C A S E
R E P O R T
Balance Outcomes Following a Tap Dance Program for a Child With Congenital Myotonic Muscular Dystrophy Charlanne Biricocchi, PT, DPT; JaimeLynn Drake, PT, DPT, MBA, CEIM; Lana Svien, PT, PhD, MA Department of Physical Therapy, University of South Dakota, Vermillion, South Dakota.
Purpose: This case report describes the effects of a 6-week progressive tap dance program on static and dynamic balance for a child with type 1 congenital myotonic muscular dystrophy (congenital MMD1). Summary of Key Points: A 6-year-old girl with congenital MMD1 participated in a 1-hour progressive tap dance program. Classes were held once a week for 6 consecutive weeks and included 3 children with adaptive needs and 1 peer with typical development. The Bruininks-Oseretsky Test of Motor Proficiency, second edition (BOT-2) balance subsection and the Pediatric Balance Scale were completed at the beginning of the first class and the sixth class. The participant’s BOT-2 score improved from 3 to 14. Her Pediatric Balance Scale score did not change. Conclusion: Participation in a progressive tap dance class by a child with congenital MMD1 may facilitate improvements in static and dynamic balance. (Pediatr Phys Ther 2014;26:360–365) Key words: child, congenital myotonic muscular dystrophy, dance therapy, female, postural balance Type 1 myotonic muscular dystrophy (MMD1),1 the most common type of the myotonic muscular dystrophies (MMDs), is also referred to as Steinert disease or myotonic dystrophy.2,3 It is an autosomal dominant disorder that is differentiated by an expanded region of a gene on chromosome 19.1,2 The expansion is passed from parent to child, increasing in size with each generation, and is responsible for the increase in severity of the disorder and associated features between generations. Symptoms may appear from childhood to adulthood and may demonstrate a slow progression, allowing individuals to remain rea-
0898-5669/110/2603-0360 Pediatric Physical Therapy C 2014 Wolters Kluwer Health | Lippincott Williams & Copyright Wilkins and Section on Pediatrics of the American Physical Therapy Association
Correspondence: Charlanne Biricocchi, PT, DPT, c/o Lana Svien, PT, PhD, MA, Department of Physical Therapy, University of South Dakota, 414 East Clark, Vermillion, SD 57069. ([email protected]). At the time this article was written, Charlanne Biricocchi and JaimeLynn Drake were students in the tDPT program, Department of Physical Therapy, School of Health Sciences, the University of South Dakota, Vermillion, South Dakota. The authors declare no conflicts of interest. DOI: 10.1097/PEP.0000000000000064
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sonably ambulatory and independent.1,4 Because of the inheritance pattern, congenital myotonic dystrophy (congenital MMD1) is classified as the most severe form of MMD1.1,2 For adult and congenital MMD1, the disorder is characterized by involvement of muscles, several organs, and systems with variable severity.1-3 The symptoms include myotonia—a delayed relaxation of a contracted muscle—generalized muscle weakness, and muscle wasting that affects the face, neck, forearms, hands, and lower legs.1,2,4 Involvement of the axial and distal musculature, along with decreased 2-joint muscle extensibility, is reported to contribute to the motor component of balance difficulties.5 Balance can also be affected by varying degrees of decreased visual acuity, cognition, sensory-motor neuropathy, and severe fatigue associated with MMD1.3,5 Previous studies have addressed the difficulties with balance faced by adults with MMD1 and the positive effect of programs addressing these difficulties.3,5 Wiles et al3 conducted a prospective study that found a 10-fold increase in falls and stumbles in adults with MMD1 when compared with individuals who are healthy.3 An additional prospective study demonstrated significant improvement in balance, muscle strength, and gait following a short-term rehabilitation program for adults with MMD1.5 Although research has documented balance, strength, and gait deficits of adults with MMD1 and possible Pediatric Physical Therapy
Copyright © 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins and the Section on Pediatrics of the American Physical Therapy Association. Unauthorized reproduction of this article is prohibited.
intervention approaches, no published studies were found to address possible deficits in children with MMD1.3,5 Given the potential benefits reported for adults with MMD1, children with MMD1 may also benefit from intervention programs addressing balance and motor control. It has been reported that dance may improve the skills of balance and coordination with the possibility of enhancing strength, flexibility, and cardiovascular endurance.6-9 Dance has also been found to be an enjoyable and uplifting activity with a valuable social component.10 According to the American Dance Therapy Association,11 dance is effective for individuals of all ages and is practiced in numerous settings.10,11 A therapist can use any style of dance as an assessment and an intervention by focusing on motor control and learning the movements.10 If a therapist is unable to offer dance as a clinical intervention, collaborations between skilled pediatric therapists and community instructors have been proven effective for increasing participation of children with disabilities in community dance classes.12-14 Dance has resulted in improvement in balance for adults and pediatric populations with mild to moderate motor control impairments.6-11,15-17 Tsimaras et al7 reported a significant improvement in dynamic balance measurements for individuals with mental retardation after a traditional Greek-dance training program. Argentine tango, American smooth bronze waltz, and foxtrot dance classes have led to significant improvements in balance for individuals with Parkinson disease.8,9 A significant difference in postural sway measurements for individuals with a traumatic brain injury followed a dance training program.15 Boswell16,17 investigated the use of dance therapy for children with mental retardation in 2 different studies. When examining a creative dance program integrated with 3 sequences of movements, which are considered important for successful balance, a significant difference (P < .01) in balance skills was noted when compared to a traditional motor program.17 The lack of published studies on congenital MMD1 makes intervention studies for this population imperative. Improvements in balance, strength, and gait of children with congenital MMD1 could have positive effects on social, functional, and athletic abilities. The purposes of this retrospective case report were (1) to describe the effects of a 6-week progressive tap dance program on static and dynamic balance for a child with congenital MMD1 and (2) to report the benefits of participation in a dance program.
