Title: Health Care Professionals' Attitudes Regarding Palliative Care for Patients with Chronic Heart Failure: An Interview Study

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1 Author s response to reviews Title: Health Care Professionals' Attitudes Regarding Palliative Care for Patients with Chronic Heart Failure: An Interview Study Authors: Jeanette Ziehm (jeanette.ziehm@uniklinik-freiburg.de) Erik Farin (erik.farin@uniklinik-freiburg.de) Katharina Seibel (katharina.seibel@uniklinik-freiburg.de) Gerhild Becker (gerhild.becker@uniklinik-freiburg.de) Stefan Köberich (stefan.koeberich@uniklinik-freiburg.de) Version: 1 Date: 14 Jun 2016 Author s response to reviews: Responses to Reviewers/Editors Comments (Reviewers comments displayed in brackets, responses are also available in the cover letter) Reviewer 1 (The English translation is not always accurate. For example line 217 should read NYHA Classification not NYHA stadium.) The manuscript has been professionally proofread by Proof-Reading-Service.com, thank you for indicating the wrong declaration of NYHA classification, we changed that (line 263). (This is an interesting study with an important focus being on a culture and country that has not currently reported on this subject area.)

2 Thank you very much for your appreciation and your helpful comments. (However, there are a few areas that need attention to strengthen the paper. The background section does need to be strengthened as there are many papers that have reported on this issue and that have not been acknowledged in this section. Particularly the patients and carers perspective on palliative care and when it should be introduced. The need for an integrated service has been published quite widely over the last few years.) Thank you. As this paper addresses the attitudes of the health care professionals involved in the care of patients suffering from CHF, we did not integrate the perspectives of the patients and their carers. But as this is an important point we added some information on that to the background section (lines 88-90). Further, we added findings from Belgium indicating shortcomings of general physicians in the initiation of PC as well as patients avoidance to articulate palliative care needs in front of their general practitioners (lines 80-83). (Methods section: It was not clear why only 3 per profession was chosen and why no palliative care physicians were chosen.) The interviews served as basis for the development of a questionnaire to be administered to health care professionals nationwide, for this purpose three interviewees from each professional group seemed appropriate. In fact we conducted more than three interviews with some professional groups to increase data saturation (hospital and outpatient nurses, hospital cardiologists). We did not include palliative care physicians as they barely see patients suffering from CHF and we focused on professionals involved in usual care of those patients. Further, in case a palliative care process is initiated the professional groups interviewed are mostly responsible for this initiation. One of the general practitioners was additionally trained in palliative care and involved as physician in a local palliative care network, we added this information to the methods section (line ). Further, we added two nurses from palliative services to our sample to have their points of view involved. (The recruitment strategy was not robust with a risk of bias being introduced due to how participants were chosen.)

3 That is right. We interviewed a local sample as interviews were supposed to take place face-toface. Further, the recruitment area is characterized by a very good palliative care infrastructure, still showing very few rates of CHF patients receiving palliative care which was supposed to support the identification of barriers to PC of this patient group. We added that information to the methods section (lines ), that information appears in the discussion, too ( ). Some of the interviewees were recruited by entries in the phone book, others through existing professional contacts of the authors. As this procedure might lead to bias we addressed this issue as a limitation in the discussion. (Should ethical approval not also be commented on in the paper?) Thank you for pointing that out. We additionally added information on ethical approval to the methods section (lines ). (Table 1 why have you reported gender as the only demographic? Is this significant? Not sure it is and you have not drawn on this or acknowledged this any further in your paper. Are there other aspects that may be more significant to report on?) Table 1 shows the composition of the sample regarding professional background. As there is a gender bias within the professional groups (nurses mainly female, physicians mainly male) we wanted to make that transparent as this cannot be concluded from the gender composition of the whole sample. However, as this gender inequality is true for the whole population (health care system) this is not supposed to bias the results. Information on age, sex, professional experience, working conditions of the whole sample is displayed below the table. We did not administer statistical tests for any sample characteristics, those serve as descriptive information. (It would be good to know how the interview schedule was used and what the main focus of this was. It would be good to see how these themes emerged and a presentation of this in your results section.) Thank you. We added information on how the interview schedule was used to the methods section (lines ). Information on the main focus of the schedule is displayed in the methods section, too (lines ). For development of the coding scheme we did not follow

