Pain_in_Children_With_Cancer_Prevalence_Characteri

See discussions, stats, and author profiles for this publication at: https://www.researchgate.
net/publication/318203282
Pain in Children With Cancer: Prevalence, Characteristics, and Parent

Management
Article in The Clinical journal of pain · July 2017

DOI: 10.1097/AJP.0000000000000531
CITATIONS READS
65 2,862
11 authors, including:
Perri R Tutelman Christine T. Chambers, Ph.D.

Dalhousie University Dalhousie University
44 PUBLICATIONS 1,612 CITATIONS 209 PUBLICATIONS 12,417 CITATIONS
SEE PROFILE SEE PROFILE
Jennifer Stinson Jennifer A Parker

SickKids IWK Health Centre
314 PUBLICATIONS 12,205 CITATIONS 29 PUBLICATIONS 1,103 CITATIONS
SEE PROFILE SEE PROFILE
Some of the authors of this publication are also working on these related projects:
A virtual reality intervention to facilitate distraction and relaxation in patients recovering from critical illness: A feasibility study View project
iCanCope with Pain: User-centered design of an integrated smartphone and web-based pain self-management program for youth and young adults with chronic pain View
project
All content following this page was uploaded by Melanie Barwick on 13 November 2017.
The user has requested enhancement of the downloaded file.

The Clinical Journal of Pain Publish Ahead of Print
DOI:10.1097/AJP.0000000000000531
Pain in Children with Cancer: Prevalence, Characteristics, and Parent Management
*Perri R. Tutelman, BHSc (Hons)a,b; Christine T. Chambers, PhDa,b,c; Jennifer N. Stinson,

PhDd,e,f,g; Jennifer A. Parker, PhDb; Conrad V. Fernandez, MDc,h; Holly O. Witteman, PhDi,j,k;
Paul C. Nathan, MD, MSce,l,m; Melanie Barwick, PhDe,f,n; Fiona Campbell, MDe,g; Lindsay A.
Jibb, PhDo; and Karen Irwinp
a. Department of Psychology and Neuroscience, Dalhousie University, Canada