CASE DESCRIPTION The child was recruited by verbal invitation to participate in a summer-time adaptive tap dance class and was selected for this case report because of her ability to follow instructions, her ability to complete the evaluations, and her desire to learn dance. She was 6 years old with a diagnosis of congenital MMD1, receiving physical therapy services through her local school district. Pediatric Physical Therapy
Born at 36 weeks gestation, she remained in the hospital for 8 weeks while awaiting foster care placement. During her hospital stay, a G-tube was placed for feeding, but at the time of the dance intervention she was eating orally. The child began receiving early intervention services upon discharge from the hospital, including physical and occupational therapies on a weekly basis and special education every other week. At the age of 3 years, she transitioned to the preschool program provided through her local public school. While in preschool, she received weekly physical therapy, occupational therapy, speech therapy, and special education services. Upon entering the first grade, services were continued with the addition of a weekly adaptive physical education class. Her history is positive for bilateral club feet, requiring surgical intervention at the age of 12 months. She has worn various ankle foot orthoses in the past; however, at the time of the study, she did not use any orthotic or assistive devices. Parents reported that the child had difficulty keeping up with peers at play because of slow cadence, inability to run, decreased endurance, and decreased balance skills. She also had difficulty with daily living skills such as toileting and dressing. Medications during the intervention period were cyclobenzaprine (Flexeril) and polyethylene glycol 3350 (Miralax). CLINICAL IMPRESSION The child did not have any activity restrictions that prohibited her from participating in a tap dance class, and participated with the permission of her parents. The child presented with decreased muscle tone throughout her trunk, extremities, neck, and face as evidenced by overall slumped posture and open position of her mouth. She demonstrated decreased endurance as evidenced by the inability to ambulate greater than 75 feet or to sit unsupported on the floor for more than 45 seconds without a rest break or support. The child presented with decreased balance skills as evidenced by difficulty transferring between surfaces, achieving single limb balance, and intermittent falls during ambulation. Generalized muscle weakness was noted during functional skills assessment of transfers, squatting, jumping, walking, and stair skills. The child had a positive Gower’s sign when she moved from floor sitting to standing. She completed 5 sit-to-stand trials from a chair, needing bilateral upper extremity assist for 3 of the 5 trials. When the child was asked to complete a squat, she locked her knees and bent at her waist. Jumping involved a slight bend of the knees with a bounce; she was not able to clear the surface without assistance. The child ambulated independently without an assistive device but with a wide base of support, decreased speed, bilateral in-toeing (right is greater than left), and decreased clearance bilaterally during swing phase. Stair skills involved marking time (both feet on each step) when both ascending and descending, and she required assistance of bilateral handrails. She also turned her body, using trunk rotation and Tap Dance Program for Child With MMD1 361
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circumduction for clearance during both ambulation and when ascending stairs. On the basis of this clinical impression, it was decided to obtain baseline measurements of her motor control skills necessary for maintaining posture during functional activities and to test her functional balance skills to determine her safety with independent mobility.
ASSESSMENTS
(MID) values for the BOT-2 balance subtest on 100 children between the ages of 4 and 12 years. The MDC value of 1.14 indicates the amount of change needed between balance subtest scores to reflect a statistically reliable change. The MID value of 0.57 depicts the smallest change between 2 balance subtest scores that is needed to establish a clinically significant difference. Pediatric Balance Scale
This study and the consent statement were approved by the Institutional Review Board of the University of South Dakota. Informed consent was obtained from the participant and her parents. One blinded assessor, familiar with the outcome measures, performed pre- and posttesting at the beginning of the first class and again at the beginning of the sixth class. The 2 tests used were the Bruininks-Oseretsky Test of Motor Proficiency, second edition (BOT-2) balance subsection and the Pediatric Balance Scale (PBS).
Bruininks-Oseretsky Test of Motor Proficiency, Second Edition The BOT-2 is the most widely used standardized measure of motor proficiency.18 The BOT-2 has also been shown to be a reliable and valid measure of motor skill ability that is suitable to many different research designs. According to the manual, the BOT-2 allows for the administration of only those subtests or composites found relevant to a child’s individual needs. As the focus of this case report was balance skills only, the balance section of the BOT-2 was used as part of this report. The balance subtest of the BOT-2 evaluates motor control skills that are necessary for maintaining posture when standing, walking, or performing other common activities. The tasks in the balance subtest measure the following 3 areas affecting balance: trunk stability, stasis and movement, and the use of visual cues. Wuang and Su19 estimated the minimum detectable change (MDC) and the minimum important difference
The PBS is a modified version of the Berg Balance Scale. The PBS consists of 14 items intended to test functional skills relevant to everyday tasks, which are scored on a 5-point ordinal scale with a maximum point score of 56.20,21 A higher score indicates better balance performance.20 A study by Franjoine et al21 established reliability of the PBS on 20 children between the ages of 5 and 15 years with mild to moderate impairments. Test-retest reliability of the PBS was extremely high with an intraclass correlation coefficient of 0.998. Interrater reliability was also found to be high with an intraclass correlation coefficient of 0.997. As this case study focused on a pediatric client, the PBS was used as the functional measure. A sideby-side comparison of the BOT-2 and the PBS test items is shown in Table 1. INTERVENTION The dance class intervention occurred during the summer between kindergarten and first-grade. She was receiving summer school services for academics, speech, and 30 minutes per week of occupational and physical therapies. Physical therapy sessions consisted of activities to increase access to her educational environment and prevent a regression in skills during her summer break. Activities included training to move from sit to stand and stand to sit, and from floor to stand and stand to floor, stepping on and off curbs, stair skill training, mild intensity strengthening, gait training, coordination, and balance skills. A home program had been developed and taught to the family, and they reported moderate compliance with this program.
