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Care Tailored to South Asian Women 1 July 15th 2012 Dear Dr Chasen and Dr. Doris Howell, We were pleased to receive your reviewers’ comments regarding our submission” Breast Cancer Survivorship Care Tailored to South Asian Women". We reworked our manuscript to be in agreement with comments that were brought forth by the reviewers. We were encouraged by Dr. Howell’s suggestion of resubmitting the manuscript after the revision. Thank you very much for this opportunity to resubmit the manuscript. Yours sincerely Savitri Singh-Carlson [email protected] We will present a point by point response to the reviewers’ comments: REVIEWER C: This current study was conducted to explore the perceptions of South Asian (SA) breast cancer survivors in regard to follow-up care and to determine the optimal content of a tailored survivorship care plan (SCP). Mailed-base survey with n=64 representing a ~25% response rate. INTRODUCTION: * Overall I find the Introduction to contain some important background but the flow could be improved and more references could be added. * The first paragraph could be strengthened by keeping with consistent Canadian statistics rather than switching from Canadian to US. Answer: More references have been added to provide a much stronger background and rationale for the study. The Canadian statistics data has been pronounced here rather than the US data * The second paragraph states that a number of centers have developed and evaluated SCPs but there are only 2 references provided. This may be somewhat overstated. Care Tailored to South Asian Women 2 Answer: More references have been added to support the statement here * I would like to see more references in the first paragraph on page 5. Answer: More references have been added to support the statement here * I find the second paragraph on page 5 to lack important details. For example, how do SA women have different experiences with BrCa diagnosis? The studies by Burg et al. 2009, Howard et al. 2007 and Gurn et al., 2008 did not include any comparison groups to compare experiences. Answer: This information on the differing ethnicities data especially those on the SA population has been added to provide more depth to the statement. * It is important to clearly state what new information this study will add-what are the gaps? Answer: The gaps have been identified here in order to highlight the importance of this study that adds information on the diversity of cancer patients * I find that the objectives stated in both the abstract and at the end of the Intro are not entirely analogous with what is presented in the results. Most of the results focus on the care received and the common physical and psychosocial side effects and there is less focus is on the actual content of the SCP. There is no data on the format of the SCP instead is on preferences for delivery of the SCP. Answer: The data presented in the abstract and the results have been consistent. METHODS: * It seems that there were two stages of this research process but only the methods and results from Phase II are presented. If the focus of this paper is to build on the unpublished Care Tailored to South Asian Women 3 results from Phase I then you need to provide more details on the results/findings of Phase 1 in the Introduction to provide an adequate background. Answer: More results from Phase I has been added to the introduction to provide a more thorough background. * You have divided up a small sample size (n=64) into 4 age groups but there is no hypothesis regarding this or justification for why you want to look at age. This is not part of your objectives. Answer: This has been added to the objectives of the study. * Section 2.1: * I find the description of the sampling as presented on Page 7 to be very confusing as presented and could be condensed. Answer: The description was condensed. * The number of eligible participants listed in your methods and abstract do not match. Answer: this has been rectified. * Section 2.3: * If the data from the original survey questionnaire is unpublished then it would be helpful to have a bit more information on this. Answer: this information has been provided in the method section in order to provide context to the development of the survey. * The authors state that changes were made to the questionnaire based on differing cultural experiences-how was this determined? Answer: This has also been addressed in the method section * How was the questionnaire translated? What method was used? Care Tailored to South Asian Women 4 Answer: Professional translator part of BCCA were used. Verified for accuracy and completeness by SA members of team English to Punjabi. * Please provide more details on what additional input was obtained that lead to changes in the questionnaire. Answer: This information has been provided in the method section and an explanation has been provided * Please describe what format the 27 questions were (i.e. likert, open ended etc) and scales used. Answer: Details on formatting of the questions was included. * Please provide details on the results of the validation and reliability (re-test) process. Answer: This has been added. * Section 2.5: * Please provide more details on the qualitative methods employed and references. How many coders were used? Were they blind? How were discrepancies resolved etc. Answer: This has been added with a reference * How were the age groups determined? It is difficult to make any conclusions or comments on differences by age