Online patient groups helpful for women with pregnancy and lactation-induced osteoporosis

Key takeaways:

• Women with pregnancy and lactation-induced osteoporosis shared knowledge and experiences via an online patient support.
• Members reported less fear and concerns and received substantial peer support.

Women with pregnancy and lactation-induced osteoporosis reported fewer disease-related fears or concerns after joining an online peer support group and sharing their health care experiences, researchers reported.

“Health care providers should recognize the potential of online support groups as supplementary resources for patient education. These groups can improve patients’ understanding of symptoms, diagnostic tools and treatment options,” Sansin Tüzün, MD, professor in physical medicine at the Istanbul University-Cerrahpaa Medical Faculty and president of the Turkish Osteoporosis Society, and Eren Aygün, MD, resident at Istanbul University-Cerrahpaa, told Healio. “Clinicians might consider recommending such groups as part of a holistic care plan, especially for conditions with limited peer-to-peer support options. Additionally, health care providers could collaborate with online patient groups to share credible resources, debunk misinformation and stay informed about patient concerns, fostering a more engaged and patient-centered approach to care.”

Tüzün and Aygün conducted a cross-sectional study, published in BMC Pregnancy and Childbirth, with 46 women (mean age, 33.8 years) with pregnancy and lactation-induced osteoporosis from the “Smile Please” WhatsApp patient group in 2024. Researchers used a nine-item survey to assess group membership duration, sources of group awareness, knowledge improvement, changes in fears and concerns, and impacts on treatment decisions.

Mean group membership duration was 15.3 months. Most members (77.8%) reported hearing about their online patient group through the internet, specifically Facebook and Women’s Club.

Overall, 46.3% of members reported increased knowledge regarding symptoms and diagnostic tools, 75.6% reported increased knowledge on treatment options and 41.5% reported increased knowledge on adverse events.

Half of respondents reported experiencing decreased fear of disease and 41.9% reported reduced treatment adverse event concerns; however, 29.5% of members reported increased fear, 20.5% reported no changes in fear levels, 23.3% reported increased concerns and 34.9% reported unchanged concerns.

“Simply being a member of an online support group can effectively alleviate disease-related fears and concerns,” Tüzün and Aygün told Healio. “For instance, half of the participants reported reduced fear of the disease, and more than 40% felt less concerned about treatment side effects. This highlights the profound psychological impact of peer support, even in a virtual setting, where shared experiences and emotional support help ease the burden of living with a rare condition like pregnancy and lactation-induced osteoporosis.”

In the thematic analysis, members reported substantial emotional support received from peers in the online support group. This support alleviated feelings of isolation and provided motivation to members, according to the researchers. Members also received more insights into treatment options, specifically for medications, which improved members’ decision-making and practical coping strategies that encouraged acceptance and positively impacted overall member well-being.

“Building on this, we are excited to announce our forthcoming article, which will delve deeper into clinical risk factors, treatment options and potential side effects,” Tüzün and Aygün told Healio. “We are also incorporating valuable insights from an online support group, enriching our understanding of patient experiences.”

For more information:

Eren Aygün, MD, can be reached at eren.aygun@iuc.edu.tr.

Sansin Tüzün, MD, can be reached at sansintuzun@gmail.com.