Table 1 Overview of PRO tools suitable for assessing impairment in the senses and overall health status in patients with MPS, with focus on adults and self-completion and based on the following criteria: applicability to patients with MPS, applicability to different countries and cultures, ease of use (≤10 min to complete), validated, and availability of normative data
From: Assessing the impact of the five senses on quality of life in mucopolysaccharidoses
Name tool | Abbreviation | Original target population | Time to complete | What does it measure? | Validation literature | Normative data literature | Used in MPS? | Language(s) | Target age |
|---|---|---|---|---|---|---|---|---|---|
Hearing & speech | |||||||||
Hearing | |||||||||
Attitudes Toward Loss of Hearing Questionnaire | ALHQ | Hearing impairment, with or without hearing aids | ±10 min | Attitudes toward hearing loss and hearing aids | Saunders G 2005 [58] | Saunders G 2005 [58] | No | English, Korean | Adults |
Spatial Hearing Questionnaire | SHQ | Not disease-linked | ±10 min | Perception of spatial hearing abilities/disabilities | Tyler RS 2009 [59] | Perreau AE 2014 [60] | No | English + 10 translations | NA |
Speech | |||||||||
Speech Handicap Index | SHI | Speech problems | 5 min | Speech-related problems in daily life (psychosocial and speech function) | Rinkel RN 2008 [61] | Rinkel RN 2008 [61] | No | English, French, Dutch, Portuguese, Chinese | Adults |
Voice Handicap Index | VHI | Voice disorders | 5 min | Impact of voice disorders on QoL (functional, physical and emotional) | Francis DO 2017 [62] | Arffa RE 2012 [63] | No | English + 6 translations | Adults |
Voice Outcome Survey | VOS | Uncompensated unilateral vocal fold paralysis | 2–5 min | Vocal status and impact on daily activities | Gliklich RE 1999 [64] | Gliklich RE 1999 [64] | English, Chinese | Adults | |
Vision | |||||||||
Visual Function Short Form | VF-8R | Cataract | 5 min | Functional impairment caused by vision loss | Gothwal VK 2010 [65] | Gothwal VK 2010 (pre- vs post-op) [65] | No | English, Chinese | Adults |
Touch | |||||||||
Upper limb function | |||||||||
Health Assessment Questionnaire | HAQ | Arthritis | 5 min | Physical disability | Bruce B 2003 [66] | Bruce B 2003 [66] | Yes [8]a | English + 62 translations | Adultsd |
Quick Disabilities of the Arm, Shoulder and Hand Questionnaire | Quick-DASH | Upper-extremity disorders | 2 min | Symptoms and ability to perform certain activities | Beaton DE 2005 [67] | Aasheim T 2014 [68] | No | 50 languages | Adults |
Pain | |||||||||
Brief Pain Inventory Short Form | BPI-SF | Chronic or acute pain | 5 min | Pain severity and impact of pain on daily functioning | Cleeland CS 2009 [69] | NAc | Yes [8] | English + 52 translations | Adults |
West Haven - Yale Multidimensional Pain Inventory | WHYMPI | Chronic pain | 5–10 min | Description of pain and how it affects the individual | Kerns RD 1985 [70] | No | English + 9 translations | Adults | |
Smell & taste | |||||||||
Chronic Sinusitis Surveyb | CSS | Chronic sinusitis | 5 min | Health status and treatment effectiveness in chronic rhinosinusitis | Gliklich RE 1997 [73] | No | English, Norwegian, Chinese, Turkish | Adults | |
Health status | |||||||||
Five-level EuroQol five-dimensional questionnaire | EQ-5D-5 L | General population | < 5 min | Generic measure of health status for clinical and economic appraisal | Herdman M 2011 [54] | Szende A 2014 [74] | Yes [8] | > 120 languages | Adults |