TABLE 1 Comparison of Bruininks-Oseretsky Test of Motor Proficiency, Second Edition Balance Subsection and Pediatric Balance Scale18 BOT-2 Balance Subsection Items 1 2 3 4 5 6 7 8 9
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Standing with feet apart on a line—eyes open Walking forward on a line Standing on 1 leg on a line—eyes open Standing with feet apart on a line—eyes closed Walking forward heel to toe on a line Standing on 1 leg on a line—eyes closed Standing on 1 leg on a balance beam—eyes open Standing heel to toe on a balance beam Standing on 1 leg on a balance beam—eyes closed
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Pediatric Balance Scale Items 1 2 3 4 5 6 7 8 9 10 11 12 13 14
Sitting to standing Standing to sitting Transfers Standing unsupported Sitting unsupported Standing with eyes closed Standing with feet together Standing with 1 foot in front Standing on 1 foot Turning 360◦ Turning to look behind Retrieving object from floor Placing alternate foot on stool Reaching forward with outstretched arm
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The adaptive tap dance intervention was a class with 4 girls between 5 and 6 years of age, 3 with adaptive needs and 1 peer model with typical development. Participants were recruited by verbal invitation from 1 of the researchers who was instructing a summer-time adaptive tap dance class. The class included participants who demonstrated a desire to participate in tap dance. The instructor had 12 years of experience as a pediatric physical therapist and 15 years of dance experience. Classes were held once a week for 6 consecutive weeks and followed the same format. Each class began with a 5to 10-minute warm-up period of stretching exercises on the floor and bar work. Following warm-up, each student was brought to a colored spot on the floor and basic tap steps were taught. A total of 10 dance steps were taught, progressing to the next step when the previous step was mastered. The 10 dance steps are listed in Table 2. After 20 minutes of instruction a break for a fun activity occurred for 5 to 10 minutes, which included freeze dance, jumping skills, Simon Says, or free dance time. Following the fun activity, the dance steps learned that day were put into combinations of 2 or 3 steps, and the students attempted to complete the combinations. Class ended with a bow.
OUTCOMES The BOT-2 data, taken to assess motor control skills for maintaining posture when standing, walking, or performing other common activities, showed an improvement from the initial testing to the testing that occurred at the beginning of the sixth class (Table 3). The BOT-2 test items of (1) walking forward on a line and (2) walking forward heel to toe on a line showed the greatest improvements. She moved from a scaled score of 2 at the beginning of class 1 to scaled score of 4 at the beginning of class 6 (Table 4). On the basis of comparisons with the MDC and the MID determined by Wuang and Su,19 the mean change in her scaled scores for the balance subtests indicates, respectively, both TABLE 2 Tap Steps and Descriptions Step Stomp Stamp Step Brush Shuffle Flap Ball change
Cramp roll Hop Leap
Description Whole foot flat on the floor without a weight shift Whole foot flat on the floor with a weight shift Foot down flat, shift weight, lift unweighted foot Ball of foot moves forward only Ball of foot brushed forward then backward in quick succession Brush and step on the same foot Weight is shifted back onto ball of foot placed behind the other; front foot is quickly lifted up and down Toe, toe, heel, heel-–up, up, down, down Jump up on 1 leg and land on the same leg Jump off on 1 leg and land on the other
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TABLE 3 Bruininks-Oseretsky Test of Motor Proficiency, Second Edition Balance Subtest Point Scores Test Item Standing with feet apart on a line—eyes open Walking forward on a line Standing on 1 leg on a line—eyes open Standing with feet apart on a line—eyes closed Walking forward heel to toe on a line Standing on 1 leg on a line—eyes closed Standing on 1 leg on a balance beam—eyes open Standing heel to toe on a balance beam Standing on 1 leg on a balance beam—eyes closed Total score
Pretest
Posttest
3
4a
0 0
4a 1a
0
1a
0
4a
0
0
0
0
0
0
0
0
3
14a
a Improvement.
a statistically and clinically significant difference in her motor control skills related to postural control and balance. The child demonstrated a slight improvement standing on 1 leg with eyes open; this is the sole test item measured in both balance tests. During posttesting, she was able to obtain and maintain single leg balance without assist for 1 second, resulting in an increase in her score for the BOT2, but no change in the PBS score. The PBS items’ scores remained constant from initial to posttesting (Table 5). Steps requiring single limb balance and use of only the ball of her foot were more challenging for the child. For example, during the brush, shuffle, and flap, the child would quickly put her foot down to regain balance. She performed better with activities such as the stomp in which her whole foot is raised and lowered quickly. During the first 3 weeks of the class, accommodations were made: she was allowed to hold the ballet bar, use a chair to hold for balance assist, or hold the hand of the dance instructor. After 3 weeks, she gained more confidence and was making more attempts to complete these activities without accommodations. The hop and leap remained difficult, and she did not master TABLE 4 BOT-2 Balance Subtest Scaled Scores Scaled Scores, Mean = 15 (SD = 5) Mean Change Balance Subtest Scaled Scores (Week 6-Week 1)
MDC
MID
Pretest score 2
1.14
0.57
Posttest score 4
2a,b
Abbreviations: MDC, minimum detectable change; MID, minimum important difference. a Mean change score exceeds MDC. b Mean change score exceeds MID.
