of mutual respect and learning must be prioritized. Each member of a collaborative team must feel empowered to bring unique knowledge, skills, and passion to the collaboration.


Another step toward making lasting changes in a system of care is the engagement of stakeholders in the planning process. Stakeholders in most NICUs include nurse managers, nursing staff, therapy administrators, and other therapists in the health system who may not understand the demands of the NICU. Using the PDSA cycle, the therapy team researched and planned an educational session for the medical team on the importance of positioning (Plan). Following the presentation, the medical team agreed to the use of standard referrals for all infants born at less than 30 weeks or who were difficult to position. The NICU physical and occupational therapists held weekly rounds to review the positioning of newly admitted infants or those who needed reassessment through an interdisciplinary collaboration (Do).12 The number of referrals increased (Study) and positioning collaborations between therapy and nursing became the standard of care (Act). Implementation science and knowledge translation need ongoing PDSA cycles to advance care. Through a similar system, a change in practice to obtain standard referrals for developmental assessments was implemented for high-risk infants who were medically stable. In our NICU, infants are considered at high risk for developmental delays if they meet any of the following criteria: born at or less than 32 weeks of gestation, post–hypoxic-induced encephalopathy, head or full body cooling, extracorporeal membranous oxygenation, spina bifida, have congenital/genetic conditions, musculoskeletal or neuromuscular conditions, grade III/IV intraventricular hemorrhage, periventricular leukomalacia, brachial plexus injury, or neonatal abstinence syndrome.

We worked with the nursing leadership to develop and provide required training of nursing and other medical staff to ensure that the staff received the evidence-based information on ways to support development beginning in the NICU.9 In collaboration with a nursing leader, we arranged and got buy-in from management for required in-services for the nursing staff on how to effectively collaborate to implement the best practice in developmental care (Plan). Our workshop was led by a nurse practitioner and a physical therapist who together provided evidence-based information about state regulation, stress cues and calming strategies, cue-based feeding for infants born preterm, optimal positioning, and age-appropriate play.13,14 The team also provided information about the development of movement patterns and the importance of supporting active movements. Finally, the team concluded with ways to support parents in developing the skills needed to support their infants at home after NICU discharge (Do).9,15–19

Following this education and introduction of standard referrals, there was a demand for increased therapy services, thus supporting a request for increased staff time for the NICU (Study). Our implementation of the programs we proposed to the medical and nursing teams was successful in part because we had administrative support and adequate NICU competent therapists to provide physical therapy services (Act).12

We recognized the need to use outcome assessments in NICU therapy and follow-up care. We determined that the Test of Infant Motor Performance (TIMP) was the best outcome measure for our NICU physical therapy team's goal of discriminating between infants with and without delays in motor control and to evaluate the effect of interventions.20 The use of this valid and reliable tool allowed us to determine and justify the need for direct therapy services in the NICU or limit our services to parent education with a reassessment plan every 2 weeks. The TIMP was used in our NICU follow-up clinic adding additional value as we could evaluate change over time from NICU to a follow-up visit at 3 months of adjusted age. The ability to quantify delays and the efficacy of our interventions demonstrated increasing value to the medical team.

A standard of practice in the NICU was set in motion with consistent therapy referrals, standardized assessment, consistent positioning to support the infant, early introduction of parent education, and referrals to EI and the NICU follow-up clinic. A shift in culture occurred slowly through a collective and intentional focus on developmental outcomes for infants born preterm. The encouragement and support by the physical therapy team and the chief of neonatology, who expected interdisciplinary teamwork, sustained increased developmental support.


Transition from the NICU to home is a difficult process for many families.21 Neonatal intensive care unit personnel can reduce parental stress through open communication, training in reading developmental cues, and providing parents with opportunities to gradually increase their roles in caring for their infant.22,23 A NICU orientation booklet providing information on developmental care and the roles of team members, starting discussions about EI weeks before discharge, and Next Steps, a discharge teaching packet, were ways we supported parents during the transition from the NICU to the follow-up clinic.

