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Falls Prevention in Adults with Intellectual and Developmental Disabilities

 

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Falls Prevention in Adults with Intellectual and Developmental Disabilities

otago group exercise tweety bird

Cathryn Ghena, SPT

 

Welcome! I am so very excited that you have decided to stop by my capstone page.  Let me give you a brief overview before I delve into my findings and application to practice.

 

Overview

Over the past year, I have immersed myself in research on falls prevention in adults with intellectual and developmental disabilities (IDD). What a journey it has been. There are >4.6 million adults in American living with IDD.1 Furthermore, these adults are three times more likely to suffer a fall as compared to their age-matched peers.2 As physical therapists, we are highly equipped to address this issue of falls; however, we must consider what approach to falls prevention is most effective in this unique population.

While I have learned a lot, there is certainly a severe need for more research on how to best limit falls in this population.  Fortunately, I have had the opportunity to dive right into the research, working with a team of therapists to develop a pilot study for a falls prevention program in a local group home for adults with IDD. The team consists of Katie Ollendick, PT, DPT, PCS; Melissa Scales, PT, DPT; Laura, Brown, PT, DPT; and Sarah Scow, PT, DPT as well as the awesome staff at Residential Services, Incorporated (RSI), a local non-profit organization who provides residential and support services for adults with IDD.

The foundational work for this project began last fall when RSI and the Carolina Institute for Developmental Disabilities (CIDD) realized an increased incidence of falls in their clients. The team then began to collect data about possible fall risk factors in these residents, which was compiled as a retrospective study and presented as a poster at the APTA Combined Sections Meeting (CSM) in Las Vegas, Nevada in February 2014. This information was then used to modify the Otago Exercise Program (OEP), a validated exercise program for reducing falls in the geriatric population. The modified OEP will be implemented at a single RSI group home as a pilot study starting in May 2014 and will continue for the next twelve months.

 

What does the literature say?

During the fall, I focused my research in the Evidence Based Practice (EBP) II course on factors that impact program development in adults with IDD. Specifically, I wanted to know the best type of exercise (balance vs. strength specific), setting (group vs. individual), and effect of staff support. While the research is rather limited both in quantity and quality, I was able to draw the following conclusions:

  1. Adults with IDD are at a significantly higher risk of falling compared to their age-matched peers
  2. Balance specific exercises are more effective in preventing falls than strengthening exercises alone
  3. Group training is associated with greater longitudinal outcomes
  4. Staff training is a vital component of falls prevention programs

For more information on these topics please refer to the following resources:

  • Literature Review—“Falls Prevention in Adults with Intellectual and Developmental Disabilities: Recommendations for a Falls Reduction Program”
  • Evidence Table—“A Brief Look at Falls Prevention in Adults with IDD”

 

Application to Practice

A majority of my time in PT school has been focused on reading the evidence and considering how we will one day put it into practice. This capstone has given me the opportunity to recognize the need for developing a falls prevention program for local adults with IDD and then follow through on this need. What an exciting experience!

The last few months have been full of emails, meetings, and phone calls as we have taken the Otago Exercise Program (OEP) and modified it for adults with IDD living in a group home residence. Modifications include how to most appropriately involve staff, adapt the outcome measures (i.e. using visual markers for the 4-Step Balance Test), and develop an exercise folder for each resident and their staff. Please refer to the CDC’s website for more information on the specific parameters of the Otago Exercise Program3.

The following are documents that have been compiled and/or developed for use in our pilot study:

 

More to Come!

Another lesson learned is this: developing a research study takes time and coordination! We recently received IRB approval, thus allowing us to continue with program development at RSI. The culmination of my research will be a staff training seminar. Please refer to the following document for a more in-depth overview of staff training.

Staff Training Outline

Staff training will occur mid-May, followed by client falls evaluations, development of individualized exercise programs (based on pre-selected exercises according to the OEP), and program implementation. We will then have the opportunity to present preliminary findings at the APTA’s Section on Pediatrics’ Annual Conference (SoPAC) in October 2014.

I intend to keep this site updated for the continuation of the pilot study, so be sure to keep stopping by if you’re interested in learning more!

UPDATE 5/18/14

I conducted a 2-hour staff training seminar on 5/14/14 at RSI. Information on falls incidences, consequences, and prevention strategies were well received by the staff. We then discussed the modified OEP, pilot study protocol, and residents’ exercise notebooks. Finally, we went through each exercise included in the modified OEP, having staff members try the exercises. We also discussed common deviations as well as suggestions for cueing residents. I created the following document,on exercise deviations to serve as a quick reference for staff members.

