Abstract

Premature ovarian insufficiency (POI) and early menopause (EM), menopause before ages 40 and 45 years respectively, are associated with an increased risk of osteoporosis and is a major concern for women. The aims of this study were to (i) identify knowledge gaps and behaviours regarding bone health in women with POI/EM; and (ii) co-design an osteoporosis factsheet. This mixed methods study involved: (1) quantitative survey of women, recruited from the community and hospital with a self-reported diagnosis of POI/EM, assessing demographics, medical history, factsheet information needs, calcium intake, exercise, osteoporosis knowledge (OKAT), beliefs and self-efficacy (validated scales) and (2) using the survey results, develop and refine, using semi-structured interviews, an osteoporosis factsheet. Data analysis involved descriptive statistics, logistic regression (SPSS) and thematic analysis (NViVo) of interview transcripts by 2 independent researchers. The median age of survey respondents (n=316) was 54 (IQR 47-63) years and 76% had a post school qualification. Median age of menopause was 40 (IQR 38-43) years, iatrogenic menopause occurred in 56% and osteoporosis diagnosis was reported by 19% of women. Hormone therapy use was reported by 28% of women<51 years without breast cancer. Although 80% of women reported bone density screening, most woman reported inadequate dietary calcium intake (99%) and exercise (65%). Prevalence of other osteoporosis risk factors ranged from 8% (height loss>3cm) to 31% (current/past smoker). Median OKAT score 8[IQR6-10]/19 indicated knowledge gaps regarding risk factors and treatment options. Adjusting for age and education, OKAT predicted calcium intake (OR 1.126 (CI 1.035-1.225; p=0.006) and screening (OR 1.186 (CI 1.077-1.305; p=0.001); beliefs predicted screening [OR: 1.027 (CI: 1.004-1.050), p=0.019]; and self-efficacy predicted calcium intake [OR: 1.040 (CI: 1.013-1.069), p=0.003] and exercise [OR: 1.117 (CI: 1.077-1.160), p<0.001]. All factsheet topics (risk factors, cause, screening, prevention, treatment) were considered very important/essential to include (>75% women). Initial factsheet development incorporated survey results, expert opinion and osteoporosis guidelines. Two interview rounds were conducted (n=10 for each) with 5 themes identified: content, emotional response, design, perceived usefulness and clinical considerations. The final version of the factsheet was considered acceptable and useful in relation to addressing knowledge gaps, promoting information-seeking, impacting behaviours and facilitating healthcare discussions. A co-designed factsheet is acceptable and addresses identified osteoporosis knowledge gaps in women with POI/EM. Funding: Amgen-Osteoporosis Australia-ANZBMS clinical grant

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