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Quality Of Life Of Adult Patients With A Bladder Exstrophy–Epispadias Complex
S94
ESPUN Programme 2009
SESSION I: BLADDER EXSTROPHY / EPISPADIAS / HYPOSPADIAS
# S01-1 (O) LIVING WITH BLADDER EXSTROPHY e The Patients’ Perspective Brigitte SELINER1, Rita GOBET2, Petra METHENTHIN3 and Rebecca SPIRIG4 1
University Childrens hospital of Zurich, Rehabilitation, Zurich, SWITZERLAND, 2University Children’s Hospital Zurich, Urology, Zurich, SWITZERLAND, 3Berner Fachhochschule, Clinical Nursing Science, Bern, SWITZERLAND, 4University Hospital Basel, Clinical Nursing Science, Basel, SWITZERLAND
PURPOSE Bladder exstrophy (BE) is a rare but severe urogenital malformation that requires complex clinical management. It can lead to physical restriction as well as to psychosocial and psychosexual malfunction. Unfortunately, little is known about the experiences of persons living with BE from childhood into adulthood. The aim of this study was to explore the experiences of persons with BE, their perception of life and the way they cope with their illness.
MATERIAL AND METHODS In this retrospective qualitative study semistructured interviews were conducted with
four women and sixteen men (38 to 68 years). The data were analyzed by content analysis techniques.
RESULTS Two major categories with two to five subcategories emerged from the data.The first major category ‘‘Living with BE’’ was categorized by episodes and experiences that were repeated throughout the persons life, such as ‘‘being in the hospital,’’, ‘‘living with symptoms’’, ‘‘being different’’, ‘‘showing oneself’’, and ‘‘gathering information.’’. The two subcategories ‘‘parents’’ and ‘‘partners’’ demonstrate that they are affected too and provide considerable support to the
person with BE. The second major category ‘‘Nonetheless, having a good life’’, describes the perception of the affected persons to lead a life worth living despite the BE.
CONCLUSIONS The results of this study illustrates that persons with BE can live a good life, despite repeated health related challenges, if the support provided by their caregivers permits a positive attitude toward their illness in relation to their history. For this, patients with BE and their family members require continuous and highly competent treatment, counseling and education by an interdisciplinary skilled team.
# S01-2 (O) QUALITY OF LIFE OF ADULT PATIENTS WITH A BLADDER EXSTROPHYeEPISPADIAS COMPLEX `s LIARD-ZMUDA3, Philippe GRISE4, Philippe RAVASSE5, Jannick RICARD6, Viviane WITTMEYER1, Estelle AUBRY2, Agne 7 2 ´mi BESSON2 Jacques BISERTE , Bernard HERBAUX and Re 1 Jeanne de Flandre- CHRU Lille, de´partement de chirurgie et orthope´die de l’enfant, Lille Cedex, FRANCE, 2Jeanne de Flandre-CHRU Lille, poˆle de pe´diatrie de´partement de chirurgie et orthope´die de l’enfant, Lille Cedex, FRANCE, 3CHRU Rouen, Clinique de chirurgicale infantile, Rouen, FRANCE, 4CHRU Rouen, Urologie, Rouen, FRANCE, 5Chru Caen, Service de chirurgie infantile, Caen Cedex 9, FRANCE, 6CHRU Amiens, Service de chirurgie infantile, Amiens, FRANCE, 7Hoˆpital huriez CHRU Lille, Urologie, Lille Cedex, FRANCE
Bladder Exstrophy-Epispadias Complex (BEEC) is a rare congenital malformation which requires a lifetime follow-up. Quality of life (QOL) is one of the concerns of the patients and their parents.
with a BEEC from 1957 to 1990. To evaluate the QOL, we used the Short-Form (SF-36) Health Survey questionnaire and a local social and sexual questionnaire. Of the 25 patients, 15 had undergone a stage reconstruction of BEEC and 10 had primarily or secondarily undergone a urinary diversion.
MATERIAL AND METHODS
RESULTS
We present a multicenter study which evaluated the QOL of 25 adult patients born
The scores obtained for our patients were statistically under the norm-based
PURPOSE
scores for 2 of the eight health concepts: limitations in physical activities because of health problems and general health perception. The results were statistically different among the patients depending on dryness, method of voiding urine, and reconstruction/diversion. The patient’s scores were not different regarding the gender, number of intervention, sexual life, aesthetic aspect and renal function. Nine patients are married and 2 are in long-term relationship. Twenty-two patients achieved examination success.
