Table 2 Results of the review of literature and the semistructured interviews—self-reported findings

Physical health

Symptoms

Pain

Bouchard et al. [13], Briand et al. [21], Çakar et al. [23], Dougherty et al. [36], Sahin et al. [116]

4

Cramps and spasms

Bouchard et al. [13], Briand et al. [21], Gagnon et al. [46], Habibzadeh et al. [59], Leavitt et al. [74], Rezende Filho et al. [107]

5

Fatigue

N/D¹

10

Functions

Lower limbs and mobility

Impaired walking

Abkur et al. [1], Agarwal et al. [3], Agarwal et al. [2], Bourassa et al. [19], Breckpot et al. [20], Çakar et al. [23], Chen et al. [27], Cho et al. [28], Dougherty et al. [36], Grieco et al. [56], Gücüyener et al. [57], Habibzadeh et al. [59], Haga et al. [60], Kamada et al. [66], Kwon et al. [72], Lu et al. [79], McKenzie et al. [83], Martin et al. [80], Masciullo et al. [82], Miyatake et al. [87], Ogawa et al. [91], Pensabene et al. [102], Petrov [103], Prodi et al. [106], Rezende Filho et al. [107], Sahin et al. [116], Samanci et al. [117], Verhoeven et al. [135], Wagner et al. [140], Xiromerisiou et al. [143]

8

Loss of mobility

Aida et al. [4], Bouchard [12], Bouchard et al. [14], Bouchard et al. [15], Cho et al. [28], El Euch-Fayache et al. [40], Gagnon et al. [46, 49], Gazulla et al. [52], Grieco et al. [56], Kwon et al. [72], Pensabene et al. [102], Petrov [103], Robitaille et al. [113], Sahin et al. [116], Samanci et al. [117], Sheetal et al. [119], Shimazaki et al. [120], Srikajon et al. [123], Terracciano et al. [128], Tzoulis et al. [131]

N/D

Use of walking aid

Aida et al. [4], Al-Ajmi et al. [5], Anheim et al. [7], Bourassa et al. [19], Breckpot et al. [20], Gagnon et al. [48], Garcia et al. [51], Haga et al. [60], Hara et al. [63], Incecik et al. [64], Kamada et al. [66], Leavitt et al. [74], Lessard et al. [76], Liew et al. [77], Miyatake et al. [87], Narayanan et al. [89], Ogawa et al. [91], Palmio et al. [99], Richter et al. [112], Sahin et al. [116], Samanci et al. [117], Shimazaki et al. [120], Srikajon et al. [123], Terracciano et al. [128], van Lint et al. [133], Verhoeven et al. [134], Wang et al. [141]

N/D

Stiffness

Agarwal et al. [2], Bouchard et al. [13], Breckpot et al. [20], Griecio (2004), Haga et al. [60], Leavitt et al. [74], Samanci et al. [117], Wagner et al. [140]

7

Foot abnormalities

Abkur et al. [1], Agarwal et al. [2], Agarwal et al. [3], Al-Ajmi et al. [5], Ali et al. [6], Anheim et al. [7], Baets et al. [9], Bouchard [12], Bouchard et al. [13], Burguêz et al. [22], Çakar et al. [23], Chen et al. [27], Criscuolo et al. [30], Desserre et al. [34], Duquette et al. [38], Dziewulska [39], El Euch-Fayache et al. [40], Gazulla et al. [52], Gazulla et al. [53], Gazulla et al. [54], Gregianin et al. [55], Grieco et al. [56], Habibzadeh et al. [59], Hamza et al. [62], Hara et al. [63], Incecik et al. [64], Kamada et al. [66], Krygier et al. [69], Kwon et al. [72], Leavitt et al. [74], Liu et al. [78], Lu et al. [79], Masciullo et al. [81], McKenzie et al. [83], Mignarri et al. [85], Miyatake et al. [87], Ogawa et al. [91], Okawa et al. [93], Ouyang et al. [95], Pablo et al. [96], Palmio et al. [99], Parkinson et al. [100], Pedroso et al. [101], Pensabene et al. [102], Prodi et al. [106], Ricca et al. [110], Rezende Filho et al. [107], Ricca et al. [109], Saffie et al. [115], Sahin et al. [116], Shimazaki et al. [120], Shimazaki et al. [122], Terracciano et al. [128], Terracciano et al. [129], Vermeer et al. [136], Vill et al. [137], Wang et al. [141]

