It is well recognised that transition from paediatric to adult practice is stressful for patients and parents. This paper describes a questionnaire-based study of 80 teenagers with chronic bladder disease (spina bifida exstrophy or other acquired neurogenic bladder condition) of whom 58 responded (mean age, mode 15, median 19). Of these 55 were pre-transfer, three were post-transfer. The following parameters were asked about and the results indicate that many patients are ill-prepared for transition.
- 63% related that their self-knowledge of the disease was good except the knowledge of their drug side-effects.
- 44% knew the impact of their condition on puberty, although a further 36% knew it ‘more or less’ or did not know.
- 40% knew more or less about the prevention of urinary tract infection.
- In addition open questions identified the life-long bond between the patient and the paediatric urologist.
The subjects ‘relationships, sexuality and fertility’ received little attention in most cases but where they did, the patients were pleased that they had been raised by the paediatric urologist. Despite the limitations of this study it is clear that patients arrive into adult practice significantly unprepared for independent consultations and that all urologists should aim for planned transition over a period of time. Adult urologists should help their paediatric colleagues in organising this.
