Table 3 Symptom/disease-specific quality of life tools per impactful symptom/category

Ataxia

Quality of Life in Essential Tremor Questionnaire (QUEST)

Communication, work and finances, hobbies and leisure, physical, psychosocial

30

 ≥ 18

Essential tremor

[37]

Multiple System Atrophy Quality of Life questionnaire (MSA-QoL)

Motor, nonmotor, emotional/social functioning

40

 ≥ 18

Multiple system atrophy

[38]

Cardiomyopathy

Kansas City Cardiomyopathy Questionnaire (KCCQ-12)

Physical limitation, symptom frequency, quality of life, and social limitation

12

No reference

Cardiomyopathy

[39]

Minnesota Living with Heart Failure Questionnaire (MLHFQ)

Physical impairment, emotional impairment

21

No specification ("elderly")

Heart failure

[40, 41]

Coagulopathy

Haemophilia-specific health-related quality of life questionnaire for adults (HAEMO-QoL-A)

Physical functioning, role functioning, worry, consequences of bleeding, emotional impact, treatment concerns

41

 ≥ 18

Haemophilia

[42]

Haemophilia-specific health-related quality of life questionnaire—short form (HAEMO-QoL-SF)

Physical health, feelings, view of yourself, family, friends, other people, sports & school, dealing with haemophilia and treatment

35

4–17 (4–7; 8–17)

Haemophilia

[43]

Canadian Haemophilia Outcomes-Kids’ Life Assessment Tool (CHO-KLAT)

Treatment, physical health, family, future, feelings, understanding of haemophilia, other people and friends, and control over your life

35

4–18

Haemophilia

[44]

Dysarthria

Quality of Life in the Dysarthric Speaker (QOL-Dys)

Speech characteristics of the word, situational difficulty, compensatory strategies, perceived reactions of others

40

 ≥ 18

Dysarthria

[45, 46]

Living with Neurologically Based Speech Difficulties (LwD)

Comunication problems related primarily to speech, comunication problems related primarily to language/cognition, comunication problems related primarily to fatigue, effects of emotions, effects of different persons, effects of different situations, consequences of my difficulties in communicating, what contributes to the changes in the ways I communicate, communicating like I would want to, how do I perceive changes and the possibility to alter my ways of speaking

50

 ≥ 18

Parkinson disease

[47]

Dysarthria impact profile (DIP)

The effects of dysarthria on me as a person; accepting my dysarthria; how i feel others react to my speech; how my dysarthria affects my communication with others

52

No reference

Dysarthria acquired through different diseases (e.g. multiple sclerosis, motor neuron discase, Parkinson disease, stroke, Friedreich ataxia)

[48]

Speech Handicap Index (SHI)

Psychosocial function; speech function

30

No reference

Oral and pharyngeal cancer

[49]

Dysphagia

Swallowing Quality Of Life (SWAL-QOL)

Burden, eating duration, eating desire, food selection, communication, fear, mental health, social, fatigue, and sleep

44

 ≥ 18

Friedreich ataxia; laryngotracheal disease; dysphagia

[50,51,52]

Deglutition Handicap Index (DHI)

Physical, functional and emotional

30

 ≥ 18

Dysphagia

[53, 54]

Eating Assessment Tool (EAT-10)

Unidimensional

10

 ≥ 18

Dysphagia

[55, 56]

Dysphagia Handicap Index (DHI)

Physical, emotional, and functional problems

25

 ≥ 18

Dysphagia

[57]

Food Allergy

Food Allergy Quality of Life Questionnaire—Parent Form (FAQLQ-PF)

Emotional impact, food anxiety, social/dietary limitations

30

0–12 (0–3; 4–6; 7–12)

Food allergy

[58]

Celiac Disease-specific DUX questionnaire (CDDUX)

Communication, having celiac disease, scale diet

12

8–18 (or their caregivers)

Celiac disease

[59]

Gastrointestinal problems

Short Inflammatory Bowel Disease Questionnaire (SIBDQ)

Bowel symptoms, systemic symptoms, emotional functioning, social functioning

10

 ≥ 18

Inflammatory bowel disease

[60]

Inflammatory Bowel Disease Questionnaire (IBDQ)-9

Total score

9

 ≥ 18

Inflammatory bowel disease

[61]

Irritable Bowel Syndrome Quality of Life Questionnaire (IBSQoL)

Emotional health, mental health, health belief, sleep, energy, physical functioning, diet, social role, physical role, and sexual relations

30

 ≥ 18

Irritable bowel syndrome

[62]

