RESPONSES- Orthotic care Muscular Dystrophy
Randall McFarland, CPO
Description
Collection
Title:
RESPONSES- Orthotic care Muscular Dystrophy
Creator:
Randall McFarland, CPO
Text:
First of all, I apologize for accidentally posting a response on a TK
question to the entire list. I meant it to go directly to one person.
ORIGINAL QUESTION:
I've been asked to speak at a support group for MD and would like input
from those of you with experience in this area.
It's my understanding that orthotic care is generally to protect the
muscles and stabilize the joints they cross. Some substitutions can occur
that can damage joints over time.
Question: What are the most common clinical problems you see with MD
children and adults and which of these are effectively treated with orthotic
care? What considerations do you make for this group when treating them?
RESPONSES: (separated by one line) Thanks to those who responded!
Dear Randy,
The muscular dystrophy population we are seeing in our area are
predominantly Duchennes in children and Charcot-Marie-Tooth in adults.
Orthotic goals are the same for both. That goal is to keep them ambulatory
and free of deformity as long as possible. With the kids AFO's are used.
Type chosen varies slightly from child to child. I have used hinged, solid
and floor reaction. I would never use a PLS or prefab on these kids.
Generally, with our patient population, when their legs need KAFO's their
upper bodies can't handle it and go to the chair.
CMT runs in families and since most people from this area stay here, we
have a large population of patients with CMT. Most of them can be traced to
a handful of families. In fact, last summer a patient related to counting 30
family members at their reunion who had CMT. 25 of those people were in
braces and 2 in wheel chairs. Most of our CMT patients do well with AFO's,
usually solid to start. Many progress to floor reaction. The patients in
KAFO's, for the most part, should have been braced earlier. Hope this is
helpful. These are observations about our practice. This varies regionally,
I am sure.
Teri Powers-Watts,CPO,CPed
<Email Address Redacted>
Control of the Foot/Ankle Complex: Orthotic
Recommendations by John Glancy is a book available on OandP.com and
addresses this topic.
Gord Ruder sent me the following search of the literature on the topic:
The effects of knee-ankle-foot orthoses in the treatment of Duchenne muscular
dystrophy: review of the literature.
Bakker JP, de Groot IJ, Beckerman H, de Jong BA, Lankhorst GJ.
Academic Medical Center, University of Amsterdam, Department of
Rehabilitation,
The Netherlands.
OBJECTIVE: A systematic review of the available literature on the
effectiveness
of knee-ankle-foot orthoses in the treatment of Duchenne muscular dystrophy.
RESULTS: Thirty articles describing 35 studies met the inclusion criteria for
our review, nine studies were selected
based on completeness of information on study population, treatment and
quantitative presentation of the effect outcome. Operations on the lower limbs
were performed on most patients. A concomitant programme of rehabilitation was
not described thoroughly. A percentage success of treatment was calculated for
eight studies. Median percentage after one year was 75.1, after two years 47.9
and after three years 24.3. The median for the means of independent walking
was
24 months, the median for the means of assisted walking was 36.2 months and
the
median for the means of standing ability was 50.5 months duration. CONCLUSION:
The scientific strength of the studies reviewed is poor. It seems that the use
of knee-ankle foot orthoses can prolong assisted walking and standing, but it
is
uncertain whether it can prolong functional walking. The boys that benefit
most
have a relatively low rate of deterioration, are capable of enduring an
operation and are well motivated.
Other studies' conclusions:
DESC A 30-month prospective randomised study of 27 Scandinavian
boys with confirmed Duchenne Muscular Dystrophy was
conducted to compare the effect of passive stretching
combined with the use of night splints (group A) or passive
stretching (group B) on the evolution of tendo Achilles
contractures. Results are reported and the expected annual
change in tendo Achilles contracture was found to be 23 per
cent less in group A than in group B after equalisation for
total muscle strength (per cent MRC).
TITL Contrasts in clinical presentation and genetic transition of
myotonic dystrophy.
DESC The effects of weakness and lower limb contractures found in
Duchenne muscular dystrophy (DMD) hinder postural
adaptations necessary for locomotion and result in
deformities. Orthotic aids to meet the demands of hip and
knee stability and maintain balance are reviewed. Orthoses
permit the patient to continue using natural mechanisms of
postural compensation.
TITL Evaluation of a program for long-term treatment of Duchenne
muscular dystrophy: experience at the University Hospitals
of Cleveland.
