Family Planning Decision Making is Affected in People with Multiple Sclerosis

Abstract

Many people diagnosed with multiple sclerosis (MS) are of child bearing age, therefore family planning is an important concern. This survey aimed to understand family planning decision making in people with MS (pwMS). In total, 332 pwMS were recruited from a specialist patient panel agency to participate in a smartphone-enabled standing panel, conducted across the United States (USA; n=76), United Kingdom (UK; n=51), France (n=53), Germany (n=50), Italy (n=51) and Spain (n=51). We submitted a survey consisting of 70-80 questions that focussed on decision-making and information sources in family planning, and behaviour during/after pregnancy. Male patients did not respond to specific questions on pregnancy. Of 332 participants, 271/332 (82%) were female; 185/271 (56%; n=185) of these females were of child bearing age (18-45 years). In the 35-45 age subgroup, 77/271 (28%) were less likely to have children (40% USA, 50% UK, 45% France, 60% Germany, 30% Italy, 38% Spain) than females of the same age in the general population USA and United Nations censuses (16-19%). Overall, 116/332 (35%) participants stated that the disease altered (69/332, 21%) or made them decide against (47/332, 14%) having children; 22/332 (6%) indicated the disease delayed their plans for having children, 50/332 (15%) led to minimal impact and 144/332 (44%) indicated no impact on plans. Primary sources of information on family planning were: 1.Healthcare professionals (HCPs): neurologists (41%), obstetricians (16%), general practitioners and family physicians (15%), MS nurses (9%); 2.Search engines and online (4%); 3.Various (5%). The remaining participants (10%) opted for 'non-applicable'. In total, 258/332 (78%) pwMS indicated family planning was not considered when selecting treatment. Overall, 56% of pwMS reported that the disease affected, with different degrees of impact, their family planning decision-making. HCPs were the main source of information.