The impact of an online support group on patients’ awareness of pregnancy-and lactation-induced osteoporosis

The impact of an online support group on patients’ awareness of pregnancy-and lactation-induced osteoporosis | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article The impact of an online support group on patients’ awareness of pregnancy-and lactation-induced osteoporosis Sansin Tuzun, Eren Aygun This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-4790987/v1 This work is licensed under a CC BY 4.0 License Status: Published Journal Publication published 30 Nov, 2024 Read the published version in BMC Pregnancy and Childbirth → Version 1 posted 4 You are reading this latest preprint version 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. pregnancy lactation osteoporosis online patient group Figures Figure 1 Introduction Osteoporosis, a condition characterized by reduced bone density and increased risk of fractures, is a significant public health concern [ 1 ]. While postmenopausal women are at greater risk, the condition can also affect individuals of any age and gender [ 2 ]. One segment of the population that may be vulnerable to osteoporosis is pregnant and lactating women, who undergo significant physiological changes that can impact bone health. Pregnancy and lactation-induced osteoporosis (PLO) is a rare condition characterized by fragility fractures, typically vertebral, occurring during late pregnancy or early postpartum period [ 3 ]. Despite its rarity, it can cause a serious fracture cascade in young women. Understanding the pathophysiology, risk factors, and optimal management strategies for PLO is crucial for preserving maternal skeletal health and preventing long-term complications [ 3 – 5 ]. On the other hand, the rarity of PLO complicates information gathering and hinders the development of a standardized approach, thereby highlighting the importance of alternative information sources. The advent of social media has revolutionized communication, allowing the formation of virtual patient groups where individuals can share experiences, seek advice, and support one another [ 6 ]. These groups are crucial in disseminating information and providing emotional support, particularly for those dealing with rare or chronic conditions [ 7 ]. Likewise, obtaining information from online surveys and social media patient groups has become a popular method among PLO patients recently [ 8 , 9 ]. 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. Methods This cross-sectional study was conducted among members of a WhatsApp patient group called "Smile Please." The study included a total of 46 participants who were diagnosed with PLO. A novel 9-item survey (Table 1) was developed to gather data on the following aspects: duration of membership, how members learned about the group, areas of increased knowledge, changes in fears and concerns, and impacts on treatment decisions. The survey, designed to be user-friendly and easy to complete within a short time frame, was hosted on Google Forms for easy distribution and collection of responces. The link to the survey was sent to participants through their patients’s WhatsApp group. Informed consent was obtained from all participants before they completed the survey. The data collected from the 9-item survey were analyzed using both quantitative and qualitative methods. The quantitative data were analyzed using descriptive statistics to summarize the responses, while the qualitative data from the open-ended question (Q9) were analyzed using thematic analysis. For the quantitative data, responses were exported from Google Forms into a spreadsheet. Each question was analyzed as follows: The membership duration of participants (Q1) was shown using the mean, standard deviation, and range. Participants' responses on how they heard about the group (Q2) were categorized and tallied. Frequencies and percentages were calculated for each category to determine the most common sources of awareness. The specific areas where participants reported increased knowledge (Q3) were identified and categorized. Frequencies and percentages were calculated for each knowledge area to highlight the most significant areas of learning. Participants' responses regarding changes in their fear of the disease since joining the group (Q4) were categorized as "increased," "decreased," or "no change." Frequencies and percentages were calculated for each category. Responses regarding changes in their concerns related to adverse effects of their medical treatment since becoming members of the group (Q5) were similarly categorized and analyzed. For the remaining three questions (Q6, Q7, and Q8), responses were categorized as "yes" or "no," and the frequencies and percentages were calculated. Results Forty-six participants completed the survey within a 10-day period. The average age was 33.8 ± 4.8 years, with a mean BMI of 23.2. Excluding founding members (4 participants); the average membership duration of the online patients’s support group was 15.3 ± 16.8 months (n = 36, min 1 month, max 72 months). The majority of patients (n = 28, 77.8%) stated that they heard about this group through the internet; social media platforms such as Facebook and Women’s Club were reported as major sources. Twenty-one patients (45.7%) are also members of Facebook patient groups. Nineteen patients (46.3%) reported increased knowledge about disease symptoms and diagnostic methods. Thirty-one patients (75.6%) gained better understanding of therapeutic options and disease progression, and 17 patients (41.5%) indicated a better understanding about treatment adverse