Table 2.
Characteristics of patient-reported outcome measures
| PROM (first reference) | Type | Construct(s) | Target population | Mode of administration | Items | Rating scale | Item score | Total score |
|---|---|---|---|---|---|---|---|---|
| Health-related quality of life | ||||||||
| EORTC-QLQ-C30 [97] | Disease-specific | Health-related quality of life (functional status, symptoms, global health, quality of life, financial impact) | Patients with cancer | Self-report | 30 | Item 1–7: no/yes, item 8–28: Likert scale 4-point, item 29–30: Likert scale 7-point | 0–100 | Score per scale (0–100) |
| SF-36 [98] | Generic | Health-related quality of life (physical functioning, role limitations because of physical health problems, bodily pain, social functioning, general mental health, role limitations because of emotional problems, vitality, general health perceptions) | Persons 14 years of age and older | Self-report or interview | 36 | Item 4–5: no/yes, other items: scale with Likert scale ranging from 3-point to 7-point | 0–100 | Scores determined by algorithm (T-score based on norm: general US population) |
| SF-8 [99] | Generic | Health-related quality of life (physical functioning, role limitations because of physical health problems, bodily pain, social functioning, general mental health, role limitations because of emotional problems, vitality, general health perceptions) | Persons 14 years of age and older | Self-report | 8 | Likert scale 5-point or 6-point | 0–100 | Scores determined by algorithm (T-score based on norm: general US population) |
| EQ-5D-3L [100] | Generic | Health-related quality of life (mobility, self-care, main activity, social relationships, pain, mood) | Adults | Self-report | 5 | 3 levels and overall rating of health | Variable | Overall rate of health 0–100, score per level, summary index (based on a formula) |
| EQ-5D-5L [101] | Generic | Health (mobility, self-care, usual activities, pain/discomfort, anxiety/depression) | Adults | Self-report | 5 | 5 levels and overall rating of health | Variable | Overall rate of health 0–100, score per level, summary index (based on a formula) |
| FACT-G [102] | Disease-specific | Health-related quality of life (physical, social, emotional and functional well-being) | Patients with cancer | Self-report | 27 | Likert scale 5-point | 0–4 | Weighted score per subscale, transformed to overall score of 0–108 |
| PROMIS -Global Health [103] | Generic | Health (physical function, fatigue, pain, emotional distress, and social health) | Adults | Self-report | 10 | Likert scale 5-point | Variable | One score for physical health and one score for mental health |
| Functional status | ||||||||
| TESS [11] | Disease-specific | Functional status | Adult musculoskeletal oncology | Self-report | 57 (28 UE and 29 LE) | Likert scale 5-point | Weighted | 0–100 |
| LEFS [104] | Disease-specific | Functional status | Patients with any LE musculoskeletal condition | Self-report | 20 | Likert scale 5-point | 0–4 | 0–80 |
| MHQ [105] | Disease-specific | Functional status | Patients with hand disorders | Self-report | 37 | Raw score per scale (in total 6 different scales), which is converted to a score 0–100 | Weighted | 0–100, the sum of each scale divided by 6 |
| FAOS [106] | Disease-specific | Functional status | Patients with foot and ankle problems | Self-report | 42 | Likert scale 5-point, 5 subscales | 0–4 | Raw scores of the 5 subscales transformed to 0–100 |
| SMFA [107] | Disease-specific | Functional status | Patients with musculoskeletal disease | Self-report | 46 | Two scales (34 and 12 items), Likert scale 5-point (1–5) | 1–5 | Sum of scales transformed by formula to 0–100 |
| QuickDASH [108] | Disease-specific | Functional status and symptoms | Patients with any or multiple disorders of the UE | Self-report | 11 | Likert scale 5-point | 1–5 | Sum of responses transformed by formula to 0–100 |
| PROMIS -Physical function [103] | Generic | Physical function | Adults | Self-report | Item bank 124; short form 10 | Likert scale 5-point | Variable | T-score (score of 50 equals the mean of the US population) |
| Symptoms | ||||||||
| BPI-SF [109] | Generic | Pain | Adults | Self-report | 9 | Item 1: no/yes, item 2: body diagram, item 3–6 and 8–9: Likert scale 0–10, item 7: open-ended question | 0–10 | Per subscale (pain severity and pain interference): mean of Likert scale (0–10) |
| LENT-SOMA [110] | Disease-specific | Late toxicity of radiation therapy | Patients with cancer | Self-report or interview | 37 | Likert scale 4-point | 1–4 | None, all criteria are described separately |
