The objective of the study was to prospectively determine the knowledge and attitude in Indonesian girls and parents of patients diagnosed with Turner Syndrome (TS) towards future fertility treatment possibility. Data collected from in-depth interviews with 20 TS patients or parents. The first group was composed of 16 patients selected from Indonesian Turner Syndrome Society and 4 patients from dr. Cipto Mangunkusumo National Hospital Jakarta. All participants were stratified by characteristics, physical appearance, hormonal therapy and TS knowledge and attitude towards future fertility treatment possibility.
More than half of the TS patients belong to the support grup have better knowledge than the patients in the non support group. This study showed that 31.25% patients from support group and 25% patients from non support group believed that TS patients still have normal social life, but still concern about TS fertility (support group 87% and non support group 100%). Most of them (support group 93.75% and non support group 100%) agree to have possible fertility treatment, but 31.25% of them insisted on lower cost of hormonal treatment and medication. The greatest barriers for accepting fertility preservation by the parents and TS patients were lack of information (41.2%), fear of complication (22.1%) and lower cost for hormonal treatment (15.3%).
The challenges of counseling and fertility treatment for TS patients in Indonesia are the time pressure diagnosis and the possible fertility treatment and lack of knowledge about TS fertility condition by pediatric endocrinologist, fertility experts and parents; therefore a team consisting of pediatric endocrinologist, infertility specialists and support group is recommended in these setting.