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대한소아신장학회지 제 12 권 제 2 호 2008년
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DOI 10.3339/jkspn.2008.12.2.202 1)
Development of a Quality of Life Scale For Children on Chronic Peritoneal Dialysis †
†
Min-Sup Shin, Ph.D. , Soo-Churl Cho, M.D. ‡ ‡ Jae-Yeon Jang, R.N. , Hae-Il Cheong, M.D. ‡ ‡, * Yong Choi, M.D. and Il-Soo Ha, M.D. †
‡
Department of Child Psychiatry , Department of Pediatrics
Seoul National University Childrens Hospital, Seoul, South Korea = Abstract =
Purpose : The aim of this study was to develop a quality of life scale for children on chronic peritoneal dialysis(QOL-CPD). Methods : Thirty children on chronic PD at Seoul National University Children's Hospital participated. A healthy control group included 47 elementary school children. Other patients groups are 32 children from the department of pediatric orthopedics and 28 children from the department of child psychiatry. The age range of all children was 7 to 16 years. Preliminary items of the QOL-CPD were developed and administered along with the Korean version of the Children's Depression Inventory(CDI) to all children. Results : The final QOL-CPD was constructed by excluding those items with a factor loading of less than .20, and the principal axis factor analysis was performed again. The QOLCPD demonstrated a good internal consistency with a value of .87. The dialysis and childpsychiatric groups showed significantly lower QOL scores compared to the healthy control group. In addition, the dialysis and child-psychiatric groups showed greater difficulties on physical and academic functions. For the CDI, the PD group showed a mild level of depression. Conclusion : The results of this study demonstrate the clinical utility of a newly developed self-report QOL scale specific for children on chronic PD. (J Korean Soc Pediatr Nephrol 2008;12:202-212) Key Words : Children with end-stage renal disease, PD, Quality of life, Depression, Hopelessness, Negative self-concept
ren with end-stage renal disease(ESRD). AcINTRODUCTION
cordingly, with the long-term survival of these children, the main research focus has been
Technical breakthroughs in dialysis and re-
shifting from the prolongation of life to pro-
nal transplantation over the past few decades
vision of a better quality of life(QOL) with
have enabled the long-term survival of child-
improved emotional and social well-being.
접수 : 2008년 9월 9일, 승인 : 2008년 10월 1일 책임저자 : 하일수, 서울시 종로구 연건동 28번지 서울대학교 의과대학 소아과학교실 Tel : 02)2072-2858 Fax : 02)743-3455 E-mail :
[email protected]
QOL is an essential aspect of human existence. It refers to an overall evaluation of life, both a subjective and objective index of hap- 202 -
대한소아신장학회지 : 제 12 권 제 2 호 2008년
piness and the perception of the way one is
as poor self-perception and perception by their
living life. Ferrans and Power[1] provided a
parents, low family economic status, and the
specific definition of QOL as "well-being, sa-
absence of social support[5, 6]. Measurement
tisfaction with life, personal feeling about hap-
scales such as 'the Child Health and Illness
piness or unhappiness". Padilla and Grant[2]
Profile Adolescent Edition'(CHIP-AE)[7], 'the
defined QOL of patients as "what makes life
Children's Health Questionnaire'(CHQ)[8] and
worth living, which includes physical, emotio-
'the
nal well-being, concern about body image, so-
(PedsQL)[9] that have been used to assess the
cial interest, and response to treatment". Fur-
QOL of children with chronic kidney disease,
thermore, according to Noh et al.[3], QOL is a
were not developed specifically for children on
subjective perception of well-being by each
chronic peritoneal dialysis(PD). Hence, in the
individual in physical, mental, and socio-eco-
present study we have developed a self-report
nomic domains, which consists of the emotio-
questionnaire to assess the QOL of children,
nal state, self-esteem, physical functioning,
especially those on chronic PD.
Pediatric
Quality
of
Life
Inventory'
and relationships with family and neighbors.
Since the QOL is a subjective concept, the
While the definition of QOL may vary from
perception of children can be different from
one scholar to another, it generally includes
those of their parents. In addition, parents may
the physical, psychological, emotional, social
base their ratings on comparisons with other
well-being and treatment satisfaction domains.
children or with their own experiences, which
[4]
may be susceptible to their emotional state
However, most of the studies conducted
and expectations of their children.
