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\begin{document}

\title{Impact of Sociodemographic Factors, Stress, and Communication on Quality
of Life in Survivors of Pediatric Cancer}



\author[1]{Valdeoso Patterson}%
\author[1]{Anna Olsavsky}%
\author[1]{Dana Garcia}%
\author[1]{Malcolm Sutherland-Foggio}%
\author[1]{Kathryn Vannatta}%
\author[2]{Kemar Prussien}%
\author[2]{Heather Bemis}%
\author[2]{Bruce Compas}%
\author[1]{Cynthia Gerhardt}%
\affil[1]{Abigail Wexner Research Institute at Nationwide Children's Hospital}%
\affil[2]{Vanderbilt University}%


\vspace{-1em}



  
  \date{June 01, 2024}


\begingroup
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\selectlanguage{english}
\begin{abstract}
\textbf{Background:} While most research has largely focused on medical
risks associated with reduced quality of life (QOL) in survivors,
sociodemographic and family factors may also play a role. Thus, we
examined sociodemographic factors and family factors associated with
survivor QOL, including adolescent's cancer-specific stress, mother's
general stress, and mother--adolescent communication. \textbf{Methods:}
Mothers ( \emph{N}=80) and survivors (ages 10-23, \emph{N}=50) were
assessed 5 years following initial diagnosis. Mothers completed measures
regarding sociodemographic background adolescent's cancer-specific
stress, mother's general stress, mother--adolescent communication, and
adolescent QOL. Survivors also reported on their own QOL. Two
hierarchical multiple regressions examined predictors of: (a) mother's
report of adolescent QOL and (b) survivor's self-report of QOL.
\textbf{Results:} The final model predicting mother-reported adolescent
QOL was significant, \emph{F}(5,74)=21.18, \emph{p}\textless{}.001, and
explained 59\% of the variance in QOL. Significant predictors included
adolescent stress ( \selectlanguage{greek}\emph{β}\selectlanguage{english}=-0.37, \emph{p}\textless{}.001), mothers'
stress ( \selectlanguage{greek}\emph{β}\selectlanguage{english}=-0.42, \emph{p}\textless{}.001), and communication (
\selectlanguage{greek}\emph{β}\selectlanguage{english}=0.19, \emph{p}=.03). The final model predicting
survivor-reported QOL was also significant, \emph{F}(5,44)=5.16,
\emph{p}\textless{}.01 and explained 24\% of the variance in QOL.
Significant predictors included adolescent stress ( \selectlanguage{greek}\emph{β}\selectlanguage{english}=-.37,
\emph{p}=.01) and communication ( \selectlanguage{greek}\emph{β}\selectlanguage{english}=-.31, \emph{p}=.04).
Sociodemographic factors were not a significant predictor of QOL in any
model. \textbf{Conclusion:} Family stress and communication offer
potential points of intervention to improve QOL of pediatric cancer
survivors from mother and survivor perspectives. While additional
research is needed, healthcare professionals should encourage stress
management and strong mother--child communication to enhance survivors'
long-term QOL. Such interventions may be helpful, irrespective of known
sociodemographic factors that often affect health.%
\end{abstract}%



\sloppy


\textbf{Introduction}

Despite successful efforts to improve survival and reduce morbidity over
the past several decades, pediatric cancer remains a significant
stressor for families {[}1{]}. Although the diagnosis can occur in any
family, the resulting burdens can depend, in part, on the family's
sociodemographic background {[}2{]}. For example, income, parent
education, and household size can determine a family's ability to cover
the costs of treatment, travel to the hospital, and manage complex
regimens at home {[}2{]}. These factors can also determine the capacity
of caregivers to balance work and caregiving demands, resulting in risk
for financial toxicity {[}3{]}. Furthermore, pre-existing
sociodemographic and family stressors may be simultaneously exacerbated
by cancer-related stress, affecting how well families manage the burdens
of the disease. Thus, the family's success in navigating the pediatric
cancer experience may have significant implications for the child's
long-term quality of life (QOL).