ESPUN Programme 2009 Seventeen patients had a full-time work. Twelve men were capable of penetrative intercourse and 6 women managed penetrative intercourse. Thirteen children were born from 13 patients (3 women and 10 men).
S95 CONCLUSIONS Patients had obtained scores under the norm-based scores only in two health concepts. Moreover, they are generally well-
adjusted in society. Urinary diversions are usually well tolerated and remain a therapeutic option when incontinence interferes with social life or when renal function is compromised.
# S01-3 (O) PARENTS OF CHILDREN WITH AMBIGUOUS GENITALIA: STORIES OF EXPERIENCES OF RECONSTRUCTIVE GENITAL SURGERIES AND FINDING HARMONY Caroline SANDERS1, Bernie CARTER2, Lynne GOODACRE3 and Alan ARMSTRONG4 1
RLCH, urology, Liverpool, UNITED KINGDOM, 2UCLAN, Nursing, Preston, UNITED KINGDOM, 3UCLAN, Public Health, Preston, UNITED KINGDOM, 4UCLAN, Department of Nursing, Preston, UNITED KINGDOM
PURPOSE To explore and understand parents’ experiences of their child’s genital abiguity and reconstructive genital surgeries.
MATERIAL AND METHODS Narrative inquiry was chosen and data were collected through eighteen in-depth narrative interviews with a purposive nonrandom sample of fifteen parents of 11 children (aged 0-11 years). Narrative analysis resulted in three keystone stories which contained aggregate stories and foundational stories. The three keystone story themes were parents’ stories about their child, about being a parent of a child
with AG and about healthcare professionals.
RESULTS Interpretation and synthesis of the three keystone stories revealed three core elements fundamental to parents’ stories; shock, protection and anxiety. The synthesis reveals how even though parents had to cope with shock, protect their child whilst experiencing anxiety they were able to achieve a sense of harmony about their child. When parents were supported by healthcare staff who they trusted, they were able to develop new skills at an earlier stage in their journey. Information and control over the disclosure of information to others was important for parents. Parents
believed that reconstructive surgeries were necessary to enable them to protect their child and some felt that the surgeries were necessary to bond with their child. None of the parents kept the AG surgeries secret from their child although they did not all share information openly with family or friends. Harmony is a concept that brought consistency and agreement together resulting in parents embracing their experiences holistically and giving their experiences meaning.
CONCLUSIONS Parents overcame the tensions inherent in their experience of their child’s AG and found a sense of harmony. Harmony has not previously been described in the literature.
# S01-4 (P) HOW DO TOILET-TRAINED KIDS VOID FOLLOWING TUBULARIZED INCISED PLATE REPAIR OF HYPOSPADIAS? Waleed EASSA, Fayez ALMODHEN, Alex BRZEZINSKI, Jean-Paul CAPOLICHIO, Roman JEDNAK and Mohamed EL SHERBINY McGill University Health Center, Pediatric Urology, Montreal, CANADA
PURPOSE We report the functional outcome of asymptomatic, toilet trained children following uncomplicated tubularized incised plate (TIP) repair of hypospadias.
MATERIAL AND METHODS The records of patients who underwent a TIP repair of hypospadias at the Montreal Children Hospital between April 1997 and September 2007 were reviewed. Patients
were included if they were toilet trained, asymptomatic and had flow rate data done more than 1year after TIP. Children with postoperative complications or those who required dilation were excluded. Variables predictive of outcome including the surgeon, the type of hypospadias, the presence of a hypoplastic urethra, reinforcement stitches, spongioplasty and the use of a stent were recorded. Uroflow data (peak flow, voided volume and postvoid residuals (PVR) were analyzed and plotted on previously determined agevolume dependent nomograms.
