Urinaryand Fecal Incontinence

Transcription

1 Monika Equit Heike Sambach Justine Niemczyk Alexander von Gontard Urinaryand Fecal Incontinence A Training Program for Children and Adolescents

2 Urinary and Fecal Incontinence

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4 Urinary and Fecal Incontinence A Training Program for Children and Adolescents Monika Equit Heike Sambach Justine Niemczyk Alexander von Gontard

5 Library of Congress Cataloging-in-Publication Data is available via the Library of Congress Marc Database National Library of Canada Cataloguing in Publication Data Library and Archives Canada Cataloguing in Publication Equit, Monika, 1978 [Ausscheidungsstörungen bei Kindern und Jugendlichen. English] Urinary and fecal incontinence: a training program for children and adolescents/monika Equit, Heike Sambach, Justine Niemczyk, Alexander von Gontard. Translation of: Ausscheidungsstörungen bei Kindern und Jugendlichen. Includes bibliographical references. Issued in print and electronic formats. ISBN (pbk.), ISBN (pdf), ISBN (epub) 1. Urinary incontinence in children. 2. Urinary incontinence in children Treatment. 3. Fecal incontinence in children. 4. Fecal incontinence in children Treatment. I. Gontard, Alexander von, author. II. Sambach, Heike, author. III. Niemczyk, Justine, author. IV. Title. V. Title: Ausscheidungsstörungen bei Kindern und Jugendlichen. English RJ476.I6E C C English translation prepared by Octavia Harrison with assistance of Alexander von Gontard, Monika Equit, and Justine Niemczyk by Hogrefe Publishing PUBLISHING OFFICES USA: Hogrefe Publishing, 38 Chauncy Street, Suite 1002, Boston, MA Phone (866) , Fax (617) ; customerservice@hogrefe-publishing.com EUROPE: Hogrefe Publishing, Merkelstr. 3, Göttingen, Germany Phone , Fax ; publishing@hogrefe.com SALES & DISTRIBUTION USA: Hogrefe Publishing, Customer Services Department, 30 Amberwood Parkway, Ashland, OH Phone (800) , Fax (419) ; customerservice@hogrefe.com UK: Hogrefe Publishing c/o Marston Book Services Ltd, 160 Eastern Ave., Milton Park, Abingdon, OX14 4SB, UK Phone , Fax ; direct.orders@marston.co.uk EUROPE: Hogrefe Publishing, Merkelstr. 3, Göttingen, Germany Phone , Fax ; publishing@hogrefe.com OTHER OFFICES CANADA: Hogrefe Publishing, 660 Eglinton Ave. East, Suite , Toronto, Ontario, M4G 2K2 SWITZERLAND: Hogrefe Publishing, Länggass-Strasse 76, CH-3000 Bern 9 Should the print edition of this book contain a CD/DVD, then all material/worksheets included on the CD/DVD have been included in this e-book edition. Copyright Information The e-book, including all its individual chapters, is protected under international copyright law. The unauthorized use or distribution of copyrighted or proprietary content is illegal and could subject the purchaser to substantial damages. The user agrees to recognize and uphold the copyright. License Agreement The purchaser is granted a single, nontransferable license for the personal use of the e-book and all related files. Making copies or printouts and storing a backup copy of the e-book on another device is permitted for private, personal use only. Other than as stated in this License Agreement, you may not copy, print, modify, remove, delete, augment, add to, publish, transmit, sell, resell, create derivative works from, or in any way exploit any of the e-book s content, in whole or in part, and you may not aid or permit others to do so. You shall not: (1) rent, assign, timeshare, distribute, or transfer all or part of the e-book or any rights granted by this License Agreement to any other person; (2) duplicate the e-book, except for reasonable backup copies; (3) remove any proprietary or copyright notices, digital watermarks, labels, or other marks from the e-book or its contents; (4) transfer or sublicense title to the e-book to any other party. These conditions are also applicable to any audio or other files belonging to the e-book. Cover illustration: Daniel Kleimenhagen, Designer AGD Format: PDF ISBNs (print), (pdf), (epub)