Irritable Bowel Syndrome Quality of Life (IBS-QOL)

Dysphoria, interference with activity, body image, health worry, food avoidance, social reaction, sexual, relationships

34

 ≥ 18

Irritable bowel syndrome, chronic functional constipation, inflammatory bowel disease

[63, 64]

Gastroesophageal Reflux Disease-Health Related Quality of Life (GERD-HRQL)

Total score

10 + 1 not scored

No reference

Gastroesophageal reflux disease

[65]

GastroIntestinal Quality of Life Index (GIQLI)

Core symptoms, physical items, psychological items, social items, disease-specific items

36

 ≥ 18

Gastrointestinal problems; type 2 diabetes mellitus; seveve obesity; post-Whipple surgery and postcholecystectomy

[66]

Scleroderma gastrointestinal tract 1.0 questionnaire (SSC-GIT 1.0)

Reflux/indigestion, diarrhea, constipation, pain, emotional well-being, social functioning

52

 ≥ 18

Systemic sclerosis

[67]

EORTC QLQ—Oesophageal Module 18 (OES18)

Dysphagia, eating, reflux, and pain plus 6 single items (swallowing saliva, choking, dry mouth, taste, cough, speech)

18

 ≥ 18

Dysphagia, esophageal eosinophilia, esophageal cancer

[68]

EORTC QLQ- Gastrointestinal Neuroendocrine Carninoid Module (GINET21)

Endocrine symptoms, GI symptoms, treatment-related symptoms, social functioning and disease-related worries plus 4 single-items (muscle and/or bone pain, body image, information and sexual functioning)

21

 ≥ 18

Gastroenteropancreatic neuroendocrine tumours

[69, 70]

Home parenteral nutrition-quality of life (HPN-QOL)

General health, ability to holiday or travel, coping, physical function, ability to eat and drink, employment, sexual function, and emotional function, body image, immobility, fatigue, sleep pattern, gastrointestinal symptoms, other pain, presence or absence of a stoma, financial issues, and weight

47

 ≥ 17

Chronic intestinal failure patients treated with home parenteral nutrition

[71, 72]

Izumo scale for abdominal symptom-related QOL

Heartburn, gastralgia, postprandial fullness, constipation, diarrhea

15

No reference

Type 2 diabetes mellitus; upper gastrointestinal symptoms, bone resorption and back pain in postmenopausal osteoporosis patients

[73]

Short Form-Nepean Dyspepsia Index (SF-NDI)

Interference with daily activities, knowledge/control, tension, work/study and eating/drinking

10

 ≥ 18

Irritable bowel syndrome

[74]

IBDQ-32

Bowel symptoms, systemic symptoms, emotional function and social function

32

 ≥ 18

Irritable bowel syndrome, irritable pouch syndrome and inflammatory bowel disease (Crohn disease and ulcerative colitis)

[75]

IBDQ-36

Bowel symptoms, systemic symptoms, functional impairment, emotional functioning, social impairment

36

 ≥ 18

Inflammatory bowel disease

[76]

Infections

Sino-Nasal Outcome Test (SNOT-22)

Rhinologic, extra-nasal rhinologic, and ear/facial symptoms, psychological and sleep dysfunction

22

 ≥ 16

Chronic rhinosinusitis

[77]

Sino-Nasal Outcome Test (SNOT-20)

Rhinologic, extra-nasal rhinologic, and ear/facial symptoms, psychological and sleep dysfunction

20

 ≥ 18

Bronchiectasis, allergic fungal rhinosinusitis

[78]

Leicester Cough Questionnaire (LCQ)

Physical, psychological and social

19

 ≥ 18

Bronchiectasis

[79]

Kyphosis/Scoliosis

Scoliosis Research Society (SRS-30)

Function/activity, pain, self-image/appearance, mental health, satisfaction with management

31

13–17, 18–64

Scoliosis

[80]

SRS-22; SRS-22r

Function/activity, pain, self-image/appearance, mental health, satisfaction with management

22

13–17; 18–64

Adolescent idiopathic scoliosis

[81, 82]

SRS-7

Unidimensional

7

13–18

Adolescent idiopathic scoliosis

[83]

Early-Onset Scoliosis Questionnaire (EOSQ-24)

General health, pain/discomfort, pulmonary function, transfer, physical function, daily living, fatigue/energy level, emotion, parental impact, financial impact, satisfaction

24

0–18

Early-onset scoliosis

[84]

Scoliosis Quality of Life Index (SQLI)

