Early Intervention Post-Hospital Discharge for Infants Born Preterm

Can early intervention help this patient?

“Monica” was born at 32 weeks' gestation and remained in the neonatal intensive care unit (NICU) of her local hospital until she was 2 months' corrected age. The NICU discharge plan included a referral for Monica to her local early intervention therapy (EIT) program, with primary concerns of motor delay based on a score that was 2 standard deviations below the mean on the Test of Infant Motor Performance Screening Items (TIMPSI).¹⁷ A physical therapist initially assessed Monica's health status in her home at 2.5 months' corrected age using the International Classification of Functioning, Disability and Health (ICF) to structure the examination (Tab. 2).¹⁸ Monica's parents expressed concern that she was not doing things that other babies they knew in their community were doing. They want her to be able to keep up with other children academically when she goes to school and for her to be able to run and play like them. At the time of assessment, an identified strength was Monica's ability to suck and swallow infant formula from a bottle. She appeared to enjoy participating in her feeding routine, as evidenced by her smiles and alert facial expressions.

Monica's activity limitations (and strengths) were assessed with the Test of Infant Motor Performance (TIMP).¹⁹ Her TIMP score was −2.37 standard deviations. Monica's activity strengths and limitations included: (1) difficulty maintaining her head at midline in the supine position, with inability to turn her head past midline to the left when presented with a bright red ball; (2) good head righting into extension in the prone position but limited head control in supported sitting and when pulled to sit (inadequate head righting into flexion); (3) inability to roll past midline when rolling was facilitated from either the arm or the leg when positioned supine; and (4) ability to lie on her stomach on her parent's chest but limited ability to turn her head toward sounds in this position.

Monica exhibited body structure and function impairments, including periventricular leukomalacia (based on evidence from a magnetic resonance imaging scan), spasticity in both gastrocnemius-soleus muscles, absence of fidgety general movements, strabismic amblyopia of her left eye, overall muscle weakness, and limited motor control.

Personal factors for consideration included Monica's young (corrected) age, her Indo-Canadian ethnicity, her preference for being calmed through swaddling and singing, and her desire for being held by her mother. Environmental factors also were considered in assessing Monica's health condition. Monica was born to young, recently immigrated parents, and she was their first child. They lived in a small home with the paternal grandparents and had other extended family support in the community. Monica's health care services included ongoing ophthalmology follow-up (eventually including patching of her right eye), neonatal follow-up clinic assessments at ages 18 months and 3 years, pediatrician visits, and EIT services. Of the EIT services, physical therapy was available immediately, and Monica was placed on a waiting list for speech-language therapy and occupational therapy services. The physical therapist consulted with a regional speech-language pathologist and an occupational therapist until Monica was added to their regular caseloads.

How did the results of this systematic review apply to Monica?

First and foremost, the physical therapist considered the family's primary goal that Monica would be able to keep up with her peers in school by the time she enters kindergarten. Furthermore, the physical therapist questioned whether Monica's motor and cognitive development would benefit from a family-centered approach to early intervention that emphasized the relationships surrounding the child. The PICO (Patient, Intervention, Comparison, Outcome) question was formulated: Will focusing on both infant development and parent-infant relationships (rather than just infant development and milestones) improve motor and cognitive outcomes in an infant born at 32 weeks' gestational age? The clinician reviewed the information provided in the systematic review by Spittle et al¹⁵ and determined that the parameters were relevant and applicable to this patient.

Monica's age and health status matched the population examined in the review: infants born preterm with intervention commencing before 12 months of age. Of note, however, only 2 of the 21 studies included in the Cochrane review¹⁵ specifically mentioned periventricular leukomalacia as an inclusion criterion. Monica's parents had expressed that age-appropriate motor skills (run and play with friends) and cognitive skills (keep up academically) were important long-term goals for their family, and these areas were the primary outcomes of Spittle and colleagues' review.¹⁵ The systematic review provided evidence for the physical therapist serving Monica that using time and resources to address parent-infant relationships as well as motor milestones and mobility concerns could help to address this family's goals for Monica in both motor and cognitive domains.

