Abstract
Background
Patient-reported outcome measures for sexual health were often designed for research studies that included only heterosexual, partnered, and cisgender participants; as such, they may have limited applicability for clinical use among sexual and gender minority (SGM) individuals or those without a partner.
Aim
We aimed to conduct cognitive interviews with SGM persons and heterosexual women to determine the readability, comprehension, and applicability of questionnaire items to assess sexual function among diverse sexual and gender identities.
Methods
We conducted 4 rounds of cognitive interviews with 52 participants (28 SGM; 24 cisgender, heterosexual) who provided feedback on the comprehension and wording of questionnaire items and response scales. We used items from the Female Sexual Function Index (FSFI) and focused on establishing content validity of a modified measure. Participants made recommendations for changes to the questionnaire, which was iteratively revised between interview rounds. Two independent coders analyzed the transcripts using structural coding based on 5 predefined codes: satisfaction with item, specificity/language change needed, missing/suggested item, patient definitions of concepts, and confusion with item.
Outcomes
Content validity.
Results
After 3 rounds of cognitive interviews and revisions to the questionnaire, participants found the final version acceptable and understandable, thereby reaching thematic saturation and establishing content validity of the modified FSFI. Modifications included the following: replacing all instances of “sexual stimulation” and “intercourse” with “sexual activity (alone or with a partner),” broadening the definition of “vaginal penetration” beyond penile-vaginal penetration, and adding skip logic to include the option “no sexual activity.” Participants identified missing concepts important to their sexual health, such as use of an external lubricant.
Clinical Implications
The FSFI and similar questionnaires need to be adapted to broader clinical practice populations such that all persons’ experiences are accurately reflected and assessed, ensuring that sexual health needs can be met more inclusively.
Strength and Limitations
A strength of the study was using cognitive interviews engaging patient perspectives, which is considered the gold standard for establishing content validity. One limitation is that participants included predominantly White and highly educated women.
Conclusion
Feedback from interviews supports modifying FSFI items and further psychometric testing, and future studies should evaluate the measure among racially and educationally diverse groups.
Keywords: Female Sexual Function Index, sexual gender minorities, LGBTQ, cognitive interviews
Introduction
Patient-reported outcomes (PROs)—unfiltered reports on a patient’s health condition that come directly from the patient—are considered the gold standard for assessing patient experience, symptom burden, and quality of life.1 However, many commonly used instruments make assumptions about the patient population that can lead to scores no longer being accurate for an individual.2 For example, the International Index of Erectile Function (IIEF)3,4 was developed for research studies where the inclusion criteria were that men had to be in a stable heterosexual relationship and attempting to have penile-vaginal intercourse. The same group of researchers developed the Female Sexual Function Index (FSFI),5 something that can be seen in the shared wording of many items.2 For example, the FSFI asks, “How confident were you about becoming sexually aroused?” while the IIEF asks, “How do you rate your confidence that you could get and keep an erection?” Similarly, the FSFI asks, “How difficult was it to maintain your lubrication . . . until completion of sexual activity or intercourse?” and the IIEF asks, “How difficult was it to maintain your erection to completion of intercourse?” While the FSFI aimed to include “questions [that] were designed to be suitable for use with a heterosexual as well as a homosexual population,”3 it is unclear whether these items were evaluated among sexual and gender minority (SGM) individuals: the original validation study did not collect information on participants’ sexual orientation or gender identities.3
Thus, the FSFI in its current form may not accurately assess sexual function in all patients, such as those who do not have a partner and those who favor forms of sex other than penile-vaginal intercourse. For example, when the FSFI asks about pain during penetration, those who report that they “did not attempt intercourse” are given a score of 0, which is a worse score than “very high pain.” However, the FSFI defines “intercourse” as “penile penetration (entry) of the vagina.” According to this scoring system, patients who do not engage in penile-vaginal intercourse, such as women who have sex with other women, would be considered to have a high level of sexual dysfunction. This clearly limits the measure’s usefulness in clinical settings where it is important to accurately evaluate patients who may come from a diverse population. For broader clinical use, such questionnaires warrant adaptations to ensure that the items are inclusive of diverse patient experiences and needs.2,3,5 This is particularly critical for populations with marginalized identities, who may already feel ostracized in clinical settings. When such patients are asked questions that make incorrect assumptions about their sexual identity or behavior, this may lead to them feeling unwelcome and create a more negative patient experience overall.2,6
In our initial study, we conducted qualitative interviews with SGM persons to understand their perception of the FSFI in its current form.2 They confirmed that the questionnaire was inappropriate for their needs and experiences and that it assumes that the respondent is heterosexual, has a single partner, and favors penile-vaginal intercourse as their primary form of sexual activity.2 Given these findings, we aimed to conduct cognitive interviews among SGM persons and heterosexual, cisgender women to identify potential modifications to the FSFI and determine the readability, comprehension, and applicability of the items. “Cisgender” describes a person whose gender identity corresponds to one’s sex assigned at birth.
