There was no statistically significant difference in patient-reported outcomes for short-term integrated palliative care compared with standard care in those with long-term neurological conditions.
There was no statistically significant difference in patient-reported outcomes for short-term integrated palliative care (SIPC) compared with standard care in those with long-term neurological conditions (LTNC), according to study findings published in JAMA Network Open.
As researchers noted, palliative care has shown benefit among patients with advanced stages of cancer. Moreover, positive implications have been suggested in the field of neurological disease, with a prior study showing that patients with Parkinson disease (PD) and related disorders who received palliative care exhibited improved quality of life and better symptom burden after 6 months, compared with standard care.
While promising, researchers highlighted the lack of high-quality evidence to support palliative care policy and service developments for patients with LTNC. For neurological, progressive conditions such as PD, as the disease duration increases, reported instances of OFF periods do as well. After 4 to 5 years, OFF periods occur in 40% of patients, which then increases to 70% after 9 years, warranting greater need of attributable interventions.
Researchers assessed the effectiveness of a SIPC intervention compared with standard care for people with LTNC across 7 hospitals with both neurology and palliative care services in the United Kingdom from April 1, 2015, to November 30, 2017, with a last follow-up date of May 31, 2018. The phase 3, randomized clinical trial recruited 535 patients with LTNC, of which 350 were randomized (1:1 ratio; SIPC, n = 176; standard care, n = 174).
The study cohort included patients aged 18 years or older, with any advanced stage of multiple sclerosis, motor neuron disease, idiopathic PD, multiple system atrophy, or progressive supranuclear palsy. The primary outcome examined the change in 8 key palliative care symptoms from baseline to 12-weeks via the Integrated Palliative care Outcome Scale for neurological conditions. Secondary outcomes assessed the change in the burden of other symptoms, health-related quality of life, caregiver burden, and costs.
In addition to the patient cohort, 229 informal caregivers were recruited. When comparing the efficacy of SIPC intervention and standard care, there was more symptom reduction in the SIPC group for the mean change in primary outcome, but the difference between the groups was not statistically significant (−0.78; 95% CI, −1.29 to −0.26 vs −0.28; 95% CI, −0.82 to 0.26; P = .14). There was no significant difference in any other patient-reported outcomes, adverse events, or survival.
While no statistically significant clinical benefit was observed, a decrease in mean health and social care costs from baseline to 12 weeks was noted as −$1367 (95% CI, −$2450 to −$282) for the SIPC group and −653 (95% CI, −$1839 to −$532) in the control group. However, this difference was not statistically significant (P = .12).
“SIPC was perceived by patients and caregivers as building resilience, attending to function and deficits, and enabling caregivers,” concluded the study authors. “Refining referral criteria to better match patients to SIPC and intervention optimization may help to support wider implementation of this new care model in practice.”
Gao W, Wilson R, Hepgul N, et al. Effect of short-term integrated palliative care on patient-reported outcomes among patients severely affected with long-term neurological conditions: A randomized clinical trial. JAMA Netw Open. doi:10.1001/jamanetworkopen.2020.15061