Adapting an Adolescent and Young Adult Program Housed in a Quaternary Cancer Centre to a Regional Cancer Centre: Creating Equitable Access to Developmentally Tailored Support

Round 1

Reviewer 1 Report

Comments and Suggestions for Authors

the paper presents a program developed at Princess Margaret Cancer Care in Toronto directed at adolescent and young adult patients with cancer. The program is well described and convincing both in focussing care for a vulnerable group of patients and in being adaptable to other cancer care centers. 

A special interest is taken on care for minority groups and marginalized patients, including aspects of intersectionality. 

A few points should be added and discussed:

line 68: please explain "quaternary" cancer center as the term is not familiar for all readers.

starting from line 72 - section 2.1 Social Determinants of Health: the focus turns immediately to SDH that apply to marginalized groups. As much as these are very important and too often overseen, the description should also include SDH for the general population beyond questions of majority/minority. AYA cancer patients heavily rely on family, friends, and peer group support, especially regarding social, financial, and spiritual support. In assessing patients' social status, needs, and resources, these questions should be included from the start, combined with the mentioned aspects. Also applies to line 143-146.

Starting from line 196 - section 2.3 Interdisciplinary approach: any holistic needs apporach must also adress spiritual needs of patients. Since spiritual, cultural and religious issues can be of great concern for adolescents and young adults, especially when distancing themselves from the religious affiliation of their upbringing, it is important to include this issue in holistic care and with specialized spiritual care providers (see T. A. Balboni/T. J. VanderWeele/St. D. Doan-Soares/K. N. G. Long/B. R. Ferrell/G. Fitchett/H. G. Koenig/P. A. Bain/Ch. Puchalski/K. E. Steinhauser/D. P. Sulmasy/H. K. Koh (2022), Spirituality in Serious Illness and Health; in: JAMA 328: 2, 184-197. doi:10.1001/jama.2022.11086.)  Also apllies to line 123f., and to lines 232-236.

line 136: include "sexual well-being" to assessment of "sexual drive", since well-being is more encompassing.

lines 164-167: Why is there no representative of the patient group included in the adcisory committee (but a patient partner?). Please clarify.

Table 1: the variety of Cancer Organizations does not include 'male' cancer types that are especially important for young male groups: testicular cancer and/or prostate cancer. Please explain or discuss.

Table 2 "AYA Resorce Navogator" is implossible to read.

Section 5: Overall, it seems highly problematic that the paper does not mention questions and aspects of and for palliative care for YAY cancer patients. Since questions of chronic and progredient cancer are very increase the burden and the issues for these patients and their families and/or friends, there should be at least mention of this and proposal for future initiatives.

Author Response

Reviewer 1  

the paper presents a program developed at Princess Margaret Cancer Care in Toronto directed at adolescent and young adult patients with cancer. The program is well described and convincing both in focussing care for a vulnerable group of patients and in being adaptable to other cancer care centers.  

A special interest is taken on care for minority groups and marginalized patients, including aspects of intersectionality.  

A few points should be added and discussed: 

line 68: please explain "quaternary" cancer center as the term is not familiar for all readers. 

RESPONSE: Thank you for your comment which is very important. You are right in suggesting an explanation of quaternary cancer center as the term is not familiar to all readers. The definition of term has been incorporated.  

starting from line 72 - section 2.1 Social Determinants of Health: the focus turns immediately to SDH that apply to marginalized groups. As much as these are very important and too often overseen, the description should also include SDH for the general population beyond questions of majority/minority. AYA cancer patients heavily rely on family, friends, and peer group support, especially regarding social, financial, and spiritual support. In assessing patients' social status, needs, and resources, these questions should be included from the start, combined with the mentioned aspects. Also applies to line 143-146. 

RESPONSE: Thank you for bringing this to our attention. You bring up a great perspective and we have incorporated a description of SDH for the general population before focusing on majority/minority populations.  