Reference Guide to Modified OEP Exercises

Resident initial evaluations and exercise programs are underway!

 

Special Thanks

This project would truly not have been possible without the members of the research team: Katie, Laura, Melissa, and Sarah. Thanks for letting me jump on board with this project in its beginning stages. You have each provided me with such wonderful guidance and feedback. I am excited to continue on this journey over the next year—I love that we get to be a part of making a change in how falls are addressed in adults with IDD. Thanks also to the staff at RSI for being so receptive and accommodating as we implement this program. Your staff support makes a world of a difference! Finally, thanks to each of you who have read this site—change cannot occur without education, so please use this information to better your patients.

Thanks again for stopping by!

References:

  1. Morstad D. How prevalent are intellectual and developmental disabilities in the united states? Bethesda Institute Web site. http://bethesdainstitute.org/document.doc?id=413. Published March 2012. Updated 2012. Accessed November 11, 2013.
  2. Kerse N, Peri K, Robinson E, et al. Does a functional activity programme improve function, quality of life, and falls for residents in long term care? cluster randomised controlled trial. BMJ. 2008;337:a1445. doi: 10.1136/bmj.a1445.
  3. Falls among older adults: An overview. Centers for Disease Control and Prevention Web site. http://www.cdc.gov/HomeandRecreationalSafety/Falls/adultfalls.html. Published 2013. Updated 2013. Accessed March 3, 2014.

 

10 Responses to “Falls Prevention in Adults with Intellectual and Developmental Disabilities”

  1. delane clark

    Cathryn,
    When I was in UNC’s HMSC program, I had what I considered a period of being able to experience a variety of research experiences (for a class, for a clinical trial with a pediatric physiatrist and for my thesis). Since that time, I’ve not found many opportunities, which may be related to where I’ve been geographically and just where I’ve been in stage of life. If you are actively searching, they do exist, though. I remember being surprised to find an employment opportunity for a research coordinator in a large orthopedic practice/hospital serving mainly adults (interesting but not my area of interest). When I worked in a rehab facility, a study was being conducted, but only staff OTs were involved. Though I would’ve jumped at the chance, I’m glad the OTs had the opportunity, and I think it was good for other clinicians in the department to see research happening so “close to home”. Even if you/we don’t choose the research path, I think it’s great to have had the experience. From my interactions with the eDPT students over the past two years, it seems that you guys have a good understanding of the process and know how critically appraise research, and you “get” the clinical implications. All very good stuff that will make you much more prepared than I was upon graduating from my entry-level program.
    All the best!
    Delane

    Reply

  2. Cathryn Ghena

    Hi Delane,

    You pose a very interesting question! I think that research is an extremely valuable component of physical therapy—an appreciation that has developed during my time at Carolina. However, I never anticipated being directly involved in research. So far, I have loved the experience. The critical thinking that comes with asking questions, developing a hypothesis, and implementing a program has been extremely beneficial.

    While I am excited to continue my participation in this project, I do not know that it is something I will specifically seek out during my career. With that being said, who knows where our careers will take us! I have worked with several therapists who have noticed a trend in their patients and have set out to determine the etiology of that trend—essentially conducting a mini-research session. Knowing that these opportunities will likely arise in my career, along with my current research experience, just may lead me to revisit the research path one day! We’ll see!

    Have you had any experience with research during your career? If so, how was that initiated and did you find it to be a beneficial experience?

    Thanks for stopping by my site Delane!
    Cathryn

    Reply

  3. Cathryn Ghena

    Hi Vicki,

    Thanks for your feedback! I too am very excited about using the Otago Program. I was able to participate in the online training, which was an extremely beneficial experience as I truly got to see all that this program has to offer. I also love the myriad of evidence supporting its use in older adults. With this being said, the training also talked a lot about fidelity or remaining consistent with Otago Protocol in order to produce decreased incidence of falls. While we have been intentional in remaining as true as possible to the original program, there is certainly an element of fidelity that is lost, as with any modified program. However, we have to start somewhere!!

