Adult turner syndrome clinic: what are the patients perceptions of this specialist service?
Women with Turner Syndrome (TS) often feel well but require detailed screening for potential sequelae, which may impact on their quality of life, morbidity and mortality. They may also have psychological issues around living with the condition. It is our opinion that women with TS benefit from attending a specialised clinic and consequently an Adult TS Clinic (ATSC) was set up, however the opinion of the women attending such a service is not known. A survey was therefore conducted of the women attending our ATSC to seek their opinion of the service provided.
A questionnaire was designed to allow the individual to rate their perception of the need/importance of a specialised clinic and benefits from this service. This was handed to all attending patients over one year and was returned anonymously. 35 questionnaires were distributed with 100% response rate.
100% of women felt it was important to attend this clinic and 88% appreciated that it provided an overall general check. 81% of women believed that they gained more information from this clinic, 74% felt that it provided a better opportunity to talk to the doctors and nurses and 57% felt more reassured about their condition. Only 34% of women indicated that it gave them a greater opportunity to meet other people with the same condition.
In summary the majority of women perceived the specialised clinic offered an overall general check, provided more opportunity to discuss with medical staff and felt more informed and reassured about the condition. Most importantly all participants recognised the importance of attending this clinic. In conclusion from a patient perspective the setting up of an ATSC has improved delivery of care to women with TS.