QOL in childhood incorporates functioning in emotional, physical,
social, and academic domains {[}4{]}. Children on treatment for cancer
often experience significant impairment in QOL compared to children from
healthy populations {[}5{]}. Although attention to social determinants
of health have grown, limited research has examined sociodemographic
factors in the context of pediatric cancer and long-term QOL. However,
similar work has been conducted on stress as the outcome in pediatric
cancer populations. One study showed that at the bivariate level,
sociodemographic factors (i.e., single parenthood, family income,
education level, and race) were significantly associated with some but
not all indicators of mothers' and children's stress and distress near
diagnosis {[}2{]}. Another study found that children with advanced
cancer from low-income families experienced a higher prevalence of pain
and more distress compared with children from high-income families
{[}6{]}. Children from low-income families also reported worse QOL
{[}6{]}.

Parents of cancer survivors can face a multitude of stressors including
relapse, secondary effects of illness and treatment, continued costs, or
supporting siblings. One study showed that mothers of children on
treatment had higher levels of perceived stress and a less positive
image of themselves as parents than mothers of healthy children {[}7{]}.
Children also report significant stress during treatment, such as
disruptions in daily/role functioning, physical effects of treatment,
uncertainty about the disease, and fears about death {[}8,9{]}.
Specifically, children find impairment in daily/role functioning (e.g.,
not being able to do the things they used to do) more stressful than
uncertainty about their disease or chances for survival {[}8{]}. Thus,
when examining predictors of quality of life in pediatric cancer
survivors, it is important to consider both parental and child
experiences of cancer-related stress, in addition to sociodemographic
background and pre-existing family stress.

Cancer also creates demands relative to supportive communication between
parents and their child. Communication is an important aspect of the
parent-child relationship that demonstrates the level of trust,
intimacy, and conflict between the two {[}10{]}. Over the past 30 years,
there has been a shift from avoidance of communication about pediatric
cancer to an emphasis on parents and children having straightforward
discussions about diagnosis and prognosis {[}11{]}. For example,
relative to healthy controls, mothers' openness and problems in
communication may be similar over the first year after diagnosis or
relapse regardless of whether children had advanced or non-advanced
cancer {[}12{]}. One study found that childhood cancer survivors who
reported better quality relationships with their mothers and fathers
consistently reported better QOL {[}13{]}, while research in other
pediatric populations have linked parent-child communication with both
child adjustment and adherence {[}14,15,16{]}.

Despite the literature demonstrating the respective impact of
sociodemographic factors, parent and child stress, and parent-child
communication on quality of life, no studies to date have prospectively
examined the combined effects of these factors on the long-term quality
of life of pediatric cancer survivors. The present research examines
associations between early sociodemographic (e.g., mother age, mother
education, family income, number of children, number of parents, and
race), family stress (i.e., mother's general stress, adolescent's
cancer-specific stress), mother--adolescent communication on the quality
of life of survivors at five years' post-diagnosis. We hypothesized that
higher levels of cumulative sociodemographic risk, mother's general
stress, adolescent's cancer-specific stress, and lower quality of
mother-adolescent communication near diagnosis would predict lower
quality of life for survivors five years later.

\textbf{Methods}

\textbf{Procedure}

Participants were from a pilot study and a multisite study in which both
assessed, coping, communication, and adjustment in families of children
with cancer from diagnosis to five years post-diagnosis. Following
approval from the Institutional Review Board, eligible participants were
selected from cancer registries and recruited by research staff at two
large pediatric hospitals in the United States (one in the Midwest, one
in the Southeast). Participants were recruited following either an
initial cancer diagnosis or relapse. Parents were provided with
information about the study and gave their written consent for
participation. Children also gave their written consent or assent (for
ages 10-17). Paper and pencil surveys were then completed at their
convenience. After finishing the surveys at initial diagnosis (T1),
families were contacted for follow-up assessments at one (T2), three
(T3), and five years (T4) post diagnosis or relapse {[}17{]}. The
families were compensated for their time at each assessment.

