Teenagers and young adults with myelomeningocele and clean intermittent catheterisation urological and psychosocial aspects

Abstract

Background: Clean intermittent catheterisation (CIC) was introduced early in 1970 and was a urological revolution for patients with different diagnoses and bladder emptying difficulties. In late 1970, the technique with CIC began to be used for children with myelomeningocele (MMC) in Göteborg. The aim was to evaluate the urological and psychological aspects of long-term experience with CIC. Patients and methods: Eighty-nine individuals were investigated with urography and voiding cystourethrography (VCUG) before they began CIC-treatment. Twenty-six of these individuals, with experience of another bladder emptying method, were interviewed about their daily routines and practical aspects of CIC. In addition, 22 of the same group were asked to give a subjective evaluation of their psychosocial life situation using open-ended questions. Retrospectively, 28 males and 31 females all treated with CIC for at least 10 years and all followed urological according to a standardized protocol were studied in order to evaluate the urethral complication rate.Results: After introduction of CIC there was a positive effect on radiological appearance of the upper urinary tract. However, in individuals with both dilatation and reflux there was a risk of deterioration. The opinions about long-term CIC expressed by the individuals, self-CIC was well accepted as part of daily life. No subjects wanted to return to their previous voiding technique. After self-CIC was introduced, urinary incontinence was not considered a severe psychosocial problem. However, when another person inserted the catheter they experienced pain and embarrassment. Specific information regarding sexual functioning was asked for. After puberty the incidence of severe urethral lesions in boys had not increased and no lesions were noticed in girls: the possible reason could be use of catheters of larger size with less pointed tips, and self-CIC rather than assisted CIC. All incidences of difficulties with inserting the catheter and hematuria in girls were solved either spontaneously or by temporary use of lubricant gel or after change from intravesical to oral administration of anticholinergics. Conclusions: Long-term CIC seemed to benefit the radiological appearance of the upper urinary tract. No one wanted to return to the previous bladder emptying method. Urinary incontinence was not considered a severe psychosocial problem. The rate of urethral complications at long-term CIC was low for boys and none of them serious in females. Important factors seem to be use of as large catheter size as possible and early start of self-CIC. Furthermore, it is important to have a close and frequent support from a team that includes a trained urotherapist.