Measures functional status, well-being, and overall health
Number of Items/Questions
36
Key Publications
Brazier JE, Harper R, Jones NM, O'Cathain A, Thomas KJ, Usherwood T, Westlake L. Validating the SF-36 health survey questionnaire: new outcome measure for primary care. BMJ. 1992 Jul 18;305(6846):160-4. doi: 10.1136/bmj.305.6846.160. PMID: 1285753; PMCID: PMC1883187. Link to Pubmed
Measures emotions, pain, energy level, social integration, physical mobility, and sleep pattern aspects
Number of Items/Questions
38
Key Publications
Salek MS, Khan GK , Finlay AY. Questionnaire techniques in assessing acne handicap: reliability and validity study. Qual Life Res 1996;5:131-8. Link to Pubmed
Gregory JJ, Werth PM, Reilly CA, Jevsevar DS. Cross-specialty PROMIS-global health differential item functioning. Qual Life Res. 2021 Aug;30(8):2339-2348. doi: 10.1007/s11136-021-02812-6. Epub 2021 Mar 16. PMID: 33725333. Link to Pubmed
◉ World Health Organization Quality of Life (WHOQOL)-26
Overview
Overall quality of life measure assessing general health, physical health, psychological health, social relations, and environment.
Number of Items/Questions
26
Key Publications
Skevington SM, Lotfy M, O'Connell KA; WHOQOL Group. The World Health Organization's WHOQOL-BREF quality of life assessment: psychometric properties and results of the international field trial. A report from the WHOQOL group. Qual Life Res. 2004 Mar;13(2):299-310. doi: 10.1023/B:QURE.0000018486.91360.00. PMID: 15085902. Link to Pubmed
Measures impact of any skin disease on daily life, and assesses symptoms, feelings, daily activities, leisure, work/school, relationships/sex, and treatment effects
Number of Items/Questions
10
Key Publications
Finlay AY, Khan GK. Dermatology Life Quality Index (DLQI)--a simple practical measure for routine clinical use. Clin Exp Dermatol. 1994 May;19(3):210-6. doi: 10.1111/j.1365-2230.1994.tb01167.x. PMID: 8033378. Link to Pubmed
◉ Childrens’ Dermatology Quality of Life Index (CDLQI)
Overview
Similar to DLQI, but asks about bullying and school impact, removes question about sex
Number of Items/Questions
10
Key Publications
Holme SA, Man I, Sharpe JL, Dykes PJ, Lewis-Jones MS, Finlay AY. The Children's Dermatology Life Quality Index: validation of the cartoon version. Br J Dermatol. 2003 Feb;148(2):285-90. doi: 10.1046/j.1365-2133.2003.05157.x. PMID: 12588381. Link to Pubmed
Comprehensive measure of effects of skin disease on 3 domains: emotional, symptoms, and physical functioning. Most common Skindex version in clinical use.
Chren MM, Lasek RJ, Sahay AP, Sands LP. Measurement properties of Skindex-16: a brief quality-of-life measure for patients with skin diseases. J Cutan Med Surg. 2001 Mar-Apr;5(2):105-10. doi: 10.1007/BF02737863. Epub 2001 Mar 21. PMID: 11443481. Link to Pubmed
How to Gain Access
A copy of each measure can be reviewed to determine suitability. Fees vary by use. For individual clinical applications, these may be used for free after requesting a license from ePROVIDE. Separate licenses exist for Skindex-16 and Skindex-29. https://eprovide.mapi-trust.org/instruments/skindex
◉ Skindex-29
Overview
Comprehensive measure of effects of skin disease on 3 domains: emotional, symptoms, and physical functioning. Most common Skindex version in research/clinical trials.
Number of Items/Questions
29
Key Publications
Chren MM, Lasek RJ, Flocke SA, Zyzanski SJ. Improved discriminative and evaluative capability of a refined version of Skindex, a quality-of-life instrument for patients with skin diseases. Arch Dermatol. 1997 Nov;133(11):1433-40. PMID: 9371029. Link to Pubmed
How to Gain Access
A copy of each measure can be reviewed to determine suitability. Fees vary by use. For individual clinical applications, these may be used for free after requesting a license from ePROVIDE. Separate licenses exist for Skindex-16 and Skindex-29. https://eprovide.mapi-trust.org/instruments/skindex
◉ Skindex-Mini
Overview
Measure of effects of skin disease on 3 domains using only 3 questions: emotional, symptoms, and physical functioning
Number of Items/Questions
3
Key Publications
Swerlick RA, Zhang C, Patel A, Chren MM, Chen S. The Skindex-Mini: A streamlined quality of life measurement tool suitable for routine use in clinic. J Am Acad Dermatol. 2021 Aug;85(2):510-512. doi: 10.1016/j.jaad.2018.12.035. Epub 2018 Dec 25. PMID: 30590072. Link to Pubmed
How to Gain Access
A copy can be reviewed to determine suitability. Fees vary by use. For individual clinical applications, this may be used for free after requesting a license from ePROVIDE. https://eprovide.mapi-trust.org/instruments/skindex-mini
◉ Family Dermatology Life Quality Index (FDLQI)
Overview
Measures impact of any skin disease on the adult family members' mental health, social health, effect on job/relationship, treatment costs, and assistance with managing the skin disease
Number of Items/Questions
10
Key Publications
Basra MK, Sue-Ho R, Finlay AY. The Family Dermatology Life Quality Index: measuring the secondary impact of skin disease. Br J Dermatol. 2007 Mar;156(3):528-38. doi: 10.1111/j.1365-2133.2006.07617.x. Erratum in: Br J Dermatol. 2007 Apr;156(4):791. PMID: 17300244. Link to Pubmed
Assesses the impact of pruritus on HRQL by looking at symptoms, functional limitations, and emotions.