DESC Reports on 42 years experience in the management of 142 boys
with Duchenne Muscular Dystrophy (DMD) to evaluate the long-
term value of physiotherapy, operative treatment and bracing
for controlling contractures and prolonging the ability to
ambulate. Operative procedures combined with bracing and
physiotherapy, including daily stretching exercises and
prescribed periods of standing and walking were successful
for as long as 7 years' after treatment. This method of
management allowed boys with DMD to be able to walk until a
mean age of 13.6 years and to stand for an additional 2
years.
DESC A characteristic feature of Duchenne Muscular Dystrophy
(DMD) is an equinus gait. Management is inconsistent. Ten
subjects with DMD were fitted with fixed ankle foot orthoses
(AFOs) and the effects noted. Fixed AFOs compromised gait
and function as proximal weakness progressed. AFOs inhibit
mobility and function and should be confined to night wear
only to control secondary tendo-achilles contractures.
DESC Using measurements taken from a group of 30 boys with
Duchenne Muscular Dystrophy, a set of 5 standard thigh and 6
standard ankle foot orthoses were manufactured. Knee ankle
foot orthoses (KAFO) constructed from these modules were
compared with traditional KAFO's. In the study, which
involved 9 subjects, the supply time, costs, weight, energy
consumption and views of users were recorded for each of the
2 designs. Results indicated that the modular system permits
same day delivery of a lighter and cheaper device
DESC Describes the problem of bracing for walking in fifteen patients
who ceased to walk independently because of muscle weakness. The
patients were able to walk independently again after correction of
contractures and fitting of lower limb orthoses. Contrary to previous
opinion, enough residual muscle power exists for walking in orthoses
when muscle weakness prevents independent walking. The additional
energy requirements for walking with orthoses have not caused any
significant cardiovascular complications
DESC Controversy surrounds the treatment of Duchenne Muscular Dystrophy
in boys at the point at which they loose the ability to walk. This
is the time at which surgery and bracing must be performed if it is to
succeed. It is suggested that an appropriate wheelchair gives
much more practical independent mobility than bracing for
ambulation. The arguments for and against the treatments are discussed
DESC Reviewed the incidence and severity of scoliosis in 93 boys with Duchenne
Muscular Dystrophy rehabilitated in light weight knee ankle foot
orthoses at the point of loss of ambulation, aged 6-12 years. Found an
inverse relationship between the severity of the scoliosis and the age
walking was lost in the orthoses. Results suggest that walking in
orthoses beyond 13 years prevented rapid progression of scoliosis
question to the entire list. I meant it to go directly to one person.
ORIGINAL QUESTION:
I've been asked to speak at a support group for MD and would like input
from those of you with experience in this area.
It's my understanding that orthotic care is generally to protect the
muscles and stabilize the joints they cross. Some substitutions can occur
that can damage joints over time.
Question: What are the most common clinical problems you see with MD
children and adults and which of these are effectively treated with orthotic
care? What considerations do you make for this group when treating them?
RESPONSES: (separated by one line) Thanks to those who responded!
Dear Randy,
The muscular dystrophy population we are seeing in our area are
predominantly Duchennes in children and Charcot-Marie-Tooth in adults.
Orthotic goals are the same for both. That goal is to keep them ambulatory
and free of deformity as long as possible. With the kids AFO's are used.
Type chosen varies slightly from child to child. I have used hinged, solid
and floor reaction. I would never use a PLS or prefab on these kids.
Generally, with our patient population, when their legs need KAFO's their
upper bodies can't handle it and go to the chair.
CMT runs in families and since most people from this area stay here, we
have a large population of patients with CMT. Most of them can be traced to
a handful of families. In fact, last summer a patient related to counting 30
family members at their reunion who had CMT. 25 of those people were in
braces and 2 in wheel chairs. Most of our CMT patients do well with AFO's,
usually solid to start. Many progress to floor reaction. The patients in
KAFO's, for the most part, should have been braced earlier. Hope this is
helpful. These are observations about our practice. This varies regionally,
I am sure.
Teri Powers-Watts,CPO,CPed
<Email Address Redacted>
Control of the Foot/Ankle Complex: Orthotic
Recommendations by John Glancy is a book available on OandP.com and
addresses this topic.
Gord Ruder sent me the following search of the literature on the topic:
The effects of knee-ankle-foot orthoses in the treatment of Duchenne muscular
dystrophy: review of the literature.
Bakker JP, de Groot IJ, Beckerman H, de Jong BA, Lankhorst GJ.
Academic Medical Center, University of Amsterdam, Department of
Rehabilitation,
The Netherlands.
OBJECTIVE: A systematic review of the available literature on the
effectiveness
of knee-ankle-foot orthoses in the treatment of Duchenne muscular dystrophy.