2

Balance

Abkur et al. [1], Agarwal et al. [2], Agarwal et al. [3], Al-Ajmi et al. [5], Bouchard [12], Bouchard et al. [13], Bouchard and Langlois [16], Bourassa et al. [19], Burguêz et al. [22], Cho et al. [28], Dougherty et al. [36], Gagnon et al. [46], Habibzadeh et al. [59], Incecik et al. [64], Kuchay et al. [71], Liu et al. [78], Lu et al. [79], McKenzie et al. [83], Miyatake et al. [87], Narayanan et al. [89], Palmio et al. [99], Prodi et al. [106], Sahin et al. [116], Samanci et al. [117], Sheetal et al. [119], Srikajon et al. [123], van Lint et al. [133], Wagner et al. [140], Wang et al. [141], Xiromerisiou et al. [143], Yamamoto et al. [144]

11

Upper limbs

Dexterity

Gagnon et al. [47], Incecik et al. [64], Martin et al. [80], Okawa et al. [93], Sahin et al. [116], Sheetal et al. [119], Terracciano et al. [129], Wang et al. [141]

9

Strength

Bouchard et al. [13, 14], Bourassa et al. [19], Gazulla et al. [52], Gregianin et al. [55], Grieco et al. [56], Hara et al. [63], Kamada et al. [66], Leavitt et al. [74], Okawa et al. [93], Palmio et al. [99], Parkinson et al. [100], Picher-Martel and Dupre [104], Ricca et al. [109], Richards et al. [111], Vermeer et al. [136], Wang et al. [141]

N/D

Muscle atrophy and weakness

Abkur et al. [1], Aida et al. [4], Al-Ajmi et al. [5], Ali et al. [6], Anheim et al. [7], Baets et al. [9], Bouchard et al. [13], Breckpot et al. [20], Burguêz et al. [22], Çakar et al. [23], Chen et al. [27], Dougherty et al. [36], Gagnon et al. [47], Gazulla et al. [52], Gazulla et al. [54], Gregianin et al. [55], Grieco et al. [56], Hara et al. [63], Kamada et al. [66], Krygier et al. [69], Kuchay et al. [71], Leavitt et al. [74], Liu et al. [78], Lu et al. [79], Masciullo et al. [82], McKenzie et al. [83], Miyatake et al. [87], Okawa et al. [93], Palmio et al. [99], Parkinson et al. [100], Picher-Martel and Dupre [104], Pensabene et al. [102], Prodi et al. [106], Ricca et al. [109], Ricca et al. [110], Richards et al. [111], Samanci et al. [117], Shimazaki et al. [121], Shimazaki et al. [122], Terracciano et al. [129], Tzoulis et al. [131], Vermeer et al. [136], Vill et al. [137], Xiromerisiou et al. [143], Yamamoto et al. [144]

8

Coordination

Gagnon et al. [47], Leavitt et al. [74], Lessard et al. [76], Lu et al. [79], McKenzie et al. [83], Oguz et al. [92], Sheetal et al. [119]

6

Bladder and bowel functions

 4

Urinary urgency

Bouchard et al. [13], El Euch-Fayache et al. [40], Gregianin et al. [55], Grieco et al. [56], Leavitt et al. [74], McKenzie et al. [83], Mignarri et al. [85], Prodi et al. [106], Synofzik et al. [127], Terracciano et al. [129], Tzoulis et al. [131], Vermeer et al. [136], Wang et al. [141]