Starting from line 196 - section 2.3 Interdisciplinary approach: any holistic needs approach must also address spiritual needs of patients. Since spiritual, cultural and religious issues can be of great concern for adolescents and young adults, especially when distancing themselves from the religious affiliation of their upbringing, it is important to include this issue in holistic care and with specialized spiritual care providers (see T. A. Balboni/T. J. VanderWeele/St. D. Doan-Soares/K. N. G. Long/B. R. Ferrell/G. Fitchett/H. G. Koenig/P. A. Bain/Ch. Puchalski/K. E. Steinhauser/D. P. Sulmasy/H. K. Koh (2022), Spirituality in Serious Illness and Health; in: JAMA 328: 2, 184-197. doi:10.1001/jama.2022.11086.)  Also apllies to line 123f., and to lines 232-236. 

RESPONSE: Thank you for providing us with this insight. You bring up a great point pertaining to the spiritual aspects of AYA cancer care. We have incorporated this aspect to our description of holistic care.  

line 136: include "sexual well-being" to assessment of "sexual drive", since well-being is more encompassing. 

RESPONSE: Thank you for your helpful feedback. You are correct in well-being being a more encompassing term. We have incorporated this change in our revisions.  

lines 164-167: Why is there no representative of the patient group included in the adcisory committee (but a patient partner?). Please clarify. 

RESPONSE: Thank you for bringing this to our attention. We want to clarify that a patient partner does sit on the advisory committee and this patient partner is a representative of the patient group. We have reworded this individual as a patient representative in or revisions.  

Table 1: the variety of Cancer Organizations does not include 'male' cancer types that are especially important for young male groups: testicular cancer and/or prostate cancer. Please explain or discuss. 

RESPONSE: Thank you for providing us with this insight. You are right in mentioning the table does not include male cancer types. We have removed this in our revised manuscript.  

Table 2 "AYA Resorce Navogator" is implossible to read. 

RESPONSE: Thank you for notifying us of this issue. We have removed this table in our revised manuscript.  

Section 5: Overall, it seems highly problematic that the paper does not mention questions and aspects of and for palliative care for YAY cancer patients. Since questions of chronic and progredient cancer are very increase the burden and the issues for these patients and their families and/or friends, there should be at least mention of this and proposal for future initiatives. 

RESPONSE: Thank you for your feedback on this area of improvement. We have mentioned the aspects of AYA palliative care and how this branch is important to AYA care and is a future direction to be included in our advisory committee to add to the growth of our program. 

Reviewer 2 Report

Comments and Suggestions for Authors

The authors described an AYA program that provides holistic, individualized psychological support to young adults with cancer, particularly throughout the transition from adolescent to adulthood. Despite the topic's relevance to cancer care, this work lacks the structure of a scientific research paper. There were no methods or results sections in this manuscript, so it is unclear the purpose and the methodological anchoring of this description.

Comments on the Quality of English Language

n.a.

Author Response

Reviewer 2 

The authors described an AYA program that provides holistic, individualized psychological support to young adults with cancer, particularly throughout the transition from adolescent to adulthood. Despite the topic's relevance to cancer care, this work lacks the structure of a scientific research paper. There were no methods or results sections in this manuscript, so it is unclear the purpose and the methodological anchoring of this description. 

RESPONSE: Thank you for bringing this to our attention. Our manuscript is intentionally crafted as a perspective piece, resembling an editorial that shares our practical experiences in building and expanding our AYA program. The absence of traditional methods and results sections aligns with our aim to convey insights and reflections rather than adhere strictly to the structure of a scientific research paper, offering a narrative on the program's development and impact. We have successfully changed the submission type from “article” to “perspective” paper. Thank you for your comments, due to the change in manuscript type from “article” to “perspective” paper, we find this comment no longer is applicable.  

Reviewer 3 Report

Comments and Suggestions for Authors

Revision of the manuscript Current Oncology- 2852862

I would like to congratulate the authors for their initiative and the manuscript is of very high interest for improving holistic care to adolescents and young adults with cancer.

