Author's response to reviews

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1 Author's response to reviews Title: A qualitative study of Ottawa university students' awareness, knowledge and perceptions of infertility, infertility risk factors and assisted reproductive technologies (ART) Authors: Kelley-Anne Sabarre (ksaba092@uottawa.ca) Zainab Khan (zkhan@qmed.ca) Amanda N Whitten (awhit036@uottawa.ca) Olivia Remes (olivia.remes@alumni.uottawa.ca) Karen P Phillips (Karen.Phillips@uottawa.ca) Version: 5 Date: 15 August 2013 Author's response to reviews: see over

2 August 15, To whom it may concern: Université d Ottawa Faculté des sciences de la santé École interdisciplinaire des sciences de la santé University of Ottawa Faculty of Health Sciences Interdisciplinary School of Health Sciences On behalf of my co-authors, I am pleased to submit further revisions of our manuscript A qualitative study of Ottawa university students awareness, knowledge and perceptions of infertility, infertility risk factors and assisted reproductive technologies (ART) for consideration in Reproductive Health as a Qualitative, Original Research Article. As requested, we have more specifically addressed the comments of Dr. O'Sullivan in both the manuscript text and in response to reviewers (attached). More precise details regarding the methodology, design of the interview guide and analysis have been provided. Our semi-structured interview guide required both frequency analysis and a simple qualitative content analysis. We have added a table describing major themes/subthemes corresponding to interview topics. We hope that these revisions have helped clarify concerns regarding the manuscript. Thank you for your consideration. We look forward to hearing from you, Sincerely, Karen Phillips, PhD Associate Professor, Faculty of Health Sciences, Principal Scientist Institute of Population Health Interdisciplinary School of Health Sciences University of Ottawa 25 University Private, Room 217 Ottawa, Ontario K1N 6N5 (613) ext 8678 Karen.Phillips@uottawa.ca University Private Ottawa ON K1N 6N5 Canada

3 Response to Reviewers (The first set of comments appear below in RED. Our second round of comments/changes to the text as per Dr. O Sullivan s comments appear in BLUE in the marked manuscript) Reviewer: Lucia F O'Sullivan Reviewer's report: This is an interesting paper, straight forward and to-the-point in many respects. It captures young people s understanding of what constitutes infertility and likely causes. I have some notable concerns that I think need to be addressed to bring it closer to readiness for publication. Most notably, I think the assessment is too limited, the analyses are too thin, and the justification for the study is missing. I will outline these below. Major Compulsory Revisions 2. The Introduction makes a case for what [INFERTILITY] infidelity is, but really does not address the main point: How young people understand infertility and its causes. This literature should replace the current review. Young adults generally don t think about infertility and if they do, it is a combination of fact and myth. There are still important gaps in simply ascertaining the baseline knowledge and perception of infertility in young adults- particularly in the area of men s health. Very few studies have even touched on diagnosis and treatment options. ART represents a secondary, but importantly confounding experience for infertile couples. As our study reports, these young adults greatly overstimate the success of ART. The issue of how young people understand infertility is a bit confusing. First we must ascertain the knowledge base. Subsequent studies can be designed to examine where the information/understanding has originating.. in terms of channels of information (parents, teachers, Internet, media). We did not explore the information channels in this study. Most of the literature emphasizes not information channels, but the base knowledge/perceptions of infertility and causes. We did find a reference that suggesting fertility knowledge in young people is derived primarily from education, not experience. This is marked in the text in blue; p. 3-4; lines 80-83; Methods: 3. How was the interview protocol developed and by whom? Why were they not asked how common they perceived infertility to be? This seems to emerge as an important question in the Introduction and Discussion and yet it was never incorporated for some reason. The interview protocol was development by the PI KP Phillips building on some of the reported Swedish quantitative study questions and using an interdisciplinary approach to include aspects of gender/culture perceptions of infertility (not included in this manuscript). No we didn t ask how common infertility was perceived to be. The prevalence of infertility is described in the Introduction to provide context and relevance of this health topic. Marked text, p. 6; lines Likewise, did the authors assess whether they were trying, had tried, or had ever been pregnant before? Seems important to know, right? Especially in a study of infertility. Again, we did not assess these questions as we anticipated our cohort to be in a precontemplative family planning phases as per their developmental lifestage. Participants were asked if they had children or were married, with only one male indicating he had fathered a child. As infertility can affect males and females, this health issue can arise with a new partner, can develop over time and certainly becomes associated with advanced female age. Previous pregnancies or children aren t necessarily indicative of future fertility. As discussed, this was not perceived to be an important topic. So we cannot include much in the text as we do not believe the absence of data collection on pregnancy attempts is related to knowledge of infertility risk factors or potential infertility in the future. We have added in the description of the demographics

