Physical Therapist Provider Survey Regarding Physical Therapy Care for those with Spinal Muscular Atrophy (SMA)

IRB Study Number: Northwestern STU00208232

Investigators: Dr. Kristin Krosschell, Dr. Jessica Trenkle

Supported by: Department of Physical Therapy and Human Movement Sciences, Feinberg School of Medicine

Dear Prospective Participant,

You are invited to participate in an online research study survey investigating Physical Therapy services being administered to patients with Spinal Muscular Atrophy. Research studies involve only people who choose to participate. You are being asked to participate in this study because you are a pediatric physical therapist.

Key information about this research study:

The purpose of this study is to explore the use of various physical therapy assessments and interventions used in practice by physical therapists while treating those with spinal muscular atrophy. Your answers are important to us as they will help us better understand how physical therapy services are provided to those with SMA and what might be facilitators of or barriers to such. Your input will also help inform us of issues that may be relevant to improving education of providers treating these patients.

If you agree to participate in our study you will be asked to complete an on-line survey that should take 20 minutes to complete. This survey will ask a series of questions about your use of physical therapy assessments and interventions for those with SMA and what facilitators and barriers might be encountered when providing PT services. Taking part in this survey is voluntary. The only perceived risk to participating is that you may feel uncomfortable answering a question. You are free to skip any questions or discontinue at any time. You can decide not to participate in this research or you can start and then decide to leave the research at any time and it will not be held against you. To do so, simply exit the survey. Any data already collected will not be saved.

There is no benefit to you for participating in this study.

What happens to the information collected from this research study:

Efforts will be made to limit the use and disclosure of your personal information and survey results,to study team members and people who have a need to review this information which may include the IRB and other representatives of this institution. This survey is administered through Northwestern RedCap which provides a secure connection and repository of the results. All information will be provided anonymously and all information will be kept on a password protected computer only accessible by the research team. Datawill be presented in the aggregate only. To keep your answers confidential, we will not ask for your name during the survey and you will not be identifiable by name in any reports or publications. You will be identified only by a unique subject number. However, after taking the survey, you will have a chance to provide your name and email address if you choose to do so. Your name and email address will be stored separately from your data and will only be used if you indicate a willingness to participate in a follow up survey or focus group at a later time or have an interest in participating in the survey gift card drawing.

What else do I need to know?

You will not receive payment for taking part in this study. However, you may choose to participate in a gift card drawing ($50.00) after completing the survey. There will be one gift card that will be awarded after the survey is concluded. Chances of receiving this gift card are dependent on the total number of participants.

Who can I talk to?

If you have questions, concerns or complaints about the study, you may contact the Principal investigator Kristin Krosschell, PT, DPT, MA, PCS at k-krosschell@northwestern.edu or Jessica Trenkle, PT, DPT, PCS at jessica.trenkle@gmail.com.

This research has been reviewed and approved by an Institutional Review Board (“IRB”). You may talk to them at (312) 503-9338 or irb@northwestern.eduif:

  • Your questions, concerns, or complaints are not being answered by the research team.
  • You cannot reach the research team.
  • You want to talk to someone besides the research team.
  • You have questions about your rights as a research participant.
  • You want to get information or provide input about this research.

Voluntary nature of the study:

Submitting a completed survey will serve as implied consent to participate in this research project. No information will be released in a manner that could be used to identify you or your institution. If you would like a copy of this consent for your records you may print it from this screen.

This research is intended for individuals who are physical therapists practicing in the United States and who are 18 years of age or older. If you are under age 18, not a PT, or do not practice in the US, you should not complete the survey.

For all questions throughout the survey please respond only for patients with SMA subtypes that you have previously or are currently treating.

If a question asks about patients on disease modifying treatments please answer in reference to patients on any pharmacologic agent or therapy known to modify disease progression (e.g. Nusinersin, Spinraza, Alexis, Roche, Novartis)

If you need to exit the survey before completing and wish to resuume the survey at a later time please write down the return code that you will see on the exit screen as you will need that to return to your survey.

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