b. Centre for Pediatric Pain Research, IWK Health Centre, Canada
c. Department of Pediatrics, Dalhousie University, Canada
d. Faculty of Nursing, University of Toronto, Canada
e. Faculty of Medicine, University of Toronto, Canada
f. Research Institute, The Hospital for Sick Children, Canada
g. Department of Anesthesia and Pain Medicine, The Hospital for Sick Children, Canada
h. Division of Pediatric Haematology/Oncology, IWK Health Centre, Canada
i. Department of Family and Emergency Medicine, Laval University, Canada
j. Office of Education and Professional Development, Laval University, Canada
k. Research Centre of the CHU de Québec-Université Laval, Canada
l. Division of Haematology/Oncology, The Hospital for Sick Children, Canada
m. Institute of Health and Policy Management and Evaluation, University of Toronto,
Canada
n. Dalla Lana School of Public Health, University of Toronto, Canada
o. Faculty of Health Sciences, School of Nursing, University of Ottawa, Canada
p. Cancer Knowledge Network, Canada
Copyright © 2017 Wolters Kluwer Health, Inc. Unauthorized reproduction of the article is prohibited.
*Corresponding author address: Centre for Pediatric Pain Research, IWK Health Centre,
5850/5980 University Avenue, PO BOX 9700, Halifax, Nova Scotia, Canada, B3K 6R8. Email:
ptutelman@dal.ca. Phone: 902-470-6906. Fax: 902-470-8736.
Funding: The present research was supported by a grant from the Canadian Cancer Society
Research Institute (#703699). P.R. Tutelman was supported by a Vanier Canada Graduate
Scholarship. She is a trainee member of Pain in Child Health, a Strategic Training Initiative in
Health Research of the Canadian Institutes of Health Research and the Beatrice Hunter Cancer
Research Institute Cancer Research Training Program. H.O. Witteman is supported by a
Research Scholar Junior 1 career award from the Fonds de recherche du Québec—Santé. C.T.
Chambers is the Canada Research Chair (Tier 1) in Children‘s Pain.
Conflicts of interest: The authors have no conflicts of interest to disclose.
Abstract
Objectives: Pain is a common and distressing symptom of pediatric cancer, as reported by both
children and their parents. Increasingly, children with cancer are cared for as outpatients, yet
little is known about how parents manage their cancer-related pain. The aim of the current study
was to examine pain prevalence and characteristics, and the pharmacological, physical and
psychological pain management strategies used by parents to manage their child‘s cancer pain.
Methods: In total, 230 parents and caregivers (89% mothers) of children (mean age = 8.93 years,
SD = 4.50) with cancer currently in treatment or who are survivors completed an online survey
about their child‘s pain in the preceding month. Results: Results indicated that children with
cancer who were on active treatment and who were post-treatment experienced clinically
significant levels of pain. Parents reported using more physical and psychological strategies than
pharmacological strategies to manage their child‘s pain. The most frequently used
physical/psychological strategy was distraction and acetaminophen was the most frequently
administered pain medication. Parents‘ confidence in managing their child‘s pain was inversely
associated with both how much pain they perceived their child had, and also whether they had
given any pain medication. Discussion: The results of this study suggest that despite parents‘ use
of pain management strategies, management of cancer-related pain continues to be a problem for
children during treatment and into survivorship.
Keywords: pediatric cancer pain; parents; pharmacological pain management; physical pain
management; psychological pain management
Introduction
Over the past several decades, advances in treatment protocols have allowed for considerable
improvements in prognosis for children and adolescents with cancer.1 This rise in survival,
coupled with the development of increasingly aggressive therapies, has drawn attention to the
importance of supportive care and symptom management for pediatric cancer patients. Pain is a
common and distressing symptoms associated with cancer according to both children and their
parents.2–8 Children with cancer frequently report pain across the disease trajectory starting from
diagnosis, to end of life, or into survivorship.9–11 Cancer-related pain can result from a variety of
processes including medical treatments (e.g., chemotherapy and radiation therapy), procedures
(e.g., blood draws, port access, lumbar punctures) and the disease itself. 4,10,12–15 While most
cancer-related pain can be effectively managed with a variety of pharmacological, physical and
psychological strategies16–18, clinical audits reveal that upwards of 50% of pediatric cancer
outpatients report undertreated pain.14,19–21 Studies have documented numerous adverse
outcomes of unmanaged pain in children with cancer which include: declines in quality of
life22,23, difficulty with sleep24, increased pain sensitivity25 and procedural distress26, restriction
of social activities27, and the development of emotional and behavioral problems.28 The
significant impact of unmanaged pain underscores the importance of ensuring that it is
effectively controlled both during and after treatment.
Oncology practice has experienced a significant shift from in- to outpatient treatment
models, which has increased the number of children with cancer who are cared for primarily by
their parents.29,30 Despite the rise in home care for pediatric cancer patients, little empirical data
exists on how parents manage their child‘s cancer-related pain.31,32 Only a handful of studies
have previously examined parents‘ management of pediatric cancer pain. Both Bossert and
colleagues33 and Lu and colleagues34 explored the cancer pain experiences of children and
parents outside of the hospital setting through qualitative interviews. In both studies, participants
described the many sources and locations of cancer-related pain and reported using
pharmacological, physical and psychological pain management strategies. Quantitatively,
Gedaly-Duff and colleagues35 piloted a cancer-pain reporting protocol at home with nine
children, and Fortier and colleagues19 collected pain management information via daily diaries
from 45 parents of children with cancer. In addition to pain ratings and characteristics, Fortier
and colleagues19 obtained data on parent- and child-level factors and explored their association
with parental administration of pain medication. Their results suggested that parent factors (e.g.,
parents‘ attitudes about medications) as well as child factors (e.g., self-reported pain) were
associated with whether parents administered analgesics. However, this study was limited by a
small sample size, and the fact that parental use of physical and psychological pain management
strategies was not examined.
The literature therefore reveals a need for further research that examines children‘s
experiences of cancer-related pain and what parents do to manage it (pharmacologically,
physically and psychologically). The objectives of the current study were to: (1) describe the
pain characteristics and the pharmacological, physical and psychological strategies used by
parents and caregivers to manage their child‘s cancer pain; and (2) explore the relationship
between child characteristics (e.g., pain intensity, treatment status), parent factors (e.g.,
medication attitudes, pain catastrophizing and confidence) and parents‘ administration of
pharmacological, physical, and psychological pain management strategies.
Materials and Methods
Participants
Participants were recruited to complete an online survey developed in partnership with
the Cancer Knowledge Network, North America‘s most widely read online cancer resource.
Over a 4-week period in 2016, the research team, community partners, stakeholders, and other
childhood cancer organizations (see acknowledgements for full list) recruited participants by
sharing the link to the online survey with their networks of parents of children with cancer. The
online platforms used to share the survey link included Twitter, Facebook, professional and
patient-directed listservs and blogs. To be eligible to participate in the study, individuals had to
be a parent or caregiver (hereafter referred to as ‗parent‘) of a child (aged 0 to 18 years) with
cancer currently in treatment or is a survivor. Participants had to be able to read and understand
English to participate. There were no geographic restrictions. A total of 311 parents started the
survey, of whom 256 completed the survey (82% completion rate). Of these, 230 provided data