N/D

Urinary incontinence

Bouchard [12], Bouchard et al. [13], Gregianin et al. [55], Mignarri et al. [85], Miyatake et al. [87], Sahin et al. [116], Synofzik et al. [127], Tzoulis et al. [131]

N/D

Fecal urgency

Bouchard [12], Briand et al. [21], Gregianin et al. [55], Synofzik et al. [127]

N/D

Other bladder and bowel dysfunctions

Dziewulska [39], Miyatake et al. [87], Palmio et al. [99], Rezende Filho et al. [107], Yamamoto et al. [144]

N/D

Sexual functions

Miyatake et al. [87], Synofzik et al. [127]

2

Dysarthria

Agarwal et al. [2], Agarwal et al. [3], Aida et al. [4], Al-Ajmi et al. [5], Ali et al. [6], Anheim et al. [7], Baets et al. [9], Blumkin et al. [10], Borruat et al. [11], Bouchard [12], Bouchard et al. [13], Bouchard et al. [15], Bouchard and Langlois [16], Bouhlal et al. [18], Breckpot et al. [20], Burguêz et al. [22], Chen et al. [27], Cho et al. [28], Criscuolo et al. [30], Desserre et al. [34], Duquette et al. [38], Dziewulska [39], El Euch-Fayache et al. [40], Garcia et al. [51], Gazulla et al. [53], Grieco et al. [56], Gücüyener et al. [57], Habibzadeh et al. [59], Haga et al. [60], Hamza et al. [62], Hara et al. [63], Incecik et al. [64], Kamada et al. [66], Karuvath et al. [67], Krygier et al. [69], Kuchay et al. [71], Kwon et al. [72], Leavitt et al. [74], Lu et al. [79], Martin et al. [80], Masciullo et al. [82], McKenzie et al. [83], Mignarri et al. [85], Miyatake et al. [87], Narayanan et al. [89], Ogawa et al. [91], Oguz et al. [92], Ouyang et al. [95], Palmio et al. [99], Pedroso et al. [101], Pensabene et al. [102], Petrov [103], Ricca et al. [110], Richter et al. [112], Robitaille et al. [113], Sahin et al. [116], Samanci et al. [117], Sheetal et al. [119], Shimazaki et al. [120], Shimazaki et al. [122], Srikajon et al. [123], Stevens et al. [124], Synofzik et al. [127], Terracciano et al. [128], Terracciano et al. [129], Tzoulis et al. [131], Van Damme et al. [132], van Lint et al. [133], Verhoeven et al. [134], Vermeer et al. [136], Vill et al. [137], Vingolo et al. [138], Vogel et al. [139], Wagner et al. [140], Wang et al. [141], Yamamoto et al. [144]