The manuscript is easy to read but I had to look at the references and read the corresponding abstracts to better understand how the AYA Program at Princess Margaret Cancer Centre was well succeeded. For example, the text written in lines 187-190 “At PM, we were able to collect data on patient volumes as well as on the impact of program implementation on patient satisfaction, patients’ perception of the AYA program’s added value, and patients’perception of the need for improvement in care delivery (ie. fertility preservation) [30, 37]” informs on which indicators were used but does not inform on the success of the AYA Program. This information could be presented elsewhere if the authors prefer but I feel that there were no data on the success of the Program.

Moreover, in line 177, the authors refer that they will describe the challenges faced but only Future initiatives are presented (lines 293-298) which are not really challenges. Could the authors add what challenges were faced?

Additionally, I would like to present the following comments and suggestions:

Title: I am not familiar with the AYA abbreviation. I suggest not to use the abbreviation in the title.

Lines 126-128: How is this identification made? Semi-structured interview to ensure comprehensive and systematic questioning of all unmet needs? Questionnaires? Consultation of the individual (15 years old) alone, with the parents, the partner?

What are the knowledge and experience of the clinical nurse specialist? Does it differ from the nurse integrated in the usual clinical care of patients with cancer?

Is one CNP enough for the volume of AYA patients? What would be an adequate ratio of CNP/AYA patients? The CNP was exclusively dedicated to the Program?

Lines 132-133: are these external services paid by the patient? How are these services financed?

Lines 159-160: “however they must be receiving their oncology care at PM” is contradictory to the information “Patients: If you are not a Princess Margaret patient, you can self-refer to the program anytime by emailing aya@uhn.ca.” (https://www.uhn.ca/PrincessMargaret/Clinics/Adolescent_Young_Adult_Oncology)

Should this information be updated?

Figure 1: when are patients discharged from the AYA Program?

Author Response

Reviewer 3 

I would like to congratulate the authors for their initiative and the manuscript is of very high interest for improving holistic care to adolescents and young adults with cancer. 

The manuscript is easy to read but I had to look at the references and read the corresponding abstracts to better understand how the AYA Program at Princess Margaret Cancer Centre was well succeeded. For example, the text written in lines 187-190 “At PM, we were able to collect data on patient volumes as well as on the impact of program implementation on patient satisfaction, patients’ perception of the AYA program’s added value, and patients’perception of the need for improvement in care delivery (ie. fertility preservation) [30, 37]” informs on which indicators were used but does not inform on the success of the AYA Program. This information could be presented elsewhere if the authors prefer but I feel that there were no data on the success of the Program. 

RESPONSE: Thank you for bringing this insight to our attention. We have added information describing the success of the AYA program, including area of strengths. We have also described the areas of improvement in the revisions as well.  

Moreover, in line 177, the authors refer that they will describe the challenges faced but only Future initiatives are presented (lines 293-298) which are not really challenges. Could the authors add what challenges were faced? 

RESPONSE: Thank you for your comment which brings up a great point. We agree that the manuscript does not really address the challenges faced. We have added in a section mentioning the challenges faced.  

Additionally, I would like to present the following comments and suggestions: 

Title: I am not familiar with the AYA abbreviation. I suggest not to use the abbreviation in the title. 

RESPONSE: Thank you for bringing this insight to our attention. We have removed the abbreviation from our title in our revisions.  

Lines 126-128: How is this identification made? Semi-structured interview to ensure comprehensive and systematic questioning of all unmet needs? Questionnaires? Consultation of the individual (15 years old) alone, with the parents, the partner? 

RESPONSE: Thank you for addressing the need for further insight. In terms of your questions, identification is made via a 45 min phone call, video call or in person appointment. Framework for the consultation is conversational in nature where the CNS discusses common documented concerns for AYAs navigating cancer. The consultation and its contents are dynamic / fluid, and ever changing based on changing needs for AYAs, and feedback from our patients. There currently is not a validated screening tool for PROMs, but this is an initiative our team hopes to address. 