6 Table of Contents Preface... vii Introduction Theoretical Background Chapter 1: Incontinence During Childhood and Adolescence Nocturnal Enuresis Definition and Classification Subtypes Prevalence Differential Diagnoses and Comorbid Disorders Etiology Daytime Urinary Incontinence Definition and Classification Subtypes Prevalence Differential Diagnoses and Comorbid Disorders Comorbid Psychological Disorders Etiology Fecal Incontinence (Encopresis) Definition and Classification Subtypes Prevalence Differential Diagnoses and Comorbid Disorders Etiology Chapter 2: Assessment Standard Diagnostic Assessment History Development and Family History The 48-Hour Bladder Diary Physical Examination Sonography/Urine Analysis Extended Assessment for Complex Elimination Disorders Uroflowmetry Bacteriology Further Pediatric and Urologic Diagnostic Steps Psychological Tests Chapter 3: Treatment of Incontinence General Treatment Principles Treatment of Fecal Incontinence... 25

7 vi Table of Contents 3.3 Treatment of Daytime Urinary Incontinence Urge Incontinence Voiding Postponement Dysfunctional Voiding Treatment of Nocturnal Enuresis Urotherapy as a Treatment for Complex Elimination Disorders Definition Scientific Evidence Therapy Manual Chapter 4: Description and Structure of the Manual Development of the Manual Formal Aspects of the Training Contents of the Sessions Including the Parents Application as Individual Training Application to Adolescents Chapter 5: Conducting the Individual Sessions Bladder Training Session 1: Introduction, Defining Problems and Goals Bladder Training Session 2: Anatomy and Physiology Bladder Training Session 3: Pathophysiology of Wetting and Coping With Stress Bladder Training Session 4: Drinking Bladder Training Session 5: Going to the Toilet, Hygiene, and Constipation Bladder Training Session 6: Emotions, Body and Bladder Perception Bladder Training Session 7: Knowledge Check, Goal Analysis, Outlook Bowel Training Session 1: Problem and Goal Analysis, Pathophysiology of Fecal Incontinence Bowel Training Session 2: Diet and Exercise Chapter 6: Evaluation of the Treatment Sample Method Results Conclusion Final Remarks References Appendix... 91

8 Preface Elimination disorders are common and stressful disorders for children and adolescents. Additionally, they are often associated with comorbid psychological disorders. Elimination disorders include nocturnal enuresis (nighttime wetting), daytime urinary incontinence (functional urinary incontinence) and soiling (fecal incontinence or encopresis). With specific evidence-based treatment methods, most children and adolescents can be treated successfully. These standard treatments, described in detail by von Gontard and Nevéus (2006), should be applied first. But there is a group of children and adolescents who do not respond to standard treatment and do not achieve continence. Generally, these children are affected by complex elimination disorders. What does this term comprise? On the one hand, these are children suffering from multiple elimination disorders (any combination of nocturnal enuresis, daytime urinary incontinence, fecal incontinence, and constipation). On the other hand, these children are often affected by comorbid psychological disorders: 20 30% of children with nocturnal enuresis, 20 40% of those with daytime urinary incontinence, and 30 50% of children with fecal incontinence have at least one other psychological disorder (von Gontard, Baeyens, van Hoecke, Warzak, & Bachmann, 2011). These include predominantly externalizing disorders as attention deficit hyperactivity disorder (ADHD) or conduct disorders. If these disorders remain unnoticed or untreated, the compliance of the children as well as the treatment success will be decreased (Crimmins, Rathburn, & Husman, 2003). Furthermore, subgroups of children without obvious risk factors is also more difficult to treat and more likely to encounter a relapse or have continuous incontinence as was shown in population-based longitudinal studies (Heron, Joinson, Croudace, & von Gontard, 2008). These relapses and persistent trajectories with continuing incontinence might be due to genetic and other congenital factors. These chronically incontinent patients usually exhibit these problems from early age onwards into adolescence and even adulthood. In these cases, incontinence is often associated with psychological strain, low self-esteem, hopelessness, and resignation. Moreover, problematic familial interaction can impede the treatment. Parents often show higher treatment motivation than children. These problematic parent child relationships can result in oppositional behavior of the children and in escalating conflicts. On the other hand, some parents think they have made mistakes in their childrearing; they feel responsible for their children s incontinence and have feelings of guilt. Sometimes parents also see the incontinence as a deliberate provocation and react with punishment, which leads to further dysfunctional interactions. All these groups of children have in common that they are resistant to standard treatment. This is especially stressful for children but also for parents. Therapy resistance despite of correct treatment is perceived as a personal failure. This manual was developed for these children. The aim was to offer an efficient and structured treatment within a limited number of sessions. The aim is to encourage children to actively restart their treatment and not to give up. Parents and children show a high acceptance of this clear and manageable therapy program consisting of 7 9 afternoon sessions. The treatment described in this manual can be conducted in an outpatient setting. Inpatient or day-care treatment is not necessary for most children with elimination disorders. This way, the children stay in their social environment and train their newly acquired skills at home. The group training is meant to motivate children and adolescents and to invigorate them for a new round of treatment. Additionally, new opportunities and perspectives can evolve. Thereby, children learn to take responsibility for their elimination disorders themselves and not to transfer it to their parents. Parents are informed and supported, but they