The US Food and Drug Administration’s Guidance for Industry: Patient-Reported Outcome Measures—Use in Medical Product Development to Support Labeling Claims stresses the importance of using cognitive interviews with patients to establish content validity—that is, ensuring that the questions asked in these measures relate to what they are supposed to measure in the population of interest.7 Ultimately, our goal was to propose changes to the original FSFI that would make the questions appropriate and inclusive to patients with a broader range of sexual activities and preferences, including SGM.
Methods
Recruitment
The study was approved by the Institutional Review Board at Memorial Sloan Kettering Cancer Center (MSK). Up-front permission to modify FSFI items for use in empirical qualitative research was obtained from the developer. Recruitment was made possible through LGBTQ organizations in the Northeast as well as from a gynecologic oncology clinic at MSK. Eligible patients—aged ≥21 years and able to speak and understand English—either expressed interest in participation by contacting the research coordinator on the recruitment flyer or were invited by Dr Long Roche to participate in the study. The research study coordinator explained the study to each participant, including the fact that sensitive and personal issues would be discussed, and provided them with an information sheet with a unique study identification number and instructions for scheduling a time to conduct the telephone interview. The voluntary nature of participation and the freedom to withdraw from the study or refuse to answer questions at any time were emphasized. Upon completion of the study, participants received a $50 gift card.
Data collection
We conducted 4 rounds of cognitive interviews with 52 participants (SGM: n = 13 in round 1, n = 14 in round 2; cisgender, heterosexual: n = 15 in round 1, n = 10 in round 2). Participants provided feedback on their comprehension and wording of FSFI items and response scales and made recommendations for changes to the questionnaire, which was revised in between interview rounds and in discussions with a multidisciplinary study team.
Success was defined by recruiting 15 participants to the first round of cognitive interviews and 15 to the second round—or as many participants as needed to reach content saturation, when no new content is generated by the data collected from the interviews. Guest et al noted that data saturation may be attained by as few as 6 interviews, depending on the sample size of the population, whereas sampling should be purposive and diverse to adequately represent subject experience across the target population.8 For this reason, we aimed for 15 participants in each round.
Cognitive interviewing is a multistage process where a research staff member asks the participant about one’s comprehension and interpretation of all aspects of the questionnaire. Since the 1980s, this form of qualitative testing has been a widely accepted method for content validity of questionnaires in diverse areas of medical and psychological research.9 Clinical research coordinators (CRCs; M.D.A., T.L.), trained by a qualitative methods specialist (QMS) at MSK (K.A.L.), conducted all interviews over the telephone. According to the interview guide developed for this study, the CRCs asked 2 types of questions: “to be evaluated” questions (eg, prompts about specific items) and “probe” questions (general or concept specific). Sample questions included “Can you tell me in your own words what this question is asking you?” and “Did you find any of the questions confusing?” For testing specific questions, the research assistant asked “probe” questions, such as “What, to you, is meant by lubrication?” (to determine comprehension) and prompted participants to clarify, “Tell me more about that” (expanded explanation that served to tap multiple cognitive processes). Interviews lasted for approximately 45 to 60 minutes. The CRCs took handwritten notes and audio recorded each interview using MSK-approved encrypted digital recording equipment. After the interview, the CRC listened to the recording again to identify and document key areas of confusion and concern that the participant had raised for each section of the questionnaire, referencing direct quotes from the audio recording in a summary report.
