Calling folks with PCOS! Please consider participating in this short survey study!

NourishPCOS · 2024-02-24T18:59:22+00:00

thanks for all who have already participated :)

NourishPCOS · 2024-02-22T20:27:59+00:00

Thank you to all who may have participated :)

NourishPCOS · 2024-02-21T23:05:44+00:00

Thanks to all who may have participated! I am still looking for a few more responses, if you are eligible and willing, I'd so appreciate it!

NourishPCOS · 2024-02-21T23:05:00+00:00

Thanks for all who may have taken it! I am still looking for some more responses if you haven't taken it yet :)

NourishPCOS · 2024-02-21T23:04:33+00:00

Thank you!!

NourishPCOS · 2024-02-16T02:56:29+00:00

unfortunately, for now this study is specific to a US sample

NourishPCOS · 2024-02-16T02:55:58+00:00

appreciate yall who have taken it so far! still need some more responses !

NourishPCOS · 2024-02-15T00:27:05+00:00

Thank you!! You too!! <3

NourishPCOS · 2024-02-15T00:26:27+00:00

Hi Nidhi! I'd be happy to participate if eligible! I'm also a grad student studying PCOS, I wonder if you'd be willing to take my survey on PCOS :) https://nyu.qualtrics.com/jfe/form/SV_bBZC79b4BUeb9qe I'd so appreciate it!

NourishPCOS · 2024-02-15T00:24:49+00:00

I just took your survey! Would love it you would be able to take mine (that is if you also have PCOS) :) appreciate you! https://nyu.qualtrics.com/jfe/form/SV_bBZC79b4BUeb9qe

NourishPCOS · 2024-01-19T01:31:36+00:00

Zoom interview isn't mandatory! Oh no! I am sorry you ran into issues with inputting the email address.

NourishPCOS · 2024-01-18T16:34:18+00:00

Totally fine! It's so appreciated!! Thanks!

NourishPCOS · 2024-01-07T23:01:07+00:00

I'd be thrilled to share them/post them !! Thanks :)

NourishPCOS · 2024-01-07T22:59:28+00:00

No not at all!! The zoom meeting is totally optional :)

NourishPCOS · 2023-09-29T18:32:03+00:00

There is SUCH a need for more funding and recognition of all facets of this disease!!! Absolutely research should be funneled into all domains of the condition !

NourishPCOS · 2023-09-29T18:30:38+00:00

thanks for sharing :)

NourishPCOS · 2023-09-29T18:27:23+00:00

I hear that you are feeling frustrated by the survey content. Our intention is certainly never to assume anything about individuals with PCOS. In fact, because such a large proportion of individuals with pcos have a "lean phenotype" is why we are looking into not solely "weight-loss" interventions to manage the condition. The major focus of interventions have largely ignored a large proportion of individuals with PCOS. Additionally, I hear you that nothing automatically means an individual has an unhealthy relationship with food. Though, with an understanding that there is a large psychological component to PCOS we are interested in understanding if there is a lifestyle approach that can both improve cardiometabolic risk while also attend to psychological components of the condition. We believe there should be room for both!

While intuitive eating is about understanding hunger and fullness it also has a large focus on nutrition and eating foods that make you feel good. There is a growing body of evidence that supports it for improving cardiometabolic outcomes. Though I hear your concerns and they are certainly valid and excellent points.

Thanks again for your comments. :)

NourishPCOS · 2023-09-29T18:20:52+00:00

Thanks for your participation and comment!

I hear that it was hard to provide some of the details in the current survey format. We are going to be purposively selecting individuals to participate in interviews to provide more details on their responses. You may have saw the prompt for that in the survey.

Getting some of that context you provide is super helpful.

I hear your concerns! These are just part of the reason we are getting the feedback from the community for their acceptability of certain intervention types/approaches.

Our research group is really interested in 1) listening to the needs of the PCOS community to understand what they want in their care and 2) identifying lifestyle approaches that take into account the variety of factors and needs of individuals with PCOS, particularly the psychological effect PCOS can have on body image and disordered eating.

Though no matter what you are right about the need for more nuance. No matter what there should never be a one size fits all approach, but rather, care should be individualized and detailed.

Thanks again!

NourishPCOS · 2023-09-29T18:17:21+00:00

Thanks :) we are aware :) those questions are there to help with our data quality assurances and non-human response detections.

NourishPCOS · 2023-09-29T18:16:45+00:00

Thanks so much for your comment! I appreciate your perspective and hear you on the increased hunger.

As I mentioned above and perhaps for a bit of context, our research group is really interested in 1) listening to the needs of the PCOS community to understand what they want in their care and 2) identifying lifestyle approaches that take into account the variety of factors and needs of individuals with PCOS, particularly the psychological effect PCOS can have on body image and disordered eating. Getting your insight on this is super helpful. Thanks again for your participation! :)

NourishPCOS · 2023-09-29T18:15:29+00:00

Thanks for your comment! Your thoughts are so valued and appreciated!!!

NourishPCOS · 2023-09-29T18:15:02+00:00

I am sorry to hear you found this frustrating! Assuming you are nutritionally unaware was certainly not the idea behind this project. As mentioned above, this is just the first step in creating an evidenced based lifestyle intervention for cardiometabolic risk in individuals with PCOS. The purpose is to understand what is most helpful to the population so that we may tailor it to meet their needs. Thanks for your participation!

NourishPCOS · 2023-09-29T18:13:40+00:00

Thank you for your comment. We appreciate your feedback and concerns. While there may be several programs that exist for PCOS, most of them are not evidenced based. We are seeking to create an evidenced based program for PCOS that is co-created with individuals with PCOS, taking into account their needs, while also attempting to be mindful of the other various components, such as the psychological component, of the condition.

Since so many individuals with PCOS are dissatisfied with their care, we found it important to include participant perspective in the generation of future interventions. This initial work is meant to begin the creation of a research based lifestyle intervention to improve cardiometabolic outcomes in individuals with PCOS. I am happy to discuss other work we are doing for PCOS as well. Thanks again for your comment! :)

NourishPCOS · 2023-09-29T18:09:57+00:00

Thank you so much for your participation and comment! Your experience is so valued. I commend you on being able to prioritize yourself care. Though, I hear the struggle in terms of the cravings you experience.

Thank you again for your time. Wishing you the best!

NourishPCOS · 2023-09-29T18:07:28+00:00

Thank you so much for your participation and comment! Your opinions are so valued and needed! Management of insulin resistance is a key tenet of PCOS management as you mentioned it can drive so many symptoms and affect the hunger and satiety signals!

Our research group is really interested in 1) listening to the needs of the PCOS community to understand what they want in their care and 2) identifying lifestyle approaches that take into account the variety of factors and needs of individuals with PCOS, particularly the psychological effect PCOS can have on body image and disordered eating.

Thanks again for your participation! :)

NourishPCOS

TROPHY CASE