The ambitions of adolescents born with exstrophy: a structured survey

Abstract

A survey is reported by authors in the UK to determine factors that control the quality of life of adolescent patients with exstrophy; as expected, affected adolescents were resilient characters, and they stressed the importance of patients’ views after surgery to correct this condition.OBJECTIVETo determine the factors that control quality of life as perceived by adolescent patients with bladder exstrophy, and to compare their views using standard instruments.PATIENTS AND METHODSSixteen patients (mean age 19 years, range 16–21, 11 male and five female) were recruited from the departmental database; they represented 46% of those available for the study. After giving informed consent, each had a semi‐structured interview, augmented by completing a self‐reported scale, with the principal investigator. They then completed the Culture‐Free Self‐Esteem Inventory‐2 (CFSEI‐2) and the Brief Symptom Inventory (BSI). The interviews were recorded on audiocassette, transcribed verbatim and evaluated using interpretative phenomenological analysis.RESULTSIn the interviews there was a remarkable consistency in the domains identified as important to the patients. There was a wish to be normal and to be treated as such. This was defined (amongst other items) as being able to void with an appropriate noise, being treated as peers at school and at home, and having an umbilicus. All patients reported some bullying (all but one in the past), but only severely in three. Concerns about self‐image centred on scars and genital appearance. Very similar and effective coping strategies had been created, including practical (e.g. suitable clothes) and emotional (e.g. joking, control of revealed information) aspects. Special arrangements made to help (care by a special assistant or use of a disabled lavatory at school) served only to emphasize their abnormality and were resented. No overt psychiatric or psychological morbidity was detected. There was no difference in scores with the CFSEI‐2 or BSI from established age‐related norms.CONCLUSIONThis study confirms the anecdotally reported strong resilience and personality of adolescents with exstrophy. The domains that patients considered important were not those that their carers might have expected or that are used in standard quality‐of‐life instruments. No morbidity was identified by the two instruments used. In exstrophy, and perhaps in other uncommon conditions, the patients' views of relevant domains should be considered in assessing quality of life.

Gender‐associated differences in the psychosocial and developmental outcome in patients affected with the bladder exstrophy‐epispadias complex

“…first smile 2 (1-2); reaching out 3.5 (3-4); sitting without help 7.4 (7-8.6); walking without help 14 (13)(14)(15)(16)(17); and speech development, i.e. first word spoken 10 (9-12.4) and first three-word sentence 19.5 (18)(19)(20)(21)(22). Despite early major surgical interventions and long immobilization after bladder closure, with or without osteotomy, all milestones were reached within the normal range, with no differences between females and males.…”

“…Without doubt, preserving kidney function has the highest priority, but should voiding patterns be graded higher than cosmetic aspects of genital reconstruction or fertility? Although it is of major interest to physicians that their patients are satisfied with the treatment provided, efforts to investigate the long-term psychosocial and developmental outcome of patients with BEEC have been weak [6][7][8][9][10][11][12][13][14][15][16][17][18][19]. Studies with no disease-specific assessment instruments may lack the sensitivity to detect the specific functional impairments and psychosocial difficulties associated with BEEC [16,17].…”

A critical evaluation of the use of interpretative phenomenological analysis (IPA) in health psychology

“…Although recognising that the use of verbatim extracts is "central to IPA" (page 608), Wilson, Christie and Woodhouse (2004) do not provide quotations in an effort to save space, although they do state that these may be obtained through correspondence with the authors if wished.…”

“…52. Wilson, Christie and Woodhouse (2004) Investigation of factors determining quality of life as perceived by adolescents with bladder exstrophy…”

Aesthetic aspects of abdominal wall and external genital reconstructive surgery in bladder exstrophy-epispadias complex

“…sider the abnormal appearance of the external genitalia to be of greater importance than incontinence [7].…”