9 viii Preface are not the main recipients of the treatment. They do learn, however, to return the commitment and responsibility needed for therapeutic success to their children. Many different components are combined in the group training, e. g., provision of information, psychoeducation, relaxation and body perception techniques, changing dysfunctional cognitions, and other elements of cognitive behavioral therapy. Therefore, it is far more than a mere training. The group format offers considerable advantages. Children learn that problems with incontinence are more common than they have thought. They see other children as also being affected by incontinence or as suffering from even more severe disorders. They learn to modify their own subjective views. They develop new coping strategies together with the other children in the group training. To avoid feelings of shame and embarrassment, the groups should be homogeneous regarding age and gender. Some of the training components have been adapted to the treatment of adolescents. If group training is not possible due to organizational or other reasons, the components can be offered in individual sessions as well. In individual treatment, a selection of components of the training can suffice. This manual has been developed over the course of many years at the specialized outpatient department for elimination disorders at Saarland University Hospital, Germany (Department of Child and Adolescent Psychiatry and Psychotherapy). Heike Sambach, a pediatric nurse and urotherapist, became aware of the need for special group training for children with therapy resistance. With great innovation, passion to experiment, and dedication she laid the foundation for this manual. In mutual cooperation, our group of authors further developed and completed the manual, which is therefore the result of creative teamwork. The manual is aimed at pediatricians, specialists of child and adolescent psychiatry, psychologists, nurses, urotherapists, and all other professionals treating children and adolescents with elimination disorders. The training program was designed to be of fun for the children (as well as the therapists). It should, therefore, be carried out in a relaxed and humorous way. The components of this manual are designed to be appealing and attractive for children and adolescents. We would like to express our gratitude to all the children, adolescents, and parents who gave us many insights over the years and still do so every day. We wish to thank the editors of the Hogrefe publishing company, who responded very positively to our proposal of creating this manual and have assisted us throughout the whole process. Our thanks also go to Dr. Manfred Vogtmeier, Ms. Alice Velivassis, Mr. Robert Dimbleby, Ms. Juliane Munson, and our translator Octavia Harrison. We would be very pleased if our approaches were integrated extensively in all settings treating incontinent children and adolescents. June 2014 Monika Equit Heike Sambach Justine Niemczyk Alexander von Gontard

