Table 5:

STUDY PARTICIPANT CHARACTERISTICS

Author Year	Diagnosis	Inclusion/Exclusion Criteria	Demographics
Higgins et al 2006²² 2008,²³ 2009²¹, 2011²⁵ /Edmonds et al 2010²⁴	MS	▪ High EDSS (≥8 advised; referrals based on need, not disability) ▪ Excluded if referring clinician deemed patient to have urgent needs, screened by palliative medicine consultant.	N Patients = 52 - Primary progressive MS = 44% -Secondary progressive MS = 50% - other MS subtype or related disease = 6% -mean disease duration = 18 years (SD 9.6) -mean EDSS score = 7.8 N Caregivers = 43 Intervention arm: n patients = 26 - Female = 65% - mean age = 53years - White = 89% n caregivers = 20 - Partner/Spouse = 14 - Child = 4 - Sibling = 1 - Parent = 1 Usual care arm: n patients = 26 - Female = 73% - mean age = 53years - White = 92% n caregivers = 23 - Partner/Spouse = 15 - Child = 3 - Sibling = 2 - Parent = 3
Veronese et al 2015³²	MND, MS, PD, MSA, PSP	General signs of deterioration in neurological diseases: ▶ Progressive deterioration in physical or cognitive function despite optimal therapy ▶ Complex symptoms ▶ Swallowing problems leading to respiratory complications ▶ Speech problems: dysarthria and progressive dysphasia ▪ Excluded if cognitively unable to complete outcome measures (augmentative/alternative communication aids incentivized) Disease specific criteria: -MND: ▶ Disturbed sleep due to respiratory muscle weakness and dyspnea at rest and/or vital capacity <50% predicted ▶ Increased cognitive difficulties or barely intelligible speech ▶ Difficulty swallowing with poor nutritional status/weight loss ▶ Needs assistance with ADLs ▶ Medical complications (pneumonia, sepsis) - MS: 1. EDSS score ≥8.0 2. Presence of at least one of the following conditions: ▶ Significant complex symptoms and medical complications ▶ Dysphagia admissions with sepsis and poor nutritional status ▶ Communication difficulties ▶ Breathlessness - Movement disorder: 1. Hoehn and Yahr stage ≥4 2. No indication for neurosurgical procedures 3. The presence of ≥2 of the following criteria: ▶ Medications is less effective or increasingly complex regime ▶ Reduced independence, needs help with daily living ▶ Condition less controlled, less predictable with “off” periods ▶ Dyskinesias, mobility problems and falls ▶ Psychiatric signs (depression, anxiety, hallucinations, psychosis)	N Patients = 50 N Caregivers = 45 Of 50 patients: -n male = 30(60%) -n female = 20(40%) -mean age = 61years (n = 8 < 44years) -n ALS/MND = 16(32%) -n MS = 18(36%) -n MD = 16(32%) Of 45 caregivers: - Wife = 24(53%) - Husband = 12(27%) - Daughter = 4(9%) - Mother = 1(2%) - Sister = 1(2%) - Son = 1(2%)
Solari et al 2018²⁰	MS (primary or secondary progressive)	• age ≥18 years • non-institutionalized • EDSS score ≥8.0 or higher • complex symptoms • ≥2 unmet care needs	N = 76 dyads Intervention arm n patients = 50 - Female = 62% - mean age = 60.5years - mean age @dx = 37.5years +/−13.8years n caregivers = 50 -Female = 62% -mean age = 60.1years - Spouse/partner = 25(50%) - Parent = 8(16%) - Child = 8(16%) - Other relative = 7(14%) - Paid caregiver = 2(4%) Usual care arm n patients = 26 - Female = 46% - mean age = 56.8years - mean age @dx = 45.7years +/−10.9years n caregivers = 26 - Female = 61% - mean age = 60.8years - Spouse/partner = 15(58%) - Parent = 4(15%) - Child = 0 - Other relative = 6(23%) - Paid caregiver = 1(4%)
Kluger et al 2019²¹	Probable PD, MSA, CBD, PSP, LBD	• Moderate to high palliative care needs based on PC-NAT modified for Parkinson disease • Fluent in English ▪ Excluded if already receiving PC or if site investigator judged presence of clinically urgent PC needs or other illnesses possibly requiring PC.	N Patients = 210 N Caregivers = 175 Intervention Group: n patients = 106 - Female = 61% - mean age = 69.5years - White = 94% n caregivers = 87 - Female = 71% - mean age = 65.7years - White = 94% - Spouse = 81% - Child = 12% - Other = 8% Usual Care Group: n patients = 104 - Male = 67% - mean age = 70.7years - White = 89% n caregivers = 88 - Female = 75% - mean age = 66.4years - White = 88% - Spouses = 83% - Child = 8% - Other = 9%
Gao et al 2020²⁶/Hepgul et al 2020²⁷	MS, MND, IPD, PSP, MSA	1. Age ≥18 years old 2. Advanced or progressive stages of disease: • MS (EDSS score ≥7.5) • MND (all stages) • IPD (Hoehn and Yahr stages 4–5) • PSP (adapted Hoehn and Yahr stages 3–5) • MSA (adapted Hoehn and Yahr stages 3–5) 3. An unresolved symptom unresponsive to standard care 4. At least 1 of the following: • Another unresolved symptom • Cognitive problems or complex psychological issues • Communication or information issue, or complex social need ▪ Exclusions: already receiving specialist palliative care or had in last 6 months, lacking mental capacity with lack of a proxy to provide data Caregiver inclusion criteria: • Adults ≥18 years old identified by patient as a person close to them who is able and willing to complete questionnaires for study and give informed consent.	N Patients = 350 N Caregivers = 229 Intervention Group: n patients = 176 - Female = 51.1% - mean age = 67.3years (SD 10.9) - White = 94.3% - Median years (range) dx = 12.3 (0–56) - n MS = 74 (42.1%) - n MND = 11 (6.3%) - n IPD = 71 (40.3%) - n PSP = 13 (7.4%) - n MSA = 7 (4.0%) n caregivers = 121 - Female = 66.1% - mean age = 63.3years - White = 93.4% - Spouse = 67.2% Usual Care Group: n patients = 174 - Female = 46.6% - mean age = 66.4years - White = 86.2% - Median years (range) dx = 12.4 (0–46) - n MS = 74 (42.5%) - n MND = 12 (6.9%) - n IPD = 69 (39.7%) - n PSP = 14 (8.1%) - n MSA = 5 (2.9%) n caregivers = 108 - Female = 63% - mean age = 65.3years - White = 90.7% - Spouse = 84.3%

ADLs: activities of daily living; CBD: corticobasal degeneration; Dx: diagnosis; EDSS: Expanded Disability Status Score; IPD: idiopathic Parkinson disease; LBD: Lewy body dementia; MND: Motor neuron disease; MS: multiple sclerosis; MSA: multiple system atrophy; PC: palliative care; PC-NAT: Palliative Care Needs Assessment Tool; PD: Parkinson’s Disease; PSP: progressive supranuclear palsy.