Transition of Care for Long-Term Management of Hydrocephalus in Children

Rationale

Neurosurgical diseases are generally acute, but successful management frequently transforms them into chronic conditions. As pediatric neurosurgery tends to become an autonomous division, some neurosurgeons become exclusively pediatric, and the need for a transition from pediatric to adult care is felt more acutely. Although the need for prolonged follow-up of patients with hydrocephalus after they reach adulthood is clear, the literature on transition is scarce and no universal recipe exists. 

Obstacles to Smooth Transition

Transitioning a patient from care by a pediatric specialist to one dealing with adults can be difficult for many reasons.  These issues can be considered according to the following categories:

Patient-related

  • Poor compliance: Some young adult patients may be unwilling or unable to attend appointments.
  • Fatigue with condition: Many patients may show a weariness or lack of initiative in managing their condition and a rejection of the medical world.
  • Dependency: A long-term patient whose care has been managed throughout childhood may have developed an attitude of passivity and dependence (27). 

Surgeon-related

  • Self-declared incompetence: Many neurosurgeons specializing in the treatment of adults profess an inability to manage complex hydrocephalus cases.
  • Unwilling to assume care: Many neurosurgeons who treat adults only do not have an interest in managing patients with shunts.
  • Unawareness of follow-up need: Neurosurgeons not used to following shunted patients may not appreciate the need for long-term follow-up of these patients.

Healthcare system-related

  • Regulation: Hospital or governmental regulations may prevent pediatric practitioners from treating adults.
  • Inadequate reimbursement: Not uncommonly, fee structures do not adequately reimburse the practitioner for the time that is spent managing complex patients with hydrocephalus.
  • Lost records: Poor organization of medical records is not uncommon and can result in the loss of a patient’s previous medical history with all the implied hazards.

Benefits of Organized Child-to-Adult Transition

Healthcare system

  • Early recognition of shunt failure: When a problem with a shunt is identified early, before it creates injury to the patient, and when there is planning in anticipation of treatment failure, economic benefit results from the avoidance of costly complications, as has been shown for patients with spina bifida (26). 

Patient

  • Management of hydrocephalus: The recognition of hypodrainage, hyperdrainage, and asymptomatic shunt failure requires a neurosurgeon’s expertise.
  • Management of associated diseases and handicap: The neurosurgeon is frequently asked by other specialists about the impact of the shunt on abdominal surgery, pregnancy, and delivery. Thus, the referring neurosurgeon must have accurate knowledge and a proactive attitude.
  • Counseling on occupation or leisure activities (1): Most activities do not interfere with a shunt, and patients should be encouraged to engage in them. Sometimes the neurosurgeon’s weight is needed to counter an occupational medicine specialist’s reluctance.

Surgeon

  • Attraction of patients to practice: A growing number of patients maturing out of childhood are in search of competent caregivers.
  • Complete medical records: A smooth transition process will have, as an integral part, an updated patient record, thereby making management of the patient’s health much easier.
  • Ease of clinical research: Orderly follow-up and complete clinical records enable research on long-term outcome (1).

Method for Transition

  • No universal method: The techniques for management of child-to-adult transition of care will vary according to local custom and requirements. All depends on the local medical resources, healthcare financing, and above all, the patients’ and physicians’ motivation and willingness.
  • Need for awareness of need: A great deal of work remains to be done to increase awareness in the public and medical community of the need for child-to-adult transition of care.
  • Neurosurgeons must lead effort: Hydrocephalus is a neurosurgical disease, and neurosurgeons must assume leadership in defining the transitional process. 
  • Multidisciplinary effort ideal: Ideally, transition could be managed in a multidisciplinary clinic, based on the model of spina bifida clinics (21).

Models of Child-to-Adult Transition

Different models of child-to-adult transition can be drawn depending on local resources and organization of healthcare. 

  • No-transition model: In units taking care of both children and adults where the same physician continues to follow his or her patients regardless of age, no transition occurs.
  • Neurosurgeon-to-neurosurgeon model: When a child is cared for in a specialized pediatric unit, a time will come when the child’s age precludes continuing care by the pediatric specialist. In such a setting close collaboration with an adult unit should be maintained to allow for continued follow-up and management of complex hydrocephalus cases in adults. 
  • Patient-centered model: For patients who are intellectually competent to be educated about their condition, emphasis can be placed on helping them learn about their disease and its treatment. This process can take advantage of a patient’s concerns about the disease and stress the importance of learning to cope with it as part of becoming an adult. Such education should be anticipated and begun long before the patient reaches adulthood. 
  • Rehabilitation-centered mode: For patients who are severely limited cognitively, the management provided by different specialists (neurologist, urologist, orthopedist, etc.) is best centralized under the direction of rehabilitation physicians. This arrangement takes advantage of the ingrained culture of interdisciplinary management among rehabilitation specialists. 

Transition File of the Patient with Hydrocephalus

Preparation of the transition file (in digital form whenever possible) is the neurosurgeon’s responsibility. It should be immediately available for all patients and include the following:

  • Medical history: A summary of the medical history, including cause of hydrocephalus and previous operations should be included.
  • Details of current shunt: The operative note of a detailed description of the last shunt operation should be included. There should be a description of the type of shunt (with the setting on any programmable valve).
  • Baseline imaging: Images should be included that show the size of the patient’s ventricles when the hydrocephalus treatment has been optimized.
  • Latex allergy: The patient’s status regarding latex allergy should be noted.
  • Pediatric neurosurgeon’s contact information: Complete contact information must be supplied.
  • Other: Any additional information that is relevant for any eventual operation(s) should be included.