10 Introduction Nocturnal wetting (nocturnal enuresis), daytime wetting (functional urinary incontinence), and fecal incontinence (encopresis) are categorized as elimination disorders. Elimination disorders are heterogeneous in their clinical signs and symptoms, i. e., many different kinds and subtypes can be distinguished. They are also heterogeneous with regard to their etiology. On the one hand, genetic factors can predominate (as in nocturnal enuresis). On the other hand, environmental factors can be more important (as in voiding postponement). And finally, they differ regarding type of treatment in order to be effective, therapy has to be specific to each type of incontinence, which requires an exact diagnosis. In contrast to many other disorders in child and adolescent psychiatry and psychotherapy, elimination disorders can be treated quite effectively, resulting in high success rates. Most elimination disorders are functional in their pathogenesis, i. e., not caused by organic factors. Although psychological disorders can co-occur, the etiology of elimination disorders is not mainly psychogenic, as previously assumed, i. e., they are not due to intrapsychological or interpersonal conflicts and stressors. They are caused by a multivariate etiology with genetic dispositions, which are modulated by environmental factors. The aim of the treatment is always the achievement of continence, i. e., becoming completely dry or free from soiling. If children and adolescents become continent, there will be an improvement of psychological distress, self-esteem, and even behavioral symptoms. In order to attain this goal, simple but specific symptom-oriented treatment approaches are the most successful. These include counseling and components of cognitive behavioral therapy. When indicated, they can be combined with pharmacotherapy. Neither surgical interventions nor longterm psychotherapy are needed in most cases. Another advantage is that in almost all cases outpatient therapy is possible inpatient or day-care treatments are usually not necessary. According to our experience, they are needed only in exceptional cases and are mostly indicated by comorbid psychological disorders but not by elimination disorders themselves. In summary, with exact diagnosis and specific therapy most incontinent children and adolescents can be treated well in an individual outpatient setting combined with parental counseling. Elimination disorders treated that way can be considered simple disorders. Standard treatments for these uncomplicated disorders are described in detail in von Gontard and Nevéus (2006) and in von Gontard (2012a, 2012b). At our specialized outpatient clinic, we can witness every day that incontinence can be treated successfully through short and specific interventions much to the relief of children and their parents. Unfortunately, in some children and adolescents treatment is not so successful. Despite optimal diagnosis and specific therapy, they will not respond to standard treatments. These are so-called complex elimination disorders. The program presented in this manual is aimed at children and adolescents who do not respond adequately to standard treatment. Besides therapy resistance, these complex elimination disorders are often characterized by comorbidities, i. e., they often coexist with other psychological disorders. These difficult-to-treat children and adolescents have often been neglected in the past because their treatment resistance sometimes leads to feelings of frustration and incompetence in therapists and doctors. Sometimes unnecessary and ineffective treatments, such as inpatient treatment, nonindicated medication, or a pause in therapy are suggested. This manual makes new therapy options available. It presents new topics and introduces a group for-

11 2 Introduction mat for therapy. The group setting gives children the opportunity to a step out of their isolation and to share their experiences with others. The following structure was chosen for this manual: The first part gives a short overview of the current state of research on elimination disorders. For even more detailed information, readers are referred to the literature on standard therapy (von Gontard & Nevéus, 2006; von Gontard, 2012a, 2012b). The second part is dedicated to the description of the group therapy itself. Following general information on indication and procedures, every session is described in detail in a practical and clinically relevant way. There are 7 bladder training sessions for children with enuresis and urinary incontinence and 2 additional bowel training sessions for children with fecal incontinence (encopresis) and/ or constipation. The materials for the group therapy can be printed out (see Appendix).

12 1 Theoretical Background

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14 Chapter 1 Incontinence During Childhood and Adolescence 1.1 Nocturnal Enuresis Definition and Classification According to both classification systems ICD-10 (WHO, 1993) and DSM-5 (APA, 2013), enuresis is defined as an involuntary voiding of urine in inappropriate places from the age of 5 years onwards after ruling out organic causes. According to the diagnostic criteria of ICD-10, wetting occurs at least either twice a month (age 5 7) or once a month (age > 7) for at least 3 consecutive months. According to DSM-5, wetting occurs twice a week or leads to social incapacitation for at least 3 consecutive months. According to the classification of the International Children s Continence Society (ICCS), which is the gold standard in national and international research, enuresis (or nocturnal enuresis) is defined as any kind of wetting in discrete amounts while asleep (i. e., also during daytime naps) independent of possible comorbid symptoms or assumed causes (Austin et al., 2014; Nevéus et al., 2006). A minimum age of 5 years, a duration of 3 months, and a frequency of once per month is also required (Austin et al., 2014) Subtypes Nocturnal enuresis can be divided into different subtypes (Austin et al., 2014; Nevéus et al., 2006). See Table 1. Primary nocturnal enuresis (PNE) denotes nocturnal incontinence in children who have never been dry for more than 6 months. Two subtypes can be differentiated: 1. Primary monosymptomatic nocturnal enuresis (PMNE) refers to nocturnal incontinence without a dry interval longer than 6 months and no lower urinary tract symptoms, e. g., daytime incontinence, urgency, voiding postponement, or interrupted flow (see Section 1.2). Children with this type of nocturnal enuresis often wet large amounts of urine and are very difficult to wake up. During the day, no lower urinary Table 1 Subtypes of nocturnal enuresis (according to von Gontard & Nevéus, 2006) No signs of bladder dysfunction during daytime Signs of bladder dysfunction during the day present* Maximum dry interval < 6 months Primary nocturnal enuresis (PNE) Primary monosymptomatic nocturnal enuresis (PMNE) Primary non-monosymptomatic nocturnal enuresis (PNMNE) Maximum dry interval > 6 months Secondary nocturnal enuresis (SNE) Secondary monosymptomatic nocturnal enuresis (SMNE) Secondary non-monosymptomatic nocturnal enuresis (SNMNE) * Daytime incontinence, urgency, holding maneuvers, interrupted flow, etc.