What are the knowledge and experience of the clinical nurse specialist? Does it differ from the nurse integrated in the usual clinical care of patients with cancer? 

RESPONSE: Adolescent and Young Adult Clinical Nurse Specialists (CNS) possess specialized knowledge tailored to the unique needs of AYA patients, encompassing expertise in building clinical pathways, standard operating procedures (SOPs), conducting research, and providing leadership. Their role extends beyond traditional clinical care, contributing to a culture shift within the organization by actively shaping and enhancing the comprehensive approach to care for adolescents and young adults facing cancer. This specialized knowledge and experience distinguish AYA CNS from nurses integrated into standard clinical care, emphasizing their pivotal role in addressing the specific challenges and requirements of this patient demographic. 

Is one CNP enough for the volume of AYA patients? What would be an adequate ratio of CNP/AYA patients? The CNP was exclusively dedicated to the Program? 

RESPONSE: Ensuring timely and personalized care for AYA patients is a priority, as evidenced by patients being seen by the Clinical Nurse Specialist (CNS) within 2 weeks of referral, with follow-up plans collaboratively developed. Recognizing the growing demand, the program is actively expanding by onboarding a second CNS, aiming to enhance accessibility and maintain an optimal ratio to accommodate the volume of AYA patients and provide comprehensive support. 

Lines 132-133: are these external services paid by the patient? How are these services financed? 

RESPONSE: Thank you for notifying us of this needed clarification. We would like to clarify that these are service providers that are OHIP funded but are willing to accept patients for expedited consultation.  

Lines 159-160: “however they must be receiving their oncology care at PM” is contradictory to the information “Patients: If you are not a Princess Margaret patient, you can self-refer to the program anytime by emailing aya@uhn.ca.” (https://www.uhn.ca/PrincessMargaret/Clinics/Adolescent_Young_Adult_Oncology) 

Should this information be updated? 

RESPONSE: Thank you for your comment which is very important. You bring up a great point that these two statements appear to be contradictory. We want to update that patients do not have to be receiving oncology care at PM to be involved in the program. We have revised this contradiction in our revisions.  

Figure 1: when are patients discharged from the AYA Program? 

RESPONSE: Thank you for notifying us of this needed clarification. We would like to address the patient discharge process from the AYA program. We assess patient needs for continued support and/or readiness for discharge at each patient interaction. Discharge from AYA means discharge from 1:1 clinical support from social worker and/or clinical nurse specialist, but patient remains involved with community and has continued access to our services as needed moving forward and can re-engage at any time.  

Reviewer 4 Report

Comments and Suggestions for Authors

Dear Authors,
The manuscript presents a wealth of detailed information and insights, which is commendable. However, there are several areas where clarity and depth could significantly enhance the paper's contribution to its field. Below are some suggestions for refining your manuscript while maintaining the integrity of your original work.

Introduction.
The introduction sets the stage for your readers and, as such, should provide a cohesive framework that aligns the objectives and findings of your study. Currently, the distinction between factual information and value judgments seems somewhat blurred; clarifying this distinction will strengthen the credibility of your study. In addition, articulating the purpose of your communication more clearly will guide your readers more effectively through your narrative. Consider elaborating on the unique contributions your study makes to the existing body of knowledge and how it can benefit the reader. This will not only justify the publication of your text, but also underscore its value to your audience.

Section 2 (SDH and Intersectionality)
This section offers a detailed exploration of various determinants, but the rationale behind the selection of these specific determinants could be more clearly articulated. Providing a rationale for your choices will give your readers a more complete understanding of your research process. In addition, discussing any alternative determinants you considered or factors that were deemed unimportant during your study will add depth to your analysis. It would be beneficial if you could encapsulate the essence of this section, perhaps in a concise summary, to provide the reader with a clear takeaway of your findings and the reasoning behind them. Regarding the deterministic tone observed in line 101, consider whether there might be exceptions to this assertion and whether acknowledging such exceptions might provide a more nuanced perspective. Also, the term "constructs" on line 102 might benefit from a clearer definition or more precise term to improve the clarity of your argument; it seems to be confused with "object" itself.