Analytic methods
Following the completion of each interview, the CRC summarized the results for that interview and performed structural coding (ie, extracting the relevant information in each summary and placing it with similar comments made in other interviews).10
The summary reports from the interviews were then coded to determine instances of patient problems or difficulties, which would be used as a basis for determining whether questions are functioning as intended or need to be rephrased. For example, confusing words could be replaced with colloquial terms or clarified by adding parenthetical citations. The coding process was led by the QMS who trained the CRCs on the process of structural coding. CRCs and the QMS then independently coded all transcripts, meeting regularly to build consensus and resolve discrepancies in the coding schema. This approach to cognitive interviewing analyses follows that of previous measure adaptation studies.11 Each aspect of the measure that had at least 3 instances of being problematic, as identified by the patients, was revised for testing in a second round of cognitive interviewing, with a different set of participants but with the same protocol as the first. The use of 3 as the threshold for interim modification is a recommended practice for cognitive interviews to establish content validity.12 Criteria or thresholds for acceptance of a questionnaire included (1) resolution of major barriers to comprehension in the following round and (2) consensus within the study team that the question is functioning as intended (ie, interpretability).
The measure went through the following iterations throughout the study:
Original FSFI wording: September 2018
Proposed changes after SGM round 1: February 2019
Proposed changes after SGM round 2: August 2019
Proposed changes after cisgender, heterosexual round 1: April 2020
Final proposed changes after cisgender, heterosexual round 2: March 2021
Analysis of each round of interviews was performed independently by 2 members of the research study team (a CRC and the QMS). Transcripts were reviewed independently by each researcher and manually coded. Structural coding was based on 5 predefined codes and definitions:
Satisfaction: the participant expresses satisfaction with the item in its current form.
Specificity/language change needed: the participant notes that an item is vague or uses inappropriate or inaccurate language.
Missing/suggested item: the participant identifies a missing item or suggests an item.
Patient definition: the participant describes the item in one’s own words.
Confusion: the participant is confused by an item.
The 2 members of the research team then met to review the coding, and a summary document was prepared for each meeting with key reference quotes included for each section. After coding and the consensus discussion were complete, a secondary analysis was completed by combining the consensus documents and reviewing each section for common themes with the study principal investigator (S.V.C.). After the analysis phase of each round, the full research team met on several occasions to discuss the findings and reach consensus on what changes to make to the FSFI for the next round of testing. The research team agreed on making several changes to the FSFI based on participant feedback, while adding several conceptual and exploratory questions to the end of the interview guide to add context to the emerging themes in the subsequent rounds.
Results
Participant characteristics are shown in Table 1. The study sample comprised 28 (54%) participants who identified as SGM and 24 (46%) who identified as cisgender and heterosexual. The median age was 43 years (IQR, 26-54).
Table 1.
Participant characteristics (N = 52).
| No. (%) | |
|---|---|
| Age, y, median (IQR) | 43 (26-54) |
| Prior cancer diagnosis | 36 (69) |
| Gender | |
| Female | 48 (92) |
| Nonbinary | 2 (3.8) |
| Transgender female | 1 (1.9) |
| Gender neutral | 1 (1.9) |
| Sexual orientation | |
| Heterosexual | 24 (46) |
| Lesbian/gay | 17 (33) |
| Bisexual | 4 (7.7) |
| Queer/demipansexual/pansexual/sexually fluid | 7 (13) |
| Marital status | |
| Single | 19 (37) |
| Partnered/married/multiple partners | 31 (60) |
| Divorced | 1 (1.9) |
| Missing | 1 (1.9) |
| Race | |
| African American | 4 (7.7) |
| Asian | 2 (3.8) |
| White | 46 (88) |
| Ethnicity | |
| Hispanic | 2 (3.8) |
| Non-Hispanic | 50 (96) |
| Education | |
| High school or some college | 6 (12) |
| Bachelor or associate degree | 21 (40) |
| Graduate level | 24 (46) |
| Missing | 1 (1.9) |
Content saturation was achieved after 2 rounds of cognitive interviews, each with SGM and heterosexual participants. The final version of the questionnaire was found to be acceptable and understandable. Table S1 details the final suggestions for modifications to FSFI items, as elicited through direct participant interviews during the 4 iterative interview rounds. SGM persons’ general perceptions of the FSFI were reported in a separate qualitative analysis.2
Global changes across the FSFI measure
Inclusive language
Across rounds, participants emphasized that sexual activity could take multple forms. Thus, participants suggested expanding the definition of “sexual activity” to include self, multiple partners, and activities other than penetrative vaginal sex. As recommended by the SGM participants in the first 2 rounds, all instances of “sexual stimulation” and “intercourse” were replaced with “sexual activity (alone or with a partner).” They also thought that the singular term “partner” should be changed to “partner(s),” not to assume that a person has only 1 partner. Heterosexual individuals in the subsequent 2 rounds accepted these changes without modifications.
