“This is not my body”: Therapeutic experiences and post-treatment health of people with rifampicin-resistant tuberculosis

Marian Loveday; Sindisiwe Hlangu; Lee-Megan Larkan; Helen Cox; Johnny Daniels; Erika Mohr-Holland; Jennifer Furin

doi:10.1371/journal.pone.0251482

Peer Review History

Original SubmissionJanuary 22, 2021
22 Mar 2021 Decision Letter - Richard John Lessells, Editor PONE-D-21-02389 "This is not my body:" Therapeutic Experiences and Post-Treatment health of people with rifampicin-resistant tuberculosis PLOS ONE Dear Dr. Furin, 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. Sorry that it has taken this long to get a decision to you. I found it difficult to get reviewers for this paper - several people declined because they have collaborated closely with one or more of the authors. I would ask you to address the reviewer’s comments, particularly the request for more details of the sampling strategy, recruitment process etc. In addition to the reviewer’s comments I have a couple of other comments that I would ask you to consider: I couldn’t see the SRQR or COREQ checklist for reporting of qualitative research. Please could you ensure that reporting is in line with one or other, and that a completed checklist is submitted with the revised manuscript. Please explain clearly in the manuscript when the interviews took place It seems that all participants were hospitalised initially for treatment. When addressing the reviewer’s comment about sampling strategy, please clarify whether or not this was a specific inclusion criterion. It seems that recruitment took place over a period when some people with RR-TB/MDR-TB would have been treated on an outpatient basis from the start of treatment, so if you intentionally only recruited people that were hospitalised this should be explicit Please submit your revised manuscript by May 06 2021 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. Please include the following items when submitting your revised manuscript: 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. 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We will update your Data Availability statement on your behalf to reflect the information you provide. [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? The manuscript must describe a technically sound piece of scientific research with data that supports the conclusions. Experiments must have been conducted rigorously, with appropriate controls, replication, and sample sizes. The conclusions must be drawn appropriately based on the data presented. Reviewer #1: Yes ******** 2. Has the statistical analysis been performed appropriately and rigorously? Reviewer #1: N/A ****** 3. Have the authors made all data underlying the findings in their manuscript fully available? The PLOS Data policy requires authors to make all data underlying the findings described in their manuscript fully available without restriction, with rare exception (please refer to the Data Availability Statement in the manuscript PDF file). The data should be provided as part of the manuscript or its supporting information, or deposited to a public repository. For example, in addition to summary statistics, the data points behind means, medians and variance measures should be available. If there are restrictions on publicly sharing data—e.g. participant privacy or use of data from a third party—those must be specified. Reviewer #1: Yes ****** 4. Is the manuscript presented in an intelligible fashion and written in standard English? PLOS ONE does not copyedit accepted manuscripts, so the language in submitted articles must be clear, correct, and unambiguous. Any typographical or grammatical errors should be corrected at revision, so please note any specific errors here. Reviewer #1: Yes ****** 5. Review Comments to the Author Please use the space provided to explain your answers to the questions above. You may also include additional comments for the author, including concerns about dual publication, research ethics, or publication ethics. (Please upload your review as an attachment if it exceeds 20,000 characters) Reviewer #1: Thank you so much for the opportunity to review this manuscript. The title is very interesting and the study researched an important area in patient health - post treatment health of patients. I wonder if the authors would consider focusing a large part of the paper on post health experiences, as opposed to including treatment experiences. I realise that this would be a huge change in the contents of the paper and would not object to leaving it as is. Abstract The results section of the abstract is rather long, perhaps some information could be left out (line 65 - 68). Data collection and analysis Line 150 refers to Appendix 1, I could not find this attachment. The sampling method used is rather unclear. Sampling procedures were not clear, for instance how the researchers ended with the 12 participants who were found in the national register, how contact was made, who approached them, where the data was collected, at the study site or at home? in the presentation of the data, under "well-being disrupted", I noticed that the authors present quotations from male participants, and in the next section "returning to well-being", female voices are presented. Was this deliberate, or a coincidence? perhaps both gender may be represented in both sections. Line 236 the sub-heading "side effects" could be rephrased, it seems the issues are physical issues, perhaps a word that may reflect the quotes better. The sentence on line 380 that patients saw others die due to not taking their treatment seems to be the opinion of the authors and not what the patients reported. The cause of death may be from reasons other than not taking their medication, perhaps the authors can rephrase this. Line 415 consider removing the subtitle "additional motivations" Line 471-479. The quotation does not adequately support the assertion that patients did not know where to turn for ongoing support. It seems that patients did know where to go but preferred to be treated at the facility where they had been treated for TB. It also shows the level of trust that they had on their healthcare workers at Greytown Hospital. Perhaps the authors can use the second quotation as support for this assertion. Line 627 please add "I" in the quotation between ...back to where was Discussion Line 662. This sentence is rather long and lost some of its meaning, consider rephrasing. The conclusion and recommendations are very good and feasible. Thank you so much ****** 6. PLOS authors have the option to publish the peer review history of their article (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: Yes:** Dr Boitumelo Seepamore [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.0251482.r001
Revision 1