Other sections
While the focus on the "team" in Section 3.2 is critical, the inclusion of other relevant stakeholders could provide a more holistic view of your research context.

In Part 4, a more detailed introduction to the community cancer center could provide valuable context and enrich the reader's understanding of your study setting.

Table 3, which illustrates the logic model, is a central element of your paper. While respecting your perspective, consider elaborating on how this logic model could serve as a foundational framework for describing and evaluating the adaptation process of the AYA program. This could significantly increase the analytical depth of your manuscript.

Discussion.
In the discussion, a summary of the key findings or facts would serve as a strong introduction and strengthen the impact of your research. The inclusion of "lessons learned" is not only essential, but would also provide your readers with invaluable practical insights. Finally, the absence of a conclusion is noticeable. A well-written conclusion would not only bring closure to your paper, but also highlight its significance and contribution to the field. This would provide a resonant and impactful end to your manuscript.

Your research represents a valuable opportunity to contribute to your field, and with these suggested revisions, its potential impact could be greatly enhanced. I look forward to the further development of your manuscript.

Author Response

Reviewer 4  

Dear Authors, 
The manuscript presents a wealth of detailed information and insights, which is commendable. However, there are several areas where clarity and depth could significantly enhance the paper's contribution to its field. Below are some suggestions for refining your manuscript while maintaining the integrity of your original work. 
 
Introduction. 
The introduction sets the stage for your readers and, as such, should provide a cohesive framework that aligns the objectives and findings of your study. Currently, the distinction between factual information and value judgments seems somewhat blurred; clarifying this distinction will strengthen the credibility of your study. In addition, articulating the purpose of your communication more clearly will guide your readers more effectively through your narrative. Consider elaborating on the unique contributions your study makes to the existing body of knowledge and how it can benefit the reader. This will not only justify the publication of your text, but also underscore its value to your audience. 

RESPONSE: Thank you for bringing this to our attention. We have made the necessary changes to remove any confusion on what factual importation and judgements is. We have articulated the purpose of this paper more clearly. We have also elaborated on the  contributions this study will have on body of knowledge and benefits to reader. 

Section 2 (SDH and Intersectionality) 
This section offers a detailed exploration of various determinants, but the rationale behind the selection of these specific determinants could be more clearly articulated. Providing a rationale for your choices will give your readers a more complete understanding of your research process. In addition, discussing any alternative determinants you considered or factors that were deemed unimportant during your study will add depth to your analysis. It would be beneficial if you could encapsulate the essence of this section, perhaps in a concise summary, to provide the reader with a clear takeaway of your findings and the reasoning behind them. Regarding the deterministic tone observed in line 101, consider whether there might be exceptions to this assertion and whether acknowledging such exceptions might provide a more nuanced perspective. Also, the term "constructs" on line 102 might benefit from a clearer definition or more precise term to improve the clarity of your argument; it seems to be confused with "object" itself. 

RESPONSE: Thank you for this feedback. We have incorporated these changes into the manuscript revisions.  
 
Other sections 
While the focus on the "team" in Section 3.2 is critical, the inclusion of other relevant stakeholders could provide a more holistic view of your research context. 

RESPONSE: Thank you for bringing this to our attention. We have included other relevant stakeholders that provide a more holistic view of our research.  
 
In Part 4, a more detailed introduction to the community cancer center could provide valuable context and enrich the reader's understanding of your study setting. 

RESPONSE: Thank you for providing us with this valuable insight. We have provided some details on the community cancer center in the revised manuscript.  
 
Table 3, which illustrates the logic model, is a central element of your paper. While respecting your perspective, consider elaborating on how this logic model could serve as a foundational framework for describing and evaluating the adaptation process of the AYA program. This could significantly increase the analytical depth of your manuscript. 

