Title: The size of the population potentially in need of palliative care in Germany - An estimation based on death registration data

Transcription

1 Author s response to reviews Title: The size of the population potentially in need of palliative care in Germany - An estimation based on death registration data Authors: Nadine Scholten (nadine.scholten@uk-koeln.de) Anna Günther (anna@maranna.de) Holger Pfaff (holger.pfaff@uk-koeln.de) Ute Karbach (ute.karbach@uk-koeln.de) Version: 1 Date: 01 Feb 2016 Author s response to reviews: Dear Priv.-Doz. Dr. Simon, Dear Editorial Team, Thank you for your from December 25, We acknowledge the effort you and your reviewers have made and we appreciate the detailed critique and all the very helpful comments. We feel that your positive suggestions helped us to significantly improve the manuscript. Please find below the reviewers comments, our point by point responses, and attached the revised version of the manuscript. We hope our revised version will be received favorably, and we look forward to hearing from you in the near future. Sincerely Yours Nadine Scholten

2 Respond to the Reviewer 1: (1) Discussion section, p. 11, lines : With regard to this section, I would like to make two suggestions. First, I would propose switching the two paragraphs and (1) start with the limitations of the Rosenwax and Murtagh methods, while then (2) later going on by discussing the value of other methods (such as the one by Gómez-Batiste etc.) if further data are available, and (3) eventually concluding with the suggestions made in lines regarding further research in Germany. The section has been rearranged according to the suggestion of the Reviewer. (2) Second, I would strongly suggest including one or two brief sentences on the limitations of the Rosenwax and Murthagh methods, even if these have been widely discussed elsewhere. My assumption is that this article - rightly - will be highly cited and the figures reported here will carry weight for health care planning, health policy decision making, and economic estimates on the need and future costs of palliative care (for example for insurers). In my view, it would therefore be important to highlight that this is one potential approach to arrive at a valid estimate, but that "demand for palliative care" cannot be equated with these figures for several reasons, i.e.... For example, a critical reflection of the "demand for palliative care" against different disease trajectories - some with an intermittent need vs. others with a continuously increasing need, depending on the course and progress of particular diseases, would be useful (particularly with regard to the field of paediatric palliative care). It would also be helpful to reflect on how the experts had agreed on the codes / estimates / diagnoses informing the Murtagh method, and what it means that death certificates only show one diagnosis. At least I would propose including a brief summary of the three or four major limitations highlighted in the paper by Murtagh et al. (2013, pp ). The limitations mentioned in the literature have been summarized shortly. The Rosenwax and the Murtagh methods are based on death certificate data. The limitations of the Rosenwax and Murtagh methods have been widely discussed [10,17,28]; therefore, at this point, we only want to give a short summary of the main limitations. Both measures are based on death certificate data, whereby some diagnoses (e.g. dementia, Parkinson s or renal diseases) may be under- recorded [10], especially when only the underlying

3 cause of death has been documented. Population- based measures, like the ones Rosenwax and Murtagh utilized are condition-based and are therefore not able to measure the patients actual needs for palliative care [10,17,28], as need is determined by many factors, in addition to the diagnosis alone [29,30]. Severity, in addition to illness trajectories, is not accounted for. This may be especially relevant when it comes to severely ill children and adolescents, where there can be a possible demand for palliative care over the course of years [10]. (3) Method section, p. 6, line 103: From the introduction section it did not become quite clear which are the three existing methods that are referred to in this sentence - I understood that there were basically two methods presented - (1) the three different estimates according to the Rosenwax method, and (2) a refined estimate according to Murtagh et al. But I might have misunderstood or overlooked something? To clear the facts we parenthesized a short assignment of the three methods to the original Authors: This study was based on three (Rosenwax s minimal and maximal estimations and Murtagh s adapted version) of the existing methods to estimate the number of people who are possibly in need of palliative care. (4) Method section, p. 6, lines 120 ff: I would suggest referring to Table 1 in the beginning of this paragraph so that it becomes more transparent which adaptations were made - for example at the end of the sentence "...to ICD-10-WHO year 2013 codes". In addition, for a reader who is not as familiar with the ICD-10 codes, it might be helpful to include a very brief rationale to explain why certain codes could not be converted and therefore had to be replaced. To transfer the Rosenwax (Australia) and Murtagh (Great Britain) methods to German data, some adaptions had to be made to convert the defined codes to ICD-10-WHO year 2013 codes. This has been necessary, as the ICD-Codes between countries and years can differ (See Table 1 for the utilized ICD-10-WHO year 2013 codes).