4 specifically that we did query participants regarding parenthood status. p.6; line 138. We have added a comment in the Limitations section regarding the lack of data on pregnancy history. p.24; line NVIVO doesn t analyze qualitative data. It is essentially a labelling and sorting program. The text components are still coded by researchers, and it s the coding that needs to be described here. In particular, notably missing from the text is some detail about how many raters there were, and how reliably they coded. Who did the coding? What major themes emerged describe them and how many. What subthemes emerged? How reliably were they coded? Please add the Kappa scores for each theme, if not also the subthemes (some researchers only provide reliability data for primary themes). We have revised the methods. Yes, we used NVIVO to label the data, coding was achieved by three junior research assistants and the PI. Team meetings were used to ascertain coding reliability and to agree upon emerging themes. Frequency of responses was used to identify major themes which are identified in the results. We did not calculate Kappa scores. p. 6-7; lines ; the Analysis section was rewritten to address these points. As described in the text, data was organized by interview topic. Major themes were described in the Results section, organized by interview topic. As this was a semi-structured questionnaire, there were YES/NO questions and responses selected from a list (Table 1). These responses were simply summed, with no qualitative analysis. This table reiterates the list interview questions and the major themes, subthemes. We have added this table (without text references) to the text. Interview Topic Major Theme(s) Text Reference Subtheme(s) Text Reference Define infertility. Inability to have children p.7; line 154 Infertility associated with underlying biological/medical p.7; line How is infertility diagnosed? Causes of female infertility? Causes of male infertility? Diagnosed by doctor Trying and not conceiving Advanced maternal age Lifestyle Low sperm count (women) p. 8; line 173 problem (women) Medical tests p.8; line 175 p.8; line 175 p. 11; line 226 Lifestyle Genetics p. 13; line 269 Genetics p. 13; line Advanced paternal age Lifestyle (women) Infertility options? IVF p.15;line Adoption Artificial insemination Surrogacy Chance that IVF will produce a child Infertility curable? Options in event of personal infertility Moderate-high chance success Infertility curable Adoption IVF Childlessness p. 16; lines Popularity of IVF Skill of physician Expensive, uncertain, arduous p. 17; line 333 Promise of technology Future developments Natural approach Concerns about medication side effects p.11;lines p. 13; lines p. 13; line 272 p. 15; lines p. 16; line 330 p.16; line p. 17; line 354 p. 18; line 369

5 8. My primary concern is the lack of rigour associated with these qualitative data. I am surprised to still review qualitative studies in which the authors seem to have understood analyzing text data (as compared to numerical data) as a free interpretation exercise. This is still a method that incorporates a great deal of rigour and should be as transparent as quantitative studies. I am sorry to say that I simply don t see that here. Our study used a semi-structured interview guide with a mixed of structured questions and open-ended questions. We have attempted to better explain the analysis used in the text during these opportunities to revise the manuscript. The analysis provided, uses a simple qualitative content analysis which we feel enabled identified of major themes. As the PI and supervisor of the coding team, Dr. Phillips ultimately ensured the consistency of coding among the research trainees, with themes agreed upon by consensus. Details of the methodology are explained in the text p. 6-7; lines As suggested, we have added a section to the Limitations section describing how our study may have been improved by different interview guide design which in turn, would require a more rigorous qualitative analysis. p.24-25; lines