Adults with Cystic Fibrosis and (In)fertility: How Has the Health Care System Responded?

HULL, SARA CHANDROS; KASS, NANCY E.

doi:10.1002/j.1939-4640.2000.tb03410.x

Cited by 6 publications

(1 citation statement)

References 9 publications

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“…Lower uptake of contraception use was reported in our study compared to the general Australian population (Richters et al, 2003 ) and compared to Australian women with other chronic diseases (Hibbert et al, 2018 ). Several studies have shown that women with chronic diseases commonly underestimate their fertility potential or are unsure of which contraceptives are safe to use, contributing to a lower uptake of contraception use (Hibbert et al, 2018 ; Johannesson et al, 1998 ; Hull et al, 2000 ). While less than 10% of women in this study reported a presumption of reduced fertility, close to half of participants were unsure of the safety of the wide range of contraception available in Australia in TDT.…”

Section: Discussionmentioning

confidence: 99%

Experiences, Knowledge Gaps and Information Needs of Women in Australia with Transfusion Dependent Thalassaemia in Regard to Fertility and Pregnancy

Matthiesson,

Berdoukas,

Briganti

2023

Matern Child Health J

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Objectives Transfusion dependent β-thalassaemia can have significant effects on fertility and is also associated with significant risks in pregnancy. However, little is known about the perspectives of women living with the condition with regards to reproductive issues. The aim of this study was to assess the experience, knowledge and information needs of Australian women living with transfusion dependent β-thalassaemia in relation to fertility and pregnancy. Methods A cross sectional study using an online anonymous survey, self-administered through REDCap, addressing key issues related to the experience, knowledge and information needs of women with transfusion dependent β-thalassaemia. Descriptive and inferential analysis was conducted using STATA. Results Sixty participants were included in the analysis. Two-thirds of sexually active, pre-menopausal women were using contraception. Just under half of the participants who were sexually active had children and half had required some form of assisted reproductive technology to achieve a pregnancy. Less than half identified the importance of contraception as part of ensuring optimised pre-pregnancy care, and less than half had accessed pre-pregnancy care. Although there was good understanding of the increased risk of infertility and pregnancy complications, the specific risks and causes of these risks were poorly understood. Around half of the participants indicated they wanted more information on these medical issues. Conclusions for practice Our study demonstrated significant concerns and knowledge gaps in Australian women with transfusion dependent β-thalassaemia with regards to disease-specific issues related to fertility and pregnancy, and a desire for related patient information.

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Section: Discussionmentioning

confidence: 99%

Experiences, Knowledge Gaps and Information Needs of Women in Australia with Transfusion Dependent Thalassaemia in Regard to Fertility and Pregnancy

Matthiesson,

Berdoukas,

Briganti

2023

Matern Child Health J

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Reproductive Knowledge and Preferences of Adolescents and Adults with Cystic Fibrosis: A Web-Based Assessment

Tuchman

Kalogiros

Forke

et al. 2010

International Journal of Sexual Health

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What Deficits in Sexual and Reproductive Health Knowledge Exist among Women with Cystic Fibrosis? A Systematic Review

Gage

2012

Health & Social Work

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The life span of patients with cystic fibrosis (CF) continues to extend due to advances in treatments and care. The rate of pregnancy for female patients with CF has also continued to rise. The purpose of this study was to systematically review the available literature on female patients with CF and their knowledge of sexual and reproductive health. A priori, the research question was posed: What deficits in sexual and reproductive health knowledge exist among women with cystic fibrosis? Three broad areas of knowledge lacking in female patients with CF were identified: physiological, genetic, and psychosocial. The results imply female patients with CF are not equipped with adequate information for the decision-making process involved in sexual and reproductive choices. Social workers play an important and dynamic role on the multidisciplinary CF care team and can improve the quality of life for women with CF by addressing the psychosocial processes associated with the disease. Because of social work's important role in the holistic care approach to CF and other chronic and debilitating illnesses, social work literature should focus greater attention on these issues.

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Adults with Cystic Fibrosis and (In)fertility: How Has the Health Care System Responded?

Cited by 6 publications

References 9 publications

Experiences, Knowledge Gaps and Information Needs of Women in Australia with Transfusion Dependent Thalassaemia in Regard to Fertility and Pregnancy

Experiences, Knowledge Gaps and Information Needs of Women in Australia with Transfusion Dependent Thalassaemia in Regard to Fertility and Pregnancy

Reproductive Knowledge and Preferences of Adolescents and Adults with Cystic Fibrosis: A Web-Based Assessment

What Deficits in Sexual and Reproductive Health Knowledge Exist among Women with Cystic Fibrosis? A Systematic Review

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