effects. Twenty-two patients (50%) felt less fearful about the disease, while 13 patients (29.5%) reported increased fear, and 9 patients (20.5%) felt no change in fear level. Regarding changes in their concerns related to adverse effects of their medical treatment, 18 patients (41.9%) reported that their concerns decreased, while 10 patients (23.3%) said their concerns increased, and 15 patients (34.9%) said their concerns remained unchanged (Fig. 1 ). Twenty-one patients (47.8%) stated that they sought additional diagnostic methods based on the shared information in the patients’s WhatsApp group. All participants underwent dual-energy X-ray absorptiometry (DXA) scans; fifteen of them (32.6%) reported having undergone DXA measurements through the WhatsApp group. Eleven patients (24.4%) reported that this patient group has had an impact on their disease management, such as using non-pharmacological and complementary methods alongside their medical treatment. In addition to quantitative data, the survey included one open-ended question allowing members to share their thoughts freely. The thematic analysis process with the actual responses highlighted key phrases or concepts such as diagnostic awareness, information sharing, information about treatment methods and medications, doctor recommendations, gaining knowledge from others' experiences, psychological comfort, peer support, and realization and acceptance of the condition. Ultimately, four themes were refined to accurately represent the data: emotional and psychological support, information and knowledge sharing, diagnosis and treatment awareness, and acceptance and coping with the condition. Discussion Pregnancy and lactation-induced osteoporosis can cause substantial physical and emotional distress [ 3 ]. Our findings indicate that patient groups on platforms like WhatsApp provide significant benefits to their members diagnosed with PLO. These groups serve as vital sources of information, improving members' knowledge about their conditions and therapeutic options. They also offer psychological support, reducing fears and concerns for many patients. The social interaction within these groups helps members feel less isolated and more understood, which is particularly important for those with rare or chronic conditions [ 7 , 10 ]. The online patient groups provide a different platform where patients can share their knowledge and experiences without any authoritative influence. They play a crucial role in raising awareness about various diagnostic tools and therapeutic options [ 6 , 11 ]. Information shared within these groups helps members stay informed and make better decisions about their healthcare. In the present study, almost half of the participants reported an increase in their knowledge regarding diagnostic methods, and notably, approximately one-third of the patients underwent a DXA scan through shared information in the group. Information sharing was illustrated by statements like "We are gaining knowledge thanks to friends who try all kinds of treatments" and "Thanks to the group, I became aware of my back pain, had an MRI, and was diagnosed with a new vertebral fracture." A significant portion of patients (75.6%) also stated that they gained extensive knowledge about therapeutic options and the progression of their disease, with comments such as "I've learned about different treatment methods and good doctors in this field, which has been incredibly helpful" and " I received valuable information about treatment methods and the progression of the disease." The participants of the WhatsApp group called “Smile Please” provided rich insights into the personal experiences of being a part of the patient group. Their general thought concerning the group was that it has been a significant source of emotional and psychological comfort. Many members emphasized the psychological relief and sense of community they gained, with comments such as "Knowing that I am not alone with a rare condition and being able to talk about it whenever I want to provide psychological comfort," and "The group has given me a sense of belonging and support that I couldn't find elsewhere." This mutual support and assistance, particularly to newly diagnosed individuals, create a supportive environment where members feel reassured knowing they are not alone in their condition. The emotional support provided by this online patient group for patients with PLO is similar to what is described in the literature for other patient groups with different diseases [ 12 , 13 ] The participants were premenopausal women of relatively young age (33.8 ± 4.8 years). In contrast to postmenopausal osteoporosis, the management of PLO is challenging due to limited options and lack of clinical guidelines [ 14 ]. This lack of evidence-based treatment approaches likely contributes to the fear and anxiety experienced by these women, as they face uncertainty about managing their condition effectively. One study also highlighted that patients with PLO had a reduced quality of life and increased fear of fractures and falls compared to a control group [ 9 ]. Our study showed that a significant number of patients experienced a remarkable decrease in their fear of the disease and concerns about adverse treatment effects after joining this group. Many members mentioned the hope and motivation they received, noting that "Hearing that others have improved over time gave me hope and encouragement and reduced my worries." However, some members also reported challenges, such as "Sometimes I panicked when others shared their experiences" and "Reading about others' struggles without finding