Background/Aims: The newly adapted generic KINDL-A(dult)B(rief) questionnaire showed satisfactory cross-sectional psychometric properties in adults with bleeding disorders or thrombophilia. This investigation aimed to evaluate its cross-sectional and longitudinal construct validity. Methods: After ethical committee approval and written informed consent, 335 patients (mean age 51.8 ± 16.6 years, 60% women) with either predominant thrombophilia (n = 260) or predominant bleeding disorders (n = 75) participated. At baseline, patients answered the KINDL-AB, the MOS 36-item Short-Form Health Survey (SF-36), and the EQ-5D-3L. A subgroup of 117 patients repeated the questionnaire after a median follow-up of 2.6 years (range: 0.4–3.5). A priori hypotheses were evaluated regarding convergent correlations between KINDL-AB overall well-being and specific subscales, EQ-5D-3L index values (EQ-IV), EQ-5D visual analog scale (EQ-VAS), and SF-36 subscales. Results: Contrary to hypothesis, baseline correlations between the KINDL-AB and EQ-IV/EQ-VAS were all moderate while, as hypothesized, several KINDL-AB subscales and SF-36 subscales correlated strongly. At follow-up, no significant changes in all three instruments occurred. Correlations between instruments over the follow-up were mostly moderate and partially strong. Contrary to hypothesis but consistent with no significant changes in health-related quality of life, convergent correlations between changes in KINDL-AB overall well-being, physical and psychological well-being, and EQ-IV/EQ-VAS were all weak. Conclusions: While repeated measures of KINDL-AB showed moderate to strong correlations, changes in KINDL-AB overall well-being and subscales correlated more weakly than expected with changes involving two established instruments of generic health status.

1.
Cohn
DM
,
Nelis
EA
,
Busweiler
LA
,
Kaptein
AA
,
Middeldorp
S
.
Quality of life after pulmonary embolism: the development of the PEmb-QoL questionnaire
.
J Thromb Haemost
.
2009
Jun
;
7
(
6
):
1044
6
.
[PubMed]
1538-7933
2.
Fiume
A
,
Deveber
G
,
Jang
SH
,
Fuller
C
,
Viner
S
,
Friefeld
S
.
Development and validation of the Pediatric Stroke Quality of Life Measure
.
Dev Med Child Neurol
.
2018
Jun
;
60
(
6
):
587
95
.
[PubMed]
0012-1622
3.
Arranz
P
,
Remor
E
,
Quintana
M
,
Villar
A
,
Díaz
JL
,
Moreno
M
, et al.;
Hemofilia-QoL Group
.
Development of a new disease-specific quality-of-life questionnaire to adults living with haemophilia
.
Haemophilia
.
2004
Jul
;
10
(
4
):
376
82
.
[PubMed]
1351-8216
4.
Limperg
PF
,
Terwee
CB
,
Young
NL
,
Price
VE
,
Gouw
SC
,
Peters
M
, et al.
.
Health-related quality of life questionnaires in individuals with haemophilia: a systematic review of their measurement properties
.
Haemophilia
.
2017
Jul
;
23
(
4
):
497
510
.
[PubMed]
1351-8216
5.
Rentz
A
,
Flood
E
,
Altisent
C
,
Bullinger
M
,
Klamroth
R
,
Garrido
RP
, et al.;
Members of the HAEMO-QoL-A Steering Committee
.
Cross-cultural development and psychometric evaluation of a patient-reported health-related quality of life questionnaire for adults with haemophilia
.
Haemophilia
.
2008
Sep
;
14
(
5
):
1023
34
.
[PubMed]
1351-8216
6.
Skinner
MW
,
Chai-Adisaksopha
C
,
Curtis
R
,
Frick
N
,
Nichol
M
,
Noone
D
, et al.
.
The Patient Reported Outcomes, Burdens and Experiences (PROBE) Project: development and evaluation of a questionnaire assessing patient reported outcomes in people with haemophilia
.
Pilot Feasibility Stud
.
2018
Feb
;
4
(
1
):
58
.
[PubMed]
2055-5784
7.
von Mackensen
S
. Quality of life in haemophilia. In:
Preedy
VR
,
Watson
RR
, editors
.
Handbook of Disease Burdens and Quality of Life Measures
.
Heidelberg
:
Springer
;
2010
. pp.
1895
920
.
8.
von Mackensen
S
,
Bullinger
M
;
Haemo-QoL Group
.
Development and testing of an instrument to assess the Quality of Life of Children with Haemophilia in Europe (Haemo-QoL)
.
Haemophilia
.
2004
Mar
;
10
(
s1
Suppl 1
):
17
25
.
[PubMed]
1351-8216
9.
