ORIGINAL ARTICLE

Assessing the quality of life of adolescents

with diabetes: using the SEIQoL, DQoL,
patient and diabetes specialist nurse ratings
Julian Walker and Clare Bradley*

ABSTRACT
This pilot study aimed to evaluate the quality of life (QoL) of adolescents with type 1 diabetes mellitus using an individualised
interview measure (SEIQoL1) and a first generation diabetes-specific questionnaire (DQoL2), and to compare patients’ ratings with
those given by their diabetes specialist nurse.
When asked to name the five most important domains of life for their quality of life, adolescents with diabetes spontaneously
generated three common domains: family, friends and school. The remaining two domains varied, but could be covered by a further
seven domains. Despite knowing the patients well, the nurse had great difficulty rating their QoL, diabetes-related QoL or
identifying factors important for their QoL. For the adolescents, diabetes was not always the most important domain affecting QoL,
nor was their evaluation of their diabetes a good predictor of overall QoL. These data indicate the need for individualised
questionnaire measures of QoL, which have now been designed for routine use with adolescents with diabetes. Copyright © 2002
John Wiley & Sons, Ltd.
Practical Diabetes Int 2002; 19(5): 141–144
KEY WORDS
quality of life; adolescents; diabetes; SEIQoL; DQoL; diabetes specialist nurse

Introduction
Patient satisfaction and well-being have
been important outcomes in the evalua-
tion of new treatments such as implanted
insulin infusion pumps3 and pancreatic/
renal transplants4 for over ten years and are
now a routine part of the evaluation of
new therapies in diabetes (e.g.5,6,7).
In a recent study by Hall et al.8, low cor-
relations between patient and physician
ratings (of satisfaction, emotion and com-
munication) and differences in their mean
ratings led them to conclude that ‘physi-
cians had very limited success in estimat-
ing their patients’ opinions and feelings, in
Dr Julian Walker, DClinPsy, Honorary
Lecturer in Clinical Psychology,
Department of Psychology, Institute of
Psychiatry, Kings College, London, UK
Professor Clare Bradley, PhD, Professor of
Health Psychology, Department of
Psychology, Royal Holloway, University of
London, Egham, Surrey TW20 0EX, UK
*Correspondence to:
Professor Clare Bradley, PhD, Professor of
Health Psychology, Department of
Psychology, Royal Holloway, University of
London, Egham, Surrey TW20 0EX, UK
Received: 23 July 2001
Accepted in revised form: 18 April 2002
spite of having enduring relationships with
them’ (p. 1168). The present study aimed
to evaluate whether useful additional
information could be gained from system-
atic approaches to assessing QoL. Two
measures were examined: the Schedule for
the Evaluation of Individual Quality of
Life1 (SEIQoL) and the Diabetes Quality
of Life Questionnaire2 (DQoL). The
SEIQoL is an individualised interview
approach in which the respondent gener-
ates the domains of life that are most
important to his or her QoL and then rates
how good or bad each of these is and their
relative importance for QoL. The DQoL,
originally designed for use in the Diabetes
Control and Complications Trial
(DCCT)9,10, is a first generation diabetes-
specific questionnaire modified for use
with youths. It was designed by profes-
sionals, who attempted to cover issues of
relevance to the population concerned, but
unlike the SEIQoL it does not cater for
individuals. It is heavily biased towards
symptoms of diabetes and the areas of life
logically associated with diabetes-related
impairments and does not allow an indi-
vidual respondent to indicate whether an
item is not relevant in their case or to indi-
cate that an item is particularly important.
It was predicted that patients would
vary in terms of what was important to
individual QoL, and that diabetes may not
always be an important influencing factor.
As Newton et al.11 observed, ‘the biggest
dilemma is that whereas diabetes care is
clearly a high priority for doctors, it is
often not so for the teenager with diabetes’
(p. 20). In line with previous research, it
was predicted that a diabetes specialist
nurse (DSN) would, despite considerable
experience and knowledge of the individ-
ual adolescents, be unable to predict accu-
rately patients’ QoL because of the subjec-
tive and complex nature of this evaluation.
Method
Design
This was a correlational study of the rela-
tionships between patients’ and their DSN’s
perceptions of the patient’s QoL and other
variables. Dependent variables included:
overall QoL ratings on a visual analogue
scale (VAS) obtained from patients and
from their DSN; patients’ scores on the
DQoL2 and their domain ratings on the
SEIQoL1. Other variables measured
included time since diagnosis of diabetes,
recent HbA1 level and number of hypogly-
caemic reactions within the last month.
Sample
Of 24 potential participants approached
by letter, 22 returned postal reply slips, 19
agreed to take part, three refused and two
did not reply. Fifteen of the 19 who agreed

