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Brianne M. Denning
University of Evansville
QUALITY OF LIFE IN PEDIATRIC PATIENTS WITH CANCER 2
Abstract
Assessment of quality of life in pediatric patients with cancer has become increasingly important
in nursing practice over the past several years as there are more treatment options available and
survival rates have increased. Therefore knowing how pediatric patients and families of pediatric
patients diagnosed with cancer perceive quality of life for the child is increasingly important for
nurses to know. The current literature has identified common components of quality of life in
pediatric patients with cancer. These factors that influence a child’s quality of life include
relationships with family and peers, the disease process including symptoms and treatment, and
usual activities such as attending school, being with friends, and playing sports. Additional
literature reports that parents can serve as an accurate and reliable proxy for quality of life
information depending on the age of their child. Research has also begun to investigate
interventions that can improve quality of life for pediatric patients with cancer. From the current
research the only recommended change for nursing practice is that until a universal assessment
tool is available, a tool that has been found to be reliable and accurate should be used when
The incidence of childhood cancer survival has increased significantly in recent years;
therefore, as new technologies are found and ways in which to treat a pediatric patient diagnosed
with cancer, the quality of life that children will experience needs to be taken into consideration.
In order to do this, nurses must first know what encompasses quality of life in children, more
specifically those diagnosed with cancer; therefore an accurate definition of quality of life is
critical. Hinds et al. (2004) defines pediatric quality of life during treatment for cancer as “an
overall sense of well-being based on being able to participate in usual activities; to interact with
others and feel cared about; to cope with uncomfortable physical, emotional, and cognitive
reactions; and to find meaning in the illness experience” (p. 767). This definition encompasses
the six domains that were found during two pilot research studies, both of which are included in
Another critical part in regards to quality of life of a pediatric cancer patient is how to
accurately measure quality of life for these children. Once it can be measured in patients with
cancer, changes in practice can be implemented such as routinely assessing quality of life in
these patients. Along with this is whether or not parents can reliably indicate what their child is
experiencing at any moment. Parents may be the only source of information if a child is too
young to understand the evaluation tool or answer the questions in an appropriate manner. In
this instance the parents are acting as a “proxy” for their child and it is crucial to determine if the
proxy report is legitimate and can be used to make clinical decisions. The quality of life
information may need to come directly from the child, since quality of life is a subjective
QUALITY OF LIFE IN PEDIATRIC PATIENTS WITH CANCER 4
measurement. Knowing this information will allow nurses to know sources where quality of life
Knowing quality of life is important to all healthcare professionals, but especially nurses.
After the patient’s perception of quality of life has been determined, better interventions can be
identified to improve quality of life for the patient. Also knowing differences in quality of life
throughout the ups and downs of cancer can help nurses determine important factors that
influence quality of life. Once these key factors have been identified, we can then begin to find
All of this brings about the question “how do pediatric patients and families of pediatric
patients diagnosed with cancer perceive quality of life for the child?” In order to answer this
question it was determined that the population of interest would be pediatric patients with cancer
as well as their families so that parental proxy of quality of life could be included. The children
must have received a diagnosis of cancer or be receiving treatment in order to determine the
perception of quality of life of the patient as observed by the patient themselves or their family
Search Strategy
In order to find the research studies that have already been done, EbscoHost was used to
search Academic Search Premier, CINAHL Plus with Full Text, Health Source:
nursing/academic edition, and Medline. Search words “quality of life,” “cancer,” and
“pediatrics” were used to find 112 articles. These results were refined to include only those
articles where full text was available and those that were published within the past five years,
reducing the articles to 22. Of the remaining articles, only two accurately addressed the topic,
While reviewing references from these two articles as well as several non-research
articles, the Journal of Pediatric Oncology Nursing was frequently a source. The online version
of the Journal of Pediatric Oncology Nursing was found using the search engine Google. At the
website (http://jpo.sagepub.com/) the words “quality of life” were entered into the search bar,
yielding 286 articles, 6 of which are freely available to the public. A quick search of those that
are freely available yielded the final two articles included in this literature review. The other
Literature Review
For each study the population of interest was the pediatric cancer patient. Convenience
samples of the population were used in all of the studies. Three of the studies in these research
articles have population sizes between 13 and 23. The small sample size was seen in both
qualitative and quantitative research designs and in studies investigating different components of
quality of life (Hicks, Bartholomew, Ward-Smith, & Hutto, 2003; Hinds et al., 2004; Ward-
Smith, McCaskie & Rhoton, 2007). The largest sample size (N=282) was seen in the study
Study Design
All of the studies investigated quality of life, though each study was slightly different in
overall design. One of the articles consisted of two pilot studies, which built on each other. The
first pilot study used one time interviews to determine questions that would be used in the second
half of the study. The second pilot study was longitudinal in design. In addition to the pilot
study, one of the other studies took a longitudinal approach, while the other two collected data
Two studies were qualitative in design, using interviews to gather information. One of
these studies was the set of pilot studies. Within the studies that used interviews, individual
interviews were used exclusively in one study, while the first pilot study used both pair and
individual interviews and the second used only individual interviews to collect the data. Each of
these studies focused on what the pediatric patient felt their quality of life was following their
diagnosis and subsequent treatment of cancer (Hicks et al., 2003; Hinds et al., 2004).
