Beyond single support calls: Efficacy of follow-up callbacks for dementia caregivers using the Alzheimer’s association helpline

Nancy A. Hodgson; Sonia Talwar; Subhash Aryal; Kerry Finegan; Sam Fazio

doi:10.1371/journal.pone.0333535

Peer Review History

Original SubmissionOctober 7, 2024
27 Feb 2025 Decision Letter - Vineet Gupta, Editor Dear Dr. Hodgson, Thank you for submitting your manuscript to PLOS ONE. After careful consideration, we feel that it has merit but does not fully meet PLOS ONE’s publication criteria as it currently stands. Therefore, we invite you to submit a revised version of the manuscript that addresses the points raised during the review process. Please submit your revised manuscript by Apr 13 2025 11:59PM. If you will need more time than this to complete your revisions, please reply to this message or contact the journal office at plosone@plos.org . When you're ready to submit your revision, log on to https://www.editorialmanager.com/pone/ and select the 'Submissions Needing Revision' folder to locate your manuscript file. A rebuttal letter that responds to each point raised by the academic editor and reviewer(s). You should upload this letter as a separate file labeled 'Response to Reviewers'. 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Please provide additional details regarding how this consent was documented and witnessed, and state whether this was approved by the IRB 3. Please note that funding information should not appear in any section or other areas of your manuscript. We will only publish funding information present in the Funding Statement section of the online submission form. Please remove any funding-related text from the manuscript. 4. Thank you for stating the following financial disclosure: “NH, ST, and SA performed research and analysis that was funded by the Alzheimer's Association (https://www.alz.org/). KF and SF are employees of the Alzheimer's Association and are co-authors on this manuscript. KF and SF worked with NH to design and execute this study. KF assisted with data collection.” Please state what role the funders took in the study. 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You also have the option of uploading the data as Supporting Information files, but we would recommend depositing data directly to a data repository if possible. We will update your Data Availability statement on your behalf to reflect the information you provide. 7. Please include your full ethics statement in the ‘Methods’ section of your manuscript file. In your statement, please include the full name of the IRB or ethics committee who approved or waived your study, as well as whether or not you obtained informed written or verbal consent. If consent was waived for your study, please include this information in your statement as well. Additional Editor Comments: See above [Note: HTML markup is below. Please do not edit.] Reviewers' comments: Reviewer's Responses to Questions Comments to the Author 1. Is the manuscript technically sound, and do the data support the conclusions? Reviewer #1: Yes Reviewer #2: Partly ******** 2. Has the statistical analysis been performed appropriately and rigorously? -->?> Reviewer #1: Yes Reviewer #2: Yes ****** 3. Have the authors made all data underlying the findings in their manuscript fully available??> The PLOS Data policy Reviewer #1: No Reviewer #2: No ****** 4. Is the manuscript presented in an intelligible fashion and written in standard English??> Reviewer #1: Yes Reviewer #2: Yes ******** Reviewer #1: As the population of those living with dementia increases in size, learning how to effectively support caregivers is worthwhile. In this manuscript, Hodgson et al. explore the value in offering multiple phone consultations to those caregivers of persons living with dementia. The authors collect data on a large sample of caregivers. The main measure of interest is self-efficacy ratings for managing negative feelings (PROMIS T-score): Low scores are associated with accepting more than one consultation, and on average consultations coincide with an improvement in those self-efficacy ratings. Population trends (more people living with dementia) make this a reasonably timely report, and, I imagine, the report is of adequate interest to the readership of PLoS ONE. I have comments that I hope will improve the manuscript, listed in roughly the same order as the manuscript. The possibility of attrition bias deserves the most attention (see #5 and #6). It seems inevitable for this experimental design coupled with the described recruitment method. There are probably artful future-oriented ways to highlight this for the reader (What would next steps be, given the present findings?) (1) Exclusions are (or seem) intuitive, but it would be nice to know how many were excluded, and/or to “operationalized/define “crisis situation” and “frequent repeat caller” a bit more. If this is left to the discretion of the Helpline agent, then none of that information may be available, but a sentence/phrase with that explanation could