Tap Dance Program for Child With MMD1 363
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TABLE 5 Pediatric Balance Scale Data Test Item Sitting to standing Standing to sitting Transfers Standing unsupported Sitting unsupported Standing with eyes closed Standing with feet together Standing with 1 foot in front Standing on 1 foot Turning 360◦ Turning to look behind Retrieving object from floor Placing alternate foot on stool Reaching forward with outstretched arm Total score
Pretest
Posttest
4 4 4 3 4 2 0 1 1 2 2 4 0
4 4 4 3 4 2 0 1 1 2 2 4 0
3
3
34
34
these during the 6-week class. She was able to combine up to 3 steps (eg, stomp, stomp, and flap) at the end of the class when given verbal cues as to what was next. The child was able to verbalize how to complete the steps at the end of the 6-week session, demonstrating understanding of how to complete each step. Her difficulty was with the motor portion of the steps, not with cognition. DISCUSSION The child received an average of 40 minutes of tap dance instruction each week. She attended each class and participated fully. Her family reported additional practice time at home each week. The tap dance program included dance steps that required brief periods of sustained balance on 1 leg while moving the opposite foot. Although for 3 of 5 sessions the child used modifications for these steps, she eventually was performing independently. The time practicing these steps may have led to improvements in the child’s BOT-2 balance score. The improvement may also reflect the cointervention of weekly physical therapy sessions the child was receiving during the time of the study. The child showed no improvement in her PBS scores. The functional movements that comprise the test were not specifically practiced during the tap dance classes. It is likely that the child was not able to carry over improvements in balance to the functional skills measured by the PBS. It is also possible that the child achieved maximum functional skill levels as measured by the PBS. Participation in a dance program that included 4 other peers encouraged the development of social skills. The child showed an improvement in social interactions with program participants from the initial class to the last class, as noted by the dance instructor and parents. The child was observed standing in the back closer to her mother during the initial 3 sessions. By the end of week 6, her mother was able to stand off the dance floor and observe with the other 364
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parents. The child was also observed initiating interaction through conversation with the other class participants. The child also verbally requested continued participation in a dance program. Although this case report provides important information for clinicians, there are some limitations. First, this is a case report of a single patient, which limits the generalizability of the findings to the larger population of children with congenital MMD1. Second, the short intervention period of 6 weeks may not have been sufficient time to allow for maximum improvements in balance and functional skills. Finally, improvement in balance skills may be attributable to concurrent interventions such as weekly physical therapy, rather than to the dance program alone. Further research should include larger sample sizes and assessment of the long-term effectiveness of dance intervention for children with congenital MMD1. These studies should include the use of randomized trials to compare dance intervention with the more traditional therapeutic interventions for balance and strength deficits in children. CONCLUSIONS In this case, participation in a 6-week progressive tap dance class by a child with congenital MMD1 might have led to improvements in static and dynamic balance for motor control skills for maintaining posture when standing, walking, or performing other common activities. The desire to learn dance might have increased the child’s participation and compliance with an activity that can improve balance, strength, and gait deficits characteristic for individuals with MMD1.3,5 Given the potential benefits of a progressive tap dance program, long-term continuation of this enjoyable therapeutic intervention may improve overall daily functional abilities for individuals with MMD1 while providing valuable social interactions.10 ACKNOWLEDGMENTS The authors thank Anne Lapin, MCSP, PT, for assistance with standardized test administration, Justin Beebe, PT, PhD, and Ryan Torgrude, PT, DPT, OCS, for providing review, and Dance Dynamics II for the generous loan of studio space. REFERENCES 1. Muscular Dystrophy Association. Myotonic muscular dystrophy (MMD, Steinert disease, dystrophia myotonica). http://mda.org/ disease/myotonic-muscular-dystrophy/types/mmd1. Accessed June 30, 2012. 2. Romeo V. Myotonic dystrophy type 1 or Steinert’s disease. Adv Exp Med Biol. 2012;724:239-257. 3. Wiles CM, Busse ME, Sampson CM, Rogers MT, Fenton-May J, van Deursen R. Falls and stumbles in myotonic dystrophy. J Neurol Neurosurg Psychiatry. 2006;77(3):393-396. 4. Nationwide Children’s. Muscular dystrophy. Nationwide Children’s Hospital. http://www.nationwidechildrens.org/musculardystrophy#congenital-muscular-dystrophy. Accessed September 8, 2012. Pediatric Physical Therapy
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5. Missaoui B, Rakotovao E, Bendaya S, et al. Posture and gait abilities in patients with myotonic dystrophy (Steinert disease). Evaluation on the short-term of a rehabilitation program. Ann Phy Rehabil Med. 2010;53(6/7):387-398. 6. Earhart GM. Dance as therapy for individuals with Parkinson disease. Eur J Phys Rehabil Med. 2009;45(2):231-238. 7. Tsimaras VK, Giamouridou GA, Kokaridas DG, Sidiropoulou MP, Patsiaouras AI. The effect of a traditional dance training program on dynamic balance of individuals with mental retardation. J Strength Cond Res. 2012;26(1):192-198. 8. Hackney ME, Kantorovich S, Levin R, Earhart GM. Effects of tango on functional mobility in Parkinson’s disease: a preliminary study. J Neurol Phys Ther. 2007;31(4):173-179. 9. Hackney ME, Earhart GM. Effects of dance on movement control in Parkinson’s disease: a comparison of Argentine tango and American ballroom. J Rehabil Med. 2009;41(6):475481. 10. Strassel JK, Cherkin DC, Steuten L, Sherman KJ, Vrijhoef HJ. A systematic review of the evidence for the effectiveness of dance therapy. Altern Ther Health Med. 2011;17(3): 50-59. 11. American Dance Therapy Association. About dance/movement therapy. http://www.adta.org/default.aspx?pageID=378213. Accessed May 20, 2012. 12. Hunter KGJ, Piner SK, Rosenberg AE. Pediatric physical therapists’ consultation with a community dance instructor: a case report. Pediatr Phys Ther. 2004;16:222-229.
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13. Becker E, Dusing S. Participation is possible: a case report of integration into a community performing arts program. Physiother Theory Pract. 2010;26(4):275-280. 14. O’Neil ME, Fragala-Pinkham M, Ideishi RI, Ideishi SK. Communitybased programs for children and youth: our experiences in design, implementation and evaluation. Phys Occup Ther Pediatr. 2012;32(2):111-119. 15. Dault MC, Dugas C. Evaluation of a specific balance and coordination programme for individuals with a traumatic brain injury. Brain Inj. 2002;16(3):231-244. 16. Boswell B. Comparison of two methods of improving dynamic balance of mentally retarded children. Percept Mot Skills. 1991;73:759-764. 17. Boswell B. Effects of movement sequences and creative dance on balance of children with mental retardation. Percept Mot Skills. 1993;77:1290. 18. Bruininks RH, Bruininks BD. BOT2: Bruininks-Oseretsky Test of Motor Proficiency. 2nd ed. Circle Pines, MN: AGS Publishing; 2005. 19. Wuang YP, Su CY. Reliability and responsiveness of the BruininksOseretsky Test of Motor Proficiency-Second Edition in children with intellectual disability. Res Dev Disabil. 2009;30(5):847-855. 20. Gan SM, Tung LC, Tang YH, Wang CH. Psychometric properties of functional balance assessment in children with cerebral palsy. Neurorehabil Neural Repair. 2008;22(6):745-753. 21. Franjoine MR, Gunther JS, Taylor MJ. Pediatric Balance Scale: a modified version of the Berg Balance Scale for the school-age child with mild to moderate motor impairment. Pediatr Phys Ther. 2003;15: 114-128.