\textbf{Participants}

Eligible children (a) had a primary cancer diagnosis or new recurrence
of cancer (b) were aged between 5-17 at time of recruitment (c) were
fluent in English (including parents). Children and parents were deemed
ineligible if they had a pre-existing neurodevelopmental disorder or
disability that precluded completion of measures. At the time of
enrollment, 336 families participated.

At five years post-diagnosis, 18\% (\emph{n} = 59) of children from
enrollment had passed away {[}17{]}. Of 277 approached families, 45\%
(\emph{n} = 124) participated. For the current manuscript, the final
sample included only mothers (N=80) and children (N=50) who completed
mother proxy-reported QOL and adolescent self-reported QOL at 5-year
follow up.

\textbf{Measures}

\emph{Demographic Questionnaire.} Family demographic characteristics
were provided by parents using a questionnaire that assessed factors
such as marital status, education, occupation, religious beliefs,
income, and number and age of children at enrollment (T1). A cumulative
sociodemographic score was created from the information collected in
this measure.

\emph{Perceived Stress Scale (PSS).} This widely used 10-item instrument
assesses subjective experiences of psychological stress {[}2,17{]}.
Mothers rated each item on a 4-point scale of how often each item was
true for them within the past month {[}2{]}. Internal consistency,
test-retest ability, and concurrent and predictive validity have all
been established {[}18{]}. Internal consistency in the current sample
was low, \selectlanguage{greek}\emph{α} \selectlanguage{english}=.55.

\emph{Responses to Stress Questionnaire- Pediatric Cancer Version
(RSQ-PC).} The RSQ-PC is a 57-item measure that includes a list of 11
cancer-related stressors (e.g., missing school, frequent hospital or
clinic visits, changes in personal appearance) using a four-point scale
ranking items from ``Not at all'' to ``Very'' {[}19{]}. Mothers provided
proxy-report on their children. Prorated mean scores were calculated for
overall cancer-related stress. The RSQ-PC has been used extensively with
acceptable reliability and validity {[}20,21,22{]}. Internal consistency
in this sample was high, \selectlanguage{greek}\emph{α} \selectlanguage{english}=.92.

\emph{Parent--Adolescent Communication Scale (PACS).} This questionnaire
includes 20-items rated 1-5 regarding the quality of general
communication between parents and their adolescents {[}23{]}. The
measure includes 2 subscales: (a) Open Family Communication and b)
Problems in Family Communication. A total communication score is
calculated by coding the open family communication subscale so that
higher scores indicate more openness, and reverse coding the problems in
family communication subscale so that higher scores indicate fewer
problems in parent--adolescent communication. The scales demonstrate
internal consistency and adequate 4-week test-retest reliability
{[}23{]}. Mother's provided self-report of communication with their
adolescent. Internal consistency in the current sample was
acceptable,\selectlanguage{greek}\emph{α} \selectlanguage{english}=.70.

\emph{Pediatric Quality of Life Inventory Version 4.0 (PedsQL).} The
PedsQL 4.0 is an established measure of health-related quality of life
(HRQOL) and includes 23-items across four subscales: physical,
emotional, social, and school functioning {[}24{]}. Items are reverse
coded and linearly transformed to a scale of 0-100, with higher scores
indicating better HRQOL. Parents provided proxy-report of their child's
QOL, and survivors provided self-report. One version was used for
children ages 8-12 years old, and another was used for children ages
13-18 years old. The PedsQL has been used extensively to evaluate the
HRQOL of children with chronic health problems {[}24{]}. The reliability
and validity of this instrument have been established in previous work
for youth aged 5-18 {[}25{]}. Internal consistencies in the current
sample were \selectlanguage{greek}\emph{α=}\selectlanguage{english} 0.89 for mother proxy-report, and \selectlanguage{greek}\emph{α} \selectlanguage{english}= 0.88
for child self-report, which are deemed good.

For the current manuscript, each measure was administered at enrollment,
except the Peds-QL, which was administered at 5-year follow up.