a solution made me decide to just go with the flow of my disease." These responses also highlighted the dual nature of patient groups, providing both support and, at times, anxiety, underscoring the importance of careful moderation and support within these communities. In conclusion , online patient groups can play a vital role in rapidly disseminating information in women with Pregnancy and lactation-induced osteoporosis (PLO), serving a unique platform for members to share knowledge and experiences. These groups positively impact emotional well-being and healthcare decisions, making them valuable resources, particularly for patients facing rare and chronic disease like PLO. Declarations Ethics approval and consent to participate The study adhered to the principles outlined in the Declaration of Helsinki. The questionnaire included a statement indicating that completing it would be considered consent to participate, allowing for an exemption from requiring a signed consent form. Consent for publication Not applicable. Competing interests The authors declare no competing interests Funding Not applicable. Author Contribution S.T. and E.A. wrote the main manuscript text, prepared the tables and figures, and reviewed the manuscript together. Acknowledgement We thank the members of the “Smile Please” WhatsApp patient group for providing their data, which made this study possible. Data Availability The datasets used and/or analyzed during the current study available from the corresponding author on reasonable request. References Cauley JA. Public health impact of osteoporosis. J Gerontol Biol Sci Med Sci. 2013;68(10):1243–51. 10.1093/gerona/glt093 . Gourlay ML, Brown SA. Clinical considerations in premenopausal osteoporosis. Arch Intern Med. 2004;164(6):603–14. 10.1001/archinte.164.6.603 . Scioscia MF, Zanchetta MB. Recent Insights into Pregnancy and Lactation-Associated Osteoporosis (PLO). Int J Womens Health. 2023;15:1227–38. 10.2147/IJWH.S366254 . Qian Y, Wang L, Yu L, Huang W. Pregnancy- and lactation-associated osteoporosis with vertebral fractures: a systematic review. BMC Musculoskelet Disord. 2021;22(1):926. 10.1186/s12891-021-04776-7 . Kovacs CS. Osteoporosis presenting in pregnancy, puerperium, and lactation. Curr Opin Endocrinol Diabetes Obes. 2014;21(6):468–75. 10.1097/MED.0000000000000102 . Conrad P, Bandini J, Vasquez A. Illness and the Internet: From Private to Public Experience. Health (London). 2016;20(1):22–32. 10.1177/1363459315611941 . Delisle VC, Gumuchian ST, Rice DB, et al. Perceived Benefits and Factors that Influence the Ability to Establish and Maintain Patient Support Groups in Rare Diseases: A Scoping Review. Patient. 2017;10(3):283–93. 10.1007/s40271-016-0213-9 . Kondapalli AV, Kamanda-Kosseh M, Williams JM, et al. Clinical characteristics of pregnancy and lactation associated osteoporosis: An online survey study. Osteoporos Int. 2023;34(8):1477–89. 10.1007/s00198-023-06793-9 . Peltz-Sinvani N, Raz HM, Klein P, et al. Pregnancy- and lactation-induced osteoporosis: a social-media-based survey. BMC Pregnancy Childbirth. 2023;23(1):311. 10.1186/s12884-023-05639-w . Rollman BL, Herbeck Belnap B, Rotondi AJ. Internet support groups for health: ready for the Affordable Care Act. J Gen Intern Med. 2014;29(11):1436–8. 10.1007/s11606-014-2884-z . Chretien KC, Kind T. Social media and clinical care: ethical, professional, and social implications. Circulation. 2013;127(13):1413–21. 10.1161/CIRCULATIONAHA.112.128017 . Muhammad S, Allan M, Ali F, Bonacina M, Adams M. The renal patient support group: supporting patients with chronic kidney disease through social media. J Ren Care. 2014;40(3):216–8. 10.1111/jorc.12076 . Medina EL, Loques Filho O, Mesquita CT. Health social networks as online life support groups for patients with cardiovascular diseases. Arq Bras Cardiol. 2013;101(2):e39–45. 10.5935/abc.20130161 . Herath M, Cohen A, Ebeling PR, Milat F. Dilemmas in the Management of Osteoporosis in Younger Adults. JBMR Plus. 2022;6(1):e10594. 10.1002/jbm4.10594 . Table 1 Table 1. The 9-item survey Q1. How many months have you been a member of this WhatsApp patient group? Q2. How did you hear about the group? Q3. In which specific areas has being a member of this group increased your knowledge? Symptoms of the disease Diagnostic methods Therapeutic options Adverse effects of treatments Disease progression during the follow-up Q4. Has your fear of the disease changed since becoming a member of the group? My fear has increased My fear has not changed My fear has decreased Q5. Have your concerns related adverse effects of your medical treatment changed since becoming a member of the group? My concerns have increased My concerns havent’t changed My concerns have decreased Q6. Have you sought out any extra diagnostic tools (QCT, DXA, or MRI) after joining the group? Yes, QCT Yes, DXA Yes, MRI No Q7. Has your self-management of the disease changed since becoming a member of the group? Yes No Q8. Are you also a member of other social media patient platforms (e.g., Facebook)? Yes No Q9. What are your thoughts on this WhatsApp group? Additional Declarations No competing interests reported. Cite Share Download PDF Status: Published Journal Publication published 30 Nov, 2024 Read the published version in BMC Pregnancy and Childbirth → Version 1 posted Editorial decision: Revision requested 26 Jul, 2024 Editor assigned by journal 25 Jul, 2024 Submission checks completed at journal 25 Jul, 2024 First submitted to journal 23 Jul, 2024 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-4790987","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":332047684,"identity":"b8e1ac91-3920-4682-bd8d-d81486f74fe8","order_by":0,"name":"Sansin