Role of primary care for individuals with childhood-onset neurologic conditions

Abstract

Background

Individuals with childhood-onset neurologic conditions often face challenges in the pediatric-to-adult health care transition (HCT). Furthermore, the importance of implementing primary care is unrecognized. We investigated the situation of adults with childhood-onset neurologic conditions from the perspective of health care professionals (HCPs) in community- and hospital-based primary care practice.

Design and methods

Overall, 1334 HCPs in medical facilities across Tokyo (mainly in Kita, Nerima, and Itabashi Cities) were surveyed regarding their experience caring for adults with childhood-onset neurologic conditions. Snowball sampling was also deployed to enhance the input from various health professions. The questionnaire included quick response codes linked to web-based questionnaires identical to paper-based ones, enabling additional HCPs to answer the questionnaire. The survey included questions about the care provided by HCPs, the perceived challenges and worthwhileness of the care, and their views on HCT.

Results

We collected 276 responses (response rate, 20.7%): 224 by mail and 52 online. In total, 94 HCPs of the respondents (75 doctors, 11 nurses, 5 therapists, 2 care workers, and 1 medical social worker) involved in caring for this population were analyzed. Doctors and nurses managed medical devices, educated patients, and provided consultation and care. Doctors cited the management of comorbidities outside of their expertise and difficulties securing hospitalization during emergencies as barriers to care. HCPs found the valuable opportunities to enrich their clinical experience and long-term relationships with patients worthwhile. HCPs expressed the need for systems that guarantee patient hospitalization and multidisciplinary conferences between HCPs and specialists.

Conclusion

We described the roles of HCPs in community- and hospital-based primary care, which are vital components of HCT for adults with childhood-onset neurologic conditions. Their practice includes multidisciplinary involvement, patient education, and care coordination. For better HCT in this population, efforts are required to enhance HCPs’ capability to respond to patients with disabilities, patients’ multiple comorbidities, and families’ needs.

Practice implications

Further efforts to deepen community-based care are desired to improve HCT for people with childhood-onset neurologic conditions.