The Zubrod performance status and the Karnofsky index in quality of

Original Article
The Zubrod performance status and the Karnofsky index in
quality of life evaluation of children with cancer
Performance de Zubrod e Índice de Karnofsky na avaliação da qualidade de vida
de crianças oncológicas
Larissa Helena Vitoriano Polo1, Marcia Wanderley de Moraes2
ABSTRACT
Objective: To describe the epidemiologic profile of children undergoing
chemotherapy and/or radiotherapy and to assess the quality of life
during treatments, by means of the ECOG scale and the Karnofsky
index. Methods: A descriptive exploratory study, with quantitative
approach. The sample consisted of children with cancer undergoing
chemotherapy or radiotherapy. Results: Twenty-four children, most
males (67%), were interviewed; chemotherapy was the primary
treatment in 56% of them. The most frequent condition was acute
lymphoid leukemia in both sexes. Chemotherapy was the treatment
modality interfering most with the quality of life, altering aspects
such as: socialization, behavior, nutrition, sleep and rest, performance
of activities. Regarding the ECOG scale, 75% of the patients who
scored 1 were symptomatic, and only 25% of patients scored 0 and
were asymptomatic. As to the Karnofsky index, 25% of patients were
asymptomatic and performed their daily activities, whereas 71%
presented with mild symptoms of the disease, yet performed their
daily activities. Conclusion: A chronic disease, like cancer, changes
some aspects in the daily routine of the children and their family.
However, individual characteristics must be respected aiming at the
child’s quality of life.
Keywords: Neoplasms; Child; Oncologic nursing; Oncology;
Ambulatory care/utilization; Quality of life; Chemotherapy; Radiotherapy
RESUMO
Objetivo: Descrever o perfil epidemiológico das crianças submetidas
à quimioterapia e/ou radioterapia e avaliar a qualidade de vida durante
os tratamentos, aplicando as escalas ECOG e o índice de Karnofsky.
Métodos: Pesquisa descritivo-exploratória, com abordagem
quantitativa. A amostra constituiu-se por crianças oncológicas em
tratamento quimioterápico ou radioterápico. Resultados: Foram
entrevistadas 24 crianças, sendo 67% do sexo masculino e destes,
56% realizavam desde tratamento primário a quimioterapia. A
patologia mais incidente foi a leucemia linfoide aguda em ambos
os sexos. Em relação à qualidade de vida, o tratamento que mais
interferiu foi a quimioterapia, alterando aspectos como: socialização,
mudanças comportamentais, nutrição, sono e repouso, realização
de atividades; quanto às avaliações da escala de ECOG, 75% dos
pacientes apresentavam-se sintomáticos com pontuação 1 e apenas
25% se apresentavam assintomáticos com pontuação de 0; quanto
ao índice de Karnofsky, apresentavam-se assintomáticos e realizavam
suas atividades normalmente, enquanto que 71% apresentavam
sinais e sintomas leves da doença, porém eram capazes de realizar
as atividades do cotidiano. Conclusão: A rotina de vida da criança e
de sua família é modificada em alguns aspectos pelo advento de uma
doença crônica como o câncer, porém, apesar destas condições,
as particularidades individuais devem ser respeitadas visando à
qualidade de vida.
Descritores: Neoplasias; Criança; Enfermagem oncológica;
Oncologia; Assistência ambulatorial/utilização; Qualidade de vida;
Quimioterapia; Radioterapia
INTRODUCTION
Malignancies are a group of disorders which have in
common the uncontrolled proliferation of abnormal
cells and may occur anywhere in the body. The most
common malignancies in childhood are leukemias,
central nervous system tumors and lymphomas(1).
Cancer treatment begins with the correct diagnosis,
which requires reliable laboratory and imaging studies.
Because of its complexity, treatment must be done in
specialized centers, and involves three major modalities,
chemotherapy, surgery and radiotherapy, used rationally
in an individualized manner for each specific tumor and
according to the extension of the disease. Currently,
Study carried out a Hospital Israelita Albert Einstein – HIAE, São Paulo (SP), Brazil.
Nurse from Faculdade de Enfermagem do Hospital Israelita Albert Einstein – HIAE, São Paulo (SP), Brazil.
1
Master’s degree in Nursing from Faculdade de Enfermagem do Hospital Israelita Albert Einstein – HIAE, São Paulo (SP), Brazil.