Recall period
SGM participants suggested changing the recall period from 4 weeks (“Over the past 4 weeks . . . ”) to 3 months (“Over the past 3 months . . . ”). Several participants felt that it was diffcult to assess patterns in sexual function over a 1-month time frame, given that the average menstrual cycle lasts about 4 weeks. In addition, participants felt that patterns of sexual activity can vary, especially for individuals who are not partnered. Heterosexual participants agreed that this recall period is feasible and acceptable.
Skip logic
The response option “no sexual activity” was added to every question (where applicable) in round 1 after participant feedback. In round 4, some participants suggested adding the option to select “no sexual activity” at the start of each domain, instead of including it as a response option in each question—in the words of 1 participant: “[Seeing] ‘no sexual activity’ over and over again: no I’m not having sex, no I’m not having sex, no! I’m not having sex!” As a result, the “no sexual activity” response option was removed and instead incorporated by using skip logic, meaning that the respondents filling out the questionnaire continue to the next questions in that domain only if the answer to the first question applies to their experience. For example, if the question asks, “Over the past 4 weeks, did you engage in vaginal penetration (putting something in your vagina)?” and the respondents answer “yes,” they continue to the next few questions; if the respondents answer “no sexual activity,” they skip the subsequent questions.
Response scales and item prompts
Likert scale items “almost always or always” and “almost never or never” were condensed to “almost always” and “almost never,” after participant feedback. Certain words (eg, “how often,” “how difficult”) were bolded to highlight what was being asked.
Finally, response options were changed. For instance, instead of asking respondents to rate their level or degree of discomfort or pain during vaginal penetration on a scale from “very high” to “very low,” the revised response options ask them to rate their pain on a scale from “very severe pain” to “no pain at all.”
Order of domains
Participants suggested reordering domains based on perceived clinical relevance. The final proposed order of the revised FSFI is as follows: pain with penetration, desire and arousal, lubrication, orgasm, and satisfaction.
Addition of a global item
Several participants suggested including a general question to assess their sexual health concerns. The summary question “How much does your sexual function affect your well-being?” was added to the end of the revised measure, within the satisfaction domain. A free-response question was also added to give patients the opportunity to bring up any additional topics of concern: “Is there anything else you would like to share with (us/your health provider) about your experiences?”
FSFI domain-specific changes
Desire and arousal
Items in the desire and arousal domain were simplified with direct language that better aligned with the response scales. The first 2 items—“Over the past 4 weeks, how often did you feel sexual desire or interest?” and “Over the past 4 weeks, how would you rate your level (degree) of sexual desire or interest?”—were condensed to 1: “Over the past 3 months, how interested have you been in sex?” In addition, “Rate your level (degree) of sexual desire or interest” was changed to “How interested have you been in sex?”
The item “Over the past 4 weeks, how confident were you about becoming sexually aroused during sexual activity or intercourse?” was removed because of feedback from participants that they did not perceive the construct “confidence” to be relevant to their sexual functioning.
In the original wording, “arousal” was accompanied by the clarifying term “(excitement).” While generally understandable, it was viewed by the SGM population as male oriented and instead changed to “getting turned on” to make the term less gendered. Some heterosexual participants in round 3 were offended by the phrase “turned on” and suggested putting it in quotation marks to indicate slang. One woman said, “There has to be something else that you can use that’s not the words ‘turned on.’ Because to me, I feel like women a lot of times are so marginalized with their ‘not tonight,’ so we’re not a switch. You can’t turn us off and then turn us on.” However, in round 4, we reverted to using parentheses instead of quotation marks for all clarifying terms, for consistency and clarity. Round 4 participants confirmed that including clarifying terms in parentheses was acceptable.
