PedsQL Article Summary
Holst MVD, Steenbeek D, Pondaag W, Nelissen RG, Vlieland TPV. Neonatal brachial plexus palsy in children aged 0 to 2.5 years; parent-perceived family impact, quality of life, and upper extremity functioning. Pediatric Neurology.2016;62; 34-42.
Purpose
The purpose of this study was to investigate the impact of Neonatal Brachial Plexus Palsy (NBPP) on the family by gathering information regarding the parental QoL, perceived QoL of the NBPP child, and upper extremity function on children younger than 2.5 years of age. Perceived QoL, or how the parents of a child with NBPP perceive their child’s functioning, has never before been studied in this population, and was included to explore the full familial impact.
Population
This study focused infants and/or children between the ages of 0-2.5 years of age with a diagnosis of NBPP. 59 total patients participated in the study. The only exclusion criteria for this study includes individuals with a NBPP diagnosis whom also had other medical co-morbidities that may influence the functioning of the involved UE.
Methods
This study is cross-sectional in nature and was part of a larger study on participants of all ages with NBPP, which focused on the UE function and QoL of the patients. However, the analysis noted that this article focused on data collected on children between 0-2.5 years of age. All recruited participants were patients in an NBPP care unit at the Leiden University Medical Center. Chart reviews were conducted on the participants to collect information regarding general demographics (age, gender), as well as lesion extend, side affected, and history of treatment (conservative vs surgery). A regression analysis was used to denote associations between NBPP/patient characteristics and the impact on the family, the perceived QoL, and UE functioning.
Outcome Measures
The outcome measures used in this study includes the PedsQL Family Impact Module (FIM), TNO-AZL Preschool Children Quality of Life (TAPQOL), and questions on UE functioning. Each outcome used in this study was parent-reported. The PedsQL Family Impact Module measured how the child’s chronic condition impacted the family as a whole, observing subscales designed to examine how parental QoL, family functioning (including activities and relationships), parental worry, and communication were influenced by NBPP in a young child. The TAPQOL was utilized to look at the perceived physical, cognitive, social, and emotional quality of life of the child with NBPP. These scores were compared to the scores of healthy and age matches individuals, which were accessed through a public database. There is no existing questionnaire that is specific to the UE functioning of young NBPP patients. Therefore, questions were developed for this specific study to determine the parent’s observation of the involved UE’s appearance, difficulties with certain functional activities, and development of the young child and the affected UE. There is no current gold standard for this specific population, and reliability and validity of this measure could not be determined.
Interventions
Since this study was a cross-sectional design and not experimental, no interventions were performed for this study.
Results
It was found that those with a greater lesion extent, still in follow-up, less than 1 year of age, and having right affected side were associated with lower scores on most FIM subscales. If a child is still in follow-up, they may need additional treatments to reach full recovery. Although there were perceived differences in the stomach, communication, skin, and motor function problems in NBPP infants as compared to their healthy counterparts, there were no clinically relevant connections found in the TAPQOL for perceived QoL. The lesion extent, not being discharged from follow-up, and having a nerve surgery treatment history were associated with having greater UE functioning problems. Overall, parents generally perceive their child’s life as relatively normal, aside from noticing more problems with UE functioning. The perceived increase in UE functioning problems were linked to having greater parental worry.
Strengths
No previous study has looked into the parent’s perceived QoL of their child with NBPP, adding another layer to how this chronic condition could impact the family as a whole.
Limitations
Limitations of the study included finding consenting participants to contribute to a larger sample size, for of the 104 newborns from the care unit with NBPP, 57% of those patients participated in the study. The lack of a control group in this study inhibited the comparison of outcome measure results. For the family impact results, there were only FIM outcomes available from the US population. Differences in societies and health care systems makes this an incomparable generalization for the Dutch population. Finally, the design of this study was a cross-sectional design without opportunity for follow-up. Only self-reporting questionnaires were utilized in this study, allowing for the possibility of over or underestimation of results. At the time of questionnaire completion, unknown factors may have contributed to the results (mood and stress).
Overall Conclusion
Neonatal Brachial Plexus Palsy (NBPP) in children younger than 2.5 years of age was studied to determine the impact this chronic condition may have on their family. From the questionnaires, a wide variety of how parents perceived their families with a child with NBPP was found. It was also found that right side involvement and younger age were associated with greater family impact. However overall, parents viewed their child’s life as relatively normal as compared to other age-matched children, with the exception of decreased arm function on the affected side. This decreased arm function led to greater parental worry. From this study, it’s thought that earlier family education/counseling and interventions may be helpful to the QoL of the family as a whole with a child with NBPP.
3 responses to “PedsQL Article Summary”
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Very thorough review, Laura! I appreciate the impact of a quality of life measure; it’s interesting that despite the limitations a child may face due to NBPP, a parent may view their child’s life as relatively normal compared to age-matched children. I’m curious why the study determined 2.5 years of age to measure – quality of life may not be impacted at 2.5 years old but perhaps later in life they would see impairments.
Really interesting study! When the conclusion states that “right side involvement and younger age” were associated with greater family impact, did the authors go into greater detail about why these were impactful? I assume the right side affected is related to the greater number of right hand dominant individuals, but I find it counterintuitive that a younger child with a NBPP would be more impactful. Is this due to the increased likelihood of other comorbid conditions existing along with the palsy?
These are great questions, and you’re correct to assume that right side affectedness was more impactful for those reasons, as the article sites that it may be due to the general population being 90% right-hand dominant. As for younger children having a greater impact on family function and quality of life, the authors of this study contribute that finding to improved prognosis in still-growing child in the older kids. Aside from that, further detail was not provided. When reading this article, I believe that younger age could be more impactful on the family due to the acuteness of the palsy, whereas older children may have had more time/resources to cope and/or being rehabilitation of the UE. However, I don’t think you’re wrong in saying there could be greater comorbid conditions in the younger population.