2
Corresponding author: Larissa Helena Vitoriano Polo – Avenida Nossa Senhora de Sabará, 4.350 – Bloco 6 – apto. 72 – Jardim Palmares – CEP 04447-901 – São Paulo (SP), Brasil – Tel.: 11 5611-3306
– e-mail: [email protected]
Received on Mar 6, 2009 – Accepted on Jul 30, 2009
einstein. 2009; 7(3 Pt 1):314-21
The Zubrod performance status and the Karnofsky index in quality of life evaluation of children with cancer
70% of children with cancer may be cured if diagnosed
early and treated in specialized centers(1).
Some instruments that measure the quality of life
of patients were devised to assess the response to the
treatment. Important parameters, such as the degree
of physical activity, symptoms of the disease and the
amount of help required are assessed(2).
In addition, these evaluations allow the oncology
nurse to determine tolerance and response to treatment,
and they help defining the duration of the treatment
employed. The nurse performs several activities in order
to meet the needs of the child and family, establishing
contact with the child and the family to explain their
doubts about what the nursing team will do. This
information is very important when a treatment is
planned, reviewing the diagnosis and prognosis of the
disease(3).
The instruments or scales most used are the
Karnofsky index and the ECOG (Eastern Cooperative
Oncology Group) or Zubrod performance status.
The Karnofsky index describes the levels of activity
and independence using scores from 0 to 100. Zero
indicates death and 100, normal physical performance
and attitude to perform normal activities(2). It is the most
used instrument for prognosis of cancer therapy because
it is a measure of performance for the classification of
a person’s skills for an activity, assessing the patient’s
prognosis after a certain therapeutic procedure and
determining its capacity for the treatment(4).
Another instrument used is the ECOG, which
establishes scores from 0 to 5. Zero score indicates that
the patient is fully active and able to perform normal
activities and score 5 is given to the dead patient. It is
also known as the “Zubrod Performance”, a more recent
and simplified instrument to measure the quality of life
of a cancer patient. It was elaborated by the ECOG of
the United States of America and validated by the World
Health Organization (WHO)(2). The main function of
the ECOG scale is to rate cancer treatments, taking
into account the patient’s quality of life. It assesses
the outcome of the patient’s capacities in its daily life,
keeping its autonomy at its fullest(2).
The patients who are fully active and have mild
symptoms respond better to the treatment and survive
longer than those who are less active or have severe
symptoms. A clear goal of the performance scales
could be sorting those patients into clinic-therapeutic
study groups, comparing the different protocols of
chemotherapy and determining treatment efficacy(5).
As important as cancer treatment itself, is the care
delivered to the social aspect of the disease, because
the child is in the family context. Nursing care requires
skills to assess the child’s condition, based on the
315
knowledge about what childhood cancer is and also on
the technological advances of treatment, in addition to
the psychosocial and family aspects that involve it(3).
Chronic disease can be a stressor on the patient and
the family in different ways, as well as living with the
disease and its symptoms. In this case the assessment
of quality of life regarding the child’s and adolescent’s
health, the treatment of cancer or those who survived
this experience is the first step for assessing the
potential impact in the general quality of life of the
individual(6-7).
The scales help nurses to assist patients, and are
extremely important in oncology nursing in evaluating
the response to treatment.
OBJECTIVES
To describe the epidemiologic profile of children with
cancer undergoing chemotherapy and/or radiotherapy,
and to assess the quality of life of the child with cancer
during treatments of chemotherapy and/or radiotherapy,
by applying the ECOG scale and the Karnofsky index.
METHODS
Type of study
This is a descriptive, exploratory, level I study, with a
quantitative approach.
Setting
The study was carried out in a private hospital in
the city of São Paulo, at the chemotherapy and
radiotherapy units.
Population and sample
The population was composed of children with
cancer undergoing treatment with chemotherapy or
radiotherapy at the time the data was collected.
The sample comprised the children who met
the following inclusion criteria: to be undergoing
chemotherapy or radiotherapy; to have a legal guardian
who agreed to participate in the study and signed the
informed consent form.
Instrument for data collection
The authors elaborated a questionnaire for data
collection containing the identification and five semiclosed questions dealing with fundamental aspects:
sleep and rest quality; nutrition; performance of
daily activities; humor and behavioral changes during
treatment; interpersonal relationships.
einstein. 2009; 7(3 Pt 1):314-21
316
Polo LHV, Moraes MW
At the end of the interview, ratings according to the
ECOG scale and the Karnofsky index were done, to
evaluate the quality of life of these patients.
the 16 to 18 years. The predominant age group among
females was also four to six years, with three children in
it (Figure 2).