used for analysis. The other 26 participants were excluded due to child age over 18 years (n=22),
indication that child had passed away (n=3), or a second parent providing data on the same child
(n=1).
Measures
Parents completed an online questionnaire comprised of the measures listed below. Best
practices in patient engagement and patient-oriented research were integrated into this study.36
Among other practices, before the questionnaire was made available to the public, it was piloted
by a panel of 12 parent/patient representatives (listed in the acknowledgements) to assess its
relevance, clarity, and duration to complete. Feedback from the panel was incorporated into the
final online questionnaire. A copy of the complete questionnaire is available upon request.
Child Cancer History. Parents completed questions about their child‘s cancer history
including cancer diagnosis, time since diagnosis, and remission and relapse status. In addition,
they reported on their child‘s cancer treatment history, including previous, current or planned
chemotherapy, radiation, surgery, bone marrow/stem cell transplant or other treatment. Children
whose parents reported that they were currently undergoing one or more treatments or had one or
more treatments pending were considered to be on active treatment.
Child Pain Characteristics. Parents reported on their child‘s worst, least and average pain
over the last month on a scale ranging from 0 (―no pain‖) to 10 (―worst possible pain‖) and
identified the location(s) of pain from the following options: head (e.g., head, eyes, ears, mouth,
throat, neck), torso (e.g., shoulders, chest, stomach, sides, back, groin), arms (e.g., arms, elbows,
wrists, hands, fingers) and legs (upper leg/thigh, knee, lower leg/calf, ankle, feet, toes). Finally,
parents indicated whether they believed the pain was due to their child‘s: treatments (e.g.,
chemotherapy, radiation, medication, surgery), cancer (e.g., the disease itself), medical
procedures (e.g., lumbar puncture, bone marrow aspiration, IV insertion, blood work), medical
conditions other than their cancer (e.g., arthritis, sickle cell disease) or everyday pain (e.g., minor
bumps and scrapes). Parents could select multiple pain locations and sources. These items were
adapted from a validated pain assessment application for children and adolescents with cancer.37
Pain Management Practices. Parents indicated how often they used various
pharmacological, physical and psychological pain management strategies over the past month.
Frequencies of use were rated on a 5-point Likert scale ranging from 1 (―never‖) to 5 (―always‖).
The selectable strategies were adapted from those included in the pain assessment tool created
and validated by Stinson et al. (2015).
Parent Confidence. Parents were asked to rate the following question on a scale from 0
(―not at all confident‖) to 10 (―very confident‖), ―Overall when your child is in pain, how
confident are you in your ability to make them feel better?‖
Pain Catastrophizing – Parent. Parent pain catastrophizing was assessed using the
parent-report version of the Pain Catastrophizing Scale (PCS-P). The PCS-P is comprised of 13
items across 3 subscales (rumination, magnification and helplessness), which evaluate
catastrophic thoughts and feelings about child pain. Parents rated the extent to which they
experience each of the items using a 5-point scale, with a higher score indicating more
catastrophic thinking. The PCS-P has been shown to be valid and reliable.38 Cronbach‘s alpha in
our sample was 0.92.
Knowledge of Pain Assessment - Parental knowledge of pain assessment was measured
using the Parental Pain Expression Perceptions (PPEP) questionnaire. The PPEP is a 9 item-scale
that evaluates parental perceptions of child pain across three subscales of pain expression: active,
loud behaviors, attention-seeking behaviors and quiet, inactive behaviors. Items are rated on a 7-
point scale with a higher overall score indicating greater misconceptions of the ways children
express pain. The PPEP has demonstrated good validity.39 Cronbach‘s alpha in our sample was
0.79.
Medication Attitudes - Parental attitudes towards using medications to treat child pain
was assessed using the 16-item Medication Attitudes Questionnaire (MAQ). The MAQ is
comprised of 3 subscales: avoidance, appropriate-use, and fear of side-effects. Items are rated on
a scale of 1-7 and summed (with the appropriate items reverse scored). A higher overall score
indicates more incorrect knowledge and greater attitudinal barriers toward providing children
with analgesia. The measure has shown to have good validity.39,40 Cronbach‘s alpha in our
sample was 0.82.
Demographics. Parents answered demographic questions for themselves and their child.
These included their child‘s date of birth, sex and ethnicity, and their own age, relationship to
their child, highest level of education achieved, marital status and ethnicity.
Procedure
Parents interested in participating followed a link to the online questionnaire where they
received information about the study. Before beginning, they were informed that completion of
the questionnaire would serve as their consent to participate. Every item in the questionnaire
required a response, however, participants had the option to select ―prefer not to answer‖ for any
item they wished not to complete. At the end of the questionnaire, parents could opt-in to a draw
to win one of three $250 (CAD equivalent) gift cards to an online retailer. The study was
approved by the Research Ethics Board at the IWK Health Centre in Halifax, Nova Scotia.
Data Analysis
Descriptive statistics were used to characterize the sample demographics, prevalence,
locations and sources of pain, and the pain management strategies used. Welch‘s independent t
tests and Pearson‘s correlations compared parent and child characteristics and pain intensity.
Differences in patient and parent characteristics and use of pain management strategies were
assessed using 2 tests and Welch‘s independent t tests.
Results
Participants
A summary of the participant characteristics can be found in Table 1. Data came from
230 parents (89% mothers) from 10 different countries. Children ranged in age from 1 to 18
years (mean = 8.93, SD = 4.50) and there was an equal ratio of boys to girls. Most parents
identified themselves (84.9%) and their children (79.0%) as Caucasian/White.
Child Disease Characteristics and Treatments
The disease characteristics of the children in the sample are presented in Table 1. The
most commonly reported cancer diagnosis was acute lymphoblastic leukemia (36.1%), followed
by neuroblastoma (18.7%) and brain tumor (14.8%). The majority of children were within 1 to 5
years of their diagnosis (55.6%) and had completed treatment (66.0%). Children‘s previous,
current, and upcoming parent-reported cancer-related treatments are outlined in Table 2.
Pain Intensity
Data on parent-reported child pain intensity are outlined in Table 3. Three quarters of
parents (n=172) reported that their child had experienced pain (a rating >0/10) in the past month.
Worst, average, and least pain ratings fell within the clinically significant range (defined as a
rating greater than 3/1041) for 59%, 41% and 3.9% of these children, respectively. Children on
active treatment (n=79) had significantly higher worst (t=7.53, p<.001), average (t=6.19, p<.001)
and least (t=2.45, p<.05) pain ratings than those who were post-treatment. Parents‘ confidence in
managing their child‘s pain was negatively correlated with their ratings of their child‘s worst (r=-
0.214, p<.01) and average (r=-0.212, p<.01), but not least (r=-0.101, p=.131) pain in the past
month. Parent-reported child pain was not associated with child age or sex.
Sources and Locations of Pain
Pain associated with cancer treatments (e.g., chemotherapy, radiation, medication and/or
surgery) was the most frequently reported source of pain for children on active treatment
(79.7%) and the most common cancer-related source of pain for children post-treatment (28.5%).
The next most common source of pain for both groups was medical procedures (e.g., lumbar
puncture, bone marrow aspiration, IV insertion, blood work) (Table 2). Everyday pains (e.g.,
minor bumps and scrapes) were the most common overall source of pain for children who had
completed treatment (31.8%). Data on the bodily locations of pain are outlined in Table 3. The
most frequently reported location of pain was legs (45.1%), followed by torso (37.6%), head
(32.7%) arms (8.4%).
Use of Pharmacologic, Physical and Psychological Pain Management Strategies
The strategies parents reported using to manage their child‘s pain in the past month, and
