Duchenne muscular dystrophy (DMD) is a progressive multisystem disease, but with advances in therapeutics and technology, affected individuals are living longer. It is therefore important to address transitioning to adulthood, including healthcare power of attorney determination and advanced care planning. Additionally, psychological assessment and intervention are critical components to care in this population as anxiety and depression are frequently endorsed.
Guidelines in the management of DMD recommend that Palliative Care and Psychological services be incorporated into the care of these individuals. Comprehensive multidisciplinary DMD clinics should include Palliative Care and Psychology specialists as part of the regular care team to address critical needs in the health of these individuals.
The primary aim of this project was to incorporate Palliative Care and Psychology specialists into the multidisciplinary clinic at Nationwide Children’s Hospital.
Using SMART AIM statements and quality improvement (QI) principles, we implemented a QI project to fully integrate Palliative Care and Psychology into the multidisciplinary team and increase the rate of completion of routine Palliative Care and Psychology referrals. At baseline, we had 0% of patients referred for routine Palliative Care and Psychology services and thus, 0% referrals completed. 19 months after initiation, the mean completion of Palliative referrals was sustained at 90%. 100% of routine Psychology referrals were completed at 7 months, but Psychology was incorporated into the clinic outside of the QI project thereafter. Palliative Care and Psychology providers are now both routine members of the multidisciplinary DMD team at Nationwide Children’s Hospital.
Palliative Care and Psychology are critical components of the comprehensive care for patients with DMD. It is reasonable and feasible to include Palliative Care and Psychology providers in the multidisciplinary clinic to provide complete care to these individuals.