Table 1. Characteristics of the measures.
| Measure | Response format scale | N of items | Recall period | Cost of license | Completion time (min) | Pain specific | CKD specific | PLD specific | ADPKD specific | Language | Frequency of use (number of studies) |
|---|---|---|---|---|---|---|---|---|---|---|---|
| Established measures | |||||||||||
| SF-36 [22] | Y/N, 3-/5-/6- point Likert | 36 | Various | Annual license fee a | 10–15 min | No | No | No | No | English, Italian, German, Japanese | 16 (33%) |
| VAS b | 0–10 numerical scale | - | Before/after treatment (up to 120 months) | Contact author | - | Yes | No | No | No | English | 11 (22%) |
| EQ-5D [20] | VAS | 16 | Various | Licensing fee based on quote | <5 min | No | No | No | No | English, Danish, Dutch, Swedish | 7 (14%) |
| GI-Q [27] | 7-point Likert | 11 | Various | Contact author | ~2–3 min | No | No | No | No | - | 6 (12%) |
| KDQOL-SF [29] | Y/N, 3-/4-/5-/6 point Likert | 80 | Various | Free | ~30 min | No | Yes | No | No | Italian | 2 (4%) |
| ADPKD-IS [24] | 5-point Likert | 18 | Various | Contact author | <5 min | No | No | No | Yes | English | 2 (4%) |
| PLD-Q [31] | Numerical scale | 13 | Before/after treatment | Contact author | <5 min | No | No | Yes | No | Dutch, English | 2 (4%) |
| EORTC QLQ-C30 [23] | 4-point Likert | 30 | Before/after treatment | License fee for non-academic users depends on number of patients | ~6 min | No | No | No | No | Dutch, English | 2 (4%) |
| BPI-SF [32]* | Y/N; 0–10 numerical scale | 9 | Before/after treatment | Contact author | ~2 min | Yes | No | No | No | English | 1 (2%) |
| MPQ-DV [33] | VAS | 17 | Before/after treatment (up to 12 months) | Contact author | 2–5 min | Yes | No | No | No | Dutch, | 1 (2%) |
| SF-MPQ-2 [34]* | VAS | 22 | Before/after treatment | Contact author | 2–5 min | Yes | No | No | No | English | 1 (2%) |
| SF-12 [18] | Y/N; 3-,5-,6-point Likert | 12 | Current | License fee upon request | ~2–3 min | No | No | No | No | English, Danish, Swedish | 1 (2%) |
| GSRS (Revised) [28] | 2-,4-point Likert | 11 | Current | Contact author | ~2–3 min | No | No | No | Yes | Korean | 1 (2%) |
| HAM-D [19] | 3-,5-poin Likert | 21 | Before/after treatment (up to 6 months) | Contact author | 15–20 min | No | No | No | No | - | 1 (2%) |
| Wisconsin BPS (Revised) [6] | 6-point Likert | - | Current | Contact author | - | Yes | No | No | Yes | English | 1 (2%) |
| GI-Q (Revised for PLD) [35] | 7-point Likert | 11 | Before/after treatment (up to 30 months) | Contact author | ~2–3 min | Yes | No | Yes | No | - | 1 (2%) |
| Author-developed measures | |||||||||||
| D’Agnolo 2016 [36]#!c | 1–10 numerical scale | - | Current | Contact author | - | Yes | No | No | Yes | - | 2 (4%) |
| D’Agnolo 2017 [37]!c | |||||||||||
| (ADPKD-related pain) | |||||||||||
| Torres 2012 [7]!d | 0–10 numerical scale | - | Before/after treatment (up to 36 months) | Contact author | - | Yes | No | No | Yes | Multiple languages | 2 (4%) |
| Torres 2011 [38]!d | |||||||||||
| (Kidney pain score) | |||||||||||
| Suwabe 2013 [21] | 4-, 5-point Likert | 12 | Current | Contact author | ~2–3 min | No | No | No | Yes | Japanese | 1 (2%) |
| Suwabe 2017 [25] | 4-, 5-point Likert | 15 | Before/after treatment (up to 12 months) | Contact author | <5 min | No | No | No | Yes | Japanese | 1 (2%) |
| Haseebuddin 2012 [39] | - | - | After treatment | Contact author | - | Yes | No | No | Yes | English | 1 (2%) |
| Iliuta 2019 [26] | 5-point Likert | - | Before/after treatment | Contact author | - | No | No | No | Yes | English | 1 (2%) |
| Sakuhara 2015 [17] | 0–10 numerical scale | - | Before/after treatment (up to 24 months) | Contact author | - | No | No | No | Yes | - | 1 (2%) |
| Taylor 2005 [30] | Y/N | - | Current | Contact author | - | No | No | No | Yes | English | 1 (2%) |
| Abraham 2015 [40] | Numerical scale | - | First 48 hours | Contact author | - | Yes | No | No | No | - | 1 (2%) |
| Walsh 2012 [41] | 0–10 numerical scale | - | - | Contact author | - | Yes | No | No | No | English | 1 (2%) |
(-) Not stated, unclear, or unable to ascertain
* The name of questionnaire was extracted from the protocol, since it was not clearly stated in the primary publication (only “Pain questionnaire” was reported)
# Abstract
! More than one studied referred to the same publication; Y/N: Questions requiring yes/no answers. Note: The language is referred to the language that was used in the studies rather than the available languages for the measures.
Abbreviations: KDQOL-SF: Kidney Disease Quality of life—Short Form; GI-Q: Gastrointestinal questionnaire; VAS: Visual Analog scale; SF-36: Medical Outcomes Study Form, 36 items health survey; ADPKD-IS: ADPKD Impact Scale; PLD-Q: Polycystic Liver Disease questionnaire; EQ-5D: European Quality of Life-5 Dimension Questionnaire that may include a VAS scale for pain; EORTC QLQ-C30: European Organization for Research and Treatment of Cancer quality of life questionnaire core-30; BPI-SF: Short-form Brief Pain Inventory; SF-MPQ: Short Form of the McGill Pain Questionnaire; MPQ-DV: McGill Pain Questionnaire (Dutch version); SF-12: Health Survey Short Form 12; GSRS: Gastrointestinal Symptom Rating Scale; HAM-D: The Hamilton Depression Rating Scale; Wisconsin BPS: Modified version of Wisconsin Brief Pain Survey.
a Upon registration for version 2, users can obtain a quote for the license fee that applies to their project; version 1 can be obtained for free
b VAS scale was clearly reported to assess pain in all studies except Qian 2015 [42]. VAS item with open-ended response questions vary
c This author-developed instrument was reported in two studies as ADPKD-related pain
d This author-developed instrument was reported in two studies as Kidney pain score.