Therefore,
thus far have focused on the physical aspects
it is more appropriate to have the children
of the quality of life, such as physical func-
directly assess and report their own QOL.
tioning and symptoms in patients with chronic
Therefore, we developed a self-report QOL
renal failure. The psychological and adjust-
questionnaire for children with ESRD on PD.
ment problems, associated with this group of MATERIAL AND METHORDS
patients, have been relatively neglected. In addition, most studies have been limited to adult patients; there are only a few reports that address the QOL in children with ESRD [5, 6]. In fact, empirical studies on the variables that affect the QOL of the children with chronic renal failure are limited, as are the scales for assessing the QOL.
Previous stu-
dies on children with renal failure showed that psychosocial adjustment and treatment adherence were negatively influenced by depression, anxiety, a sense of hopelessness, as well
Sample and Procedure Thirty children with ESRD on PD who were attending the pediatric dialysis clinic, Seoul National University Children's Hospital participated in this study. They were 18 boys and 12 girls with a mean age of 12.6±3.7 years. We included only the children on PD because the dialysis modality may have affected the QOL, and PD is the primary modality
- 203 -
Min-Sup Shin, et al. : QOL Scale for Children on Chronic Dialysis
used in this age group. The mean duration of PD was 42.7±30.4 months. 8 children on PD (27%) had significantly shorter height and lower weight compared to their age norms. The mean height of the children in this group was two standard deviations(SD) below the age norm and their weight was one SD below the age norm. Since growth failure and psychosocial difficulties are common and significant problems of children on chronic dialysis, 32 children with Osteogenesis Imperfecta from the department of pediatric orthopedics and 28 children from the department of child psychiatry also participated in this study as the other clinical group(mean age=12.8±4.5, 11.47±2.7, respectively). The psychiatric group consisted of children who were diagnosed with attention deficit
hyperactivity
disorder(ADHD)
with
Construction of the Quality of Life Scale for Children on Chronic PD (QOL-CPD) First, the content domains of QOL-CPD were determined according to the generally accepted definition of quality of life. The content domains thereby included a "Physical Function Domain," an "Emotional Function Domain," an "Academic Function Domain," and a "Social Function Domain." Next, we delveloped the preliminary items for the QOLCPD that was thought to reflect accurately those domains after a thorough discussion among the investigators. Since the self-report scale for children should be simple and not too lengthy, the preliminary QOL-CPD consisted of 56 items using the 3-point Likert scale.
learning problems. For the healthy control
Measures and Statistical Analysis
group, 47 children were recruited from an ele-
The preliminary QOL-CPD and the Korean
mentary school in Seoul(mean age=11.7±1.6).
version of the Children's Depression Scale
Since the children were required to read and
(CDI)[10, 11] were individually administered to
complete the self-report scales reliably, child-
all children. Next, the item-total correlation
ren in the age range from 7 to 16 years, with-
was obtained for each item to exclude those
out reading problems, were included for both
showing less than a .20 item-total correlation;
control groups. There was no
then principal axis factor analysis was carried
significant difference in the mean age among
out with the remaining items. The final QOL-
the clinical and
the groups. Informed consent was obtained from all parents of the children before conducting this study. Any human data included in this manuscript was obtained in a compliance with the regulations of Seoul National University Hospital and have therefore been performed in accordance with the ethical standards reported in the 1964 Declaration of Helsinki. The demographic and laboratory data of the children with ESRD are presented in Table 1.
Table 1. Characteristics of Children on Chronic PD Variables Age(year) Hemoglobin(g/dL) Serum albumin(g/dL) Residual renal Kt/V Total Kt/V Residual renal CCr 2 (L/week·1.73 m ) Total CCr 2 (L/week·1.73 m )
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Mean(S.D)
Range
12.6(3.7) 10.6(1.7) 3.99( .41) .28( .47) 2.22(.77) 10.8(17.9)
7-16 5.3-12.9 3.30-4.70 0.00-1.88 1.30-5.35 0.0-66.9
52.8(15.0)
32.3-89.9
대한소아신장학회지 : 제 12 권 제 2 호 2008년
CPD was constructed after a process of excluding those items with the factor loading of
Validity of the QOL-CPD
less than .20 and then conducting the principal
A higher total QOL-CPD score indicates a
axis factor analysis again. In order to confirm
worse QOL as perceived by the children. The
the validity of the newly developed "QOL-
children with Osteogenesis Imperfecta were
CPD", its correlation with the CDI was calcu-
not included in the analysis because their
lated, and the differences in the mean scores
QOL-CPD mean score was nearly equal to
of the QOL-CPD among the children on PD,
that of the healthy group. The PD and child-
child-psychiatric and healthy control groups
psychiatric groups were found to have signi-
were
variance
ficantly lower QOL scores compared to the
(ANOVA) for its discriminant validity. The
healthy group (mean QOL total score=27.41,
reliability of the QOL-CPD was examined by
P
