Background: Little is known about the influence of multiple sclerosis (MS) diagnosis on parenthood attitude in people with MS (pwMS). Objective: To investigate the impact of diagnosis, clinical features and external disease-related influences on parenthood decision-making in Italian pwMS. Methods: A web-based survey was posted on SMsocialnetwork.com to investigate clinical status, parenthood desire, influences on family planning, pregnancy outcomes, abortions and adoptions of pwMS. Results: 33/395 respondents never wanted to become parent because of MS (“anti-parenthood after diagnosis”). 362 declared to be in favor of parenthood. 51% pwMS having a child by the survey time had already received the MS diagnosis at first childbirth. The frequency of a second child in pwMS after diagnosis was 38% compared to 67% in people without yet MS diagnosis. 16% of pwMS were discouraged to become parent after diagnosis, mainly by medical personnel. In 71% of respondents, diagnosis did not delay the decision to become parent and only 39% were counseled by treating physician to plan pregnancy. Patients’ distribution according to the clinical phenotype (exclusively relapsing vs exclusively progressive) showed a higher proportion of progressive patients in the “anti-parenthood after diagnosis” subgroup. Conclusion: MS diagnosis impacted dramatically on the life project of 7% of pwMS that decided not to have children because of the disease and in pro-parenthood pwMS impacted especially on having the second child. Only a minority was counseled to plan pregnancy. A worse disease course driving to a progressive phenotype at survey time might have negatively impacted on parenthood desire.

Factors interfering with parenthood decision-making in an Italian sample of people with multiple sclerosis: an exploratory online survey

De Mercanti S.;Clerico M.;Laroni A.;
2019

Abstract

Background: Little is known about the influence of multiple sclerosis (MS) diagnosis on parenthood attitude in people with MS (pwMS). Objective: To investigate the impact of diagnosis, clinical features and external disease-related influences on parenthood decision-making in Italian pwMS. Methods: A web-based survey was posted on SMsocialnetwork.com to investigate clinical status, parenthood desire, influences on family planning, pregnancy outcomes, abortions and adoptions of pwMS. Results: 33/395 respondents never wanted to become parent because of MS (“anti-parenthood after diagnosis”). 362 declared to be in favor of parenthood. 51% pwMS having a child by the survey time had already received the MS diagnosis at first childbirth. The frequency of a second child in pwMS after diagnosis was 38% compared to 67% in people without yet MS diagnosis. 16% of pwMS were discouraged to become parent after diagnosis, mainly by medical personnel. In 71% of respondents, diagnosis did not delay the decision to become parent and only 39% were counseled by treating physician to plan pregnancy. Patients’ distribution according to the clinical phenotype (exclusively relapsing vs exclusively progressive) showed a higher proportion of progressive patients in the “anti-parenthood after diagnosis” subgroup. Conclusion: MS diagnosis impacted dramatically on the life project of 7% of pwMS that decided not to have children because of the disease and in pro-parenthood pwMS impacted especially on having the second child. Only a minority was counseled to plan pregnancy. A worse disease course driving to a progressive phenotype at survey time might have negatively impacted on parenthood desire.
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e-health; Multiple sclerosis; Online survey; Parenthood; Adult; Decision Making; Female; Humans; Italy; Male; Middle Aged; Multiple Sclerosis; Parents; Statistics, Nonparametric; Online Systems
Lavorgna L.; Esposito S.; Lanzillo R.; Sparaco M.; Ippolito D.; Cocco E.; Fenu G.; Borriello G.; De Mercanti S.; Frau J.; Capuano R.; Trojsi F.; Rosa L.; Clerico M.; Laroni A.; Morra V.B.; Tedeschi G.; Bonavita S.
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Utilizza questo identificativo per citare o creare un link a questo documento: https://hdl.handle.net/2318/1740095
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