In addition, we have asked an English-editing service to edit the text, and you will find an English-edited version of the paper submitted as well.

Transcription

1 Author s response to reviews Title: Resource Use and Disease Course in Dementia - Nursing Home (REDIC-NH): A Norwegian Cohort Study from Admission to a Nursing Home until Death. A description of study design and patient characteristics at admission. Authors: Irene Roen (irroee@sykehuset-innlandet.no) Geir Selbaek (geir.selbaek@aldringoghelse.no) Øyvind Kirkevold (oyvind.kirkevold@aldringoghelse.no) Knut Engedal (knut.engedal@aldringoghelse.no) Ingelin Testad (itestad@gmail.com) Sverre Bergh (sverre.bergh@aldringoghelse.no) Version: 1 Date: 29 Mar 2017 Author s response to reviews: Dear Editor Gianfranco Damiani BMC Health Services Research Thank you for your kind interest in our manuscript: "Resource Use and Disease Course in Dementia - Nursing Home (REDIC-NH): A Cohort Study from Admission to a Nursing Home until Death. A description of study design and patient characteristics at admission." (BHSR-D ). Many thanks for useful comments that will improve the text. You will find a description of our changes as point-by-point response to the issues raised by each reviewer, with our comments in italics. Changes that have been made to the manuscript text are described exactly, with reference to the manuscript. All changes in the manuscript are indicated in the text by using track changes. In addition, we have asked an English-editing service to edit the text, and you will find an English-edited version of the paper submitted as well. We hope that these revisions improve the paper such that you and the reviewers now deem it worthy of publication in BMC Health Services Research.

2 On behalf of all co-authors, Irene Røen Reviewer reports: Sandipan Bhattacharjee (Reviewer 1): The manuscript titled "Resource Use and Disease Course in Dementia - Nursing Home (REDIC- NH): A Cohort Study from Admission to a Nursing Home until Death. A description of study design and patient characteristics at admission" is an interesting study. However, there are some concerns that need to be addressed before further consideration. Thank you very much for your interest in our paper and we appreciate your constructive comments and suggestions. We are grateful for the time and energy you expended on our behalf. Please find our response below; 1. The overall aims of the main study of REDIC-NH is significant, however, after reading the findings from this study, it is difficult to understand the significance of the findings presented in this particular manuscript. It is well documented that elderly individuals with dementia suffer from behavioral issues and Alzheimer's is the most common form of dementia. What new information does this study add to the already existing studies (ref 3 and 6)? This is even more important as the authors point out that the prevalence of 83.8% dementia at NH admission is the main finding of this study (but existing studies have already demonstrated percentage close to this manuscript). The authors mention a few significances in the Conclusion section, but it needs to be teased out when presenting the rationale/need of this study and what new information is presented from these findings. Thank you very much for this important input. We agree, and can see that we have not emphasized enough the importance of this being one of the few studies in international literature that includes NH residents at admission and then following them with regular assessments every 6 month, as opposed to previous nursing home studies which are mainly cross sectional. Therefore, the new findings presented in this study are the prevalence of dementia at admission to nursing home. The study then follows the patients with regular assessments, giving the opportunity to study the course of the dementia disease and symptoms during the NH stay. 2. The title seems to be a little misleading given the fact that both demented and non-demented populations are being considered for inclusion.

3 We agree. However, as the main focus in the REDIC study is resource use in patients with dementia, we have focus on dementia in the title. Patients admitted to the nursing homes without dementia are merely controls, and not the main focus. Therefore, based on this and the previous insight and clarification we have chosen to keep the title. 3. Also, in the Methods section it is mentioned that to be included in this study, individuals younger than 65 needs to be established dementia patients. I wonder why it is not the same for those who are 65 years and older. If it is essential to include a comparison group, then both the younger and elderly groups need to have equivalent/comparable age group. Previous studies have shown that more than 80% of the patients in Norwegian NH have dementia, but only about 50% of those with dementia have a diagnose of dementia. Thus, we decided to include all patients above 65 years at admission to NH, to ensure that also patients with dementia but no dementia diagnosis were included. Younger persons with dementia more often have genetic basis for their disease, and their course of dementia is different from elderly persons with dementia. Therefor we were interested in including younger persons with dementia admitted to the NH. Persons 65 or younger with dementia usually have been diagnosed with dementia at admission to the nursing home, and including persons with diagnosed dementia in the age group less than 65 years would ensure that all younger persons with dementia admitted to the NH were included. Younger persons without dementia admitted to NH in Norway usually have severe and terminal diseases or are multi handicapped and could not be used as control, which explains the inclusion criteria. These points have been added to the manuscript at the end of the Background section (page 3). We hope this is clarifying to the point that you have made. 4. In the Background section, it is mentioned that the prevalence of dementia in Norway is 78,000. This needs to be expressed in terms of percentage of the total elderly population (or even general population) of Norway to better understand the dementia disease burden. The percentage of persons with dementia in Norway is 1.5% of the total population. This information is added in the manuscript in the Background section, at page How long back were the medication use history examined?

4 The medication use history was examined from admission to nursing home and onward. This information is added in the manuscript under Measures in the Data collection section, at page 7, under Medication. 6. I am also curious to know that out of the three experienced physicians who made the dementia diagnosis, what were their specialty? It seems that two of them were psychiatrists. Were there any Neurologist on board for this study? Of the three experienced physicians who made the dementia diagnosis two of them were psychiatrist and one were intern specializing in psychiatry. No one of them was neurologist. This information is now added in the last paragraph under the Measures section, at page It is hard to accept the argument that dementia diagnosis is not seen as important (Discussion section) in nursing home patients as dementia prevalence is very high in NH settings. We absolutely agree with you, and realize that the sentence should be rephrased. We wanted to discuss why dementia is underdiagnosed in NH, and that it may be because diagnosis of dementia is not given priority in nursing homes. The sentence in the Discussion is now changed to; Another explanation of the discrepancy can be that diagnosis of dementia is not given priority in nursing homes, as it is often claimed that there is no curative treatment for dementia and the diagnose do not benefit the patient, at page I would like to hear thoughts from the authors as to why the use of anti-dementia medications was recorded in less than one-third of dementia patients? We think that the reason for low prescription of anti-dementia medication for patients with dementia was that dementia was severe and anti-dementia medication had been discontinued. A sentence about this is added in the Discussion section, at page 12.

