Abstract
Background: Pregnancy and lactation-induced osteoporosis (PLO) is a serious and rare condition, which causes substantial physical and emotional distress. The rarity of PLO highlights the importance of alternative information sources such as online patient groups. This study aims to explore the experiences of pregnancy and lactation-induced osteoporosis among members of a WhatsApp patient group, and to analyze how participation in the group impacts members' knowledge about their condition, psychological well-being, and healthcare decisions.
Methods: This cross-sectional study included forty-six members of the "Smile Please" WhatsApp patient group, diagnosed with PLO. A 9-item survey assessed membership duration, sources of group awareness, knowledge improvement, changes in fears and concerns, and impacts on treatment decisions. Data were analyzed using descriptive statistics and thematic analysis for qualitative responses.
Results: The average age of participants was 33.8±4.8 years, with a mean BMI of 23.2. Their
membership duration was 15.3 ± 16.8 months. Increased knowledge was reported by 46.3% regarding symptoms and diagnostic tools, 75.6% on treatment options, and 41.5% on side effects. Half of the participants experienced decreased fear of the disease, and 41.9% reported reduced concerns about treatment side effects. Qualitative analysis highlighted themes of emotional support, information sharing, and coping with the condition.
Conclusions: Online patient groups provide a unique platform where members can openly share their knowledge and experiences, thereby influencing their emotional well-being and healthcare decisions. These groups should be encouraged, especially for chronic and rare diseases like PLO.