Tuzun","email":"","orcid":"","institution":"Istanbul University Cerrahpaşa","correspondingAuthor":false,"prefix":"","firstName":"Sansin","middleName":"","lastName":"Tuzun","suffix":""},{"id":332047685,"identity":"d1e8634d-3093-4a9f-a499-5be4df7ab12f","order_by":1,"name":"Eren Aygun","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAA5ElEQVRIie3RsQrCMBCA4StCXWK7pgj6ChHBRbGvklLQRXeHohXBqXQXfIg8QiVQl7gHdFAEJwddHEUrusaMgvnhyHIfHATAZPrtSln2ejN9YtMPsWJNgghoEbfK8z1EvMu2yZWjCGqOpOXjSEG8tNcnkPOQ7TaMoxyanqTWVCgIEaiFweYhkUPGKzEErCCqy3zh3jDcCzLYF2TylRCEbGzNefdJoCCUfCNY2C0cpH3qyR5ZLXPcWIjDdKEiblI64cut7TsyPF7OUafurMPsqiKvKMyC9xJ+jt5Pjn2dLZPJZPrTHpzQUofG25pLAAAAAElFTkSuQmCC","orcid":"","institution":"Istanbul University Cerrahpaşa","correspondingAuthor":true,"prefix":"","firstName":"Eren","middleName":"","lastName":"Aygun","suffix":""}],"badges":[],"createdAt":"2024-07-23 19:53:21","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-4790987/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-4790987/v1","draftVersion":[],"editorialEvents":[{"content":"https://doi.org/10.1186/s12884-024-07004-x","type":"published","date":"2024-11-30T15:57:08+00:00"}],"editorialNote":"","failedWorkflow":false,"files":[{"id":63369408,"identity":"e4eaea11-677b-4813-8f52-37de0613b8f0","added_by":"auto","created_at":"2024-08-27 11:43:45","extension":"jpeg","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":233026,"visible":true,"origin":"","legend":"\u003cp\u003eParticipants' proportions in terms of changes in their fear of the disease (A) and their concerns related to adverse effects of their medical treatment (B) since joining the group\u003c/p\u003e","description":"","filename":"floatimage1.jpeg","url":"https://assets-eu.researchsquare.com/files/rs-4790987/v1/6e50d9deecc46fff55e4693f.jpeg"},{"id":70390976,"identity":"26bf8670-5793-414b-80fb-8ecb9f700ea6","added_by":"auto","created_at":"2024-12-02 17:30:15","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":520534,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-4790987/v1/873fa643-630a-4e59-985f-940f64a67956.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"The impact of an online support group on patients’ awareness of pregnancy-and lactation-induced osteoporosis","fulltext":[{"header":"Introduction","content":"\u003cp\u003eOsteoporosis, a condition characterized by reduced bone density and increased risk of fractures, is a significant public health concern [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e]. While postmenopausal women are at greater risk, the condition can also affect individuals of any age and gender [\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e]. One segment of the population that may be vulnerable to osteoporosis is pregnant and lactating women, who undergo significant physiological changes that can impact bone health.\u003c/p\u003e \u003cp\u003ePregnancy and lactation-induced osteoporosis (PLO) is a rare condition characterized by fragility fractures, typically vertebral, occurring during late pregnancy or early postpartum period [\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e]. Despite its rarity, it can cause a serious fracture cascade in young women. Understanding the pathophysiology, risk factors, and optimal management strategies for PLO is crucial for preserving maternal skeletal health and preventing long-term complications [\u003cspan additionalcitationids=\"CR4\" citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e]. On the other hand, the rarity of PLO complicates information gathering and hinders the development of a standardized approach, thereby highlighting the importance of alternative information sources. The advent of social media has revolutionized communication, allowing the formation of virtual patient groups where individuals can share experiences, seek advice, and support one another [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e]. These groups are crucial in disseminating information and providing emotional support, particularly for those dealing with rare or chronic conditions [\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e]. Likewise, obtaining information from online surveys and social media patient groups has become a popular method among PLO patients recently [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e, \u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eThis 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.\u003c/p\u003e"},{"header":"Methods","content":"\u003cp\u003eThis cross-sectional study was conducted among members of a WhatsApp patient group called \"Smile Please.\" The study included a total of 46 participants who were diagnosed with PLO. A novel 9-item survey (Table 1) was developed to gather data on the following aspects: duration of membership, how members learned about the group, areas of increased knowledge, changes in fears and concerns, and impacts on treatment decisions. The survey, designed to be user-friendly and easy to complete within a short time frame, was hosted on Google Forms for easy distribution and collection of responces. The link to the survey was sent to participants through their patients’s WhatsApp group. Informed consent was obtained from all participants before they completed the survey.