Table 1.

Descriptive information on the included articles, in alphabetical order

No.	Author(s)	Publication date Country	Design/ Level of evidence	Participants	Topic
1	Aubeeluck et al.	2011 UK	Narrative review V	n/a	Physical care Psychological care Social care Advance care planning Health care services
2	Booij et al.	2013 the Netherlands	Survey III	14 HD patients, 5 going to daycare facility or living in a nursing home	Advance care planning
3	Booij et al.	2013 the Netherlands	Survey III	15 physicians (4 general practitioners, 7 nursing home physician, 2 psychiatrists, 2 neurologists)	Advance care planning
4	Booij et al.	2014 the Netherlands	Survey III	134 HD patients visiting out-patient clinics; mean TFC 8.5 (3.9)	Advance care planning
5	Brotherton et al.	2012 UK	Guideline V	n/a	Physical care
6	Carlozzi et al.	2016 USA	Survey II	507 manifest or pre-manifest HD patients (117 late-stage)	Advance care planning End-of-life needs assessments
7	Carlozzi et al.	2018 USA	Survey II	508 manifest or pre-manifest HD patients (114 late-stage)	Advance care planning End-of-life needs assessments
8	Carlozzi et al.	2019 USA	Survey II	507 manifest or pre-manifest HD patients (109 late stage)	End-of-life needs assessments
9	Dawson et al.	2004 Australia	Survey III	6 HD patients (1 middle/late stage); 19 informal carers (9 caring for HD patient in middle/late stage); 7 health care workers	Social care Health care services
10	Dellefield et al.	2011 USA	Narrative review V	n/a	Physical care Psychological care Social care Spiritual care Health care services
11	Downing et al.	2018 USA	Survey III	503 HD patients (113 late stage: TFC 0–6)	Advance care planning
12	Ekkel et al.	2021 the Netherlands	Survey III	12 patients (7 outpatient, 3 daycare, 2 assisted living facility)	Advance care planning
13	Hamedani et al.	2020 USA	Cross-sectional study IV	1614 hospital admissions for gastrostomy in HD patients	Physical care Health care services
14	Johnson et al.	2018 USA	Cross-sectional study IV	101 HD patients referred to hospice care, data extracted from CHOICE database	Physical care Social care Health care services
15	Kavanaugh et al.	2016 USA	Survey III	40 youth caregivers (children) of HD patients (age 12–20)	Social care Advance care planning
16	Kendrick et al.	2019 USA	Case study IV	1 pediatric HD patient from the age of 6 to 12	Social care Pediatric HD care Advance care planning
17	Kent	2015 UK	Narrative review V	n/a	Advance care planning
18	Kristjanson et al.	2006 Australia	Survey III	48 HD patients (4 receiving palliative care services); 56 HD caregivers (6 receiving palliative care services)	Physical care Health care services
19	Lamers	2006 USA	Case report V	1 HD patient receiving hospice care	Physical care Health care services
20	Lentz	2014 USA	Case report V	52-year-old HD patient, assisted-living facility	Health care services
21	Lindblad et al.	2010 Sweden	Survey III	667 physicians (internal medicine, surgery, intensive-care/anesthesiology, general practice and psychiatry); 625 general public	Advance care planning
22	Macleod	2005 New Zealand	Narrative review V	n/a	Advance care planning Health care services
23	Macleod et al.	2016 New Zealand	Narrative review V	n/a	Physical care Psychological care Social care Health care services
24	Marks et al.	2011 USA	Narrative review V	n/a	Physical care Psychological care Social care Advance care planning Health care services
25	Mendizabal et al.	2017 USA	Cross-sectional study IV	271 pediatric HD patients from the USA KID database, aged 5–20	Pediatric HD care
26	Mestre et al.	2017 Canada/USA	Narrative review V	n/a	Physical care Social care Advance care planning Health care services
27	Miller et al.	2012 USA	Case report V	13-year-old pediatric HD patient	Pediatric HD care
28	Moskowitz et al.	2001 USA	Narrative review V	n/a	Physical care Psychological care Advance care planning Health care services
29	Moskowitz et al.	2017 USA	Narrative review V	n/a	Physical care Psychological care Advance care planning Health care services
30	Phillips et al.	2008 UK/USA	Narrative review V	n/a	Physical care Psychological care Pediatric HD care Health care services
31	Roscoe et al.	2009 USA	Survey III	17 caregivers of late-stage HD patients (8 patients living at home, 7 in nursing home, 2 in assisted-living facilities or residential group homes)	Social care Spiritual care Health care services
32	Røthing et al.	2014 Norway	Survey III	15 family caregivers (aged 20–67) of HD patients (caring for parent, spouse, siblings or adult children)	Social care Health care services
33	Røthing et al.	2015 Norway	Survey III	15 family caregivers (aged 20–67) of HD patients (caring for parent, spouse, siblings or adult children)	Social care Spiritual care Health care services
34	Shah et al.	2021 Australia	Case report V	26-year-old patient referred to neuro-palliative ward	Advance care planning Health care services
35	Simpson	2007 UK	Narrative review V	n/a	Physical care Advance care planning Health care services
36	Sokol et al.	2021 USA	Survey III	322 patients (101 late stage)	Spiritual care
37	Sokol et al.	2021 USA	Cross-sectional study IV	8521 patients admitted to hospital, 321 receiving specialty palliative care	Health care services
38	Tarolli et al.	2017 USA	Narrative review V	5 HD patients (2 in advanced stage, 1 living in nursing home, 1 receiving hospice care)	Social care Advance care planning Health care services

HD: Huntington’s Disease

TFC: total functional capacity (mean, SD)

KID: Kids’ Inpatient Database

CHOICE: Coalition of Hospices Organized to Investigate Comparative Effectiveness

n/a: not applicable