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R E P O R T
Balance Outcomes Following a Tap Dance Program for a Child With Congenital Myotonic Muscular Dystrophy Charlanne Biricocchi, PT, DPT; JaimeLynn Drake, PT, DPT, MBA, CEIM; Lana Svien, PT, PhD, MA Department of Physical Therapy, University of South Dakota, Vermillion, South Dakota.
Purpose: This case report describes the effects of a 6-week progressive tap dance program on static and dynamic balance for a child with type 1 congenital myotonic muscular dystrophy (congenital MMD1). Summary of Key Points: A 6-year-old girl with congenital MMD1 participated in a 1-hour progressive tap dance program. Classes were held once a week for 6 consecutive weeks and included 3 children with adaptive needs and 1 peer with typical development. The Bruininks-Oseretsky Test of Motor Proficiency, second edition (BOT-2) balance subsection and the Pediatric Balance Scale were completed at the beginning of the first class and the sixth class. The participant’s BOT-2 score improved from 3 to 14. Her Pediatric Balance Scale score did not change. Conclusion: Participation in a progressive tap dance class by a child with congenital MMD1 may facilitate improvements in static and dynamic balance. (Pediatr Phys Ther 2014;26:360–365) Key words: child, congenital myotonic muscular dystrophy, dance therapy, female, postural balance Type 1 myotonic muscular dystrophy (MMD1),1 the most common type of the myotonic muscular dystrophies (MMDs), is also referred to as Steinert disease or myotonic dystrophy.2,3 It is an autosomal dominant disorder that is differentiated by an expanded region of a gene on chromosome 19.1,2 The expansion is passed from parent to child, increasing in size with each generation, and is responsible for the increase in severity of the disorder and associated features between generations. Symptoms may appear from childhood to adulthood and may demonstrate a slow progression, allowing individuals to remain rea-
0898-5669/110/2603-0360 Pediatric Physical Therapy C 2014 Wolters Kluwer Health | Lippincott Williams & Copyright Wilkins and Section on Pediatrics of the American Physical Therapy Association
Correspondence: Charlanne Biricocchi, PT, DPT, c/o Lana Svien, PT, PhD, MA, Department of Physical Therapy, University of South Dakota, 414 East Clark, Vermillion, SD 57069. ([email protected]). At the time this article was written, Charlanne Biricocchi and JaimeLynn Drake were students in the tDPT program, Department of Physical Therapy, School of Health Sciences, the University of South Dakota, Vermillion, South Dakota. The authors declare no conflicts of interest. DOI: 10.1097/PEP.0000000000000064
360
Biricocchi et al
sonably ambulatory and independent.1,4 Because of the inheritance pattern, congenital myotonic dystrophy (congenital MMD1) is classified as the most severe form of MMD1.1,2 For adult and congenital MMD1, the disorder is characterized by involvement of muscles, several organs, and systems with variable severity.1-3 The symptoms include myotonia—a delayed relaxation of a contracted muscle—generalized muscle weakness, and muscle wasting that affects the face, neck, forearms, hands, and lower legs.1,2,4 Involvement of the axial and distal musculature, along with decreased 2-joint muscle extensibility, is reported to contribute to the motor component of balance difficulties.5 Balance can also be affected by varying degrees of decreased visual acuity, cognition, sensory-motor neuropathy, and severe fatigue associated with MMD1.3,5 Previous studies have addressed the difficulties with balance faced by adults with MMD1 and the positive effect of programs addressing these difficulties.3,5 Wiles et al3 conducted a prospective study that found a 10-fold increase in falls and stumbles in adults with MMD1 when compared with individuals who are healthy.3 An additional prospective study demonstrated significant improvement in balance, muscle strength, and gait following a short-term rehabilitation program for adults with MMD1.5 Although research has documented balance, strength, and gait deficits of adults with MMD1 and possible Pediatric Physical Therapy
Copyright © 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins and the Section on Pediatrics of the American Physical Therapy Association. Unauthorized reproduction of this article is prohibited.
intervention approaches, no published studies were found to address possible deficits in children with MMD1.3,5 Given the potential benefits reported for adults with MMD1, children with MMD1 may also benefit from intervention programs addressing balance and motor control. It has been reported that dance may improve the skills of balance and coordination with the possibility of enhancing strength, flexibility, and cardiovascular endurance.6-9 Dance has also been found to be an enjoyable and uplifting activity with a valuable social component.10 According to the American Dance Therapy Association,11 dance is effective for individuals of all ages and is practiced in numerous settings.10,11 A therapist can use any style of dance as an assessment and an intervention by focusing on motor control and learning the movements.10 If a therapist is unable to offer dance as a clinical intervention, collaborations between skilled pediatric therapists and community instructors have been proven effective for increasing participation of children with disabilities in community dance classes.12-14 Dance has resulted in improvement in balance for adults and pediatric populations with mild to moderate motor control impairments.6-11,15-17 Tsimaras et al7 reported a significant improvement in dynamic balance measurements for individuals with mental retardation after a traditional Greek-dance training program. Argentine tango, American smooth bronze waltz, and foxtrot dance classes have led to significant improvements in balance for individuals with Parkinson disease.8,9 A significant difference in postural sway measurements for individuals with a traumatic brain injury followed a dance training program.15 Boswell16,17 investigated the use of dance therapy for children with mental retardation in 2 different studies. When examining a creative dance program integrated with 3 sequences of movements, which are considered important for successful balance, a significant difference (P < .01) in balance skills was noted when compared to a traditional motor program.17 The lack of published studies on congenital MMD1 makes intervention studies for this population imperative. Improvements in balance, strength, and gait of children with congenital MMD1 could have positive effects on social, functional, and athletic abilities. The purposes of this retrospective case report were (1) to describe the effects of a 6-week progressive tap dance program on static and dynamic balance for a child with congenital MMD1 and (2) to report the benefits of participation in a dance program.
