Exploring the Use of a Digital Platform for Cancer Patients to Report Their Demographics, Disease and Therapy Characteristics, Age, and Educational Disparities: An Early-Stage Feasibility Study
, Helena Linardou 2, Sofia Agelaki 2, Athanasios Karampeazis 2, Nikolaos Tsoukalas 2, Amanda Psyrri 2, Michalis Karamouzis 2, Konstantinos N. Syrigos 2, Alexandros Ardavanis 2, Ilias Athanasiadis 2, Eleni Arvanitou 2, Stavroula Sgourou 2, Anastasia Mala 2, Christos Vallilas 2 and Ioannis Boukovinas 2
Round 1
Reviewer 1 Report
This paper explores the clinical use of a digital platform called for cancer patients. The study aimed to assess the self-reported demographics, disease, and therapy characteristics of patients, as well as their socio-economic issues. The study suggests that digital platforms may enable patients to record real-world and real-time therapy toxicities and symptoms, which can complement clinical trial results and increase the accuracy of health care policy and economic models.
Other than self-reported data from cancer patients, the reliability of the data should be further discussed.
The paper mentions age and education disparities in the use of digital health innovation. It would be interesting to further discuss the potential solutions to address these disparities, such as targeted educational programs or user-friendly design features.
The study focused on a relatively small sample of patients from Cancer Centers, where can interested readers obtain these experimental data?
Language check is adviced.
Author Response
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Reviewer #1
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Comment
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Author response |
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The reliability of the data should be further discussed.
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Thank you very much for your excellent point. Yes, the medical data were completed by the patients and an issue of reliability exists, since these data were not compared with the medical data of the files in the Hospitals. This study was an early trial to check the feasibility of the platform. The patients completed the questionnaires anonymous, at their home convenience. However, we believe that the data are correct, at the largest extent, for the following reasons: The study patients were free to collaborate with the family, at home. Family members are actively involved with patient’s care and knows well most details of the disease and treatments. To that point, it is our experience, when we see patients, at private dental oncology practice, the patient or the family member know the accurate cancer type and therapies.
Furthermore, since March we connected with Hospitals in the frame of SymbIASIS program and run our next study. This time all patients are inpatients, on i.v. therapy, chemotherapy, immunotherapy, or targeted therapy and complete the questionnaire (modified from the previous one). During their i.v. treatment they are alone, without the presence of a family member. A collaborator checks their answer on cancer and therapy type by asking the nurse in the room. This checking so far has shown that most patients’ answers related to their disease and treatment are correct! We see about 140 patients per week from the 2 Hospitals, with which CureCancer has been connected as for today. Only few older patients, over 75, do not know what treatment they receive, but they know their type of cancer.
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Age and educational disparities to further discuss the potential solutions to address these disparities, such as targeted educational programs or user-friendly design features.
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Potential solutions were further discussed, and an additional reference was included: New technologies, new disparities: the intersection of electronic health and digital literacy. Smith et al 2019. |
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The study focused on a relatively small sample of patients from Cancer Centres, where can interested readers obtain these experimental data?
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The data are in the possession of the Hellenic Society of Medical Oncology and are available to interested readers, when asking. |
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Language check is advised.
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Thank you for the comment. Done |
Reviewer 2 Report
The article by Boukovinas et al describes a novel platform that invited patients from 9 Cancer Centers to register and complete a comprehensive questionnaire on demographics, disease history, therapy, and other relevant characteristics. Additionally, patients were asked to provide feedback on their experience while using the platform and uploading their medical data.
However, upon careful consideration, I believe that the results presented in the article may not fully align with the publication criteria of the journal, which primarily focuses on reporting and reviewing progress in the management of the disease.
Author Response
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Reviewer #2
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Comment
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The results presented in the article may not fully align with the publication criteria of the journal, which primarily focuses on reporting and reviewing progress in the management of the disease.
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Thank you for your good words and the interesting comment! Indeed, this study introduces the digital medicine to better serve the management of the disease. |
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Reviewer 3 Report
Galiti and colleagues submitted a manuscript evaluating the feasibility of a digital platform in a small population of cancer patients. The research question is interesting as digital healthcare is a high unmet need that will likely be adopted in many healthcare systems in the near future. This is, as far as I researched, the first potential publication of a digital platform “CureCancer.eu” that has already been adopted in Greece. I am happy to review the manuscript again should the authors decide to resubmit it.
I have several questions
1) More information on the platform would be desirable (e.g. what is the “cure part”? Are there any digital interventions planned?)? Or is the platform aimed to be a digital file and medical calendar & diary?
2) Infortmation whether there are potential (financial) conflict of interests would be desirable
3) It is, also after browsing the website, not clear which benefit a patient would have from regularly using the platform apart from facilitated transfer of documents to healthcare professionals. This should be highlighted to also further understand why a small population might have decided to participate in this study
4) Which measures have been undertaken to reduce selection bias? The study had been performed in 9 major cancer centers which is a great collaborative effort that the authors are to be condemned for. However, only 159 patients that are mainly young and well educated participated. In other words: Were all patients that presented to these centers asked to participate?
5) The endpoint was defined as ≥70% completing the surveys while in 2.2 it was mentioned that feasibility is met if >75% would complete the questionnaire. However, this endpoint is also linked to the recruitment strategy.
6) It is unclear why the manuscript was submitted more than two years after the data have been collected.
7) Table 2: The majority of participants did not find it easy to upload files. However, the majority preferred the digital platform and would recommend it. Please elaborate on this discrepancy. More explanation on the benefits for the patients beyond faster data transfer to physicians would help the readers to follow.
8) Please elaborate what readers can learn and how this digital platform can be adopted in other healthcare systems.
9) I would suggest another title that also emphasizes the early feasibility stage.
