El paradigma actual del reloj: bucles entrelazados retroalimentados

Several pilot programs to facilitate self-management skills, physical activ-ity and communactiv-ity participation, and transfer of care to adult services were described. Multiple modalities including a lifespan approach, camp training programs, teleconferencing, and internet-based tools have been tried.

A program from the Spina Bifida Association in Cincinnati uses an “effective mentoring model” via nine weekly one-hour teleconferences with 10 to 12 participants. A syllabus that addresses self-care topics and negotiating the health care system has been developed, and includes guest moderators with expertise in Spina Bifida. The program has served 99 older adolescents and young adults of diverse backgrounds, but with an emphasis on those who are geographically isolated or financially challenged [14].

The Shriners Hospital in Chicago presented their first SPINABILITY Camp, which is designed for participants at least 13 years of age with independent transfer and bowel and bladder self-care abilities. The camp lasts one week and is staffed by an interdisciplinary team that utilizes a “challenge by choice” philosophy, meaning that campers participate at the level of their choice for each sports-oriented physical activity. The inaugural camp was well received and will be repeated [15].

Several presentations outlined the successes and challenges of regional transition programs, including those in Alabama, Illinois, Wisconsin, and Ontario, Canada. Important features of these programs believed to facilitate successful transition include a lifespan approach with specific training and mentorship for the child/adolescent; collaboration among pediatric and adult healthcare providers; family education and support; and dedicated transition coordinators to set developmentally appropriate goals, and to manage scheduling, transportation, as well as the transfer of health infor-mation from one team to the other. These pilot programs identified gynecol-ogy, family planning, bowel continence programs, adult surgical specialists, and quality health insurance as the greatest needs for an adult Spina Bifida clinic [16-19].

Gillette Lifetime Specialty Healthcare summarized five years of experiences with their adolescent and adult clinic, which uses an interdisciplinary team of urological, rehabilitation, and neurosurgical specialists to address the cog-nitive, socio-emotional and physical needs of their patients. The ages of their

clientele range from 16 to 74 years, with equal participation of males and females. They reported high patient satisfaction based on customer satisfac-tion surveys. Parents and youth prioritized different areas. Teens chose Medi-cal and Jobs as first priorities and parents chose Insurance and MediMedi-cal [20].

A state government funded program from New South Wales, Australia utilizes a case management system to help young adults negotiate the more complex adult health care system. A Clinical Nurse Consultant and an Oc-cupational Therapist who coordinate transitions from the three pediatric multidisciplinary Spina Bifida clinics to the two adult Spina Bifida clinics or to regional adult rehabilitation service providers staff the Adult Outreach Service. The transition service has facilitated regular attendance at the adult Spina Bifida clinic, decreased hospitalizations for pressure sores, reduced the incidence of renal impairment, and increased community participation [21].

Several transition tools are being developed. The Center for Disease Control and Prevention is developing a Preparation for Adult Participation logic model based on the principals of the World Health Organization Interna-tional Classification of Function and using input from Spina Bifida experts and consumers. The transition pathway has three domains: 1) Self-manage-ment/Health, 2) Personal and Social Relationships, and 3) Employment/

Income Support. A web-based Transition Preparation Checklist will list key developmental milestones in each of these domains and offer patient educa-tional materials and assessment tools [22].

Another assessment tool, Assessment of Spina Bifida Care for Adolescents and Youth, was piloted by six Spina Bifida clinics in New York, New Hamp-shire, North Carolina, Ohio, and Pennsylvania. This health-care team self-assessment tool is adapted from a validated quality improvement measure from the Institute for Healthcare Improvement and is based on the Chronic Illness Care Model. Completed by medical directors, nurse coordinators, al-lied health professionals, and surgical sub-specialists, this pilot study found no significant differences in ratings across centers or provider types. The mean overall grade for the five centers was a “C” [23].

An Internet-based, interactive care coordination tool, which includes a video-format curriculum, has been piloted by SUNY Upstate Medical University. The content of this website, www.HealthyTransitionsNY.org, is adapted from the University of Washington Adolescent Health Transition Project; the curriculum was prioritized by consumer focus groups. Several ADA-accessible formats are available, which can be used for self-study or by using a moderator guide. The website includes a transition readiness check-list, goal setting guides, a search engine, health care guidelines, a transition medical history form, and an interactive video that demonstrates health care encounters [24].

Overall, the transition presentations highlighted common issues across all Spina Bifida providers. Interestingly, challenges in access to adult provid-ers were similar regardless of the health care system. Young adults are still dependent on parents for management of their medical condition, particu-larly for administrative tasks such as appointments, finances, and medica-tion refills. Community participamedica-tion remains low but can be facilitated by a transition coordinator. Multiple tools are being developed to help with the assessment, coordination, and patient/family education during the transi-tion process. More research is needed in understanding how to maximize de-velopment of self-management independence and community participation.

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