RESULTS Fifty-six patients were eligible for the study. Median age at surgery was 1.5 years. Hypospadias was distal penile in 49 (87%) and mid and proximal penile in 7 (13%). Mean follow up was 31 years (1e8) years. The uroflow curve was bell shaped in 14 (25%), interrupted in 8 (14%), slightly flattened in 28 (50%) and plateau in 6 (11%). Nomograms showed that 36 (64%) were in the 80th percentile, 11 (20%) were in 95th percentile range and 9 (16%) were plotted below 5th percentile. PVR was >
ESPUN Programme 2009
SESSION I: BLADDER EXSTROPHY / EPISPADIAS / HYPOSPADIAS
# S01-1 (O) LIVING WITH BLADDER EXSTROPHY e The Patients’ Perspective Brigitte SELINER1, Rita GOBET2, Petra METHENTHIN3 and Rebecca SPIRIG4 1
University Childrens hospital of Zurich, Rehabilitation, Zurich, SWITZERLAND, 2University Children’s Hospital Zurich, Urology, Zurich, SWITZERLAND, 3Berner Fachhochschule, Clinical Nursing Science, Bern, SWITZERLAND, 4University Hospital Basel, Clinical Nursing Science, Basel, SWITZERLAND
PURPOSE Bladder exstrophy (BE) is a rare but severe urogenital malformation that requires complex clinical management. It can lead to physical restriction as well as to psychosocial and psychosexual malfunction. Unfortunately, little is known about the experiences of persons living with BE from childhood into adulthood. The aim of this study was to explore the experiences of persons with BE, their perception of life and the way they cope with their illness.
MATERIAL AND METHODS In this retrospective qualitative study semistructured interviews were conducted with
four women and sixteen men (38 to 68 years). The data were analyzed by content analysis techniques.
RESULTS Two major categories with two to five subcategories emerged from the data.The first major category ‘‘Living with BE’’ was categorized by episodes and experiences that were repeated throughout the persons life, such as ‘‘being in the hospital,’’, ‘‘living with symptoms’’, ‘‘being different’’, ‘‘showing oneself’’, and ‘‘gathering information.’’. The two subcategories ‘‘parents’’ and ‘‘partners’’ demonstrate that they are affected too and provide considerable support to the
person with BE. The second major category ‘‘Nonetheless, having a good life’’, describes the perception of the affected persons to lead a life worth living despite the BE.
CONCLUSIONS The results of this study illustrates that persons with BE can live a good life, despite repeated health related challenges, if the support provided by their caregivers permits a positive attitude toward their illness in relation to their history. For this, patients with BE and their family members require continuous and highly competent treatment, counseling and education by an interdisciplinary skilled team.
# S01-2 (O) QUALITY OF LIFE OF ADULT PATIENTS WITH A BLADDER EXSTROPHYeEPISPADIAS COMPLEX `s LIARD-ZMUDA3, Philippe GRISE4, Philippe RAVASSE5, Jannick RICARD6, Viviane WITTMEYER1, Estelle AUBRY2, Agne 7 2 ´mi BESSON2 Jacques BISERTE , Bernard HERBAUX and Re 1 Jeanne de Flandre- CHRU Lille, de´partement de chirurgie et orthope´die de l’enfant, Lille Cedex, FRANCE, 2Jeanne de Flandre-CHRU Lille, poˆle de pe´diatrie de´partement de chirurgie et orthope´die de l’enfant, Lille Cedex, FRANCE, 3CHRU Rouen, Clinique de chirurgicale infantile, Rouen, FRANCE, 4CHRU Rouen, Urologie, Rouen, FRANCE, 5Chru Caen, Service de chirurgie infantile, Caen Cedex 9, FRANCE, 6CHRU Amiens, Service de chirurgie infantile, Amiens, FRANCE, 7Hoˆpital huriez CHRU Lille, Urologie, Lille Cedex, FRANCE
Bladder Exstrophy-Epispadias Complex (BEEC) is a rare congenital malformation which requires a lifetime follow-up. Quality of life (QOL) is one of the concerns of the patients and their parents.
with a BEEC from 1957 to 1990. To evaluate the QOL, we used the Short-Form (SF-36) Health Survey questionnaire and a local social and sexual questionnaire. Of the 25 patients, 15 had undergone a stage reconstruction of BEEC and 10 had primarily or secondarily undergone a urinary diversion.
MATERIAL AND METHODS
RESULTS
We present a multicenter study which evaluated the QOL of 25 adult patients born
The scores obtained for our patients were statistically under the norm-based
PURPOSE
scores for 2 of the eight health concepts: limitations in physical activities because of health problems and general health perception. The results were statistically different among the patients depending on dryness, method of voiding urine, and reconstruction/diversion. The patient’s scores were not different regarding the gender, number of intervention, sexual life, aesthetic aspect and renal function. Nine patients are married and 2 are in long-term relationship. Twenty-two patients achieved examination success.