    As for making the exercises fun, that is something we have (unfortunately) not incorporated. I completely agree with you that the Otago is a bit dull. Staff members will be educated on ways to ‘creatively’ implement exercises and residents will have the opportunity to perform exercises together; however, these aren’t the most exciting options. I would love to modify our study a bit more to include more group classes for additional motivation/enjoyment or other options for increased enjoyment. I suppose this would fall under “ideas for further research.” While I am optimistic that our study will serve as a strong foundation in falls prevention for adults with IDD, I hope that we will see continued research in this population, especially as we have identified such a dire need for intervention.

    As for your questions related to individualized vs. group exercise, I am going to refer you to my response to Chenin. Please let me know if you have further questions related to this topic though!

    Thanks for your support,
    Cathryn

    Reply

  4. Cathryn Ghena

    Hi Debra!

    You raise some wonderful questions! When I began my review of the evidence last fall, one of my initial focuses was risk factors for falls in adults with IDD. While I was doing this review, the rest of my team was retrospectively reviewing resident’s health history for these potential falls risk factors. We came to similar conclusions, finding that the following factors were associated to increased falls: a primary motor diagnosis (i.e. CP or Down Syndrome), decreased strength and/or balance, unsteady gait, lower extremity malalignments, polypharmacy, seizure disorder, visual impairment, decreased cognitive ability, inappropriate or agitated behavior, psychological disorder, and dementia. While these factors likely contributed to falls, the actual causes were largely secondary to loss of balance, unsteady gait, seizures, low blood pressure, being pushed, wet floor, tripping, agitation, etc.1

    Clearly, there are a lot of factors and causes that need to be considered. A part of me wants to share all of this information in hopes of preventing every type of fall; however, we also have to present the information in a way that it can be retained and then utilized by the staff. While education on seizures certainly has a role, we have chosen to focus on factors that can be more directly impacted by physical therapy i.e. strengthening, balance, gait, and environmental modifications. I read an interesting review by Petridou et al. that found exercise-alone interventions were more effective in preventing falls in community-dwelling older adults than multifactorial programs.2 While this wasn’t taken into consideration in choosing the Otago Exercise Program, I think that it supports the idea that focusing on specific falls factors may be a more appropriate approach.

    With all this being said, we also should not be completely ignore factors that are not directly impacted by therapy i.e. epilepsy. As therapists, we should be screening for these risk factors, referring to other disciplines, and providing education as appropriate. Perhaps a series of seminars on these risk factors directed at the staff may be an effective approach….ideas for the future.

    Hope all is well Debra and thanks for your questions. I’ll be sure to keep you updated.
    Cathryn

    References:
    1. Ollendick, K.; Wilfley, L.; Noonan, C.; Scales, M; Scow, S.; Brown, L. Identification of Incidence, Risk Factors, and Causes of Falls in Individuals with Intellectual and Developmental Disabilities. Division of Physical Therapy and Carolina Institute for Developmental Disabilities, University of North Carolina-Chapel Hill. Poster Presentation at: Combined Sections Meeting of the American Physical Therapy Association; February 4, 2014; Las Vegas, Nevada.
    2. Petridou, Eleni Th, et al. “What works better for community-dwelling older people at risk to fall? A meta-analysis of multifactorial versus physical exercise-alone interventions.” Journal of aging and health 21.5 (2009): 713-729.

    Reply

  5. Cathryn Ghena

    Chenin,
    Thanks your feedback. Your words, as always, are full of encouragement and insight. I actually had a similar experience when I worked in a group home between undergrad and grad school (one of the reasons I wanted to pursue opportunity). My review of the evidence showed that there is clearly a need for a falls prevention program in this population; unfortunately, there is not yet a best protocol. Let me try to address each of your questions:

    • Individual vs group: When reviewing articles, I also expected to find that programs individualized for the resident based not only on their physical needs, but also on their personal interests and motivating factors would be the most effective. Unfortunately, there was limited evidence to support this idea. In fact, I was most surprise when reading a 2008 study by Kerse et al. which found that individualized exercise programs were more effective in typically developing adults than their cognitively impaired peers. The authors suggest that adults with IDD likely require even more specialized programming than their peers to hold attention and maintain motivation. What this increased specialization entails, however, is unclear. Perhaps the programs need to be more simplistic or even more engaging. More research on this topic is needed (our job!). Interestingly, I found a lot of research to support group training classes like a Greek dance class (imagine this population participating in dance together—hand holding to encourage increased safety and community, rhythm, footwork, etc.). While we initially hoped to have a group training component, and this will still be an option, our bigger emphasis will be on staff training.
    • Staff Participation: Because of the difficulties in motivating this population, we will be largely reliant on the staff. Several studies suggested that investing in the staff would result in greater gains in fall prevention. Staff should never be underestimated (or underappreciated!). By us investing in the staff, we hope to see increased residential participation. Essentially, we plan to use education on the drastic effects of falls and the simplicity of preventing them to encourage staff to buy in to the program. I would encourage you to look at an article by Bonner et al. as it had a great system for staff education, which happened to be run by students! While our program isn’t recreating this system, it is certainly something to consider for future use.

