Experiences, needs, and preferences for follow-up after stroke perceived by people with stroke and healthcare professionals: A focus group study

Emma K. Kjörk; Carlsson Gunnel; Åsa Lundgren-Nilsson; Katharina S. Sunnerhagen

doi:10.1371/journal.pone.0223338

Peer Review History

Original SubmissionJune 10, 2019
18 Aug 2019 Decision Letter - Lars-Peter Kamolz, Editor PONE-D-19-16388 Experiences, needs, and preferences for follow-up after stroke perceived by people with stroke and healthcare professionals: a focus group study PLOS ONE Dear Mrs Kjörk, 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. ============================== ACADEMIC EDITOR: Please insert comments here and delete this placeholder text when finished. Be sure to: Indicate which changes are required versus recommended for acceptance Address any conflicts between the reviews Provide specific feedback from your evaluation of the manuscript ============================== We would appreciate receiving your revised manuscript by Oct 02 2019 11:59PM. 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The PLOS ONE style templates can be found at http://www.journals.plos.org/plosone/s/file?id=wjVg/PLOSOne_formatting_sample_main_body.pdf and http://www.journals.plos.org/plosone/s/file?id=ba62/PLOSOne_formatting_sample_title_authors_affiliations.pdf 1. Please correct the fist two sentences of the abstract, which seem redundant. 2. Thank you for including your funding statement; "The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript." Please provide an amended Funding Statement that declares all the funding or sources of support received during this specific study (whether external or internal to your organization) as detailed online in our guide for authors at http://journals.plos.org/plosone/s/submit-now. Please state what role the funders took in the study. If any authors received a salary from any of your funders, please state which authors and which funder. 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." Please include your amended statements within your cover letter; we will change the online submission form on your behalf. 3. We note that you have indicated that data from this study are available upon request. PLOS only allows data to be available upon request if there are legal or ethical restrictions on sharing data publicly. For information on unacceptable data access restrictions, please see http://journals.plos.org/plosone/s/data-availability#loc-unacceptable-data-access-restrictions. In your revised cover letter, please address the following prompts: a) 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. b) If there are no restrictions, please upload the minimal anonymized data set necessary to replicate your study findings as either Supporting Information files or to a stable, public repository and provide us with the relevant URLs, DOIs, or accession numbers. Please see http://www.bmj.com/content/340/bmj.c181.long for guidelines on how to de-identify and prepare clinical data for publication. For a list of acceptable repositories, please see http://journals.plos.org/plosone/s/data-availability#loc-recommended-repositories. We will update your Data Availability statement on your behalf to reflect the information you provide. 4. 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: Partly Reviewer #2: Yes ******** 2. Has the statistical analysis been performed appropriately and rigorously? Reviewer #1: I Don't Know Reviewer #2: 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 Reviewer #2: 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 ****** 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: Dear authors, I appappreciate greatly the highly informative study regarding a commonly missed area of interest for the post-stroke care. However, certain modifications should be conducted in order to increase the utilizability of this study: 1- double blinding. The first author participated in both questioning the study participants and in data analysis. There should have been a different analysis team which did not participate in the study to avoid observer bias and other related bias. 2- the cognitive state of the participants and the staff should be elucidated in a more objective way, e.g using Minimental state examination score or any similar semi quantitative cognitive assessment tool as the study is largely related to the cognitive functioning whether in the stroke as a disease or in the mentally-demanding questioning and discussion technique. 3- the multiple and different ethnic groups should be included in the primary study. Reviewer #2: This is an important field of research. Issues with follow up after stroke are well known and there are now a number of studies which have reported on this. However there is limited data from focus group interviews. Shannon et al (Disabil Rehabil 2016) showed that semi structured interviews add value to questionnaire studies where patients have reported no unmet needs. This study reports on focus groups using semi-sructured questions and has highlighted a number of important themes that need further input in a Swedish healthcare setting. Many of these can be extrapolated to other developed country health settings. The main drawback of this study is that the numbers are extremely small and this needs to be highlighted better in the discussion. The findings should be used to inform larger studies to explore the themes identified. In the abstract, the first section on purpose : please remove the first sentence as both sentences say the same thing. ****** 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: MM 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 to be viewed.] 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. 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Revision 1