\u003c/p\u003e\n\u003cp\u003eThe data collected from the 9-item survey were analyzed using both quantitative and qualitative methods. The quantitative data were analyzed using descriptive statistics to summarize the responses, while the qualitative data from the open-ended question (Q9) were analyzed using thematic analysis. For the quantitative data, responses were exported from Google Forms into a spreadsheet. Each question was analyzed as follows: The membership duration of participants (Q1) was shown using the mean, standard deviation, and range. Participants' responses on how they heard about the group (Q2) were categorized and tallied. Frequencies and percentages were calculated for each category to determine the most common sources of awareness. The specific areas where participants reported increased knowledge (Q3) were identified and categorized. Frequencies and percentages were calculated for each knowledge area to highlight the most significant areas of learning. Participants' responses regarding changes in their fear of the disease since joining the group (Q4) were categorized as \"increased,\" \"decreased,\" or \"no change.\" Frequencies and percentages were calculated for each category. Responses regarding changes in their concerns related to adverse effects of their medical treatment since becoming members of the group (Q5) were similarly categorized and analyzed. For the remaining three questions (Q6, Q7, and Q8), responses were categorized as \"yes\" or \"no,\" and the frequencies and percentages were calculated.\u003c/p\u003e"},{"header":"Results","content":"\u003cp\u003eForty-six participants completed the survey within a 10-day period. The average age was 33.8\u0026thinsp;\u0026plusmn;\u0026thinsp;4.8 years, with a mean BMI of 23.2. Excluding founding members (4 participants); the average membership duration of the online patients\u0026rsquo;s support group was 15.3\u0026thinsp;\u0026plusmn;\u0026thinsp;16.8 months (n\u0026thinsp;=\u0026thinsp;36, min 1 month, max 72 months). The majority of patients (n\u0026thinsp;=\u0026thinsp;28, 77.8%) stated that they heard about this group through the internet; social media platforms such as Facebook and Women\u0026rsquo;s Club were reported as major sources. Twenty-one patients (45.7%) are also members of Facebook patient groups.\u003c/p\u003e \u003cp\u003eNineteen patients (46.3%) reported increased knowledge about disease symptoms and diagnostic methods. Thirty-one patients (75.6%) gained better understanding of therapeutic options and disease progression, and 17 patients (41.5%) indicated a better understanding about treatment adverse effects.\u003c/p\u003e \u003cp\u003eTwenty-two patients (50%) felt less fearful about the disease, while 13 patients (29.5%) reported increased fear, and 9 patients (20.5%) felt no change in fear level. Regarding changes in their concerns related to adverse effects of their medical treatment, 18 patients (41.9%) reported that their concerns decreased, while 10 patients (23.3%) said their concerns increased, and 15 patients (34.9%) said their concerns remained unchanged (Fig.\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e).\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003cp\u003eTwenty-one patients (47.8%) stated that they sought additional diagnostic methods based on the shared information in the patients\u0026rsquo;s WhatsApp group. All participants underwent dual-energy X-ray absorptiometry (DXA) scans; fifteen of them (32.6%) reported having undergone DXA measurements through the WhatsApp group. Eleven patients (24.4%) reported that this patient group has had an impact on their disease management, such as using non-pharmacological and complementary methods alongside their medical treatment.\u003c/p\u003e \u003cp\u003eIn addition to quantitative data, the survey included one open-ended question allowing members to share their thoughts freely. The thematic analysis process with the actual responses highlighted key phrases or concepts such as diagnostic awareness, information sharing, information about treatment methods and medications, doctor recommendations, gaining knowledge from others' experiences, psychological comfort, peer support, and realization and acceptance of the condition. Ultimately, four themes were refined to accurately represent the data: emotional and psychological support, information and knowledge sharing, diagnosis and treatment awareness, and acceptance and coping with the condition.\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003ePregnancy and lactation-induced osteoporosis can cause substantial physical and emotional distress [\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e]. Our findings indicate that patient groups on platforms like WhatsApp provide significant benefits to their members diagnosed with PLO. These groups serve as vital sources of information, improving members' knowledge about their conditions and therapeutic options. They also offer psychological support, reducing fears and concerns for many patients. The social interaction within these groups helps members feel less isolated and more understood, which is particularly important for those with rare or chronic conditions [\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e, \u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eThe online patient groups provide a different platform where patients can share their knowledge and experiences without any authoritative influence. They play a crucial role in raising awareness about various diagnostic tools and therapeutic options [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e, \u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e]. Information shared within these groups helps members stay informed and make better decisions about their healthcare. In the present study, almost half of the participants reported an increase in their knowledge regarding diagnostic methods, and notably, approximately one-third of the patients underwent a DXA scan through shared information in the group. Information sharing was illustrated by statements like \"We are gaining knowledge thanks to friends who try all kinds of treatments\" and \"Thanks to the group, I became aware of my back pain, had an MRI, and was diagnosed with a new vertebral fracture.