Age group versus sex
Data collection
Data was collected after approval of this project by the
Scientific Committee of Faculdade de Enfermagem do
Hospital Israelita Albert Einstein (FEHIAE) and by
the Research Ethics Committee of the Institution. The
authorization of the sector coordinator where the data
were gathered was also obtained. Data collection was
conducted in 2008, by the first author, who explained the
objectives of the study and applied the scales, after the
legal guardians had agreed to participate in the study and
signed the informed consent form. These instruments
were gathered right after they were answered.
The authors committed to use the survey data solely
for this study, abiding to the ethical and legal principals
involved in research with human beings.
RESULTS
Part 1: identification
Twenty-four children were interviewed, 16 (67%) were
male and 8 (33%) female. Among males, seven children
(44%) had radiotherapy as the primary treatment and
nine (56%), chemotherapy. Among females, seven
children (87%) had chemotherapy as the primary
treatment and only one (13%) was submitted to
radiotherapy (Figure 1).
43,75
56,25
Sex
Male
11
10
Amount
8
6
4
12,5
2
2
1
1
1
0
1a 3
4a 6
7a 9
10 a 12 13 a 15 16 a 18
Age group
Male
Female
Figure 2. Identification of age group per sex
As to the type of treatment, the four to six year-old
patients underwent the two treatments separately (17
children in total). Among them, 13 were submitted to
chemotherapy and four to radiotherapy (Figure 3).
Treatment versus age
13
14
12
10
8
6
4
2
0
4
2 2
1a3
Female
3
3
2
Amount
Sex versus treatment
12
1
1
4a6
87,5
7a9
10 a 12
13 a 15
1
16 a 18
Age
Radiotherapy
0
20
40
60
80
100
Percentage
Chemotherapy
Figure 3. Type of treatment per age group
Radiotherapy
Chemotherapy
Figure 1. Type of treatment per sex
The predominant age group among males was four
to six years, with 11 children in it. Three children were
aged from one to three years, one child was in the sevennine year group, one in the 13 to 15 years and one in
einstein. 2009; 7(3 Pt 1):314-21
Regarding the types of cancer, there was a difference
between the sexes; males have a higher incidence of
acute lymphoid leukemia (ALL) with seven patients
(44%) affected. ALL occurred in seven female patients
(87%). (Figures 4-5)
Analyzing the types of cancer according to age
groups, ALL occurred in seven patients aged four to
The Zubrod performance status and the Karnofsky index in quality of life evaluation of children with cancer
six years, in four from seven to nine years and in three
patients from one to three years (Figure 6).
As to companions, 65% of male patients had the
mother with them and 10%, the grandparents; 35% of
females had the mother as the companion, 10%, the
grandparents and only 5% were fathers and siblings
(Figure 7).
Male
6%
13%
6%
6%
6%
13%
317
44%
6%
Part 2: quality of life assessment
Data regarding quality of life will be presented as topics,
according to the pattern suggested by the Zubrod and
Karnofsky indexes.
Craniopharyngioma
Cerebral medulloblastoma
AAL
PNET
AML
Ependymoma
Brain tumor NOS
Neuroglioma
Quality of sleep and rest
Among males, 38% had and excellent quality of sleep,
37%, good and 25%, regular. The distribution of sleep
quality among females was similar, excellent and good,
50% each (Figure 8).
As to quality of sleep according to the type of
treatment, 62% of patients undergoing radiotherapy
referred excellent quality of sleep, and 25%, good, as
informed by the companion. Regarding those who
underwent chemotherapy, 50% of patients reported
regular quality of sleep and 25% each, excellent and
good (Figure 9).
Figure 4. Diseases in males
Female
13%
87%
Nutrition
As regards having three daily meals, 10% of children
undergoing radiation therapy refused to have the
meals, according to parents and/or companions, while
100% of those undergoing chemotherapy ate the
three daily meals. In relation to nausea and lack of
appetite, 62% of patients under radiotherapy and 75%
of children under chemotherapy had these symptoms
(Figure 10).
