The experience of pregnancy associated osteoporosis: An international survey with implications for midwifery care

Pregnancy associated osteoporosis (PAO) is a rare and complex condition. Its etiology is unclear, but possible predisposing factors include osteoporosis in a first degree relative, low body mass index, celiac or other malabsorption disorders, poor nutrition, low vitamin D and calcium intake, long-term use of medications associated with bone loss, physical inactivity, and prolonged amenorrhea. There is no standard for diagnosis or treatment. Diagnosis is typically made following reports of severe pain and imaging establishing the presence of fractures in vertebrae, pelvic structures, or the femoral neck. Research has focused on diagnosis and effective treatments. The absence of descriptive statistics and qualitative data about the presentation, recovery, and psychosocial dimensions of PAO represents a striking gap in the existing literature. The objectives for this preliminary study were to identify key features and the range of experiences of individuals with PAO to aid midwives, who are uniquely situated to identify the condition early in the postpartum course, and to inform future midwifery research on supporting recovery from this complex condition. A 39–47 question survey was developed in Qualtrics; questions were primarily quantitative. Members (N = 306) of a closed, international Osteoporosis and Pregnancy Facebook group were recruited with a post announcing the study and a link to the survey, followed by 2 reminders between June and August 2020. Data were analyzed in Qualtrics. Descriptive statistics were compiled. Qualitative data were analyzed using a grounded theory approach with both open and selective coding. Sixty-nine individuals (22% response rate) representing 12 countries responded to the survey, with most respondents from the United States, the United Kingdom, and Australia. Respondents frequently reported delays in diagnosis; only 4.4% of respondents were diagnosed within one month of the onset of fracture pain. Cessation of breastfeeding to reverse physiologic hypoestrogenemia and to stop calcium loss, dietary supplementation, orthopedic braces, and osteoanabolic medications or parathyroid hormone analogues were commonly reported treatment approaches. PAO has a prolonged impact on mobility and infant care. Six months from the onset of fracture pain, only 42% of respondents were physically able to care for their infants alone. PAO is a rare and complex condition in need of further research. Dismissal of pain and lack of knowledge about P