RESPONSE: Thank you for your comment which is very valuable. We have expanded on the importance of this logic model and how it can serve as a foundation for describing and evaluating the adaptation process of the AYA program.  
 
Discussion. 
In the discussion, a summary of the key findings or facts would serve as a strong introduction and strengthen the impact of your research. The inclusion of "lessons learned" is not only essential but would also provide your readers with invaluable practical insights. Finally, the absence of a conclusion is noticeable. A well-written conclusion would not only bring closure to your paper, but also highlight its significance and contribution to the field. This would provide a resonant and impactful end to your manuscript. 

RESPONSE: Thank you for your comment. It is very insightful and provides us with suggestions that will significantly improve our paper. We have added in a conclusion as well as lessons learned section in the revised paper.  
 
Your research represents a valuable opportunity to contribute to your field, and with these suggested revisions, its potential impact could be greatly enhanced. I look forward to the further development of your manuscript. 

Reviewer 5 Report

Comments and Suggestions for Authors

Dear Editor,

Thank you very much for the opportunity to review this manuscript. This manuscript reported a development of AYA program. While the topic is interesting and might contribute to the field of oncology, we have some comments for the authors to enhance the clarity of the manuscript.

1.     The background is not clearly described. In the abstract, it is written that this AYA program was established in 2014, which is ten years ago. What is the reason that authors decided to write about the development of the AYA program now after it was established ten years ago?

2.     Please add the significance of this paper for international readers.

3.     In the abstract, it is stated that the AYA program was established in 2014, but this information is not found in the section on the program development process. Please add this information to the manuscript as well.

4.   There is no conclusion in the manuscript. Please add a conclusion.

Author Response

Reviewer 5 

Dear Editor, 

Thank you very much for the opportunity to review this manuscript. This manuscript reported a development of AYA program. While the topic is interesting and might contribute to the field of oncology, we have some comments for the authors to enhance the clarity of the manuscript. 

1. The background is not clearly described. In the abstract, it is written that this AYA program was established in 2014, which is ten years ago. What is the reason that authors decided to write about the development of the AYA program now after it was established ten years ago? 

RESPONSE: Thank you for bringing up this great point to address. The authors chose to document the development of the Princess Margaret Adolescent and Young Adult (AYA) Oncology program at this juncture, ten years after its establishment in 2014, to showcase its successes, challenges, and the expansion of its model to a regional cancer center, providing valuable insights and serving as a potential blueprint for further advancements and policy advocacy in AYA oncology care beyond the initial ten years of establishment to serve more remote and underserved communities.  

2.     Please add the significance of this paper for international readers. 

RESPONSE: Thank you for providing this valuable suggestion to our manuscript that benefits our readers. We have incorporated a section touching on the significance of this paper.  

3.     In the abstract, it is stated that the AYA program was established in 2014, but this information is not found in the section on the program development process. Please add this information to the manuscript as well. 

RESPONSE: Thank you for providing this clarification. I want to mention that this information is mentioned in the program development process section. Please see line 119. “The AYA program is one of the many specialized services offered at PM [27] and was founded in 2014 after identifying a gap in care for this subpopulation.” 

4.   There is no conclusion in the manuscript. Please add a conclusion. 

RESPONSE: Thank you for providing this valuable suggestion to our manuscript. We have incorporated a section describing the major take aways and conclusions on this paper.  

Round 2

Reviewer 2 Report

Comments and Suggestions for Authors

Current Oncology journal requires that authors submit the following type of publications: original reserach articles, case reports and review. Descriptive or perspective paper are not within the scope of this  journal. 

Reviewer 4 Report

Comments and Suggestions for Authors

Dear Authors,
I want to express my appreciation for the conscientious effort you have made to address my recommendations. After reviewing the changes, I am pleased to confirm that I have no further comments.

It has been a privilege to engage with your work, and I wish you success as your paper progresses through the publication process.

Best wishes,