\textbf{Analysis Plan}

Analyses were conducted using SPSS (v.26). Descriptive statistics were
conducted to examine the frequencies, mean and standard deviation of
sociodemographic factors, cancer-specific stress, general stress,
parent-adolescent communication, and HRQOL. Similar to previous work,
the impact of sociodemographic factors was examined by creating a
cumulative sociodemographic score {[}2{]}. Each sociodemographic
variable of interest was dichotomized so that participants scored a 0 or
1 to indicate lesser or greater risk {[}2{]}. The scoring is as follows:
multi-adult (0) vs. single-adult (1) household status, income
\textgreater{} \$50,000 (0) vs. income [?] \$50,000 (1), mother education
\textgreater{} 12\textsuperscript{th} grade (0) vs. mother education [?]
12\textsuperscript{th} grade (1), White race (0) vs. non-White race (1),
and 0-2 children living in the household (0) vs. 3 or more children
living in the household (1). Bivariate correlations were conducted to
examine associations between the sociodemographic score, mother's
general stress, adolescent's cancer-related stress, mother-adolescent
communication, and survivor HRQOL (mother proxy-report and child
self-report) at 5 years' post-diagnosis (Table 1).

Two hierarchical regressions were used to examine predictors of: (a)
mother's proxy-report of survivor QOL and (b) survivor's self-report of
HRQOL. In Step 1, only mother's age and the sociodemographic score were
included. Step 2 included adolescent's cancer specific stress and
mother's general stress. Lastly, Step 3 added mother-adolescent
communication.

\textbf{Results}

\textbf{Sample Characteristics}

Table 1 summarizes descriptive information for mother and child factors,
as well as the predictor and outcome variables. Most mothers were on
average 37.83 years old (\emph{SD} = 7.59), White (\emph{n} = 69;
86.3\%), partnered (\emph{n} = 59; 73.8\%), and had completed at least a
high school diploma (\emph{n} = 65; 81.3\%). The number of families
making above or below \$50,000 per year was similar. Survivors were on
average 15.43 years old (\emph{SD} = 3.87) at T4 and mostly male (n =
41; 51.2\%). A large portion of survivors were diagnosed with either
Leukemia (n = 32; 40\%) or other solid tumors (n = 28; 35\%) and on
average had been off treatment for 3.61 years (\emph{SD} = 1.23).

\textbf{Descriptive Statistics and Correlations among Variables of
Interest}

Mean QOL scores based on mother proxy-report and survivor report were in
the normal range and above clinical cutoff scores (65.4 and 69.7,
respectively) {[}24{]}. Initial examination of associations between
demographic/medical factors (i.e., sociodemographic score, survivor age,
survivor sex, mother age, time since treatment) and QOL revealed only a
significant association between the sociodemographic score and
mother-reported survivor QOL, \emph{r} (80)=-.42,\emph{p}
\textless{}.001. However, bivariate correlations revealed significant
associations between mother-reported survivor QOL and mother-reported
survivor's cancer specific stress, mother's general stress, and
parent-adolescent communication (see Table 2). Bivariate correlations
also revealed a significant association between survivor-reported QOL
and mother report of survivor's cancer-specific stress (Table 2).