group because of the sample size. Answer: The age groups were determined based upon data extracted according to life stages from phase I of the study. Details on part I of the study were added to the Introduction as mentioned previously. Care Tailored to South Asian Women 5 RESULTS: * Throughout the results please add the n as well as % Answer: This has been added. * Section 3.1: * Most of the first paragraph describing the characteristics is also contained in Table 1. If you are keeping age groups please provide the number within groups along with percentages. Answer: The first paragraph has been shortened and Table 1 has been adjusted with numbers as well as percentages. Age groups were not kept for Table 1. * The authors state that English is stated as the secondary language for most but it is only 29.7%. Answer: This sentence has been deleted. * "most" are not retired (31.3%) or high school graduate (32,8%) Answer: This sentence has been deleted. * Roughly 2/3 of the sample has lived in Canada for over 20 years. This issue of acculturation has not been discussed and is an important factor to consider. These are, for the most part, not new immigrants. Answer: To be inserted in Discussion section. Health care professional awareness no assumption that westernization exempts values from their own culture * 3.2 Follow-up care: * please explain why 75 were prescribed hormone therapy (section 3.1) but 79.7% were asked to continue their medications 79.7% (section 3.2) Care Tailored to South Asian Women 6 Answer: This included any medications, including hormone therapy. An explanation was added to section 3.2 * I am a bit concerned about the section on adherence to adjuvant hormone therapy. This was not included in your methods or as a research question. It is not clear how this was assessed or if this was a valid assessment of this. As there were no statistical comparisons conducted, I would avoid stating that groups differed. Answer: The sentence stating that groups differed was omitted. However, SA population may be more compliant because of the manner they view a physician’s status. * Table 1- I would suggest providing the characteristics of the entire sample not by age group. Answer: Table 1 has been modified to include characteristics of the entire sample only. * At the bottom of page 11 and top of page 12 the authors' present data on knowledge of their "cancer centre" or "community". How are these defined? Answer: These definitions have been added to the text. Cancer centre refers to one of the five regional cancer centres in British Columbia where they received their cancer treatments), while community refers to the respondents family doctor, community support groups, etc.) * Was the "meaning of follow-up care" as described on pg 11 assessed using an open-ended question? Answer: Yes. This was added as a specification in the text. * The authors state that 33% of group A answered "not at all" regarding receiving reliable resources regarding BrCa. However, there were only 5 women in this group so this would only represent 1.7 women. Care Tailored to South Asian Women 7 Answer: The number of women this represents was added to the text for added thoroughness. * Section 3.3: * I would avoid saying "of those among who counselling was not required" because this may not be the case-especially since some stated that they didn't know this resource existed. I would prefer this re-written to say "of those who had not accessed counselling resources". Answer: This was re-written as stated above. * Page 12, paragraph 3: 1) How did the authors determine if side-effects lasted more than 6 months? Some of these women were only 3 months post-treatment. Others were 5 years out and so their recall may be biased. Answer: Recall bias is inherent to this study. Some were 3 months post treatment, so these questions would not have been applicable. 2) the data on how prepared women were to mange the physical side effects and if they reported it to a family doctor would be more useful if they were not collapsed and were separated by most common side effects. Answer: Table 3 and 4 separates the data into separate side effects. 3) Finally, at the end of this paragraph the authors have listed physical side-effects "with the most adverse effect on QoL" but it is not clear how QoL was determined? I would have the same type of comments for the next paragraph on the psychosocial impacts lasting more than 6 months after discharge. Answer: Quality of life was not defined specifically and was subject to the patient`s interpretation. Care Tailored to South Asian Women 8 * I would avoid saying that the women had depression based on the one un-validated question used. You could state that they endorsed this item. Answer: This was modified as suggested, in the text. * Section 3.5: * How were the elements to be included in the questionnaire determined and was their an option to add additional items that were not included? Answer: There was an option to add additional items that were not included in the other questionnaire. * How do you explain the high rates of missing data? * Again, I would avoid breaking down by age group as the numbers are too low (i.e. 50% of people in Group A could just mean 2 people). Answer: As mentioned in the discussion, respondents did not answer every question, explaining the high rates of missing data. This was added to the discussion section. Tables * Do not separate out patient characteristics by age group * Please add the n to all % values in all tables. Answer: this was done as specified above.