Number of Items/Questions
22
Key Publications
Desai NS, Poindexter GB, Monthrope YM, Bendeck SE, Swerlick RA, Chen SC. A pilot quality-of-life instrument for pruritus. J Am Acad Dermatol. 2008 Aug;59(2):234-44. Link to Pubmed
How to Gain Access
A license must be obtained from Emory University before use. License fees vary by purpose and usage.
◉ PROMIS Checklist v1.0–Itch-Quality
Overview
Checklist about itch sensation
Number of Items/Questions
16
Key Publications
Silverberg JI, Lai JS, Kantor RW, Dalal P, Hickey C, Shaunfield S, Kaiser K, Correia H, Cella D. Development, Validation, and Interpretation of the PROMIS Itch Questionnaire: A Patient-Reported Outcome Measure for the Quality of Life Impact of Itch. J Invest Dermatol. 2020 May;140(5):986-994.e6. Link to Pubmed
How to Gain Access
Download for free from HealthMeasures’ repository.
◉ PROMIS Item Pool v1.0–Itch-Severity
Overview
Assesses intensity, frequency, and time of occurrence of itch.
Number of Items/Questions
8
Key Publications
Silverberg JI, Lai JS, Kantor RW, Dalal P, Hickey C, Shaunfield S, Kaiser K, Correia H, Cella D. Development, Validation, and Interpretation of the PROMIS Itch Questionnaire: A Patient-Reported Outcome Measure for the Quality of Life Impact of Itch. J Invest Dermatol. 2020 May;140(5):986-994.e6. Link to Pubmed
How to Gain Access
Download for free from HealthMeasures’ repository.
>Mental health
◉ PROMIS Short Form v1.0–Depression 4a
Overview
Assesses symptoms of depression, excluding somatic symptoms like sleeping patterns.
Number of Items/Questions
4
Key Publications
Pilkonis PA, Choi SW, Reise SP, Stover AM, Riley WT, Cella D; PROMIS Cooperative Group. Item banks for measuring emotional distress from the Patient-Reported Outcomes Measurement Information System (PROMIS®): depression, anxiety, and anger. Assessment. 2011 Sep;18(3):263-83. Link to Pubmed
How to Gain Access
Download for free from HealthMeasures’ repository.
◉ PROMIS Short Form v2.0–Social Isolation 6a
Overview
“[A]ssesses perceptions of being avoided, excluded, detached, disconnected from, or unknown by, others”(July 8, 2015)
Number of Items/Questions
6
Key Publications
Hahn EA, DeWalt DA, Bode RK, Garcia SF, DeVellis RF, Correia H, Cella D; PROMIS Cooperative Group. New English and Spanish social health measures will facilitate evaluating health determinants. Health Psychol. 2014 May;33(5):490-9. Link to Pubmed
How to Gain Access
Download for free from HealthMeasures’ repository.
>Pain
◉ PROMIS Short Form v1.0–Pain Interference 8a
Overview
Assesses impact of pain on the patient’s life.
Number of Items/Questions
8
Key Publications
Amtmann D, Cook KF, Jensen MP, Chen WH, Choi S, Revicki D, Cella D, Rothrock N, Keefe F, Callahan L, Lai JS. Development of a PROMIS item bank to measure pain interference. Pain. 2010 Jul;150(1):173-182. Link to Pubmed
How to Gain Access
Download for free from HealthMeasures’ repository.
>Sleep disturbance
◉ PROMIS Bank v1.0–Sleep-Related Impairment
Overview
Item bank for computer-assisted testing (CAT); short forms and custom forms on sleep-related impairment also available.
Number of Items/Questions
16
Key Publications
Yu L, Buysse DJ, Germain A, Moul DE, Stover A, Dodds NE, Johnston KL, Pilkonis PA. Development of short forms from the PROMIS™ sleep disturbance and Sleep-Related Impairment item banks. Behav Sleep Med. 2011 Dec 28;10(1):6-24. Link to Pubmed
How to Gain Access
Download for free from HealthMeasures’ repository.
Disease-specific PROs
Popular PROs are colored salmon
>Acne
◉ Acne-Specific Quality of Life (Acne-QoL)
Overview
Assesses HRQL with facial acne in the domains of self-perception, social, emotional, and acne symptoms
Number of Items/Questions
19
Key Publications
Girman CJ, Hartmaier S, Thiboutot D, et al. Evaluating health-related quality of life in patients with facial acne: development of a self-administered questionnaire for clinical trials. Qual Life Res 1996;5: 481-90. Link to Pubmed
Assesses acne severe and the psychosocial effects of acne
Number of Items/Questions
9
Key Publications
Gupta MA, Johnson AM , Gupta AK. The development of an Acne Quality of Life scale: reliability, validity, and relation to subjective acne severity in mild to moderate acne vulgaris. Acta Derm Venereol 1998;78:451-6. Link to Pubmed
How to Gain Access
Must contact authors before using or translating the questionnaire.
