Fear of Cancer Recurrence and Fear of Cancer Progression, Digital Resource Engagement and Health Literacy: A Review
, Hisham Mehanna 2 and Gozde Ozakinci 1,*,â€
on behalf of PETNECK2 Research Team
Round 1
Reviewer 1 Report
Comments and Suggestions for AuthorsThis manuscript is very well organized and written. Your topic is very important and confirms the gap in research in this area.
The main objectives of this review are stated on pg 3, beginning with line 157 and ending on line 159.
1.Explore the relationship between FCR/FOP and uptake and engagement with digital resources .
2. Explore the relationship between FCR/FOP, health literacy and digital health literacy.
This topic is very relevant given the current direction of telehealth, the use of patient portals, and other apps. It is also relevant because FCR/FOP are very real issues. Having worked on and accrued patients for a study dealing with this topic, patients need different methods of obtaining resources and help. If digital help is offered and the patient is interested but doesn’t have the digital literacy to access the resource, it becomes a barrier and a missed opportunity. The authors actually address this in lines 124-127 in that the digital technologies cannot be addressed in isolation but needs to be addressed in light of the emotional impact of cancer on the patient in using the digital technologies. So yes, this topic is very relevant.
While I have not read every piece of literature on the subject, this review is looking below the usual “does it work/not work?” While those are important questions, we need to know the level of patient health and digital literacy when asking patients to participate in studies using technology. When creating written patient education materials, we aim for a certain grade reading level to ensure the materials can be understood. The same needs to be applied to patient digital platforms and the provided resources. One may have great resources but if the platform is so complicated the patient cannot use it, it is of little to no value. The authors use a term on pg 3, line 120 – ‘digital poverty’ which is good.
I thought the methods were clear. Given their goal, they may not have obtained the articles they did if they narrowed the search criteria.
I think the authors accomplished this in the results and in the discussion section.
The references are appropriate and most are within 5 years.
The tables and figures are clear and easy to follow as well as clear descriptions in the text.
Author Response
We thank the reviewer for their very positive evaluation of our review and highlighting its importance. There were no points raised for us to respond to so we have not made any specific changes.
Reviewer 2 Report
Comments and Suggestions for AuthorsThe study explored the relationship between FCR/FOP and participation in digital resources and health literacy popularization. However, the introduction part of the article still lacks explanation and elaboration of the significance of FCR/FOP, and its importance is not prominent. What role does it play in clinical work? Secondly, the number of studies included in this paper is too small, resulting in insufficient feasibility. In addition, is there a standardized way to evaluate FCR/FOP? FCR/FOP changes during treatment. How to evaluate or record such changes? What impact does it have on the results of the study?
Author Response
We thank the reviewer for their helpful comments. Please see the attachment for our response to their queries.
Author Response File: 
Author Response.pdf
Reviewer 3 Report
Comments and Suggestions for AuthorsFear of cancer recurrence and fear of cancer progression, digital resource engagement and health literacy: a scoping review
Unfortunately, throughout the structure, I think the logical presentation is not complete enough, especially in the case of the correlation between the variables and the significance of the study, which is more of a description of the individual variables. Even the last paragraph is inconsistent with the abstract/title's
1. “Increased demand for access to health care means that the current health care system is unsustainable” is a questionable statement. Increased demand does not directly lead to the conclusion that the current health care system is unsustainable. Rather, it is the inability of the current healthcare system to address the problems caused by increased demand, which should be the basis for further extrapolation.
2. there is inconsistent use of digital literacy and other related terms.
3. why was digital literacy not selected as an outcome indicator, but rather as an outcome What is its separate dimension of health literacy?
4. “Levels of health literacy and digital literacy vary by population group” I do not see “vary” in the subsequent list of evidence. I do not see a 'difference' in the subsequent list of evidence and it seems that the authors are describing low levels of health literacy and digital literacy. 5.
5. Digital poverty is not well supported by evidence and its logic is not well developed. What is the point of mentioning the variable here? What is the significance of mentioning the variable here? What is its relationship to the key indicators?
6. emotional experience is a large set and this paper does not demonstrate the specificity of cancer recurrence Fear and fear of disease progression.
Methods and results:
1. why limit to adults and untreated patients?
2. L196 Why only FCR?
3. L205 What exactly does “recent years” mean?
4. what is the definition of “incorrect type of publication”?
5. The trilinear table needs further standardization
6. what is the relationship between FCR/FOP and participation in digital resources? We can only see statements related to FCR under this heading.
7. no studies focusing on digital health literacy and FCR/FOP were found when two of the four key indicators were Results inconclusive?
Comments on the Quality of English Language
No apparent language problems, except for a few specialized terms that need to be standardized
Author Response
Please see attached response document.
Author Response File: Author Response.pdf
Reviewer 4 Report
Comments and Suggestions for AuthorsThis paper from Kenny-Jones et al. investigates the state-of-the-art of current literature about health literacy, and its correlation with Fear of Cancer (FoC) and Fear of Cancer Progression (FoCP). The work has many merits, as it investigates a relatively new filed. However, there are some points that I believe, once addressed, would improve the overall result.