Craniopharyngioma
Cerebral medulloblastoma
AAL
PNET
AML
Ependymoma
Brain tumor NOS
Neuroglioma
Figure 5. Diseases in females
Diseases per age
8
7
6
5
4
3
2
1
0
7
om
gli
uro
Ne
rN
OS
1
Br
ain
tu
mo
dy
mo
en
1
a
1
ma
1
L
ET
PN
1
Ep
llo
du
me
2
Ce
re
br
al
AA
ma
sto
bla
ryn
ha
iop
an
Cr
1
L
1
gio
ma
1
4
AM
3
1-3
4-6
7-9
10 - 12
13 - 15
16 - 18
Figure 6. Diseases per age group
einstein. 2009; 7(3 Pt 1):314-21
318
Polo LHV, Moraes MW
Performance of daily activities
Regarding daily activities such as playing with friends
and going to school as well as feeling fit for these tasks,
only 10% of patients undergoing radiotherapy and 12%
of those undergoing chemotherapy did not perform
such activities (Figure 10).
Companions versus sex
10
Companions
Grandparents
10
5
Brother
5 10
Father
65
Mother
0
20
35
40
60
80
100
Percentage
Male
Female
Behavioral changes
This item involves some aspects, such as feeling happy/
motivated, with no drive, revolted, crying a lot, acting
shy and ability to cope with the disease.
The companions reported that 100% of children
undergoing chemotherapy had some behavioral change,
while 80% of children submitted to radiotherapy
reported some change (Figure 10).
Figure 7. Companions per sex
Sex versus quality of sleep
0
Quality
Poor
25
Regular
3
50
38
50
Good
Excellent
0
20
40
60
80
100
Percentage
Male
Female
Figure 8. Quality of sleep per sex
Treatment versus quality of sleep
0
Poor
12,5
Regular
50
25
Good
25
62,5
Excellent
0%
20%
40%
Radiotherapy
Chemotherapy
Figure 9. Quality of sleep per treatment
einstein. 2009; 7(3 Pt 1):314-21
25
60%
School attendance
Ninety percent of children undergoing radiotherapy did
not go to school regularly because they were not at school
age. Considering children undergoing chemotherapy,
62% had normal school attendance (Figure 10).
80%
100%
Socialization
Socialization was assessed according to some aspects:
if the child has a good relationship with the siblings,
if it is sociable with other children and in the groups
it attends. Eighty percent of children on radiotherapy
were sociable, whereas 20% were not. However, 93%
of children undergoing chemotherapy were sociable
(Figure 10).
Performance and function scales: Zubrod performance
or ECOG and Karnofsky index.
Based on the answers to the questionnaires, the
development and function scales were obtained to
measure the quality of life of these patients during
chemotherapeutical and radiation treatments.
According to what was previously described,
the Karnofsky index describes levels of activity and
independence rated from 0 to 100. Zero indicates death
and 100 indicates normal physical performance and
fitness to perform normal activities(2).
Only 25% of patients scored 100 in the scale, that is,
they were asymptomatic and performed their activities
normally (Figure 11). Most of them, 71%, scored 90,
with mild signs and symptoms of the disease and/or side
effects of the treatment.
Seventy-five percent of patients scored 1 in the
ECOG scale, meaning that they were symptomatic,
while only 25% of patients were asymptomatic, scoring
0. Likewise the other scale, the side effects of treatments,
which somehow interfere in their quality of life but not
fully prevented them to perform the activities, were
included in this assessment (Figure 12).
The Zubrod performance status and the Karnofsky index in quality of life evaluation of children with cancer
319
Quality of life in children with cancer
20
Socialization
80
6,25
93,75
12,5
Behavioral changes
80
100
Willingness to perform
activities
100
12,5
87,5
10
Performs activities
90
12,5
87,5
Radiotherapy (no)
Radiotherapy (yes)
Chemotherapy (no)
Chemotherapy (yes)
90
10
Attends school
62,5
37,5
37,5
Nausea and lack of appetite
62,5
25
75
10
90
Eats meals
100
0
20
40
60
80
100
120
Figure 10. Quality of life of children with cancer as to nutrition, daily activities, school attendance, behavioral changes and socialization
Karnofsky index
4%
25%
71%
Asymptomatic patient – 100%
Mild signs and symptoms of the disease – 90%
Activities with effort, mild signs and symptoms
of disease – 80%
Figure 11. Karnofsky index score
Eastern Cooperative Oncologic Group-ECOG
25%
75%
Asymptomatic ( 0 )
Symptomatic ( 1 )
Figure 12. Classification in ECOG scale
DISCUSSION
According to Instituto Nacional de Câncer (INCA),
pediatric cancer represents between 0.5 and 3% of all
malignancies in most populations. By and large, the
incidence of malignant tumors in childhood is higher in
males(8).
