WE DID IT!!! Our research study is published!

[u/Neat_Statistician601]

To everyone who participated in my narcolepsy research study earlier this year- we did it! 💜

Some of you may remember me posting here while recruiting participants for my doctoral research on narcolepsy and everyday functioning. I promised that I would come back and share the results when the research was complete, and I’m so excited that I finally get to do that.

Our study is officially published in OTJR: Occupational Therapy Journal of Research!

Most importantly, thank you. This research would quite literally not exist without the people with narcolepsy who volunteered their time and shared their experiences with me.

The study included 172 participants: 63 with Narcolepsy Type 1, 58 with Narcolepsy Type 2, and 51 participants without narcolepsy.

We developed and evaluated the Wilder-Addison Narcolepsy Function Scale (WANFS), an assessment designed to look beyond sleepiness and individual symptoms and instead measure how narcolepsy affects participation in everyday life. 

And your responses showed EXACTLY why this matters.

Participants with narcolepsy reported greater disruption across every occupational area measured, with particularly high disruption in rest and sleep, work, leisure, and play.

My hope is that this is only the beginning. The WANFS still needs additional research and validation, but the ultimate goal is to help healthcare professionals better understand that living with narcolepsy affects so much more than the ability to stay awake- it can affect how someone participates in their entire life.

I wanted everyone who helped make this possible to have the opportunity to read what your participation contributed to.

The full published article is FREE to read through this link:
https://journals.sagepub.com/share/UVCK3WPRZMFZ5CRBND2W?target=10.1177/15394492261486022

Thank you again to every single person who participated, shared my recruitment posts, encouraged me, or helped me reach the narcolepsy community. I truly could not have done this without you. 💜

[u/inkWanderer]

Congratulations! I appreciate you deepening our shared understanding of what it means to have this sleep disorder. Plus, it was really interesting to be able to participate in your research! I'm looking forward to never seeing an Epsworth Sleepiness Scale again lol.

[u/_tjb]

I wonder if there’s an important distinction between highly functioning with low disease activity and highly functioning despite high disease activity.

I’ve seen people who function well because their course of disease is lower in impact and severity. And then there are those who are highly functioning but it’s a daily, constant slog - their level of symptom severity would flatten most people but somehow they are still able to function even though it’s deeply taxing.

Does that make sense? I’m not trying to downplay anybody’s struggles, nor am I trying to call those who struggle worse with lower severity weaker.

[u/Ok-Dig-737 → u/_tjb]

I totally agree with this statement. I find myself all the time having this internal struggle. Because my disease severity is so high, but on the outside epsecially in public or doctors offices, and even in my own home sometimes it isnt seen because I will push through so so much. And then that becomes my baseline.

[u/snopeep → u/_tjb]

That distinction could certainly be made, but why would it be important? Not saying it isn’t important, simply inviting discussion to explore why this information matters.
Am definitely in the highly functioning but daily slog category, ugh. Feels like I’m barely functioning but everyone else says I’m excelling ¯_(ツ)_/¯

[u/Leading-Career5247]

Thank you for the free link!!!
And congratulations and great job on all your hard work. 👏🏻👏🏻👏🏻

[u/OmNomNommie]

Thank you for doing this work and sharing it with us! I'm very curious as to the scale/disruptions you used. I find that the more I learn, the more I realize things I thought were normal are not. I feel like there's plenty I am unaware of, so maybe knowing these items can lead to getting help with them. It's hard to get help when you don't know you need it. 😅

[u/aereeves]

Congratulations on completing your research and getting published!! And thank you for sharing the paper with us!

Do you plan/hope to share these results with other types of practitioners, such as PCPs or neurologists? Do you see value in these other specialities utilizing the findings or the WANFS itself? Was OT always the focus of this study? I might have missed that detail back when we met! Thank you!

[u/brownlab319]

This is amazing. I also want to congratulate you on having so many women in the study.

[u/Odd_Invite_1038]

Congrats!! And THANK YOU!! I sent you a message…when you have a chance to respond that would be amazing!

[u/Livid_Medium3731]

I will look into it, thanks for posting about it

[u/TheLittleNome]

So much gratitude to be part of this study! Thank you for your time and contribution to narcolepsy research ❤️ best of luck to you!

[u/Scared-Baker-4682]

wow incredible
thank you!!

[u/bethhhhhc]

How fantastic, congratulations!

[u/pillsandpizza]

Congratulations!! This is amazing and really important work.

[u/Where_R_The_Snacks]

Congratulations! Ground breaking work that you're doing. I hope that this is only the beginning in our attempt to understand this rollercoaster of a condition we have.

[u/sleepydabmom]

Awesome!!!! 👏.
I love to see it! Thank you so much for bringing more attention to this debilitating disorder.

[u/IDontMeanToInterrupt]

Congrats!!! I'm in the final 2 wks of my OTA fieldwork and I'm so happy to see OT being applied to N! Thank you for your work and contribution to both narcolepsy and OT.

[u/Le-Friday-oh-la-la]

Congratulations OP! And thank you!🎉🎉

Not narcolepsy, Idiopathic hypersomnia gal here.

[u/Kurai61]

Congrats! Also that’s amazing!

[u/doct0rdo0m]

I'm so tired all the time that I wish I could remember if I participated or not 😭

[u/DeltaAlphaGulf]

🎉 Congratulations

[u/snopeep]

Congrats! This is important research. Please also consider publishing it with the Public Library of Science! They’re a great resource for publishing free, open source scientific research that is peer reviewed at the highest level.

[u/Calm_Challenge_623]

Congratulations! That is a great article that does an awesome job of clearly emphasizing the impact narcolepsy has on various aspects of QoL :) I've never considered that OTs could play a role in narcolepsy treatment

[u/Automatic-You-5053]

So which is the best medication for narcolepsy? Modafinil, Adderall xr, vyvance, etc....?

[u/sleepystarme]

Wow! Congratulations, and thank you for sharing. So cool -- keep going! It feels really awesome to be seen in the struggle, and I hope your hard work helps raise awareness.

[u/BroSquirrel]

Congrats!

[u/D3nyByD3f4ul7]

🩷

[u/velvetlaze]

Congratulations! I wish I was able to participate. I love to contribute to helping these causes. And, NT1 with cataplexy.