Take Our Healthcare Stress Survey
Take our healthcare stress survey and help us quantify the challenges patients face!
We recognize that the patient voice has been missing for far too long. The medical system is stressful and complicated for patients and their families. For this reason, we embarked on an effort to quantify the impact of stressors in navigating the healthcare system on patients and systems. We hope that this research leads to solutions.
Millions of Americans living with chronic pain and suffer from functional impairment and disability. The stressors of chronic pain span many domains, including interference with daily activities, sleep, psychological well-being, loss of employment, access to pain care, and medical bills, to name a few (1). Individuals with chronic pain struggle when interacting with the healthcare system, where they complain that providers do not believe that they have pain, or the available treatments don’t work well. Women report a pressure to appear credible when discussing pain with their doctor (2, 3). Qualitative studies reveal that patients report feeling disrespected and suspected of drug seeking, having trivial complaints, difficult securing medications, having limited treatment options, and being treated as “burdensome” by care providers (4). Additional systemic variables include long wait times, limited access to providers, and difficulties with accessing medical records (4).
To develop and assess the preliminary validity of a scale aimed at capturing the stress experienced by patients with chronic pain within the healthcare system. Our methods are patient-centered and will include patient and stakeholder’s input through qualitative and quantitative methods.
What we have done to date
To date, we have interviewed over 34 patients who suffer from chronic pain from all over the U.S. to learn about their experiences and challenges in navigating the healthcare system and to get their feedback on the initial item list for the scale.
We also conducted an expert panel of physicians, psychologists, nurses and social workers for their input on the challenges patients with chronic pain face while interfacing with the medical system.
How can you participate today?
How you can reach us
Impact on Healthcare
Patients are constantly experiencing marginalization in the healthcare system, especially those with chronic pain. We measure the multidimensional impact of pain and stress in patients’ lives, but we do not quantify the stress caused by the healthcare system and associated complexities. In developing this instrument, it will allow us to reveal how the patient’s experience of the healthcare system should be assessed as a potentially critical predictor for pain outcomes, treatment, and more broadly for health.
1. Driscoll et al. Patient experiences navigating chronic pain management in an integrated health care system: A qualitative investigation of women and men. Pain Med 2018; 9: S19–S29. doi: 10.1093/pm/pny139
2. Werner A, Malterud KK. It is hard work behaving as a credible patient: Encounters between women with chronic pain and their doctors. Soc Sci Med 2003;57 (8):1409–19.
3. Hoffmann DE, Tarzian AJ. The girl who cried pain: A bias against women in the treatment of pain. J Law Med Ethics 2001;29(1):13–27.
4. Upshur CC, Bacigalupe G, Luckmann R. “They don’t want anything to do with you”: Patient views of primary care management of chronic pain. Pain Med 2010;11(12):1791–8.