The Role of Beliefs in the Relationship Between Health Problems and Posttraumatic Stress in...

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The Role of Beliefs in the Relationship Between Health Problems and Posttraumatic Stress in Adolescent and Young Adult Cancer Survivors Lisa A. Schwartz Anne E. Kazak Branlyn W. DeRosa Matthew C. Hocking Wendy L. Hobbie Jill P. Ginsberg Published online: 1 October 2011 Ó Springer Science+Business Media, LLC 2011 Abstract In addition to the potential for ongoing health concerns, adolescent and young adult (AYA) childhood cancer survivors frequently report posttraumatic stress symptoms (PTSS). The current study examines whether beliefs about health moderate the relationship between the number of health problems and PTSS 2 months later in 140 survivors. Beliefs, as measured by scales of the Health Competence Beliefs Inventory (HCBI), negatively related to PTSS while health problems positively related to PTSS. Three scales of the HCBI-health perceptions, satisfaction with healthcare and cognitive competence—were signifi- cant moderators. The relationship between health problems and PTSS was stronger in the presence of less adaptive beliefs. These beliefs represent potentially malleable intervention targets for reducing PTSS in childhood cancer survivors. Keywords Posttraumatic stress Á Cancer Á Beliefs Á Health problems Adolescent and young adult (AYA) survivors of childhood cancer are no longer unusual; one out of every 640 adults is a survivor of childhood cancer and that number is increasing (Hewitt, Weiner, & Simone, 2003). Despite being cured of their original cancer, survivors are vulner- able to medical (e.g., cardiac and pulmonary disease, en- docrinopathies, infertility) and psychosocial (e.g., distress, cognitive problems) sequelae secondary to their disease and treatment and are at risk for second malignancies. Approximately 62% of AYA survivors have at least one chronic health condition (e.g., cardiac or pulmonary dis- ease, endocrine or growth problems) and these individuals are eight times more-likely to have a severe or life- threatening health condition than sibling controls (Oeffin- ger et al., 2006). Adding further to the vulnerability of this group is evidence for non-engagement in necessary healthcare; less than 20% of survivors receive cancer- related follow-up care that address their risks and necessary surveillance, and these visits decline during the AYA period (Nathan et al., 2009). Because of cumulative cancer-related stressors and events that may serve as traumatic events (Kazak, Scheider, & Kassam-Adams, 2009), coupled with increasing cognitive maturity that facilitates reflection of the cancer experience and implications, AYA survivors are at risk for developing posttraumatic stress disorder (PTSD) and frequently report posttraumatic stress symptoms (PTSS). Up to 35% have a current or prior diagnosis of PTSD (Hobbie et al., 2000; Pelcovitz et al., 1998; Rourke et al., 2007; Schwartz & Drotar, 2006) and up to 50% of AYA survivors experience PTSS in the form of intrusive, avoidant, and arousal symp- toms (Brown et al., 2003; Hobbie et al., 2000; Langeveld et al., 2004). These findings are consistent with current conceptualizations of PTSD in that physical illness and associated experiences and fears may be a significant risk factor for medical traumatic stress and PTSD (Kazak et al., 2006). Health problems relate to PTSS in AYA survivors (Gerhardt et al., 2007; Langeveld et al., 2004; Rourke et al., L. A. Schwartz (&) Á A. E. Kazak Á B. W. DeRosa Á M. C. Hocking Á W. L. Hobbie Á J. P. Ginsberg The Children’s Hospital of Philadelphia, 34th and Civic Center Blvd., CHOP North #1484, Philadelphia, PA 19104, USA e-mail: [email protected] L. A. Schwartz Á A. E. Kazak Á J. P. Ginsberg The University of Pennsylvania School of Medicine, Philadelphia, PA, USA 123 J Clin Psychol Med Settings (2012) 19:138–146 DOI 10.1007/s10880-011-9264-1

Transcript of The Role of Beliefs in the Relationship Between Health Problems and Posttraumatic Stress in...

