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Translation, Cultural Adaptation and Validation of the Kidney Disease

Quality of LifeeShort Form 1.3 in an African Country


H. Rhoua, F. Ezaitounia, N. Ouzeddouna, R. Bayahiaa, K. Elhajjib, R. Roudièsb, F.Z. Sekkatb, R. Razinec,
R. Abouqalc, A. Alghadid, A. Azennoude, and L. Benamara
a
Department of Nephrology-Dialysis-Transplantation, Ibn Sina University Hospital, Rabat, Morocco; bDepartment of Psychiatry, Ibn
Sina University Hospital, Rabat, Morocco; cDepartment of Epidemiology, Ibn Sina University Hospital, Rabat, Morocco; dDepartment of
English, Faculty of letters and Humanities, Rabat, Morocco; and eAl Akhawayn University, Ifrane, Morocco

ABSTRACT
Background. The impact of dialysis on patient quality of life has been recognized as an
important outcome measure. The Dialysis Outcomes and Practice Patterns Study
compared quality of life in 4 continents [1], but very scarce information is available about
dialysis patients’ quality of life in Africa. The objective of this study was to translate the
Kidney Disease Quality of LifeeShort Form (KDQOL-SF) into Moroccan and measure its
psychometric properties.
Methods. The questionnaire was first translated into Moroccan by 2 independent
translators, and then 2 backward translations into English were performed after pretesting
in 10 dialysis patients. The final questionnaire was then administered to 80 dialysis patients.
Reliability was estimated by internal consistency and testeretest reliability. Validity was
assessed using known group comparisons and correlations between overall health rating
and scales scores.
Results. Some activities were substituted since they were not common in Morocco. All
subscales had a Cronbach a above the recommended value except for 3 scales. All of the
items showed good testeretest reliability. Correlation of items within subscales was higher
than that of items outside subscales in 87% of cases. Regarding construct validity, all
KDQOL-SF scales had significant correlation with overall health rating except for sexual
function and dialysis staff encouragement. Furthermore, the questionnaire could be used
to discriminate between subgroups of the patients.
Conclusions. The psychometric properties of the KDQOL-SF resulting from this first-
time administration of the instrument support the validity and reliability of the
KDQOL-SF as a measure of quality of life of patients having hemodialysis in Morocco.

H EALTH-RELATED QUALITY OF LIFE (QOL) is


known to be impaired in patients undergoing dialysis
compared to general population [2,3]. In the last decades,
States by Ron Hays to assess the functioning and well-being
of people with kidney disease [6]. It is one of the most
complete instruments currently available in patients with
advances in dialysis therapy led to increasing life expec- chronic kidney disease [2]. This questionnaire has been
tancy, but few efforts were made to improve patients’ QOL. translated in multiple languages [7e11] and has been widely
Currently, QOL is increasingly recognized as one way of used in studies, particularly in the Dialysis Outcomes and
measuring treatment outcome [4,5]. As a consequence, a
number of generic and specific questionnaires of QOL have
been developed. *Address correspondence to Bayane Bouidida, 30, Voie Romaine,
The Kidney Disease Quality of LifeeShort Form (KDQOL- Internat Pasteur, 06000, Nice, France. E-mail: b.bayane@hotmail.
SF) is a disease-specific instrument, developed in the United com

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360 Park Avenue South, New York, NY 10010-1710 http://dx.doi.org/10.1016/j.transproceed.2014.02.011