4 (5) Discussion, p. 12, line 237: I would suggest phrasing this more strongly since it is today widely acknowledged among clinicians and in the scientific literature that also terminally ill patients with a non-cancer diagnosis can benefit from palliative care. The sentence has been sharpened Until now, it was mainly patients with cancer who received palliative care in Germany [27], although many terminally ill patients with a non-cancer disease benefit from palliative care as well [5 7]. (6) Discussion, p. 12, line 240: The point of this - informative - statement appears to be missing. I would suggest picking the message up by adding something like "These figures (i.e. the amount of non-cancer patients who could benefit from palliative care) can provide clues to inform the future planning of palliative care service delivery for patients with non-cancer diseases" - particularly since there is evidence of shortcomings the provision of palliative care for non-cancer patients in Germany (for example, see findings from a recent analysis at / and Thank you for your suggestion. The sentence has been added. These figures (i.e. the amount of non-cancer patients who could benefit from palliative care) can provide clues to guide the future planning of palliative care service delivery for patients with non- cancer diseases particularly since there is evidence of shortcomings in the provision of palliative care for non-cancer patients in Germany [7]. (7) Abstract, p. 2, line 34: Just a minor issue - but I would suggest saying "An estimation of the size of the population in need of palliative care is essential for health care planning". The sentence has been adapted according to the suggestion. Thank you very much.

5 (8) Introduction, p. 3, line 44: A minor issue but I wondered whether it is appropriate to speak of palliative care as an "profession" or whether it is rather a type of care or a discipline. The wording interdisciplinary profession has been deleted as the definition of the WHO can be understood in that way, but does not explicitly state the interdisciplinary nature of palliative care According to the WHO (World Health Organization), the aim of palliative care, as an interdisciplinary profession, is to provide symptom control and support for affected patients and their families who are facing a terminal illness [1]. (9) Introduction, p. 3, lines 49-52: The message of this sentence could be stated more logically - suggestion (just as an example): "Palliative care in Germany is an emerging medical field with notable improvements in the last few years. However, compared to Great Britain, which is considered to be the pioneer in palliative care development, more action needs to be taken to catch up. The passage has been changed according to the recommendations made by the reviewer to make it more logic. (10) Introduction, p. 3, lines 57-58: I am aware that the normative perspective was also proposed by Murtagh et al. (2013) and from a personal point of view I would agree this is a useful approach. However, from other perspectives, this argument is debatable - for example with regard to economic aspects of policy planning and resource allocation in health care. When determining and addressing a "need" for palliative care in the context of limited available resources, the question is always "How much value does a society attach to extensive and high quality palliative care provision and how much are people willing to pay for it?" I am aware that a detailed discussion of this argument will be beyond the scope of this paper - however, I wondered whether it would be appropriate to briefly address this issue in the discussion section. We added a brief sentence to give a hint to a further discussion, which we are not able to make in this context. Thank you for adding this aspect.