\textbf{Longitudinal Predictors of Mother-reported Survivor Quality of
Life}

A hierarchical regression model examined baseline predictors of
mother-report of survivor quality of life at 5-year follow-up. The first
step examined mother's age and the sociodemographic score. This model
was significant, \emph{F} (2,77) = 8.38, \emph{p} \textless{} .001, and
explained 18\% of the variance in QOL. The sociodemographic score was
the sole significant predictor (\selectlanguage{greek}\emph{β} \selectlanguage{english}= -0.39, \emph{p} \textless{}
.001). The second step added mother-report of survivor's cancer-specific
stress and mother's general stress, which contributed an additional 38\%
of explained variance in QOL, \selectlanguage{greek}\emph{ΔF}\selectlanguage{english} (2,75)=32.41,\emph{p}
\textless{}.001. Both mother-report of survivor's cancer-specific stress
(\selectlanguage{greek}\emph{β} \selectlanguage{english}= -0.39, \emph{p} \textless{} .001) and mother's general
stress (\selectlanguage{greek}\emph{β} \selectlanguage{english}= -0.46, \emph{p} \textless{} .001) were significant
predictors of QOL, but the sociodemographic score was no longer a
significant predictor. Finally, mother--adolescent communication was
added in the third step of the model and contributed an additional 3\%
of variance in QOL, \selectlanguage{greek}\emph{ΔF}\selectlanguage{english} (1,74) = 5.26, \emph{p} = .03. This final
model was significant, \emph{F} (5,74) = 21.18, \emph{p}\textless{}
.001, and explained 59\% of the total variance. With the addition of
mother--adolescent communication, survivor's stress (\selectlanguage{greek}\emph{β} \selectlanguage{english}= -0.37,
\emph{p} \textless{} .001), mother stress (\selectlanguage{greek}\emph{β} \selectlanguage{english}= -0.42, \emph{p}
\textless{} .001), and communication (\selectlanguage{greek}\emph{β} \selectlanguage{english}= 0.19,\emph{p} = .03)
were all significant predictors of quality of life (Table 3).

\textbf{Longitudinal Predictors of Survivor-reported Quality of Life}

A second hierarchical regression model examined predictors of
survivor-reported QOL using the same variables in the first model. In
the first step, we examined mother's age and the sociodemographic score.
This model was not significant, \emph{F} (2,47) = 0.70, \emph{p} = .504,
as it only explained 3\% of the variance in QOL. In the second step,
mother-report of survivor's cancer-specific stress and mother's general
stress were added. This model was significant, \selectlanguage{greek}\emph{ΔF}\selectlanguage{english} (2,45) =
3.50,\emph{p} = .039, and added 13\% of explained variance. Only
mother-report of survivor's cancer-specific stress (\selectlanguage{greek}\emph{β} \selectlanguage{english}=
-0.56,\emph{p} = .022) was a significant predictor. In the third and
final step, mother--adolescent communication was added and contributed
8\% of explained variance to the model, \selectlanguage{greek}\emph{ΔF}\selectlanguage{english} (1,44) = 4.37, p =
.042.With the addition of mother--adolescent communication, survivor's
cancer-related stress (\selectlanguage{greek}\emph{β =}\selectlanguage{english} -0.37, p = .011) and communication
(\selectlanguage{greek}\emph{β} \selectlanguage{english}= -0.31, p = .042) were significant predictors of
survivor-reported quality of life. This final model was significant as
well, \emph{F} (5,44) = 2.71, \emph{p} = .032 and explained 24\% of the
variance in the long-term QOL of survivors (Table 4).

\textbf{Discussion}

Limited research has examined early sociodemographic and family factors
near diagnosis that predict long-term QOL among childhood cancer
survivors. The goal of this study was to examine the relative impact of
sociodemographic factors using a cumulative risk score, mother's stress,
survivor's cancer-specific stress, and mother-adolescent communication
on later QOL of survivors. We expected that a higher cumulative
sociodemographic score (i.e., higher risk) would lead to lower levels of
QOL in survivors. Survivor QOL was, on average, in the normative range
at 5-year follow-up. Contrary to our hypothesis, the sociodemographic
score was not a significant predictor of QOL when other factors like
cancer-related stress and communication, were considered. While these
results did not align with our expectations for the sociodemographic
score, they demonstrate the lasting importance of more proximal family
factors in relation to later QOL in long-term survivors.

In both the mother-reported model and the survivor-reported model,
earlier exposure to stress consistently predicted long-term QOL, whether
it was survivor's cancer-specific stress or mother's general stress. The
mother-reported model explained almost 60\% of the variance in survivor
QOL, with survivor's cancer-specific stress and mother's general stress
contributing 38\% of explained variance in the model. These results
support our hypothesis about stress and are consistent with literature
finding that stress and negative emotions in response to a chronic
illness, such as cancer, can affect QOL {[}26{]}. For survivor-report of
QOL, the addition of survivor's cancer-specific stress and mother's
general stress contributed 13\% of explained variance in QOL, with the
overall model explaining 24\% of the variance in long-term QOL. However,
only cancer-specific stress was a significant predictor. Thus,
survivors' QOL may be affected more by their own stress specifically
related to their diagnosis, than their mother's general stress. To our
knowledge, this is the first study that has examined the longitudinal
impact of general and cancer-related stress on survivor-reported QOL in
a pediatric cancer sample.

