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Table 3 Summary of selected PRO instruments (N = 35), including psychometric strength, content validity and concept coverage

From: Development of a preliminary conceptual model of the patient experience of chronic kidney disease: a targeted literature review and analysis

  Generic HRQOL Generic concept-specific
SF-36 EQ-5D BDI (BDI-II) PHQ (PHQ-9) HADS TMT HAP RAPAa QDIS-7a
Time to completion 5–10 min 8 min 5–10 min 10 min 2–5 min 5–10 min 5–10 min < 2 min < 1 min
Items 36 5 + 1 VAS (20 cm) 21 9 14 2 section 102 9 7
Recall Past 4 wks/ past wk Today 2 wks/ including today Past month Past wk Present 7 d NR Past 4 wks
Languages 160 181 73 86 116 46 NA NR NR
Presence in trials Yes Yes Yes Yes No No No No No
Presence in labels Yes Yes Yes No Yes No No No No
Psychometric strength Strong Moderate Weak Weak Moderate Weak Moderate Moderate Moderate
Population CKD with anaemia Pre-dialysis CKD CKD or dialysis Dialysis Dialysis Dementia CKD-dialysis Healthy adults CKD
Content validity Weak Weak Weak Weak Weak Weak Weak Weak Weak
Population Generic Generic Depression Anxiety Anxiety/ depression Brain injury Lung disease Generic Generic
Signs/symptoms
 General 2/30 1/30 5/30 3/30 0/30 0/30 1/30 1/30 2/30
 Diabetes 2/19 1/19 2/19 2/19 0/19 0/19 1/19 1/19 1/19
 Anaemia 2/6 1/6 1/6 1/6 0/6 0/6 1/6 0/6 1/6
 CKD 1–3 2/12 1/12 2/12 2/12 0/12 0/12 0/12 0/12 2/12
 CKD 4–5 2/26 1/26 4/26 3/26 0/26 0/26 1/26 1/26 2/26
 Dialysis 2/31 1/31 5/31 3/31 0/31 0/31 1/31 1/31 2/31
Life impacts
 General 8/28 5/28 9/28 7/28 5/28 2/28 2/28 1/28 12/28
 Diabetes 7/20 4/20 6/20 6/20 3/20 1/20 1/20 1/20 9/20
 Anaemia 6/14 4/14 4/14 5/14 2/14 0/14 2/14 1/14 7/14
 CKD 1–3 6/13 5/13 6/13 5/13 2/13 2/13 2/13 1/13 9/13
 CKD 4–5 7/18 5/18 6/18 6/18 3/18 2/18 2/18 1/18 10/18
 Dialysis 8/28 5/28 9/28 7/28 5/28 2/28 2/28 1/28 12/28
Generic concept-specific
  BPI FACIT-F PSQI SKINDEX RLS-6 CSI FACT-Anb HGS WPAI FAACTb SDS (Zung)a
Time to completion 10 min 8–10 min 5–10 min NR NR NR 10 min NR NR 5–10 min 10 min
Items 56 40 24 10 6 33 47 NR 6 39 20
Recall Past wk Past 7 d Past month NR 7 d/ nights Past 6 months Past 7 d NR Current/ past 7 d Past 7 d In general
Languages 52 58 77 NR NR NA 53 NR 70 31 NR
Presence in trials No Yes Yes Yes Yes No Yes No No Yes No
Presence in labels Yes Yes Yes Yes No No Yes Yes Yes No No
Psychometric strength Moderate Moderate Moderate Weak Moderate Weak Strong Moderate Weak Weak Weak
Population CKD-dialysis ESRD-dialysis Renal transplant Skin diseases RLS Dialysis CKD with anaemia CKD-dialysis Anaemia Cancer/HIV with anorexia Depression
Content validity Weak Weak Weak Weak Weak Weak Weak Weak Weak Weak Weak
Population Pain Chronic disease Sleep disorder Pruritus RLS Generic Anaemia Generic Anaemia Anorexia/ cachexia Depression
Signs/symptoms