Page 1: The Role of Beliefs in the Relationship Between Health Problems and Posttraumatic Stress in Adolescent and Young Adult Cancer Survivors

The Role of Beliefs in the Relationship Between Health Problemsand Posttraumatic Stress in Adolescent and Young Adult CancerSurvivors

Lisa A. Schwartz • Anne E. Kazak •

Branlyn W. DeRosa • Matthew C. Hocking •

Wendy L. Hobbie • Jill P. Ginsberg

Published online: 1 October 2011

� Springer Science+Business Media, LLC 2011

Abstract In addition to the potential for ongoing health

concerns, adolescent and young adult (AYA) childhood

cancer survivors frequently report posttraumatic stress

symptoms (PTSS). The current study examines whether

beliefs about health moderate the relationship between the

number of health problems and PTSS 2 months later in 140

survivors. Beliefs, as measured by scales of the Health

Competence Beliefs Inventory (HCBI), negatively related

to PTSS while health problems positively related to PTSS.

Three scales of the HCBI-health perceptions, satisfaction

with healthcare and cognitive competence—were signifi-

cant moderators. The relationship between health problems

and PTSS was stronger in the presence of less adaptive

beliefs. These beliefs represent potentially malleable

intervention targets for reducing PTSS in childhood cancer

survivors.

Keywords Posttraumatic stress � Cancer � Beliefs �Health problems

Adolescent and young adult (AYA) survivors of childhood

cancer are no longer unusual; one out of every 640 adults

is a survivor of childhood cancer and that number is

increasing (Hewitt, Weiner, & Simone, 2003). Despite

being cured of their original cancer, survivors are vulner-

able to medical (e.g., cardiac and pulmonary disease, en-

docrinopathies, infertility) and psychosocial (e.g., distress,

cognitive problems) sequelae secondary to their disease

and treatment and are at risk for second malignancies.

Approximately 62% of AYA survivors have at least one

chronic health condition (e.g., cardiac or pulmonary dis-

ease, endocrine or growth problems) and these individuals

are eight times more-likely to have a severe or life-

threatening health condition than sibling controls (Oeffin-

ger et al., 2006). Adding further to the vulnerability of this

group is evidence for non-engagement in necessary

healthcare; less than 20% of survivors receive cancer-

related follow-up care that address their risks and necessary

surveillance, and these visits decline during the AYA

period (Nathan et al., 2009).

Because of cumulative cancer-related stressors and events

that may serve as traumatic events (Kazak, Scheider, &

Kassam-Adams, 2009), coupled with increasing cognitive

maturity that facilitates reflection of the cancer experience

and implications, AYA survivors are at risk for developing

posttraumatic stress disorder (PTSD) and frequently report

posttraumatic stress symptoms (PTSS). Up to 35% have a

current or prior diagnosis of PTSD (Hobbie et al., 2000;

Pelcovitz et al., 1998; Rourke et al., 2007; Schwartz &

Drotar, 2006) and up to 50% of AYA survivors experience

PTSS in the form of intrusive, avoidant, and arousal symp-

toms (Brown et al., 2003; Hobbie et al., 2000; Langeveld

et al., 2004). These findings are consistent with current

conceptualizations of PTSD in that physical illness and

associated experiences and fears may be a significant risk

factor for medical traumatic stress and PTSD (Kazak et al.,

2006).

Health problems relate to PTSS in AYA survivors

(Gerhardt et al., 2007; Langeveld et al., 2004; Rourke et al.,

L. A. Schwartz (&) � A. E. Kazak � B. W. DeRosa �M. C. Hocking � W. L. Hobbie � J. P. Ginsberg

The Children’s Hospital of Philadelphia, 34th and Civic Center

Blvd., CHOP North #1484, Philadelphia, PA 19104, USA

e-mail: [email protected]

L. A. Schwartz � A. E. Kazak � J. P. Ginsberg

The University of Pennsylvania School of Medicine,

Philadelphia, PA, USA

123

J Clin Psychol Med Settings (2012) 19:138–146

DOI 10.1007/s10880-011-9264-1

Page 2: The Role of Beliefs in the Relationship Between Health Problems and Posttraumatic Stress in Adolescent and Young Adult Cancer Survivors

2007; Schwartz & Drotar, 2006). This relationship is not

surprising given the late effects of survivors that increase

with age and often emerge in young adulthood (Oeffinger

et al., 2004). Late effects refer to the sequelae of their

disease or treatment that can include any organ system

(e.g., endocrine, pulmonary, cardiac), cognitive deficits,

and even second cancer diagnoses (Oeffinger et al., 2006).

