When managing the transition of a person from paediatric services to adult services for ongoing care of neurogenic lower urinary tract dysfunction:

  • formulate a clear structured care pathway at an early stage and involve the person and/or their parents and carers
  • involve the young person’s parents and carers when preparing transfer documentation with the young person’s consent
  • provide a full summary of the person’s clinical history, investigation results and details of treatments for the person and receiving clinician
  • integrate information from the multidisciplinary health team into the transfer documentation
  • identify and plan the urological services that will need to be continued after the transition of care
  • formally transfer care to a named individual(s).

When receiving a person from paediatric services to adult services for ongoing care of neurogenic lower urinary tract dysfunction:

  • review the transfer documentation and liaise with the other adult services involved in ongoing care (for example, adult neuro-rehabilitation services)
  • provide the person with details of the service to which care is being transferred, including contact details of key personnel, such as the urologist and specialist nurses
  • ensure that urological services are being provided after transition to adult services.

Consider establishing regular multidisciplinary team meetings for paediatric and adult specialists to discuss the management of neurogenic lower urinary tract dysfunction in children and young people during the years leading up to transition and after entering adult services.

Relative value placed on the outcomes consideredPatient and parent/carer experiences of the transition process from paediatric to adult services were considered to be important in themselves and particularly important in establishing positive engagement with the adult care team. The risks of failed transition arrangements were considered to be serious as they include disengagement with continuing care which could affect quality of life and lead to serious morbidity from renal impairment, incontinence, urinary tract infections or readmissions to hospital.
Quality of evidenceThe evidence was assessed as low to high quality. The methodology of these studies was felt to be appropriate in the context of the clinical question.
Evidence was limited to observational studies of patient and carer experience.
However, given the nature of the question, the evidence was felt to be valuable in informing discussion.
Although many of the studies included a non-neurological population the GDG considered the studies to contain relevant information that is applicable to a neurological population. The GDG noted that only one of the studies provided information from a UK population.
Six studies 257, Osterlund261, Fiorentino263, Reiss264, Stewart265, Young266) provided information on the patient experience outcome as specified in the protocol, but none of the other outcomes were covered by the studies included in the review.
Three studies that quantitatively assessed a family-centred or ‘medical home approach’ (Lotstein258, Duke 259, Scal 260) demonstrated that a high level of family involvement led to a greater likelihood of obtaining support and guidance in the transfer of care which may result in a more positive patient experience. These studies all used high quality nationally collected data and were assessed as having used appropriate analytical techniques.
Five qualitative studies (Osterlund261, Fiorentino263, Reiss264, Stewart265, Young266) considered the perceptions of current transition services. The participants were a mixture of patients, family members and health care providers. The studies reported examples of poor communication amongst health professionals and inadequate patient record keeping. Patients reported that transfer was often sudden with little warning or information and inadequate communication between paediatric and adult services. The GDG recognised that the findings of these studies provide a limited insight into the issues that can impact on the success of the process of transferring care between different services. However, the issues raised were felt to chime with some of the experiences of GDG members.
Trade-off between clinical benefits and harmsMore structured, proactive, transition processes are very unlikely to cause clinical harm but may be of substantial benefit.
Economic considerationsNo evidence is available that addresses the issue of cost-effectiveness of transition services. The GDG recognised that there are costs involved in establishing a transition service. However the GDG also recognised that the savings may fall out of better continuity of care (e.g. savings from fewer later complications, from patient’s disengagement from care).
Other considerationsThe transfer of urological care from paediatric to adult services has to be undertaken in the context of the overall transfer of care of the underlying neurological condition. A number of patients with neuropathic urinary tract disorders will have multiple and complex associated needs.
The GDG recognised that there are particular skills (such as adolescent health expertise, multi-agency working, communication counselling) required in the effective management of young people.
The transition process is recognised to include the involvement of parents and carers as well as patients. For example, providing parents with information to allow them to support their child’s transition into adulthood may be of value.

From: 16, Access to and interaction with services

Cover of Urinary Incontinence in Neurological Disease
Urinary Incontinence in Neurological Disease: Management of Lower Urinary Tract Dysfunction in Neurological Disease.
NICE Clinical Guidelines, No. 148.
National Clinical Guideline Centre (UK).
Copyright © 2012, National Clinical Guideline Centre.

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