Table 6.
Experience of discussion with patients about health care transition and facilitators of transition in community- and hospital-based primary care from health care professionals’ perspectives.
| Variables |
n (%) |
||||||
|---|---|---|---|---|---|---|---|
| Doctors |
Nurses (n = 11) |
Therapists (n = 5) |
Care worker (n = 2) |
Medical social worker (n = 1) | |||
| Clinics (n = 62) | Hospitals (n = 12) | Medical daycare (n = 1) | |||||
| Experience of discussions with patients about HCT | 21 (33.9) | 6 (50.0) | 1 | 8 (72.7) | 5 (100) | 1 (50) | 1 |
| Topics discussed with patients and families regarding transition | |||||||
| Whether the patient should undergo HCT or not | 12 (57.1) | 5 (83.3) | 0 | 4 (50.0) | 2 (40) | 0 | 0 |
| Difficulty in finding adult practitioners who accept patients undergoing HCT | 11 (52.4) | 6 (100) | 1 | 7 (87.5) | 3 (60) | 1 (50) | 1 |
| Benefits/challenges of HCT | 8 (38.1) | 4 (66.7) | 1 | 5 (62.5) | 4 (80) | 1 (50) | 1 |
| Facilitators of HCT in community- and hospital-based primary care from HCPs' perspectives | |||||||
| What HCPs find rewarding in caring for patients with childhood-onset neurologic conditions | |||||||
| Experience opportunities with a variety of disease cases including rare diseases | 35 (56.5) | 6 (50) | 0 | 7 (63.6) | 5 (100) | 2 (100) | 1 |
| Patients with childhood-onset neurologic conditions often have disabilities, and contact with people with disabilities broadens medical professionals' perspectives | 33 (53.2) | 3 (25) | 0 | 5 (45.5) | 5 (100) | 2 (100) | 1 |
| Engagement with patients on a long-term basis | 27 (43.5) | 5 (41.7) | 0 | 9 (81.8) | 5 (100) | 1 (50) | 1 |
| Be able to develop expertise in social welfare systems | 24 (38.7) | 5 (41.7) | 0 | 5 (45.5) | 4 (80) | 2 (100) | 1 |
| Preferred types of transition from pediatrics to adult health care | |||||||
| Transition to adult care after a certain period of concurrent pediatric and adult care | 40 (64.5) | 9 (75) | 0 | 9 (81.8) | 3 (60) | 2 (100) | 0 |
| Pediatrician as the physician in charge and specialized adult departments as needed | 30 (48.4) | 4 (33.3) | 0 | 6 (54.5) | 4 (80) | 2 (100) | 1 |
| Continuation of pediatric care without HCT | 20 (32.3) | 1 (8.3) | 0 | 2 (18.2) | 2 (40) | 1 (50) | 0 |
| Transfer to adult care as soon as the patient reaches 18 years old | 12 (19.4) | 1 (8.3) | 1 | 1 (9.1) | 0 | 1 (50) | 0 |
| Desired systems for the care of adults with childhood-onset neurologic conditions in community- and hospital-based primary care | |||||||
| Facilities for emergency hospitalization | 48 (77.4) | 10 (88.3) | 0 | 9 (81.8) | 4 (80) | 2 (100) | 1 |
| Sharing patients’ medical information | 36 (58.1) | 3 (25.0) | 1 | 5 (45.5) | 5 (100) | 1 (50) | 0 |
| Specialists to respond to inquiries from primary care doctors | 32 (51.6) | 7 (58.3) | 0 | 6 (54.5) | 2 (40) | 1 (50) | 0 |
| Multidisciplinary conference | 16 (25.8) | 4 (33.3) | 0 | 8 (72.7) | 4 (80) | 2 (100) | 0 |
| Management fee | 16 (25.8) | 5 (41.7) | 0 | 6 (54.5) | 1 (20) | 0 | 0 |
Regarding experience of discussion with patients about HCT and facilitators of HCT in the community-based care, participants were asked to answer each item on a 5-point Likert scale (1 = strongly disagree to 5 = strongly agree). “Strongly agree” and “agree” were dichotomized as “yes.” HCP: health care professional, HCT: health care transition.