Further, as AYA survivors become more autonomous in

their health care management, providers may have more

direct conversations with survivors about their late effects

and/or future risk of late effects that may increase survi-

vors’ anxiety. Also, in general, health problems have been

found to relate to PTSS in other populations (Lawler,

Ouimette, & Dahlstedt, 2005; Oeffinger et al., 2006; Oui-

mette et al., 2004; Stein, McQuaid, Pedrelli, Lenox, &

McCahill, 2000).

PTSS have important implications for cancer survivors

in terms of their physical and psychological health. The

increase in distress and anxiety related to PTSS can relate

to health harming behaviors that exacerbate their late

effects, or risk for future late effects or new cancer diag-

noses (Clarke & Eiser, 2007; Lee, Santacroce, & Sadler,

2007). Further, PTSS have been hypothesized to impact

engagement in follow-up care in this population (Rourke

et al., 2007). Finally, PTSS have been shown to relate to

psychological impairment, reduced quality of life, and

difficulty with achievement of developmental tasks of

young adulthood for young adult survivors (Rourke et al.,

2007; Schwartz & Drotar, 2006).

Beliefs play an important role in understanding trau-

matic responses and in intervention (Kazak, McClure et al.,

2004; Luszczynska, Benight, & Cieslak, 2009). In the

pediatric oncology literature, caregiver beliefs about the

likelihood of cancer- and treatment-related suffering,

death, and devastation of the family related to higher levels

of PTSS (Kazak, McClure et al., 2004). Child and ado-

lescent survivor beliefs related to the severity of past life

threat also have been related to PTSS (Barakat et al., 1997;

Stuber et al., 1997). Among AYA survivors, worse per-

ceived severity of medical late effects and higher levels of

perceived current life threat predicted whether or not the

survivor had a diagnosis of PTSD (Rourke et al., 2007).

Thus, beliefs may similarly play a role as potentially

malleable factors to reduce PTSS in AYA cancer survivors.

Because of AYA’s increasing autonomy and awareness

of the health implications of cancer survivorship, adaptive

beliefs about health and health-related competencies may

mitigate PTSS in AYA survivors experiencing health

problems. In order to assess beliefs about health specifi-

cally relevant to AYAs, the Health Competence Beliefs

Inventory (HCBI) (DeRosa et al., 2011) was developed.

Health competence beliefs refer to a multidimensional set

of perceptions about health and well-being, including

beliefs about current and future health concerns, ability to

manage medical issues, and ability to relate to others

(DeRosa et al., 2011). Recent findings from our work

indicate that AYA survivors have less competent health

beliefs than controls (Kazak et al., 2010). As measured by

the HCBI, beliefs about health perceptions, satisfaction

with healthcare, cognitive competence, and autonomy may

influence the relationship between health and PTSS in this

population, and, thus, may be viable targets of intervention.

In other words, beliefs may help us understand under what

conditions health problems and PTSS are linked.

To our knowledge, no studies have examined the role of

beliefs about health and well-being in the relationship

between health problems and PTSS in childhood cancer

survivors or other populations. Thus, using the same

sample of AYA survivors on which the HCBI was vali-

dated, the current study tests how health competence

beliefs interact with health problems to relate to PTSS. It

was hypothesized that the four belief constructs measured

by the HCBI–health perceptions, satisfaction with health-

care, cognitive competence, and autonomy—would mod-

erate the relationship between the number of patient-

reported health problems at a clinic visit and PTSS

2 months later.

Methods

Participants

Participants were 140 AYA survivors of childhood cancer

recruited as part of a larger project examining psycholog-

ical and health outcomes in survivors. Inclusion criteria

included a diagnosis of cancer before age 21, at least

5 years from diagnosis, 2 or more years from the com-

pletion of medical treatment for cancer, English speaking,

and ability to read at the fifth grade level. Survivors of

childhood brain tumors were excluded due to the likelihood

of cognitive deficits limiting their ability to complete the

study. Survivors ranged in age from 16 to 29 years

(M = 20.3, SD = 3.2) and 55.4% of the sample was

female. Cancer diagnoses included leukemias (42.9%),

lymphomas (20.7%), and solid tumors (36.4%). The aver-

age number of years since diagnosis was 11.85 (M = 4.56;

range = 5–24). The sample was predominantly Caucasian

(88.5%) but also included participants who were African–

American (4.3%), Asian (3.6%), Hispanic (2.2%) and more

than one race or unknown (1.4%). Educational attainment

of survivors included current high school student (25.9%),

high school graduate (12.2%), attended some college

(40.3%), or 4 year college graduate or greater (21.6%).

