Documentation of Health Conditions for Medically Complex Children Katharine Zuckerman, MD 0
I. The Problem A. Setting: The Pediatric Coordinated Care Clinic (CCC) at MassGeneral Hospital for Children (MGHfC) is a clinic for a small group of children with medically complex health care needs. The clinic focuses on coordination of communication, treatments, and care plans when multiple specialists and allied health professionals are involved in a child s health care. B. Health Care Service: The health care service that we seek to analyze is documentation of CCC patients medical conditions. CCC patients, by definition, have multiple medical problems, many of which are unfamiliar to most pediatric providers. These children often have special diets, drug allergies, or medication regimens that must be maintained when they are seen in the Emergency Department, by specialists, or at outside facilities. Because CCC patients medical problems are complex and unfamiliar, and because their needs for care are frequent and often emergent, adequate documentation of these patients medical conditions is critical. C. Problem - Under-use: Few CCC patients have complete or up-to-date documentation of their medical conditions in the MGHfC medical record, and even fewer have an adequate list of medical conditions that they can take to providers outside of MGHfC. This is a problem because an incomplete medical history often leads to delays in care or inappropriate care. A parent-reported verbal history is not an adequate substitute for medically complex children, because sometimes important information incorrect or omitted, particularly in emergency situations. For instance, consider James, a patient with a mitochondrial disorder and seizures, who was recently seen in the MGHfC Emergency Department for diarrhea. Due to his medical condition, James cannot receive medications or fluids containing dextrose or Lactated Ringers. In the Emergency Department, James mother could not remember the specific fluids he was not allowed to have. As a result, care was delayed for several hours while doctors tried to contact his neurologist. By the time he was given the appropriate fluid several hours later, he was seriously dehydrated and developed lactic acidosis. Though many factors lead to the delay in James treatment, inadequate documentation of his medical condition was certainly an important factor. 1
D. Barriers to Quality: There are multiple barriers to adequate documentation of patients medical conditions. A primary barrier lies in the design of the electronic medical record [EMR]. Although effective in many ways, the MGHfC EMR is designed for a primary care setting, and is not well structured for communication of complex medical conditions. Though the EMR allows providers to enter medical conditions on a summary sheet, this sheet does not allow viewing of detailed information, prioritizing the most important information, or printing out of information in a portable form. Many items must be entered by hand, which is time-consuming for providers. Because CCC patients are often cared for mostly by specialists, nobody takes ownership of the summary information. Another problem may be lack of stakeholder awareness of the importance of documentation. Since pediatric patients generally have few medical conditions, providers do not need to maintain an updated summary of medical conditions for the majority of patients. Thus, providers may not appreciate the benefits for the few complex patients that they see. Indeed, updating medical records might be seen as a time-consuming deviation from usual routines. Likewise, there is little institutional interest in this problem. There are no provider incentives for updating a patient s medical conditions, and no consequences for failing to do so. Since parents do not regularly view their child s medical record, they not able to note deficiencies or errors and hold providers accountable. II. Proposed Intervention A. Aim: This intervention aims for complete documentation of medical conditions on a standardized template for 50% of CCC patients by December, 2008 and 90% of patients by June, 2009. B. Process Defect and Proposed Intervention: The main process defect contributing to incomplete documentation is the medical record system itself; that is, the system is not well-suited for documentation of complex medical conditions. Although an ideal remedy to this solution would be to re-design the medical record system, doing so would be expensive and could have unintended consequences for less complex patients. Therefore, we propose to create a medical summary template that exists outside of the current medical record but can also be incorporated into the existing medical record system. 2
This proposed medical summary would consist of a one-page, standardized, printable document containing information on each child s active medical problems, medications, allergies, and medical history. For some patients, a treatment plan for frequent problems would be appended. The medical summary will be created by children s parents with help from CCC staff, using a standardized template. A copy of the parent-created document will be sent to each child s providers to verify information. The summary will then be entered as a custom note into the child s medical record, and will be updated as part of each visit to the CCC. This approach offers a number of benefits, some of which are found in Crossing the Quality Chasm 1 : (1) Anticipation of needs : documentation of medical information before acute problems arise will reduce miscommunications and delays in the acute setting. (2) The patient as the source of control : involving parents in the creation of the document is congruent with the hospital s mission of Family- Centered Care. Additionally, since many parents already create medical summaries for their child, the intervention will standardize this information. (3) Care based on continuous healing relationships : Parental involvement allows continuous input of up-to-date information between visits to the clinic and hospital (4) Shared knowledge and free flow of information : involving providers and parents in creation of the template will facilitate inter-disciplinary communication and allow portability outside of MGHfC. (5) Waste continuously decreased : Parental involvement will lessen the paperwork load on clinic personnel and eliminate the need for staff to enter every problem into the record by hand. C. Strategy: We will use a PDSA cycle to implement our proposed strategy. In the initial planning phase we will convene a stakeholder planning group that includes a CCC physician, nurse practitioner, family advocate, parent, and a representative from the MGH electronic medical records division. The group will use existing models of medical templates to create an appropriate template medical summary that can be placed into the current medical record system. Next, the planning group will solicit suggestions for the template from clinic providers and staff and from the hospital s Family Advisory Council (a group of hospital administrators and parents of medically complex children). The planning group will develop short paper surveys assessing parent and provider satisfaction with the template. 3
In the first do phase, we will pilot the new template medical summary and parent survey on at 10 CCC visits. We will then study the results of the parent and provider surveys and solicit suggestion for improvements. We will act on parent and provider suggestions to improve the template medical summary. When we are satisfied with the quality of the tool, we will begin the roll-out to all CCC providers. Prior to implementation of the tool, providers will be briefed on its use and importance with a PowerPoint presentation. We will suggest that providers start by introducing the tool to one family per clinic session until they are comfortable with its use. We will continue to survey parents and providers about satisfaction with the tool, and continue to make improvements for the first year of implementation. D. Measures: We will measure the effectiveness of the medical summaries in two ways (1) by the success of its adoption, measured as percent of children participating at the times stated above (2) by parent and provider satisfaction with the tool, as measured in the surveys. E. Barriers to change: An important barrier to change may be provider resistance. Providers may not want to take time out of the clinic visit to explain the template. However, since our visits are long (1 ½ hours/patient), and since the majority of the work will be done by the parents, we feel that implementation will ultimately be feasible. We will try to reduce this barrier by orienting providers to the tool, rolling out the templates slowly, and soliciting frequent feedback. Another important barrier may be parental responsibility the proposed intervention places responsibility on parents for updating and reporting information. Though a vast majority of our parents are already invested in this, some may not be capable or interested in participating. We will address this barrier by piloting the template and using parent feedback to make it easy-to-use. By targeting 90% enrollment, we acknowledge that the tool may be inappropriate for some families. F. Cost implications: Since the intervention is designed to fit into the existing record system, its cost should be minimal. There will be some cost in terms of provider time for development and implementation, but we hope that this cost will be offset by the time saved by having up-to-date information. 4
References: 1 Crossing the Quality Chasm: A New Health System for the 21 st Century. Washington: National Academy Press, 2007; 61-88. 5