Table 1 Descriptive information on the included articles, in alphabetical order
From: Palliative care in advanced Huntington’s disease: a scoping review
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 |