CASE DESCRIPTION The child was recruited by verbal invitation to participate in a summer-time adaptive tap dance class and was selected for this case report because of her ability to follow instructions, her ability to complete the evaluations, and her desire to learn dance. She was 6 years old with a diagnosis of congenital MMD1, receiving physical therapy services through her local school district. Pediatric Physical Therapy
Born at 36 weeks gestation, she remained in the hospital for 8 weeks while awaiting foster care placement. During her hospital stay, a G-tube was placed for feeding, but at the time of the dance intervention she was eating orally. The child began receiving early intervention services upon discharge from the hospital, including physical and occupational therapies on a weekly basis and special education every other week. At the age of 3 years, she transitioned to the preschool program provided through her local public school. While in preschool, she received weekly physical therapy, occupational therapy, speech therapy, and special education services. Upon entering the first grade, services were continued with the addition of a weekly adaptive physical education class. Her history is positive for bilateral club feet, requiring surgical intervention at the age of 12 months. She has worn various ankle foot orthoses in the past; however, at the time of the study, she did not use any orthotic or assistive devices. Parents reported that the child had difficulty keeping up with peers at play because of slow cadence, inability to run, decreased endurance, and decreased balance skills. She also had difficulty with daily living skills such as toileting and dressing. Medications during the intervention period were cyclobenzaprine (Flexeril) and polyethylene glycol 3350 (Miralax). CLINICAL IMPRESSION The child did not have any activity restrictions that prohibited her from participating in a tap dance class, and participated with the permission of her parents. The child presented with decreased muscle tone throughout her trunk, extremities, neck, and face as evidenced by overall slumped posture and open position of her mouth. She demonstrated decreased endurance as evidenced by the inability to ambulate greater than 75 feet or to sit unsupported on the floor for more than 45 seconds without a rest break or support. The child presented with decreased balance skills as evidenced by difficulty transferring between surfaces, achieving single limb balance, and intermittent falls during ambulation. Generalized muscle weakness was noted during functional skills assessment of transfers, squatting, jumping, walking, and stair skills. The child had a positive Gower’s sign when she moved from floor sitting to standing. She completed 5 sit-to-stand trials from a chair, needing bilateral upper extremity assist for 3 of the 5 trials. When the child was asked to complete a squat, she locked her knees and bent at her waist. Jumping involved a slight bend of the knees with a bounce; she was not able to clear the surface without assistance. The child ambulated independently without an assistive device but with a wide base of support, decreased speed, bilateral in-toeing (right is greater than left), and decreased clearance bilaterally during swing phase. Stair skills involved marking time (both feet on each step) when both ascending and descending, and she required assistance of bilateral handrails. She also turned her body, using trunk rotation and Tap Dance Program for Child With MMD1 361
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circumduction for clearance during both ambulation and when ascending stairs. On the basis of this clinical impression, it was decided to obtain baseline measurements of her motor control skills necessary for maintaining posture during functional activities and to test her functional balance skills to determine her safety with independent mobility.
ASSESSMENTS
(MID) values for the BOT-2 balance subtest on 100 children between the ages of 4 and 12 years. The MDC value of 1.14 indicates the amount of change needed between balance subtest scores to reflect a statistically reliable change. The MID value of 0.57 depicts the smallest change between 2 balance subtest scores that is needed to establish a clinically significant difference. Pediatric Balance Scale
This study and the consent statement were approved by the Institutional Review Board of the University of South Dakota. Informed consent was obtained from the participant and her parents. One blinded assessor, familiar with the outcome measures, performed pre- and posttesting at the beginning of the first class and again at the beginning of the sixth class. The 2 tests used were the Bruininks-Oseretsky Test of Motor Proficiency, second edition (BOT-2) balance subsection and the Pediatric Balance Scale (PBS).
Bruininks-Oseretsky Test of Motor Proficiency, Second Edition The BOT-2 is the most widely used standardized measure of motor proficiency.18 The BOT-2 has also been shown to be a reliable and valid measure of motor skill ability that is suitable to many different research designs. According to the manual, the BOT-2 allows for the administration of only those subtests or composites found relevant to a child’s individual needs. As the focus of this case report was balance skills only, the balance section of the BOT-2 was used as part of this report. The balance subtest of the BOT-2 evaluates motor control skills that are necessary for maintaining posture when standing, walking, or performing other common activities. The tasks in the balance subtest measure the following 3 areas affecting balance: trunk stability, stasis and movement, and the use of visual cues. Wuang and Su19 estimated the minimum detectable change (MDC) and the minimum important difference
The PBS is a modified version of the Berg Balance Scale. The PBS consists of 14 items intended to test functional skills relevant to everyday tasks, which are scored on a 5-point ordinal scale with a maximum point score of 56.20,21 A higher score indicates better balance performance.20 A study by Franjoine et al21 established reliability of the PBS on 20 children between the ages of 5 and 15 years with mild to moderate impairments. Test-retest reliability of the PBS was extremely high with an intraclass correlation coefficient of 0.998. Interrater reliability was also found to be high with an intraclass correlation coefficient of 0.997. As this case study focused on a pediatric client, the PBS was used as the functional measure. A sideby-side comparison of the BOT-2 and the PBS test items is shown in Table 1. INTERVENTION The dance class intervention occurred during the summer between kindergarten and first-grade. She was receiving summer school services for academics, speech, and 30 minutes per week of occupational and physical therapies. Physical therapy sessions consisted of activities to increase access to her educational environment and prevent a regression in skills during her summer break. Activities included training to move from sit to stand and stand to sit, and from floor to stand and stand to floor, stepping on and off curbs, stair skill training, mild intensity strengthening, gait training, coordination, and balance skills. A home program had been developed and taught to the family, and they reported moderate compliance with this program.