Fifty-one (36.4%) survivors reported being in a committed

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relationship, nine of whom were married. In terms of

family income, 30 survivors reported less than $50,000, 52

survivors reported $50,000 to $99,999, 46 reported

$100,000 or more, and 12 did not report on family income.

The majority (63.6%) reported a personal income of less

than $10,000. Thus, it is suspected that most AYA’s esti-

mated the income of their family of origin.

Procedures

Survivors were recruited consecutively at their annual visit

to a childhood cancer survivorship clinic at a large pedi-

atric medical facility. Informed consent or assent for those

survivors under age 18 was obtained during the clinic visit.

Of 221 approached, 191 (86%) consented to the study, 167

(87% of consented) completed baseline measures during or

following their clinic visit, and 139 (73% of consented)

completed follow-up measures via mail approximately

2 months after the initial appointment. Participants were

compensated $20 and $30 for completing baseline and

follow-up measures, respectively. All study procedures

were approved by the institutional review board.

Measures

Health Problems

The Health Knowledge Inventory (HKI) (Schwartz et al.,

2010) measures self-reported health problems in AYAs

with and without a history of cancer. Clinical expertise

(from both local providers and nationally recognized

experts) and literature reviews on late effects were used to

develop the 35 items (health problems). Participants

endorse whether or not they have 35 categories of health

problems that are potential late effects of cancer treatment.

In other words, the measure is presented as a symptom

checklist. Participants are provided with a list of health

problems with examples (e.g., heart/blood problems: weak

heart, chest pain, irregular heartbeat, high blood pressure)

and asked to endorse (Yes/no) whether or not they have

each of the 35 potential categories of problems. The

problems include those affecting organ systems referred to

as organic/major (e.g., cardiac, pulmonary, blood disor-

ders) and more general and somatic problems referred to as

constitutional/other (e.g., balance, sleep, growth). There is

no overlap among problems. The total number of problem

endorsements is summed into a total score of health

problems (maximum of 35). Prior analysis from the same

dataset revealed that overall percent agreement of report of

problems between survivors and their providers was 86.8%

(Schwartz et al., 2008).

Health Competence Beliefs

The Health Competence Beliefs Inventory (HCBI)

(DeRosa et al., 2011) was developed using an iterative pro-

cess of inductive and deductive methods. A multi-disci-

plinary team developed items that were pilot tested,

modified, and then subjected to a large validation study with

AYAs who survived cancer and who did not have history of

chronic illness. Factor analysis resulted in a 21-item measure

that assesses health-related beliefs across four factors: (1)

health perceptions (six items; scores ranging 6–24)—current

health and the possibility of future health problems (e.g., My

future health is very uncertain, I am not as healthy as other

people my age); (2) satisfaction with healthcare (five items;

scores ranging 4–20)—engagement with and effectiveness

of healthcare (e.g., My doctors understand my medical his-

tory, I can reach my doctor or nurse by phone or email when I

need to); (3) cognitive competence (five items; scores

ranging 4–20)—perceived cognitive ability, memory (e.g.,

Most people my age are smarter than me, I learn new things

as easily as other people); and (4) Autonomy (five items;

scores ranging 4–20)—independence from their family and

their ability to accomplish their healthcare independently

(e.g., I prefer having my parents with me at doctor’s

appointments, I rely on my parents or siblings more than

other people my age). Participants rate the extent to which

they agree with the statements on a four point scale. Higher

scores indicate beliefs that are more adaptive and that have

been found to relate to positive psychosocial functioning

(DeRosa et al., 2011). Specifically, higher scores on the

subscales indicate positive beliefs about health status, cog-

nitive abilities, and ability to function autonomously, and

greater satisfaction with healthcare. Internal consistencies

for the factors range from .75–.87.