Following the recommendation of the state work group to refer infants who meet eligibility criteria for EI prior to discharge, our NICU developmental committee began developing a plan and implementing a quality improvement program to track referrals to EI (Plan). We created a database that was updated weekly and flagged infants who met the high-risk eligibility criteria. This reminded the team to discuss EI with parents. A therapist or a social worker discussed EI with the parent and completed the referral process if a parent provided consent (Do). The parents of infants who did not have a discussion about EI prior to discharge were contacted by phone and mailed the information. From the database, monthly reports were generated on the number of eligible infants, number referred to EI, and number who declined or were missed (Study). After a year of data collection, we reached out to the EI programs to capture enrollment and service data for infants of families who had provided consent for reciprocal communication between EI and the NICU during the referral process. Through the PDSA process, we improved our documentation system for referrals to EI, trained medical staff to answer questions about EI, and improved the consistency of our referrals.

As is common in knowledge translation, as we acted to complete 1 implementation cycle, we developed a new plan to determine whether the children we were referring to EI were receiving services. We collaborated with the local EI programs to improve communication with parents of eligible infants through weekly meetings held in the NICU. Through our evaluation of this collaboration, we found that the volume of referrals completed by the NICU staff had not changed and there was no change in compliance with our referrals. Given the challenges of coordinating these meetings and the limited benefit, the NICU and EI programs agreed on discontinuing the meetings. While this Plan-Do-Study-Act cycle resulted in a temporary program that was discontinued, we continue to track referrals to EI and follow up on EI enrollment/participation for all infants who return to the NICU follow-up clinic. The process and trial of change resulted in ongoing improvements even without full implementation and retention of the plan.

In our quality improvement measurements, we found that parents' presence and engagement in their infants' care near the time of discharge impacted EI enrollment and were variables among families. Our next implementation goal was to increase early parent engagement. It took 2 years to develop the plan and required educational materials before we could act. An orientation booklet developed by the team included information on the role of therapy and developmental care.24 The “Next Steps” discharge packet contained information about community resources and handouts (commercially available or created by the committee) to highlight issues including car seat safety, safe sleep environments, EI, adjusting for prematurity, age-specific toys, progression to solid foods, and transition to home using developmental care. When all topics were reviewed by the parent and a staff member together, the parent was provided with either a book or a toy for the infant. To support the staff and increase the likelihood of consistent staff knowledge when reviewing the materials with parents, a self-paced online learning module reviewing the content and notebook with a copy of each resource and the committee's suggested talking points was created. This implementation cycle was long and the outcomes were mixed with some barriers related to reordering educational materials and time spent teaching identified in the study phase of this implementation cycle. However, like previous examples, lasting changes in NICU practice and education made this process a success.

In summary, the development of a parent developmental engagement program was an iterative process of planning, doing, studying what worked, and acting to make changes, adopt, or abandon the plan.12 With more consistent referrals for developmental support, therapists were engaged with more families providing information to parents weeks and sometimes months before discharge. Nursing and medical staff were engaging more parents in discussions about development and the transition to community resources. While not fully quantified, we believe that the increase in engagement of parents in the NICU also improved the no-show rate in the NICU follow-up clinic.


Over the last 2 decades, the importance of early detection of motor disabilities such as CP has been highlighted in perspective papers, research reports, and more recently by the National Institutes of Health.25,26 Therapists play important roles as team members in NICU follow-up clinics or in clinical practice and should be part of early detection and developmental assessment teams.25,27 We started our NICU follow-up clinic using selected outcome measures and added the addition of the Prechtl General Movement Assessment28 and the Hammersmith Infant Neurological Examination (HINE).29 This required a year of preparation and a PDSA cycle to demonstrate how and why to implement and the feasibility of implementing these assessments.

