Goswami, et
al. [1] published an open-label
randomized control trial to evaluate the
efficacy of adjunctive individualized home-centered activity-based therapy in children with
spastic diplegic cerebral palsy (CP) at ages 5-12
years [1]. Children in the intervention arm were
prescribed parent-supervised home-centered
activity-based therapy in addition to institutional
physiotherapy. Main outcome measures compared mean
changes in the 6-minute-walk test scores at 6 month
from baseline between the two groups. Adjunct
home-centered activity-based therapy was found to be
safe and feasible. However, no appreciable gains in
any of the primary (3.5 m vs 3 m) or secondary
outcomes variables were reported.The conceptual
design of the trial focused on addition of
interventional measures for the care of children
with CP, incorporating a family-based model, which
would be economically viable and feasible in
resource-limited settings. The authors recognized
the older ages of children selected for the study as
a confounding factor, given more limited adaptive
responses later during childhood, to the positive
effects of earlier developmental neuroplasticity.
A recent systematic review
specifically discussed the feasibility and
effectiveness of home-based physiotherapy programs
in children with cerebral palsy, and found large
variability in the study design, patient selection,
intervention characteristics, and outcome measures
[2]. Overall compliance to home-based training
program implementation was moderate to high, ranging
from 56-99% and an improvement in arm-hand
performance within group across time was
demonstrated [2]. Parent interviews highlight the
key role of parent/family coaching and partnership
with interdisciplinary care teams for continued
motivation and success of home-based rehabilitative
care [3].
The concept of ‘First 1000 days’
stresses the greater potential for positive adaptive
effects of developmental neuroplasticity to
interventions during critical/sensitive periods of
brain development [4]. This concept includes
timelier diagnoses for CP-risk children during
prenatal trimester-specific, neonatal and early
childhood time-periods [5]. Outcome studies of
therapeutic interventions for children with CP
require examinations of younger children before two
years of age. During this time-period,
rehabilitative care and therapies in a child’s home
can leverage the more positive adaptive effects of
consistent parental involvement. Establishing high
compliance by families to maintain their daily
environmental routines, with continued supervision
and training with a trained team of health
professionals empowers parents to develop a strong
partnership for long-standing success.
The COVID-19 pandemic reinforces
global social, economic, psychological, educational
and healthcare challenges for children with CP and
their families. These confounding factors are
specific to resource-rich or poor nations, including
‘medical deserts’ within countries where medical
care is potentially more available. Innovative
technologies such as improved telemedicine combined
with expanded outreach services across all
therapy-based developmental domains can potentially
improve opportunities for more effective
interventions. Ben-Pazi, et al. [6] emphasized more
timely and consistent digital healthcare
(telemedicine) for children with CP to encourage
high levels of participation, with families as
stakeholders motivated to the success of therapy
programs. Community-based telemedicine kiosks within
resource-poor communities would utilize publicly
owned computers, smartphones, or software provided
by this program for virtual initial and follow-up
consultations with multidisciplinary care teams.
Future feasibility studies would
assess strategies of video-monitoring of home-based
therapies with greater supervision and parental
training to achieve more positive results.
Feasibility studies require larger sample sizes with
younger age groups to assess the beneficial effects
of environmental interventions during the first 1000
days. India is the second largest user of mobile
phones worldwide, relying on this technology to
provide health information and supportive healthcare
in rural Indian regions [7]. Future studies that
incorporate digital health technology such as
telemedicine would expand the interventional tools
and access platforms needed to reduce neurologic
morbidities.
King, et al. [8] stressed the
conceptual framework of family-centered care for
service delivery as the best practice for early
intervention of pediatric rehabilitative care.
Family-centered service recognizes the unique nature
of family as the key factor for the continuity of
care to address a child’s abilities and needs [8].
Strengths and deficiencies of each child-family unit
are taken into consideration, to formulate the most
effective team, resource, therapy and community
support to optimize favorable outcome for a child
with CP. This experimental design concept was
presented by Goswami, et al. [1] as an important
contribution to guide the direction of future
research with a family-centered approach.
Outcomes research of
rehabilitative care for children with CP is
presently limited by the heterogeneity of selected
patient populations and study designs, and by
paucity of instruments and scales to accurately
measure potentially subtle but important functional
improvement. Given that the challenges of effective
rehabilitative care, community integration,
accessibility, resources and outcomes research vary
worldwide, countries with large and diverse
populations like India could conduct larger trials
with greater statistical power analyses. Integration
of digital technology platforms, home-based care
with a family-centered approach that serve children
with CP as well as other neurodevelopmental
disorders could be more critically investigated to
improve patient-centric and population-based care
practices. Global initiatives and partnerships need
to support all nations and regions with funding and
resources challenges. This will contribute to the
worldwide reduction in the burden from brain
disorders across the life span [4].
Contributors: SA: reviewed
the literature and the paper for the editorial,
prepared the manuscript, reviewed edits, and
finalized the final version; MS: reviewed the paper
and the editorial, edited, and critically reviewed
the final version; AT: reviewed the paper and the
editorial, edited, and critically reviewed the final
version.
Funding: None; Competing
interests: None stated.
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