5 9. Antipsychotic use seems to be low given the wide presence of behavioral issues of the included sample. We agree, but the numbers reflect the general attitude towards anti-psychotics for patients with dementia in Norwegian nursing homes at the moment. 10. The manuscript also needs attention to improve the quality of written English. For example the following sentence in the Abstract can be written in a better way-"the aim of this paper was to describe the data collection and to present some demographically data and data on dementia and NPS". We agree. The manuscript has been reviewed by an English language editing service. Therefore, we have submitted two versions of the manuscript. One manuscript before the language editing so you can track our revision, and one manuscript with edited language. Chiara Cadeddu (Reviewer 2): Thank you for your manuscript. The content and the results are interesting and relevant, but there are some minor essential issues to be revised before the publication. Thank you very much for your kind words about our paper. We are delighted to hear that you think our work is interesting and with relevant results. We are grateful for the time and energy you expended on our behalf. Please find our response below; TITLE AND ABSTRACT: First of all, I suggest you to mention the Country where the study was carried out both in the title and in the abstract. Your suggestion about mentioning that the study is carried out in Norway is added in the revised manuscript, in the title and in the Background section, both at page 1. BACKGROUND: At line 28, you wrote "In this paper, we present the data collection, some demographic data, and data on dementia and NPS." If you mean that this is only a part of the results of the REDIC-NH study, you should better explain it here.

6 Thank you for pointing out this important shortage in our manuscript, which also reviewer 1 pointed out. In the revised version of the manuscript we have reworded this part in the Background section, in the last paragraph, at page 3. We also elaborated that this study is designed to collect broad information that will be used in several other studies. METHODS: In the Study design and setting, line 42, you should specify the reasons why the 4 NHs decided to withdrew from the study. Information about why the four NHs withdrew from the study is added in the first paragraph in the Method section. They withdrew from the study because they considered that it would lead to a substantial workload. In the data collection, line 15, you mentioned a collection of DNA samples from the patients, but I cannot read which information you obtained from them (also in the other sections where they are mentioned it is not clear the aim of this collection). In the revised version of the manuscript we have elaborated that this study is designed to collect broad information that will be used in several studies, and the DNA sample collection is an example of that. In the same section, line 22, you wrote that dementia diagnosis was made according to established criteria but you did not explained these criteria and there is no reference. I read that they are specified in the following paragraph, but you should possibly make a reference to it or move it to the paragraph above. These references have been added to this section in the revised manuscript, at page 4. At line 28, the changes in the baseline dataset are not clear, both in the text and in the table. Please give some more information about them.

7 More information about the changes in the baseline dataset is added in the Data collection section, at page 4; Due to collaboration with other research groups and input from research assistants in the field, changes in the baseline dataset were done during the inclusion period. Some assessment tools were taken out because it was too demanding for the patients to complete and/or to implement for the NH staff. Other assessment tools were added to the baseline-data collection due to input from other researchers. The footnote in Table 1 are also elaborated. MEASURES: they are very well written and detailed. No change is needed. Thank you! RESULTS: in the whole paragraph, you should always report the value of p where results are described. P-values are added in the revised manuscript. Please emphasize in the text only statistically significant results and report complete results only in tables. This is checked and corrected in the revised manuscript version, at page 8 and 9. At line 25, please check the results about higher QoL-AD for self-rated scores for patients with dementia (in the table 2 I read 32,5 for them and 34,7 for patients without dementia; see the same results reported at line 8, page 11 in the discussion section). At line 34 please correct 371 with 372 as reported in table 3. Thank you for pointing this out. In the revision, we have checked and corrected this intermixing, at page 8 in the manuscript.

8 The subparagraph beginning at line 49 and ending at line 60 is not clear. Please rephrase it and possibly refer it to the respective table. We apologize for the confusion. We have gone through the paper and removed this subparagraph and two references, because we find them unnecessary. At page 9, line 27, you wrote "The most common comorbidity diseases, according to the Charlson's comorbidity index, in both patients with and without dementia was coronary diseases and cancer (see Table 7)." but looking at the table other comorbidities are most common in all patients. Please check the text and the table. At line 45, there is a sentence already mentioned in the Background and it is not clear its linking with the rest of the section. This is checked and corrected in the revised version of the manuscript, at page 9. DISCUSSION: As for the Results section, please discuss in the text only statistically significant results or at least explicit where the results discussed are not statistically significant. This is checked in the revised version. At page 10, line 1, please check the % of prevalence of dementia vs. the % reported in table 5. At line 3, the right percentage of Belgium descriptive study is 48% (mental disorders - see abstract). Accurate percentage of dementia is 83.8 %, this is corrected in the revised manuscript, as the percentage of the Belgium study is. STRENGTHS AND WEAKNESSES: At page 12, line 36 there is a subparagraph with the same content of the beginning of the section (line 42, page 11). Please remove where doubled. The section under strengths and weaknesses including doubled information is rewritten, page 12.

9 So, again, we would like to thank the reviewers for your interest for our manuscript and for your thoughtful comments and constructive suggestions, which help to improve the quality of this manuscript. On behalf of all co-authors, Irene Røen