ESPUN Programme 2009 Seventeen patients had a full-time work. Twelve men were capable of penetrative intercourse and 6 women managed penetrative intercourse. Thirteen children were born from 13 patients (3 women and 10 men).
S95 CONCLUSIONS Patients had obtained scores under the norm-based scores only in two health concepts. Moreover, they are generally well-
adjusted in society. Urinary diversions are usually well tolerated and remain a therapeutic option when incontinence interferes with social life or when renal function is compromised.
# S01-3 (O) PARENTS OF CHILDREN WITH AMBIGUOUS GENITALIA: STORIES OF EXPERIENCES OF RECONSTRUCTIVE GENITAL SURGERIES AND FINDING HARMONY Caroline SANDERS1, Bernie CARTER2, Lynne GOODACRE3 and Alan ARMSTRONG4 1
RLCH, urology, Liverpool, UNITED KINGDOM, 2UCLAN, Nursing, Preston, UNITED KINGDOM, 3UCLAN, Public Health, Preston, UNITED KINGDOM, 4UCLAN, Department of Nursing, Preston, UNITED KINGDOM
PURPOSE To explore and understand parents’ experiences of their child’s genital abiguity and reconstructive genital surgeries.
MATERIAL AND METHODS Narrative inquiry was chosen and data were collected through eighteen in-depth narrative interviews with a purposive nonrandom sample of fifteen parents of 11 children (aged 0-11 years). Narrative analysis resulted in three keystone stories which contained aggregate stories and foundational stories. The three keystone story themes were parents’ stories about their child, about being a parent of a child
with AG and about healthcare professionals.
RESULTS Interpretation and synthesis of the three keystone stories revealed three core elements fundamental to parents’ stories; shock, protection and anxiety. The synthesis reveals how even though parents had to cope with shock, protect their child whilst experiencing anxiety they were able to achieve a sense of harmony about their child. When parents were supported by healthcare staff who they trusted, they were able to develop new skills at an earlier stage in their journey. Information and control over the disclosure of information to others was important for parents. Parents
believed that reconstructive surgeries were necessary to enable them to protect their child and some felt that the surgeries were necessary to bond with their child. None of the parents kept the AG surgeries secret from their child although they did not all share information openly with family or friends. Harmony is a concept that brought consistency and agreement together resulting in parents embracing their experiences holistically and giving their experiences meaning.
CONCLUSIONS Parents overcame the tensions inherent in their experience of their child’s AG and found a sense of harmony. Harmony has not previously been described in the literature.
# S01-4 (P) HOW DO TOILET-TRAINED KIDS VOID FOLLOWING TUBULARIZED INCISED PLATE REPAIR OF HYPOSPADIAS? Waleed EASSA, Fayez ALMODHEN, Alex BRZEZINSKI, Jean-Paul CAPOLICHIO, Roman JEDNAK and Mohamed EL SHERBINY McGill University Health Center, Pediatric Urology, Montreal, CANADA
PURPOSE We report the functional outcome of asymptomatic, toilet trained children following uncomplicated tubularized incised plate (TIP) repair of hypospadias.
MATERIAL AND METHODS The records of patients who underwent a TIP repair of hypospadias at the Montreal Children Hospital between April 1997 and September 2007 were reviewed. Patients
were included if they were toilet trained, asymptomatic and had flow rate data done more than 1year after TIP. Children with postoperative complications or those who required dilation were excluded. Variables predictive of outcome including the surgeon, the type of hypospadias, the presence of a hypoplastic urethra, reinforcement stitches, spongioplasty and the use of a stent were recorded. Uroflow data (peak flow, voided volume and postvoid residuals (PVR) were analyzed and plotted on previously determined agevolume dependent nomograms.
RESULTS Fifty-six patients were eligible for the study. Median age at surgery was 1.5 years. Hypospadias was distal penile in 49 (87%) and mid and proximal penile in 7 (13%). Mean follow up was 31 years (1e8) years. The uroflow curve was bell shaped in 14 (25%), interrupted in 8 (14%), slightly flattened in 28 (50%) and plateau in 6 (11%). Nomograms showed that 36 (64%) were in the 80th percentile, 11 (20%) were in 95th percentile range and 9 (16%) were plotted below 5th percentile. PVR was >