 General 3/30 2/30 5/30 1/30 3/30 0/30 7/30 1/30 0/30 6/30 5/30
 Diabetes 2/19 1/19 2/19 1/19 1/19 0/19 4/19 1/19 0/19 5/19 1/19
 Anaemia 1/6 1/6 2/6 0/6 1/6 0/6 3/6 0/6 0/6 2/6 1/6
 CKD 1–3 2/12 2/12 2/12 1/12 2/12 0/12 3/12 0/12 0/12 2/12 2/12
 CKD 4–5 2/26 2/26 4/26 1/26 3/26 0/26 6/26 1/26 0/26 6/26 5/26
 Dialysis 3/31 2/31 4/31 1/31 3/31 0/31 8/31 1/31 0/31 7/31 5/31
Life impacts
 General 6/28 3/28 3/28 7/28 6/28 2/28 9/28 0/28 1/28 10/28 4/28
 Diabetes 4/20 2/20 2/20 4/20 4/20 2/20 6/20 0/20 0/20 7/20 3/20
 Anaemia 3/14 2/14 2/14 2/14 4/14 1/14 6/14 0/14 0/14 6/14 3/14
 CKD 1–3 5/13 2/13 2/13 4/13 5/13 2/13 5/13 0/13 1/13 4/13 2/13
 CKD 4–5 3/18 2/18 2/18 3/18 5/18 2/18 7/18 0/18 0/18 8/18 3/18
 Dialysis 6/28 3/28 3/28 7/28 6/28 2/28 9/28 0/28 1/28 10/28 4/28
Kidney disease-specific HRQOL
  KDQOL-36 KDQOL-SF KDQOL CHEQ DSI WHOQOL-BREF Dial. POS-S Renal QLI-D CKD QOL KDBI CKD-SBI
Time to completion NR 16 min 30 min NR NR 5/15–20 min NR 5–10 min NR NR Approx. 10 min
Items 36 80 134 86 30 26 18 68 34 16 25
Recall 1 d/past 4 wks Past 4 wks Past 4 wks 4 wks Past 7 d Past 2–4 wks 1 wk NR Past 4 wks Past month 7 d
Languages 37 25 41 2 NR 51 NR 6 NR NR 1
Presence in trials Yes Yes Yes No Yes No Yes No No No No
Presence in labels No No No No No No No No No No No
Psychometric strength Moderate Weak Weak Weak Moderate Moderate Moderate Moderate Moderate Moderate Moderate
Population CKD Kidney disease-dialysis Kidney disease-dialysis ESRD-dialysis CKD- dialysis CKD- dialysis Advanced CKD ESRD- dialysis CKD (3–5, dialysis & transplant) ESRD CKD
Content validity Moderate Moderate Moderate Strong Strong Strong Moderate Strong Strong Moderate Strong
Population Kidney disease Kidney disease-dialysis Kidney disease-dialysis Kidney disease-dialysis Dialysis CKD (4–5) CKD (4–5) Kidney disease-dialysis CKD (3–5, dialysis & transplant) Kidney disease CKD
Signs/symptoms
 General 9/30 9/30 3/30 3/30 16/30 0/30 14/30 1/30 2/30 0/30 13/30
 Diabetes 8/19 8/19 2/19 1/19 9/19 0/19 9/19 1/19 2/19 0/19 8/19
 Anaemia 4/6 4/6 2/6 1/6 6/6 0/6 3/6 1/6 2/6 0/6 3/6
 CKD 1–3 6/12 6/12 2/12 2/12 6/12 0/12 6/12 1/12 2/12 0/12 4/12
 CKD 4–5 9/26 9/26 3/26 3/26 15/26 0/26 14/26 1/26 2/26 0/26 12/26
 Dialysis 10/31 10/31 3/31 3/31 17/31 0/31 15/31 1/31 2/31 0/31 13/31
Life impacts
 General 13/28 13/28 12/28 14/28 5/28 5/28 2/28 4/28 5/28 4/28 2/28
 Diabetes 10/20 10/20 9/20 12/20 4/20 4/20 2/20 3/20 5/20 2/20 2/20
 Anaemia 9/14 9/14 10/14 11/14 2/14 5/14 2/14 4/14 4/14 1/14 0/14
 CKD 1–3 8/13 8/13 8/13 8/13 2/13 4/13 2/13 3/13 4/13 1/13 2/13
 CKD 4–5 10/18 10/18 10/18 11/18 5/18 4/18 2/18 4/18 5/18 2/18 2/18
 Dialysis 13/28 13/28 12/28 14/28 5/28 5/28 2/28 4/28 5/28 4/28 2/28
Kidney disease-specific
  ESRD-SI HSS FAS FSGS
Time to completion NR NR NR NR
Items NR 29 10 17
Recall NR NR Usually Past 7 d
Languages NR NR 2 NR
Presence in trials No No No No