Posttraumatic Stress

The Posttraumatic Stress Checklist-Civilian Version

(PCL-C) (Weathers & Ford, 1996) is a 17-item self-report

questionnaire that assesses five symptoms of arousal

(e.g., having difficulty concentrating), five symptoms of

re-experiencing (e.g., repeated, disturbing memories,

thoughts, or images of a stressful experience), and seven

symptoms of avoidance (e.g., avoiding activities or situa-

tions because they reminded you of a stressful experience)

based on DSM-IV criteria for PTSD. It has been shown to

demonstrate excellent reliability and validity (Ruggiero,

Del Ben, Scotti, & Rabalais, 2003; Smith, Redd, DuHamel,

Vickberg, & Ricketts, 1999; Weathers & Ford, 1996) and

has been used with childhood cancer survivors (Schwartz

& Drotar, 2006). Participants rate the level of distress

associated with each symptom on a five point scale

(1 = not at all; 5 = extremely). Scores range from 17 to

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85. The PCL-C total score is used to measure PTSS and has

excellent internal consistency in this sample (a = .91). A

score of 40 or above indicates significant PTSS (Manne,

DuHamel, Gallelli, Sorgen, & Redd, 1998). The measure

can also be scored to indicate endorsement of DSM-IV

criteria for PTSD (Weathers & Ford, 1996). Specifically, a

score of three or higher on an item indicates endorsement

of that symptom. Subsequently, whether or not a respon-

dent meets criteria for arousal, re-experiencing, and

avoidance clusters can be derived based on symptom

endorsement. The PTSS total score was used as the main

outcome in the current study. Because survivors are likely

to experience general distress at a clinic visit that may

artificially inflate reports of PTSS, and the likelihood that

health problems serve as traumatic stress triggers of cancer

survivors, PTSS was measured 2 months after the clinic

visit.

Data Analysis

Descriptive statistics were calculated to characterize the

sample and the variables of interest in the moderation

model. Bivariate correlations were also used to identify the

relationship between patient-reported number of health

problems (HKI) at baseline and PTSS (PCL-C) 2 months

later.

Following Aiken and West (1991) and Holmbeck (2002)

recommendations for conducting moderation analyses,

regressions were used to identify whether HCBI subscales

moderated the relationship between health problems and

PTSS. In other words, we were interested in identifying

whether or not beliefs interacted with health problems to

affect the relationship between health problems and PTSS.

The independent variables (i.e., HKI total score; four HCBI

subscale scores) were first centered (i.e., sample M sub-

tracted from raw score).

Then, following standard procedures for testing inter-

actions between variables, four interaction terms were

created (i.e., the product of the centered HKI total health

problems score [predictor main effect] and the centered

HCBI subscale score [moderator main effect]) (Aiken &

West, 1991). As described by Aiken and West (1991),

centering the variables before creating interaction terms

reduces multicollinearity between main effects and inter-

action terms and facilitates interpretation of simple slope

post-hoc analysis.

Four regressions were conducted, representing the four

potential moderators of the HCBI subscales. In each

regression, the main effects (centered HKI and HCBI

subscale score) were entered in step one and the associated

interaction term was entered in step two to predict PTSS.

Post-hoc probing of the interaction terms was conducted to

test if the slopes were significantly different from zero.

That is, post-hoc probing tested whether or not the rela-

tionship between health problems and PTSS was significant

for both high and low levels of health competence beliefs.

In order to do so, it was necessary to create two new

conditional moderator variables of high and low values for

each HCBI subscale variable that emerged as a significant

interaction term in the original regressions. This was done

by creating variables that represented high values of the

moderator variables (each respondents’ score ?1 SD of the

mean of the variable) and low values of the moderator

variable (each respondents’ score -1 SD of the mean of

the variable). Holmbeck (2002) noted, the ±SD is a con-

vention that can be replaced with other theoretically

meaningful high or low values. As described by Holmbeck

(2002), the interaction terms of the HKI score by the high

or low values of the HCBI scales were then computed.

Next, two separate regressions tested the effect of the

interaction term on PTSS after controlling for the main

effects of HKI and HCBI high or low scores. To plot the

regression lines, an equation was employed which included

terms for the two main effects and the interaction, along

with the corresponding unstandardized regression coeffi-

cients and the y-intercept.