Young
NL
,
Bradley
CS
,
Blanchette
V
,
Wakefield
CD
,
Barnard
D
,
Wu
JK
, et al.
.
Development of a health-related quality of life measure for boys with haemophilia: the Canadian Haemophilia Outcomes—Kids Life Assessment Tool (CHO-KLAT)
.
Haemophilia
.
2004
Mar
;
10
(
s1
Suppl 1
):
34
43
.
[PubMed]
1351-8216
10.
Neufeld
EJ
,
Recht
M
,
Sabio
H
,
Saxena
K
,
Solem
CT
,
Pickard
AS
, et al.
.
Effect of acute bleeding on daily quality of life assessments in patients with congenital hemophilia with inhibitors and their families: observations from the dosing observational study in hemophilia
.
Value Health
.
2012
Sep-Oct
;
15
(
6
):
916
25
.
[PubMed]
1098-3015
11.
Wolinsky
FD
,
Wyrwich
KW
,
Nienaber
NA
,
Tierney
WM
.
Generic versus disease-specific health status measures. An example using coronary artery disease and congestive heart failure patients
.
Eval Health Prof
.
1998
Jun
;
21
(
2
):
216
43
.
[PubMed]
0163-2787
12.
Hermans
C
,
Auerswald
G
,
Benson
G
,
Dolan
G
,
Duffy
A
,
Jiménez-Yuste
V
, et al.
.
Outcome measures for adult and pediatric hemophilia patients with inhibitors
.
Eur J Haematol
.
2017
Aug
;
99
(
2
):
103
11
.
[PubMed]
0902-4441
13.
Bullinger
M
,
Brütt
AL
,
Erhart
M
,
Ravens-Sieberer
U
;
BELLA Study Group
.
Psychometric properties of the KINDL-R questionnaire: results of the BELLA study
.
Eur Child Adolesc Psychiatry
.
2008
Dec
;
17
(
S1
Suppl 1
):
125
32
.
[PubMed]
1018-8827
14.
Ravens-Sieberer
U
,
Bullinger
M
.
Assessing health-related quality of life in chronically ill children with the German KINDL: first psychometric and content analytical results
.
Qual Life Res
.
1998
Jul
;
7
(
5
):
399
407
.
[PubMed]
0962-9343
15.
Neuner
B
,
Krampe
H
,
McCarthy
WJ
,
Reinke
S
,
Kowalski
D
,
Clausnizer
H
, et al.
.
Psychometric Properties of a Modified KINDL-R Questionnaire for Adolescents and Adults, and Construction of a Brief Version, the KINDL-A(dult)B(rief) Questionnaire, KINDL-AB
.
Acta Haematol
.
2018
;
140
(
1
):
1
9
.
[PubMed]
0001-5792
16.
Hu
L
,
Bentler
PM
.
Cutoff criteria for fit indexes in covariance structure analysis: conventional criteria versus new alternatives
.
Struct Equ Modeling
.
1999
;
6
(
1
):
1
55
. 1070-5511
17.
EuroQol Research Foundation
. EQ-5D-3L User Guide. https://euroqol org/publications/user-guides.
18.
Ellert
U
,
Bellach
BM
.
[The SF-36 in the Federal Health Survey—description of a current normal sample]
.
Gesundheitswesen
.
1999
Dec
;
61
(
Spec No
):
S184
90
.
[PubMed]
0941-3790
19.
Ware
JE
Jr
,
Sherbourne
CD
.
The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection
.
Med Care
.
1992
Jun
;
30
(
6
):
473
83
.
[PubMed]
0025-7079
20.
Evans
JD
.
Straightforward Statistics for the Behavioral Sciences
.
Belmont, CA, US
:
Thomson Brooks / Cole Publishing Co
;
1996
.
21.
Gnanadesikan
R
,
Kettenring
JR
.
Robust estimates, residuals and outlier detection with multiresponse data
.
Biometrics
.
1972
;
28
(
1
):
81
124
. 0006-341X
22.
Kowalski
CJ
.
On the Effects of Non-Normality on the Distribution of the Sample Product-Moment Correlation Coefficient
[Series C]
.
J R Stat Soc [Ser A]
.
1972
;
21
:
1
12
.0035-9238
23.
DiStefano
C
,
Motl
RW
.
Further Investigating Method Effects Associated With Negatively Worded Items on Self-Report Surveys
.
Struct Equ Modeling
.
2006
;
13
(
3
):
440
64
. 1070-5511
24.
Motl
RW
,
DiStefano
C
.
Longitudinal invariance of self-esteem and method effects associated with negatively worded items
.
Struct Equ Modeling
.
2002
;
9
(
4
):
562
78
. 1070-5511
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