Lubrication
The response option “I don’t need to become wet for the type of sex I have” was added to each item in this domain. Some participants pointed out that lubrication was not necessary for the type of sex that they were having such that lack of lubrication during sexual activity was not necessarily a clinical issue. Since several women indicated that lubrication was not always needed, they suggested adding the explanatory language “when you needed it.”
The word “lubrication” was a difficult term for some participants, and among others it caused confusion about whether the item was referring to lubrication produced by one’s body or from an external lubricant. Therefore, explanatory wording was added, and several versions were tested and probed on across the 4 interview rounds. Some SGM participants felt that the word “lubricated” was too clinical, while some heterosexual participants found the word “wet” to be too colloquial. This landed in use of the more clinical phrase “naturally lubricated,” with “wet” as a clarifying term: “How often did you become naturally lubricated (wet) during sexual activity when you needed it?”
To simplify the language, the item “How often did you maintain your lubrication (‘wetness’) until completion of sexual activity or intercourse?” was changed to “How often were you able to stay naturally lubricated (wet) for as long as you need to?”
In the lubrication domain, 2 questions were added according to participants’ feedback. Participants felt that it was important to add a perception of change in the item to fully capture their concerns: “Over the past 3 months, did you notice any changes in how naturally lubricated (wet) you became during sexual activity?” They also identified use of external lubricant as a missing item and suggested adding “Over the past 3 months, how often did you use a lubricant (lube), such as K-Y Jelly?”
Orgasm
Over the 4 rounds of cognitive interviews, there was divergence over the term “climax”: some viewed it as a useful clarifier while others saw it as “romanticized” or “goal oriented.” This word was therefore removed and the wording simplified from “How often did you reach orgasm (climax)?” to “How often did you orgasm?” Participants confirmed that the term “orgasm” was understandable and that a clarifying phrase was not needed.
Participants expressed concern that not all women experience orgasm the same way or with the same frequency and that a person’s experience of orgasm could very well have changed after a treatment or with age. Therefore, the following item was added to assess respondents’ perception of change: “Over the past 3 months, have you noticed any change in orgasm during sexual activity, by yourself or with a partner(s)?”
Emotional closeness
Most participants found emotional closeness to be a valuable category and appreciated the domain’s differentiation from sexual satisfaction. However, the wording of the “emotional closeness” item—“How satisfied have you been with the amount of emotional closeness during sexual activity between you and your partner?”—and corresponding response categories also evoked strong reactions from participants who felt that the language was either insensitive or confusing. One person said, “I don’t like how they’re saying emotional closeness is not important to me . . . there are people that have been through trauma, and it’s not that it’s not important to them . . . it’s just that they can’t. So I really don’t like how that question is phrased.” Another person said, “Then you’re going from does having sex make you feel emotionally close, to how satisfied are you . . . well what does that mean? Satisfied because I felt that closeness, or because I was able to orgasm . . . what do they want to know?”
The wording was therefore simplified to “Did having sex make you feel emotionally satisfied?” since the amount of emotional closeness was difficult for participants to conceptualize. It was suggested that “emotional closeness” be replaced with “emotional satisfaction.” Many participants pointed out that some people do not necessarily care about emotional closeness with a sexual partner; rather, “emotional satisfaction” seemed like a more precise phrase for what was intended to be assessed. One participant illustrated this by saying, “Emotionally close to your partner(s) . . . it is more ‘emotionally satisfied.’ . . . Because again, that’s an assumption that everybody who is having sex is having sex to feel closer to the person they are having sex with. And I think that there’s a lot of sex going on that has nothing to do with wanting to be close to someone.”
While the phrase “partner” is gender neutral, participants noted that there may be a difference between a sexual partner and an emotional partner; therefore “partner” was changed to “sexual partner(s).”
