20 Participants Needed

Caregiver Training for Brachial Plexus Injury

(CTP-BPBI Trial)

Recruiting at 1 trial location
JW
Overseen ByJennifer Wingrat, ScD, OTR/L
Age: 18+
Sex: Any
Trial Phase: Academic
Sponsor: Hugo W. Moser Research Institute at Kennedy Krieger, Inc.
No Placebo GroupAll trial participants will receive the active study treatment (no placebo)

Trial Summary

Will I have to stop taking my current medications?

The trial information does not specify whether you need to stop taking your current medications.

What data supports the effectiveness of the treatment Pilot Training Protocol for brachial plexus injury?

The research highlights the importance of emotional and social support in recovery from brachial plexus injuries, suggesting that caregiver training could enhance these aspects and potentially improve rehabilitation outcomes.12345

How does the Pilot Training Protocol treatment for brachial plexus injury differ from other treatments?

The Pilot Training Protocol for brachial plexus injury is unique because it focuses on training caregivers, which is not a standard approach in existing treatments. This method emphasizes the role of caregivers in the recovery process, potentially improving patient outcomes by involving them more directly in the care and rehabilitation of individuals with this condition.25678

What is the purpose of this trial?

The brachial plexus is a network of nerves that exit the spinal cord from the C5-T1 nerve roots and provide all motor and sensory function to the arm from the shoulder to the fingers. Injury to the brachial plexus due to traction forces during labor and/or delivery causing the nerves to stretch or tear occurs in 0.9 out of 1000 live births. As many as 30% of infants with brachial plexus birth injury (BPBI) have paralysis or weakness in one arm resulting in lifelong impairment in arm function with joint contractures, the shortening of tendons, ligaments and muscles, leading to reduced range of motion (ROM), being a common complication and major source of disability. A primary goal of early management of BPBI is to use passive range of motion (PROM) (stretching) to improve and/or maintaining shoulder ROM due to the known risk of shoulder contracture within the first year of life. Infants who develop contractures face challenges in overall sensory-motor development and are less able to participate in meaningful occupations and activities of daily living due to limited upper extremity ROM. They are also at risk for subsequent surgeries throughout their lives. Occupational therapy practitioners (OTPs) and physicians who specialize in treating infants with BPBI recommend caregivers to perform PROM at every diaper change, which is every 1-3 hours in the first months of life, and every 4-6 hours by age one. A survey study by one of the investigators on this proposed project found that 85% of OTPs who specialize in BPBI make this recommendation for performing PROM at every diaper change; however, there is no research to support this frequency to prevent or decrease contractures. Clinical observations suggest that infants who receive consistent daily PROM seem to avoid development of shoulder contractures while those who receive no or infrequent PROM seem to develop early and significant contractures. In a retrospective pilot study we found that children whose parents consistently performed PROM two times daily starting before age two months were less likely to develop shoulder contractures than children whose parents were inconsistent in performing PROM. These findings, along with our clinical observations suggest that frequency of PROM might be less important than consistency. In order to assess the efficacy of different levels of frequency (e.g., at every diaper change vs. two times per day), it is imperative to identify methods that support caregivers in performing PROM every day. Therefore, the proposed study will pilot a caregiver training method which, if successful in facilitating daily adherence, will be used as part of a larger planned study that will compare differences in recommended frequencies of stretching.In a survey study and scoping literature review performed by one of the co-investigators on this project, caregiver adherence to home therapy recommendations was found to be facilitated by confidence in the training they received and by their confidence in ability to carry-out recommendations; lack of confidence in performing the home therapy recommendations was found to be a common barrier. Therefore, the objective of the proposed work is to assess the efficacy of a pilot training protocol for caregivers of infants with BPBI. Our central hypothesis is that the pilot training protocol will improve caregiver efficacy and increase their confidence in performing the recommended PROM/stretching procedure, thus facilitating adherence which we hope to later demonstrate will decrease the risk of shoulder contracture in infants with BPBI. The significance of this work is that it will evaluate and provide evidence for the use of the pilot training protocol so that this training protocol can later be used in a larger study on the efficacy of different frequencies of PROM to reduce the development of shoulder contracture in infants with BPBI, and thus contribute to developing evidenced-based standards of care for this population.The objectives of this clinical trial are to:1. determine whether caregivers who receive a pilot training protocol for performing PROM demonstrate improved efficacy in performing PROM compared to caregivers who receive standard training2. determine whether caregivers who receive a pilot training protocol for performing PROM demonstrate improved self-confidence in performing PROM compared to caregivers who receive standard training3. determine whether caregivers who receive a pilot training protocol for performing PROM report better daily adherence to daily PROM compared to caregivers who receive standard training

Research Team

ME

Matthew Elrick, MD, PhD

Principal Investigator

Hugo W. Moser Research Institute at Kennedy Krieger, Inc.

