Initially, 133 indicators were developed. Thirty-nine indicators (30%) were restructured or reworded for clarity, 15 (11%) were omitted based on the rating criteria described above, 3 (2%) were consolidated and an additional 3 were added based on panelists’ suggestions. The final number of indicators in each domain is shown in ; there were 119 in total. There was a high degree of agreement on these indicators as valid and feasible quality measures for children with TBI, as evidenced by an indicator retention rate of 89%, which is relatively high when compared with prior studies reporting indicator retention rates ranging from 70–87%.34–36
As can be seen, many indicators were based on a combination of expert opinion and some scientific evidence. The full set of indicators is available in the online appendix
. The indicators in each domain are briefly reviewed below.
Number of process of care quality indicators for each domain
These indicators focus on the components of care deemed necessary in the initial general medical assessment of children with TBI as well as the pre-injury functioning of the child and family. They assess whether the child is seen by a multidisciplinary team, the development of a treatment and monitoring plan to track the improvement of the child during the inpatient rehabilitation hospitalization, and for the coordination of care among a multidisciplinary team. Indicators were also developed for the management of the overall health of the child such as sleep and nutrition, and the prevention of secondary complications such as decubitus ulcers and nosocomial infections.
Indicators for this and all the other domains were grouped into assessment, interventions and follow-up care. Assessment indicators were developed for both the initial and ongoing assessment of the impact of the TBI on the family, including needs, supports, coping skills and general family functioning. These provide the basis for intervention to educate the family about TBI and assist them with identified needs, both during the stay and post-discharge. Post-discharge services include community-based respites for social support, telephone counseling services and a contact person on the rehabilitation team.
Cognitive-communication, speech, language and swallowing impairments
Assessment indicators focused on impairments in cognitive-communication and language skills, motor speech, swallowing and aspiration risk. Intervention indicators primarily focused on functional strategies to be used in school and other natural contexts, such as strategies for social language use, memory and executive functions as well as a plan for continuing cognitive-communication skills development post-discharge.
Gross and fine motor skill impairments
Indicators were developed for the assessment of gait, mobility, balance, performance of activities of daily living (ADLs), vision and kitchen safety. Intervention indicators focused on treating impairments in range of motion, strength, tone mobility, ADLs, use of upper extremities. Detailed indicators were developed on the training of caregivers (e.g., to assist with transfers) as well as post-discharge referrals to physical and occupational therapists and durable equipment needs.
Neuropsychological, social and behavioral impairments
The process of care indicators for the assessment of neuropsychological function and impairments included documentation of pre-injury functioning and measures of social-emotional behavior. The indicators for intervention reflect processes for implementing and measuring the effectiveness of behavioral intervention plans for both children and their families and medications, as well as documented opportunities for practice of skill generalization.
Indicators were developed for the educational evaluation of patients by educational specialists in a simulated classroom setting, and coordination of re-entry with school personnel. Processes of care for school re-entry included provision of information about the child and educational placements/services, and ongoing communication with school staff, families and school liaisons.
Indicators in this domain focused on assessment of pre-injury lifestyle, participation in leisure, play, and recreational activities, and social interactions with peers and family. It included structured outings during the inpatient stay, education about transportation and recreational safety, and plans for time to return safely to former community activities.