Results

Descriptive and Bivariate Results

Survivors reported a range of health problems, from 0 to 17,

with an average of 5.7 (SD = 3.9). Posttraumatic stress

symptoms, measured 2 months later using the PCL-C, ran-

ged from 17 to 84, with an average of 26.2 (SD = 10.9).

Seventeen survivors (12.1%) had a score of over 40, indi-

cating significant PTSS. In terms of meeting criteria for

symptom clusters based on symptom endorsement, 33

(23.6%) met criteria for re-experiencing, 20 (14.3%) met

criteria for avoidance, 28 (20.0%) met criteria for arousal,

and 14 (10.0%) met criteria for all PTSD symptoms clusters.

As expected, health problems and PTSS were significantly

correlated (r = .44, p \ .001). This strong relationship held

when examining the correlation of PTSS with the separate

problem categories of organic/major (r = .31, p \ .001)

and constitutional/other (r = .48, p \ .001). Posttraumatic

stress symptoms were not correlated with age, age at diag-

nosis, or time off treatment. Scores on HCBI were: health

perceptions (M = 18.0, SD = 4.1, range = 7–24), cogni-

tive competence (M = 15.2, SD = 2.9, range = 6–20),

autonomy (M = 14.0, SD = 2.9, range = 7–20), and sat-

isfaction with health care (M = 17.4, SD = 2.2, range =

12–20).

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Regression and Moderation Results

As shown in Table 1, health problems significantly and

positively related to PTSS in all regressions. Health

Competence Beliefs Inventory health perceptions, cogni-

tive competence, and satisfaction with healthcare also were

significantly and negatively related to PTSS.

The interaction terms for HKI by HCBI (subscales of

health perceptions, cognitive competence, satisfaction with

care) were significant in all regressions except for the one

testing the moderating effect of autonomy (Table 1). Post-

hoc regressions confirmed the significance of the interac-

tion terms as represented by high and low values of the

HCBI scales. In other words, results confirmed that health

perceptions, cognitive competence, and satisfaction with

care (HCBI subscales) influenced the relationship between

health problems (HKI) and PTSS (PCLC) 2 months later.

Figures 1, 2, and 3 show the regression slopes representing

the levels of PTSS that correspond to high and low values

of the health competence beliefs (straight and dotted lines)

and high and low values of reported health problems (left

and right side of x axis). As shown in the figures, the

relationship of health problems and PTSS (as indicated by

highest values of PTSS in the graph) was stronger in the

presence of less adaptive beliefs related to health percep-

tions (Fig. 1), cognitive competence (Fig. 2), and satis-

faction with healthcare (Fig. 3). In other words, having low

health competence beliefs (health perceptions, cognitive

competence, satisfaction with healthcare) increases the

likelihood that high health problems relate to PTSS.

Table 1 Regression analyses

for health problems and health

beliefs predicting PTSS

Regression b df R2 D R2 F p-value

Health perceptions (HP)

Step 1: Main effects 2 .21 .21 17.74 .00

HKI health problems total .31 .00

HCBI–HP -.22 .02

Step 2: Interaction 1 .24 .03 13.94 .00

HKI health problems total .28 .00

HCBI–HP -.19 .04

Health problems 9 HP -.14 .02

Satisfaction with healthcare (SHC)

Step 1: Main effects 2 .23 .23 15.59 .00

HKI health problems total .39 .00

HCBI–SHC -.29 .00

Step 2: Interaction 1 .29 .06 17.67 .00

HKI health problems total .39 .00

HCBI–SHC -.18 .02

Health problems 9 SHC -.25 .00

Cognitive competence (CC)

Step 1: Main effects 2 .27 .27 23.92 .00

HKI health problems total .29 .00

HCBI–CC -.33 .00

Step 2: Interaction 1 .29 .03 18.06 .00

HKI health problems total .25 .00

HCBI–CC -.29 .00

Health problems 9 CC –.17 .03

Autonomy (AU)