◉ Cardiff Acne Disability Index (CADI)
Overview
Brief assessment of the emotional, social and physical effects of acne and a patient’s self-evaluation of severity
Number of Items/Questions
5
Key Publications
Salek MS, Khan GK , Finlay AY. Questionnaire techniques in assessing acne handicap: reliability and validity study. Qual Life Res 1996;5:131-8. Link to Pubmed
Assesses how facial acne affects both symptoms and psychosocial impacts
Number of Items/Questions
17
Key Publications
Hudgens S, Harper JC, Daniels SR, Banderas B, Varon S , Alexis AF. Validation of a New Patient-Reported Outcome Measure for Facial Acne: The Acne Symptom and Impact Scale (ASIS). J Drugs Dermatol 2015;14:552-9. Link to Pubmed
How to Gain Access
Must contact authors before using or translating the questionnaire.
◉ Acne Disability Index (ADI)
Overview
Assessment of the emotional, social and physical effects of acne and a patient’s self-evaluation of severity
Number of Items/Questions
10
Key Publications
Motley RJ , Finlay AY. How much disability is caused by acne? Clin Exp Dermatol 1989;14:194-8. Link to Pubmed
◉ Comprehensive Acne Quality of Life Scale (CompAQ) and CompAQ-SF
Overview
Assesses facial and truncal acne’s effects on five domains: psychological/emotional, social (judgement from others), social interactions, treatment concerns, physical symptoms
Number of Items/Questions
20; 5(SF)
Key Publications
McLellan C, Frey MP, Thiboutot D, Layton A, Chren MM , Tan J. Development of a Comprehensive Quality-of-Life Measure for Facial and Torso Acne. J Cutan Med Surg 2018;22:304-11. Link to Pubmed
How to Gain Access
Must contact authors before using or translating the questionnaire.
◉ Facial Acne Scar Quality of Life (FASQoL)
Overview
Assesses the effects of facial acne scars on emotions and social functioning as well as work/school performance
Number of Items/Questions
10
Key Publications
Layton A, Dréno B, Finlay AY, Thiboutot D, Kang S, Lozada VT et al. New Patient-Oriented Tools for Assessing Atrophic Acne Scarring. Dermatol Ther (Heidelb) 2016;6:219-33. Link to Pubmed
How to Gain Access
Must contact authors before using or translating the questionnaire.
◉ AcneQ4
Overview
Condensed version of Acne-QoL. Assesses HRQL with facial acne in the domains of self-perception, social, emotional, and acne symptoms
Number of Items/Questions
4
Key Publications
Tan J, Fung KY , Khan S. Condensation and validation of a 4-item index of the Acne-QoL. Qual Life Res 2006;15:1203-10. Link to Pubmed
How to Gain Access
Must contact authors before using or translating the questionnaire.
◉ Acne-Q
Overview
Assesses how both facial and truncal acne affect HRQL, incorporating treatments and scarring
Number of Items/Questions
73
Key Publications
Klassen AF, Lipner S, O'Malley M, Longmire NM, Cano SJ, Breitkopf T et al. Development of a new patient-reported outcome measure to evaluate treatments for acne and acne scarring: the ACNE-Q. Br J Dermatol 2019;181:1207-15. Link to Pubmed
Assesses quality of life by measuring the “most relevant domains of functioning affected by acne”
Number of Items/Questions
21
Key Publications
Rapp SR, Feldman SR, Graham G, Fleischer AB, Brenes G , Dailey M. The Acne Quality of Life Index (Acne-QOLI): development and validation of a brief instrument. Am J Clin Dermatol 2006;7:185-92. Link to Pubmed
How to Gain Access
Must contact authors before using or translating the questionnaire.
>Actinic Keratosis
◉ Actinic Keratosis Quality of Life (AKQoL)
Overview
Assesses domains of function, emotions, and control and a global item
Number of Items/Questions
9
Key Publications
Esmann S, Vinding GR, Christensen KB , Jemec GBE. Assessing the influence of actinic keratosis on patients’ quality of life: the AKQoL questionnaire. Br J Dermatol 2013;168:277-83. Link to Pubmed
How to Gain Access
See Supporting Information for this article. Need authors’ permission to use.
>Alopecia
◉ Hairdex
Overview
General hair loss tool exploring function, emotions, symptoms, self-assurance, and stigmatization
Number of Items/Questions
48
Key Publications
Fischer TW, Schmidt S, Strauss B , Elsner P. [Hairdex: a tool for evaluation of disease-specific quality of life in patients with hair diseases]. Hautarzt 2001;52:219-27. Link to Pubmed
How to Gain Access
Must contact authors before using or translating the questionnaire.
◉ Hair-Specific Skindex-29
Overview
Assesses function, emotions, and symptoms based on Skindex-29
Number of Items/Questions
29
Key Publications
Han SH, Byun JW, Lee WS, Kang H, Kye YC, Kim KH et al. Quality of life assessment in male patients with androgenetic alopecia: result of a prospective, multicenter study. Ann Dermatol 2012;24:311-8. Link to Pubmed
How to Gain Access
Must contact authors before using or translating the questionnaire.