the factors associated with their use, are summarized in Tables 4 and 5. Almost all parents
(88.7%) endorsed the use of at least one pharmacological, physical or psychological strategy to
manage their child‘s pain. Of the parents who reported using a pain management strategy, more
reported using at least one physical or psychological strategy (87.8%) compared to a
pharmacological strategy (65.7%). On average, parents reported using approximately 2
pharmacological, compared to 6 physical and psychological strategies, and tended to use
physical and psychological strategies more frequently. The most frequently used
physical/psychological strategy used was distraction, followed by rest/sleep, and talking.
Acetaminophen was the most frequently administered medication. Use of pharmacological,
physical, and psychological strategies varied based on several factors. Parents who reported
using pharmacological, physical and psychological strategies rated their child‘s pain (worst,
least, and average) significantly higher compared to those who did not. Similarly, parents of
children on active treatment were more likely to use pharmacological (2=10.60, p<.01) and
physical and psychological pain management strategies (2=5.69, p<.05) compared to those
whose children were post-treatment. Parents who used pharmacological strategies were less
confident in managing their child‘s pain, compared to those who did not use pharmacological
strategies (t=-4.23, p<.001). Parents did not differ in their confidence for managing pain
regardless of whether they used physical or psychological strategies (t=-0.77, p=.45).
Pharmacological, physical and psychological strategy use did not differ based on child age or
sex, the extent to which parents catastrophize about their child‘s pain, parents‘ attitudes about
pain medication or their knowledge of pain assessment.
Discussion
The results of the current study suggest that children with cancer experience a substantial
pain burden both during and after treatment. Within the month preceding the survey, more than
50% of parents reported that their child‘s worst pain and 40% of parents reported that their
child‘s average pain was clinically significant (a score greater than 3/10)41. The hallmarks of
clinically significant pain are typically defined by one‘s need for pain management and the
interference of pain in everyday life and functioning.42 While parents did not report on their
child‘s functioning or individual pain tolerance in the current study, previous work demonstrated
that pediatric inpatients with pain scores higher than 3 used more medication, complained of
pain, and had difficulty moving and walking, eating, and playing.41 Parents of children on active
treatment reported significantly higher levels of pain than those who had completed treatment,
which may be attributed to the frequency and intensity of therapies and procedures (and their
complications) endured while on active treatment. Yet, despite this, the worst levels of pain
reported by parents of children post-treatment were also within the clinically significant range.
The increasing survival rates for children with cancer and the potential for significant long-term
pain highlights the necessity of cancer pain assessment and management not only when children
are undergoing active treatment, but also once they enter survivorship. Unfortunately, audits of
childhood cancer survivorship clinics suggest that a large proportion of survivors are lost to
follow-up.43 Efforts to engage this population in follow-up care may be important in ensuring
that the growing number of childhood cancer survivors receive proper pain management.
Sources of cancer pain can be diverse. According to parents, the most common cancer-
related cause of their child‘s pain in the past month was treatments (e.g., chemotherapy,
radiation, medication, surgery). This was true for children on active treatment and post-
treatment. Cancer treatments are known to be a source of pain for children with cancer in both
the short and long term,44,45 yet, the majority of intervention research to date has focused on the
prevention and management of procedural-related pain occurring while the child is in hospital.17
Even though patients and their parents have continually reported that cancer-related treatments
are the most common source of pain during treatment13,46 and survivorship9, little progress has
been made in terms of evidence for treatment-related pain management since the 1980s.47,48 The
efficacy of pharmacological, physical, and psychological strategies for treatment-related pain
should be a priority area for future research.
Multimodal approaches to cancer pain management, including a combination of
pharmacological, physical and psychological strategies are considered best practice.16 In our
sample, parents reported using pharmacological, physical and psychological strategies to manage
their child‘s cancer pain within the past month. Pharmacologically, parents most frequently
reported using over-the-counter medications (e.g., acetaminophen) to manage their child‘s pain.
This is likely due to the high proportion of parents of children post-treatment in our sample, who
on average, had lower levels of pain. Based on the nature of our data, we were unable to examine
the extent to which parents followed the well-validated World Health Organization principles of
pain management49 (e.g., treating mild pain with acetaminophen/ibuprofen, and moderate to
severe pain with opioids). Future research should evaluate parents‘ decision making processes in
the context of selecting and administering pain medication to their children. Parents reported
using physical and psychological pain management strategies more frequently than pain
medication. Interestingly, imagery was the physical/psychological strategy endorsed the least
frequently by parents despite having the most robust empirical support for cancer pain
management. A previous review17 of psychological and physical interventions for pediatric
cancer pain found that guided imagery was effective in reducing procedure-related pain. Reasons
for parents‘ limited uptake of this strategy (e.g., low perceived effectiveness, limited
exposure/instruction) are unclear but warrant further investigation if we are to encourage the
most effective methods for managing pain. We were unable to examine parents‘ use of
psychological versus physical pain strategies as they were assessed together in the measure used
in this study.37 Previous work has attempted to divide non-pharmacological strategies into
distinct categories, however, their classification remains uncertain.50
Various parent- and child-level factors were found to be associated with whether parents
administered pharmacological, physical and psychological pain management strategies. Worst,
average and least pain ratings and child treatment status were significantly associated with
pharmacological, physical and psychological strategy use. It is uncertain if parents of children
post-treatment were less likely to intervene with pain management strategies because they
perceived that their children were in less pain, or simply because their child was no longer on
active treatment. Regardless, on average, parents of children post-treatment reported that their
worst pain intensity was above the clinically significant threshold. It is important for parents to
be made aware that their child‘s cancer-related pain may not end once treatment is complete, and
that pain in the post-treatment period can be effectively managed should it be bothersome or
cause their child discomfort. In our study, parent misconceptions about the use of pain
medications and about children‘s expression of pain were not associated with whether parents
used pain management strategies. This is in contrast to prior work in the area of parent post-
operative pain management, which has found that parent misconceptions predict administration
of analgesia.51 Research with pediatric oncology populations has been mixed. Qualitatively,
parents of children with cancer have expressed no concerns about addiction resulting from the
use of opioids.13,34 However, recent quantitative studies have found that parents of children with
cancer do hold misconceptions about pain assessment and management52, which impacts their
administration of analgesia.19 While misconceptions did not appear to be associated with parent
pain management in our sample, it is possible that factors such as parent ethnicity and language
proficiency53 and extent of education and teaching provided by clinicians54 may account for
differences in effects across studies.
Parents‘ confidence in their ability to manage their child‘s pain emerged as a significant