be added to the manuscript. (2) The first paragraph of the discussion could probably be tightened up a bit: “A score of 40 is 1 standard deviation lower than US general population and score of 60 is 1 SD higher than the US general population.” is redundant with the immediately preceding sentence and could just be removed. The subsequent three sentences, “Callers who requested three calls […]” could be condensed something like this: “Compared to that normative data, out caregivers had below-average emotional self-efficacy, especially when requesting multiple consultations (one: 47.1, two: 44.5, three: 39.4).” (3) “Our first finding indicates that those who later requested additional calls had the lowest levels of self-efficacy in managing emotions at baseline, indicating the highest level of need.” My sense is that “highest level of need” extends beyond that PROMIS can measure. There is more to “need” than emotional self-efficacy, after all. Something like “[…] suggesting an elevated level of need” might better capture the scope of the present work. (4) This paragraph is more of a result than a discussion; the authors should consider moving to another section, or abbreviating or eliminating it, since the information it contains is a retelling of the contents of Table 3: “Five items from the PROMIS Self-Efficacy measure were significant in those who had one or two care consultations. The items “I can handle negative feelings”, “I can find ways to manage stress”, “I can avoid feeling discouraged stress”, and “I can keep emotional distress from interfering with things” were significantly improved (p <0.01) in those who had one care consultation. The item “I can find ways to manage stress” was significantly improved from baseline in those who had two care consultations” (p<0.01).” (5) “This study has several limitations. First […]” The authors name only one limitation before proceeding to the next paragraph (“Despite these limitations […]”). …did the authors intend for the later paragraph (“Practice recommendations cannot […]”) to be a second limitation? Another one would be the loss-to-follow-up of almost half the sample (2503 with initial consultation, 1375 of those engaging with the call two weeks later). Another would be that those engaging with subsequent calls may be a self-selected group of people who find benefit from the consultation calls. (6) “Our second finding suggests that callers benefited from all calls […]” are the authors sure they want to commit to all? Every single one? What if some of those 2503 didn’t value the call, and that’s why they were lost to follow-up? Reviewer #2: The authors have taken up a socially important, cognitively original topic that can supplement an important area of ignorance in the field of designing psychoeducational and support activities for families of people with dementia (PLWD). Thus, the research undertaken is part of an important discourse on the needs visible in the healthcare system and ensuring the psychological well-being of caregivers with mental disorders. The manuscript submitted for evaluation provides interesting data that have application value and can be used to design systemic solutions. In my opinion, however, the text requires the introduction of necessary changes that can improve its quality. First of all, I propose expanding the theoretical background. Although there are few comparable studies, it would be worthwhile to outline in a more exhaustive way the difficult and problematic situations that result from the specificity of dementia (PLWD) in the introduction. It would be good to capture the specificity of the functioning of patients and the difficulties experienced by their families. It seems important to me to outline, at least in the theoretical layer, other possible predictors of the effectiveness of using the offered telephone help - those that could be attempted to be identified in future studies. I believe that qualitative data, consisting of statements from people using the indicated help, would also contribute a lot. They could better illustrate the problem. The methodological part requires some additions. The selection of the sample and presentation of the results do not raise any objections. It seems to me that the PROMIS Self-Efficacy inManaging Emotions Short Form 8A research tool has been described quite poorly and in this form it is difficult to draw conclusions about its reliability. The authors have correctly identified the limitations of the research. However, I think that the discussion of the results is worth expanding (after previously expanding the theoretical part). ******** what does this mean? ). If published, this will include your full peer review and any attached files. If you choose “no”, your identity will remain anonymous but your review may still be made public. Do you want your identity to be public for this peer review? For information about this choice, including consent withdrawal, please see our Privacy Policy Reviewer #1: No Reviewer #2: No ******** [NOTE: If reviewer comments were submitted