◉ Women’s Androgenetic Alopecia Quality of Life Questionnaire (WAA-QOL)
Overview
Assesses domains of function, emotions, and control and a global item
Number of Items/Questions
16
Key Publications
Dolte KS, Girman CJ, Hartmaier S, Roberts J, Bergfeld W , Waldstreicher J. Development of a health-related quality of life questionnaire for women with androgenetic alopecia. Clin Exp Dermatol 2000;25:637-42. Link to Pubmed
Assesses domains of function, emotions, and control and a global item
Number of Items/Questions
7
Key Publications
Barber B, Kaufman K, Kozloff R, Girman C , Guess H. A hair growth questionnaire for use in the evaluation of therapeutic effects in men. J Dermatol Treat 1998;9:181-6. Link to Pubmed
Assesses domains of function, emotions, and control and a global item
Number of Items/Questions
4
Key Publications
Harness J MC, Olsen E, Price V. The women’s hair growth questionnaire: development and validation of a patient-reported measure for treatment efficacy in androgenetic alopecia. J Am Acad Dermatol 2009;60:AB100. Link to Pubmed
A disease-specific measure that asks about symptoms and how these symptoms interfere with daily functioning
Number of Items/Questions
13
Key Publications
Mendoza TR, Osei JS, Shi Q , Duvic M. Development of the alopecia areata symptom impact scale. J Investig Dermatol Symp Proc 2013;16:S51-2. Link to Pubmed
A disease-specific assessment examining effects on relationships, subjective symptoms, and objective signs
Number of Items/Questions
21
Key Publications
Fabbrocini G, Panariello L, De Vita V, Vincenzi C, Lauro C, Nappo D et al. Quality of life in alopecia areata: a disease-specific questionnaire. J Eur Acad Dermatol Venereol 2013;27:e276-81. Link to Pubmed
How to Gain Access
Must contact authors before using or translating the questionnaire.
◉ Alopecia Areata Patients' Quality of Life (AAQ)
Overview
A disease-specific assessment quantifying the effect of alopecia areata in three areas: restriction of activity, concealment, and adaptation
Number of Items/Questions
7
Key Publications
Endo Y, Miyachi Y , Arakawa A. Development of a disease-specific instrument to measure quality of life in patients with alopecia areata. Eur J Dermatol 2012;22:531-6. Link to Pubmed
How to Gain Access
Must contact authors before using or translating the questionnaire.
>Angioedema
◉ Angioedema Quality of Life (AE-QoL)
Overview
Domains of functioning, fatigue/mood, fear/shame, and food
Number of Items/Questions
17
Key Publications
Weller K, Magerl M, Peveling-Oberhag A, Martus P, Staubach P , Maurer M. The Angioedema Quality of Life Questionnaire (AE-QoL) – assessment of sensitivity to change and minimal clinically important difference. Allergy 2016;71:1203-9. Link to Pubmed
How to Gain Access
Must contact authors before using or translating the questionnaire.
◉ Angioedema Control Test (AECT)
Overview
Assesses disease control in patients with recurrent angioedema
Number of Items/Questions
4
Key Publications
Weller K, Donoso T, Magerl M, Aygören-Pürsün E, Staubach P, Martinez-Saguer I et al. Development of the Angioedema Control Test-A patient-reported outcome measure that assesses disease control in patients with recurrent angioedema. Allergy 2020;75:1165-77. Link to Pubmed
Determines disease activity in recurrent angioedema
Number of Items/Questions
5
Key Publications
Weller K, Groffik A, Magerl M, Tohme N, Martus P, Krause K et al. Development, validation, and initial results of the Angioedema Activity Score. Allergy 2013;68:1185-92. Link to Pubmed
Monitors atopic eczema severity as experienced by the patient
Number of Items/Questions
7
Key Publications
Charman CR, Venn AJ, Williams HC. The patient-oriented eczema measure: development and initial validation of a new tool for measuring atopic eczema severity from the patients' perspective. Arch Dermatol. 2004 Dec;140(12):1513-9. doi: 10.1001/archderm.140.12.1513. Erratum in: Arch Dermatol. 2005 Mar;141(3):381. PMID: 15611432. Link to Pubmed
Developed from SCORing Atopic Dermatitis (SCORAD) index for patient self-assessment of atopic eczema
Number of Items/Questions
10
Key Publications
Stalder JF, Barbarot S, Wollenberg A, Holm EA, De Raeve L, Seidenari S, Oranje A, Deleuran M, Cambazard F, Svensson A, Simon D, Benfeldt E, Reunala T, Mazereeuv J, Boralevi F, Kunz B, Misery L, Mortz CG, Darsow U, Gelmetti C, Diepgen T, Ring J, Moehrenschlager M, Gieler U, Taïeb A; PO-SCORAD Investigators Group. Patient-Oriented SCORAD (PO-SCORAD): a new self-assessment scale in atopic dermatitis validated in Europe. Allergy. 2011 Aug;66(8):1114-21. doi: 10.1111/j.1398-9995.2011.02577.x. Epub 2011 Mar 18. PMID: 21414011. Link to Pubmed
Assessment of both child dimensions (symptoms, activity limitation) and parent dimensions (family/social function, sleep, and emotions)
Number of Items/Questions
45
Key Publications
Chamlin SL, Cella D, Frieden IJ, Williams ML, Mancini AJ, Lai JS et al. Development of the Childhood Atopic Dermatitis Impact Scale: initial validation of a quality-of-life measure for young children with atopic dermatitis and their families. J Invest Dermatol 2005;125:1106-11. Link to Pubmed
How to Gain Access
Must contact authors before using or translating the questionnaire.