Of childhood cancers, leukemia is the most frequent,
and ALL prevails in children in most populations. The
central nervous system tumors, which predominate in
males, occur mainly in children younger than 15 years
peaking at the age of ten years old, accounting for 20%
of pediatric neoplasms. Bone tumors are more common
in adolescents(8-11) . These findings are similar to what
was found in this study.
As for companions, the literature shows how
important the participation of parents or relatives
in caring for the child is, because when hospital care
is based on the needs of the child and not only on the
disease, allowing parents and other family members to
participate in care, thus making patients feel more at
ease and confident(12).
Regarding the quality of life of children with cancer,
in the item quality of sleep and rest, it is common to find
sleep disorders in oncological patients because of sleep
cycle inversion and also because of different causes,
such as depression, metabolic changes or use of some
drugs. Insomnia may cause anxiety and irritability in
children, and often it may destabilize the person caring
for the child because its sleep is also disturbed(13).
einstein. 2009; 7(3 Pt 1):314-21
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Polo LHV, Moraes MW
Regarding sleep according to treatment, one of the
side effects of radiotherapy is tiredness and fatigue,
which added to the stress of the disease, the daily visits
for treatment and the effect of radiation contribute for
tiredness. However, this disappears with time and may
vary from patient to patient(2,13-14) .
Nausea and vomiting are the side effects with
greater impact in the quality of life of pediatric patients
with cancer and may have severe consequences to
their health. These effects may cause refusal of
feedings, which may cause metabolic disorders and
have negative social and psychological effects(8).
Children learn how to associate food taste stimulation
to the physiologic consequences of digestion. A
typical example of this type of learning is the aversion
conditioned by the results of eating a certain kind
of food, which provokes negative consequences
like nausea and vomiting. This fact associated with
antineoplastic treatments may explain the diminished
food acceptance by patients(15).
On the other side, a sudden increase in appetite may
be related to the use of glucocorticoids, which stimulate
appetite, associated with parental incentive for the child
to eat properly, ensuring a successful treatment(8).
As to the performance of daily activities, literature
points to the concerns with physical issues and
hospitalizations, which are so important that parents
often find no options to avoid that the child/adolescent
misses school, causing school abandonment. It is
fundamental for parents to understand the importance
of schooling to their children and that the hospital
becomes a partner with specialized professionals in
order to promote schooling continuity(16).
Frequent school absenteeism reduces the child/
adolescent motivation, creating a barrier in the
relationship between them, the teachers and other
children, hindering thus school adjustment.
However, it is possible to identify facilitating
situations for adjustment and learning, by understanding
of teachers, remedial classes, trying to alleviate the
difficulties of these children to go back to school(17).
Concerning behavioral changes and socialization,
some studies report that when the chronic disease starts
in certain specific periods of development, such as when
learning to walk, this may hinder it and it may restrict,
for example, the autonomy. The several aspects involved
with drugs, food and schedules may interfere in the
child desire to control, generating apathy and passivity.
In addition, mothers and fathers often have difficulties
in imposing limits needed for behaviors(18).
The impact of treatment must be observed for
the initial and complementary orientation of therapy,
avoiding treatments which greatly reduce the quality
of life. The Karnofsky index is a physical performance
einstein. 2009; 7(3 Pt 1):314-21
scale developed at first to assess the physical capacity
in cancer patients, but its use was broadened to assess
it in other disabling chronic diseases. The ECOG is a
more recent and simplified instrument to measure a
cancer patient’s quality of life of and is very important
in studies because the level of activity of patients may
be identified by these variables, as well as the degree
of medical and nursing assistance needed. It is also
an objective way to assess tolerance and response to
treatment, which facilitates the choice of treatment to
be employed(19-20).
According to the ECOG evaluation, the majority of
patients was symptomatic, was in ambulatory treatment
and performed their daily activities, while the minority
was asymptomatic, performing their daily activities
regularly. As for the Karnofsky index, the minority of
patients was asymptomatic and performed regularly
their activities, in spite of the fact that the majority of
these patients had light signs and symptoms of disease
they were able to perform their daily activities.
CONCLUSION
The present study identified the epidemiologic profile
of these oncologic patients and evaluated their life
quality during treatments, by means of the ECOG scale
and Karnofsky index and it was possible to conclude
that the child and family daily routines are modified
in some aspects by the appearance of chronic diseases,
such as cancer, coinciding with childhood development
stages. However, despite these conditions, the individual
specificities must be respected aiming at the child’s
quality of life.
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