4 the questions of the interview schedule rather we derived the coding scheme out of the interviewees responses (according to Mayrings Qualitative Content Analysis). However, we do have the information on care of CHF patients, experience with palliative care, and so on (see also coding scheme in the additional files). But as the research question concentrated on attitudes regarding palliative care of CHF patients we did not include that information into this paper. (There could be more quotes from the interviews to support your findings.) Thank you for this comment. We added more quotes to the results section to underline our findings (lines , , , ). (Your discussion does emerge from your findings, however linked to a greater relevant evidence base would be good.) Thank you for pointing that out. We included findings from two Delphi studies performed in Germany which also found that collaboration and education are essential in improvement of palliative care (not only for CHF patients) (lines , ). (I am not sure the follow on study does need to be discussed in this paper as it is not related to your paper and the findings you have presented.) As the findings of the present study served as basis for the development of the questionnaire and as this is a consecutive 3-phase study, we would like to refer to the follow-up results. Reviewer 2 (I think this is a well written useful piece of research. I have a few minor comments that I would like you to consider.)

5 Thank you very much for your approval and your useful comments! (Line 43-I think improvement is not the correct word to use here-maybe "developing agreement"?) Thank you for pointing this out. We changed the term from improvement to development of a joint agreement (lines 49-50). (Line 96 and table 1 do not need percentages, just the number in each category) Thank you. We would like to present the percentages to the readers as this might facilitate imaging the portion of the whole sample at one sight. (Lines 34,176,268,27,272 The use of "not able to accept medical borders" seems unclear. Do you mean medical limits as in line 268? If so then I recommend you use that term all the way through.) Thank you for this comment, we changed the term medical borders to medical limits throughout the manuscript and the additional file (lines 40, 213, 334). (Lines 194, 259, 296 It is not clear which definition of palliative care the authors/participants are working with. I think it would be valuable to discuss different definitions of palliative care (i.e. only end of life vs symptom control/who definition) in the discussion section of the article.) Thank you. We included the WHO definition of palliative care into the background section (lines 63-65) and referred to that topic again in the discussion (lines ).

6 (Lines 198, 263 The phrase displacing their mortality doesn't seem quite right here- I wonder if you could us the term "not acknowledging" or "avoiding" or "not accepting" to make your meaning clearer?) Thank you for that comment. We changed the term displacing their mortality to not accepting their mortality throughout the manuscript and the additional file (lines 234, 321). (In summary I think this is a very good paper on an interesting topic and I recommend it for publication with a few minor revisions.) Thank you very much! Additional Associate Editor Comments (- Please reconsider your use of the abbreviation "PC" - using the full term "palliative care" improves the reading. This is particularly notable in sentences where CHF is also used.) Thank you for this hint. We now use the full term palliative care throughout the manuscript. Abbreviation only appears in the quotes from the interviews and the additional file. (- Naming the institution from which professionals were recruited (methods section) raises ethical issues around participant identification - please revise.) Thank you for pointing that out. We removed information on recruitment area in the methods section, discussion, and availability of data section. (- It would be better to describe the interview guide as having been "piloted" rather than being tested in a pilot "trial".)

7 Thank you, we change that according to your suggestion (lines ). (- In describing the analysis, rather than "intersubjective reproducibility" do you mean "intercoder reliability"?) As the analysis group was rather about clearance of understanding of interviews inter-coder reliability might not be the right term. Instead we changed intersubjective reproducibility to validity of procedure to get the purpose more clearly (line 151). (- Consider revising the results subcategory headings to remove the word "subjective" e.g. "Subjective reasons pro PC for patients with CHF" could be "Potential usefulness of palliative care for patients with CHF".) Thank you. We changed the first three headlines in the results section according to your suggestion (lines 163, 186, 199). (- For clarity of meaning in the discussion, revise "Further, PC apparently is strongly associated with immediate death or assisted dying" to "They further perceived that the public strongly associated palliative care with immediate death or assisted dying" (if this was your meaning).) Thank you, we changed the phrase according to your suggestion (line 363). (- In the limitations section I would not describe your sample as "small" but it is "local" with potential biases. Again, please try not to refer to the place name of the locality here or elsewhere in the manuscript (e.g. it also appears under the "Availability of data and material" heading).) Yes, we deleted all information on where interviewees have been recruited from.

8 (- My view is that it is appropriate to refer to your follow on study, but if this has been completed and reported elsewhere you could say so and reference this.) Thank you. The paper on the results of the questionnaire is under review and not yet accepted. The paper on the Delphi method is in progress and will be submitted for publication soon. So unfortunately we do not have references of published data on the follow-up studies yet.

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