    Hope I was able to answer some of your questions! Thanks again for your interest. Hope you’re rocking your clinical!
    Much love,
    Cathryn

    Reply

  6. Cathryn Ghena

    Hi everyone!
    Thanks for your comments thus far. I am just reacclimating to life in NC after having an amazing experience in Guatemala! I am going to respond to all of you individually in the next day or so, so check back in soon for a response. Hope everyone is doing well!
    -Cathryn

    Reply

  7. delane clark

    Cathryn,
    What an interesting project. I think it’s great that you took on research. You will certainly come out of this program with a well-rounded perspective of the options available to us as physical therapists. From what you described, I understand that you will be involved with this study until you all present in October, but I’m curious, afterwards and career-wise, do you have any desire to pursue a research path?
    Delane

    Reply

  8. Vicki Mercer

    Excellent job on your capstone, Cathryn! I have had some experience with the Otago program through the Community Health and Mobility Partnership (CHAMP) project, and I think it is a great idea to try to use Otago exercises with the IDD population. I was not aware of the high incidence of fall-related injuries in this population. I have some of the same questions for you that Chenin did with regard to individualized exercises versus group exercise classes and how to motivate individuals to perform these exercises. Unfortunately, the Otago exercises seem to me to be fairly routine – not very exciting; so how will you make these exercises fun for the participants? I, too, will be interested in hearing how things go! Vicki

    Reply

  9. Debra Gerber

    Hi Cathryn,
    What a meaningful capstone project! Having spent many years in my career working with individuals with developmental and intellectual disabilities and their caregivers, I am so impressed with what you are doing and how you are going about it!
    In my consultation work with group homes, we would review incident reports (including falls) as part of the assessment process. Seizure disorders and anti-convulsant medications (often resulting in polypharmacy) were often factors that not only led to falls but to more serious injuries from falling. Given that seizure disorders are more prevalent in the IDD population, how do you think this plays into their higher fall risk? Did the articles you reviewed discuss this in any detail? Will this be incorporated into the staff training for falls prevention?
    So many individuals are going to benefit from your project – from the clients to the staff! You’re making such a difference! Please keep me posted on how it goes!
    Debra

    Reply

  10. Chenin Duclos

    Dear Cathryn,
    How exciting and fun to be involved in this project! And yes quite a need here. I have heard lots about the Otago Exercise Program for older adults, but you’re right what programs are available for this population? Honestly, I never even thought about the prevalence of falls in adults with intellectual and developmental disabilities (DD). Once this program is adapted to use with individuals with intellectual and DD, I think it seems very feasible to use from a time availability perspective. I was a residential care aid for a couple years in Washington for individuals with DD and mental illness. They had 24 hour care in their home and often lived with roommates; I spent 10 hours a day with my two ladies . Thinking back on my experience with these women, we surely had enough time in the day tighter to do balance and strength exercise – or components of a falls prevention program. I’m not sure the numbers on how many people with DD have aids or extra time given by caregivers. I’m sure of course it depends on severity, but seems like getting staff on board (as you have expressed) is first and foremost, but doable and hopefully they have the time to implement – I know I did. Heck, I was often bored out of my mind trying to find activities for us! I will say though, when I think about my two ladies, I’m not sure I could get them to exercise even if the time there. And I am wondering what you guys have put in place to deal with that issue. Did I read that you will have individualized plans for each residnets? Or will it all be similar? Group format? The women I worked with were very um… we’ll say uninterested in doing a whole lot except watching TV. I tried all kinds of ideas – on a good day I could get one to go grocery shopping or play disc golf. I guess what I’m getting at is – I’ll be curious to see your approach/staff recommendations for participation. Staff are going to need to be creative I’m sure. Explaining the benefits and why Otago is important may not be effective for folks with intellectual disabilities. I think it takes getting to know each individual well, their interests, hobbies etc, and adapting Otago just for them – weave it into something that makes them happy and feel good !
    I hope you are having a blast in G-mala! Chenin
    Great job here dear!

    Reply

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