Today, we have an interdisciplinary follow-up clinic with a team that includes an attending physician, neonatal fellow, dietician, psychologist, and physical therapist. We implemented the TIMP during the formation of our follow-up clinic and gradually in the NICU.20 The TIMP was selected on the basis of the tool's discriminative and evaluative properties, meaning its ability to detect delayed development and measure change over time. The ability of the TIMP to identify children at high risk of having future motor delays as early as 3 months was also critical for referrals to community therapy services. The Bayley Scales of Infant and Toddler Development was used at 12 and 24 months as it was considered the best available tool for measuring development on multiple developmental domains and is commonly used in clinical practice and research.30 This helped us differentiate children with global developmental delays from children with average cognitive abilities and motor impairments and children with only a language delay, each of which required a different referral plan. Other assessments we currently use include the Prechtl General Movement Assessment (GMA),28 the Alberta Infant Motor Scales,31 the Gross Motor Function Measure (GMFM), and the HINE. We see all infants at 3 months because 12 to 14 weeks is the most predictive age of assessment on both the Prechtl GMA and the TIMP.32–34 This information allows us to determine who we should refer for more in-depth neurological follow-up, therapy services, and how to support or reassure parents. Ultimately, looking at the developmental trajectory is the best way to understand a child's developmental course, thus a minimum of 3 visits was needed in the ideal follow-up plan. Visits at 12 and 24 months allowed us to check in with families at the onset of walking and again after we stopped adjusting for prematurity at 24 months. We determined whether more developmental services were needed or whether ongoing motor or cognitive assessment is needed beyond the 2 years of follow-up. While these 3 visits are our standard, we have the flexibility to add assessment measures and/or have children return to clinic more frequently. When neurological concerns are noted, we add the GMFM Item Set35 and the HINE29 for children with a high risk or already identified as having CP. Having multiple visits with the GMFM and/or HINE allows us to provide realistic information to the families as well as share news of motor gains that can be measured on the GMFM but may be negligible on the Bayley. A developmental neurologist also participates in our clinic twice a month to see children at 6 months or 18 months of corrected age who have the highest risk factors, abnormal neuroimaging, absent fidgety movements on the Prechtl GMA at 3 months, or a HINE score of less than 63. This neurologist is often the physician who provides a diagnosis of CP. As a team, we may recommend that a child have neuroimaging completed before the 6- or 18-month visit so that the neurologist has the combination of 3-month GMA, 3 and 6 months of HINE scores, and neuroimaging to add to the 6-month clinical examination. Consistent with the international guidelines, the use of these tools in combination increases the confidence of our team to make a diagnosis of CP in the first 6 to 9 months of life. The assessments we have been using for several years provide consistency between therapists; provide data for clinical decisions such as who to referral audiology, EI or outpatient therapy, or a pediatric physiatrist; and allow us to track the developmental progression of infants with different risk factors that informs further medical interventions.25 In addition to improving the clinical practice, the process of planning, training (doing), reviewing the outcomes (studying), and acting to implement the GMA and the HINE in clinic provides many opportunities to share the benefits, methods, and guidelines for the early detection of CP with other professionals. With increasing exposure to this evidence, the rate of “buy-in” increased and the support for research on effective interventions for young infants with CP has increased. Thus, the relationship between the clinician and the researcher, including our discussions, collaborations in clinic, and training of other students and staff members, all also supported the ability of our facility to complete high-impact clinical trial research on the efficacy of physical therapy interventions. Recruitment rates and provider engagement all increased as a result of working to provide improved clinical care now and in the future.


We have developed a procedural manual including competencies and required training guidelines to staff the NICU and NICU follow-up clinic. The protocol contains information about the role of the physical therapist and describes the assessments and timeline for assessment as well as the rationale for their use and the training required to administer each assessment. This manual is used to provide education for physical therapists, interdisciplinary team members, and students. Saving previous versions also enables us to document the rationale for changes in practice over time.

