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

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 we...

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Bibliographic Details
Published in:Journal of neurology 2019-03, Vol.266 (3), p.707-716
Main Authors: 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. Brescia, Tedeschi, G., Bonavita, S.
Format: Article
Language:English
Subjects:
Adult
Children
Decision making
Decision Making - physiology
Diagnosis
Female
Humans
Italy
Male
Medical personnel
Medicine
Medicine & Public Health
Middle Aged
Multiple sclerosis
Multiple Sclerosis - diagnosis
Multiple Sclerosis - psychology
Neurology
Neuroradiology
Neurosciences
Online Systems
Original Communication
Parents - psychology
Patients
Phenotypes
Pregnancy
Statistics, Nonparametric
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Summary: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.
ISSN:0340-5354
1432-1459
DOI:10.1007/s00415-019-09193-4