as an attachment file, they will be attached to this email and accessible via the submission site. Please log into your account, locate the manuscript record, and check for the action link "View Attachments". If this link does not appear, there are no attachment files.] While revising your submission, please upload your figure files to the Preflight Analysis and Conversion Engine (PACE) digital diagnostic tool, https://pacev2.apexcovantage.com/ . PACE helps ensure that figures meet PLOS requirements. To use PACE, you must first register as a user. Registration is free. Then, login and navigate to the UPLOAD tab, where you will find detailed instructions on how to use the tool. If you encounter any issues or have any questions when using PACE, please email PLOS at figures@plos.org . Please note that Supporting Information files do not need this step. https://doi.org/10.1371/journal.pone.0333535.r001
Revision 1
13 Apr 2025 Author Response Editor review: 1. In the ethics statement in the Methods, you have specified that verbal consent was obtained. Please provide additional details regarding how this consent was documented and witnessed, and state whether this was approved by the IRB. Verbal consent was documented by Helpline agents in their Personify system. This protocol was approved by IRB. This has been amended as suggested in the Methods section. 2. Please note that funding information should not appear in any section or other areas of your manuscript. We will only publish funding information present in the Funding Statement section of the online submission form. Please remove any funding-related text from the manuscript. No funding-related text appears in the manuscript. 3. Please state what role the funders took in the study. (Funding Statement) As we now note the funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. The funder provided support in the form of salaries for coauthors, but did not have any additional role in the study design, data collection and analysis, decision to publish, or preparation of the manuscript. The specific roles of these authors are articulated in the ‘author contributions’ section. We also provide the revised Competing Interests Statement in the Manuscript. We confirm that this commercial affiliation does not alter our adherence to all PLOS ONE policies on sharing data and materials. 4. We have uploaded the minimal anonymized data set necessary to replicate study findings. 5. Please include your full ethics statement in the ‘Methods’ section of your manuscript file. In your statement, please include the full name of the IRB or ethics committee who approved or waived your study, as well as whether or not you obtained informed written or verbal consent. If consent was waived for your study, please include this information in your statement as well. Thank you. This has been amended. Reviewer #1: Exclusions are (or seem) intuitive, but it would be nice to know how many were excluded, and/or to “operationalized/define “crisis situation” and “frequent repeat caller” a bit more. If this is left to the discretion of the Helpline agent, then none of that information may be available, but a sentence/phrase with that explanation could be added to the manuscript. Thank you for this suggestion. The number of participants excluded was not documented by the Alzheimer’s Association Helpline agents. Crisis callers and frequent repeat callers have now been defined. The first paragraph of the discussion could probably be tightened up a bit: “A score of 40 is 1 standard deviation lower than US general population and score of 60 is 1 SD higher than the US general population.” is redundant with the immediately preceding sentence and could just be removed. The subsequent three sentences, “Callers who requested three calls […]” could be condensed something like this: “Compared to that normative data, out caregivers had below-average emotional self-efficacy, especially when requesting multiple consultations (one: 47.1, two: 44.5, three: 39.4).” We appreciate this comment and have amended this section. “Our first finding indicates that those who later requested additional calls had the lowest levels of self-efficacy in managing emotions at baseline, indicating the highest level of need.” My sense is that “highest level of need” extends beyond that PROMIS can measure. There is more to “need” than emotional self-efficacy, after all. Something like “[…] suggesting an elevated level of need” might better capture the scope of the present work. Thank you. This has been updated with the suggested language. This paragraph is more of a result than a discussion; the authors should consider moving to another section, or abbreviating or eliminating it, since the information it contains is a retelling of the contents of Table 3:“Five items from the PROMIS Self-Efficacy measure were significant in those who had one or two care consultations. The items “I can handle negative feelings”, “I can find ways to manage stress”, “I can avoid feeling discouraged stress”, and “I can keep emotional distress