Palliative care services in families of males with muscular dystrophy: Data from MD STARnet

Abstract

Introduction: Information on use of palliative care services among individuals with Duchenne and Becker muscular dystrophy is scant despite the clearly documented need. Methods: We examined associations between uptake of palliative care services by 233 males with Duchenne and Becker muscular dystrophy aged 12 and older for both caregiver and affected male characteristics using the Muscular Dystrophy Surveillance Tracking and Research Network baseline interview. Results: Ninety-one percent of caregivers (213/233) used at least one palliative care service. Case management had the highest frequency of use (59%). Use of palliative care was more frequently associated with the characteristics of affected males, as were some individual palliative care services. Utilization of six individual services differed among Muscular Dystrophy Surveillance Tracking and Research Network sites. While research suggests that pain is a frequent problem in Duchenne and Becker muscular dystrophy, only 12.5% reported use of pain management services. Discussion: Although palliative care use among families of males with Duchenne and Becker muscular dystrophy is high overall, there is much variability in use of individual services. Use of palliative care is driven by disease experience in the affected male. Many of the care recommendations for these individuals highlight the importance for early involvement of palliative care professionals.

Assessment of the relationship between disease progression and goals of care by individuals with Duchenne muscular dystrophy and their caregivers

“…This differs from both Edwards and colleagues, and Birnkrant and Noritz, who reported a patient‐caregiver‐perceived plateau of relative stability, which was a potential barrier to PC conversations 16,20,21 . Second, despite robust PC availability at both recruitment sites, the percentage of participants receiving pediatric PC in this cohort is dramatically lower than the 91% reported by Andrews and colleagues 14 . Taken together with results from the present study, there seems to be non‐uniform integration of PC services for patients with DMD nationally.…”

“…Palliative care (PC) clinicians are skilled in pain and symptom management and assessing and documenting goals of care. Andrews and colleagues reported the use of at least one PC service by 91% of 233 sampled caregiver/patient dyads seen within the Muscular Dystrophy Surveillance and Research Network (MD STARnet) sites 14 . Despite this apparent high penetration of PC services in patients with DMD, case management was the only service utilized by more than half of the participants.…”

Palliative Care in Pediatric Pulmonology

“…The palliative care needs of individuals with Neuromuscular Disorders will vary greatly depending on their diagnosis and goal of care [49]. Prognostication may be offered to the patient and family at the time of diagnosis and with changes in condition.…”

The adult multidisciplinary respiratory neuromuscular clinic

“…Palliative care input can provide positive support to patients with NMD, such as the perception of control over their illness, management of troublesome symptoms and future planning [100][101][102]. Qualitative assessments of patients [103] and bereaved relatives [104] have reported that patients would welcome the input of palliative services, and that otherwise death can involve unmanaged respiratory and psychological symptoms.…”