From Symptoms to Diagnosis: Mapping the Pelvic Pain Patient Journey Through Social Media to Identify Diagnostic Delays, Unnecessary Testing, and Missed Opportunities for Early Physical Therapy Referral
Area of Research
Physical Therapy
Description
INTRODUCTION: Chronic pelvic pain is a common yet poorly understood condition affecting individuals of both genders. One of the central challenges is that there is no single medical specialty responsible for evaluating and treating pelvic pain. This lack of specialty ownership contributes directly to prolonged diagnostic delays. The purpose of this study is to examine the diagnostic experiences of individuals with pelvic pain using an anonymous online survey distributed through multiple pelvic pain social media platforms. The project aims to document which type of clinician patients will see, which diagnostic tests they undergo most commonly, how long it takes to receive a diagnosis, if one is received, and how they learn about pelvic floor physical therapy, along with the out-of-pocket expenses during their medical journey toward diagnosis and treatment. This study is designed as a pilot.
METHOD: This study will use an anonymous, cross-sectional online survey administered through SurveyMonkey. Recruitment occurred through pelvic pain social media sites using Facebook groups and Reddit communities where individuals share their experiences. The survey, IRB Exempt Category 2, will assess symptom onset, diagnostic timeline, clinician types consulted, diagnostic tests performed, timing of PFPT referral, financial burden, and satisfaction with care.
RESULTS: 24/25 respondents met inclusion criteria and completed the survey in its entirety, yielding a completion rate of 96%. While receiving the correct diagnosis is the most important way to start treatment, over (18.6%) participants noted conflicting diagnoses. Most participants (83.33%) received at least one diagnosis. The mode from onset to formal diagnosis was 3-5 years, (30.43%). Participants reported consulting an average of 3.9 ± 2-5.0 healthcare providers prior to a correct diagnosis. The healthcare professional that assisted in correctly diagnosing participants were gynecology at (39.13%), along with urogynecology and pelvic health physical therapy were tied at (13.04%). If not referred by a physician (63.64%), most patients were self-referred to pelvic health physical therapy via social media with the most popular being Reddit (34.78%), followed by Instagram (13.04%), YouTube (8.7%), Podcasts (8.7%) Facebook (4.45%) and TikTok (4.35%). The economic burden and outlay for patients out-of-network expenses totaled on average of $13,965/per person.
DISCUSSION/CONCLUSION: Pelvic health physical therapy (PHPT) emerged as one of the leading provider types reported to offer meaningful benefit to individuals with chronic pelvic pain. Participants most frequently identified PHPT as effective in addressing pain-related complaints when compared with other healthcare providers.
From Symptoms to Diagnosis: Mapping the Pelvic Pain Patient Journey Through Social Media to Identify Diagnostic Delays, Unnecessary Testing, and Missed Opportunities for Early Physical Therapy Referral
INTRODUCTION: Chronic pelvic pain is a common yet poorly understood condition affecting individuals of both genders. One of the central challenges is that there is no single medical specialty responsible for evaluating and treating pelvic pain. This lack of specialty ownership contributes directly to prolonged diagnostic delays. The purpose of this study is to examine the diagnostic experiences of individuals with pelvic pain using an anonymous online survey distributed through multiple pelvic pain social media platforms. The project aims to document which type of clinician patients will see, which diagnostic tests they undergo most commonly, how long it takes to receive a diagnosis, if one is received, and how they learn about pelvic floor physical therapy, along with the out-of-pocket expenses during their medical journey toward diagnosis and treatment. This study is designed as a pilot.
METHOD: This study will use an anonymous, cross-sectional online survey administered through SurveyMonkey. Recruitment occurred through pelvic pain social media sites using Facebook groups and Reddit communities where individuals share their experiences. The survey, IRB Exempt Category 2, will assess symptom onset, diagnostic timeline, clinician types consulted, diagnostic tests performed, timing of PFPT referral, financial burden, and satisfaction with care.
RESULTS: 24/25 respondents met inclusion criteria and completed the survey in its entirety, yielding a completion rate of 96%. While receiving the correct diagnosis is the most important way to start treatment, over (18.6%) participants noted conflicting diagnoses. Most participants (83.33%) received at least one diagnosis. The mode from onset to formal diagnosis was 3-5 years, (30.43%). Participants reported consulting an average of 3.9 ± 2-5.0 healthcare providers prior to a correct diagnosis. The healthcare professional that assisted in correctly diagnosing participants were gynecology at (39.13%), along with urogynecology and pelvic health physical therapy were tied at (13.04%). If not referred by a physician (63.64%), most patients were self-referred to pelvic health physical therapy via social media with the most popular being Reddit (34.78%), followed by Instagram (13.04%), YouTube (8.7%), Podcasts (8.7%) Facebook (4.45%) and TikTok (4.35%). The economic burden and outlay for patients out-of-network expenses totaled on average of $13,965/per person.
DISCUSSION/CONCLUSION: Pelvic health physical therapy (PHPT) emerged as one of the leading provider types reported to offer meaningful benefit to individuals with chronic pelvic pain. Participants most frequently identified PHPT as effective in addressing pain-related complaints when compared with other healthcare providers.