There are logistical issues to resolve in order to implement changes including competing staffing needs, access to assessment supplies, and technology needs. To ensure PT coverage in the NICU and in follow-up clinic, we needed administrative support for the use of part-time physical therapists trained in the NICU and follow-up to ensure that clinic and NICU are adequately staffed. Developing and maintaining evidence-based practices in an acute care hospital require ongoing administrative support and a point person who takes ownership and ideally has dedicated program development or administrative time allotted for clinical implementation and sustainability.


Experience with parents during research visits, working on policy changes, and immersion in the literature to identify knowledge gaps and evidence on efficacy of interventions have helped shape the development of a collaborative parent and therapy intervention. Supporting Play and Early Exploration Developmental Intervention (SPEEDI) was specifically designed to bridge the perceived gap in care between the NICU and the home.36,37 We started on a path to understand the effect of an intervention grounded in key principles to engage families, support infant-initiated movements, and encourage exploration.38,39 The SPEEDI is currently being evaluated for efficacy in a multisite clinical trial ( Identifier: NCT03518736) after previously published feasibility and pilot trials.36,37

In addition to the work we both do on the SPEEDI studies, we have both been working with an outstanding group of collaborators to improve assessment and intervention for infants with motor delays who were learning to sit and reach.40 With funding from an APTA Academy of Pediatric Physical Therapy Planning grant, a team included Stacey Dusing, Reggie Harbourne, Cole Galloway, Michele Lobo, and Sally Westcott, who met regularly to merge experiences to design and complete a multisite efficacy study of the Sitting Together And Reaching To Play (START-Play) intervention.40,41 This project is in its fourth year and will help address some questions on the efficacy of focused, task-specific interventions ( Identifier: NCT02593825).41,42 Many of the principles of the START-Play intervention and the SPEEDI intervention overlap and both differ from the current service delivery models. While we believe in the principles, theoretical models, and pilot data that have been collected to develop these interventions, they are still theoretical without scientific confirmation.


Ongoing and authentic collaboration with clinicians since my transition from clinical practice to academics has increased the ability of my research to be applied clinically. Consideration of how each study impacts clinicians, children, and families helps me meet my research and career goals.

While research is my primary focus, my passion for clinical care increases and respect grows each year for clinicians, such as Shaaron, who are persistent in their quest to implement evidence in practice every day. It is not an easy task to make change. It means having the knowledge to advocate, the strength to get up each time an idea or PDSA cycle fails, sometimes financing your own training, and pushing for more administrative time to develop implementation plans. It is the strength of clinicians who are willing to step up and move evidence into practice that keeps our field moving forward.


Participating in research studies has transformed my perspective of evaluation, assessment, and delivery of interventions in pediatrics. I began with a desire to learn something new and contribute to a body of knowledge. I focused on reading research articles, being a keen observer, and making myself available for opportunities. Change was hard, as it required me to be open to feedback about how well my assessment scores matched those of another assessor and whether my intervention was meeting required adherence to each study's key intervention principles.37,41 Adherence and reliability metrics had never been a part of my clinical performance evaluation but became a part of my research performance evaluations. Through my research experience, I have developed a more consistent clinical practice for assessment and intervention. I now consider the reason for choosing an assessment measure and the purpose and rationale for interventions and include these factors in my clinical decisions, assessment, and treatment documentation. Exposure to research and discussion of theoretical models in support of intervention has helped me broaden my view of why motor-based interventions are important. Now my interventions and conversations with parents focus on intentionality of play and the benefits of supporting play as a way for the infant to learn about the world.40


Opportunities for sharing knowledge and clinical experience can be found in establishing a mentoring program for less experienced staff members, contributing to doctorate in physical therapy programs, and/or pediatric residency training. The protocol manuals and written competencies we have developed through the course of our practice change are key to consistently sharing information and preparing therapists to provide evidence-based practice.