Transplantation Proceedings, 46, 1295e1301 (2014) 1295


1296 RHOU, EZAITOUNI, OUZEDDOUN ET AL

Practice Patterns Study [1] and in the United States Renal Backward Adaptation. Two backward translations were done by
Data SystemdAnnual Data Report [12]. English native translators and a consensus version was compared to
To date, a Moroccan version of the questionnaire has not the original English version.
yet been developed. Therefore, the purpose of this study
was to translate the KDQOL-SF into Moroccan, to adapt it Test Field
culturally and test its psychometric properties in a Moroc-
To measure psychometric properties, the Moroccan version was
can dialysis population.
administered to 80 patients on dialysis at Ibn Sina Hospital. In-
clusion criteria were (1) age more than 18 years, (2) dialysis treat-
PATIENTS AND METHODS ment for 3 months without life-threatening disease at the time of
The Questionnaire the test, (3) patient consent. Exclusion criteria were language
difficulties.
The KDQOL-SF consists of 79 items divided into 19 scales (8 In this cross-sectional study, 78% of patients were in hemodial-
generic scales, 11 disease-specific scales) and an overall health ysis and 22% in peritoneal dialysis (Table 1). The majority were
rating item [6]: females and mean age was 43.9  14.2 years. The mean time on
 Short-form 36 (SF-36) [13] (8 dimensions/36 items): physical dialysis among the patients was 104.8  120 months.
functioning (10 items), role limitations caused by physical
problems (4 items), role limitations caused by emotional prob- Statistical Analysis and Psychometric Properties
lems (3 items), pain (2 items), general health (5 items), social
functioning (2 items), emotional well-being (5 items), energy/ Means of each scale and standard deviation were determined.
fatigue (4 items), and 1 item about health status compared to 1 Reliability and validity were determined. Percentages of floor and
year previously. ceiling were also assessed. Ceiling effects were taken as being the
 Kidney diseaseetargeted items (11 dimensions/43 items): symp- percentage of respondents with scores of 100 and floor effects were
tom/problem list (12 items), effects of kidney disease (8 items), the percentage of respondents having a score of 0. Ceiling and floor
burden of kidney disease (4 items), cognitive function (3 items), effects should be less than 30% to ensure that the scale captures the
quality of social interaction (3 items), sexual function (2 items), full range of potential responses within the population and that
sleep (4 items), social support (2 items), work status (2 items), changes over time can be detected.
patient satisfaction (1 item), dialysis staff encouragement Multitrait/Multi-Item Correlations. Correlation coefficients were
(2 items). calculated by using Pearson correlation to assess the strength of
 Overall health rating (1 item scored separately). relationships between items within and outside each scale.
For each scale, a score can be calculated according to a standard The item internal consistency assesses item correlation with a
procedure available on: http://gim.med.ucla.edu/kdqol. Scores corresponding scale, corrected for overlap. A correlation corrected
range from 0 to 100, with a higher score indicating better QOL. for overlap is the correlation of an item with the remaining items of
the scale, which removes the bias of correlating an item with itself.
Translation Procedure A correlation of 0.4 or more has been used as the standard for
supporting the item’s internal consistency.
The study protocol was approved by R. Hays and the local ethical The discriminant validity was assessed by comparing item cor-
committee of Ibn Sina University Hospital Center. The translation relation within and outside each scale. We hypothesized that each
steps were carried out according to specifications established by the
KDQOL Working Group.
Table 1. Patient Characteristics
Forward Adaptation. Parameters Patients on Dialysis (n ¼ 80)
1. Items and response choices of the original version of the
Age (y) 43.9  14.2
KDQOL-SF were independently translated into Moroccan by 2
Sex ratio 0.7
translators whose first language is Moroccan. Following this, a
Peritoneal dialysis (%) 22
seminar including translators, nephrologists, psychiatrists, and a
Hemodialysis (%) 78
sociologist was organized. All the options were reviewed, prob-
Educational level (%)
lems with specific terms and differences in the cultures of the
Illiterate 28
countries were resolved, and a consensus version of the ques-
Elementary 22
tionnaire was made. After this meeting, the translators inde-
High school 23
pendently rated the level of difficulty of the translation between
College 27
0 (not at all difficult) and 100 (extremely difficult).
Civil status: married (%)
2. Two external translators evaluated the equivalence of each item
Yes 61
and response scale according to a scale from 0 (“not at all
No 39
equivalent”) to 100 (“exactly equivalent”).
Duration on dialysis (mo) 104.8  120
3. The Moroccan version of the questionnaire was tested in a
Cause of kidney disease (%)
sample of 10 patients on hemodialysis to detect comprehension
Glomerulonephritis 26
problems. Mean patient age was 39  13 years (20e57 years), 6
Diabetes 14
were males, and 8 had not completed elementary school or were
Tubulointerstitial nephritis 18
illiterate. The test took the form of face-to-face interviews
Vascular 5
immediately followed by retrospective interviews about compre-
Unknown etiology 34
hension problems and choices among a number of alternative
Other 3
renderings.
KDQOL-SF 1.3 IN AN AFRICAN COUNTRY 1297