6 After all, "the demand for palliative care" cannot be seen as a given fact, but is partly subject to continuously evolving ideas of what is appropriate care, and what can be classified as an economic resource and resource allocation. The estimates performed can serve as a rough approximation, highlighting the immense need for palliative care in an aging society like Germany. (11) Introduction, p. 4, line 65: I wondered whether it would be useful to introduce subheadings in order to distinguish the different topics introduced in this section more clearly. Otherwise, I would suggest including a new sentence here to "set the scene" for the following description of the different estimates - something in the sense of "In recent years, xx major methods to estimate the palliative care demand were published...". To make it easier for the reader to get the main points of the introduction we inserted the following subheadings: Palliative Care in Germany Population based methods to estimate need for palliative care Objectives 11. Introduction, p. 4, line 76: I am personally at odds with the use of the term "palliative care candidate" or "palliative care patient". In the first instance, these people are persons with diseases, symptoms, and suffering - and in a second instance, they may be patients in need of one or more types of care. I am aware that this might be a little meticulous - and in addition there is no "elegant" solution except for cumbersome paraphrases such as "people in need of palliative care". 12. Results, p. 8, line 142: see comment above regarding "palliative care candidate". 13. Results, p. 8, line 155: see comment above ("palliative care patients"). 14. Results, p. 9, line 164: see comment above. I completely understand your point and totally agree. As there is no elegant way to replace the bulky wording we stick to "people in need of palliative care" as suggested.

7 (15) Results, p. 9, lines : Just as a suggestion: "To give further insight into age-related differences regarding the demand for palliative care, we performed an additional analysis accounting for the factor "age" Thank you for your effort. We are very happy to use your suggestion (16) Results, p. 9, line 162: Just a minor issue - I would suggest adding "Rosenwax" to the maximal estimate to make it clearer for the reader. We added (Rosenwax method) for clarity (17) Discussion, p. 10, line 187: I am aware that Murtagh et al. (2013) used a similar wording - but from a logical point of view, it appears strange to me that "deaths" can be in need of palliative care. Instead, I would suggest saying something like: "xx % of all deaths may have been preceded by a need for palliative care". Thank you for providing us a better wording, which we are happy to use. (18) Discussion, p. 11, lines : Overall, this conclusion seems to be appropriate and very informative. However, I would suggest attenuating the second part of the sentence a little bit by saying "...therefore, it can be concluded that an aging society has a higher demand for palliative care" or "therefore, in an aging society, a higher demand for palliative care can be assumed". After all, "the demand for palliative care" cannot be seen as a given fact but is partly subject to continuously evolving ideas of what is appropriate care. We attenuated the second part of the sentence by saying: therefore, in an aging society, a higher demand for palliative care can be assumed

8 (19) Results, p. 18, Table 1: It is not clear to me why in the third column sometimes only plain numbers are reported and sometimes also percentages. But I may have overlooked something or misunderstood this column? Thank you for having a closer look on the data. In some cases the percentages got lost. We therefore added the missing percentages. Respond to the Reviewer No. 2: 1. As the manuscript is dealing with a (potential) needs estimate of the German population toward (specialized) palliative care, the current title might likely benefit from re-adjusting for clarity. For clarity the title has been re-adjusted The size of the population potentially in need of palliative care in Germany - An estimation based on death registration data 2. In order to further enhance clarity and flow, the objectives of the study (including establishing baseline data for health system planning) might be stated more clearly under an own subheading at the outset - helping to lead the (busy) reader toward the Discussion and Conclusion sections. The same goes for an outline of this study's limitations (e.g., utilization of 2013 data only) as part of the Discussion, and next steps (implications toward policy and research) in a Conclusions one (as indicated in the Abstract). To lead the busy reader we added subheadings in the introduction and in the discussion to differentiate between discussion, limitations and conclusion. The studies objectives can now be found under an own subheading and is taken up in the conclusion section again. The utilization of 2013 data has been addressed in the method and limitations section. 3. The utilization of 2013 data (only) to establish the baseline might be further explained in the methods section (e.g., latest data set available?

