Transition of Care to An Adult Spina Bifida Clinic: Patient Perspectives and Medical Outcomes

Saturday, October 2, 2010: 4:11 PM
Yerba Buena Salon 9 (San Francisco Marriott Marquis)
Ashley R. Cox, Urology, Resident1, Lynn M. Breau, Ph.D2, Liette Connor3, P.D. McNeely4, Peter A. Anderson1 and Dawn L. MacLellan1, (1)Urology, Dalhousie University, Halifax, NS, Canada, (2)School of Nursing, Dalhousie University, Halifax, NS, Canada, (3)Urology, Capital Health District Authority, Halifax, NS, Canada, (4)Division of Neurosurgery, Dalhousie University, Halifax, NS, Canada

Purpose More than 70% of children born with a myelomeningocele will survive into adulthood. These patients continue to have complicated urological and neurosurgical issues. Transition of care to adult centres from well-established multidisciplinary clinics at pediatric centres may pose a challenge for patients, their parents and healthcare professionals. The objectives of this study were: 1) to seek patient and parent perspectives on the transition of care from the pediatric spina bifida (SB) clinic to an adult centre 2) to correlate these perspectives to urological and neurosurgical outcomes for patients with SB and 3) to identify barriers to a successful transition of care in this patient population. 

Methods Patients (and/or their parents) who attend the adult SB clinic at our institution were invited to complete 3 surveys by telephone including: the Medical Outcomes 36-item Short Form Health Survey (SF-36), the Ambulatory Care Experience Survey (ACES) and a Transition of Care Survey.  Urological and neurosurgical outcomes were reviewed and correlated with patient and parent perspectives. Statistical analysis was performed using SPSS version 16.0.  Preliminary results were tabulated.

Results Twenty of 94 adult SB patients agreed to participate in the study (11 male, 9 female). Surveys were completed by 15 patients and by five parents. The average age of respondent was 32 years old (range 19-66). Forty-five percent had a post-secondary education and 30% were employed. The majority of respondents were wheelchair bound (n=14) and lived with their parents (n=12).  Most respondents felt their health was ‘good’ (40%) or ‘very good’ (26.7%) while no respondent felt their health was ‘excellent’. Seventy-three percent felt their physical health limited their work and social activities, and prevented them from reaching goals at least ‘a little of the time’.  The adult SB caregivers were felt to listen (80%), have adequate knowledge of the patient’s medical history (73%) and provide clear detail and instructions to patients (73%).  Seventy-three percent felt ready to leave a pediatric centre, but 60% would have preferred a more gradual transition of care. Fifty-six percent wanted to make more decisions surrounding their care.  The pediatric SB clinic was given an overall rating of 9.18/10 (± 1.328 SD), while the adult SB clinic received a rating of 7.35/10 (± 1.973 SD).  Correlation of patient perspective and medical outcomes are currently being investigated.

Conclusion Despite positive trends in survey responses from patients and caregivers, the adult SB clinic was rated lower than the pediatric SB clinic. Transitioning SB patients from pediatric care to adult care poses challenges for the healthcare system. To optimize the transition process it is imperative to assess the barriers to this process as seen by the patient, their parents and healthcare professionals.