In both models, higher quality of mother-adolescent communication was a
significant predictor of better QOL, particularly with respect to
child-report of QOL. These results support our hypothesis that
communication has a significant impact on survivors' QOL. Previous
research in pediatric populations has found that a high quality of
family communication enhanced adolescents' life satisfaction {[}27{]}.
Other studies have also identified family communication as a correlate
of important developmental, psychosocial and health outcomes
{[}14,28,29{]}.

While research has largely focused on medical predictors of QOL in
pediatric cancer, few studies have examined the longitudinal impact of
family factors near diagnosis, such as stress and communication, on
later QOL. The present research shows that these factors should not be
overlooked. Each of these factors were both associated with QOL and were
significant predictors over time. Although cumulative sociodemographic
factors did not predict long-term QOL in our final models, they were
significantly correlated with mother-reported QOL. They were also
associated with early outcomes, which is similar to previous findings
{[}2{]}, and were significantly correlated with mother's general stress,
adolescent's cancer-specific stress, and mother-adolescent communication
near diagnosis. Therefore, future research should continue to examine
the role of sociodemographic factors and key outcomes over time.

Our study was limited by several factors. First, our sample was
primarily White and non-Hispanic. Similar research should be conducted
with a more diverse sample to examine if associations may vary as a
function of race or ethnicity in regard to sociodemographic factors and
QOL. We also examined only survivor-report and mother-report of family
factors. Future research should solicit perspectives from fathers in
addition to mothers and survivors to examine data from both parents.
Importantly, the mother-proxy model may have been affected by common
method variance, and multiple informants are necessary to test more
robust models. Lastly our sample was comprised of mothers who were
largely partnered, had few children per household, and had an education
of at least a high school diploma, resulting in a relatively low-risk
sample. This could have explained why the cumulative sociodemographic
score was no longer a factor when stress and communication were examined
concurrently. Future research should continue to identify other social
and family factors early in the cancer trajectory that may influence the
long-term QOL of pediatric cancer survivors.

Our study also had several key strengths. First, the sample was
recruited soon after a child was diagnosed with cancer or had relapsed
and was followed longitudinally over five years. This allowed us to
identify early predictors of later outcomes in long-term survivorship.
Second, the sample was inclusive in terms of different diagnoses,
allowing us to examine QOL in children affected by pediatric cancer more
broadly, rather than focusing on one type of diagnosis. This research is
unique in its family-centered approach assessing both general stress and
cancer-specific stress, as well as multiple viewpoints (parent
self-report, parent proxy-report of survivor, survivor self-report).
Limited research has examined the contributions of sociodemographic and
family factors that predict QOL in youth affected by pediatric cancer.

This information can help inform family-centered care to improve
long-term QOL in pediatric cancer survivors. Despite the effects of
cumulative sociodemographic risk, family stress and communication may
offer potential points of intervention to improve QOL of pediatric
cancer survivors over time. Clinicians should assess family and
cancer-related stress, as well as facilitate open and honest
communication early in treatment to reduce risks. Previous psychosocial
interventions have shown promise in the areas of physical,
psychological, and social-relational aspects of quality of life {[}30,
31{]}. While additional research is needed, healthcare professionals
should encourage stress management and strong mother--child
communication to enhance survivors' long-term QOL. Such interventions
may be helpful, irrespective of known sociodemographic risk factors that
often affect health.

\textbf{Conflict of Interest Statement}

The authors declare that there are no conflicts of interest.

\textbf{Acknowledgements}

We would like to thank the families who participated and our funding
source, the National Cancer Institute and intramural funding from the
Abigail Wexner Research Institute at Nationwide Children's Hospital.

\par\null

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\end{enumerate}

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