variable associated with both how much pain they perceived their child to have in the past month
and whether they administered pain medications to their child. These relationships between
caregiver confidence, child pain, and use of pain management strategies have been noted
previously in work with care providers including nurses and parents. Studies have found that
when nurses55 and parents56 perceive that a child‘s pain is well-controlled, they feel more
confident in their ability to manage pain. Similarly, there is evidence to suggest that actively
performing tasks associated with their child‘s care help parents to feel more confident about their
ability to provide effective pain relief.57,58 Perhaps the negative relationship we found between
parent confidence and medication administration reflects parents‘ attempts to have an active role
in their child‘s care, which in turn, may help to increase their feelings of control and self-
efficacy. Interestingly, in our sample, parents‘ level of confidence in managing their child‘s pain
was only associated with use of pharmacological strategies, not physical or psychological pain
management strategies. This may reflect how parents appraise the medical utility of physical and
psychological versus pharmacological strategies, a question that can be further explored. Overall,
empowering parents with the knowledge and tools they need to improve their child‘s pain may
be an important target to improve their confidence, and ultimately, their child‘s health and well-
being.
This work is not without limitations. First, given the design of the study, we were only
able to collect data about children‘s cancer pain experiences from their parents, including
parents‘ reports of child pain. Past research has shown that parents and children do not always
agree in their reports of pain, and that in fact, parents tend to rate their child‘s level of pain lower
than their children do.59 This bias may have led to an underestimation of the pain ratings in our
sample. Similarly, in attempt to capture a snapshot of parents‘ recent pain management practices,
we asked parents to report on their child‘s pain and how they managed the pain over the past
month. Pain is a contextual phenomenon that strongly influenced by situational and social
factors60, and thus, retrospective recall of pain may lead to inaccuracies.61 Also, while this
study‘s use of an internet-based survey allowed us to collect data from a large number of parents
of children with cancer, we cannot rule out the possibility that parents of children with certain
characteristics (e.g., overall higher or lower pain) may have disproportionately participated.
Further, while the distribution of cancer diagnoses in our sample was generally representative,
there were some diagnoses that were over- and under-represented (e.g., acute myeloid leukemia
and brain tumours, respectively). The heterogeneity of cancer pathophysiology62 and treatment63
based on diagnosis may have influenced the pain ratings in our sample. Finally, our study only
examined the pain experiences of children with cancer currently undergoing treatment or who
were survivors. Indeed, children with cancer often experience severe pain at end of life, and thus,
exploring parents‘ experiences providing care during this period should be a focus in future
work.
This study of parent-reported pain prevalence, characteristics, and management practices
in a large and diverse sample of children with cancer showed that children continue to
experience significant pain despite parents‘ use of varied pain management strategies. Future
research of parent- and child-level factors associated with pain and parental use of pain
management strategies in children with cancer has the potential to elucidate factors that hinder
optimal pain management. This, in turn, could potentially inform the development of patient- and
family-centered interventions that effectively attenuate pain in this population.
Acknowledgements
We wish to acknowledge the Cancer Knowledge Network (Lorne Cooper, publisher) for their
partnership in this work, the members of our parent advisory panel (Becky Carey, Brenda
Murchison, Jenn Lyster, Jenny Doull, Jonathan Agin, Maya Stern, Patrick Sullivan, Sameen
Rehman, Sue McKechnie, Nicole Poplar and Tammie Clearly) for providing input on the online
survey, and our partner organizations (C17 Council, Children‘s Oncology Group Patient Advisory
Committee (COG PAC), The Max Cure Foundation & Cancer Therapy Development Institute,
Meagan‘s Walk, Neuroblastoma Canada, Ontario Parents Advocating for Children with Cancer
(OPACC), Pain BC, Pediatric Oncology Group of Ontario (POGO) and The Team Finn
Foundation) for sharing and promoting the study. We would also like to thank Kari Tiffin and
Kristen Allison for their assistance with digital content design, and Emily Drake for her digital
strategy support. Finally, we would like to acknowledge the parents who shared their experiences
by participating in this research.
References
1. Smith MA, Seibel NL, Altekruse SF, et al. Outcomes for Children and Adolescents With
Cancer: Challenges for the Twenty-First Century. J Clin Oncol 2010;28(15):2625-2634.
2. Collins JJ, Byrnes ME, Dunkel IJ, et al. The measurement of symptoms in children with
cancer. J Pain Symptom Manage 2000;19(5):363-377.
3. Goldman A, Hewitt M, Collins GS, Childs M, Hain R, United Kingdom Children‘s Cancer
Study Group/Paediatric Oncology Nurses‘ Forum Palliative Care Working Group.
Symptoms in children/young people with progressive malignant disease: United Kingdom
Children‘s Cancer Study Group/Paediatric Oncology Nurses Forum survey. Pediatrics
2006;117(6):e1179-1186.
4. Hedström M, Haglund K, Skolin I, von Essen L. Distressing events for children and
adolescents with cancer: child, parent, and nurse perceptions. J Pediatr Oncol Nurs Off J
Assoc Pediatr Oncol Nurses 2003;20(3):120-132.
5. Ljungman G, Kreuger A, Gordh T, Sörensen S. Pain in pediatric oncology: do the
experiences of children and parents differ from those of nurses and physicians? Ups J Med
Sci 2006;111(1):87-95.
6. Miller E, Jacob E, Hockenberry MJ. Nausea, pain, fatigue, and multiple symptoms in
hospitalized children with cancer. Oncol Nurs Forum 2011;38(5):E382-393.
7. Pöder U, Ljungman G, von Essen L. Parents‘ perceptions of their children‘s cancer-related
symptoms during treatment: a prospective, longitudinal study. J Pain Symptom Manage
2010;40(5):661-670.
8. Zhukovsky DS, Rozmus CL, Robert RS, et al. Symptom profiles in children with advanced
cancer: Patient, family caregiver, and oncologist ratings. Cancer 2015;121(22):4080-4087.
9. Lu Q, Krull KR, Leisenring W, et al. Pain in long-term adult survivors of childhood cancers
and their siblings: a report from the Childhood Cancer Survivor Study. Pain
2011;152(11):2616-2624.
10. Van Cleve L, Bossert E, Beecroft P, Adlard K, Alvarez O, Savedra MC. The pain
experience of children with leukemia during the first year after diagnosis. Nurs Res
2004;53(1):1-10.
11. Wolfe J, Grier HE, Klar N, et al. Symptoms and Suffering at the End of Life in Children
with Cancer. N Engl J Med 2000;342(5):326-333.
12. Harper FWK, Peterson AM, Uphold H, et al. Longitudinal study of parent caregiving self-
efficacy and parent stress reactions with pediatric cancer treatment procedures.
Psychooncology 2013;22(7):1658-1664.
13. Ljungman G, Gordh T, Sörensen S, Kreuger A. Pain in paediatric oncology: interviews with
children, adolescents and their parents. Acta Pædiatrica 1999;88(6):623-630.
14. Ljungman G, Gordh T, Sörensen S, Kreuger A. Pain variations during cancer treatment in
children: a descriptive survey. Pediatr Hematol Oncol 2000;17(3):211-221.
15. McGrath PJ, Hsu E, CappelliMA M, Luke B, Goodman JT, Dunn-Geier J. Pain from
Pediatric Cancer. J Psychosoc Oncol 1990;8(2-3):109-124.
16. Friedrichsdorf SJ, Postier A. Management of breakthrough pain in children with cancer. J
Pain Res 2014;7:117-123.
17. Jibb LA, Nathan PC, Stevens BJ, et al. Psychological and Physical Interventions for the
Management of Cancer-Related Pain in Pediatric and Young Adult Patients: An Integrative
Review. Oncol Nurs Forum 2015;42(6):E339-357.
18. Pujol LAM, Monti DA. Managing cancer pain with nonpharmacologic and complementary
therapies. J Am Osteopath Assoc 2007;107(12 Suppl 7):ES15-21.
19. Fortier MA, Wahi A, Bruce C, Maurer EL, Stevenson R. Pain management at home in
children with cancer: a daily diary study. Pediatr Blood Cancer 2014;61(6):1029-1033.
20. Jacob E, Hesselgrave J, Sambuco G, Hockenberry M. Variations in pain, sleep, and activity
during hospitalization in children with cancer. J Pediatr Oncol Nurs Off J Assoc Pediatr