\" A significant portion of patients (75.6%) also stated that they gained extensive knowledge about therapeutic options and the progression of their disease, with comments such as \"I've learned about different treatment methods and good doctors in this field, which has been incredibly helpful\" and \" I received valuable information about treatment methods and the progression of the disease.\"\u003c/p\u003e \u003cp\u003e The participants of the WhatsApp group called \u0026ldquo;Smile Please\u0026rdquo; provided rich insights into the personal experiences of being a part of the patient group. Their general thought concerning the group was that it has been a significant source of emotional and psychological comfort. Many members emphasized the psychological relief and sense of community they gained, with comments such as \"Knowing that I am not alone with a rare condition and being able to talk about it whenever I want to provide psychological comfort,\" and \"The group has given me a sense of belonging and support that I couldn't find elsewhere.\" This mutual support and assistance, particularly to newly diagnosed individuals, create a supportive environment where members feel reassured knowing they are not alone in their condition. The emotional support provided by this online patient group for patients with PLO is similar to what is described in the literature for other patient groups with different diseases [\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e, \u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e]\u003c/p\u003e \u003cp\u003eThe participants were premenopausal women of relatively young age (33.8\u0026thinsp;\u0026plusmn;\u0026thinsp;4.8 years). In contrast to postmenopausal osteoporosis, the management of PLO is challenging due to limited options and lack of clinical guidelines [\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e]. This lack of evidence-based treatment approaches likely contributes to the fear and anxiety experienced by these women, as they face uncertainty about managing their condition effectively. One study also highlighted that patients with PLO had a reduced quality of life and increased fear of fractures and falls compared to a control group [\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e]. Our study showed that a significant number of patients experienced a remarkable decrease in their fear of the disease and concerns about adverse treatment effects after joining this group. Many members mentioned the hope and motivation they received, noting that \"Hearing that others have improved over time gave me hope and encouragement and reduced my worries.\" However, some members also reported challenges, such as \"Sometimes I panicked when others shared their experiences\" and \"Reading about others' struggles without finding a solution made me decide to just go with the flow of my disease.\" These responses also highlighted the dual nature of patient groups, providing both support and, at times, anxiety, underscoring the importance of careful moderation and support within these communities.\u003c/p\u003e \u003cp\u003e \u003cb\u003eIn conclusion\u003c/b\u003e, online patient groups can play a vital role in rapidly disseminating information in women with Pregnancy and lactation-induced osteoporosis (PLO), serving a unique platform for members to share knowledge and experiences. These groups positively impact emotional well-being and healthcare decisions, making them valuable resources, particularly for patients facing rare and chronic disease like PLO.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e \u003cstrong\u003eEthics approval and consent to participate\u003c/strong\u003e \u003cp\u003e The study adhered to the principles outlined in the Declaration of Helsinki. The questionnaire included a statement indicating that completing it would be considered consent to participate, allowing for an exemption from requiring a signed consent form.\u003c/p\u003e \u003c/p\u003e \u003cp\u003e \u003cstrong\u003eConsent for publication\u003c/strong\u003e \u003cp\u003eNot applicable.\u003c/p\u003e \u003c/p\u003e \u003cp\u003e \u003cstrong\u003eCompeting interests\u003c/strong\u003e \u003cp\u003eThe authors declare no competing interests\u003c/p\u003e \u003c/p\u003e\u003ch2\u003eFunding\u003c/h2\u003e \u003cp\u003eNot applicable.\u003c/p\u003e\u003ch2\u003eAuthor Contribution\u003c/h2\u003e\u003cp\u003eS.T. and E.A. wrote the main manuscript text, prepared the tables and figures, and reviewed the manuscript together.\u003c/p\u003e\u003ch2\u003eAcknowledgement\u003c/h2\u003e\u003cp\u003eWe thank the members of the \u0026ldquo;Smile Please\u0026rdquo; WhatsApp patient group for providing their data, which made this study possible.\u003c/p\u003e\u003ch2\u003eData Availability\u003c/h2\u003e\u003cp\u003eThe datasets used and/or analyzed during the current study available from the corresponding author on reasonable request.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eCauley JA. Public health impact of osteoporosis. J Gerontol Biol Sci Med Sci. 2013;68(10):1243\u0026ndash;51. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1093/gerona/glt093\u003c/span\u003e\u003cspan address=\"10.1093/gerona/glt093\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eGourlay ML, Brown SA. Clinical considerations in premenopausal osteoporosis. Arch Intern Med. 2004;164(6):603\u0026ndash;14. