Department of Physical Medicine and Rehabilitation, Cerrahpasa Medical Faculty, Istanbul University-Cerrahpasa, Istanbul, Turkey.
BMC Pregnancy Childbirth. 2024 Nov 30;24(1):807. doi: 10.1186/s12884-024-07004-x.
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 PLO 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.
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 collected through structured survey questions for quantitative analysis and an open-ended question to capture qualitative insights.
The average age of participants was 33.8 ± 4.8 years, with a mean BMI of 23.2. Their group 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 the participants experienced decreased fear of the disease, and 41.9% reported reduced concerns about treatment side effects. The thematic analysis showed that participants received substantial emotional support from peers in the online support group, which alleviated feelings of isolation and provided motivation. They also gained insights into treatment options, especially medications, improving the decision-making process. Furthermore, they received practical coping strategies that fostered acceptance and positively impacted their overall well-being.
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.
妊娠和哺乳期骨质疏松症（PLO）是一种严重且罕见的疾病，会给患者带来身体和心理上的巨大痛苦。PLO 的罕见性凸显了替代信息来源的重要性，如在线患者群体。本研究旨在探讨 WhatsApp 患者群体中 PLO 患者的体验，并分析参与该群体如何影响成员对自身病情的了解、心理健康和医疗决策。
本横断面研究纳入了 46 名被诊断为 PLO 的“Smile Please”WhatsApp 患者群体成员。通过 9 项调查评估了成员的群体知晓时间、群体来源、知识提升、恐惧和担忧变化以及对治疗决策的影响。数据通过结构化问卷调查进行定量分析，并通过开放性问题获取定性见解。
参与者的平均年龄为 33.8±4.8 岁，平均 BMI 为 23.2。他们的群体成员资格持续时间为 15.3±16.8 个月。46.3%的参与者报告在症状和诊断工具方面的知识有所增加，75.6%在治疗选择方面，41.5%在副作用方面。一半的参与者表示对疾病的恐惧减少，41.9%的参与者表示对治疗副作用的担忧减少。主题分析表明，参与者从在线支持群体的同伴那里获得了大量的情感支持，减轻了孤立感并提供了动力。他们还获得了关于治疗选择的深入了解，尤其是药物治疗，改善了决策过程。此外，他们还获得了实用的应对策略，促进了接受度并对整体幸福感产生了积极影响。
在线患者群体提供了一个独特的平台，成员可以在该平台上公开分享知识和经验，从而影响他们的情绪健康和医疗决策。应该鼓励此类群体，特别是对于 PLO 等慢性和罕见疾病。
