1. Caring for Children with Medical Complexity
A Survey of Community Pediatricians
Emily S. Copeland 1,2, MD: Jill Ann Jarrell 1,2, MD, MPH
1Baylor College of Medicine; 2 Texas Children’s Hospital
Introduction
According to the National Survey for Children with Special Health Care Needs data, children with special health care needs (CSHCN) are a significant and growing population, accounting for over 14 million children in the United States. The federal Maternal and Child Health Bureau define CSHNC as those who have an increased risk for a chronic condition and who require health services beyond that required by the general population of children. CSHCN currently account for half of all pediatric health care costs. Children with medical complexity (CMC) are a subgroup of CSHCN who are deemed medically fragile, with chronic or acquired disease and functional impairment.
While primary care of CMC is a growing field, there are an insufficient number of specialized clinics to adequately care for this growing population, putting the responsibility on subspecialists or community pediatricians. These children and their families require health-care providers who are trained and knowledgeable in areas that specifically affect CMC including tracheostomy care, gastrostomy tube care, airway clearance, feeding intolerance, care coordination and evaluation of numerous psychosocial factors; all in addition to typical pediatric health maintenance. The literature provides little guidance for community pediatricians in successfully incorporating CMC into their busy practices. This necessitates that community pediatricians have formal education and training as well as a working knowledge in caring for CMC and CSHCN.
Objective
The objective of this study is to evaluate community pediatricians’ competency in caring for CMC through self-assessment and identification of perceived barriers to care.
Methods
The data for this evaluation was extracted from a survey on children with complex medical needs created on Survey Monkey. The survey was modeled after a previous study that examined resident exposure to Palliative Care by assessing four specific categories of training and education – formal training (workshops, lectures, conferences or continuing education), personal experience (direct patient care), personal fund of knowledge and emotional comfort. These four categories were assessed in regards to managing 12 common ambulatory problems for CMC on a scale of 1 to 5 (none to exceptional). These 12 common ambulatory problems were compiled based on expert opinion from faculty at Texas Children’s Hospital (TCH) Special Needs Clinic (SNC) and through literature review. The patient population at the TCH SNC is technology-dependent, medically fragile or actively followed by 3 or more specialists.
Additionally, the survey included open-ended questions focused on the community pediatricians’ attitudes regarding the responsibility for caring for CMC and perceived barriers to their care. The voluntary survey was ed to 228 community pediatricians employed at 53 different Texas Children’s Pediatrics outpatient clinics located through out the greater Houston area.
Quotes from Community Pediatricians
“These kids come with a lot of paperwork and that is hours of unpaid time when I could be seeing several other patients.”
“Not only do special needs patients take a lot of time in exam rooms, they also require a lot of time for completion of letters of medical necessity… The nursing staff in our office does not understand the illnesses enough to be able to write these individualized letters… so that duty falls on the shoulders of the physicians.”
“It is difficult for my call partners to care for my patients with complex medical needs. A great deal of time needs to be invested to know these patients well enough to make basic medical care decisions.”
Formal Training
Lectures
Conferences
Continuing Education
Personal Experience
- Direct patient care
Fund of Knowledge
Emotional Comfort
Results
Twenty six percent of pediatricians responded to the survey (n=59). Eighty-one percent of participating physicians stated that less than 10% of their practice consists of CMC, defined using the same criteria as the TCH Special Needs Clinic. Ninety-one percent of participating physicians answered that it is important for community pediatricians to care for CMC. However, 56% of participating physicians also agreed with the statement that CMC should be the responsibility of specialized clinics and providers. The quantitative data demonstrated that the 4 areas that community pediatricians felt the least comfortable managing were screening for caregiver fatigue, management of aggressive behavior in a non-verbal patient, determining an appropriate number of private duty nursing hours, and management of tracheal secretions. Of the 12 common chief complaints, only three chief complaints were rated at a moderate comfort level or above. The qualitative data showed that time was the most contributory barrier for caring for CMC. Recurrent themes of time, paperwork, interest and reimbursement were identified as barriers to caring for CMC in the community pediatrician’s office.
Conclusions
Community pediatricians perceive themselves as ill-equipped and uncomfortable managing common social and medical chief complaints related to CMC.
There is a division among community pediatricians regarding who is responsible for the care of CMC.
Community pediatricians perceive numerous barriers to caring for CMC in their office including lack of time, ancillary staff and interest.
It is our hope that with additional educational resources, community pediatricians will feel more confident in caring for CMC. This data is the beginning of a quality improvement projection. Future goals will include production and dissemination of a manual detailing management guidelines and community resources as well as a reassessment survey after this intervention.
References
Texas Report from the National Survey of Children’s Health. Child and Adolescent Health Measurement Initiative, Data Resource Center for Child and Adolescent Health website. Retrieved 10/01/2016 from
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Texas Pediatric Society Electronic Poster Contest