9 In the method section we added that 2013 is the latest data set available. The database used for our calculation is the German Mortality Statistics 2013, as it is the latest data year available. We restated the limitations of a analyzing only one year in the limitations Our study is based on data of one single year (2013). Further findings can be obtained using a longitudinal analysis and expansion of the databases to more than one analyzed year. 4. Please also edit the manuscript (including the References section) further with an eye toward spelling, inconsistencies (e.g., journal abbreviations in the References section) and grammatical (changes in tense)/sentence structure issues. A medical editor can likely provide further suggestions toward alternative terminology (e.g., decedents). The manuscript has been proof-read by a native speaker and inconsistencies in the Reference section have been corrected. 5. In order to assist an (international) readership, the Introduction (Background) section might be re-jigged to include a brief overview paragraph on palliative care service provision in Germany - potentially also providing the country's ranking according to the recent The Economist Intelligence Unit's The 2015 Quality of Death Index. As we added subheadings we included the subheading: Palliative Care in Germany. Here we mention the the country's ranking according to the recent The Economist Intelligence Unit's The 2015 Quality of Death Index 6. In line with international customs, a sentence toward ethics review (or exemption as appropriate) might be added as part of e.g., the Methods section.

10 A sentence towards ethic review has been added The database provided by the Federal Bureau of Statistics contains no data on the personal level, and is therefore open to the public. Thus, obtaining ethical approval is not necessary. 7. As comparisons to other countries (e.g., Australia) are drawn in the Discussion section, agegroup specific differences might be included in revised Graphs 2 and 3. Thank you for your suggestion. As the age-groups published in the German data do not correspond to the age groups of the Australian or British data, we were not able to match the data in one graph. The only data available with matching age groups is for the age group over 65, what is displayed in the graph no From a resource utilization perspective, the relatively high needs in the age group from years might warrant some further focus (Graph 2). The following sentence has been added to give an extra focus on the transition of the cause of death with older age. The increase of potential palliative care needs with older age is caused by a change of the cause of death from more external causes of death, like accidents, to more cases of death caused by diseases, potentially creating a need for palliative care (e.g. cancer and vascular diseases). 9. Although outside the immediate scope of this paper, is there any preliminary data on SAPV (Spezialisierte Ambulante PalliativVersorgung) utilization rates (by age group) as another potential proxy variable for triangulation (as indicated in the paper by Murtagh and colleagues) - especially with location of care in mind? To our knowledge for Germany there is no population based data on the utilization of SAPV care.

11 10. The manuscript might benefit from further referencing throughout to assist the (busy) reader. As indicated above, perhaps the recent Quality of Death Index report by The Economist Intelligence Unit might be introduced early on, and the (implied) distinction between primary and (secondary/tertiary) specialized palliative care provision might benefit from further clarification (especially with regard to Rosenwax and colleagues' work from an Australian context). According to your suggestion we have mentioned the recent Quality of Death Index report by The Economist Intelligence Unit in the Introduction. In addition we clarified the German understanding of primary and specialized palliative care. According to the Quality of Death Index 2015, published by the Economist, Germany ranks number 7 behind Great Britain (No. 1), Australia (No. 2) and New Zealand (No. 3) [14]. Palliative care has been stated to be a human right [15]. With the healthcare reforms in 2007 in Germany, every patient in need of specialized palliative care should be able to receive that care [16]. Regarding palliative care, there is a distinction to be made between primary palliative care provided by general practitioners, for example, or specialized palliative care supplied by physicians specializing in palliative care, for example in hospitals or ambulatory teams [11]. 11) The listing of ICD-10-AM codes for which transfer to ICD-10-WHO codes was not possible might be moved from the Methods section to Table 1 as a footnote to enhance flow. We added a footnote and moved this section. 12) The paragraph toward the comparison of results for the age group 65 and over for Australia, Germany and Great Britain might be moved from the Results section to the Discussion section for context. We moved the section to the Discussion.

12 13) To potentially enhance the health system piece, would the estimates change significantly if multi-year data was employed - and can a prediction with estimated death data for e.g., 2020, 2025 to 2050, be made? We added this aspect as to-do for further research, as predictions for the future could be made, but we did not do yet.