Reflections on the Quality of Life of Adults with Down Syndrome from an International Congress

Round 1

Reviewer 1 Report

Comments and Suggestions for Authors

I am somewhat uncertain about how to assess this manuscript. One the one hand is it well written and structured, almost easy-read. It also presents an innovative strategy to involve persons with Down syndrome in research and to let them speak for themselves regarding what is important for a good life. One the other hand is it hardly a scientific article. I miss critical discussions regarding what this approach brought to our stock of knowledge compared to existing literature, and also a more elaborated review of existing studies. I am in particular worried about the use of AI in the analysis of data. I am sure this is a time-saving strategy, but on the other hand: the two most well-known limitations of AI are (i) that it is very hard to find out the basis for the decisions or results, and (ii) AI does not see its own limitations. In combination, this fits badly with a scientific analysis of qualitative data. There is clearly a need to reflect more on this issue in the article.

I will leave it to the editors to make the decision as to whether this submission fits the journals aims and scope or this topical collection. It has clear strengths and I liked it, but is hardly a scientific article. Thus it would fit well as a commentary or something like that, but need to be rewritten in another format to pass as a scientific article. If it is accepted as a commentary or essay, I would anyhow suggest a more critical discussion of the use of AI as a tool in qualitative analyses.

Author Response

See attached file

Author Response File: Author Response.pdf

Reviewer 2 Report

Comments and Suggestions for Authors

I love the objective of this article being designed for people with IDD, in particular people with Down syndrome and their families, to understand a project to look at quality of life. My comments are relatively minor, and ultimately, the authors may determine that it would add too much to the paper to address, but I share them for consideration.

The first gap for me is that the paper does not mention the term guardianship. Data suggests that nearly 50% of people with IDD have a guardian, and this is often more common for people with Down syndrome who may have more moderate cognitive difficulties than others with IDD. Guardianship often means that people with IDD are not legally authorized to consent to participate in research or make certain decisions. A key policy solution is the idea of supported decision-making, but these arrangements are not always legally binding. To me, this might be an important policy solution that could be described as a local opportunity to improve quality of life.

The second gap to raise is that there is a fair amount of literature on participatory methods with people with IDD, and I don't see a lot of it mentioned. Perhaps what's most important to note there is that other research projects have developed trainings and materials to use to support inclusive research teams, and these might be helpful to refer to for any advocacy groups looking to use inclusive research.  For example, the PCORI funded READI curriculum, the Re4All training, and others. I believe these have a very practical application, and so it wouldn't be so much about adding more to the research results but rather to the promsing tools to support the recommendations.

Author Response

see attached file

Author Response File: Author Response.pdf

Reviewer 3 Report

Comments and Suggestions for Authors

Reviewer Comments

This is an accessible and engaging manuscript that reports on an international forum designed to directly capture the voices of adults with Down syndrome regarding their quality of life. I appreciate the authors for their submission to the journal. Please see my individual comments below.

(Methods): I understand and appreciate the use of simple plain language for this manuscript to make it easier for all to understand. However, I feel the methods could be more detailed to further assist those that want to implement a similar program at their own organization.

1. (Page 3 line 100) Can you provide the specific age range of participants?
2. (page 3 lines 111-113) Can you provide more details about how the supporters helped with communication? Were there any issues that arose with communication tools or translating and how were those resolved? This can help others in the future plan in case they run into difficulties.
3. (page 4 lines 139-140) How were the topics chosen to group the ideas into? Was this done collectively as a group or individually, then combined? Also, were there any disagreements among the researchers, and if so, how were the disagreements resolved?
4. (page 5 line 179) Were there any inconsistencies between the topics selected by the researchers and the themes generated by ChatGPT?

(Findings):

5. Figure 3. Are the themes listed in this figure the selected topics of the researchers or are they generated by ChatGPT? Please clarity.

(Discussion)

6. Overall, the discussion could be strengthened by highlighting the unique insights gained from this large-scale participatory approach and illustrating how these findings can inform real-world policy and practice. For instance, by guiding advocacy organizations and service providers in designing programs and setting priorities that better reflect the voices and needs of people with Down syndrome.
7. (page 8 line 297) Change “{“ to “[“.

Author Response

See attached file

Author Response File: Author Response.pdf

Round 2

Reviewer 1 Report

Comments and Suggestions for Authors

My earlier concerns are adequately addressed either in the submission itself or the response sheet. I still think the use of AI could have been more critically discussed, but accept that this may be in conflict with the style of the paper. 

Reviewer 3 Report

Comments and Suggestions for Authors

Thank you for thoroughly addressing each of my comments and suggestions. I have no further comments at this time.