Step 1: Main effects 2 .18 .18 13.92 .00

HKI health problems total .42 .00

HCBI–AU .01 .93

Step 2: Interaction 1 .18 .01 9.73 .00

HKI health problems total .42 .00

HCBI–AU .00 .99

Health problems 9 AU .09 .26

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Discussion

This study demonstrated that beliefs affect the nature of the

relationship between health problems and traumatic stress

outcomes in a sample of AYA cancer survivors. Survivors

with more health problems reported increased PTSS, a

finding consistent with previous research in pediatric can-

cer (Gerhardt et al., 2007; Langeveld et al., 2003; Rourke

et al., 2007; Schwartz & Drotar, 2006) and other popula-

tions (Englehard, can de Hout, Weerts, Hox, & can

Doornen, 2009; Lawler et al., 2005; Ouimette et al., 2004;

Stein et al., 2000). The relationship between health prob-

lems and PTSS is complicated and dynamic; it is likely that

PTSS exacerbates health problems and vice versa. How-

ever, the literature supporting increased rates of PTSD/

PTSS in cancer survivors, especially those with late effects,

supports the likelihood that health problems precede PTSS

in cancer survivors (Hobbie et al., 2000; Pelcovitz et al.,

1998; Rourke et al., 2007; Schwartz & Drotar, 2006). The

novelty of the data reported in this paper is that beliefs

about health competence moderated this relationship.

These findings have potential implications for decreasing

traumatic stress in this population and for supporting the

need to attend to psychological variables, in addition to

medical outcomes, when monitoring this medically vul-

nerable group of AYAs (National Cancer Institute and

Livestrong Young Adult Alliance, 2006).

Three of the four subscales (i.e., health perceptions,

satisfaction with healthcare, and cognitive competence) of

the HCBI were significant moderators of the relationship

between health problems and PTSS. Specifically, survivors

who reported greater current health problems were more

17.51

27.65

21.54

23.61

15

20

25

30

35

-1 SD Mean +1 SD

PTSS

Health Problems

Low HCBI Health Perception

High HCBI Health Perception

Fig. 1 Health problems and PTSS as moderated by health perception

24.01

32.54

20.74

23.12

15

20

25

30

35

-1 SD Mean +1 SD

PTSS

Health Problems

Low HCBI Cognitive Competence

High HCBI Cognitive Competence

Fig. 2 Health problems and PTSS as moderated by cognitive

competence

20.37

34.81

21.98

24.47

15

20

25

30

35

40

-1 SD Mean +1 SD

PTSS

Health Problems

Low HCBI Health Care Satisfaction

High HCBI Health Care Satisfaction

Fig. 3 Health problems and PTSS as moderated by health care

satisfaction

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likely to experience PTSS when they felt more vulnerable

to future health problems, less satisfaction with health care,

and more cognitively competent. The association between

PTSS and survivors’ beliefs about their general health and

vulnerability (health perceptions) is logical. These beliefs

may reflect realistic medical problems related to their

treatment and late effects; thus, a sense of vulnerability

may be appropriate. However, it may be possible to modify

such beliefs to reflect more control and competence in

managing the negative health-related beliefs. This is

important because survivors are expected to engage in

ongoing health monitoring, especially in the presence of

current health problems or significant risks. Avoidance or

arousal associated with PTSS may interfere with adherence

to recommended medical monitoring and treatment. For

example, women treated for Hodgkin’s lymphoma during

childhood are at increased risk for breast cancer (up to 20%

will be diagnosed with breast cancer by age 45), yet 63% of

those in their 20s and 30s have not had a screening

mammogram (Oeffinger et al., 2009). Thus, modifying

health perception beliefs may not only be critical for

reducing PTSS, but for also ultimately facilitating recom-

mended medical follow-up care.

Beliefs about satisfaction with healthcare are similarly

relevant targets of intervention. Survivors who feel dis-

satisfied with their care while experiencing many health

problems may be especially vulnerable to distress and may

subsequently disengage from important medical care and

not adhere to provider recommendations (Bell, Kravitz,

Thom, Krupat, & Azari, 2002). Psychosocial barriers to

accessing care are also prevalent in this population

(National Cancer Institute and Livestrong Young Adult

Alliance, 2006), thus potentially exacerbating lack of

engagement with healthcare for those experiencing PTSS.

Therefore, addressing ways to improve satisfaction with,

and engagement with, health care is a critical target of

intervention.