The final two studies were quantitative in design and evaluated different aspects of
quality of life. The first determined whether or not parents can adequately provide an assessment
of their child’s quality of life (Chang & Yeh, 2005). The second examines one way to intervene
in order to improve quality of life specifically in adolescents who had been diagnosed with and
were currently undergoing treatment for cancer (Ward-Smith et al., 2007). Both studies address
Three of the studies focused on the different aspects of life that are affected by a
diagnosis of cancer for the pediatric patient. Two of the studies used a qualitative design, asking
questions in an interview setting to come up with components of quality of life (Hicks et al.,
2003; Hinds et al., 2004). The third study was quantitative in design and used similar aspects of
quality of life in order to determine if parents could adequately assess their child’s quality of life
(Chang & Yeh, 2005). The common aspects addressed by each of these studies were social
interaction, including family and peer relationships, the disease process including treatment and
symptoms, and usual activities such as attending school, participating in activities and sports, and
The qualitative studies concluded that the disease, including its symptoms, affected the
child’s quality of life (Hicks et al., 2003; Hinds et al., 2004). The symptoms caused the children
QUALITY OF LIFE IN PEDIATRIC PATIENTS WITH CANCER 7
to be tired and thus not participate in the usual activities of childhood such as playing on the
playground, playing sports especially those requiring lots of energy, and being with their friends.
In one of the studies, it was also noted that the intravenous access device, most often a port, that
was used to administer medications made it difficult to participate in these activities as the site
could not be hit or damaged. Some children even expressed that their family discouraged them
from playing sports especially contact sports so as to not damage the port or get too fatigued.
Not participating in such activities which had once been a large part of their lives decreased their
quality of life.
Family is another area identified as an important aspect of the pediatric patient’s quality
of life (Hicks et al., 2003; Hinds et al., 2004). Many children in the studies expressed that they
felt that their relationships within their families had changed. Parents may change work
schedules to accommodate doctor’s appointments and treatment regimens as well as allow for at
least one parent to be with the child all the time. Other parents had to work additional jobs to
pay for medical bills as well as travel to and from the hospital.
Relationships between friends were also addressed in one of the articles with some of the
study participants noting that they now had friends and “real” friends (Hicks et al., 2003). These
children said that their “real” friends didn’t mind when they lost their hair. It was noted that one
child no longer talks to the other children anymore because they laughed and pointed when the
child’s hair fell out as a result of treatment. In one study, hair loss was seen as having a great
impact on the child’s quality of life; that the researchers included it as one of the main aspects of
treatment that affected the child’s quality of life. During their interviews the children stated that
it affected them most often at school where students are not allowed to wear caps. Their changed
appearance made them different than all of the other children resulting in other students making
Another commonality between these studies was their focus on variations from usual
activities (Hicks et al., 2003; Hinds et al., 2004). As mentioned above, many of the children
within the two studies were discouraged by parents to participate in usual activities. The
children may not have been able to play with their friends or, in some cases, see their friends, go
to school everyday as they had done previously, or participate in specific activities such as
swimming or running.
Accuracy of parent proxy information can be critical if the pediatric patient is unable to
subjectively state their own quality of life. One of the studies addresses this critical issue and
found that for children under the age of 12, a parent can adequately serve as an indicator of
quality of life; however, for adolescent pediatric patients ages 13 to 18, it was found that the
patient’s self-report was not comparable to a parent’s proxy-report (Chang & Yeh, 2005). In the
case of the adolescents, it was found that parents reported better quality of life for their children
than the children’s self-reports showed. The study concluded that members of the healthcare
team can only use an adolescent’s parent’s quality of life information as a supplement to the
The final study involved adolescents attending a retreat to see if this intervention could be
used to help improve quality of life in those who had been diagnosed with cancer (Ward-Smith et
al., 2007). At the weekend retreat activities consisted of a variety of structured and unstructured
events including swimming, playing games, team building activities, and getting to know other
participants. There were also activities to promote increased self-esteem and provide peer
support. The study found that attending the retreat did not improve quality of life in the
adolescents but was beneficial in areas such as self esteem and confidence.
QUALITY OF LIFE IN PEDIATRIC PATIENTS WITH CANCER 9
The current literature in the area of pediatric quality of life for those diagnosed with
cancer contains some gaps. One of the gaps is that one tool is not universally used to measure
quality of life in a pediatric cancer patient. Many tools are available to determine quality of life
in a child or adolescent. Some tools are available for adults with cancer however none exist for
this specific population (Hinds et al., 2004). Without a universal tool for measuring quality of
life it is hard to implement routine assessment of quality of life in these patients. Once a
universal tool is developed, it should be tested on large samples of patients with different types
of cancer.