◉ Parents' Index of Quality of Life in Atopic Dermatitis (PIQoL-AD)
Overview
Internationally developed tool to assess parental QOL when raising a child with atopic dermatitis
Number of Items/Questions
28
Key Publications
McKenna SP, Whalley D, Dewar AL, Erdman RA, Kohlmann T, Niero M et al. International development of the Parents' Index of Quality of Life in Atopic Dermatitis (PIQoL-AD). Qual Life Res 2005;14:231-41. Link to Pubmed
◉ Quality of Life Index for Atopic Dermatitis (QoLIAD)
Overview
Assesses several areas affected by AD: mental/emotional health, sharing/belonging, self-esteem, personal development, fulfillment
Number of Items/Questions
25
Key Publications
Whalley D, McKenna SP, Dewar AL, Erdman RA, Kohlmann T, Niero M et al. A new instrument for assessing quality of life in atopic dermatitis: international development of the Quality of Life Index for Atopic Dermatitis (QoLIAD). Br J Dermatol 2004;150:274-83. Link to Pubmed
Evaluates the psychosocial, symptoms and functional domains on HRQL in those with autoimmune bullous disease
Number of Items/Questions
17
Key Publications
Sebaratnam DF, Hanna AM, Chee SN, Frew JW, Venugopal SS, Daniel BS et al. Development of a quality-of-life instrument for autoimmune bullous disease: the Autoimmune Bullous Disease Quality of Life questionnaire. JAMA Dermatol 2013;149:1186-91. Link to Pubmed
How to Gain Access
Must contact authors before using or translating the questionnaire.
◉ Treatment for Autoimmune Bullous Quality of Life (TABQOL)
Overview
Evaluates the effects of treatment for autoimmune bullous disease on psychosocial, symptoms and functional domains of HRQL
Number of Items/Questions
17
Key Publications
Tjokrowidjaja A, Daniel BS, Frew JW, Sebaratnam DF, Hanna AM, Chee S et al. The development and validation of the treatment of autoimmune bullous disease quality of life questionnaire, a tool to measure the quality of life impacts of treatments used in patients with autoimmune blistering disease. Br J Dermatol 2013;169:1000-6. Link to Pubmed
How to Gain Access
Must contact authors before using or translating the questionnaire.
>Cutaneous lupus erythematosus
◉ Cutaneous Lupus Erythematosus Quality of Life (CLEQoL)
Overview
A tool for the QOL impact of skin-specific issues that combines the Skindex-29 with 3 lupus-specific questions (photosensitivity, alopecia) and 4 pigmentary questions from VitiQoL)
Number of Items/Questions
36
Key Publications
Ogunsanya ME, Cho SK, Hudson A , Chong BF. Validation and reliability of a disease-specific quality-of-life measure in patients with cutaneous lupus erythematosus. Br J Dermatol 2019;180:1430-7. Link to Pubmed
A HRQL measure over seven dimensions (treatment difficulties, physical functioning, stigma, emotional/social effect, concern about offspring, perceived control over illness, mental health)
Number of Items/Questions
25
Key Publications
Prior N, Remor E, Pérez-Fernández E, Caminoa M, Gómez-Traseira C, Gayá F et al. Psychometric Field Study of Hereditary Angioedema Quality of Life Questionnaire for Adults: HAE-QoL. J Allergy Clin Immunol Pract 2016;4:464-73.e4. Link to Pubmed
How to Gain Access
Must contact authors before using or translating the questionnaire.
>Hidradenitis suppurativa
◉ HIDRAdisk
Overview
A visual disk to measure quality of life rapidly across ten domains to be used clinically to foster patient-clinician discussion
Number of Items/Questions
10
Key Publications
Marzano AV, Chiricozzi A, Giovanardi G, Argenziano G, Bettoli V, Bianchi L et al. Creation of a severity index for hidradenitis suppurativa that includes a validated quality-of-life measure: the HIDRAscore. J Eur Acad Dermatol Venereol 2020;34:1815-21. Link to Pubmed
How to Gain Access
Must contact authors before using or translating the questionnaire.
◉ Hidradenitis Suppurativa Quality of Life (HiSQOL)
Overview
A tool developed for clinical trials assessing quality of life related to symptoms, psychosocial and activities/adaptations
Number of Items/Questions
17
Key Publications
Kirby JS, Thorlacius L, Villumsen B, Ingram JR, Garg A, Christensen KB et al. The Hidradenitis Suppurativa Quality of Life (HiSQOL) score: development and validation of a measure for clinical trials. Br J Dermatol 2020;183:340-8. Link to Pubmed
How to Gain Access
Must contact authors before using or translating the questionnaire.
◉ Hidradenitis Suppurativa Quality of Life 24 (HSQoL-24)
Overview
A multidimensional assessment of quality of life on symptoms, emotions, functioning, and treatment (validated in Spanish initially)
Number of Items/Questions
24
Key Publications
Marrón SE, Gómez-Barrera M, Tomás-Aragonés L, Díaz Díaz RM, Vilarrasa Rull E, Madrid Álvarez MB et al. Development and Preliminary Validation of the HSQoL-24 Tool to Assess Quality of Life in Patients With Hidradenitis Suppurativa. Actas Dermosifiliogr (Engl Ed) 2019;110:554-60. Link to Pubmed
How to Gain Access
Must contact authors before using or translating the questionnaire.
A hidradenitis-specific measure that evaluates the various impacts of HS on quality of life for treatment efficacy studies
Number of Items/Questions
17
Key Publications
Kimball AB, Sundaram M, Banderas B, Foley C , Shields AL. Development and initial psychometric evaluation of patient-reported outcome questionnaires to evaluate the symptoms and impact of hidradenitis suppurativa. J Dermatolog Treat 2018;29:152-64. Link to Pubmed
◉ Hidradenitis Suppurativa Quality of Life (HS-QoL)
Overview
A hidradenitis-specific measure that assesses quality of life effects on seven different subscales
Number of Items/Questions
44
Key Publications
McLellan C, Sisic M, Oon HH , Tan J. Preliminary Validation of the HS-QoL: A Quality-of-Life Measure for Hidradenitis Suppurativa. J Cutan Med Surg 2018;22:142-6. Link to Pubmed
How to Gain Access
Must contact authors before using or translating the questionnaire.