TABLE 1 Comparison of Bruininks-Oseretsky Test of Motor Proficiency, Second Edition Balance Subsection and Pediatric Balance Scale18 BOT-2 Balance Subsection Items 1 2 3 4 5 6 7 8 9
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Standing with feet apart on a line—eyes open Walking forward on a line Standing on 1 leg on a line—eyes open Standing with feet apart on a line—eyes closed Walking forward heel to toe on a line Standing on 1 leg on a line—eyes closed Standing on 1 leg on a balance beam—eyes open Standing heel to toe on a balance beam Standing on 1 leg on a balance beam—eyes closed
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Pediatric Balance Scale Items 1 2 3 4 5 6 7 8 9 10 11 12 13 14
Sitting to standing Standing to sitting Transfers Standing unsupported Sitting unsupported Standing with eyes closed Standing with feet together Standing with 1 foot in front Standing on 1 foot Turning 360◦ Turning to look behind Retrieving object from floor Placing alternate foot on stool Reaching forward with outstretched arm
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The adaptive tap dance intervention was a class with 4 girls between 5 and 6 years of age, 3 with adaptive needs and 1 peer model with typical development. Participants were recruited by verbal invitation from 1 of the researchers who was instructing a summer-time adaptive tap dance class. The class included participants who demonstrated a desire to participate in tap dance. The instructor had 12 years of experience as a pediatric physical therapist and 15 years of dance experience. Classes were held once a week for 6 consecutive weeks and followed the same format. Each class began with a 5to 10-minute warm-up period of stretching exercises on the floor and bar work. Following warm-up, each student was brought to a colored spot on the floor and basic tap steps were taught. A total of 10 dance steps were taught, progressing to the next step when the previous step was mastered. The 10 dance steps are listed in Table 2. After 20 minutes of instruction a break for a fun activity occurred for 5 to 10 minutes, which included freeze dance, jumping skills, Simon Says, or free dance time. Following the fun activity, the dance steps learned that day were put into combinations of 2 or 3 steps, and the students attempted to complete the combinations. Class ended with a bow.
OUTCOMES The BOT-2 data, taken to assess motor control skills for maintaining posture when standing, walking, or performing other common activities, showed an improvement from the initial testing to the testing that occurred at the beginning of the sixth class (Table 3). The BOT-2 test items of (1) walking forward on a line and (2) walking forward heel to toe on a line showed the greatest improvements. She moved from a scaled score of 2 at the beginning of class 1 to scaled score of 4 at the beginning of class 6 (Table 4). On the basis of comparisons with the MDC and the MID determined by Wuang and Su,19 the mean change in her scaled scores for the balance subtests indicates, respectively, both TABLE 2 Tap Steps and Descriptions Step Stomp Stamp Step Brush Shuffle Flap Ball change
Cramp roll Hop Leap
Description Whole foot flat on the floor without a weight shift Whole foot flat on the floor with a weight shift Foot down flat, shift weight, lift unweighted foot Ball of foot moves forward only Ball of foot brushed forward then backward in quick succession Brush and step on the same foot Weight is shifted back onto ball of foot placed behind the other; front foot is quickly lifted up and down Toe, toe, heel, heel-–up, up, down, down Jump up on 1 leg and land on the same leg Jump off on 1 leg and land on the other
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TABLE 3 Bruininks-Oseretsky Test of Motor Proficiency, Second Edition Balance Subtest Point Scores Test Item Standing with feet apart on a line—eyes open Walking forward on a line Standing on 1 leg on a line—eyes open Standing with feet apart on a line—eyes closed Walking forward heel to toe on a line Standing on 1 leg on a line—eyes closed Standing on 1 leg on a balance beam—eyes open Standing heel to toe on a balance beam Standing on 1 leg on a balance beam—eyes closed Total score
Pretest
Posttest
3
4a
0 0
4a 1a
0
1a
0
4a
0
0
0
0
0
0
0
0
3
14a
a Improvement.
a statistically and clinically significant difference in her motor control skills related to postural control and balance. The child demonstrated a slight improvement standing on 1 leg with eyes open; this is the sole test item measured in both balance tests. During posttesting, she was able to obtain and maintain single leg balance without assist for 1 second, resulting in an increase in her score for the BOT2, but no change in the PBS score. The PBS items’ scores remained constant from initial to posttesting (Table 5). Steps requiring single limb balance and use of only the ball of her foot were more challenging for the child. For example, during the brush, shuffle, and flap, the child would quickly put her foot down to regain balance. She performed better with activities such as the stomp in which her whole foot is raised and lowered quickly. During the first 3 weeks of the class, accommodations were made: she was allowed to hold the ballet bar, use a chair to hold for balance assist, or hold the hand of the dance instructor. After 3 weeks, she gained more confidence and was making more attempts to complete these activities without accommodations. The hop and leap remained difficult, and she did not master TABLE 4 BOT-2 Balance Subtest Scaled Scores Scaled Scores, Mean = 15 (SD = 5) Mean Change Balance Subtest Scaled Scores (Week 6-Week 1)
MDC
MID
Pretest score 2
1.14
0.57
Posttest score 4
2a,b
Abbreviations: MDC, minimum detectable change; MID, minimum important difference. a Mean change score exceeds MDC. b Mean change score exceeds MID.
