PONE-D-23-42064"Was my kidney biopsy worth it?" A qualitative phenomenological study of patient experiences and perceived barriers to kidney biopsyPLOS ONE

Dear Dr. Toal,

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 Aug 24 2024 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. 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 you would like to make changes to your financial disclosure, please include your updated statement in your cover letter. Guidelines for resubmitting your figure files are available below the reviewer comments at the end of this letter.

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,

Ankur Shah

Academic Editor

PLOS ONE

Journal requirements:

When submitting your revision, we need you to address these additional requirements.

1. Please ensure that your manuscript meets PLOS ONE's style requirements, including those for file naming. The PLOS ONE style templates can be found at

https://journals.plos.org/plosone/s/file?id=wjVg/PLOSOne_formatting_sample_main_body.pdf and

https://journals.plos.org/plosone/s/file?id=ba62/PLOSOne_formatting_sample_title_authors_affiliations.pdf

2. Thank you for stating the following financial disclosure:

“MT is supported by a research award from the Northern Ireland Kidney Research Fund. This organisation was not involved in the design or conduct of this study.

https://nikidneyresearch.org/”

Please state what role the funders took in the study.  If the funders had no role, please state: "The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript."

If this statement is not correct you must amend it as needed.

Please include this amended Role of Funder statement in your cover letter; we will change the online submission form on your behalf.

3. In the online submission form you indicate that your data is not available for proprietary reasons and have provided a contact point for accessing this data. Please note that your current contact point is a co-author on this manuscript. According to our Data Policy, the contact point must not be an author on the manuscript and must be an institutional contact, ideally not an individual. Please revise your data statement to a non-author institutional point of contact, such as a data access or ethics committee, and send this to us via return email. Please also include contact information for the third party organization, and please include the full citation of where the data can be found.

4. Please amend either the title on the online submission form (via Edit Submission) or the title in the manuscript so that they are identical.

5. Please include captions for your Supporting Information files at the end of your manuscript, and update any in-text citations to match accordingly. Please see our Supporting Information guidelines for more information: http://journals.plos.org/plosone/s/supporting-information.

[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

Reviewer #2: Yes

Reviewer #3: Yes

**********

2. Has the statistical analysis been performed appropriately and rigorously?

Reviewer #1: I Don't Know

Reviewer #2: Yes

Reviewer #3: 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: No

Reviewer #2: Yes

Reviewer #3: 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

Reviewer #2: Yes

Reviewer #3: 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: This study ist about the the physiological (pain of the procedure...) and psychological aspects (stress, anxiety and felt impact of the treatment course...) of kidney biopsy. The kidney biopsy is an invasive, important diagnostic methode in the nephrology. The study is retrospective and includes 10 partecipants, wich undergoes 23 kidney biopsies. There were used questionnaires. There were included patients with CKD and also kidney transplanted patients.

Up to now there are existing only few studies about the physic and psychological impact in patients. This is a very interestning and import argument. Very simple and clear the introducion and objectives of the study. Methode is simple.

The discussion could be more precise:

- Interestning is for example the impact of the age: how is the resilience in elder patients, have elder patients more pain? How do you explain the results

- It is also interestning to investigate the results from patients which the native kidney was biopsied versus these which the transplanted kidney was biopsied. Differed the answers of the questionnaires in the groups? How do you explained?

- It is also interestning to specified in the table the motivation of kidney biopsy: Acute kidney injury (AKI); nephrotic syndrome; autoimmune systemic disease with suspect renal manifestation? How differ the answers in the questionnaire?

- Many patients ondergoes multiple kidney biopsy: How is their resilience, pain, felt impact in treatment course? Are differences in confront to patients which ungergoes only one kidney biopsy?

Reviewer #2: This is an interesting study by Toal et al describing the patient perspective of undergoing a kidney biopsy using a phenomenological approach.

Overall, the methodology is well described and the core elements of the reporting checklist have been adhered to, which are strengths. I appreciate the context that this is a phenomenological approach, which has some strengths and weaknesses. I believe this would be a meaningful contribution to the literature, but I also have some concerns that I hope the authors could address to strengthen the manuscript.

Major concerns:

1) The context for each theme feels limited, and the representative quotes do not appear to fully justify some components of the Discussion. For example, the authors note in the Discussion section that "the individual who reported the most severe pain also described a significant psychological burden resulting from their kidney disease." However, the quotes in the Results section do not sufficiently describe this psychological burden. It would be helpful to add a few more quotes to the results section, perhaps in a Table or in the main body of the paper. This could help add more context for the general reader for each theme and subtheme outlined in the paper.

2) I struggled with some aspects of the discussion and results. In particular, I felt that the purpose of the paper was to describe the patient perspective of undergoing a kidney biopsy. However, there were a few sections that appeared to focus more on the experience of living with kidney failure, and were not necessarily related to receiving a kidney biopsy (for example, the notion of having cramps after football, or losing the ability to play rugby). It would be helpful to either clarify this differentiation more explicitly, or mention in the limitations section that some of the experiences described were related to kidney failure and not necessarily to kidney transplantation.

