Vulvovaginal Pain Experiences: Race and Healthcare Seeking

Principal Investigator(s):  View help for Principal Investigator(s) Olivia Adams, Indiana University; Amanda Gesselman, Indiana University

Version:  View help for Version V1

Name File Type Size Last Modified
CVVP&MedicalMistrust_openICPSR_12.23.2022.sav application/x-spss-sav 4.1 MB 12/23/2022 08:35:AM

Project Citation: 

Adams, Olivia, and Gesselman, Amanda. Vulvovaginal Pain Experiences: Race and Healthcare Seeking. Ann Arbor, MI: Inter-university Consortium for Political and Social Research [distributor], 2022-12-23. https://doi.org/10.3886/E183665V1

Project Description

Summary:  View help for Summary "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. 

Scope of Project

Subject Terms:  View help for Subject Terms sexual health; reproductive health; medical mistrust
Geographic Coverage:  View help for Geographic Coverage United States
Time Period(s):  View help for Time Period(s) 9/2021 – 10/2021
Collection Date(s):  View help for Collection Date(s) 9/2021 – 10/2021
Universe:  View help for Universe 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
Data Type(s):  View help for Data Type(s) survey data; text
Collection Notes:  View help for Collection Notes 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. 

Methodology

Response Rate:  View help for Response Rate Participants were recruited via the Internet. 671 participants initiated the survey, and 497 participant responses were maintained for data analysis following data cleaning. 
Sampling:  View help for Sampling Internet-based convenience sample. 
Data Source:  View help for Data Source Online survey
Collection Mode(s):  View help for Collection Mode(s) web-based survey
Scales:  View help for Scales Validated Scales:
  • McGill Pain Questionnaire
  • Female Sexual Distress Scale-Revised
  • Chronic Pain Acceptance Questionnaire 8-Item
  • Group Based Medical Mistrust Scale

Demographic items:
  • 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 
  • intensity, 0 to 10 point scale
  • pain experiences in certain contexts (e.g., sexual vs. non sexual, avoiding certain activities), measured on a 5-point Likert scale
  • duration of pain (e.g., since puberty, after specific event, etc.) 
Ad hoc items related to healthcare avoidance 
  • 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 
  • 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
  • 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 
  • various items on sources of perceived discrimination, 5-point Likert scale
  • item 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
  • mix of 7-point Likert scale items, fill in responses, and yes/no 
Ad hoc items related to COVID-19
  • mix of drop down list and select all that apply and 7-item Likert scale items 


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V1 [2022-12-23]

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