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TABLE 5 Pediatric Balance Scale Data Test Item Sitting to standing Standing to sitting Transfers Standing unsupported Sitting unsupported Standing with eyes closed Standing with feet together Standing with 1 foot in front Standing on 1 foot Turning 360◦ Turning to look behind Retrieving object from floor Placing alternate foot on stool Reaching forward with outstretched arm Total score
Pretest
Posttest
4 4 4 3 4 2 0 1 1 2 2 4 0
4 4 4 3 4 2 0 1 1 2 2 4 0
3
3
34
34
these during the 6-week class. She was able to combine up to 3 steps (eg, stomp, stomp, and flap) at the end of the class when given verbal cues as to what was next. The child was able to verbalize how to complete the steps at the end of the 6-week session, demonstrating understanding of how to complete each step. Her difficulty was with the motor portion of the steps, not with cognition. DISCUSSION The child received an average of 40 minutes of tap dance instruction each week. She attended each class and participated fully. Her family reported additional practice time at home each week. The tap dance program included dance steps that required brief periods of sustained balance on 1 leg while moving the opposite foot. Although for 3 of 5 sessions the child used modifications for these steps, she eventually was performing independently. The time practicing these steps may have led to improvements in the child’s BOT-2 balance score. The improvement may also reflect the cointervention of weekly physical therapy sessions the child was receiving during the time of the study. The child showed no improvement in her PBS scores. The functional movements that comprise the test were not specifically practiced during the tap dance classes. It is likely that the child was not able to carry over improvements in balance to the functional skills measured by the PBS. It is also possible that the child achieved maximum functional skill levels as measured by the PBS. Participation in a dance program that included 4 other peers encouraged the development of social skills. The child showed an improvement in social interactions with program participants from the initial class to the last class, as noted by the dance instructor and parents. The child was observed standing in the back closer to her mother during the initial 3 sessions. By the end of week 6, her mother was able to stand off the dance floor and observe with the other 364
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parents. The child was also observed initiating interaction through conversation with the other class participants. The child also verbally requested continued participation in a dance program. Although this case report provides important information for clinicians, there are some limitations. First, this is a case report of a single patient, which limits the generalizability of the findings to the larger population of children with congenital MMD1. Second, the short intervention period of 6 weeks may not have been sufficient time to allow for maximum improvements in balance and functional skills. Finally, improvement in balance skills may be attributable to concurrent interventions such as weekly physical therapy, rather than to the dance program alone. Further research should include larger sample sizes and assessment of the long-term effectiveness of dance intervention for children with congenital MMD1. These studies should include the use of randomized trials to compare dance intervention with the more traditional therapeutic interventions for balance and strength deficits in children. CONCLUSIONS In this case, participation in a 6-week progressive tap dance class by a child with congenital MMD1 might have led to improvements in static and dynamic balance for motor control skills for maintaining posture when standing, walking, or performing other common activities. The desire to learn dance might have increased the child’s participation and compliance with an activity that can improve balance, strength, and gait deficits characteristic for individuals with MMD1.3,5 Given the potential benefits of a progressive tap dance program, long-term continuation of this enjoyable therapeutic intervention may improve overall daily functional abilities for individuals with MMD1 while providing valuable social interactions.10 ACKNOWLEDGMENTS The authors thank Anne Lapin, MCSP, PT, for assistance with standardized test administration, Justin Beebe, PT, PhD, and Ryan Torgrude, PT, DPT, OCS, for providing review, and Dance Dynamics II for the generous loan of studio space. REFERENCES 1. Muscular Dystrophy Association. Myotonic muscular dystrophy (MMD, Steinert disease, dystrophia myotonica). http://mda.org/ disease/myotonic-muscular-dystrophy/types/mmd1. Accessed June 30, 2012. 2. Romeo V. Myotonic dystrophy type 1 or Steinert’s disease. Adv Exp Med Biol. 2012;724:239-257. 3. Wiles CM, Busse ME, Sampson CM, Rogers MT, Fenton-May J, van Deursen R. Falls and stumbles in myotonic dystrophy. J Neurol Neurosurg Psychiatry. 2006;77(3):393-396. 4. Nationwide Children’s. Muscular dystrophy. Nationwide Children’s Hospital. http://www.nationwidechildrens.org/musculardystrophy#congenital-muscular-dystrophy. Accessed September 8, 2012. Pediatric Physical Therapy
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5. Missaoui B, Rakotovao E, Bendaya S, et al. Posture and gait abilities in patients with myotonic dystrophy (Steinert disease). Evaluation on the short-term of a rehabilitation program. Ann Phy Rehabil Med. 2010;53(6/7):387-398. 6. Earhart GM. Dance as therapy for individuals with Parkinson disease. Eur J Phys Rehabil Med. 2009;45(2):231-238. 7. Tsimaras VK, Giamouridou GA, Kokaridas DG, Sidiropoulou MP, Patsiaouras AI. The effect of a traditional dance training program on dynamic balance of individuals with mental retardation. J Strength Cond Res. 2012;26(1):192-198. 8. Hackney ME, Kantorovich S, Levin R, Earhart GM. Effects of tango on functional mobility in Parkinson’s disease: a preliminary study. J Neurol Phys Ther. 2007;31(4):173-179. 9. Hackney ME, Earhart GM. Effects of dance on movement control in Parkinson’s disease: a comparison of Argentine tango and American ballroom. J Rehabil Med. 2009;41(6):475481. 10. Strassel JK, Cherkin DC, Steuten L, Sherman KJ, Vrijhoef HJ. A systematic review of the evidence for the effectiveness of dance therapy. Altern Ther Health Med. 2011;17(3): 50-59. 11. American Dance Therapy Association. About dance/movement therapy. http://www.adta.org/default.aspx?pageID=378213. Accessed May 20, 2012. 12. Hunter KGJ, Piner SK, Rosenberg AE. Pediatric physical therapists’ consultation with a community dance instructor: a case report. Pediatr Phys Ther. 2004;16:222-229.
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13. Becker E, Dusing S. Participation is possible: a case report of integration into a community performing arts program. Physiother Theory Pract. 2010;26(4):275-280. 14. O’Neil ME, Fragala-Pinkham M, Ideishi RI, Ideishi SK. Communitybased programs for children and youth: our experiences in design, implementation and evaluation. Phys Occup Ther Pediatr. 2012;32(2):111-119. 15. Dault MC, Dugas C. Evaluation of a specific balance and coordination programme for individuals with a traumatic brain injury. Brain Inj. 2002;16(3):231-244. 16. Boswell B. Comparison of two methods of improving dynamic balance of mentally retarded children. Percept Mot Skills. 1991;73:759-764. 17. Boswell B. Effects of movement sequences and creative dance on balance of children with mental retardation. Percept Mot Skills. 1993;77:1290. 18. Bruininks RH, Bruininks BD. BOT2: Bruininks-Oseretsky Test of Motor Proficiency. 2nd ed. Circle Pines, MN: AGS Publishing; 2005. 19. Wuang YP, Su CY. Reliability and responsiveness of the BruininksOseretsky Test of Motor Proficiency-Second Edition in children with intellectual disability. Res Dev Disabil. 2009;30(5):847-855. 20. Gan SM, Tung LC, Tang YH, Wang CH. Psychometric properties of functional balance assessment in children with cerebral palsy. Neurorehabil Neural Repair. 2008;22(6):745-753. 21. Franjoine MR, Gunther JS, Taylor MJ. Pediatric Balance Scale: a modified version of the Berg Balance Scale for the school-age child with mild to moderate motor impairment. Pediatr Phys Ther. 2003;15: 114-128.
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