Oncol Nurses 2007;24(4):208-219.
21. Van Cleve L, Muñoz CE, Savedra M, et al. Symptoms in children with advanced cancer:
child and nurse reports. Cancer Nurs 2012;35(2):115-125.
22. Calissendorff-Selder M, Ljungman G. Quality of life varies with pain during treatment in
adolescents with cancer. Ups J Med Sci 2006;111(1):109-116.
23. Eiser C, Eiser JR, Stride CB. Quality of life in children newly diagnosed with cancer and
their mothers. Health Qual Life Outcomes 2005;3:29.
24. Walter LM, Nixon GM, Davey MJ, Downie PA, Horne RSC. Sleep and fatigue in pediatric
oncology: A review of the literature. Sleep Med Rev 2015;24:71-82.
25. Weisman SJ, Bernstein B, Schechter NL. Consequences of inadequate analgesia during
painful procedures in children. Arch Pediatr Adolesc Med 1998;152(2):147-149.
26. Katz ER, Kellerman J, Siegel SE. Behavioral distress in children with cancer undergoing
medical procedures: Developmental considerations. J Consult Clin Psychol
1980;48(3):356-365.
27. Ameringer S. Barriers to pain management among adolescents with cancer. Pain Manag
Nurs Off J Am Soc Pain Manag Nurses 2010;11(4):224-233.
28. Steif BL, Heiligenstein EL. Psychiatric symptoms of pediatric cancer pain. J Pain Symptom
Manage 1989;4(4):191-196.
29. Flury M, Caflisch U, Ullmann-Bremi A, Spichiger E. Experiences of Parents With Caring
for Their Child After a Cancer Diagnosis. J Pediatr Oncol Nurs 2011;28(3):143-153.
30. Hendershot E, Murphy C, Doyle S, Van-Clieaf J, Lowry J, Honeyford L. Outpatient
chemotherapy administration: decreasing wait times for patients and families. J Pediatr
Oncol Nurs Off J Assoc Pediatr Oncol Nurses 2005;22(1):31-37.
31. Fortier MA, Sender LS, Kain ZN. Management of Pediatric Oncology Pain in the Home
Setting: The Next Frontier. J Pediatr Hematol Oncol 2011;33(4):249-250.
32. Twycross A, Parker R, Williams A, Gibson F. Cancer-Related Pain and Pain Management:
Sources, Prevalence, and the Experiences of Children and Parents. J Pediatr Oncol Nurs
2015;32(6):369-384.
33. Bossert EA, Van Cleve L, Savedra MC. Children with cancer: the pain experience away
from the health care setting. J Pediatr Oncol Nurs Off J Assoc Pediatr Oncol Nurses
1996;13(3):109-120.
34. Lu C-H, Huang C-Y, Park J-H, Lin H-R, Lee Y-L, Cheng S-F. Main Caregivers‘
Experiences of Managing Pain for Children With Neuroblastoma in Taiwan. J Pediatr
Oncol Nurs 2011;28(6):326-335.
35. Gedaly-Duff V, Lee KA, Nail L, Nicholson HS, Johnson KP. Pain, sleep disturbance, and
fatigue in children with leukemia and their parents: a pilot study. Oncol Nurs Forum
2006;33(3):641-646.
36. PCORI (Patient-Centered Outcomes Research Institute). PCORI Patient and Family
Engagement Rubric. June 2016. Available at: http://www.pcori.org/assets/2014/02/PCORI-
Patient-and-Family-Engagement-Rubric.pdf. Accessed January 26, 2017.
37. Stinson JN, Jibb LA, Nguyen C, et al. Construct validity and reliability of a real-time
multidimensional smartphone app to assess pain in children and adolescents with cancer.
Pain 2015;156(12):2607-2615.
38. Goubert L, Eccleston C, Vervoort T, Jordan A, Crombez G. Parental catastrophizing about
their child‘s pain. The parent version of the Pain Catastrophizing Scale (PCS-P): a
preliminary validation. Pain 2006;123(3):254-263.
39. Zisk RY, Grey M, MacLaren JE, Kain ZN. Exploring sociodemographic and personality
characteristic predictors of parental pain perceptions. Anesth Analg 2007;104(4):790-798.
40. Forward PS, Brown TL, McGrath PJ. Mothersʼ attitudes and behavior toward medicating
childrenʼs pain: Pain 1996;67(2):469-474.
41. Ellis JA, Blouin R, Lockett J. Patient-Controlled Analgesia Optimizing the Experience. Clin
Nurs Res 1999;8(3):283-294.
42. Birnie KA, McGrath PJ, Chambers CT. When does pain matter? Acknowledging the
subjectivity of clinical significance. Pain 2012;153(12):2311-2314.
43. Edgar AB, Borthwick S, Duffin K, Marciniak-Stepak P, Wallace WHB. Survivors of
childhood cancer lost to follow-up can be re-engaged into active long-term follow-up by a
postal health questionnaire intervention. Eur J Cancer 2012;48(7):1066-1073.
44. Burgoyne LL, Billups CA, Jirón JL, et al. Phantom limb pain in young cancer-related
amputees: Recent experience at St. Jude Children‘s Research Hospital. Clin J Pain
2012;28(3):222-225.
45. Gilchrist L. Chemotherapy-induced peripheral neuropathy in pediatric cancer patients.
Semin Pediatr Neurol 2012;19(1):9-17.
46. Elliott SC, Miser AW, Dose AM, et al. Epidemiologic features of pain in pediatric cancer
patients: a co-operative community-based study. North Central Cancer Treatment Group
and Mayo Clinic). Clin J Pain. 1991;7(4):263-268.
47. Friedrichsdorf SJ, Nugent AP. Management of neuropathic pain in children with cancer.
Curr Opin Support Palliat Care 2013;7(2):131-138.
48. Jay SM, Elliott C, Varni JW. Acute and chronic pain in adults and children with cancer. J
Consult Clin Psychol 1986;54(5):601-607.
49. World Health Organization. Cancer Pain Relief and Palliative Care in Children. Geneva:
WHO; 1998. http://apps.who.int/iris/bitstream/10665/42001/1/9241545127.pdf.
50. Vessey JA, Carlson KL. Nonpharmacological interventions to use with children in pain.
Issues Compr Pediatr Nurs 1996;19(3):169-182.
51. Rony RYZ, Fortier MA, Chorney JM, Perret D, Kain ZN. Parental Postoperative Pain
Management: Attitudes, Assessment, and Management. Pediatrics 2010;125(6):E1372-
E1378.
52. Fortier MA, Wahi A, Maurer EL, Tan ET, Sender LS, Kain ZN. Attitudes regarding
analgesic use and pain expression in parents of children with cancer. J Pediatr Hematol
Oncol 2012;34(4):257-262.
53. Batista ML, Fortier MA, Maurer EL, Tan E, Huszti HC, Kain ZN. Exploring the Impact of
Cultural Background on Parental Perceptions of Children‘s Pain. Child Health Care
2012;41(2):97-110.
54. Chorney JM, Twycross A, Mifflin K, Archibald K. Can we improve parents‘ management
of their children‘s postoperative pain at home? Pain Res Manag J Can Pain Soc
2014;19(4):e115-e123.
55. Simons J. A Proposed Model of the Effective Management of Children‘s Pain. Pain Manag
Nurs 2015;16(4):570-578.
56. Byrne MW, Evan E, Goshin LS, et al. Parent self-efficacy for managing pain in seriously ill
children and adolescents nearing end of life. Palliat Support Care 2011;9(2):137-147.
57. Corlett J, Twycross A. Negotiation of parental roles within family-centred care: a review of
the research. J Clin Nurs 2006;15(10):1308-1316.
58. Greenberg RS, Billett C, Zahurak M, Yaster M. Videotape Increases Parental Knowledge
About Pediatric Pain Management: Anesth Analg 1999;89(4):899.
59. Chambers CT, Reid GJ, Craig KD, McGrath PJ, Finley GA. Agreement between child and
parent reports of pain. Clin J Pain 1998;14(4):336-342.
60. Carlino E, Frisaldi E, Benedetti F. Pain and the context. Nat Rev Rheumatol
2014;10(6):348-355.
61. Stinson JN, Jibb LA, Lalloo C, et al. Comparison of Average Weekly Pain Using Recalled
Paper and Momentary Assessment Electronic Diary Reports in Children With Arthritis:
Clin J Pain 2014;30(12):1044-1050.
62. Cooper G. The Cell: A Molecular Approach. 2nd edition. Washington, D.C.; Sunderland,
Mass.: Sinauer Associates Inc; 2000.
63. Hewitt M, Weiner SL, Simone JV, eds. Childhood Cancer Survivorship: Improving Care
and Quality of Life. Washington, D.C: National Academies Press; 2003.
Table 1. Parent and Child Characteristics (N=230).
Characteristic n (%) Mean (SD)
Child Characteristics
Child Age (years) 8.93 (4.50)
Child Sex (boy) 116 (50.4)
Diagnosis
Acute lymphoblastic leukemia 83 (36.1)
Acute myeloid leukemia 8 (3.5)
Brain tumor 34 (14.8)
Lymphoma 12 (5.2)
Neuroblastoma 43 (18.7)
Sarcoma 24 (10.4)
Renal tumor 16 (7.0)
Other 10 (4.3)
Time Since Diagnosis
< 6 months 22 (9.6)
6 months – 1 year 31 (13.5)
1 – 2 years 52 (22.6)
2 – 5 years 76 (33.0)
5 – 10 years 39 (17.0)
10 + years ago 10 (4.3)
Treatment Status
Active Treatment 79 (34.3)
Post-Treatment 151(66.0)
Remission Status
In remission 162 (70.4)
Not in remission 59 (25.7)
Prefer not to answer 9 (3.9)
Relapse Status
Experienced relapse 36 (15.7)
Did not experience relapse 190 (82.6)
Country of Residence
Canada 116 (50.4)
United States 65 (28.3)
Netherlands 24 (10.4)
United Kingdom 10 (4.3)
Australia 10 (4.3)
Other 5 (2.2)
Child Ethnicity*
Caucasian/White 173 (79.0)
Mixed Race 15 (6.8)
Asian 6 (2.7)
Aboriginal 4 (1.8)
Other 10 (4.6)
Parent Characteristics
Parent Age*
20-29 years 16 (7.0)
30-39 years 85 (37.0)
40-49 years 106 (46.1)
50-59 years 11 (4.8)
60+ years 1 (0.4)
Relationship to Child *
Mother 195 (89.0)
Father 19 (8.7)
Other (e.g., grandparent, aunt) 4 (1.8)
Marital Status*
Married 164 (74.9)
Divorced / Separated 21 (9.6)
Living with a partner 18 (8.2)
Single 8 (3.7)
In a relationship 6 (2.7)
*n=219.
Table 2. Child Cancer Treatment Summary (N=230).

