Running head: QUALITY OF LIFE IN PEDIATRIC PATIENTS WITH CANCER 1

Perception of Quality of Life in Pediatric Patients with Cancer

Brianne M. Denning

University of Evansville
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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

assessing the pediatric patient’s quality of life.

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Quality of Life in Pediatric Patients with Cancer: A Literature Review

Introduction and PICO Question

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

the following literature review.

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
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measurement. Knowing this information will allow nurses to know sources where quality of life

information can come from and be considered accurate and reliable.

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

ways to improve quality of life in pediatric patients with cancer.

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

following diagnosis or treatment of cancer.

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,

were research articles, and were written by at least one nurse.

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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

four did not pertain to the population of interest.

Literature Review

Population and Sample

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

about parental proxy of information (Chang & Yeh, 2005).

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

once from the participants as seen in the first pilot study.

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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

critical components of the issue.

Aspects of Quality of Life

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

being with friends.

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
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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

fun of the patients.

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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.

Adequacy of a Parental Proxy

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

information provide directly from the adolescent.

Interventions to Improve Quality of Life

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.
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Critique of Current Literature

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

change in practice can be recommended.

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

the most reliable sources of information.

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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.

Implications for Nursing 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,

and periodically during remission.

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

needed to make conclusions using these evaluations.

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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

that nurses can apply this information in their practice.

Barriers to Evidence Based Practice

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

quality of life or at the least maintain it at its current level.

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
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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

variables that may be looked at include length of hospitalization, improvement of health,

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

has been effective.

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

will have in the future.

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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

leukemia patients. Journal of Pediatric Oncology Nursing, 20(4), 192-200. doi:

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:

An International Journal Of Quality Of Life Aspects Of Treatment, Care And

Rehabilitation, 13(4), 761-772. Retrieved from

http://www.springerlink.com/content/k780786672k605mq/

Ward-Smith, P., McCaskie, B., & Rhoton, S. (2007). Adolescent-evaluated quality of life: A longitudinal

study. Journal of Pediatric Oncology Nursing, 24(6), 329-333. doi: 10.1177/1043454207308067