RESULTS: Thirty articles describing 35 studies met the inclusion criteria for
our review, nine studies were selected
based on completeness of information on study population, treatment and
quantitative presentation of the effect outcome. Operations on the lower limbs
were performed on most patients. A concomitant programme of rehabilitation was
not described thoroughly. A percentage success of treatment was calculated for
eight studies. Median percentage after one year was 75.1, after two years 47.9
and after three years 24.3. The median for the means of independent walking
was
24 months, the median for the means of assisted walking was 36.2 months and
the
median for the means of standing ability was 50.5 months duration. CONCLUSION:
The scientific strength of the studies reviewed is poor. It seems that the use
of knee-ankle foot orthoses can prolong assisted walking and standing, but it
is
uncertain whether it can prolong functional walking. The boys that benefit
most
have a relatively low rate of deterioration, are capable of enduring an
operation and are well motivated.
Other studies' conclusions:
DESC A 30-month prospective randomised study of 27 Scandinavian
boys with confirmed Duchenne Muscular Dystrophy was
conducted to compare the effect of passive stretching
combined with the use of night splints (group A) or passive
stretching (group B) on the evolution of tendo Achilles
contractures. Results are reported and the expected annual
change in tendo Achilles contracture was found to be 23 per
cent less in group A than in group B after equalisation for
total muscle strength (per cent MRC).
TITL Contrasts in clinical presentation and genetic transition of
myotonic dystrophy.
DESC The effects of weakness and lower limb contractures found in
Duchenne muscular dystrophy (DMD) hinder postural
adaptations necessary for locomotion and result in
deformities. Orthotic aids to meet the demands of hip and
knee stability and maintain balance are reviewed. Orthoses
permit the patient to continue using natural mechanisms of
postural compensation.
TITL Evaluation of a program for long-term treatment of Duchenne
muscular dystrophy: experience at the University Hospitals
of Cleveland.
DESC Reports on 42 years experience in the management of 142 boys
with Duchenne Muscular Dystrophy (DMD) to evaluate the long-
term value of physiotherapy, operative treatment and bracing
for controlling contractures and prolonging the ability to
ambulate. Operative procedures combined with bracing and
physiotherapy, including daily stretching exercises and
prescribed periods of standing and walking were successful
for as long as 7 years' after treatment. This method of
management allowed boys with DMD to be able to walk until a
mean age of 13.6 years and to stand for an additional 2
years.
DESC A characteristic feature of Duchenne Muscular Dystrophy
(DMD) is an equinus gait. Management is inconsistent. Ten
subjects with DMD were fitted with fixed ankle foot orthoses
(AFOs) and the effects noted. Fixed AFOs compromised gait
and function as proximal weakness progressed. AFOs inhibit
mobility and function and should be confined to night wear
only to control secondary tendo-achilles contractures.
DESC Using measurements taken from a group of 30 boys with
Duchenne Muscular Dystrophy, a set of 5 standard thigh and 6
standard ankle foot orthoses were manufactured. Knee ankle
foot orthoses (KAFO) constructed from these modules were
compared with traditional KAFO's. In the study, which
involved 9 subjects, the supply time, costs, weight, energy
consumption and views of users were recorded for each of the
2 designs. Results indicated that the modular system permits
same day delivery of a lighter and cheaper device
DESC Describes the problem of bracing for walking in fifteen patients
who ceased to walk independently because of muscle weakness. The
patients were able to walk independently again after correction of
contractures and fitting of lower limb orthoses. Contrary to previous
opinion, enough residual muscle power exists for walking in orthoses
when muscle weakness prevents independent walking. The additional
energy requirements for walking with orthoses have not caused any
significant cardiovascular complications
DESC Controversy surrounds the treatment of Duchenne Muscular Dystrophy
in boys at the point at which they loose the ability to walk. This
is the time at which surgery and bracing must be performed if it is to
succeed. It is suggested that an appropriate wheelchair gives
much more practical independent mobility than bracing for
ambulation. The arguments for and against the treatments are discussed
DESC Reviewed the incidence and severity of scoliosis in 93 boys with Duchenne
Muscular Dystrophy rehabilitated in light weight knee ankle foot
orthoses at the point of loss of ambulation, aged 6-12 years. Found an
inverse relationship between the severity of the scoliosis and the age
walking was lost in the orthoses. Results suggest that walking in
orthoses beyond 13 years prevented rapid progression of scoliosis
Citation
Randall McFarland, CPO, “RESPONSES- Orthotic care Muscular Dystrophy,” Digital Resource Foundation for Orthotics and Prosthetics, accessed November 2, 2024, https://library.drfop.org/items/show/216982.
