Background According to the National Survey of Children with Special Health Care Needs, 16.6 percent of New Hampshire’s children and youth have special health care needs.[1] Youth with special health care needs (YSHCN) are those who “have or are at increased risk for chronic physical, developmental, behavioral, or emotional conditions and who also require health and related services of a type or amount beyond that required by children generally”[2]. Many of these youth will require support and services in their transition to adulthood.
Health care transition, the process of change from child- and family-centered health care to adult care requires ongoing attention and planning, especially for these youth. The goal is “to maximize lifelong functioning and potential through the provision of high-quality, developmentally appropriate health care services that continue uninterrupted as the individual moves from adolescence to adulthood.[3]
Since 2004, Special Medical Services (SMS) of New Hampshire’s Department of Health and Human Services has been educating families, youth and providers about health care transition through a variety of activities. They include direct support to pediatric practices, an on-line survey of pediatricians, parent-youth conferences, literature and an ongoing Health Care Transition Coalition.
SMS determined that the next step was to reach out to adult providers to identify unmet transition needs of youth and to identify current practices and beliefs. This was accomplished by a survey sent to several groups of adult primary care providers between October 2007 and February 2008. The survey yielded 180 responses, primarily from family physicians. (See Methods)
Results/Highlights
PROVIDER COMFORT LEVEL
Respondents were most comfortable treating youth/young adults with asthma (92%), hypertension (89%), intellectual disabilities (75%), mental health conditions (57%) and diabetes (54%). They were less comfortable treating youth/young adults with conditions such as cystic fibrosis (15%), chromosomal/metabolic disorders (14%), autism (22%) and those who are technology dependent (11%). (Figure 1)
COMMUNICATION AND COORDINATION
¨ 46% of adult providers rarely or never communicated with the previous health care provider. (Figure 2)
¨ 57% of adult providers rarely or never received a written transfer summary from the previous provider. (Figure 3)
¨ 48% of adult providers thought that youth/young adults entering their practices had experienced a gap between pediatric and adult care. (Figure 4)
BARRIERS TO CARING FOR YSHCN
Lack of time, inadequate staffing, reimbursement issues and inadequate support from knowledgeable specialists were sometimes perceived as barriers. (Figure 5)
| WHAT WOULD HELP ADULT PROVIDERS?
¨ 95% would like a written transfer summary.
¨ 95% would like support from specialists.
¨ 84% wanted written information about a particular condition.
¨ 91% want to have conversation about the YSHCN with the prior health care provider. (Figure 6)
ADDITIONAL FINDINGS
¨ 18-25 year olds comprise less than 10% of the patient population in 80% of the respondent’s practices. Of this 10%, less than 5% were thought to have special health care needs.
¨ 78% of the respondents indicated that the transfer of care to adult providers should occur between 18 and 21 years.
Implications/Recommendations
The results indicate a lack of coordination and communication regarding the transition and transfer of care of youth with special health care needs. This can lead to gaps in medical care for a population that needs uninterrupted care.
To help smooth the transition, SMS promotes the use of a written medical summary that can be utilized to highlight critical medical information for the youth and can be sent to the new provider prior to the first visit. SMS also supports the use of the Transition Checklist and Timeline, or similar guide, to promote a systematic planning process for providers, families and youth/young adults.
Another important finding is that many respondents were either not comfortable or only somewhat comfortable treating certain low incidence or complex conditions. Adult providers need to have the knowledge and skills to serve these populations. SMS recommends that stakeholders, including consumers and relevant professional organizations, review these findings and develop educational programs and access to resources for physicians, medical students and other primary care providers to ensure that youth with special health care needs receive appropriate primary and specialty care.
[1] UD DHHS, Health Resource and Services Administration, MCH. The National Survey or Children with Special Health Care Needs Chart-book 05-06 Rockville MD; US DHHS 07
[1] Maternal and Child Health Bureau; US DHHS
[1]American Academy of Pediatrics, Family Physicians and ACP American Society of Internal Medicine A Consensus Statement of Health Care Transition of Young Adults with Special Health Care Needs. Pediatrics 2002;l110; 1304-1306
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