The current literature is filled with studies that contain small sample sizes, convenience
samples, and are specific to one type of cancer. With such restrictions in the literature, it is
difficult to accurately assess what is being studied, whether it is defining what is encompassed
within quality of life, how to assess quality of life, or interventions to use to improve quality of
life. Therefore, more research should be conducted using large, random samples which include
all pediatric patients with cancer throughout their diagnosis and treatment plan before any
In the pediatric population the parents or other guardian will more often than not be
involved. Therefore the research about whether or not parents or guardians can reliably assess
quality of life needs to be expanded. The research described above made conclusions about the
age of the child and whether or not a parental assessment is reliable. Additional research about if
the relationship between the child and the parent or guardian has an affect on adequacy of the
measurement quality of life in the child could provide further insight on which proxies would be
It will also important to note that the current literature is not focused on one specific
aspect of quality of life. Some of the research is attempting to find interventions to improve
quality of life in this population while others are still trying to find an instrument to accurately
assess a pediatric patient with cancer’s quality of life. The latter must be done to adequately
measure changes in quality of life in order for the research to have an impact on current practice.
Based off of the current research when evaluating a pediatric patient with cancer’s quality
of life it will be important to use a tool that has been shown to be both valid and reliable as there
is not yet a universal assessment tool for this use. Further research and development of a
universal tool that would evaluate quality of life for this population will be necessary in order to
confidently implement a change of practice that would require evaluation of quality of life at
specific times in during the course of the child’s illness. Such intervals would include upon
diagnosis, prior to treatment, periodically during the course of treatment, following treatment,
Additionally once routine assessment is implemented and even now as a tool is still being
developed it will important for nurses to take into account whether or not what parents say about
their child’s quality of life is reliable. As the literature states above parents can give a reliable
proxy assessment of quality of life for their children diagnosed with cancer under the age of 12,
but cannot be seen as a reliable source for children 13 and older. In practice, it is likely that
information received from a parent would be regarded to the same extent despite the child’s age.
Therefore it is important for nurses to evaluate the child’s age, but also look at the relationship
between the proxy and the pediatric patient though as stated above more research would be
Only after routine screening is implemented will appropriate interventions to improve the
quality of life in pediatric patients with cancer change current nursing practice. With out routine
screening that is widely accepted and put into practice it will be difficult to evaluate which
interventions are most effective for the most children. After effective interventions are found
they can be applied to everyday situations. See the appendix for further information on ways
Some barriers that nurses may encounter while using the best evidence in practice are
reluctance by some to accept the new practice, using an assessment tool routinely would be seen
by some as troublesome and another thing that they are forced to do even though it has the
patient’s best interests in mind, and taking the time to go the extra mile and use successful
interventions that will improve quality of life in pediatric patients with cancer. A change in
practice is needed though it will not be able to effectively occur until a universal assessment tool
is developed. When trying to implement this eventual change in practice nurses will have to be
open to this new idea that will involve spending time with the patient to ensure that the
assessment is filled out correctly in order to provide appropriate interventions to improve the
patient’s quality of life. To over come this barrier of not wanting to change practice there will
have to be in-services that explain to nurses the usefulness of the tool in practice, how to use the
tool in order to most accurately measure quality of life, and then which interventions will be
appropriate for a child with a certain quality of life that will hopefully work to improve this
Evaluation of Practice
To evaluate the effectiveness of this change in practice from current practice, I would
look at the child’s assessment of his or her own quality of life most importantly to see if it is
QUALITY OF LIFE IN PEDIATRIC PATIENTS WITH CANCER 12
improved. Variables discussed above that are related to quality of life such as symptoms of the
disease, relationships with family and friends, and variations from usual activities. Other
response to treatment, and the child’s outlook on life. All of these give some insight on what the
child’s assessment of his or her own quality of life is and whether or not the change of practice
Conclusion
The quality of life of a pediatric cancer patient is an important, but developing part of
nursing practice. Current research has identified symptoms of the disease and treatment, family,
relationships with friends, and variations from usual activities as significant components that
affect a child’s quality of life. Development of a universal, reliable, and accurate assessment tool
is essential to implement a change in practice. While using this tool it will be important for
nurses to remember that for children under the age of 12 a parent can be considered a reliable
proxy however for adolescents age 13 to 18 a parent should not be considered a reliable indicator
of quality of life and therefore all information should come directly from the pediatric patient.
Then further research on interventions that improve quality of life using this universal tool
should be conducted. From this further change in practice can occur which will suggest
interventions to improve the quality of life that children who have been diagnosed with cancer
References
Chang, P. & Yeh, C. (2005). Agreement between child self-report and parent proxy-report to evaluate
quality of life in children with cancer. Psycho-Oncology, 14, 125-134. doi: 10.1002/pon.828
Hicks, J., Bartholomew, J., Ward-Smith, P., & Hutton, C. J. (2003). Quality of life among childhood
10.1177/1043454203253969
Hinds, P.S., Gattuso, J.S., Fletcher, A., Baker, E., Coleman, B., Jackson, … Pui, C. (2004).
Quality of life as conveyed by pediatric patients with cancer. Quality Of Life Research:
http://www.springerlink.com/content/k780786672k605mq/
Ward-Smith, P., McCaskie, B., & Rhoton, S. (2007). Adolescent-evaluated quality of life: A longitudinal