Use of the TIMP for assessment of this infant was appropriate because this test was found in the study by Lekskulchai and Cole²⁰ to: (1) identify children at hospital discharge who could benefit from intervention and (2) be responsive to the effects of a physical therapy home program (provided from discharge to 4 months' corrected age) on an infant's motor performance. Population-based norms are available for infants up to 4 months' corrected age for use in identifying delay in preterm infants such as Monica.¹⁹ The TIMP also was shown in 2 studies to be a preferred method for parents to learn about the development of their premature infants.^21,22

In collaboration with the family and other team members, the physical therapist established the following FITT (frequency, intensity, time, type) care plan²³:

Frequency: The therapist initially made home visits once every week, decreasing the frequency to once every 3 to 4 weeks as parents became more comfortable with carrying out a home program independently. Parents carried out suggested activities daily during dedicated play and bonding time as well as within daily routines.

Intensity: Parents were coached on how to provide a “right-challenge” level for Monica to promote her independence in all areas of development. Strategies for providing assistance included physical support, verbal encouragement, fostering motivating environments and tasks, positive reinforcement, and peer and adult demonstration. The therapist advised the parents to look for cues that Monica might need a rest break (eg, rubbing her eyes, yawning, becoming upset and restless) or that she was ready for even greater intensity of activities (eg, smiling).

Time: Therapist sessions ran 60 to 90 minutes, depending on specific goals for each session. Based on the therapist's knowledge of the activity-based approach to early intervention,²⁴ the parents were coached to incorporate play and bonding suggestions into their daily routines and spent 30 minutes per day focused specifically on developmental play activities.

Type: In determining the content of the therapeutic care plan, the physical therapist considered all 3 tenets of evidence-based practice²⁵: current research literature (ie, the systematic review by Spittle et al¹⁵), the therapist's clinical experience (ie, family-centered approach in natural environments), and the values and preferences of Monica's family (ie, motor and cognitive goals, meeting others in the community). Home visits by the physical therapist focused on providing education to the parents on general infant development, reading and responding to infant cues (auditory, visual, tactile), positioning for feeding and play interactions (eg, modified prone lying on parent's chest), promoting independence in mobility, setting up motivating environments and tasks (eg, age-appropriate toys),²⁶ and using positive behavioral support strategies²⁷ (eg, using first-then statements, setting clear expectations and consequences) as Monica grew older. The therapist encouraged the family to use songs in their first language and social games (eg, peek-a-boo) to create positive interactions with Monica. Additionally, the therapist provided community resources and suggestions for community activities (eg, drop-in play centers), enabling the parents to meet other families with young infants and learn new songs and games in English. Specific home program activities progressed on an ongoing basis as Monica achieved new skills and with consideration to the family's priorities. Because Monica's parents expressed interest in using massage, the therapist encouraged and coached them to use it as a positive bonding experience with their child.²⁸

Monica continued to receive consultative physical therapy, speech-language therapy, and occupational therapy throughout her infant and preschool years; services were provided within her home, in her preschool, and in community settings (eg, swimming pool, playground). Spittle et al¹⁵ proposed that early intervention may have an impact on functional domains (activity and participation) even if physical outcomes do not change. They emphasized the importance of assessing children's abilities in their natural environments, away from a traditional testing situation.¹⁵ For these reasons, the physical therapist chose goal attainment scaling (GAS) as an ongoing outcome measure. Goal attainment scaling is an individualized, criterion-referenced measure of change that can be applied to various targeted areas such as motor, communication, academic, or social skills and is ideally suited for collaborative use with clients and families (as within this physical therapist's intervention plan).²⁹ The therapist had previous training in setting and rating GAS measures, reducing the possibility of bias in the use of this tool.²⁹ With input from the family and other team members, goals were set and reviewed every 6 months.