from interfering with things” were significantly improved (p <0.01) in those who had one care consultation. The item “I can find ways to manage stress” was significantly improved from baseline in those who had two care consultations” (p<0.01).” Thank you. This has been moved to Results section and briefly summarized in the Discussion section. This study has several limitations. First […]” The authors name only one limitation before proceeding to the next paragraph (“Despite these limitations […]”). …did the authors intend for the later paragraph (“Practice recommendations cannot […]”) to be a second limitation? Another one would be the loss-to-follow-up of almost half the sample (2503 with initial consultation, 1375 of those engaging with the call two weeks later). Another would be that those engaging with subsequent calls may be a self-selected group of people who find benefit from the consultation calls. Thank you. The Limitations section has been updated with this information “Our second finding suggests that callers benefited from all calls […]” are the authors sure they want to commit to all? Every single one? What if some of those 2503 didn’t value the call, and that’s why they were lost to follow-up? Thank you. This has been amended. Reviewer 2: First of all, I propose expanding the theoretical background. Although there are few comparable studies, it would be worthwhile to outline in a more exhaustive way the difficult and problematic situations that result from the specificity of dementia (PLWD) in the introduction. Thank you. We now provide further elaboration of the specific difficulties inherent in dementia caregiving. It would be good to capture the specificity of the functioning of patients and the difficulties experienced by their families. It seems important to me to outline other possible predictors of the effectiveness of using the offered telephone help - those that could be attempted to be identified in future studies. Thank for your this helpful comment.We have added a discussion of other possible predictors to our concluding statements on future research. I believe that qualitative data, consisting of statements from people using the indicated help, would also contribute a lot. They could better illustrate the problem. Unfortunately, we do not currently have any recorded/documented qualitative data. We have noted this in the manuscript as a limitation. The methodological part requires some additions. The selection of the sample and presentation of the results do not raise any objections. It seems to me that the PROMIS Self-Efficacy in Managing Emotions Short Form 8A research tool has been described quite poorly and in this form it is difficult to draw conclusions about its reliability. Thank you. More information has been added about the PROMIS instrument and its reliability. There are possibly not a lot of studies about the non-inferiority of training methods like yours that extend the findings to outcomes for clients eg CG and PLWD, but rater stop at measuring knowledge and confidence etc. This is worth highlighting here somewhere also or in the discussion perhaps.? Similar to our comment above, we now highlight how this study protocol will evaluate outcomes beyond typical training outcomes of “confidence” and “knowledge”. The authors have correctly identified the limitations of the research. However, I think that the discussion of the results is worth expanding We appreciate this comment, and we have expanded our discussion of results. Attachments Attachment Submitted filename: Response to reviewers.docx https://doi.org/10.1371/journal.pone.0333535.r002
19 May 2025 Decision Letter - Vineet Gupta, Editor Dear Dr. Hodgson, --> -->-->Authors have addressed reviewer's concerns. -->-->#However, this work was published as an abstract in December 2023 https://alz-journals.onlinelibrary.wiley.com/doi/epdf/10.1002/alz.082552 that needs to be duly acknowledged and cited as feasible. Even though it was your own work and presented in part- missed that important piece may be misconstrued as omission. File is attached for your reference. -->--> -->-->#Also, in the abstract 2504 participants were included that is 2503 in this manuscript- any reason for this discrepancy?-->--> -->-->#Abstract can include more information in methods section (some mention of statistical analyses or anything relevant in methodology)  and results (Additional relevant information). ?