Pract Diab Int June 2002 Vol. 19 No. 5 Copyright © 2002 John Wiley & Sons, Ltd. 141
 ORIGINAL ARTICLE

Assessing QoL of adolescents with diabetes

Table 1. Descriptive statistics of an outpatient diabetes clinic at a general

children’s hospital to approach patients
Sex of participants 10 girls, 5 boys
attending the clinic and letters were sent to
Number of injections per day 10 twice per day, 5 four times per day 24 potential participants. All participants
were interviewed in their homes by the
Insulin delivery system 11 pen injector, 4 conventional syringes
same researcher (JW). Interviews took
Number of blood tests per day mean range = 0.7–3, mode = 2 approximately 11⁄2 hours to complete. For
Age (in years) mean = 15.19, range = 13.4–17.5 the SEIQoL, participants were asked to
generate the five most important domains
Time since diagnosis (in years) mean = 6.46, range = 0.7–11.25 in their lives. Domains were referred to as
aspects or things in life that were impor-
to take part, committed to being inter- to determine the relative importance of tant in affecting how good or bad life was
viewed within the study timescale. A larger each domain for overall QoL. A simple for them (including people as well as other
sample would have been desirable, but domain ranking system from 1 to 6 was things and activities).
would have necessitated recruitment from used in favour of other more complex Following the patient interviews, their
an additional clinic and was beyond time alternatives such as judgement analysis16 DSN was asked to make several ratings.
and resource limitations. The following or the use of a moveable pie chart17. First, to rate the patient’s overall QoL on a
inclusion criteria were used: VAS, then to give her prediction of the
Procedure rank ordering that the patient would give
● 12–17 years of age Consent was obtained from the consultant for the five domains (plus diabetes).
● type I diabetes mellitus
● injection regimen via standard syringe Table 2. Domains of Quality of Life elicited during administration of the SEIQoL
or pen injector
● written consent by participant and
SEIQoL Domains Elicited (n) General Categories
max. n =15 (number of times endorsed using
consultant.
SEIQoL method)
The DSN had 8 years of experience work- Family (15) Family (15)
ing as a liaison nurse in the children’s out-
Friends (15) Friends/Social Life (20)
patient diabetes clinic.
Social Life (3)
Measures Girl-friend/boy-friend (2)
The DQoL for Youths2 was used in con-
junction with the SEIQoL interview School (15) School (15)
approach1. It comprises 52 items with five- Dancing (1) Sports (7)
point Likert scale response options, cover-
ing four areas: impact of diabetes, worry Karate (1)
about diabetes, social/vocational worry Football (1)
and satisfaction (both satisfaction with
diabetes and general satisfaction with life). Swimming (1)
The SEIQoL is a method for measuring Horse riding (1)
individual QoL, and has been used in
Cycling (1)
other patient populations12–15 but not pre-
viously with adolescents with diabetes. Badminton (1)
Each respondent identified five domains
Cadets (1) Clubs and Organisations (2)
or aspects of life most important to their
overall QoL, which were labelled on an Scouts (1)
adjustable bar chart that allowed the Church (1) Spiritual/Religious life (1)
respondent to rate each aspect of life on a
scale from ‘as good as it could possibly be’ Part time job (2) Work/Career (4)
to ‘as bad as it could possibly be’. Career (2)
The SEIQoL was modified to include a
diabetes domain, as well as the usual five Music (4) Leisure Activities/Hobbies (7)
respondent-determined life domains. Computer (2)
Initial and final overall QoL ratings by
VAS were also elicited before and after Reading (1)
completing the SEIQoL. Overall QoL rat- Pets (3) Pets (3)
ings and domain-specific ratings were each
Weight (1) Weight (1)
made along a VAS anchored at each end
(‘as good as it could possibly be’ to ‘as bad Diabetes* Diabetes*
as it could possibly be’) as in the original
*Diabetes was an imposed domain and was present in all participants’ SEIQoL profiles.
SEIQoL. Different methods are available