Two items pertaining to satisfaction with one’s sexual relationship with a partner and overall sexual life were reduced to 1 item to optimize the wording and be more inclusive of all experiences: “Over the past 3 months, how satisfied have you been with your sexual experiences overall?”
Pain with penetration
The domain for pain with penetration was moved to the beginning of the questionnaire to emphasize its clinical importance. One participant expressed, “It’s nice to actually read [these questions]. Nobody’s ever asked them before. It’s something that I’ve said to a number of doctors that don’t really seem to address it, so it’s nice to see that it’s in writing.”
The term “vaginal penetration” was clarified in parentheses: “(inserting something into your vagina during sexual activity, for example, penis, fingers, toys).” In the response scale, the word “intercourse” was changed to “vaginal penetration.” The wording “pain during” was changed to “pain during or after” vaginal penetration.
Similar to other domains where participants were asked to rate their level of symptomatology, “Rate your level (degree) of discomfort or pain during vaginal penetration” was changed to simpler language as “How much pain did you have?”
The question “Over the past 3 months, did you engage or attempt to engage in vaginal penetration (inserting something into your vagina during sexual activity, for example, penis, fingers, toys)?” was added at the beginning of the domain so that participants could skip this section if it did not pertain to them. The phrase “or attempt to engage” was added to cover the cases in which participants might not be able to fully engage in penetration due to pain but attempted to do so. One participant said, “You could be attempting and then not doing it because it hurts, and the frequency of your attempts still feels important.”
Discussion
In this study, we conducted a series of 4 cognitive interview rounds with SGM and heterosexual persons regarding their comprehension and acceptability of a commonly used sexual function questionnaire: the FSFI. Direct cognitive interview data supported modifying FSFI items. It is apparent that this PRO questionnaire, developed 20 years ago, would benefit from being adapted so that it could be used with the more diverse populations currently seen in clinical practice. If the questionnaire were to adequately reflect and address SGM persons’ and heterosexual women’s experiences, then it could help clinicians meet the needs of patients with a broader range of sexual health needs. The reliability and validity of these modifications can be evaluated in further quantitative psychometric testing.
Our study highlights a critical need to adapt and simplify the language used in common PRO tools currently in clinical practice to improve readability and comprehension among all patients. PROs need to be appropriately adapted to the target population.
Prior attempts have been made to modify FSFI items to include sexual minority women. For instance, Boehmer et al omitted the word “intercourse” from the FSFI and slightly modified the language of 3 items about vaginal penetration.13 However, these prior attempts primarly used a top-down approach—investigator-made changes—rather than a bottom-up approach, engaging patient perspectives.
This bottom-up approach is a strength of the present study, where we used the cognitive interviews for data collection and analysis, as this is gold standard for establishing content validity. Per US Food and Drug Administration regulatory guidance, cognitive interviewing is an essential step to evaluate patient understanding in direct support of establishing the content validity of a PRO.7 By using this approach, the present study was able to elicit important information about participant priorities, concerns, and terminology used in discussing sexual function. Interviews allowed participants to identify missing concepts important to their sexual health, such as the use of external lubricant, emotional satisfaction, and overall well-being.
This study identfied the need for inclusive language in sexual function questionnaires. In our proposed revised FSFI, all instances of “sexual stimulation” and “intercourse” are replaced with “sexual activity (alone or with a partner),” and the definition of “vaginal penetration” was expanded beyond penile-vaginal intercourse.
The proposed revised FSFI reorders the domains based on participant concerns and priorities identified across cognitive interview rounds. Notably, the domain concerning pain with penetration was moved to the beginning of the questionniare. Participants felt that in their experience, pain associated with female sexual function had often been overlooked or underassessed but that their experience of pain informs many other aspects of their sexual function, such as desire and arousal, lubrication, orgasm, and satisfaction. This is in line with previous studies suggesting that female sexual dysfunction is often overlooked in clinical practice, despite it being a common problem, affecting an estimated 20% to 40% of women.14 All of the aforementioned modifications may not have been proposed had patient perspectives not been engaged.
Limitations include that the study sample was predominantly White and highly educated women. While the sample size was large for qualitative interviews, which would increase the representativeness, the results may not necessarily represent the views from a broader cross section of the community; that is, language that is acceptable to our participants may not be acceptable to those from a more diverse group.