6 Apr 2021 Author Response Comment Reply I couldn’t see the SRQR or COREQ checklist for reporting of qualitative research. Please could you ensure that reporting is in line with one or other, and that a completed checklist is submitted with the revised manuscript. We have added in the COREQ guideline. Forgive us for this oversight. Please explain clearly in the manuscript when the interviews took place We added that the interviews took place in a private office setting. It seems that all participants were hospitalised initially for treatment. When addressing the reviewer’s comment about sampling strategy, please clarify whether or not this was a specific inclusion criterion. It seems that recruitment took place over a period when some people with RR-TB/MDR-TB would have been treated on an outpatient basis from the start of treatment, so if you intentionally only recruited people that were hospitalised this should be explicit Thank you for this comment. Study participants were recruited from patients treated for RR-TB from 2008 – 2018. During this time, although decentralized care for RR-TB was available in many settings in South Africa, in this study setting, all patients were initially hospitalized, to initiate treatment, before being discharged to the health centers. We have added this information into the manuscript. If there are ethical or legal restrictions on sharing a de-identified data set, please explain them in detail (e.g., data contain potentially identifying or sensitive patient information) and who has imposed them (e.g., an ethics committee). Please also provide contact information for a data access committee, ethics committee, or other institutional body to which data requests may be sent. These are qualitative interviews and they do contain information that could be identifying. Thus we cannot publish them or make the widely available since this could lead to inadvertent recognition of the participants, since the rich quotes and descriptions cannot be fully anyonymized. Our ethics committee is willing to share the data with individuals who request it. Contact can be made by reaching out to Ms Anitha Gupta (email: Anitha.gupta@mrc.ac.za) at the ethics board at the South African Medical Research Council I wonder if the authors would consider focusing a large part of the paper on post health experiences, as opposed to including treatment experiences. I realise that this would be a huge change in the contents of the paper and would not object to leaving it as is. We appreciate this comment from the reviewer. We ourselves were surprised about how often the participants wanted to discuss their treatment experiences, and it was our interpretation that these experiences framed their post-treatment experiences. Thus we felt it was important to present these treatment experiences as well since it would have been difficult to understand the post-treatment experiences without them. We have added a clarifying comment on this which states: “Of note that while the interviews were focused on the post-treatment experiences of the participants, most participants framed such experiences within the context of what happened to them during treatment. Thus we also present information on treatment experiences as a way to frame the post-treatment experiences of the participants.” The results section of the abstract is rather long, perhaps some information could be left out (line 65 - 68). We have removed lines 65-68. Line 150 refers to Appendix 1, I could not find this attachment. We have now included this—our apologies for the omission. The sampling method used is rather unclear. Sampling procedures were not clear, for instance how the researchers ended with the 12 participants who were found in the national register, how contact was made, who approached them, where the data was collected, at the study site or at home? In the section on study design (lines 138-139) we describe how individuals were purposively selected to ensure both males and females were represented and that there was representation across the study period. To further clarify the sampling method, we have included in lines 151-154 how many people were initially contacted, how many declined to be interviewed together with their reasons for declining. In the presentation of the data, under "well-being disrupted", I noticed that the authors present quotations from male participants, and in the next section "returning to well-being", female voices are presented. Was this deliberate, or a coincidence? perhaps both gender may be represented in both sections. This was not done deliberately but was by chance. We appreciate this being pointed out and have changed some of the quotes provided. Line 236 the sub-heading "side effects" could be rephrased, it seems the issues are physical issues, perhaps a word that may reflect the quotes better. We have change this so it now says “Physical Issues” The sentence on line 380 that patients saw others die due to not taking their treatment seems to be the opinion of the authors and not what the patients reported. The cause of death may be from reasons other than not taking their medication, perhaps the authors can rephrase this. We have removed the words “who did not take their treatment” and the sentence now reads that “This was reinforced by hearing about or witnessing the deaths of other patients, events which were experienced as traumatic.” Line 415 consider removing the subtitle "additional motivations" We have removed this subtitle. Line 471-479. The quotation does not adequately support the assertion that patients did not know where to turn for ongoing support. It seems that patients did know where to go but preferred to be treated at the facility where they had been treated for TB. It also shows the level of trust that they had on their healthcare workers at Greytown Hospital. Perhaps the authors can use the second quotation as support for this assertion. We have removed the first quote from the manuscript. Line 627 please add "I" in the quotation between ...back to where was We have added this back in. Line 662. This sentence is rather long and lost some of its meaning, consider rephrasing. We have edited this into two sentences and removed the question form so the paragraph now reads: “This suggests that support groups convened by RR-TB survivors, together with professionals eg. psychologists or social workers could play a role in the management of RR-TB following treatment completion. Such groups could provide an opportunity to discuss the complexities of re-integration into a community after an episode of RR-TB, the fear of getting TB again and the fear of death,” Attachments Attachment Submitted filename: R2RPONE-D-21-02389.docx https://doi.org/10.1371/journal.pone.0251482.r002
28 Apr 2021 Decision Letter - Richard John Lessells, Editor "This is not my body:" Therapeutic Experiences and Post-Treatment health of people with rifampicin-resistant tuberculosis PONE-D-21-02389R1 Dear Dr. Furin, 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 for payment will follow shortly after the formal acceptance. To ensure an efficient process, please log into Editorial Manager at http://www.editorialmanager.com/pone/, click the 'Update My Information' link at the top of the page, and double check that your user information is up-to-date. If you have any billing related questions, please contact our Author Billing department directly at authorbilling@plos.org. 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, Richard John Lessells, BSc, MBChB, MRCP, DTM&H, DipHIVMed, PhD Academic Editor PLOS ONE Additional Editor Comments (optional): Reviewers' comments: https://doi.org/10.1371/journal.pone.0251482.r003
Formally Accepted
30 Apr 2021 Acceptance Letter - Richard John Lessells, Editor PONE-D-21-02389R1 “This is not my body”: Therapeutic Experiences and Post-Treatment Health of People with Rifampicin-Resistant Tuberculosis Dear Dr. Furin: I'm pleased to inform you that your manuscript has been deemed suitable for publication in PLOS ONE. Congratulations! Your manuscript is now with our production department. 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. If we can help with anything else, please email us at plosone@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. Richard John Lessells Academic Editor PLOS ONE https://doi.org/10.1371/journal.pone.0251482.r004

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