title: Psychosocial screening at paediatric BEEC clinics: a pilot evaluation study.
abstract: BACKGROUND
  Bladder Exstrophy and Epispadias Complex (BEEC) is associated with an increased risk of impaired mental health, quality of life, and psychosocial functioning. Therefore, screening patients to help identify and evaluate potential psychosocial difficulty is arguably an important consideration for BEEC Services.
  
  
  OBJECTIVE
  To screen paediatric BEEC patients for a range of general psychosocial difficulties in a multi-disciplinary out-patient clinic setting.
  
  
  METHODS
  This cross-sectional evaluation was conducted between April 2012 and July 2013. Families attending BEEC multi-disciplinary out-patient clinics were asked to complete a range of standardised psychosocial questionnaires, including the Paediatric Quality of Life Inventory (PedsQL 4.0 Generic Core and Family Impact Module), the Strengths and Difficulties Questionnaire (SDQ), the Paediatric Index of Emotional Distress (PI-ED), and the Hospital Anxiety and Depression Scale (HADS). 108 children attended clinic of which 80 (74.1%) patients and their parents/carers completed some or all of the questionnaires. The mean patient age was 8.41 years (SD = 4.46, range = 1-18 years). There were more boys (N = 50, 62.5%) and the majority had a diagnosis of classic bladder exstrophy (N = 51, 63.8%), followed by primary epispadias (N = 22, 27.5%) and cloacal exstrophy (N = 7, 8.7%).
  
  
  RESULTS
  Mean total scores fell within the average/normal range on all questionnaires used (See table below). However, variation around these means was high. Age, gender and diagnosis were found to significantly influence certain questionnaire responses with older-age groups, males, and those with classic bladder exstrophy particularly at risk across some domains. The children/adolescents self-reported better health related quality of life (HRQoL) scores than published results for a range of paediatric chronic health conditions. Differences between parent and child responses on both the PedsQL and SDQ favoured a more positive response on the child self-report questionnaire but were not statistically significant.
  
  
  CONCLUSIONS
  Mean scores on the measures used suggest a relatively optimistic picture of general psychosocial well-being, especially for HRQoL, in the BEEC population studied. Positive HRQoL outcomes have recently been reported for BEEC paediatric populations. Our results reflect this trend with better mean HRQoL scores than paediatric patients with a range of other chronic health conditions. However, this optimism is cautious given the limitations of this evaluation study and the high variation around the means. Limitations included the small sample size (especially for patients with cloacal exstrophy), the lack of a control group, the limited sensitivity of generic questionnaires in respect of BEEC-specific issues, and the low mean age of patients in the study. Future screening programmes may wish to consider measuring BEEC-specific variables (e.g. satisfaction with genital appearance/function); collecting information on medical aspects, such as continence, pubertal stage and frequency/timing of medical intervention; and asking both parents/carers (where possible) to complete the questionnaires.
  
  
  CONCLUSIONS
  Screening questionnaire responses were used in conjunction with clinical psychology consultations to evaluate a range of psychosocial aspects in BEEC paediatric patients. Whilst mean scores on the measures used suggest a relatively optimistic picture, certain individual scores did fall within the clinical ranges, highlighting the potential need for further assessment. Developmentally tailored consultations with a clinical psychologist can provide detailed information around questionnaire responses and further assess BEEC specific aspects.
authors: Paediatric Psychosocial Service, Royal Manchester Children's Hospital, Manchester, UK; Bladder Exstrophy Service, Department of Urology, Royal Manchester Children's Hospital, Manchester, UK. Electronic address: ruth.hurrell@cmft.nhs.uk.
authors: Ruth A
authors: RA
authors: Hurrell
authors: Institute of Population Health, Faculty of Medical and Human Sciences, University of Manchester, UK; Manchester Biomedical Research Centre, Central Manchester University Hospitals NHS Foundation Trust, Manchester, UK.
authors: Catherine
authors: C
authors: Fullwood
authors: Paediatric Psychosocial Service, Royal Manchester Children's Hospital, Manchester, UK; Bladder Exstrophy Service, Department of Urology, Royal Manchester Children's Hospital, Manchester, UK.
authors: Joni
authors: J
authors: Keys
authors: Bladder Exstrophy Service, Department of Urology, Royal Manchester Children's Hospital, Manchester, UK.
authors: Alan P
authors: AP
authors: Dickson
authors: Bladder Exstrophy Service, Department of Urology, Royal Manchester Children's Hospital, Manchester, UK.
authors: Janet
authors: J
authors: Fishwick
authors: Bladder Exstrophy Service, Department of Urology, Royal Manchester Children's Hospital, Manchester, UK.
authors: Beverley
authors: B
authors: Whitnall
authors: Bladder Exstrophy Service, Department of Urology, Royal Manchester Children's Hospital, Manchester, UK.
authors: Raimondo M
authors: RM
authors: Cervellione
mesh_terms: D000554:Ambulatory Care Facilities / Q000458:organization & administration*; D001746:Bladder Exstrophy / Q000503:physiopathology / Q000523:psychology* / Q000628:therapy; D002648:Child; D002657:Child Development / Q000502:physiology; D002675:Child, Preschool; D003430:Cross-Sectional Studies; D004842:Epispadias / Q000503:physiopathology / Q000523:psychology* / Q000628:therapy; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D015994:Incidence; D007223:Infant; D008297:Male; D008403:Mass Screening / Q000379:methods; D001523:Mental Disorders / Q000175:diagnosis* / Q000453:epidemiology; D008603:Mental Health; D008991:Monitoring, Physiologic / Q000379:methods*; D009483:Neuropsychological Tests; D010045:Outpatients / Q000706:statistics & numerical data; D010865:Pilot Projects; D011584:Psychology; D011788:Quality of Life; D018570:Risk Assessment; D011795:Surveys and Questionnaires; D006113:United Kingdom
keywords: Anxiety; Bladder exstrophy; Depression; Psychosocial questionnaires; Quality of life