15 6 Chapter 1 tract abnormalities exist. The micturition frequency is normal (4 7 times a day) and the amount of urine during daytime is appropriate for age. No urgency is present; the children do not show holding maneuvers, they can empty their bladder without any problems, and they do not soil. 2. Primary non-monosymptomatic nocturnal enuresis (PNMNE) refers to nocturnal incontinence without a dry interval longer than 6 months with disturbances of bladder function. For instance, these children can show urgency, voiding postponement, or interrupted flow. Children with secondary nocturnal enuresis wet during the night after a dry period of at least 6 months. Again, two subtypes are differentiated: 1. Secondary monosymptomatic nocturnal enuresis (SMNE) is defined as nocturnal incontinence after a dry period of at least 6 months without any signs of bladder dysfunction. 2. Secondary non-monosymptomatic nocturnal enuresis (SNMNE) describes nocturnal incontinence after a dry period of at least 6 months with signs of bladder dysfunction as in PNMNE. The differentiation between monosymptomatic and non-monosymptomatic is more relevant for treatment. Disturbances of bladder function have to be treated first. Treatment is the same in primary as in secondary types. However, children with secondary nocturnal enuresis have a higher risk for comorbid psychological disorders, which, if necessary, have to be treated in addition to the incontinence Prevalence Nocturnal enuresis occurs 2 3 more often than daytime urinary incontinence. The sex ratio is 1.5:1 to 2:1 (boys to girls). Depending on definition, prevalence rates are 43.2% in 3-year-old children and 20.2% in 4-year-old children. However, enuresis is not a formal diagnosis at this age (not until age 5 according to ICD-10, DSM-5, and ICCS). Of 5-year-old children, 15.7% are affected, of the 6-year-olds 13.1%. The prevalence rate decreases to 2.5% in children between 7 and 10 years of age. In adolescence, 1 2% still wet during the night and in adulthood %. Here the high rate of spontaneous remission of nocturnal enuresis of approximately 13% per year becomes apparent (Hellström, Hanson, Hansson, Hjälmås, & Jodal, 1990; von Gontard & Nevéus, 2006). According to the large epidemiological Avon Longitudinal Study of Parent and Children (ALSPAC, Golding, Pembrey, & Jones, 2001), at the age of 7 ½ years 15.5% (of 8,269 children) wet during the night (Butler, Golding, Northstone, & AL- SPAC Team, 2005). Most of these children wet approximately once a week (82.9%). According to DSM-IV, 2.6% fulfilled the criteria for nocturnal enuresis, thus wetted at least twice a week. In their study of 2,856 children with a mean age of 7.3 years, Sureshkumar and colleagues (2009) found a prevalence rate for nocturnal enuresis of 18.2%. Of these children, 12.6% had nocturnal enuresis with a frequency of 1 6 times per month, 3.6% of them wet every night. In an epidemiological study by two of the authors with 2,079 preschoolers (mean age of 6 years), a prevalence rate of 9.5% for nocturnal enuresis was found (Equit, Klein, Braun-Bither, Gräber, & von Gontard, 2013). Of these children, 2.7% wetted during the day at least once a month. In another population-based study of 1,391 6-year-old children, 13.4% showed daytime or nighttime wetting: 9.1% wetted at night and 4.4% during the day (von Gontard, Moritz, Thome-Granz, & Freitag, 2011). In general, PNE occurs more often than SNE, but until the age of 7, SNE appears as often as PNE (5.2%; Fergusson, Horwood, & Shannon, 1986). SNE occurs the most often at the age of 7 (5.1%). Further epidemiological studies show that monosymptomatic nocturnal enuresis (MNE) occurs twice as often (68.5%) as non-monosymptomatic nocturnal enuresis (NMNE, 31.5%; Butler, Heron, & ALSPAC Team, 2006) Differential Diagnoses and Comorbid Disorders Psychological Differential Diagnoses Many children wet during the night without any psychological disorder. If additional psychological disorders exist, they are classified separately.