142 Pract Diab Int June 2002 Vol. 19 No. 5 Copyright © 2002 John Wiley & Sons, Ltd.

Assessing QoL of adolescents with diabetes
Table 3. Means and ranges for Adolescent VAS ratings of QOL and DQOL scores
Variable
Initial QOL rating (VAS)
Final QOL rating (VAS)
Satisfaction Scale (DQOL)
Diabetes-related QOL (VAS)
Impact (DQOL)*
Worry (DQOL)*
*For impact and worry scales a higher score indicates lower worry and lower impact. For all other
scales a higher score indicates better QOL or greater satisfaction.
Second, the DSN was asked to rate the
patient’s diabetes-related QoL (i.e. the
nurse’s view of how good or bad the
patient’s diabetes was at that time given
their knowledge and experience with the
patient) on a VAS. The DSN then rated
(on a VAS) the patient’s diabetes-related
QoL as she predicted that the patient him-
or herself would rate it. Finally, the DSN
was asked again to rate the patient’s overall
QoL having just considered the various
elements in detail. All VAS ratings were
converted to percentage scores; a higher
score indicated a better QoL.
Statistical tests used were non-paramet-
ric (in view of the non-normal distribu-
tions and small sample size) and included
Spearman’s rho correlation analyses and a
Wilcoxon test. Non-significant findings
were treated with caution given the low
power (small n) and the high risk of type 2
errors. However, predicted findings signif-
icant at the 0.05 level were considered suf-
ficiently robust to report, if present in such
a small sample where type 1 errors are
highly unlikely.
Results
Table 1 shows the descriptive statistics for
the sample of 15 participants.
Table 2 shows that three of the domains
elicited from each participant for the
SEIQoL were universally regarded as
important for QoL, namely family, friends
and school. A total of 22 different domains
were elicited, which could be grouped into
a total of ten domains (including family,
friends and school) plus the diabetes
domain (see Table 2).
The findings suggested that this group
of adolescents with diabetes were generally
satisfied with their overall QoL as indi-
cated by participants’ use of the VAS on
the SEIQoL and the Satisfaction Scale on
the DQoL (seeTable 3).
With respect to how the participants’
Pract Diab Int June 2002 Vol. 19 No. 5
ORIGINAL ARTICLE
Mean (%) Range (%)
70.8 36-96
75.3 36-99
69.71 50-84
67 38-100
72.75 64-82
75.30 39-89
internal sets of scores related, diabetes-
related QoL (‘how good or bad your dia-
betes is’) on the modified SEIQoL did not
relate to overall QoL using either the ini-
tial or the final VAS rating of QoL (rho =
0.042, N = 15, p = 0.881, and rho = 0.259,
N = 15, p = 0.350, respectively). The scores
on the final VAS rating of QoL correlated
highly with the initial scores (rho = 0.784,
N = 15, p = 0.001), and did not differ sig-
nificantly (t = -1.69, df = 14, p = 0.11)
despite the appearance that the mean final
rating (75.3) was higher than the mean
initial rating (70.8).
Neither QoL overall nor diabetes-related
QoL were significantly associated with any
of the subscales of the DQoL (range: rho =
-0.134, N = 15, p = 0.634, to rho = 0.466,
N = 15, p = 0.080). However, the DQoL
subscale of worry about diabetes correlated
with total number of hypoglycaemic reac-
tions (rho = 0.679, N = 15, p = 0.005),
indicating that individuals who worried
more about their diabetes had fewer hypo-
glycaemic episodes and vice versa.
The nurse gave a mean rating of dia-