A hidradenitis-specific measure that quantifies symptom severity and its impact on quality of life for treatment efficacy studies
Number of Items/Questions
9
Key Publications
Kimball AB, Sundaram M, Banderas B, Foley C , Shields AL. Development and initial psychometric evaluation of patient-reported outcome questionnaires to evaluate the symptoms and impact of hidradenitis suppurativa. J Dermatolog Treat 2018;29:152-64. Link to Pubmed
Must contact authors before using or translating the questionnaire.
>Mastocytosis
◉ Mastocytosis Quality of Life (MC-QoL)
Overview
A quality of life measure assessing hyperhidrosis’ effect on two subscales, daily life activities and psychosocial life domains
Number of Items/Questions
27
Key Publications
Siebenhaar F, von Tschirnhaus E, Hartmann K, Rabenhorst A, Staubach P, Peveling-Oberhag A et al. Development and validation of the mastocytosis quality of life questionnaire: MC-QoL. Allergy 2016;71:869-77. Link to Pubmed
◉ Mastocytosis Quality of Life Questionnaire (MQLQ)
Overview
A tool for assessing HRQL across eight domains, ranging from physical and mental health to treatment effects and worries
Number of Items/Questions
49
Key Publications
van Anrooij B, Kluin-Nelemans JC, Safy M, Flokstra-de Blok BM , Oude Elberink JN. Patient-reported disease-specific quality-of-life and symptom severity in systemic mastocytosis. Allergy 2016;71:1585-93. Link to Pubmed
How to Gain Access
Must contact authors before using or translating the questionnaire.
◉ Mastocytosis Symptom Assessment Form (MSAF)
Overview
A measure to score mastocytosis-specific symptom severity as well as the effects of fatigue on functioning
Number of Items/Questions
20
Key Publications
van Anrooij B, Kluin-Nelemans JC, Safy M, Flokstra-de Blok BM , Oude Elberink JN. Patient-reported disease-specific quality-of-life and symptom severity in systemic mastocytosis. Allergy 2016;71:1585-93. Link to Pubmed
How to Gain Access
Must contact authors before using or translating the questionnaire.
>Onychomycosis
◉ Quality of Life Questionnaire Onychomycosis (Nail fungal condition) (OnyCOE-t™)
Overview
Psychometrically validated tool to explore quality of life related to symptoms, appearance, stigma and effects on physical activities and treatment for toenail fungus.
Number of Items/Questions
33
Key Publications
Potter LP, Mathias SD, Raut M, Kianifard F, Tavakkol A. The OnyCOE-t questionnaire: responsiveness and clinical meaningfulness of a patient-reported outcomes questionnaire for toenail onychomycosis. Health Qual Life Outcomes. 2006 Aug 15;4:50 Link to Pubmed
◉ Onychomycosis Quality of Life questionnaire (ONYCHO)
Overview
Validated questionnaire assessing the social, emotional, and symptoms effects on quality of life caused by either fingernail or toenail onychomycosis. Short forms (SF) and long forms (LF) available.
Number of Items/Questions
Fingernail SF (24); Toenail SF (17); Fingernail LF (60); Toenail LF (32)
Key Publications
Drake LA, Patrick DL, Fleckman P, Andr J, Baran R, Haneke E, Sapède C, Tosti A. The impact of onychomycosis on quality of life: development of an international onychomycosis-specific questionnaire to measure patient quality of life. J Am Acad Dermatol. 1999 Aug;41(2 Pt 1):189-96. Link to Pubmed
An early psoriasis-specific tool with two subscales: 1) effects on daily activities and 2) effects on emotions and social situations
Number of Items/Questions
19
Key Publications
Finlay AY, Khan GK, Luscombe DK , Salek MS. Validation of Sickness Impact Profile and Psoriasis Disability Index in Psoriasis. Br J Dermatol 1990;123:751-6. Link to Pubmed
◉ Koo Menter Psoriasis Instrument (KMPI or PQOL-12)
Overview
An instrument that evaluates quality of life in 12 questions as well as additional questions about extent of skin involvement and joint disease
Number of Items/Questions
12
Key Publications
Feldman SR, Koo JY, Menter A , Bagel J. Decision points for the initiation of systemic treatment for psoriasis. J Am Acad Dermatol 2005;53:101-7. Link to Pubmed
A measure exploring the effects of psoriasis on both physical and mental stressors and coping behaviors
Number of Items/Questions
15
Key Publications
Gupta MA , Gupta AK. The Psoriasis Life Stress Inventory: a preliminary index of psoriasis-related stress. Acta Derm Venereol 1995;75:240-3. Link to Pubmed
A 10-item visual aid for clinical evaluation and discussion of the quality of life effects of psoriasis
Number of Items/Questions
10
Key Publications
Linder D, Sampogna F, Torreggiani A, Balato N, Bianchi L, Cassano N et al. Psodisk, a new visual method for assessing the burden of psoriasis on patients. J Eur Acad Dermatol Venereol 2012;26:1163-6. Link to Pubmed
How to Gain Access
Must contact authors before using or translating the questionnaire.