| ISI [111] | Generic | Insomnia | Adults with insomnia complaints | Self-report | 7 | Likert scale 5-point | 0–4 | Summary of scores per item |
| MFI-20 [112] | Generic | Fatigue (general fatigue, physical fatigue, reduced activity, reduced motivation, mental fatigue) | Adults | Self-report | 20 | Likert scale 5-point | 1–5 | Score per scale (4–20) |
| NRS [113] | Generic | Pain | Adults | Self-report | 1 | Likert scale 11-point | 0–10 | 0–10 |
| MIDOS [114] | Disease-specific | Symptoms (pain, drowsiness, nausea, constipation, dyspnea, lymphedema, weakness, anxiety, well-being) | Palliative patients | Self-report | 16 | Likert scale 4-point | 0–3 | Summary of scores per item (0–48) |
| MDASI [115] | Disease-specific | Symptoms (severity and interference) | Patients with cancer | Self-report or interview | 19 | Likert scale 11-point | 0–10 | Per subscale (mean or summary of scores) |
| MSAS-SF [116] | Disease-specific | Symptoms (global distress, physical symptom distress, psychological symptom distress) | Patients with cancer | Self-report | 32 | Likert scale 5-point | 0–4 | Per subscale (mean: 0–4) |
| Three-item Cancer-Related Symptoms Questionnaire [17] | Disease-specific | Pain, cough, shortness of breath | Metastatic sarcomas | Self-report | 3 | Mild-moderate-severe (%) | None (%) | None |
| PROMIS—Pain Interference [103] | Generic | Pain | Adults | Self-report | Item bank 41; short form 6 | Likert scale 5-point | Variable | T-score (score of 50 equals the mean of the US population) |
| PROMIS—Fatigue [103] | Generic | Fatigue | Adults | Self-report | Item bank 95; short form 7 | Likert scale 5-point | Variable | T-score (score of 50 equals the mean of the US population) |
| PROMIS—Sleep disturbance [103] | Generic | Sleep | Adults | Self-report | Item bank 27; short form 8 | Likert scale 5-point | Variable | T-score (score of 50 equals the mean of the US population) |
| FACIT-F [117] | Disease-specific | Fatigue | Patients with chronic (oncologic) illnesses | Self-report | 13 | Likert scale 5-point | 0–4 | Individual item score multiplied by 13, divided by number of items answered |
| PRO-CTCAE [118] | Disease-specific | Symptoms | Patients on cancer clinical trials | Self-report | 124 | Likert scale 5-point | 0–4 | None, score per attribute |
| Mental wellbeing | ||||||||
| HADS [119] | Generic | Anxiety, depression | Patients in a non-psychiatric hospital department | Self-report | 14 | Likert scale 4-point | 0–3 | Per subscale (anxiety/depression): summary of scores |
| CWS [120] | Disease-specific | Cancer worries | Patients with cancer | Self-report | 8 | Likert scale 4-point | 1–4 | 8–32 |
| IES [121] | Generic | Stress | Adults | Self-report | 15 (7 intrusion and 8 avoidance items) | 0 (not at all)—1 (rarely)—3 (sometimes)—5 (often) | 0–1-3–5 | Per subscale (intrusion: 0–35 and avoidance: 0–40), summary of scores (0–75) |
| NCCN Distress Thermometer [122] | Disease-specific | Distress | Patients with cancer | Self-report | 1 | Likert scale 11-point | 0–10 | 0–10 |
| WHO-5 [123] | Generic | Mental wellbeing | Children aged 9 and above | Self-report | 5 | Likert scale 6-point | 0–5 | 0–25 |
| PROMIS—Depression [103] | Generic | Depression | Adults | Self-report | Item bank 28; short form 8 | Likert scale 5-point | Variable | T-score (score of 50 equals the mean of the US population) |
| PROMIS—Anxiety [103] | Generic | Anxiety | Adults | Self-report | Item bank 29; short form 7 | Likert scale 5-point | Variable | T-score (score of 50 equals the mean of the US population) |
| WEMWBS [124] | Generic | Mental wellbeing | Adults | Self-report | 14; short form 7 | Likert scale 5-point | 1–5 | Summing the scores of each of the items |
| FoP-Q-SFa | Disease-specific | Fear of progression | Patients with cancer | Self-report | 12 | Likert scale 5-point | 1–5 | 12–60 |
| Social wellbeing | ||||||||
| RNL [125] | Generic | Participation (mobility, self-care, daily activity, recreational activity, family roles) | Adults after incapacitating illness or severe trauma | Self-report | 11 | Likert scale 10-point | 1–10 | Summary of scores (maximum 110), proportionally converted to a 100-point scale |
| PROMIS—Ability to participate [103] | Generic | Social function | Adults | Self-report | Item bank 14; short form 7 | Likert scale 5-point | Variable | T-score (score of 50 equals the mean of the US population) |
US United States of America, UE upper extremity, LE lower extremity, PROM patient-reported outcome measure
aFull-text of development study not available