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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