Future directions
There are other important aspects of inclusiveness that our study is unable to address directly, such as health literacy and languages used by different ethnic groups. Prior study has suggested that individuals with lower literacy levels have difficulty comprehending terms such as “aroused,” “orgasm,” and “vaginal penetration.”15 Furthermore, the recall period was modified from 4 weeks to 3 months based on participant feedback. However, we note that 4 weeks is the standard recall period for PRO tools, so this time frame should be evaluated in future psychometric testing, particularly with respect to recall accuracy.
Conclusion
Feedback from direct interviews supports modifying FSFI items and further psychometric testing. Commonly used PRO sexual function questionnaires such as the FSFI have severe limitations. Questionnaires must accurately reflect the experiences and sexual health needs of SGM persons and heterosexual women so that the questionnaires can be used in research and clinical care settings to meet the needs of a broader population than currently. We call for further research to design and validate questionnaires that assess female sexual function.
Supplementary Material
Acknowledgments
We sincerely thank the organizations who helped with recruitment of study participants: Liz Margolies (National LGBT Cancer Network), National LGBT Cancer Project, LGBT Elder Initiative, The LOFT LGBTQ+ Community Center (LGBT Life Westchester), Christine Benjamin LMSW (SHARE Cancer Support), Young Survival Coalition, Rosara Torrisi (Long Island Institute of Sex Therapy), LGBTQ+ Pride Employee Research Network at Memorial Sloan Kettering Cancer Center, Sean Mungovan (The Clinical Research Institute).
Contributor Information
Kathleen A Lynch, Department of Psychiatry and Behavioral Sciences, Memorial Sloan Kettering Cancer Center, New York, NY 10017, United States; School of Global Public Health, New York University, New York, NY 10003, United States.
Mia D Austria, Department of Epidemiology and Biostatistics, Memorial Sloan Kettering Cancer Center, New York, NY 10017, United States.
Tiffany Le, Department of Medicine, Memorial Sloan Kettering Cancer Center, New York, NY 10065, United States.
Chasity Burrows Walters, Department of Patient and Community Education, Memorial Sloan Kettering Cancer Center, New York, NY 10065, United States.
Andrew Vickers, Department of Epidemiology and Biostatistics, Memorial Sloan Kettering Cancer Center, New York, NY 10017, United States.
Kara Long Roche, Department of Gynecologic Oncology, Memorial Sloan Kettering Cancer Center, New York, NY 10065, United States.
Thomas M Atkinson, Department of Psychiatry and Behavioral Sciences, Memorial Sloan Kettering Cancer Center, New York, NY 10017, United States.
Sigrid V Carlsson, Department of Epidemiology and Biostatistics, Memorial Sloan Kettering Cancer Center, New York, NY 10017, United States; Department of Surgery (Urology Service), Memorial Sloan Kettering Cancer Center, New York, NY 10065, United States; Department of Urology, Institute of Clinical Sciences, Sahlgrenska Academy at University of Gothenburg, Gothenburg 41345, Sweden.
Author contributions
Conceptualization: S.V.C., A.V., C.B.W., T.M.A., K.A.L. Methodology: K.A.L., S.V.C., A.V. Validation: K.A.L., M.D.A., T.L. Formal Analysis: all authors. Investigation: K.A.L., M.D.A., T.L. Resources: K.L.R., C.B.W. Data curations: K.A.L., M.D.A., T.L. Writing–original draft: M.D.A., K.A.L., S.V.C. Writing–review and editing: all authors. Visualization: M.D.A., K.A.L., S.V.C. Supervision: S.V.C. Project administration: S.V.C., A.V., K.L.R., C.B.W. Funding acquisition: S.V.C.
Funding
The study was supported by research grants from the Patty Brisben Foundation for Women’s Sexual Health. The authors’ work on this paper was supported in part by funding from a National Institutes of Health/National Cancer Institute core grant to Memorial Sloan Kettering Cancer Center (P30-CA008748).
Conflicts of interests: S.V.C. has received lecture honorarium and travel reimbursement from Ipsen. No other author has any conflict of interest to disclose.
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