◉ Psoriasis Index of Quality of Life (PSORIQoL)
Overview
A tool to assess self-confidence, social issues, physical intimacy, sleep and emotional stability related to psoriasis
Number of Items/Questions
25
Key Publications
McKenna SP, Cook SA, Whalley D, Doward LC, Richards HL, Griffiths CE et al. Development of the PSORIQoL, a psoriasis-specific measure of quality of life designed for use in clinical practice and trials. Br J Dermatol 2003;149:323-31. Link to Pubmed
A nail psoriasis-specific assessment to quantify the impact on symptoms, daily activities and emotional disruption
Number of Items/Questions
10
Key Publications
Ortonne JP, Baran R, Corvest M, Schmitt C, Voisard JJ , Taieb C. Development and validation of nail psoriasis quality of life scale (NPQ10). J Eur Acad Dermatol Venereol 2010;24:22-7. Link to Pubmed
How to Gain Access
Must contact authors before using or translating the questionnaire.
◉ Nail Assessment in Psoriasis and Psoriatic Arthritis Quality of Life (NAPPA-QoL)
Overview
A nail psoriasis-specific assessment of the effects on signs, stigma emotions and daily activities on quality of life
Number of Items/Questions
20
Key Publications
Augustin M, Blome C, Costanzo A, Dauden E, Ferrandiz C, Girolomoni G et al. Nail Assessment in Psoriasis and Psoriatic Arthritis (NAPPA): development and validation of a tool for assessment of nail psoriasis outcomes. Br J Dermatol 2014;170:591-8. Link to Pubmed
A refined version of an original 16-item questionnaire assessing mental functioning, mental wellbeing and stigmatization
Number of Items/Questions
11
Key Publications
Nijsten T, Unaeze J , Stern RS. Refinement and reduction of the Impact of Psoriasis Questionnaire: classical test theory vs. Rasch analysis. Br J Dermatol 2006;154:692-700. Link to Pubmed
How to Gain Access
Must contact authors before using or translating the questionnaire.
◉ Psoriasis Quality of Life Questionnaire (PQLQ)
Overview
A tool to assess the impacts of psychological, social and physical complications from psoriasis on quality of life
Number of Items/Questions
17
Key Publications
Inanir I, Aydemir O, Gündüz K, Danaci AE , Türel A. Developing a quality of life instrument in patients with psoriasis: the Psoriasis Quality of Life Questionnaire (PQLQ). Int J Dermatol 2006;45:234-8. Link to Pubmed
How to Gain Access
Must contact authors before using or translating the questionnaire.
◉ Comprehensive Appraisal of Life Impact of Psoriasis (CALIPSO)
Overview
A psoriasis-specific measure that assesses symptoms, emotions, and functioning as well as treatment and coping behaviors
Number of Items/Questions
30
Key Publications
Sampogna F, Styles I, Tabolli S , Abeni D. Measuring quality of life in psoriasis: the CALIPSO questionnaire. Eur J Dermatol 2011;21:67-78. Link to Pubmed
How to Gain Access
Must contact authors before using or translating the questionnaire.
>Rosacea
◉ Rosacea Quality of Life Index (RosaQoL)
Overview
A rosacea-specific measure that assesses symptoms, functioning, and emotions
Number of Items/Questions
21
Key Publications
Nicholson K, Abramova L, Chren MM, Yeung J, Chon SY, Chen SC. A pilot quality-of-life instrument for acne rosacea. J Am Acad Dermatol. 2007 Aug;57(2):213-21. doi: 10.1016/j.jaad.2007.01.048. Epub 2007 Apr 18. PMID: 17445948. Link to Pubmed
◉ Patient Scale of the Patient and Observer Scar Assessment Scale (POSAS)
Overview
A two-component assessment scale by patients and clinicians, asking about symptoms and appearance of all scars (surgical, burns, keloids)
Number of Items/Questions
6
Key Publications
van der Wal MB, Tuinebreijer WE, Bloemen MC, Verhaegen PD, Middelkoop E , van Zuijlen PP. Rasch analysis of the Patient and Observer Scar Assessment Scale (POSAS) in burn scars. Qual Life Res 2012;21:13-23. Link to Pubmed
A tool to assess QOL impact of auricular keloids, specifically, in 4 areas: general health, physical symptoms, self-esteem, and social impact
Number of Items/Questions
21
Key Publications
Häussler D, Hüttemann S, Weiß C, Rotter NK , Sadick H. The Keloid Intervention Benefit Inventory 21: A New Assessment Tool for the Quality of Life of Patients with Auricular Keloids. Facial Plast Surg 2021;37:370-5. Link to Pubmed
How to Gain Access
Must contact authors before using or translating the questionnaire.
>Scleroderma
◉ Scleroderma Health Assessment Questionnaire (SHAQ)
Overview
Validated tool to assess disease status and changes in disease status over time across several domains in patients with systemic sclerosis.
Number of Items/Questions
30
Key Publications
Poole JL, Steen VD. The use of the Health Assessment Questionnaire (HAQ) to determine physical disability in systemic sclerosis. Arthritis Care Res. 1991 Mar;4(1):27-31. Link to Pubmed
◉ Localized Scleroderma Quality of Life Instrument (LoSQI)
Overview
Assesses the health-related quality of life in children and adolescents with localized scleroderma emotionally, symptomatically, functionally and related to medications.
Number of Items/Questions
33
Key Publications
Zigler CK, Ardalan K, Hernandez A, Caliendo AE, Magee KE, Terry MA, Mann CM, Torok KS. Exploring the impact of paediatric localized scleroderma on health-related quality of life: focus groups with youth and caregivers. Br J Dermatol. 2020 Oct;183(4):692-701. Link to Pubmed
Assesses impact of skin cancer and treatment; emotional, social, and appearance subscales
Number of Items/Questions
15
Key Publications
Rhee JS, Matthews BA, Neuburg M, Logan BR, Burzynski M , Nattinger AB. The skin cancer index: clinical responsiveness and predictors of quality of life. Laryngoscope 2007;117:399-405. Link to Pubmed
How to Gain Access
Free to use from original article. No permission/license is needed.
