Tables
- TABLE 1
Characteristics of included lung diseases
Condition Prevalence Age of diagnosis Prognosis Effect on female fertility/pregnancy Asthma Common: 339 million worldwide [10]
Childhood asthma more common in males; adult asthma more common in females [11]Usually diagnosed in childhood but can affect any age [12] Estimated mortality rate of 0.19 deaths per 100 000; higher in low to middle income countries [13] Some studies suggest a link between asthma and infertility. In pregnancy, asthma may improve or worsen – worsening is more common in severe asthmatics [3] Cystic fibrosis Rare: 1 in 2500–3000 live births – around 85 000 worldwide [14].
Most common in Caucasians, least common in Asians [15]75% diagnosed by the age of 2 in Western societies [16]. Many countries have newborn screening Average life expectancy 35–40 years in USA and UK; lower in developing countries [17] Some impact on fertility; pregnancy carries risks of health complications for mother and child and increased treatment burden [3] LAM Very rare: estimates between 3 and 5 cases per million [18]. Almost exclusively affects women [19] Average age of diagnosis is approximately 35 [20] Estimated median transplant-free survival time for LAM patients in the US is 29 years from symptom onset and 23 years from diagnosis [21] No reported impact on fertility; LAM may be accelerated by oestrogen so may develop or worsen in pregnancy and lead to health complications for the mother [5] Sarcoidosis Rare: estimates between 20 and 400 per million depending on country [22] 75% in UK diagnosed between ages 30 and 60 [23]; average age of diagnosis in USA is 55 [24] Usually normal; 60% will go into remission, 10% will develop serious disease that may shorten life expectancy [25] Usually no impact [7] LAM: lymphangioleiomyomatosis.
- TABLE 2
Excluded respondents
Reason for exclusion Respondents Returned an incomplete survey 88 Had more than one lung condition 64 Had a lung condition other than CF, LAM, asthma or sarcoidosis 47 Stated they did not have a lung condition or did not answer what lung condition they had 22 Developed a lung condition after their last pregnancy 21 Did not answer if they had ever been pregnant or state when they had been pregnant 8 CF: cystic fibrosis; LAM: lymphangioleiomyomatosis.
- TABLE 3
Sociodemographic characteristics of included participants
Lung condition Cystic fibrosis, all 172 (52.60%) Asthma only 87 (26.61%) Sarcoidosis only 43 (13.15%) LAM only 25 (7.65%) Total 327 Country of residence Spain 87 (26.61%) UK 76 (23.24%) Germany 37 (11.31%) Ireland 21 (6.42%) Belgium 16 (4.89%) Denmark 13 (3.98%) USA 12 (3.67%) Australia 11 (3.36%) Greece 8 (2.45%) Switzerland 7 (2.14%) Netherlands 6 (1.83%) Norway 6 (1.83%) Poland 5 (1.53%) Other 16 (4.89%) Not given 6 (1.83%) Total 327 Pregnancy status Never pregnant 101 (30.89%) Currently pregnant 23 (7.03%) Last pregnancy in 2010 or after 143 (43.73%) Last pregnancy in 2000s 42 (12.84%) Last pregnancy before 2000 17 (5.20%) Last pregnancy date not given 1 (0.31%) Total 327 LAM: lymphangioleiomyomatosis.
- TABLE 4
Main themes from open-ended data analysis with illustrative quotes
Theme Illustrative quotes Pregnancy and childbirth is one thing, but the concern about caring for a child can be greater “My whole life has changed with this disease, even without a child. That's why you think twice if you can look after yourself and a child.” (Spanish sarcoidosis respondent)
“It is still an issue whether a second or third child will come, because being a mother with a lung disease demands a lot and you sometimes don't feel up to the task.” (German sarcoidosis respondent)
“I am afraid that I will not be able to have children and that even if I do, I may die early and leave them without a mother” (Greek CF respondent)
“I see pregnancy as very difficult for women with severe-grade cystic fibrosis and I am always tortured by it since for most people, the dream is to have a family. I especially feel bad for my partner since he loves children and I do not know if we can be parents together in the future.” (Spanish CF respondent)Fear of a child getting the lung condition “I wasn't properly informed about the risks. I just knew about a not entirely clear possibility of genetic disposition.” (German sarcoidosis respondent)
“The prospects of passing my asthma to any future children frightens me and I would consider genetic testing.” (UK asthma respondent)
“I have thought about the risk of my child getting my condition, and thus consulted professionals for a genetic analysis of my husband to make sure we could have children without the condition.” (Danish CF respondent)Receiving no or conflicting advice and understanding risk “How to deal with GPs who don't know enough about managing asthma, one even suggested I moved house as there was nothing more to be done for me.” (UK asthma respondent)
“Unfortunately no one could really provide information. The answer was always … it gets better, stays the same, gets worse… not really insightful.” (German sarcoidosis respondent)
“We hoped that after giving birth I would return to my normal state, but that was not the case…my general condition is not at all as before my pregnancy. I must say that we weren't really prepared for this, pregnancy was the unknown but we never thought that my general condition would be what it is today so long after.” (Belgian CF respondent)Worries about medication “I'm not sure … whether my medication could harm my unborn child, especially in the event of an emergency.” (German asthma respondent)
“Information about conceiving and also breastfeeding whilst taking Rapamycin. I believe only around three women worldwide have been pregnant whilst taking this medication and no animal testing or lab testing has taken place in this area.” (UK LAM respondent)
“After birth when my chest was sore from using gas and air … it was dismissed … I took it upon myself to increase my preventer medication with no advice given as to how this may or may not affect my milk.” (UK asthma respondent)CF: cystic fibrosis; LAM: lymphangioleiomyomatosis.
- TABLE 5
Recommendations for practice
Initiate discussions around family planning with respiratory patients during routine appointments Provide clear, evidence-based information about fertility, safety of changing or stopping treatment for the patient and the fetus, impact of pregnancy and labour on current and future health, genetic predisposition, and lifestyle factors Signpost to psychological support and genetic testing where appropriate Provide information on the safety of respiratory medications during breastfeeding Ensure patients receive holistic care from both respiratory and pregnancy health professionals and that pregnancy health professionals can refer patients with queries to relevant respiratory professionals and evidence-based information
Supplementary Materials
Supplementary Material
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Survey 00357-2021.SUPPLEMENT
Supplementary tables 00357-2021.supplementary_tables
Vol 7 Issue 4
Table of Contents
Family planning, pregnancy and birth in women with lung conditions: a worldwide survey
