Exploring Chronic Pain and Pain Management Perspectives: Qualitative Pilot Analysis of Web-Based Health Community Posts.

BACKGROUND: Patient perspectives are central to the US Food and Drug Administration's benefit-risk decision-making process in the evaluation of medical products. Traditional channels of communication may not be feasible for all patients and consumers. Social media websites have increasingly been recognized by researchers as a means to gain insights into patients' views about treatment and diagnostic options, the health care system, and their experiences living with their conditions. Consideration of multiple patient perspective data sources offers the Food and Drug Administration the opportunity to capture diverse patient voices and experiences with chronic pain. OBJECTIVE: This pilot study explores posts from a web-based patient platform to gain insights into the key challenges and barriers to treatment faced by patients with chronic pain and their caregivers. METHODS: This research compiles and analyzes unstructured patient data to draw out the key themes. To extract relevant posts for this study, predefined keywords were identified. Harvested posts were published between January 1, 2017, and October 22, 2019, and had to include #ChronicPain and at least one other relevant disease tag, a relevant chronic pain management tag, or a chronic pain management tag for a treatment or activity specific to chronic pain. RESULTS: The most common topics discussed among persons living with chronic pain were related to disease burden, the need for support, advocacy, and proper diagnosis. Patients' discussions focused on the negative impact chronic pain had on their emotions, playing sports, or exercising, work and school, sleep, social life, and other activities of daily life. The 2 most frequently discussed treatments were opioids or narcotics and devices such as transcutaneous electrical nerve stimulation machines and spinal cord stimulators. CONCLUSIONS: Social listening data may provide valuable insights into patients' and caregivers' perspectives, preferences, and unmet needs, especially when conditions may be highly stigmatized.

Unmet Sexual Health Needs of Patients and Female Partners Following Diagnosis and Treatment for Prostate Cancer.

BACKGROUND: Prostate cancer (PCa) and its treatment can have significant and pervasive sexual side effects for patients and their partners; however, partner needs are not well understood, and most resources do not incorporate partner priorities. AIM: Our objective was to perform a qualitative study to identify unmet sexual needs of patients and female partners after PCa diagnosis. METHODS: We conducted a qualitative study of posts to the Inspire Us TOO Prostate Cancer Online Support and Discussion Community. Overall, 6,193 posts were identified in the Sexual Health & Intimacy forum of the community, of which 661 posts were from female authors. A random sample of 10% (n = 66) of posts from female partners and an equal number of randomly selected posts from male patients were analyzed. OUTCOMES: We assessed sexual health themes among patients and female partners. RESULTS: Multiple themes emerged that were unique to female partners of PCa survivors. These included expanding the sexual repertoire, feeling invisible, contextualizing sexual intimacy within the broader picture of survival, and addressing relationship concerns. Patients and their partners also shared common sexual health themes, including coming to terms with changes in sexual function and frustration with clinicians. Both patients and their partners use online health communities to get support and share their experiences with sexual recovery and use of sexual aids. Psychosocial treatments were infrequently mentioned, and may be particularly helpful to address partner concerns. CLINICAL IMPLICATIONS: A common concern for couples was not receiving sufficient information from healthcare providers regarding sexual side effects from PCa and its treatment. STRENGTHS AND LIMITATIONS: Strengths of the study include leveraging a unique data source to address an understudied topic of sexual health concerns among partners after PCa diagnosis. However, members of an online community may not be representative of all couples facing PCa. Also, this analysis is limited to female partners of patients with PCa, and further study is underway to examine the sexual health needs among gay and bisexual couples. CONCLUSION: Both patients and female partners have many unmet sexual health needs during PCa survivorship, and designing interventions to incorporate partner perspectives may improve the management of sexual side effects of PCa for couples. Li R, Wittmann D, Nelson CJ, et al. Unmet Sexual Health Needs of Patients and Female Partners Following Diagnosis and Treatment for Prostate Cancer. J Sex Med 2022;19:1797-1803.

Patient and Caregiver Insights into the Disease Burden of Myelodysplastic Syndrome.

A diagnosis of myelodysplastic syndrome (MDS) is typically unexpected and can be difficult for patients to grasp. Not only is MDS a complicated disease to understand, which can contribute to stress and anxiety, but it also has an uncertain prognosis, which can be emotionally paralyzing. Not surprisingly, emotional distress and the symptom burden of MDS, including extreme fatigue due to cytopenias, negatively impact a patient's quality of life (QOL). Studies have shown that patient-centered care-including greater physician understanding of the disease burden their patients experience, discussing and establishing agreed-on treatment goals, and including patients in the decision-making process about their care-may help improve patient QOL. To better understand patient and caregiver experiences with MDS and how the disease impacts QOL, a small survey was conducted of patients with MDS or leukemia and their caregivers on an online health network. Among the 30 respondents who completed the survey, four had MDS and one was a caregiver for a patient with MDS. Here we focus on the five MDS respondents and contextualize the findings with personal experiences from a patient and physician perspective. The patient perspective was provided by John Soper, PhD, DABCC, who was diagnosed with MDS in 2019. Dr Soper is a retired board-certified clinical chemist and a member of the MDS Foundation. The physician perspective was provided by Dr Ruben Mesa, Executive Director of the Mays Cancer Center at UT Health San Antonio MD Anderson. The survey responses and the accompanying patient and physician perspectives highlight the importance of open communication between patients and their healthcare provider to better serve those with MDS and improve their QOL.

Leveraging Social Media as a Thermometer to Gauge Patient and Caregiver Concerns: COVID-19 and Prostate Cancer.

The COVID-19 pandemic dramatically impacted society and health care on a global scale. To capture the lived experience of patients with prostate cancer and family members/caregivers during the COVID-19 pandemic, we performed a mixed-methods study of posts to two online networks. We compared all 6187 posts to the Inspire Us TOO Prostate Cancer online support and discussion community from December 2019 to April 2020, to 6926 posts from the same interval in 2019, applying a linguistic ethnography method. A similar analysis was performed using data from the Reddit discussion website (246 posts from 2019 and 260 posts from 2020). Manual qualitative analysis was performed for all 207 posts that mentioned COVID, COVID-19, or coronavirus. The computational linguistic ethnography analysis revealed a more collective tone in 2020, with increased concern about death. Our qualitative analysis showed that patients with prostate cancer and caregivers have concern about a variety of COVID-19-related impacts on care, including delays in testing and treatment. There was also substantial concern about the impact of having cancer on COVID-19 risk and access to COVID-19 care. Misinformation was present in 7% of COVID-19-related posts. In conclusion, online networks provide a useful source of real-world data from patients and their families, and analysis of these data highlighted a substantial impact of COVID-19 on prostate cancer care. PATIENT SUMMARY: We performed a study of online posts by patients with prostate cancer and their families on their perspectives about COVID-19. Concerns about the impact of COVID-19 included worry about delays in testing and treatment. Our research also revealed misinformation in COVID-19-related posts.