Eligibility Criteria

This trial is for caregivers aged 18 or older of infants under 6 months with a confirmed brachial plexus birth injury (BPBI), as determined by a specialized clinic team. The study aims to help these caregivers perform daily arm stretching exercises on their infants.

Inclusion Criteria

I am over 18 and care for an infant under 6 months with a confirmed brachial plexus injury.

Exclusion Criteria

I am caring for a baby over 6 months old with an upcoming brachial clinic appointment.
I am caring for an infant needing surgery for BPBI before 9 months old.
I care for an infant with a condition affecting their arm nerves, not due to birth injury.
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Timeline

Screening

Participants are screened for eligibility to participate in the trial

1-2 weeks
1 visit (in-person)

Training

Caregivers receive training in PROM techniques, including visual handouts, video recordings, and a step-by-step checklist for Group A

1 day
1 visit (in-person)

Follow-up

Caregivers are observed performing PROM and their efficacy and self-confidence are assessed

1-6 months
1 visit (in-person)

Long-term Monitoring

Participants are monitored for adherence to PROM and development of shoulder contractures

Up to 3 years

Treatment Details

Interventions

  • Pilot Training Protocol
Trial Overview The trial tests two training methods for caregivers: a new 'Pilot Training Protocol' and the existing 'Standard Training Protocol'. It will compare how well each method helps caregivers in performing passive range of motion exercises, improving their confidence, and adhering to daily routines.
Participant Groups
2Treatment groups
Experimental Treatment
Active Control
Group I: Group A - Pilot ProtocolExperimental Treatment1 Intervention
Participants in Group A will receive training in PROM techniques via a visual handout with pictures and written instructions and video recording using the caregiver's cell phone/tablet of the trainer and/or caregiver performing PROM on the infant. Participants in Group A will also receive supplemental training including a step-by-step checklist for each of the shoulder stretches that are recommended and will be instructed to refer to the checklist each time they perform PROM at home. Participants will be observed performing PROM at their initial visit where training occurs and at their infants' next follow-up visit. The standardized checklist will be used to assess efficacy of caregivers' demonstrated PROM including assessment of positioning, hand placement, and number of cues needed to facilitate accuracy; specific feedback will be given as needed.
Group II: Group B - Standard ProtocolActive Control1 Intervention
Participants in Group B will receive training in PROM techniques via the same visual handout with pictures and written instructions provided to Group A as well as video recording using the caregiver's cell phone/tablet of the trainer and/or caregiver performing PROM on the infant.

Find a Clinic Near You

Who Is Running the Clinical Trial?

Hugo W. Moser Research Institute at Kennedy Krieger, Inc.

Lead Sponsor

Trials
93
Recruited
25,200+

Towson University

Collaborator

Trials
10
Recruited
520+

Findings from Research

A systematic review of 138 studies on traumatic brachial plexus injury (TBPI) identified 1491 outcomes, revealing a significant focus on musculoskeletal impairments, with 86% of studies measuring these outcomes.
The review highlighted a lack of standardization in outcome reporting, with over two-thirds of outcomes reported incompletely, suggesting the need for a core outcome set to improve consistency and relevance in future TBPI research.
Developing a core outcome set for traumatic brachial plexus injuries: a systematic review of outcomes.Miller, C., Cross, J., O'Sullivan, J., et al.[2022]
Families with children suffering from brachial plexus injuries (BPIs) reported a significant overall family impact score of 43 out of 100, indicating substantial personal and financial strain.
The study, which included 102 caregivers, highlighted that the financial burden and the need for national travel for treatment were major contributors to the family's perceived impact, suggesting a need for multidisciplinary support to address these challenges.
The impact of pediatric brachial plexus injury on families.Louden, E., Allgier, A., Overton, M., et al.[2022]
Patients with traumatic brachial plexus injury (n=36) have similar levels of social support compared to healthy volunteers (n=43), indicating that emotional and social support may not differ significantly between these groups.
However, these patients tend to use a wider range of coping strategies, including some potentially harmful ones like self-blame and denial, which could negatively impact their recovery process.
Social Support and Coping Strategies in Patients with Traumatic Brachial Plexus Injury.Sachar, R., Landau, AJ., Ray, WZ., et al.[2022]

References

Developing a core outcome set for traumatic brachial plexus injuries: a systematic review of outcomes. [2022]
The impact of pediatric brachial plexus injury on families. [2022]
Social Support and Coping Strategies in Patients with Traumatic Brachial Plexus Injury. [2022]
Validity of the Thai version of Disability of the Arm, Shoulder and Hand Questionnaire (KKU-DASH) in patients with brachial plexus injury. [2022]
Preliminary Psychometric Evaluation of the Brachial Assessment Tool Part 2: Construct Validity and Responsiveness. [2019]
Team Approach: Management of Brachial Plexus Birth Injury. [2021]
Development and Assessment of a Patient "Journey Guide" for Adult Traumatic Brachial Plexus Injury. [2023]
Do existing patient-report activity outcome measures accurately reflect day-to-day arm use following adult traumatic brachial plexus injury? [2019]
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