item’s correlation with its intended scale would be at least two Backward Translation. The backward translation caused
standard errors greater than its correlation with other scales. few problems. A few words were corrected before the tests.
Internal Consistency Reliability and TesteRetest Reliability. Cronbach
a coefficient was used to assess internal consistency reliability. As
recommended by Nunnally [14], a Cronbach value of 0.70 was taken Field Test
as an indicator of adequate internal consistency reliability.
Testeretest reliability was assessed by convenience sample (n ¼
Completeness of Data. Completeness at the scale level
20) of the original respondents. The same questionnaire was was of 100% except for portions on dialysis staff encour-
administered to these patients after 10 to 14 days. Testeretest agement (99%) and sexual function (40%).
reliability was measured using intraclass correlation coefficient. Floor and Ceiling. The scales work status, role limitations
Construct Validity. Construct validity was assessed by comparing caused by physical problems, and role limitations caused by
scales of KDQOL-SF with overall health rating by means of the emotional problems suffered from high percentage of floor
Pearson and Spearman correlation coefficient. scores, whereas social support dialysis and staff encour-
External Discriminant Validity. External discriminant validity as- agement had a high percentage of ceiling scores (Table 2).
sesses the ability of the KDQOL-SF subscales to differentiate Multitrait/Multi-item Correlations, Internal Consistency
between patient groups with different clinical characteristics.
Reliability, and TesteRetest Reliability. The item internal
We used the t test to examine the differences of QOL scores in
subgroups of patients based on sex, educational level, marital
consistency, corrected for overlap, was above 0.4 for 94% of
status. We also looked at the correlations of scales scores with items. Correlation of items within subscales was higher than
age, and dialysis duration by using Pearson and Spearman that of items outside subscales in 87% of cases. Internal
correlations. consistency reliability was adequate, with Cronbach a values
The SPSS 13 statistical package for Windows (SPSS, Chicago, Ill, above 0.70 for all scales except 3 dimensions: quality of
United States) was used for statistical analysis. social interaction (0.67), work status (0.38), and cognitive
function (0.57; Table 2). Cronbach a did not improve after
RESULTS removing 1 item from quality of social interaction and
Translation Procedure cognitive function scales. No item could be removed from
work status scale as it only consisted of 2 items.
Forward Translation. Difficulty mean rates ranged from
The intraclass coefficient correlation of the kidney
0 to 60 with an average difficulty rating of 13.1  3.5 (results
diseaseetargeted scales ranged from 0.67 (pain) to 0.9 (en-
not shown). Items and response choice equivalence between
ergy/fatigue, symptom/problems and overall health rating;
the Arabic and the US version ranged between 75 and 100,
Table 2).
and the mean equivalence rating was 93.3. Cultural adap-
Construct Validity. Health rating was significantly corre-
tation concerned some activities rather uncommon in
lated with all KDQOL-SF scales except sexual function and
Morocco like “pushing a vacuum cleaner,” “playing golf,”
dialysis staff encouragement and patient satisfaction scales
and “bowling” (item SF3b), which needed to be replaced by
(Table 3).
activities requiring the use of similar body parts. Changes
External Discriminating Validity. Table 4 shows the cor-
also involved distances that were rendered in meters rather
relation coefficients between the scales of the KDQOL-SF
than blocks and miles (items SF3g, SF3h, SF3i).
and age and dialysis duration. There are significant
Lexical problems were met with the following words:
correlations between age and 5 subscales of the KDQOL-
 Physical health as the word health implies physical health SF: physical functioning (r ¼ 0.27; P ¼ .006), energy/
in Moroccan. It was finally rendered by your health (ie, of fatigue (r ¼ 0.33; P ¼ .001), work status (r ¼ 0.23;
your body). P ¼ .023), burden of kidney disease (r ¼ 0.22; P ¼
 Activities rendered by matters, things to do. It was .037), overall health rating (r ¼ 0.23; P ¼ .024).
preferred to a word-for-word translation, as the seem- Duration of dialysis correlated significantly with 6 scales
ingly equivalent word is too formal. of the KDQOL-SF: pain (r ¼ 0.27; P ¼ .008), energy/fa-
 Dissatisfied changed to not at all satisfied and then tigue (r ¼ 0.26; P ¼ .01), work status (r ¼ 0.29; P ¼
somewhat dissatisfied was rendered by not very satisfied. .004), sexual function (r ¼ 0.28; P ¼ .09), sleep (r ¼ 0.26;
 Definitely true and definitely false, respectively, rendered P ¼ .001), and overall health rating (r ¼ 0.23; P ¼ .022).
by 100% true and 100% false. We also compared mean KDQOL-SF scores in groups
Syntactic changes were often necessary when there were expected to differ in their QOL (Fig 1). Regarding gender,
differences in structure between the English and the Arabic men scored significantly higher than women on symptom/
sentence. Few words were changed during the pilot test and problem, cognitive function, physical functioning, social
some explanations were added in parenthesis (ie, “You functioning, and pain (Fig 1A). Literate patients compared
respond after a delay to things that were said or done with illiterate patients showed significant higher scores on 5
around you” was added in parentheses in item SF13b). The scales: burden of kidney disease, work status, role limita-
patients were a bit puzzled by the item SF11b where they tions caused by physical problems, role limitations caused by
were asked if their health was “excellent.” The interviewers emotional problems, and energy/fatigue (Fig 1B). Illiterate
explained that they were asked about their subjective point patients showed significant higher scores on dialysis staff
of view and not about their medical state. encouragement and patient satisfaction. Regarding marital
1298 RHOU, EZAITOUNI, OUZEDDOUN ET AL