Survivor beliefs about their cognitive abilities also were

related to greater PTSS in the presence of more health

problems. Like health concerns, cognitive concerns are

often justified given that cognitive late effects are among

the most common consequences of cancer treatments that

involve or impact the central nervous system (Mulhern &

Butler, 2004). Such concerns about memory, attention and

performing cognitively may be associated with psycho-

logical factors (Baker, Taylor, & Hermann, 2009). Thus,

negative beliefs about cognitive competence may be

modifiable to improve one’s self-efficacy and skills to

manage daily tasks and related stress. Cognitive-behavioral

approaches have been integrated successfully in remedia-

tion approaches to address beliefs that affect cognitive

abilities in pediatric cancer survivors (Butler et al., 2008).

These approaches may be modified to reduce the risk of

PTSS in this population.

Although pediatric cancer survivors are more likely to

live with their parents than peers and do so longer

(Langeveld et al., 2003), beliefs about autonomy were not

significant moderators of health problems and PTSS. Par-

ents of survivors are more likely to accompany their chil-

dren to healthcare visits than parents of never ill controls

(Ressler, Cash, McNeill, Joy, & Rosoff, 2003). The extent

to which this higher level of parental involvement may be

helpful or constraining for development and wellbeing is

unknown (Banner, Mackie, & Hill, 1996). Given the lack

of support for autonomy as a moderator in this study, these

beliefs seem to be less salient than the other types of beliefs

for understanding PTSS.

The moderating role of beliefs is clinically significant;

modifying beliefs to be more adaptive may mitigate the

association of health problems and PTSS. As shown in

interventions with childhood cancer survivors and their

families, beliefs are important intervention targets that

have led to promising intervention outcomes (Kazak,

Alderfer et al., 2004). Therefore, the HCBI may be useful

for identifying a patient’s maladaptive beliefs to inform

subsequent intervention. Long-term, it may be helpful to

assess health competence beliefs along with PTSS and

health problems as part of the standard of care in survi-

vorship given the prominence of these problems and the

fact that beliefs are amenable to intervention.

Several limitations of this study should be acknowl-

edged. The study focused on survivors of childhood cancer,

and therefore the findings may not generalize to other

populations. However, these findings may be relevant to

other pediatric illness groups that are known to experience

medical trauma (Kazak et al., 2009) and necessitate long-

term medical monitoring. This sample consists of survivors

attending a specialized survivorship clinic and may repre-

sent a group with more medical or psychosocial problems

than others (Ness et al., 2009). Thus, it is unclear if the

findings would generalize to other AYA survivor samples

who may not seek specialized survivorship care or who are

not engaged with the medical system. Replicating the study

in a non-clinic sample may be important given the possi-

bility that those with significant PTSS or maladaptive

beliefs may be less motivated to engage in follow-up care.

Although the range of PTSS varied greatly in the study,

most survivors experienced small to moderate levels of

PTSS. This is consistent with findings that, although most

AYA survivors are psychologically healthy, a small but

significant minority are very distressed (Rourke et al.,

2007; Schwartz & Drotar, 2006). The sample, like many

other childhood cancer survivor samples, is also relatively

homogenous with the majority being non-Hispanic White.

144 J Clin Psychol Med Settings (2012) 19:138–146

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Finally, the data is based on self-report and lacks method

variance.

While the study would benefit from replication in other

cancer survivor and broader samples, the results highlight

potential targets of intervention for those seeking care in

survivorship clinics. Survivors who report PTSS warrant

further clinical and research attention to identify ways to

reduce their distress and potential related impairment.

Intervention with this small but significant minority of

survivors is important given the potential for PTSS to be

persistent in AYAs (Perkonigg et al., 2005) and to impact

health and related behaviors (Clarke & Eiser, 2007; Lee

et al., 2007). Future research should identify those survi-

vors most at risk based on high endorsement of health

problems and PTSS, coupled with maladaptive health

competence beliefs, and explore related intervention

approaches.

Acknowledgments This research was supported by the National

Cancer Institute (CA106928). The authors thank the study partici-

pants. We also thank Claire Carlson, RN, Sue Ogle, CRNP, and

Maureen Reilly, BSN, RN for assisting with recruitment and access to

patients; and Andrew Gaffney, Emily Knudsen-Strong, Muhammad

Monsour, Ifigenia Mougianis, Sonali Sanyal, Mary Caitlin St. Clair,

Mindy Yang, and Lauren Danzi for serving as research assistants.

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