10) The discussion should include that future studies are needed and should point out how such studies should be designed (e.g., more patients and multicentric)
A few flaws can be improved
Author Response
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Reviewer #3
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Comment
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Author response |
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Minor editing of English is required. A few flaws can be improved.
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Thank you for the comment. The manuscript was re-read by some of our Medical Oncologists co-authors, with more than 10 years work in USA Hospitals. If you feel that we need more advanced English language editing, we can ask for a professional office. |
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Introduction must be improved.
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Introduction was improved. Four more referrences have been added in the manuscript. |
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Research design must be improved.
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Study design was better described. It was clarifies that patients registered and completed the questionnaire at home and could ask help from the family. |
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The methods described must be improved.
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Methods description was improved. |
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The results clarity of presentation can be improved.
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Results clarity was improved. |
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The conclusions supported by the results can be improved.
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We have improved the conclusions, as supported by the results. |
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Several Questions |
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What is the cure part, are there any digital interventions planned?
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The platform has a role in supportive cancer care and not cure part. It is under constant revision to facilitate patients in their everyday life with cancer and their better communication with physicians. No digital treatment interventions are planned, as of now, except those of Telemedicine and receive supportive care. The cure part may be considered at a later stage. |
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Information whether there is potential (financial) conflict of interests would be desirable.
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There is no financial conflict of interest. The platform was inspired by Dr. Dimitra Galiti, dentist, senior (soon to graduate) PhD student. She received a loan from her parents to create CureCancer. Last year, 2022, CureCancer received 61K euros from Elevate Greece, the European Union and Greece, for more info please see at the footer of CureCancer. |
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It is not clear which benefit a patient would have from regularly using the platform apart from facilitated transfer of documents to healthcare professionals. |
The patient can benefit with easy sharing his well-organized files with Health Care Professionals (HCP) and communicate with them anytime from anywhere with the feature of telemedicine and receive early and effective management. The collaboration of HCPs of different specialties, after having shared the patients files, is another important advantage and benefit for the patient. This collaboration can also minimize the problem of polypharmacy by different physicians. Please see an example in the text, Results section, page 12. Patients can also use setting for reminding the time for medications. It is true that this part must change and become more user-friendly. |
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Were all patients that presented to these centres asked to participate? |
Asking of the patients to participate was at the descretion of each Centre. Not all patients that presented to the Cancer Centre were asked. The lack of financial support did not allow to hire a dedicated nurse to do the job of asking all patients at the outpatient clinic and note the number of patients who were asked. Thus, for the results of the present study, we know (1) the number of patients, who registered of all those who accepted to participate and signed the consent form and (2) the number of patients, who completed the questionnaire of all those who registered. At this step, it was important for us to investigate if any patients would accept, register, and succeed to complete the questionnaire. Digital innovation continues to be a new issue in Greece, particularly among the older age cancer patients. |
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The endpoint was defined as >70% completing the surveys, while in 2.2 it was mentioned that the feasibility is met if >75% would complete the questionnaire. |
We corrected the number 75, as it was a mistake. The >70% is the correct number. Thank you! |
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It is unclear why the manuscript was submitted more that two years after the data have been collected. |
Publication was delayed for several reasons: Dr. Dimitra Galiti was in the middle of her PhD studies, while a baby came onboard. Today all the PhD word is done, necessary publications are completed to present the Thesis and receive the PhD diploma, hopefully in September 2023. And the baby attends the nursery school. |
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Table 2: Most participants did not find it easy to upload files. But they would prefer and recommend the digital platform. Please elaborate to this discrepancy. More explanation on the benefits for patients beyond faster data transfer to physicians would help the readers to follow. |
Patients liked the platform, since they could save costs, travels, time, avoid contacting Covid-19 and other infections, thus protecting their families against infections too. Those who found it difficult to upload their files received help from younger family members. They asked us to improve the platform and create a user-friendlier environement. This was not a reasong to recommend against the platform. |
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Please elaborate what readers can learn and how this digital platform can be adopted in other healthcare systems. |
Readers can learn that (1) Greek patients have the knowledge to complete a questionnaire about their characteristics, including disease and treatments, (2) Welcome innovation, if this offers them benefits, such as travel, costs and infection reduction and a well organized medical file, which helps their communication with oncologist and all the other physicians for their cancer supportive care. Adoption of a digital platform in other healthcare systems depends on different culture and medical systems of other countries. Educational programs can empower patients to accept and use such innovations in health care. |
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I would suggest another title that also emphasises the early feasibility study. |
We agree and have added the term early feasibility stage study to the title. Thank you! |
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The discussion should include that future studies are needed and should point out how such studies should be designed (e.g., more patients and multicentric). |
We have included information about the SymbIASIS program, which offered CureCancer the opportunity to connect with Hopsitals, and have included how we record patients results when they complete a questionnaire. About SymbIASIS, please you may read information at the homepage of CureCancer. |
Round 2
Reviewer 3 Report
The authors answered my questions but not significant improvement of the manuscript was detected. There were even several language flaws in the answers. However, I have no objections for publication as this is now correctly termed as "Early-stage feasibility study".
Author Response
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Reviewer #3 |
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Comment |
Author response |
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The authors answered my questions, but not significant improvement of the manuscript was detected. |
We tried to re-form the manuscript and further clarify the aim of the study, and improve the text, methods, and discussion, as well as the next steps. |
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There were even several language flaws in the answers. |
Thank you for the comment. The manuscript was re-read, by an English fluent colleague and we corrected some grammatical and style errors. If you feel that we need more advanced English language editing, we can ask for a professional office. |
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However, I have no objections for publication as this is now correctly termed as "Early-stage feasibility study". |
Thank you for your kindness. |
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