Table 2. Scores Obtained for the Moroccan Version, Percentage of Floor and Ceiling, Internal Consistency, and TesteRetest Reliability
Dimensions No. of Items Mean  SD Floor (%) Ceiling (%) Cronbach a Intraclass Correlation

Physical functioning 10 68  23 2.1 6.3 0.86 0.89


Role limitations caused by physical problems 4 33  38 46.3 14.7 0.81 0.81
Pain 2 67  30 5.3 29.5 0.89 0.67
General health perceptions 5 42  23 1.1 0 0.71 0.84
Emotional well-being 5 61  20 0 3.2 0.83 0.87
Role limitations caused by emotional problems 3 43  40 35.8 25.3 0.74 0.83
Social functioning 2 66  25 1.1 17.9 0.7 0.8
Energy/fatigue 4 51  21 0 0 0.8 0.9
Symptom/problem 12 66  20 0 6.3 0.82 0.9
Effects of kidney disease 8 63  22 11 5.3 0.8 0.88
Work status 2 40  37 37.9 18.9 0.38 0.82
Cognitive function 3 73  20 0 12.6 0.57 0.85
Quality of social interaction 3 74  22 0 24.2 0.67 0.8
Sexual function 2 73  31 3.2 16.8 0.9 0.81
Sleep 4 64  21 2.1 3.2 0.74 0.84
Social support 2 83  24 0 55.8 0.7 0.78
Burden of kidney disease 4 43  29 7.4 3.2 0.77 0.88
Dialysis staff encouragement 2 85  21 2.1 47.4 0.82 0.81
Patient satisfaction 1 57  24 3.2 13.7 NA 0.87
Overall health rating 1 59  22 3.2 9.5 NA 0.9
Abbreviations: NA, not applicable for a single-item measure; SD, standard deviation.

status, no significant differences were observed for scores of The guidelines established by the authors are binding and
married and unmarried patients (results not shown). led to a long translation process but each step of the trans-
lation procedure was fundamental to improve the quality of
DISCUSSION
translation and adaptation of the original KDQOL-SF1.3 to
our setting.
To our knowledge, this has been the first study to evaluate The forward translation was done by 2 translators, whose
the reliability and validity of the KDQOL-SF among dialysis first language is Moroccan according to the KDQOL group
patients in an African country. This questionnaire would specifications; but the consensus version of the questionnaire
then give information about QOL in this continent and was made in the presence of nephrologists, psychiatrists, and
allow international comparisons of QOL in dialysis.
Table 4. Correlation Coefficients (With P Values) Between the
Table 3. Correlation Coefficients (With P Values) Between Kidney Disease-Targeted Scales and Clinical Parameters of the
the Kidney Disease-Targeted Scales and the Overall Health Patients
Rating Scale
Dialysis
Overall Scales Age Duration
Health
Dimensions Rating P Value Physical functioning 0.27* 0.13
Role limitations caused by physical problems 0.15 0.16
Physical functioning 0.53 <.001
Pain 0.15 0.27*
Role limitations caused by physical problems 0.45 <.001
General health perceptions 0.17 0.18
Pain 0.51 <.001
Emotional well-being 0.004 0.04
General health perceptions 0.52 <.001
Role limitations caused by emotional problems 0.189 0.13
Emotional well-being 0.29 .004
Social functioning 0.036 0.1
Role limitations caused by emotional problems 0.36 <.001
Energy/fatigue 0.33* 0.26*
Social functioning 0.28 .007
Symptom/problem 0.07 0.054
Energy/fatigue 0.49 <.001
Effects of kidney disease 0.13 0.052
Symptom/problem 0.55 <.001
Work status 0.23* 0.29*
Effects of kidney disease 0.32 .002
Cognitive function 0.04 0.03
Work status 0.38 <.001
Quality of social interaction 0.07 0.1
Cognitive function 0.23 .02
Sexual function 0.099 0.28*
Quality of social interaction 0.23 .02
Sleep 0.13 0.26*
Sexual function 0.16 .35
Social support 0.038 0.13
Sleep 0.32 .002
Burden of kidney disease 0.22* 0.06
Social support 0.4 <.001
Dialysis staff encouragement 0.07 0.02
Burden of kidney disease 0.36 <.001
Patient satisfaction 0.006 0.08
Dialysis staff encouragement 0.13 .2
Overall health rating 0.23* 0.23*
Patient satisfaction 0.12 .3
*P < .05 for the correlation.
KDQOL-SF 1.3 IN AN AFRICAN COUNTRY 1299