Chemotherapy Radiation Surgery BMT/SCT*
n (%) n (%) n (%) n (%)
Current 73 (31.7) 7 (3.0) 4 (1.7) 6 (2.6)
Past 144 (62.6) 77 (33.5) 150 (65.2) 45 (19.8)
Planning/Upcoming 1 (0.4) 13 (5.7) 11 (4.8) 9 (4.0)
Never 12 (5.2) 133 (57.8) 64 (27.8) 167 (73.6)
*n=227. BMT/SCT: Bone marrow transplant/stem cell transplant
Table 3. Prevalence, Locations, and Sources of Child Pain (N=230).
Overall Active Post-Treatment Test of Group
(N=230) Treatment (n=151) Differences
(n=79)
n (%) Mean n (%) Mean n (%) Mean t Test p
(SD) (SD) (SD)
Pain Ratings
Average Pain 2.27 3.53 1.61 6.19 <.001
(2.28) (2.38) (1.93)
Worst Pain* 4.17 6.34 3.03 7.53 <.001
(3.53) (3.17) (3.15)
Least Pain 0.64 0.97 0.46 2.47 <.05
(1.34) (1.68) (1.09)
Location of Pain**
Head 74
(32.7%)
Torso 85
(37.6%)
Arms 19
(8.4%)
Legs 102
(45.1%)
Source of Pain**
Treatments 106
(46.3%)
Cancer 25
(10.9%)
Other Med Conditions 12
(5.2%)
Medical Procedures 48 (21%)
Everyday Pain 59
(25.8%)
*n=229; **Multiple answers possible.
Table 4. Parent use of Physical, Psychological and Pharmacological Pain Management Strategies
(N=230)*
Frequency of Use
No. Never Rarely Sometimes Often Always Mean Use
(0) (1) (2) (3) (4)
n n n n n n Mean (SD)
Physical and
Psychological
Strategies
Deep Breathing 224 88 29 73 24 10 1.28 (1.22)
Relaxation 223 109 38 55 17 4 0.96 (1.10)
Heat 223 105 32 44 33 9 1.14 (1.27)
Cold 223 109 43 46 22 3 0.96 (1.10)
Massage/Rubbing 224 55 17 58 71 23 1.96 (1.34)
Imagery 219 146 37 20 10 6 0.60 (1.02)
Distraction 223 44 17 46 78 38 2.22 (1.36)
Talking 222 60 17 85 51 9 1.69 (1.21)
Rest/Sleep 224 42 6 65 87 24 2.20 (1.25)
Prayer/Meditation 223 112 30 29 24 28 1.22 (1.47)
Number of Strategies 230 5.90 (3.18)
Used
Total Frequency of 215 14.25 (8.8)
Strategy Use
Pharmacological
Strategies
Acetaminophen 225 114 33 44 29 5 1.01 (1.93)
Ibuprofen 225 156 25 25 13 6 0.61 (1.06)
Naproxen 224 213 3 4 3 1 0.11 (0.52)
Codeine 224 197 16 6 4 1 0.20 (0.61)
Morphine / 225 158 25 24 14 4 0.58 (1.02)
Hydromorphone (short)
Morphine / 225 187 13 13 5 7 0.36 (0.93)
Hydromorphone
(long)
Gabapentin / Pregabalin 223 198 4 2 9 10 0.34 (1.01)
Amitriptyline 222 215 2 4 1 0 0.06 (0.35)
Number of Strategies 230 1.54 (1.57)
Used
Total Frequency of 222 3.24 (3.73)
Strategy Use
*Participants were not required to answer all questions resulting in some missing data.
Table 5. Parent and Child Variables Associated with Parent Pain Management Strategy Use (N=230)*.
No.* Pharmacological use (Yes) Pharmacological use (No) Test of Group Differences
(n=151) (n=79)
n n (%) Mean (SD) n (%) Mean (SD) t Test 2 p
Child Age 230 8.93 8.9 (4.39) 0.04 .97
(4.58)
Child Sex 230
Boy 76 (65.5) 40 (34.5) 0.002 1.00
Girl 75 (65.8) 39 (34.2)
Treatment Status 221
Active 63 (79.7) 16 (20.3) 10.60 <.01
Post 88 (58.3) 63 (41.7)
Pain (Average) 230 2.97 (2.34) 0.94 (1.42) -8.17 <.001
Pain (Worst) 230 5.39 (3.37) 1.86 (2.52) -8.92 <.001
Pain (Least) 230 0.81 (2.34) 0.30 (0.81) -3.32 <.01
Parent Confidence 224 5.46 (3.71) 7.00 (2.51) -4.23 <.001
PCS-P 218 31.14 29.23 (10.80) -1.29 .20
(10.00)
MAQ 218 57.58 57.44 (11.65) -0.08 .94
(12.67)
PPEP 222 23.96 25.33 (7.52) -1.30 .19
(7.46)
No. Physical/Psychological Physical/Psychological use (No) Test of Group Differences
use (Yes)
(n=202) (n=28)
n n (%) Mean (SD) n (%) Mean (SD) t Test 2 p
Child Age 230 8.76 (4.53) 10.10 (4.18) 1.47 .13
Child Sex 230
Boy 101 15 (12.9) 0.13 .84
Girl (87.1) 13 (11.4)
101
(88.6)
Treatment Status 221
Active 75 (95.0) 4 (5.1) 5.69 <.05
Post 127 24 (15.9)
(84.1)
Pain (Average) 230 2.56 (2.28) 0.18 (0.61) -12.04 <.001
Pain (Worst) 230 4.70 (3.41) 0.36 (1.25) -12.87 <.001
Pain (Least) 230 0.73 (1.41) 0.00 (0.00) -7.33 <.001
Parent Confidence 224 5.93 (2.79) 6.32 (2.34) -0.77 .45
PCS-P 218 30.74 28.54 (10.93) -1.01 .32
(10.22)
MAQ 218 57.67 56.56 (9.49) -0.55 .59
(12.66)
PPEP 222 24.50 24.04 (7.19) -0.317 .75
(7.55)
* Participants were not required to answer all questions resulting in some missing data. PCS-P: Pain Catastrophizing Scale –
Parent; MAQ: Medication Attitudes Questionnaire; PPEP: Parent Pain Expression Perception questionnaire.
View publication stats