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1001/archinte.164.6.603\u003c/span\u003e\u003cspan address=\"10.1001/archinte.164.6.603\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eScioscia MF, Zanchetta MB. Recent Insights into Pregnancy and Lactation-Associated Osteoporosis (PLO). Int J Womens Health. 2023;15:1227\u0026ndash;38. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.2147/IJWH.S366254\u003c/span\u003e\u003cspan address=\"10.2147/IJWH.S366254\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eQian Y, Wang L, Yu L, Huang W. Pregnancy- and lactation-associated osteoporosis with vertebral fractures: a systematic review. BMC Musculoskelet Disord. 2021;22(1):926. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1186/s12891-021-04776-7\u003c/span\u003e\u003cspan address=\"10.1186/s12891-021-04776-7\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eKovacs CS. Osteoporosis presenting in pregnancy, puerperium, and lactation. Curr Opin Endocrinol Diabetes Obes. 2014;21(6):468\u0026ndash;75. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1097/MED.0000000000000102\u003c/span\u003e\u003cspan address=\"10.1097/MED.0000000000000102\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eConrad P, Bandini J, Vasquez A. Illness and the Internet: From Private to Public Experience. Health (London). 2016;20(1):22\u0026ndash;32. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1177/1363459315611941\u003c/span\u003e\u003cspan address=\"10.1177/1363459315611941\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eDelisle VC, Gumuchian ST, Rice DB, et al. Perceived Benefits and Factors that Influence the Ability to Establish and Maintain Patient Support Groups in Rare Diseases: A Scoping Review. Patient. 2017;10(3):283\u0026ndash;93. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1007/s40271-016-0213-9\u003c/span\u003e\u003cspan address=\"10.1007/s40271-016-0213-9\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eKondapalli AV, Kamanda-Kosseh M, Williams JM, et al. Clinical characteristics of pregnancy and lactation associated osteoporosis: An online survey study. Osteoporos Int. 2023;34(8):1477\u0026ndash;89. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1007/s00198-023-06793-9\u003c/span\u003e\u003cspan address=\"10.1007/s00198-023-06793-9\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003ePeltz-Sinvani N, Raz HM, Klein P, et al. Pregnancy- and lactation-induced osteoporosis: a social-media-based survey. BMC Pregnancy Childbirth. 2023;23(1):311. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1186/s12884-023-05639-w\u003c/span\u003e\u003cspan address=\"10.1186/s12884-023-05639-w\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eRollman BL, Herbeck Belnap B, Rotondi AJ. Internet support groups for health: ready for the Affordable Care Act. J Gen Intern Med. 2014;29(11):1436\u0026ndash;8. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1007/s11606-014-2884-z\u003c/span\u003e\u003cspan address=\"10.1007/s11606-014-2884-z\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eChretien KC, Kind T. Social media and clinical care: ethical, professional, and social implications. Circulation. 2013;127(13):1413\u0026ndash;21. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1161/CIRCULATIONAHA.112.128017\u003c/span\u003e\u003cspan address=\"10.1161/CIRCULATIONAHA.112.128017\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eMuhammad S, Allan M, Ali F, Bonacina M, Adams M. The renal patient support group: supporting patients with chronic kidney disease through social media. J Ren Care. 2014;40(3):216\u0026ndash;8. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1111/jorc.12076\u003c/span\u003e\u003cspan address=\"10.1111/jorc.12076\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eMedina EL, Loques Filho O, Mesquita CT. Health social networks as online life support groups for patients with cardiovascular diseases. Arq Bras Cardiol. 2013;101(2):e39\u0026ndash;45. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.5935/abc.20130161\u003c/span\u003e\u003cspan address=\"10.5935/abc.20130161\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eHerath M, Cohen A, Ebeling PR, Milat F. Dilemmas in the Management of Osteoporosis in Younger Adults. JBMR Plus. 2022;6(1):e10594. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1002/jbm4.10594\u003c/span\u003e\u003cspan address=\"10.1002/jbm4.10594\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"},{"header":"Table 1","content":"\u003cp\u003e\u003cstrong\u003eTable 1. The 9-item survey\u003c/strong\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd width=\"51.570247933884296%\" valign=\"top\"\u003e\n \u003cp\u003eQ1. How many months have you been a member of this WhatsApp patient group?\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"48.429752066115704%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"51.570247933884296%\" valign=\"top\"\u003e\n \u003cp\u003eQ2. How did you hear about the group?\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"48.429752066115704%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"51.570247933884296%\" valign=\"top\"\u003e\n \u003cp\u003eQ3. In which specific areas has being a member of this group increased your knowledge?\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"48.429752066115704%\" valign=\"top\"\u003e\n \u003cul\u003e\n \u003cli\u003eSymptoms of the disease\u003c/li\u003e\n \u003cli\u003eDiagnostic methods\u003c/li\u003e\n \u003cli\u003eTherapeutic options\u003c/li\u003e\n \u003cli\u003eAdverse effects of treatments\u003c/li\u003e\n \u003cli\u003eDisease progression during the follow-up\u0026nbsp;\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"51.570247933884296%\" valign=\"top\"\u003e\n \u003cp\u003eQ4. Has your fear of the disease changed since becoming a member of the group?