◉ FACE-Q Skin Cancer Module
Overview
Measures five scales: 1) appearance satisfaction, 2) scar appearance, 3) cancer worry, 4) psychosocial distress, 5) satisfaction with outcome
Number of Items/Questions
41
Key Publications
Lee EH, Klassen AF, Cano SJ, Nehal KS , Pusic AL. FACE-Q Skin Cancer Module for measuring patient-reported outcomes following facial skin cancer surgery. Br J Dermatol 2018;179:88-94. Link to Pubmed
◉ Functional Assessment of Cancer Therapy-Melanoma (FACT-M) Questionnaire
Overview
Comprised of FACT-General plus 3 melanoma-specific QOL domains: 1) physical well-being, 2) emotional well-being, 3) social well-being
Number of Items/Questions
24
Key Publications
Cormier JN, Ross MI, Gershenwald JE, Lee JE, Mansfield PF, Camacho LH et al. Prospective assessment of the reliability, validity, and sensitivity to change of the Functional Assessment of Cancer Therapy-Melanoma questionnaire. Cancer 2008;112:2249-57. Link to Pubmed
◉ Skin Cancer Quality of Life Impact Tool (SCQOLIT)
Overview
Assesses the impact of non-metastatic skin cancer (both melanoma and non-melanoma skin cancers)
Number of Items/Questions
10
Key Publications
Burdon-Jones D , Gibbons K. The Skin Cancer Quality of Life Impact Tool (SCQOLIT): a validated health-related quality of life questionnaire for non-metastatic skin cancers. J Eur Acad Dermatol Venereol 2013;27:1109-13. Link to Pubmed
How to Gain Access
See original article. Permission must be obtained from the authors.
◉ Skin Cancer Quality of Life (SCQoL)
Overview
Non-melanoma skin cancer; domains include function, emotions, and control
Number of Items/Questions
9
Key Publications
Vinding GR, Christensen KB, Esmann S, Olesen AB , Jemec GBE. Quality of life in non-melanoma skin cancer—the skin cancer quality of life (SCQoL) questionnaire. Dermatol Surg 2013;39:1784-93. Link to Pubmed
How to Gain Access
See supplementary material of the original article. Permission must be obtained from the authors.
◉ Basal and Squamous Cell Carcinoma Quality of Life (BaSQoL) Questionnaire
Overview
A tool for assessing the behavioral, psychosocial, and emotional effects of keratinocyte carcinomas
Number of Items/Questions
16
Key Publications
Waalboer-Spuij R, Hollestein LM, Timman R, van de Poll-Franse LV , Nijsten TE. Development and Validation of the Basal and Squamous Cell Carcinoma Quality of Life (BaSQoL) Questionnaire. Acta Derm Venereol 2018;98:234-9. Link to Pubmed
How to Gain Access
Must contact authors before using or translating the questionnaire.
◉ Mohs micrographic surgery (MMS) Quality of Life Questionnaire
Overview
A tool assessing the quality of life and emotional effects of MMS to treat skin cancer
Number of Items/Questions
12
Key Publications
Kavanagh KJ , Christophel JJ. Development of a Patient-Reported Outcome Measure for Mohs Reconstruction. Facial Plast Surg Aesthet Med 2020;22:274-80. Link to Pubmed
How to Gain Access
Must contact authors before using or translating the questionnaire.
>Urticaria
◉ Chronic Urticaria Quality of Life (CU-Q2oL)
Overview
A chronic urticaria-specific assessment of HRQL on six domains: pruritus, swelling, life activities impact, sleep problems, appearance, limitations
Number of Items/Questions
23
Key Publications
Baiardini I, Pasquali M, Braido F, Fumagalli F, Guerra L, Compalati E et al. A new tool to evaluate the impact of chronic urticaria on quality of life: chronic urticaria quality of life questionnaire (CU-QoL). Allergy 2005;60:1073-8. Link to Pubmed
A tool to assess disease control in patients with chronic urticaria
Number of Items/Questions
4
Key Publications
Weller K, Groffik A, Church MK, Hawro T, Krause K, Metz M et al. Development and validation of the Urticaria Control Test: a patient-reported outcome instrument for assessing urticaria control. J Allergy Clin Immunol 2014;133:1365-72, 72.e1-6. Link to Pubmed
A vitiligo-specific measure that assesses symptoms, functioning, and emotions as well as severity
Number of Items/Questions
16
Key Publications
Lilly E, Lu PD, Borovicka JH, Victorson D, Kwasny MJ, West DP et al. Development and validation of a vitiligo-specific quality-of-life instrument (VitiQoL). J Am Acad Dermatol 2013;69:e11-8. Link to Pubmed
How to Gain Access
Must contact authors before using or translating the questionnaire.
>Vulvar Disease
◉ Vulvar Disease Quality of Life Index (VQLI)
Overview
A global QOL measure exploring the effects of vulvar disease on symptoms, sexual functioning, and emotions
Number of Items/Questions
15
Key Publications
Saunderson RB, Harris V, Yeh R, Mallitt KA , Fischer G. Vulvar quality of life index (VQLI) - A simple tool to measure quality of life in patients with vulvar disease. Australas J Dermatol 2020;61:152-7. Link to Pubmed
How to Gain Access
Must contact authors before using or translating the questionnaire.