Pain_in_Children_With_Cancer_Prevalence_Characteri

Uploaded by

Document Information

Copyright

Available Formats

Share this document

Share or Embed Document

Sharing Options

Did you find this document useful?

Is this content inappropriate?

Copyright:

Available Formats

Pain_in_Children_With_Cancer_Prevalence_Characteri

Uploaded by

Copyright:

Available Formats

See discussions, stats, and author profiles for this publication at: https://www.researchgate.

Pain in Children With Cancer: Prevalence, Characteristics, and Parent

Article in The Clinical journal of pain · July 2017

Perri R Tutelman Christine T. Chambers, Ph.D.

SEE PROFILE SEE PROFILE

Jennifer Stinson Jennifer A Parker

SEE PROFILE SEE PROFILE

The user has requested enhancement of the downloaded file.

Pain in Children with Cancer: Prevalence, Characteristics, and Parent Management

*Perri R. Tutelman, BHSc (Hons)a,b; Christine T. Chambers, PhDa,b,c; Jennifer N. Stinson,

a. Department of Psychology and Neuroscience, Dalhousie University, Canada

Conflicts of interest: The authors have no conflicts of interest to disclose.

outpatients report undertreated pain.14,19–21 Studies have documented numerous adverse

significant impact of unmanaged pain underscores the importance of ensuring that it is

effectively controlled both during and after treatment.

pharmacological, physical and psychological pain management strategies. Quantitatively,

strategies was not examined.

experiences of cancer-related pain and what parents do to manage it (pharmacologically,

medication attitudes, pain catastrophizing and confidence) and parents‘ administration of

pharmacological, physical, and psychological pain management strategies.

Participants were recruited to complete an online survey developed in partnership with

be a parent or caregiver (hereafter referred to as ‗parent‘) of a child (aged 0 to 18 years) with

by a panel of 12 parent/patient representatives (listed in the acknowledgements) to assess its

more treatments pending were considered to be on active treatment.

and validated by Stinson et al. (2015).

confident are you in your ability to make them feel better?‖

items across 3 subscales (rumination, magnification and helplessness), which evaluate

our sample was 0.92.

Knowledge of Pain Assessment - Parental knowledge of pain assessment was measured

sample was 0.82.

Descriptive statistics were used to characterize the sample demographics, prevalence,

assessed using 2 tests and Welch‘s independent t tests.

identified themselves (84.9%) and their children (79.0%) as Caucasian/White.

Child Disease Characteristics and Treatments

current, and upcoming parent-reported cancer-related treatments are outlined in Table 2.

Sources and Locations of Pain

(32.7%) arms (8.4%).

Use of Pharmacologic, Physical and Psychological Pain Management Strategies

reported using at least one physical or psychological strategy (87.8%) compared to a

pharmacological strategy (65.7%). On average, parents reported using approximately 2

pharmacological, compared to 6 physical and psychological strategies, and tended to use

physical/psychological strategy used was distraction, followed by rest/sleep, and talking.

Acetaminophen was the most frequently administered medication. Use of pharmacological,

regardless of whether they used physical or psychological strategies (t=-0.77, p=.45).

pain medication or their knowledge of pain assessment.

efficacy of pharmacological, physical, and psychological strategies for treatment-related pain

should be a priority area for future research.

Multimodal approaches to cancer pain management, including a combination of

management. A previous review17 of psychological and physical interventions for pediatric

distinct categories, however, their classification remains uncertain.50

administered pharmacological, physical and psychological pain management strategies. Worst,

pharmacological, physical and psychological strategy use. It is uncertain if parents of children

differences in effects across studies.

This study of parent-reported pain prevalence, characteristics, and management practices

family-centered interventions that effectively attenuate pain in this population.

Cancer: Challenges for the Twenty-First Century. J Clin Oncol 2010;28(15):2625-2634.

cancer. J Pain Symptom Manage 2000;19(5):363-377.

Study Group/Paediatric Oncology Nurses‘ Forum Palliative Care Working Group.

Symptoms in children/young people with progressive malignant disease: United Kingdom

Children‘s Cancer Study Group/Paediatric Oncology Nurses Forum survey. Pediatrics

Assoc Pediatr Oncol Nurses 2003;20(3):120-132.

5. Ljungman G, Kreuger A, Gordh T, Sörensen S. Pain in pediatric oncology: do the

hospitalized children with cancer. Oncol Nurs Forum 2011;38(5):E382-393.

symptoms during treatment: a prospective, longitudinal study. J Pain Symptom Manage