Development and Testing of the Aftercare Problem List, a Burn Aftercare Screening Instrument

Round 1

Reviewer 1 Report

Comments and Suggestions for Authors

Good premise for the research and tool.  I congratulate the authors on focusing in this area and fully support their intentions in the development of the tool.

 

On the whole I would like to see this published and the manuscript does not need masses of work in my view but there are some things that I would like to see addressed, either in a revised manuscript and or via the authors justifications in a response;

Could provide a stronger justification for why another different tool to the Adult Burn Patient Concerns Inventory is required?

Why were only staff involved in the initial content refinement stage?  Is it not a limitation that patients did not co-produce this step?

It is unclear who the participants in the second cognitive evaluation phase were.  There should be details on these participants, and how they were recruited.

Why did some participants complete the paper version by mail and some at the OP clinic?  Any implications regarding the difference?

At what point was oral consent taken?

Why only one interview with one person with low literacy who did not have burns?  This sounds like a quick check for convenience?

I found the description of the role of the focus group and expert meeting in deriving domains confusing, especially as you state that all health domains from the focus groups were maintained but the final domain list seems to be totally different.  The domains from the focus groups do not seem to correspond to the final domains listed.  Can you review this description of the process please?  As above it’s unclear why you wouldn’t involve patients in this process at this stage?

Section 3.3. states that most prevalent concern was scars (81%), but table 3 lists positive coping as having 88.2%.

N(%) at least 1 item missing for scar treatment and a (26missing) under scar treatments which seems to have strayed into the paper without explanation.

 

Discussion and conclusions

More importantly, I would urge some caution about some of the conclusions, for example regarding the impact of treatment on quality of life, or as assessed in this study, a visual representation of distress.  The “treatment” domain covers a limited and arguably not very nuanced list of things related to a select set of issues around treatment (rubbing lotion into scars, fragile skin (not even specific to treatment?), wearing pressure garments (what exactly?), silicone or camouflage treatment).  For the authors to take a lack of correlation of this limited set of items with a proxy measure for distress as signalling that we might not want to pay attention to the impacts of treatments, for example in the assessment of quality of life, seems like an overreading of the findings here.  I don’t personally see that this conclusion is robust and would suggest that the authors are more critical and circumspect regarding this discussion point.  Please do review or justify this.

There is no discussion of implementation of such tools and the practicability of this in clinical practice – how, when, and what might result?  As with any screening tool it is limited by (1) the availability of effective interventions to ‘treat’ what is being screened for and (2) the coverage and completeness of the screening ‘test’ – in this case the opportunity and willingness to implement this in clinical practice.  These issues should be at least mentioned in the discussion

Comments on the Quality of English Language

Excellently written paper.

Author Response

Please refer to attached file

Author Response File: Author Response.pdf

Reviewer 2 Report

Comments and Suggestions for Authors

This manuscript describes the continuation of work to develop and test the Aftercare Problem List, a screening tool to identify patient-reported health-related problems. The mission of the APL is to be easy and quick to use in the outpatient setting. The authors stated their hypotheses as physical problems and psychological problems are more frequent concerns. The aim of the study was to establish face validity and explore if can detect time-related differences in concerns.

When considering this review, I have used the COSMIN content validity (includes face validity) methodology as a guide (Microsoft Word - COSMIN methodology for content validity - user manual v1.0_2)

- Relevance: comment that the included items are relevant for the construct (burns aftercare problems), target population (need to clarify is for adults), and context of use of interest (burns outpatient setting), response items appropriate, recall period (right now).

- Comprehensiveness: experts and people with burns (adults)

- Comprehensibility: card sorting with patients & modified wording following review with person with low literacy levels. A comment to the response options in Supplemental File is that they are a questionable match the question. This was interesting for me as I was looking for a Yes/No response based on the questions, but this could be due to the English translation. For example, ‘Do you suffer from any of the following symptoms due to your scars?’ would appear to be a better ‘response match’ to the question than what is currently in the English translation. I would be interested to hear the author’s response to these observations.

General comments:

Please clearly state in abstract and title (at minimum) that APL is for adults (aged over 18 years).