betes-related QoL of 70.9 (range =
28–90%). The nurse was also asked to give
an evaluation of how she thought the
patient would rate his or her own diabetes-
related QoL, and again a high average rat-
ing was made, 77.1% (range = 42–87%).
The difference between the nurse’s evalua-
tion of the patients’ diabetes-related QoL
and her prediction of how the patients
themselves would rate it was statistically
significant using a Wilcoxon matched-
pairs signed-ranks tests (z = -2.864, N =
15, p = 0.0042), and means showed that
the DSN expected patients to overestimate
their own diabetes-related QoL.
The nurse’s ratings of the patients’ dia-
betes-related QoL did not correlate with
the patients’ ratings of diabetes-related
QoL (rho = 0.084, N = 15, p = 0.767) or
with any of the subscales on the DQoL.
Copyright © 2002 John Wiley & Sons, Ltd.
The nurse was no closer in evaluating the
patients’ QoL when asked to assess how
the patient would rate their own diabetes-
related QoL (rho = 0.055, N = 15, p =
0.846). Patients’ mean diabetes-related
QoL rating was 67.0 while the nurse’s rat-
ing was 70.9.
The nurse’s ratings of patients’ diabetes-
related QoL were not significantly related
to HbA1 results (rho = -0.38, N = 15, p =
0.16). However, this negative correlation is
in the opposite direction to the positive
correlation for patients’ ratings of diabetes-
related QoL and HbA1 (r = 0.29). This
indicates that while patients tended to
associate better blood glucose control with
poorer diabetes-related QoL, the nurse
tended to assume that better blood glucose
control was associated with better dia-
betes-related QoL. The nurse’s ratings of
patients’ diabetes-related QoL were also
not significantly related the total number
of hypoglycaemic reactions reported by the
patients (rho = 0.319, N = 15, p = 0.25).
Patients ratings of QoL, whether overall or
diabetes related, did not correlate with
number of hypoglycaemic reactions (rho =
-0.267, N = 15, p = 0.335, and rho = -
0.275, N = 15, p = 0.321, respectively),
and again the correlations were in the
opposite direction to the nurses ratings.
As part of the evaluation, the DSN was
asked to rank the domains generated by
each patient as the patient would rank
them. The DSN correctly ranked 17% of
the domains (16 out of a possible 90: six
for each of 15 patients); this accuracy of
prediction is equal to chance (i.e. 1/6 =
16.6%).
Discussion
In the present study, all 15 participants
identified family, friends and school as
important domains for QoL. Diabetes was
only endorsed by four of the sample as the
most important domain for their QoL; the
remainder rated it fourth, fifth or sixth out
of six possible domains, supporting previ-
ous authors’ hypotheses11. Newton et al.11
advised that ‘the ability to listen and
understand may provide insight into more
appropriate strategies for diabetes care and
future research’ (p. 15). For the partici-
pants in this study diabetes was often less
important than social factors, family and
school in affecting their QoL. Treatment
strategies that take account of the impor-
tance of other aspects of life are more likely
to be successful.
The nurse’s estimation of diabetes-
related QoL did not become closer to
143
 ORIGINAL ARTICLE

Assessing QoL of adolescents with diabetes

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144 Pract Diab Int June 2002 Vol. 19 No. 5 Copyright © 2002 John Wiley & Sons, Ltd.