Physical activity performance, back pain, self-esteem, moods & feelings, and satisfaction with management

22

10–18

Adolescent idiopathic scoliosis

[85]

The Italian Spine Youth Quality of Life questionnaire (ISYQOL)

Unidimensional

20

10–18

Adolescent idiopathic scoliosis

[86, 87]

Liver problems

Chronic Liver Disease Questionnaire for NAFLD and NASH (CLDQ NAFLD/NASH)

Abdominal symptoms, activity/energy, emotional health, fatigue, systemic symptoms, and worry

36

 ≥ 18

Non-alcoholic steatohepatitis

[88, 89]

Chronic Liver Disease Questionnaire (CLDQ)

Fatigue, activity, emotional function, abdominal symptoms, systemic symptoms, and worry

29

 ≥ 18

Cirrhosis, hepatic encephalopathy, cholestatic liver diseases

[90]

Ophthalmological problems

National Eye Institute Visual Functioning Questionnaire—25 (NEI VFQ-25)

General vision, near vision, distance vision, driving, peripheral vision, color vision, ocular pain, general health, and vision-specific role difficulties, dependency, social function, and mental health

25

 ≥ 18

RLBP1 retinitis pigmentosa, Friedreich’s ataxia, myopia, hyperopia, astigmatism, nystagmus, strabismus, spinocerebellar ataxia, glaucoma

[91]

National Eye Institute Refractive Error Quality of Life Instrument—42 (NEI RQL-42)

Clarity of vision, expectations, near vision, far vision, diurnal fluctuations, activity limitations, glare, symptoms, dependence on correction, worry, suboptimal correction, appearance, and satisfaction with correction

42

 ≥ 18

Myopia, astigmatism, hyperopia

[92]

VFS-plus

Unidimensional

19

 ≥ 18

Retinitis pigmentosa

[93]

Pediatric Eye Questionnaire (PedEyeQ)

Functional vision, bothered by eyes/vision, social, frustration/worry, eye care

39–42

 < 18 (0–4; 5–11; 12–17)

Strabismus and anisometropia

[94]

Intermittent Exotropia Questionnaire (IXTQ)

Unidimensional

12

5–17 (5–7; 8–17)

Intermittent exotropia, strabismus, children wearing spectacles

[95]

Adult Strabismus Quality of Life Questionnaire (AS-20)

Psychosocial and function

20

 ≥ 18

Epiretinal membrane, nondiplopic childhood-onset strabismus, strabismus, glaucoma, diplopia

[96]

Adult Strabismus Quality of Life Questionnaire—11 item (AS-11)

Unidimensional

11

 ≥ 18

Strabismus

[97]

Low Luminance Questionnaire (LLQ)

Driving, extreme lighting, mobility, emotional distress, general dim lighting, peripheral vision

32

 ≥ 18

RLBP1 Retinitis Pigmentosa

[98]

Questionnaire on the impact of strabismus on patient quality of life based on AS-20 from Ribeiro Gde B et al., 2014

Psychosocial aspects and functional aspects

20

 > 7

Strabismus

[99]

College of Optometrists in Vision Development Quality of Life questionnaire (COVD QOL)

Somatic, physical/occupational, social, and psychological

30

 > 7

Intermittent central suppression of vision

[100]

8-question QoL live interview developed by Kothari M et al., 2009

No reference

8

4–16

Strabismus

[101]

Vision Quality of Life Questionnaire by McKeon C et al., 1997

Psychological well-being, perception of health, role functioning, physical health, visual function

32

8–46

Intermittent exotropia

[102]

Questionnaire for Evaluating Quality of Life of Pathologic Myopia Patients by Takashima T et al., 2001

Vision-related daily tasks, social handicaps, emotional handicaps, leisure and support, cognition about disease, general well-being schedule, eye satisfaction, life satisfaction

52

 ≥ 18

Myopia

[103]

Amblyopia and Strabismus Questionnaire (A&SQ)

Distance estimation, visual disorientation, fear of losing the better eye, diplopia, and social contact and cosmetic problems

26

 ≥ 18

Amblyopia, small-angle diplopia, strabismus

[104]

Quality of Life Impact of Refractive Correction (QIRC)

Visual function, health concerns, well-being, convenience issues, symptoms, economic issues and cognitive issues

20

 ≥ 16

Myopia

[105]

10-item Neuro-Ophthalmic Supplement (NOS) to the NEI-VFQ-25

Visual function and eye/lid appearance

10

 ≥ 18

Spinocerebellar ataxia

[106]

