Translating the Clinical Practice Guideline for Congenital Muscular Torticollis into Parent Education
Marian Stein, PT
Introduction:
Infants with congenital muscular torticollis (CMT) are frequently seen in clinical practice in typically developing infants and infants with atypical development. The association between CMT and plagiocephaly is complex and for that reason it is important for pediatric physical therapists to understand the development of both of these conditions and their relationship to each other in order to provide the best treatment options.
I began my research last semester searching for information pertaining to the use of shaping helmets with infants with plagiocephaly and torticollis. I did extensive research for my PICO question: In typically developing infants (2-6 months) diagnosed with CMT does PT intervention alone or PT intervention with shaping helmets achieve better neck alignment? (PICO summary)The results of my findings supported that when torticollis occurs in association with plagiocephaly, both conditions need to be treated.1 The earlier physical therapy and repositioning is started, the better the outcomes for both CMT and prevention of plagiocephaly.2-4 If plagiocephaly does not improve through positioning and physical therapy intervention, shaping helmets may be recommended around 5-6 months of age with treatment based on multidisciplinary management.3
During my research, I found the recently published article entitled “Physical Therapy Management of Congenital Muscular Torticollis: An Evidence-Based Clinical Practice Guideline”, written by Sandra Kaplan, PT, DPT, PhD; Colleen Coulter, PT, DPT, PhD, PCS; and Linda Fetters, PT, PhD, FAPTA.2 I contacted Dr. Coulter, one of the authors, at Children’s Healthcare of Atlanta, and asked if I could make a site visit to observe treatment of infants with torticollis and the evaluations and fitting of shaping helmets. I spent two days in Atlanta with Dr. Coulter observing treatment of infants with CMT and with Jessica Corso, orthotist, observing evaluations and fittings of shaping helmets. Following this visit, I decided to narrow my focus for my capstone project into incorporating the evidence supporting parent/caregiver education from the clinical practice guideline for CMT into a parent brochure. I find in my clinical practice that parents are often confused by information provided to them by the doctor and orthotists on treatment for CMT, plagiocephaly, and usage of shaping helmets. I did further research on sixteen articles highlighted in an evidence table specific to parent education.(Evidence table)
Product:
I felt that utilizing physical therapists to disseminate an informative brochure to parents would be the best choice. For this reason, I decided to focus my capstone presentation on reviewing the clinical practice guideline, as it relates to parent education, to a group of local therapists. My presentation, which was presented to 11 physical therapists and 3 physical therapy students, included a power point presentation entitled, “Translating the Clinical Practice Guideline for CMT into Parent Education”. (Power point presentation) Following the power point presentation, I explained the brochure, which incorporated the evidence from the guideline into parent friendly information. (Parent brochure) I offered this brochure as an adjunct to their clinical practice for educating parent/caregivers of infants with CMT. I was able to provide 1.5 contact hours for continuing education for this presentation. During my presentation, I provided the participants with a handout of the power point presentation, (Power point handout) course objectives, (Course objectives) references for the power point, (Reference power point), and an agenda of the presentation (Agenda).
I performed a health literacy assessment on my power point and brochure. I evaluated the materials in the parent brochure and my capstone power point presentation in the areas of cultural appropriateness, learning simulation, literacy demand, content, and layout.(Health literacy assessment)
Outcome
Following the presentation, I asked the participants to complete a course evaluation. (CourseEvaluation) This was my first power point presentation and even though I felt it was of concise, some of the feedback suggested that it included too many slides. I did make changes to it following input from my committee members and my faculty advisor. One of my questions on the evaluation form asked if the participants would be interested in a follow up discussion on this topic with more concentration on plagiocephaly and shaping helmets. Everyone was very interested and I am planning to bring this group together at a later date for a discussion with an orthotist in the area to discuss evaluation and fitting of shaping helmets.
In future presentations, I would like to incorporate more practical hands on application of the specific topic. In looking back on how I could have done this for this topic, I could have asked the participants to bring in dolls in order to practice handling, stretching, strengthening, and positioning techniques. I provided dinner for the participants and this gave the group a chance to meet each other before the presentation. My participants were therapists with extensive experience in treating infants with CMT. This prompted a great deal of discussion throughout the presentation, and this was my favorite part of the evening.
Thank you:
I want to thank my committee members, Colleen Coulter, PT, DPT, PhD, PCS and Kristin Sanders, PT, MPT, PCS for the long hours they spent in reviewing the components of the presentation and providing me with feedback. I also want to thank my faculty advisor Karen McCulloch, PT, PhD, NCS for her support and encouragement in the process. I also want to thank my husband, Jerry, who has been my “tech geek,” AV guy during my presentation, and my rock throughout this process.
References:
1. Freed S, Coulter-O’Berry C. Identification and Treatment of Congenital Muscular Torticollis Infants. Journal of Pediatrics and Orthotics. 2004;16(4):S18.
2. Kaplan S, Coulter C, Fetter L. Physical Therapy Management of Congenital Muscular Torticollis: An Evidence-Based Clinical Practice Guideline. Pediatr Phys Ther. 2013;25:348.
3. Flannery A, Looman W, Kemper K. Evidence-Based Care of the Child with Deformational Plagiocephaly, Part II Management. Journal of Pediatric Health Care. 2011;26(5):320.
4. vanVlimmeren L, van der Graff Y, Moere-Boonekamp M, L’Hoir M, Melders P, Engelberg R. Effects of Pediatric Physical Therapy on Deformational Plagiocephaly in Children with Positional Preference. Arch Pediatric Adolescent Medicine. 2008;162(8):712.