Please include time taken for completion (given your stated mission for APL of quick to use, and describe the APL as fast and easy screening instrument)

Specific recommended changes:

Figure 1 (line 176): Mean time post-burn in sample was 8.1 months but authors looked at <6 months and >6 months for time-related differences. Please report on numbers in each group (<6 months and > 6 months) in Figure 1.

Table 1 (line 187) is difficult to understand – please clarify what is DT versus frequency of item responses.

Line 35, missing word – sleep problems have been identified as enduring problems

Check congruence of wording between Figure 2 (line 192) >4 and >=5 and text (line 193-194)  of below and higher than 5.

Line 200-201 – is this that they were related to higher or lower distress, or DT scores? Please clarify.

For Table 2, please include explanation of * and ** below the table

For Table 3, please is Sign to mean significance? If yes, please clarify in table.

Line 239 – please give a number to support the statements about ‘minority’ found the items confronting (for example, 1%) and were there any patterns to what were confronting items?

 

Author Response

Please refer to attached file

Author Response File: Author Response.pdf

Reviewer 3 Report

Comments and Suggestions for Authors

The authors of this study describe the development, as well as quantitative and qualitative evaluation, of a burn screening instrument for physical and psychosocial problems in the aftermath of a burn event. Their study builds on prior work (Kool et al 2017) identifying quality-of-life items. The manuscript gives a detailed description of the methodology used for structuring, testing, and refining the instrument titled Aftercare Problem List. I commend the authors for this undertaking and thoughtful work to refine their evaluation tool. The manuscript provides an adequate introduction and background on the subject as well as citations. The author's own work is cited several times; however, this is pertinent to the research and does not appear to represent inappropriate self-citation. Current results, future direction, and limitations of the current study are all appropriately discussed.  There are no significant concerns with the current manuscript and  this manuscript can be accepted in the current form. I would ask the authors to consider a further discussion of what they see the role of the Aftercare Problem List being in conjunction with quality-of-life measurement tools and if there is the optimal frequency of using the Aftercare Problem List (ie concern for declining patient engagement with multiple administrations).  

Author Response

I would ask the authors to consider a further discussion of what they see the role of the Aftercare Problem List being in conjunction with quality-of-life measurement tools and if there is the optimal frequency of using the Aftercare Problem List (ie concern for declining patient engagement with multiple administrations).  

 Authors’ response: We would like to thank the reviewer for the time and effort to consider our manuscript.

This is difficult to say because we did not investigate this. QoL instruments are often more extensive, assuming to have ‘diagnostic value’, whereas our instrument only tries to elucidate potentially present problems not necessarily indicating diagnostic meaning. However, we agree that these are interesting issues and have added the following text to the manuscript:

Future research may also investigate the optimal timing of applying the screening, the optimal way of administration (in advance or at the outpatient clinic) and to study patient engagement with multiple administrations. However, results of this study indicated that the instrument seems to be useful in burn survivors who visit the outpatient clinic beyond the subacute phase, because particularly this group showed to have more problems in the psychological domain that may call for further attention.

Reviewer 4 Report

Comments and Suggestions for Authors

A well written mansucript on development and testing of an aftercare screening instrument.

Would be nice to expand a bit on time needed for healthcare to handle the instrument; who's fitted to review the answers?

Would increase paper's significance if final product was tested on patients.

Comments on the Quality of English Language

Easy and comfortable to read. Maybe somewhat wordy.

Author Response

A well written mansucript on development and testing of an aftercare screening instrument.

Would be nice to expand a bit on time needed for healthcare to handle the instrument; who's fitted to review the answers?

Authors’ response: We would like to thank the reviewer for the time and effort to review our manuscript. We have added time need to complete the instrument and that the aftercare nurse reviewed the answers.

Would increase paper's significance if final product was tested on patients.

Authors’ response: We agree on that, and have added this more specifically:

Further research should investigate the adjusted version and may specifically investigate the usefulness of the instrument with images in patients with low language proficiency.

Round 2

Reviewer 2 Report

Comments and Suggestions for Authors

Thank you for those changes that have improved the clarity of your manuscript for me.