\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"48.429752066115704%\" valign=\"top\"\u003e\n \u003cul\u003e\n \u003cli\u003eMy fear has increased\u003c/li\u003e\n \u003cli\u003eMy fear has not changed\u003c/li\u003e\n \u003cli\u003eMy fear has decreased\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"51.570247933884296%\" valign=\"top\"\u003e\n \u003cp\u003eQ5. Have your concerns related adverse effects of your medical treatment changed since becoming a member of the group?\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"48.429752066115704%\" valign=\"top\"\u003e\n \u003cul\u003e\n \u003cli\u003eMy concerns have increased\u003c/li\u003e\n \u003cli\u003eMy concerns havent\u0026rsquo;t changed\u003c/li\u003e\n \u003cli\u003eMy concerns have decreased\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"51.570247933884296%\" valign=\"top\"\u003e\n \u003cp\u003eQ6. Have you sought out any extra diagnostic tools (QCT, DXA, or MRI) after joining the group?\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"48.429752066115704%\" valign=\"top\"\u003e\n \u003cul\u003e\n \u003cli\u003eYes, QCT \u0026nbsp;\u003c/li\u003e\n \u003cli\u003eYes, DXA\u0026nbsp;\u003c/li\u003e\n \u003cli\u003eYes, MRI \u0026nbsp;\u003c/li\u003e\n \u003cli\u003eNo\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"51.570247933884296%\" valign=\"top\"\u003e\n \u003cp\u003eQ7. Has your self-management of the disease changed since becoming a member of the group?\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"48.429752066115704%\" valign=\"top\"\u003e\n \u003cul\u003e\n \u003cli\u003eYes\u0026nbsp;\u003c/li\u003e\n \u003cli\u003eNo\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"51.570247933884296%\" valign=\"top\"\u003e\n \u003cp\u003eQ8. Are you also a member of other social media patient platforms (e.g., Facebook)?\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"48.429752066115704%\" valign=\"top\"\u003e\n \u003cul\u003e\n \u003cli\u003eYes\u0026nbsp;\u003c/li\u003e\n \u003cli\u003eNo\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"51.570247933884296%\" valign=\"top\"\u003e\n \u003cp\u003eQ9. What are your thoughts on this WhatsApp group?\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"48.429752066115704%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"bmc-pregnancy-and-childbirth","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"prch","sideBox":"Learn more about [BMC Pregnancy and Childbirth](http://bmcpregnancychildbirth.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/prch/default.aspx","title":"BMC Pregnancy and Childbirth","twitterHandle":"@BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"pregnancy, lactation, osteoporosis, online patient group","lastPublishedDoi":"10.21203/rs.3.rs-4790987/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-4790987/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eBackground:\u003c/strong\u003e 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.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethods:\u003c/strong\u003e 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.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults:\u003c/strong\u003e The average age of participants was 33.8±4.8 years, with a mean BMI of 23.2. \u0026nbsp;Their\u003c/p\u003e\n\u003cp\u003emembership 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.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusions:\u003c/strong\u003e 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.\u003c/p\u003e","manuscriptTitle":"The impact of an online support group on patients’ awareness of pregnancy-and lactation-induced osteoporosis","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2024-08-27 11:43:38","doi":"10.21203/rs.3.rs-4790987/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2024-07-26T07:38:28+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2024-07-25T09:25:55+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2024-07-25T09:25:18+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Pregnancy and Childbirth","date":"2024-07-23T19:45:29+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-pregnancy-and-childbirth","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"prch","sideBox":"Learn more about [BMC Pregnancy and Childbirth](http://bmcpregnancychildbirth.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/prch/default.aspx","title":"BMC Pregnancy and Childbirth","twitterHandle":"@BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"210b3d07-01b8-4d86-876e-a83272e91ab6","owner":[],"postedDate":"August 27th, 2024","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"published-in-journal","subjectAreas":[],"tags":[],"updatedAt":"2024-12-02T17:27:54+00:00","versionOfRecord":{"articleIdentity":"rs-4790987","link":"https://doi.org/10.1186/s12884-024-07004-x","journal":{"identity":"bmc-pregnancy-and-childbirth","isVorOnly":false,"title":"BMC Pregnancy and Childbirth"},"publishedOn":"2024-11-30 15:57:08","publishedOnDateReadable":"November 30th, 2024"},"versionCreatedAt":"2024-08-27 11:43:38","video":"","vorDoi":"10.1186/s12884-024-07004-x","vorDoiUrl":"https://doi.org/10.1186/s12884-024-07004-x","workflowStages":[]},"version":"v1","identity":"rs-4790987","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-4790987","identity":"rs-4790987","version":["v1"]},"buildId":"qtupq5eGEP_6zYnWcrvyt","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}