1) Introduction: The introduction is quite comprehensive, but is very focused on the digital literacy aspect. I believe that expanding on the potential causes of FoC/FoCP would give more insights to the reader, as patients not only fear cancer itself, but also its potential destruent effects on day-to-day life. For instance, the Authors could mention the comprehensive impact of Cancer on employement status (Cfr. https://pubmed.ncbi.nlm.nih.gov/36900304/), on Sport activites (Cfr. https://pubmed.ncbi.nlm.nih.gov/37157882/), on Sexual functions (Cfr. https://pubmed.ncbi.nlm.nih.gov/21508174/) and on overall Quality of Life: (Cfr. https://pubmed.ncbi.nlm.nih.gov/22895961/).
2) The methodology and search strings appear correct. However, there is no rationale for limiting the research on English language only.
3) Directly from point 2, only one paper was found in a language different than English. I believe that, in an era when free and relaible translation tools are available to the the world as a whole, such language-based exclusion should take no place.
4) Fig. 1 and 2 are displayed twice in the document. I believe they should belong only to the results, and not the methods section.
Overall, I believe it is a nice work, as both the discussion and conclusions are sound, coherent, and I believe it would make for a nice publication paper once the aforementioned points are addressed.
Author Response
Reviewer 4 comments and responses
This paper from Kenny-Jones et al. investigates the state-of-the-art of current literature about health literacy, and its correlation with Fear of Cancer (FoC) and Fear of Cancer Progression (FoCP). The work has many merits, as it investigates a relatively new filed. However, there are some points that I believe, once addressed, would improve the overall result.
We thank the reviewer for their positive comment about the merit of our review.
1.Introduction: The introduction is quite comprehensive, but is very focused on the digital literacy aspect. I believe that expanding on the potential causes of FoC/FoCP would give more insights to the reader, as patients not only fear cancer itself, but also its potential destruent effects on day-to-day life. For instance, the Authors could mention the comprehensive impact of Cancer on employement status (Cfr. https://pubmed.ncbi.nlm.nih.gov/36900304/), on Sport activites (Cfr. https://pubmed.ncbi.nlm.nih.gov/37157882/), on Sexual functions (Cfr. https://pubmed.ncbi.nlm.nih.gov/21508174/) and on overall Quality of Life: (Cfr. https://pubmed.ncbi.nlm.nih.gov/22895961/).
Our focus was specifically the fear of cancer recurrence and progression and we do recognise that other aspects of cancer patients’ experience are also very important. We have now added text to recognise that (lines 144) with selected references from the reviewer’s comments.
2) The methodology and search strings appear correct. However, there is no rationale for limiting the research on English language only.
3) Directly from point 2, only one paper was found in a language different than English. I believe that, in an era when free and relaible translation tools are available to the the world as a whole, such language-based exclusion should take no place.
Thank you for these comments (2 & 3). Although we have not limited the searches to English language articles only we had no resources for translation services. However, we are grateful for your suggestion. We have used DeepL to translate the study and approached a German psychologist who is fluent in English to help us with checking that the translation was correct. We were then able to incorporate the article into our review.
4) Fig. 1 and 2 are displayed twice in the document. I believe they should belong only to the results, and not the methods section.
We have realised too late that we have duplicated Figure 2. Thank you for noting that as well. We have moved Figure 1 to Results section as recommended by the reviewer.
Overall, I believe it is a nice work, as both the discussion and conclusions are sound, coherent, and I believe it would make for a nice publication paper once the aforementioned points are addressed.
We thank the Reviewer for their positive conclusion and the value of our review.
Round 2
Reviewer 2 Report
Comments and Suggestions for AuthorsThe authors addressed most of the reviewers' queries, but there is one more problem, although the purpose of this review is not to introduce methods of measuring FCR/FOP. But does FCR/FOP change during the study phase, and will this change affect the conclusion of the study?
Author Response
We thank the reviewer for the opportunity to address their queries.
The reviewer notes: ..., although the purpose of this review is not to introduce methods of measuring FCR/FOP. But does FCR/FOP change during the study phase, and will this change affect the conclusion of the study?
We hope we understand it the query and assume they are referring to the relationship with digital engagement because the other studies were mostly cross-sectional. If that's the case, we are measuring engagement which occurs from baseline to follow-up, but studies found levels of usage was predicted by baseline FCR. There's no way we can know if a change in FCR would affect that throughout the study, because they don't measure engagement again after follow-up as the study is finished.
In terms of the two prospective cohort studies for RQ2, one of those states there was no change over the course of the study and the other one doesn't report those results.
Reviewer 4 Report
Comments and Suggestions for AuthorsAll my comments have been addressed. I have no furhter remarks.
Author Response
Thank you for your comments - we believe our manuscript has been enhanced as a result.