29 Aug 2019 Author Response Comments to the editor: 1. Please correct the fist two sentences of the abstract, which seem redundant. Thanks, for noticing, it was a mistake. The first sentence is now removed (line 16). 2. Thank you for including your funding statement; "The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript." a. Please provide an amended Funding Statement that declares all the funding or sources of support received during this specific study (whether external or internal to your organization) as detailed online in our guide for authors at http://journals.plos.org/plosone/s/submit-now. Funding statement: This study was supported by grants from the Swedish Stroke Association; the Swedish state under the agreement of the Swedish government and the county councils, the ALF agreement 71980; the Local Research and Development Board for Gothenburg and Södra Bohuslän; the Swedish Heart and Lung Foundation; the Swedish Brain Foundation; unconditional grants from Allergan; Hjalmar Svensson’s Foundation; Swedish NeuroFoundation (Neuro); Rune and Ulla Amlöv’s Foundation; Per-Olof Ahl’s Foundation; and John and Brit Wennerström’s Foundation. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. b. Please state what role the funders took in the study. If any authors received a salary from any of your funders, please state which authors and which funder. 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." "The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript." Please include your amended statements within your cover letter; we will change the online submission form on your behalf. 3. We note that you have indicated that data from this study are available upon request. PLOS only allows data to be available upon request if there are legal or ethical restrictions on sharing data publicly. For information on unacceptable data access restrictions, please see http://journals.plos.org/plosone/s/data-availability#loc-unacceptable-data-access-restrictions. In your revised cover letter, please address the following prompts: a) 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. The data underlying the results of this study are available upon request due to ethical and legal restrictions under the Swedish Secrecy Act 24:8. Interested researchers may contact the authors at ks.sunnerhagen@neuro.gu.se or head of department Jenny Nyström at jenny.nystrom@gu.se for data access requests. According to Swedish regulation, interested researchers may only obtain data after applying and receiving approval from the Swedish Ethical board. b) If there are no restrictions, please upload the minimal anonymized data set necessary to replicate your study findings as either Supporting Information files or to a stable, public repository and provide us with the relevant URLs, DOIs, or accession numbers. Please see http://www.bmj.com/content/340/bmj.c181.long for guidelines on how to de-identify and prepare clinical data for publication. For a list of acceptable repositories, please see http://journals.plos.org/plosone/s/data-availability#loc-recommended-repositories. We will update your Data Availability statement on your behalf to reflect the information you provide. 4. 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.] Not applicable Comments to the reviewers Reviewer #1: Dear authors, I appappreciate greatly the highly informative study regarding a commonly missed area of interest for the post-stroke care. However, certain modifications should be conducted in order to increase the utilizability of this study: 1- double blinding. The first author participated in both questioning the study participants and in data analysis. There should have been a different analysis team which did not participate in the study to avoid observer bias and other related bias. Thanks’ for your comment regarding the analysis of the findings and the potential risk of bias. To avoid bias, this study has followed the COREQ guidelines as required by PLOS ONE and the procedure for focus group methodology described by Krueger. The importance of a systematic procedure and neutrality is emphasized in all steps of the study. To ensure neutrality several actions were applied. The moderator was chosen, in line with guidelines, based on background, training and sensitivity. Further, the researchers’ involvement in both data collection and analyses is part of the procedure and essential for the analysis process. To ascertain all participants views were incorporated in the analysis internal checks were made by the first and second author by reading the transcripts. All points in the results are linked back to the interviews. The first and second author performed the analyses together and finally all authors worked together to ensure neutrality and contextual interpretation. In addition, in qualitative research it is important to be transparent about the preunderstanding of the researchers. Therefore, we described previous experiences in stroke and qualitative research. We hope the method section including the subheading trustworthiness elucidates our intention to make appropriate analysis and avoid bias. We made a change in the following sentence in the method section: Line 148: “Multiple coding and discussion of the developing themes were performed in close cooperation with the first and second author (PhD, OT, woman) to highlight alternative interpretations and decisions. 2- the cognitive state of the participants and the staff should be elucidated in a more objective way, e.g using Minimental state examination score or any similar semi quantitative cognitive assessment tool as the study is largely related to the cognitive functioning whether in the stroke as a disease or in the mentally-demanding questioning and discussion technique. Thanks for your comment. We agree with you that it would have been valuable data, since cognitive functioning might have an impact on participants experiences and discussions. However, in this naturalistic study we did not find it appropriate to extend the inclusion process by adding a cognitive screening. Our attempt was to capture participants’ views and find ranges of opinions to elucidate a complex topic. As long as participants were able to participate in a focus group, we evaluated their opinions as valuable for the discussions. Presence of mild cognitive decline could be present in the sample and is representative for this group of patients. We have added the following sentence in the limitation section: Line 399: “…, accordingly a restriction of the focus group methodology. Further, cognitive functioning was not assessed, which is a limitation since it might have an impact on how they interpreted their experiences and their participation in the discussions. However, the data in present study contributed to a range of opinions to elucidate a complex topic.” 