> Please submit your revised manuscript by Jul 03 2025 11:59PM. If you will need more time than this to complete your revisions, please reply to this message or contact the journal office at plosone@plos.org . When you're ready to submit your revision, log on to https://www.editorialmanager.com/pone/ and select the 'Submissions Needing Revision' folder to locate your manuscript file. A rebuttal letter that responds to each point raised by the academic editor and reviewer(s). You should upload this letter as a separate file labeled 'Response to Reviewers'. A marked-up copy of your manuscript that highlights changes made to the original version. You should upload this as a separate file labeled 'Revised Manuscript with Track Changes'. An unmarked version of your revised paper without tracked changes. You should upload this as a separate file labeled 'Manuscript'. If applicable, we recommend that you deposit your laboratory protocols in protocols.io to enhance the reproducibility of your results. Protocols.io assigns your protocol its own identifier (DOI) so that it can be cited independently in the future. For instructions see: https://journals.plos.org/plosone/s/submission-guidelines#loc-laboratory-protocols . Additionally, PLOS ONE offers an option for publishing peer-reviewed Lab Protocol articles, which describe protocols hosted on protocols.io. Read more information on sharing protocols at https://plos.org/protocols?utm_medium=editorial-email&utm_source=authorletters&utm_campaign=protocols . We look forward to receiving your revised manuscript. Kind regards, Vineet Gupta, MD, FACP, SFHM, CHCQM Academic Editor PLOS ONE Journal Requirements: Please review your reference list to ensure that it is complete and correct. If you have cited papers that have been retracted, please include the rationale for doing so in the manuscript text, or remove these references and replace them with relevant current references. Any changes to the reference list should be mentioned in the rebuttal letter that accompanies your revised manuscript. If you need to cite a retracted article, indicate the article’s retracted status in the References list and also include a citation and full reference for the retraction notice. [Note: HTML markup is below. Please do not edit.] Reviewers' comments: Reviewer's Responses to Questions Comments to the Author Reviewer #2: All comments have been addressed ******** 2. Is the manuscript technically sound, and do the data support the conclusions??> Reviewer #2: Yes ****** 3. Has the statistical analysis been performed appropriately and rigorously? -->?> Reviewer #2: Yes ****** 4. Have the authors made all data underlying the findings in their manuscript fully available??> The PLOS Data policy Reviewer #2: Yes ****** 5. Is the manuscript presented in an intelligible fashion and written in standard English??> Reviewer #2: Yes ****** Reviewer #2: Dear Editors, First of all, I would like to note that the author's article with the same title has been published in the meantime in the journal Alzheimer's & Dementia 19(S19),December 2023 DOI: 10.1002/alz.082552. I have not had the opportunity to compare the content (from the abstract I conclude that they may concern exactly the same study), but the fact that a text with the same title exists is the basis for changing the title. The authors have addressed my earlier comments and in this respect I accept the changes. ****** what does this mean? ). If published, this will include your full peer review and any attached files. If you choose “no”, your identity will remain anonymous but your review may still be made public. Do you want your identity to be public for this peer review? For information about this choice, including consent withdrawal, please see our Privacy Policy Reviewer #2: No ******** [NOTE: If reviewer comments were submitted as an attachment file, they will be attached to this email and accessible via the submission site. Please log into your account, locate the manuscript record, and check for the action link "View Attachments". If this link does not appear, there are no attachment files.] While revising your submission, please upload your figure files to the Preflight Analysis and Conversion Engine (PACE) digital diagnostic tool, https://pacev2.apexcovantage.com/ . PACE helps ensure that figures meet PLOS requirements. To use PACE, you must first register as a user. Registration is free. Then, login and navigate to the UPLOAD tab, where you will find detailed instructions on how to use the tool. If you encounter any issues or have any questions when using PACE, please email PLOS at figures@plos.org Attachments Attachment Submitted filename: Alzheimers article .pdf https://doi.org/10.1371/journal.pone.0333535.r003
Revision 2
14 Aug 2025 Author Response Please find our response to editor and reviewer comments below: This work was published as an abstract in December 2023 https://alz-journals.onlinelibrary.wiley.com/doi/epdf/10.1002/alz.082552 that needs to be duly acknowledged and cited as feasible. Even though it was your own work and presented in part- missed that important piece may be misconstrued as omission. File is attached for your reference. Thank you for your attention to this. We presented early data from this study in 2023. We did not use the full dataset and these were preliminary findings presented as an abstract. Also, in the abstract 2504 participants were included that is 2503 in this manuscript- any reason for this discrepancy? We appreciate your attention to this detail. The work presented in the abstract was preliminary and did not include the final dataset. For the final analysis, we identified rules for duplicates and data