Fig 1. Mean Kidney Disease Quality of


LifeeShort Form scores for categories of pa-
tients: (A) male vs female groups; (B) illit-
erate vs educated patients. PF, physical
functioning; RP, role limitations caused by
physical problems; P, pain; G, general
health perceptions; EN, energy/fatigue; RE,
role limitations caused by emotional prob-
lems; SF, social functioning; E, emotional
well-being; SP, symptom/problem; EF, ef-
fects of kidney disease; W, work status; C,
cognitive function; Q, quality of social interac-
tion; SX, sexual function; S, sleep; SS, social
support; B, burden of kidney disease; D, dial-
ysis staff encouragement; PS, patient satis-
faction; O, overall health rating. *P < .05.

a sociologist. This multidisciplinary participation was not value was very low (0.38). Dutch, Hungarian, French, and
imposed by the KDQOL group but was deemed necessary to Spanish studies also reported high proportion of floor scores
better define concepts and medical terms, as the translators and low a values in this scale [7,11,15,16]. One reason
have no contact with the medical domain. proposed in these studies was the irrelevance of the items on
The pilot test detected problematic items and inconsis- this scale for patients above retirement age. We have a
tent sentences. It also revealed a comprehension problem young population and therefore having a job is not a real-
with the concept described in item SF11b. Our patients istic expectation. On the other hand, one possible explana-
judged the term excellent inappropriate when talking about tion could be the high percentage of unemployment in our
their health. developing country at the origin of discordance of the
The statistical analysis provides satisfying psychometric answer to both items: patients have no paying job but their
properties. Items generally correlated with their corre- health does not keep them from working. Another expla-
sponding scales more than with other scales. Testeretest nation could be difficulty to understand and answer item
correlations were satisfactory. Internal consistency reli- SF21 because of its negative form (keep you from) in a
ability of all scales was good in comparison with other dialysis population with low cognitive function. Such a
countries (Table 5), except 3 dimensions: work status, comprehension problem was not related, however, during
cognitive function, and quality of social interaction. the pilot test. Anyway, the interpretation of the scores on
The work status scale was the most problematic scale. A the work status scale in Moroccan version must be made
high proportion of patients reported floor level scores and a with caution.
1300 RHOU, EZAITOUNI, OUZEDDOUN ET AL

Table 5. International Comparison of Internal Consistent Reliability A


Morocco USA [6] France [11] Spain [16] Japan [8]

Physical functioning 0.86 0.92 0.89 0.87 0.9


Role limitations caused by physical problems 0.81 0.87 0.78 0.89 0.88
Pain 0.89 0.87 0.8 0.81 0.83
General health perceptions 0.71 0.78 0.81 0.73 0.8
Emotional well-being 0.83 0.8 0.84 0.88 0.84
Role limitations caused by emotional problems 0.74 0.86 0.82 0.88 0.92
Social functioning 0.7 0.87 0.64 0.7 0.73
Energy/fatigue 0.8 0.9 0.83 0.85 0.81
Symptom/problem 0.82 0.84 0.85 0.79 0.81
Effects of kidney disease 0.8 0.82 0.84 0.78 0.79
Work status 0.38 0.83 0.38 0.46 0.69
Cognitive function 0.57 0.68 0.85 0.76 0.73
Quality of social interaction 0.67 0.83 0.48 0.42 0.35
Sexual function 0.9 0.89 0.9 0.92 0.92
Sleep 0.74 0.9 0.72 0.67 0.61
Social support 0.7 0.89 0.75 0.57 0.76
Burden of kidney disease 0.77 0.83 0.86 0.71 0.81
Dialysis staff encouragement 0.82 0.9 0.92 0.78 0.8
Patient satisfaction NA NA NA NA NA
Overall health rating NA NA NA NA NA
Abbreviation: NA, not applicable for a single-item measure.

Cronbach a for the cognitive function scale did not reach are warranted to confirm our results and to determine why
the recommended value. This scale’s a was notably lower some items and scales function differently in Morocco and
both in the original and some published international vali- the United States. Testing of the longitudinal validity of the
dation studies [6,15,17]. instrument in future studies would also be important if it
Sexual function was also problematic. Completeness rate would reflect clinical changes over time.
was low for this scale (40%). One possible explanation is
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