HRQOL questionnaire by Chen et al., 2015

Visual function, psychosocial impact, social interaction and worries about vision

16

7–12

Amblyopia

[107]

Disease specific questionnaire based on the study of the Joint LASIK Study Task Force (Schallhorn et al., 2016)

Patient satisfaction, effect of vision on various activities, ocular discomfort and visual phenomena

23

 ≥ 18

Post laser in situ keratomileusis intervention

[108,109,110]

Nystagmus-specific QOL questionnaire (NYS-29)

Personal and social functional and physical and environmental functional

29

 ≥ 18

Nystagmus

[111]

Quality-of-Life Scale for Myopia by Erickson et al., 2004

Tolerance of compromise/symptom, psychological states, frequency of compromise/symptom, extraversion/introversion, cosmesis

52

 ≥ 18

Myopia

[112]

Osteopenia

Short Osteoporosis Quality of Life Questionnaire (ECOS-16)

Physical functioning, illness-related fears, psychosocial functioning, and pain

16

 ≥ 18

Postmenopausal osteoporosis

[113, 114]

Osteoporosis Assessment Questionnaire—Short Version (OPAQ)

Physical function, emotional status, symptoms and social interaction

34

 ≥ 18

Postmenopausal osteoporosis

[115]

Osteoporosis-Targeted Quality of Life (OPTQoL)

Physical difficulty, adaptations and fears

32

 ≥ 18

Female osteoporosis

[116]

Osteoporosis Quality of Life Questionnaire (OQLQ)

Symptoms, physical function, activities of daily living, emotional function and leisure

30

 ≥ 18

Female osteoporosis

[117]

Mini-Osteoporosis Quality of Life Questionnaire (Mini-OQLQ)

Symptoms, physical function, activities of daily living, emotional function and leisure

10

 ≥ 18

Postmenopausal osteoporosis

[118]

Quality of Life in Osteoporosis (Qualiost)

Physical and emotional

23

 ≥ 18

Osteoporosis

[119]

Seizures

Epilepsy & Learning Disabilities Quality of Life Questionnaire (ELDQOL)

Behavior, seizure activity, mood and side effects

70

0–18

Epilepsy and learning disabilities, Dravet syndrome

[120, 121]

Quality Of Life In Epilepsy (QOLIE-10/QOLIE-10-P)

Epilepsy effects, mental health, role function

10/11

 ≥ 18

Epilepsy

[122]

Quality Of Life In Epilepsy (QOLIE-31)

Seizure worry, overall QOL, emotional wellbeing, energy/fatigue, cognitive functioning, medication effects, social functioning

31

 ≥ 18

Epilepsy

[123]

Quality of Life in Epilepsy Inventory for Adolescents (QOLIE-AD-48)

Epilepsy impact, memory-concentration, attitudes towards epilepsy, physical function, stigma, social support, school behavior, health perception

48

11–17

Epilepsy

[124]

Quality of Life in Childhood Epilepsy Questionnaire (QOLCE)

Physical restrictions, energy/fatigue, attention/concentration, memory, language, other cognitive processes, depression, anxiety, control/helplessness, self-esteem, social interactions, social activities, stigma, behaviour, general health, and quality of life

91

4–18

Epilepsy

[125]

Quality of Life in Childhood Epilepsy Questionnaire (QOLCE-55)

Cognitive, emotional, physical and social functioning

55

4–12

Epilepsy

[126]

Sleep disturbances

Insomnia Severity Index (ISI)

Initial (sleep-onset), middle (sleep maintenance), terminal (awakening), satisfaction, interference (with daily functioning), noticeability and distress

7

 ≥ 18

Insomnia

[127]

Pittsburgh Insomnia Rating Scale (PIRS)-20

Nighttime and daytime distress symptoms, sleep parameters, quality, regularity, and depth of sleep

20

 ≥ 18

Diabetes mellitus type II and insomnia

[128]

Several signs/symptoms

Cushing QoL Questionnaire (CushQoL)

Daily life, emotional, and physical aspects

12

 ≥ 18

Cushing syndrome

[129]

University of Washington Quality of Life Questionnaire (UW-QOL)

Pain, appearance, activity, recreation, swallowing, chewing, speech, shoulder, taste, saliva, mood and anxiety

12

 ≥ 18

Head and neck cancer

[130]

University of California Los Angeles Prostate Cancer Index (UCLA-PCI)

Urinary, sexual and bowel function, urinary, sexual and bowel bother

20

 ≥ 18

Early state of prostate cancer

[131]