missingness and this changed the number of included participants in this final analysis. Abstract can include more information in methods section (some mention of statistical analyses or anything relevant in methodology) and results (Additional relevant information). Thank you for this feedback. We have updated the abstract with additional information in these sections. Please review your reference list to ensure that it is complete and correct. We have reviewed the reference list. We removed a citation because it was no longer cited in the text. First of all, I would like to note that the author's article with the same title has been published in the meantime in the journal Alzheimer's & Dementia 19(S19),December 2023 DOI: 10.1002/alz.082552. I have not had the opportunity to compare the content (from the abstract I conclude that they may concern exactly the same study), but the fact that a text with the same title exists is the basis for changing the title. Change title (minor change) Thank you for this recommendation. We have now changed the title to “Beyond Single Support Calls: Efficacy of Follow-Up Callbacks for Dementia Caregivers Using the Alzheimer's Association Helpline”. Attachments Attachment Submitted filename: Reviewer response.docx https://doi.org/10.1371/journal.pone.0333535.r004
16 Sep 2025 Decision Letter - Vineet Gupta, Editor Beyond Single Support Calls: Efficacy of Follow-Up Callbacks for Dementia Caregivers Using the Alzheimer's Association Helpline PONE-D-24-41264R2 Dear Dr. Hodgson, We’re pleased to inform you that your manuscript has been judged scientifically suitable for publication and will be formally accepted for publication once it meets all outstanding technical requirements. Within one week, you’ll receive an e-mail detailing the required amendments. When these have been addressed, you’ll receive a formal acceptance letter and your manuscript will be scheduled for publication. An invoice will be generated when your article is formally accepted. Please note, if your institution has a publishing partnership with PLOS and your article meets the relevant criteria, all or part of your publication costs will be covered. Please make sure your user information is up-to-date by logging into Editorial Manager at Editorial Manager® and clicking the ‘Update My Information' link at the top of the page. For questions related to billing, please contact billing support . If your institution or institutions have a press office, please notify them about your upcoming paper to help maximize its impact. If they’ll be preparing press materials, please inform our press team as soon as possible -- no later than 48 hours after receiving the formal acceptance. Your manuscript will remain under strict press embargo until 2 pm Eastern Time on the date of publication. For more information, please contact onepress@plos.org. Kind regards, Vineet Gupta, MD, FACP, SFHM Academic Editor PLOS ONE Additional Editor Comments (optional): Reviewers' comments: https://doi.org/10.1371/journal.pone.0333535.r005
Formally Accepted
Acceptance Letter - Vineet Gupta, Editor PONE-D-24-41264R2 PLOS ONE Dear Dr. Hodgson, I'm pleased to inform you that your manuscript has been deemed suitable for publication in PLOS ONE. Congratulations! Your manuscript is now being handed over to our production team. At this stage, our production department will prepare your paper for publication. This includes ensuring the following: * All references, tables, and figures are properly cited * All relevant supporting information is included in the manuscript submission, * There are no issues that prevent the paper from being properly typeset You will receive further instructions from the production team, including instructions on how to review your proof when it is ready. Please keep in mind that we are working through a large volume of accepted articles, so please give us a few days to review your paper and let you know the next and final steps. Lastly, if your institution or institutions have a press office, please let them know about your upcoming paper now to help maximize its impact. If they'll be preparing press materials, please inform our press team within the next 48 hours. Your manuscript will remain under strict press embargo until 2 pm Eastern Time on the date of publication. For more information, please contact onepress@plos.org. You will receive an invoice from PLOS for your publication fee after your manuscript has reached the completed accept phase. If you receive an email requesting payment before acceptance or for any other service, this may be a phishing scheme. Learn how to identify phishing emails and protect your accounts at https://explore.plos.org/phishing. If we can help with anything else, please email us at customercare@plos.org. Thank you for submitting your work to PLOS ONE and supporting open access. Kind regards, PLOS ONE Editorial Office Staff on behalf of Dr Vineet Gupta Academic Editor PLOS ONE https://doi.org/10.1371/journal.pone.0333535.r006

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