No one person can do knowledge translation alone. While not all players are involved in each act of knowledge translation, most acts of translation have multiple players. Researchers have a role in pediatric physical therapy to test the predictive validity of assessments, measure the disparity in care, quantify the efficacy of interventions, and help understand the mechanism of action for pediatric physical therapy interventions. Identifying which questions are important, which will lead to discoveries that impact the day-to-day practice of physical therapy or lead to improved outcomes for children, is nearly impossible without clinician collaborators. Even the most interesting question may not be important, deserving of funding, or worth answering if we cannot move it from research to implementation. Each research question should have a translation plan. Sometimes a mechanistic question or a basic science question is not directly translatable but leads to translatable work. The knowledge translation plan cannot wait until a study is completed and published but should be integrated into the study development. The engagement of clinicians and families in the design of research is needed to truly elevate the effect of research. If we expect research to be implemented, it must be meaningful to the consumer—clinicians and families.

Students ask how best to discuss the evidence for or against an intervention with their clinical instructors. Our educational programs need to prepare students to be consumers of evidence and to discuss the evidence for and against assessments or interventions in a professional manner. Students need opportunities to apply evidence to clinical cases and present it effectively and professionally to peers and clinicians throughout their entry-level education if we are to prepare them to use the evidence and change practice throughout their careers.

Pediatric physical therapists need support policy change, administrative time, and resources for training on evidence-based practices. We cannot restrict our interventions to match policy if the policy is no longer consistent with the evidence. We need to examine policy implementation. For example, while an Individualized Family Service Plan must specify the services to be provided, it can include a plan of 24 visits over 12 months (in many states) and allow the therapist's discretion in implementing an intensive intervention with 12 sessions over 3 weeks, followed by a session per month. Yet, many providers are not aware of this type of option and write for PT twice a month, which limits the use of evidence on effective interventions that require short bursts of high-intensity interventions such as constraint-induced movement therapy in the EI setting.43 We must continue to advocate for the policy and its interpretation to match best practice for our clients.

Throughout our professional careers, we will experience assumptions that an intervention is effective, and then learn of evidence that suggests that the intervention may not be effective or that other approaches are more effective. We need to be open to considering this evidence even when it challenges what we do every day. I do not suggest that we need to stop an intervention the first time a study suggests that it has limited effect but is still safe. However, when a body of evidence emerges or multiple studies suggest that a different intervention is better at producing an outcome of interest, we need to be prepared to shift practice.25,40,44–46


As a clinician who needs to treat patients tomorrow, sometimes I struggle with which interventions to use. Should I use the same ones I always use, parts of a new intervention, or a new intervention? Health care dollars are limited and families have limited time dedicated to therapy. I must critically consider components of the intervention, reproducibility of the intervention in a clinical setting, and length of each intervention session that is needed to achieve a desired outcome. While having a toolbox of different interventions available is important, I cannot anticipate getting the same results as a study if I modify the dose, intensity, or mix the key principles of the intervention with other approaches. These considerations need to be a part of my everyday clinical care, which I may not have considered 10 years ago.

Participation in research can create a thirst for ongoing professional growth and enhanced clinical practice as evidence emergences and we incorporate new ideas and concepts into our practice. This collaboration between clinician and researcher also emphasizes the importance of training others. Knowledge and implementing changes in your practice are not enough. It is imperative that we educate and train those who desire growth and change within their own practice to make evidence-based practice more ubiquitous.

Knowledge translation is complex, variable, challenging, and rewarding. It is more than just coming to work and changing your own practice. It takes commitment, drive, passion, and relationships. It can be done. From the small changes such as writing protocols to practice changes such as starting a NICU follow-up or pediatric mentoring program, knowledge translation is achievable by each one of us. There is a place for you in the knowledge translation system. Whether you are a clinician, a researcher, or an educator, you have a role in asking important questions, generating new knowledge, and implementing it in practice.


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developmental follow-up; knowledge translation; neonatal; pediatric physical therapy; preterm

© 2019 Academy of Pediatric Physical Therapy of the American Physical Therapy Association