8 Responses to “Translating the Clinical Practice Practice Guideline for Congenital Muscular Torticollis into Parent Education”
Karen
Excellent work on this project, Marian. You did an excellent HL assessment – exactly the sorts of insights we hope for, as we talk and even think in terms that some parents may be unable to understand. I love your brochure – it is a nice illustration of how to use the info you have found in this capstone process for the benefit of your patients. It sounds like you have the beginnings of a pediatric interest group that may be able to continue to meet to discuss clinically relevant topics, if you do a follow up meeting about shaping helmets.
Great work, and congratulations!!!
kmac
Marian Stein
Debbie,
Thank you for the supportive comments. I expressed my positive experience in teaching with you in my portfolio, take a look.
Thanks again,
Marian
Debbie Thorpe
Hi Marian
Wonderful capstone project! Your parent brochure was well organized and precise, providing parents with great information. The slide presentation was informative for therapists. For future, you might develop one with a voice thread:) for parents and ask to link it to sites that treat these infants. That way parents have someplace to go to review materials. They are stressed and usually take in about 1/2 of what they hear from physicians and therapists!!
I really enjoyed your TA assistance in Adv Pt Management I this year. I hope we have an opportunity to collaborate in the future!
Congratulations and have a wonderful summer!
Debbie
Debra Gerber
Marian,
Thanks for elaborating! Your references and response again hit the mark!
Debra
Marian Stein
Hi Cathy,
Thanks for asking about the quality of the evidence used to develop the CPG’s for Physical Management of CMT. The guideline had a good general description of the levels of evidence and the grades of recommendations used for the action statements in the introduction. I do not know if you have read the guideline yet but most of the actions statements are based on Level I –II quality of evidence, except for a few. Action statement #1, “Identify newborns at risk for CMT” had the only level I evidence in the action statements. Action statement #4, “Screen infants”, was based on a combination of level II-IV evidence. Action statement #13, on supplemental interventions is level III evidence. The action statement #8, concerning “classifying the level of severity” is level V. The actions statements on discharge and follow up have level II-III evidence. Please review the guideline for more specific explanations of the types of studies used in each action statement.
In terms of over referral, I do not feel that physicians are over referring for helmets in our area. I feel that there is an education gap in the process of the evaluation, instructions given, parent/caregiver understanding and follow up. I am hoping to find a way to distribute the brochure I developed to the orthotists in our area.
I do not work closely with the orthotists. When I visited Colleen, it was a completely different atmosphere because of the large medical center approach. Also Colleen shared office space with the orthotists and they did a great deal of collaborating.
The therapists were very interested in discussing the CPG-CMT. Most of them were familiar with the guideline, but had not taken the time to read it, so they were happy to have someone (me) go over each of the action statements and discuss the evidence. Most of it did match the parent education piece of the intervention they were doing, but they were less familiar with the evidence.
As I noted, it was a very active and lively discussion. I think everyone attending enjoyed the time together to discuss this specific topic.
I hope I answered all your questions.
Marian
cathy Howes
Hi Marian, Congratulations on finishing your Capstone and developing such relevant products for therapists and parents. I’m also impressed that you went right to the sources of the CPG to get your information! Great work. My question, how do you feel about the quality of evidence used to develop the CPG? Do you feel that physicians in your area are over referring or under referring for helmets? How closely if at all do you work with an orthotist re: helmets? How did the experienced therapists receive the information you presented? Did it match intervention they were already providing? Thanks again for the interesting topic! Cathy
Marian Stein
Hi Debra,
In the article by Monson (2003),she recommends increasing prone tolerance by using infants mirrors and U shaped pillows, which is probably what we call “boppies”. We need to help parents understand the importance of this position early in development so that the intolerance does not develop by working with the parents on the positioning and handling activities (as noted in the brochure-Tummy Time Tools from Children’s Hospital of Atlanta-see reference list). Some parent may be reluctant because of the fear of SIDS, even when awake., which is highlighted in the article by Fradette (2011). It has also been debated that the intolerance for prone may occurs as a result of too much time positioning in supine or sitting or does the parent put the infant in supine or sitting because of the lack of head control and lack of tolerance? In the article by Fradette, she mentions that environmental factors , such as caregiver attitudes and practices play a role in follow through for parents. I feel it is part of our role to figure out which are the issues for the lack of prone positioning and work closely with the caregivers to understand. Thanks for your question. Let me know if I answered them.
Debra Gerber
Great work, Marian! I enjoyed your workshop and benefited greatly from the presentation, materials, and conversations! The brochure is a valuable resource to be able to provide for parents and caregivers, and I plan on using it. Thank you! I like your ideas about continued practice activities and for an additional session to learn more about the shaping helmets. For children with poor tolerance to positioning in prone, which is so important in the treatment for CMT, I’ve found that there can be many layers of problem solving that is needed to improve the child’s – and the caregivers – tolerance for prone. Dudek-Shriber’s recommendations of a minimum of 1 hour/day cumulative to help offset the effects of supine sleeping is a very helpful marker to discuss with parents. I had a infant with CMT that, once he started wearing a shaping helmet, had a significant decrease in his prone tolerance. His prone tolerance improved when we elevated him using a Tumbleforms wedge (entire body supported by the wedge, not having his arms off of the end) – it was easier for him to prop and raise his head and he could socialize better! He needed it for a few months for prone before he could tolerate flat prone wearing the helmet. Were there any strategies discussed in the literature you reviewed on how to work with the baby with CMT and plagiocephaly to improve their tolerance to prone? Thanks again for pulling together the evidence and clinical guidelines for CMT and presenting it to PTs in such a useful, interesting way!
Debra