Because of Monica's strabismic amblyopia, her parents were concerned that her day-to-day functional vision would be impaired. Knowing that visual following of a black-and-white contrasting picture was considered a cognitive (as well as visuomotor) skill for young infants (3–4 months), the therapist developed a GAS measure aimed at enhancing Monica's visual skill following an enjoyable activity that her parents could carry out with Monica at home (see Tab. 3 for the GAS measure of visual following).

How well do the outcomes of the intervention provided to Monica match those suggested by the systematic review?

Monica's TIMP score at 4 months corrected age (reassessment) was −1.75 standard deviations from the mean. Based on predictive validity of the TIMP at 3 months' corrected age,^30,31 this score could be assumed to predict continued poor motor performance up to school age, which was indeed the case, as Monica's Alberta Infant Motor Scale³² performance at 12 months' corrected age was below average at −1.68 standard deviations and she continued to show delayed motor performance at school age. Consistent with the results of Lekskulchai and Cole,²⁰ provision of home-based intervention for Monica in the early months of life improved her TIMP motor performance from >2 standard deviations below the mean to −1.75 standard deviation at 4 months' corrected age.

As the Cochrane review suggested,¹⁵ early intervention did not prevent Monica from receiving a diagnosis of cerebral palsy; she continued to demonstrate spasticity in her gastrocnemius-soleus muscles, and at 18 months' corrected age, she received a diagnosis of spastic diplegia. Monica, however, consistently reached the individual goals in both motor and cognitive domains (eg, sitting, walking, identifying and matching colors, counting to 10) set for her by her parents, the physical therapist, and other team members. Monica was walking by 20 months' corrected age, placing her in level I of the Gross Motor Functional Classification System.³³

Monica continued along the trajectory of level I on the GMFCS³³ and was able to run and jump with feet together by kindergarten entrance at age 5 years. However, she required hand support to ascend and descend stairs safely, and she demonstrated limitations in gait speed compared with her same-aged peers. At kindergarten entry, Monica demonstrated almost age-appropriate receptive and expressive language and knew most letters of the alphabet. She demonstrated some learning challenges and benefited from repetition, low-distraction environments, and hand-over-hand facilitation for some fine motor skills such as using scissors. In her last year at preschool, Monica started to initiate more social interactions with other children. Monica's parents were able to articulate strategies for promoting Monica's independence and stated they knew how to access appropriate ongoing services as needed.

Can you apply the results of the systematic review to your own patients?

The findings of this Cochrane review can be applied broadly to infants born <37 weeks' gestational age who have been discharged from the hospital without major medical complications such as the need for oxygen and without comorbid congenital abnormalities or genetic disorders. The findings are applicable to infants born preterm with the presence of periventricular leukomalacia or cerebral palsy, as infants with these impairments were not excluded from the trials included in the review. Early identification of candidacy for this intervention is important, considering the young age at which participants in the reported studies began receiving services and considering that neural plasticity may be greatest early in development. Other considerations for implementing early developmental intervention with a focus on both infant development and parent-infant relationships include therapist and organization knowledge, time, and resources, as well as the family's expectations and desires.

What can be advised based on the results of this systematic review?

This systematic review evaluated developmental early intervention programs after hospital discharge for infants born preterm and was limited by the heterogeneity of intervention protocols, by the high risk of selection, performance, and attrition biases across studies, and by the confounding services provided to the control groups within trials. Spittle and colleagues¹⁵ concluded that there is evidence for early intervention programs to significantly affect cognitive outcomes at infant and preschool ages and to have a small effect on motor outcomes at infant age. Interventions aimed at combining an infant development focus with parent-infant relationships were found to have a greater impact on cognitive development, supporting a holistic family-centered approach to early intervention services. Although early intervention programs are not likely to affect rates of cerebral palsy in infants born preterm, functional gains in cognitive and motor skills can reasonably be expected following a program's implementation.