DOI: 10.3886/e183665v1
title: Vulvovaginal Pain Experiences: Race and Healthcare Seeking

description: "Vulvovaginal Pain Experiences: Race and Healthcare Seeking" was an exploratory cross sectional survey designed to explore the experiences of people of color with chronic vulvovaginal pain (CVVP) related to the quality and intensity of their pain in various contexts, the effect of their CVVP on general sexual function, the effect of their CVVP on their relationships, their experiences managing a chronic pain condition, their experiences attempting to seek treatment, and their perceptions of medical mistrust. The survey included both ad hoc items and validated psychometric measures, including the McGill Pain Questionnaire, the Female Sexual Distress Scale-Revised, the Chronic Pain Acceptance Questionnaire 8-Item, and the Group Based Medical Mistrust Scale (GBMMS). A primary goal of this study was to better understand the experiences of people of color with CVVP, defined as any person who identifies as a race and/or ethnicity other than White non-Hispanic/Latinx. Additionally, this study aimed to examine associations between perceptions of medical mistrust measured via the GBMMS and healthcare seeking outcomes related to diagnostic delay.
description: Response Rates: Participants were recruited via the Internet. 671 participants initiated the survey, and 497 participant responses were maintained for data analysis following data cleaning.
description: Presence of Common Scales: Validated Scales:<br>McGill Pain QuestionnaireFemale Sexual Distress Scale-RevisedChronic Pain Acceptance Questionnaire 8-ItemGroup Based Medical Mistrust Scale<br>Demographic items:<br>age, gender, transgender status, sex assigned at birth, race, ethnicity, relationship status, sexual orientation, education level, chronic vulvovaginal pain diagnosis) Ad hoc items related to pain <br>intensity, 0 to 10 point scalepain experiences in certain contexts (e.g., sexual vs. non sexual, avoiding certain activities), measured on a 5-point Likert scaleduration of pain (e.g., since puberty, after specific event, etc.) Ad hoc items related to healthcare avoidance <br>pelvic exam (yes once, yes more than once, no) leaving an appointment early (same as above) avoiding a follow-up appointment (same as above) Ad hoc items related to healthcare seeking <br>sought/received formal diagnosis/misdiagnosis (yes/no) number of providers seen (yes/no and fill in) type of provider seen, most/least helpful provider (drop down menu, check all that apply)provider referrals (drop down menu, check all that apply) time to begin treatment seeking/time to receive diagnosis (7-item scale, 1 month to over 5 years) attempts with formal/informal treatment (yes/no and open-ended)Ad hoc items related to health information seeking<br>sources of information (drop down menu, check all that apply)most/least helpful sources (drop down menu, check all that apply) Ad hoc items related to perceived discrimination in healthcare encounters <br>various items on sources of perceived discrimination, 5-point Likert scaleitem on discussing health problems with family/friends vs. provider, (yes, no, I don't know, n/a, and open-ended) Ad hoc items related to partner communication around CVVP<br>mix of 7-point Likert scale items, fill in responses, and yes/no Ad hoc items related to COVID-19<br>mix of drop down list and select all that apply and 7-item Likert scale items <br>
description: Internet-based convenience sample.
description: English speaking adults with chronic vulvovaginal pain (CVVP) conditions (e.g., vulvodynia), age 18-55 with no history of perimenopause or menopause, and identified as a person of color.
description: web-based survey; Analysis of this dataset typically excluded all individuals who selected "male" for the "sex assigned at birth" item, but this participant data are still included in the uploaded data file.