Presence in labels No No No No
Psychometric strength Moderate Moderate Weak Weak
Population ESRD- dialysis ESRD- dialysis ESRD- dialysis NR
Content validity Moderate Moderate Weak Moderate
Population CKD-dialysis CKD-dialysis Fatigue FSGS
Signs/symptoms
 General 6/30 7/30 1/30 7/30
 Diabetes 7/19 3/19 1/19 4/19
 Anaemia 5/6 2/6 1/6 3/6
 CKD 1–3 5/12 6/12 1/12 4/12
 CKD 4–5 6/26 7/26 1/26 5/26
 Dialysis 6/31 7/31 1/31 7/31
Life impacts
 General 0/28 12/28 3/28 13/28
 Diabetes 0/20 7/20 3/20 12/20
 Anaemia 0/14 8/14 2/14 9/14
 CKD 1–3 0/13 7/13 2/13 8/13
 CKD 4–5 0/18 7/18 3/18 11/18
 Dialysis 0/28 12/28 3/28 13/28
  1. The coverage of signs/symptoms and life impacts by each PRO was categorized as good (≥6 concepts [in bold]), moderate (3–5) or poor (0–2 [in italics])
  2. aSelected for analysis because of its potential for use in patients with CKD, although it was not among the PRO instruments identified from the data sources
  3. bInstrument includes the FACT-G module
  4. BPI Brief Pain Inventory, CHEQ CHOICE Health Experience Questionnaire, CKD chronic kidney disease, CKD QOL Chronic Kidney Disease Quality of Life, CKD-SBI Chronic Kidney Disease-Symptom Burden Index, CSI Coping Strategy Indicator, d days, DSI Dialysis Symptom Index, EQ-5D European quality of life – five dimension, ESRD end-stage renal disease, ESRD-SI End-Stage Renal Disease Severity Index, FAACT Functional Assessment of Anorexia/Cachexia Therapy, FACIT-F Functional Assessment of Chronic Illness Therapy-Fatigue Scale, FACT-An Functional Assessment of Cancer Therapy-Anemia, FACT-G Functional Assessment of Cancer Therapy-General, FAS Hemodialysis Fatigue Scale, FSGS Focal Segmental Glomerulosclerosis Symptom Impact Questionnaire, HADS Hospital Anxiety and Depression Scale, HAP Human Activity Profile, HGS hand grip strength test, HIV human immunodeficiency virus, HRQOL health-related quality of life, HSS Hemodialysis Stressor Scale, KDBI Kidney Disease Behavior Inventory, KDQOL Kidney Disease Quality of Life, KDQOL-36 Kidney Disease Quality of Life-36, KDQOL-SF Kidney Disease Quality of Life Short Form, NA not applicable, NR not reported, PHQ Patient Health Questionnaire, POS-S Renal Palliative Care Outcome Scale-Symptoms (Renal), PRO patient-reported outcome, PSQI Pittsburgh Sleep Quality Index, QDIS-7 Quality of Life Disease Impact Scale-7, QLI-D Quality of Life Index Dialysis Version, RAPA Rapid Assessment Physical Activity, RLS restless legs syndrome, RLS-6 Restless Legs Syndrome-6 Scale, SDS (Zung) the Zung self-rating depression scale, SF-36 36-Item Short-Form Survey, SKINDEX quality-of-life measure for patients with skin disease, TMT Trail Making Test, VAS Visual Analogue Scale, WHOQOL-BREF Dial. World Health Organization Quality of Life Brief Scale in Dialysis, wk. week, WPAI Work Productivity and Activity Impairment