3) To help the general reader understand the methodology better, please provide more description as to how the qualitative findings were independently verified by an experienced researcher. For example, did the first author and this experienced researcher meet several times to go over the themes and come to consensus? Did the experience qualitative researcher provide asynchronous feedback by email? Did new themes or concepts emerge from these discussions? A fuller description of this approach could help reduce concerns of the undue influence of Dr. Toal's role as a nephrologist who performs kidney biopsy (on a side note, I acknowledge and appreciate that Dr. Toal went to great lengths to describe his position, his own potential biases, and his reflexivity in the methodology section of the paper!)

4) The authors go to great detail to discuss and differential whether biopsies were performed on native or transplant kidneys. However, I did not notice any discussion about whether patient perspectives were similar or different when they received a native or transplant biopsy. From a grounded theory approach, one would assume that these perspectives would be very different. I appreciate that this nuance may not emerge from a phenomenological approach, however, if it did emerge, it would be worth noting. If it did not emerge, please consider describing this in the limitations.

5) Similarly, please provide justification for why the authors chose to use a phenomenological approach over a grounded theory approach. It is reasonable to pursue a phenomenological approach here, but discussing the rationale for choosing this approach would help strengthen the paper.

Minor comments:

1) In the background section, please provide more information on the incidence of kidney biopsies. If I were to just read the paper without any other clinical context, I'm not sure I would understand how big of a problem the authors are trying to tackle.

2) The authors discuss that the findings may have limited generalizability. As this is a qualitative study, please consider discussing transferability instead of generalizability.

3) The authors discuss how their work could help inform equitable access to care. However, it was not clear to me how the authors could link their work to health equity. I did not see a clear delineation of disparities in kidney biopsies, or how this patient perspective could address disparities. I do note that the interview guide asked for ethnicity of participants, however the body of the paper des not mention ethnicity. Please consider including ethnicity data. Please also consider adding a stronger rationale for how the study could potentially improve equitable access, or consider removing this section altogether.

Reviewer #3: Toal et all carried out structure interviews with 11 patients who had undergone 23 kidney biopsies to get a sense of the themes of patient experience. The selection process was purposive, and the sample size, so no way to see if experience of participants who underwent native biopsy different from those who underwent transplant biopsies. A couple issues should be addressed.

1. Authors note the importance of knowing the person who performed the biopsy. But they note that MT as a physician may have influenced their results. How many of the biopsies did MT perform and how might that have influenced the interviews?

2. The psychological effects of the illness don’t seem a direct consequence of the biopsy but a consequence of the diagnosis that grew out of the biopsy. How do the authors tie this in with the biopsy.

3. Can the authors speculate if there would be a difference between those who underwent native kidney biopsies and those who underwent allograft biopsies. Native biopsy patients have no idea what’s happening unless the operator tells them in advance since they’re lying on their stomach.

4. Did any of the 10 suffered untoward consequences like bleeding, hematuria, hematoma after biopsy? How might the experience of those who experienced a complication differ from those who did not? If no one in the study group suffered a complication how generalizable are the findings to those patients?

**********

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: No

Reviewer #2: No

Reviewer #3: Yes: George Bayliss, MD

**********

[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.

'Was my kidney biopsy worth it?' - A qualitative phenomenological study of patient experiences and perceived barriers to kidney biopsy

PONE-D-23-42064R1

Dear Dr. Toal,

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. If you have any questions relating to publication charges, 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,

Ankur Shah

Academic Editor

PLOS ONE

Additional Editor Comments (optional):

Reviewers' comments:

Reviewer's Responses to Questions

Comments to the Author

1. If the authors have adequately addressed your comments raised in a previous round of review and you feel that this manuscript is now acceptable for publication, you may indicate that here to bypass the “Comments to the Author” section, enter your conflict of interest statement in the “Confidential to Editor” section, and submit your "Accept" recommendation.

Reviewer #1: All comments have been addressed

Reviewer #3: All comments have been addressed

**********

2. 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

Reviewer #3: Yes

**********

3. Has the statistical analysis been performed appropriately and rigorously?

Reviewer #1: N/A

Reviewer #3: Yes

**********

4. 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

Reviewer #3: Yes

**********

5. 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

Reviewer #3: Yes

**********

6. 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: Manuscript Number: PONE-D-23-42064R1

Manuscript Title: 'Was my kidney biopsy worth it?' - A qualitative phenomenological study of patient experiences and perceived barriers to kidney biopsy

The suggestions for improvement have been well implemented in the revised version.

The number of kidney biopsies in Scotland and international was added. Ethnicities were included in the description of the collectives.

The proposed aspects were addressed in the discussion: It is clear to the reader that no conclusions can be drawn from this data regarding interpretation in terms of age and gender as the collective is limited in number. It is stated that both second biopsies and biopsies in kidney transplant patients are better tolerated. Probable reasons are also given: Previous experience with invasive investigations results in higher tolerance.

Reviewer #3: The authors have addressed my concerns. Many of my questions couldn't be addressed by the study as designed. So be it. It's still an interesting concept to look at the biopsy from the patient's perspective and in the perspective the illness. Several participants had native biopsies followed by biopsies. I'd love to know how their biopsy changed from a diagnostic procedure as they lost kidney function to one post-transplant. One other question that might be relevant is whether the transplant biopsies were done for cause or whether they were protocol biopsies for surveillance.

**********

7. 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: No

Reviewer #3: Yes: George Bayliss, MD

**********