5

Eye function

Abkur et al. [1], Agarwal et al. [2], Agarwal et al. [3], Aida et al. [4], Al-Ajmi et al. [5], Anheim et al. [7], Anheim et al. [8], Baets et al. [9], Blumkin et al. [10], Borruat et al. [11], Bouchard [12], Bouchard et al. [13], Bouchard et al. [15], Bouchard and Langlois [16], Bouhlal et al. [18], Burguêz et al. [22], Çakar et al. [23], Cho et al. [28], Criscuolo et al. [30], Desserre et al. [34], Dionne et al. [35], Dougherty et al. [36], Douglas et al. [37], Duquette et al. [38], Dziewulska [39], El Euch-Fayache et al. [40], Garcia et al. [51], Gazulla et al. [52], Gazulla et al. [53], Gazulla et al. [54], Grieco et al. [56], Gücüyener et al. [57], Habibzadeh et al. [59], Hamza et al. [62], Hara et al. [63], Incecik et al. [64], Kamada et al. [66], Krygier et al. [69], Kuchay et al. [71], Kwon et al. [72], Leavitt et al. [74], Liew et al. [77], Liu et al. [78], Lu et al. [79], Masciullo et al. [81], McKenzie et al. [83], McMillan et al. [84], Miyatake et al. [87], Narayanan et al. [89], Ogawa et al. [91], Oguz et al. [92], Okawa et al. [93], Ouyang et al. [95], Pablo et al. [96], Palmio et al. [99], Parkinson et al. [100], Pedroso et al. [101], Pensabene et al. [102], Picher-Martel and Dupre [104], Rezende Filho et al. [107], Rezende Filho et al. [108], Ricca et al. [109], Richter et al. [112], Sahin et al. [116], Samanci et al. [117], Sheetal et al. [119], Shimazaki et al. [120], Shimazaki et al. [121], Stevens et al. [124], Srikajon et al. [123], Synofzik et al. [127], Terracciano et al. [128], Terracciano et al. [129], Tzoulis et al. [131], van Lint et al. [133], Vermeer et al. [136], Vill et al. [137], Vingolo et al. [138], Wang et al. [141], Xiromerisiou et al. [143], Yamamoto et al. [144], Yu-Wai-Man et al. [145]

2

Dysphagia

Bouchard et al. [13], Cho et al. [28], Gagnon et al. [48], Grieco et al. [56], McKenzie et al. [83], Miyatake et al. [87], Prodi et al. [106], Rezende Filho et al. [107], Sahin et al. [116], Samanci et al. [117], Shimazaki et al. [120], Terracciano et al. [129], Tzoulis et al. [131], Vermeer et al. [136], Vingolo et al. [138], Vogel et al. [139]

5

Physical activities

Aida et al. [4], Dougherty et al. [36], Habibzadeh et al. [59], Haga et al. [60], Ouyang et al. [94], Sheetal et al. [119], Shimazaki et al. [120], Wagner et al. [140], Wang et al. [141], Xiromerisiou et al. [143], Yamamoto et al. [144]

5

ADLs

Bourassa et al. [19], Gagnon et al. [47], Gagnon et al. [48], Petrov [103]

7

Mental health

Affect

Anxiety

Forgue et al. [44], Mignarri et al. [85]

2

Depression

Forgue et al. [44], Mignarri et al. [85], Petrov [103]

4

Frustration

Mignarri et al. [85]

6

Negative psychosocial impact of illness

Forgue et al. [44]

2

Cognition

Cognitive abilities

Ali et al. [6], Bouchard et al. [13, 14], Breckpot et al. [20], Çakar et al. [23], Dougherty et al. [36], Gücüyener et al. [57], Kamada et al. [66], Kuchay et al. [71], Mignarri et al. [85], Ogawa et al. [91], Oguz et al. [92], Okawa et al. [93], Petrov [103], Pilliod et al. [105], Prodi et al. [106], Ricca et al. [109], Richter et al. [112], Shimazaki et al. [121], Terracciano et al. [128], Verhoeven et al. [134], Yamamoto et al. [144]

10

Memory

Briand et al. [21], Hara et al. [63], Krygier et al. [69]

N/D

Attention

Briand et al. [21]

N/D

Other cognitive dysfunctions

Desserre et al. [34], Duquette et al. [38], Hamza et al. [62], Hara et al. [63], Lu et al. [79], Prodi et al. [106], Tzoulis et al. [131]

N/D

Social health

Relationships

Forgue et al. [44]

6

Function

Work

Bourassa et al. [19], Forgue et al. [44], Tremblay et al. [130], Verhoeven et al. [134]

12

Studies

Breckpot et al. [20], Duquette et al. [38], Grieco et al. [56], Kamada et al. [66], Pilliod et al. [105], Prodi et al. [106], Sheetal et al. [119]

5

Parenthood

N/D

2

Social activities

Forgue et al. [44], Gagnon et al. [46], Gagnon et al. [47], Gagnon et al. [49]

9