Effect of Short-term Integrated Palliative Care on Patient-Reported Outcomes Among Patients Severely Affected With Long-term Neurological Conditions

Abstract

This randomized clinical trial evaluates the effect of short-term integrated palliative care vs standard care among patients severely affected by long-term neurological conditions.

Palliative Care Intervention Trials for Adults Living With Progressive Central Nervous System Diseases and Their Caregivers: A Systematic Review

“…15 To summarize, Latorraca et al found no evidence of differences between intervention and control groups > 6 months post-intervention and concluded they are uncertain whether PCIs are beneficial for people with MS in the setting of low-or very low-certainty evidence regarding the difference between PCI versus usual care for long-term health-related quality of life, adverse events, and hospital admission in patients with MS. 15 Thus, all 4 review author teams reported the same conclusion: more quantitative research investigating PCI is needed to provide evidence for clinical practice. Two phase III RCTs investigating PCI in adults with PCNSDs using patient-reported outcomes and caregiver-reported outcomes to assess PCI effectiveness were published in 2020, containing 964 total participants (560 patients and 404 caregivers), 24,25 warranting initiation of an updated systematic review.…”

“…Another RCT published results and analyses in 2 different publications. 25,34 Three Cochrane review [14][15][16] and 1 systematic review 17 were also identified and screened for any additional RCTs. One RCT 22 met this review's inclusion/exclusion criteria, yielding a total of 5 RCTs for qualitative synthesis.…”

“…Of the 3 phase II RCTs, 2 enrolled people living with MS and their caregivers (in London, England and 3 locations in Italy, respectively) and the third enrolled people living with MS, motor neuron disease or a movement disorder and their caregivers in Turin, Italy. 30,21,22,23 Of the 2 phase III trials; 24,25,34 there was a pragmatic design study investigating an outpatient integrated palliative care model of delivering PCI in an outpatient movement disorder clinic setting at 3 different academic centers ( 2 in the United States and 1 in Canada). 24 and the other investigated specialty palliative care delivered as a brief, targeted PCI in the outpatient setting for patients and their caregivers already receiving primary medical and specialty neurologic care for MS, motor neuron disease or a movement disorder at one of 7 different sites across the United Kingdom.…”

“…24 and the other investigated specialty palliative care delivered as a brief, targeted PCI in the outpatient setting for patients and their caregivers already receiving primary medical and specialty neurologic care for MS, motor neuron disease or a movement disorder at one of 7 different sites across the United Kingdom. 25,34 The palliative care domains as defined by the National Consensus Project for Quality Palliative Care publication Clinical Practice Guidelines for Quality Palliative Care, 4 th edition 35 incorporated by each of the 5 RCTs are summarized in Table 3. The number of domains incorporated ranged from 4 to 6 without correlation to phase, study size, study population or palliative care delivery model.…”

“…The number of domains incorporated ranged from 4 to 6 without correlation to phase, study size, study population or palliative care delivery model. Four RCTs (all 3 phase II trials and 1 phase III trial) investigated specialty palliative care model of PCI delivery and conducted their PCT visits at the patients' homes [21][22][23]25,[30][31][32][33][34] with 2 studies also accommodating visits in other medical settings as warranted 21,25,[30][31][32]34 although only 1 specifying how often this occurred. 32 However, only 3 of these 4 specialty palliative care model studies employed palliative medicine trained physicians and nurses in their interdisciplinary PCTs 21,22,25,30,[32][33][34]36 as 1 study's PCT physician members were neurologists or physiatrists.…”