3- the multiple and different ethnic groups should be included in the primary study. Thanks for your comment. It could have been valuable to know more about the participants’ background and characteristics. However, in Sweden, data about ethnicity is generally not systematically collected in studies. In this sample, one participant had another country of birth. The homogeneity regarding ethnicity is a limitation of our study since people with different country of birth is representative for the Swedish population as a whole consisting of people with diverse ethnic background. We added information in the table regarding different country of birth, (page 10) We have added a sentence in the limitation section as follows: Line 403: “The homogeneity regarding ethnicity is a limitation of our study since people with different country of birth is representative for the Swedish population as a whole consisting of people with diverse ethnic background.” Reviewer #2: This is an important field of research. Issues with follow up after stroke are well known and there are now a number of studies which have reported on this. However there is limited data from focus group interviews. Shannon et al (Disabil Rehabil 2016) showed that semi structured interviews add value to questionnaire studies where patients have reported no unmet needs. This study reports on focus groups using semi-structured questions and has highlighted a number of important themes that need further input in a Swedish healthcare setting. Many of these can be extrapolated to other developed country health settings. 1. The main drawback of this study is that the numbers are extremely small and this needs to be highlighted better in the discussion. The findings should be used to inform larger studies to explore the themes identified. Thanks for highlighting the importance of the study and suggestions for improvement. Most certainly larger studies could contribute to further insights and exploration of the themes in this study. We agree this has to be highlighted in the discussion section and have made changes as follows: Line 385: “To further explore the themes identified in this study and to gain insights of the topic in divergent populations, it could be relevant to conduct larger studies” Line 389: “The sample size in the study was small, but was evaluated as adequate for the purpose of this qualitative study in line with accepted recommendations (20)”. 2. In the abstract, the first section on purpose: please remove the first sentence as both sentences say the same thing. Thanks, for noticing, it was a mistake. The first sentence is removed (line 16). Attachments Attachment Submitted filename: Response to reviewers.docx https://doi.org/10.1371/journal.pone.0223338.r002
19 Sep 2019 Decision Letter - Lars-Peter Kamolz, Editor Experiences, needs, and preferences for follow-up after stroke perceived by people with stroke and healthcare professionals: a focus group study PONE-D-19-16388R1 Dear Dr. Kjörk, We are pleased to inform you that your manuscript has been judged scientifically suitable for publication and will be formally accepted for publication once it complies with all outstanding technical requirements. Within one week, you will receive an e-mail containing information on the amendments required prior to publication. When all required modifications have been addressed, you will receive a formal acceptance letter and your manuscript will proceed to our production department and be scheduled for publication. Shortly after the formal acceptance letter is sent, an invoice for payment will follow. 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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 #2: 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 #2: Yes ****** 3. Has the statistical analysis been performed appropriately and rigorously? Reviewer #1: Yes Reviewer #2: N/A ****** 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: (No Response) Reviewer #2: 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: (No Response) Reviewer #2: 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: All comments have been addressed and tackled by the authors. The authors responded in a sound and flexible way Reviewer #2: (No Response) ****** 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: Yes: MM Reviewer #2: Yes: Dr Soma Banerjee MD https://doi.org/10.1371/journal.pone.0223338.r003
Formally Accepted
23 Sep 2019 Acceptance Letter - Lars-Peter Kamolz, Editor PONE-D-19-16388R1 Experiences, needs, and preferences for follow-up after stroke perceived by people with stroke and healthcare professionals: a focus group study Dear Dr. Kjörk: I am 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 notify them about your upcoming paper at this point, to enable them to help maximize its impact. If they will be preparing press materials for this manuscript, 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. For any other questions or concerns, please email plosone@plos.org. Thank you for submitting your work to PLOS ONE. With kind regards, PLOS ONE Editorial Office Staff on behalf of Dr. Lars-Peter Kamolz Academic Editor PLOS ONE https://doi.org/10.1371/journal.pone.0223338.r004

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