Anxiety during cancer diagnosis: examining the influence of monitoring coping style

and treatment plan

Madelon B. Bronner1, Minh Hao Nguyen1, Ellen M. A. Smets3, Anthony W. H. van de Ven2,
& Julia C. M. van Weert1

1
Amsterdam School of Communication Research / ASCoR, University of Amsterdam
2
Academic Medical Center, Gastro-Intestinal Oncological Center Amsterdam (GIOCA)
3
Academic Medical Center, Department of Medical Psychology, University of Amsterdam

Author Note. Correspondence concerning this article should be addressed to Minh Hao Nguyen,
Amsterdam School of Communication Research, University of Amsterdam, P.O. Box 15791, 1001
NG Amsterdam, The Netherlands. E-mail: [email protected]

This study was funded by the Dutch Cancer Society (KWF). Grant application
numbers UVA 2014-6700 and UVA 2010-4740. KWF was not involved in the study design,
data collection, analysis and writing.

Acknowledgments. We wish to thank all patients and the GIOCA clinic for facilitating the
data collection. Furthermore, we thank Nadine Bol, Eugène Loos, and Kristien Tytgat for
their contributions.

Running head: ANXIETY AND CANCER DIAGNOSIS

cancer;coping;stress;oncology;diagnosis;anxiety;chemotherapy;monitoring;communication

This article has been accepted for publication and undergone full peer review but has not
been through the copyediting, typesetting, pagination and proofreading process which may
lead to differences between this version and the Version of Record. Please cite this article as
doi: 10.1002/pon.4560

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Abstract
Objective: Studies on anxiety within oncology show a high prevalence of anxiety both during
and after the course of the disease. However, little is known about factors that influence the
level of anxiety in the diagnostic phase. This study examines the presence of anxiety during
diagnosis and treatment planning and explores how a monitoring (i.e., information-seeking)
coping style and the suggested treatment plan (i.e., with or without chemotherapy) interact
with anxiety.

Methods: Anxiety scores (STAI-6) were collected from 81 colorectal cancer patients before
and after their visit to the outpatient Gastro-Intestinal Oncological Center Amsterdam
(GIOCA). A cutoff score (>44) was used to indicate highly anxious patients.

Results: More than half (59%) of the patients were classified as highly anxious before
consultation. Although anxiety scores significantly decreased after consultation (t = 3.149, p
= .002), 37% of the patients remained highly anxious. Reductions in anxiety were specifically
observed for patients with a higher monitoring coping style and patients for whom a
treatment plan without chemotherapy was proposed. Interestingly, high monitors for whom
treatment without chemotherapy was proposed showed a major decrease in anxiety, whereas
low monitors for whom treatment starting with chemotherapy was proposed showed a great
increase in anxiety.

Conclusions: The diagnostic phase is associated with high levels of anxiety. Distinct patterns
of anxiety were identified, depending on patients’ coping style and the suggested treatment
plan. Remarkably, patients with a lower monitoring coping style became particularly anxious
when they were advised to start treatment with chemotherapy.

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 Background
‘That moment when the world stops turning’. For most people, the diagnosis of cancer
is a major stressful event associated with anxiety [1]. Studies show a high prevalence of
anxiety during the course of the illness, with 20 to 30% of patients demonstrating clinical
levels of anxiety [2-4]. Longitudinal studies suggest that cancer survivors even have an
increased risk of anxiety disorders for up to 10 years [5]. To date, research has focused
mainly on anxiety during and after cancer treatment; however, less is known about anxiety
during the acute phase of diagnostics and treatment planning, and factors that influence the
level of anxiety in this phase. Yet, awaiting a cancer diagnosis is understandably a
challenging experience. The scarce literature on pre-diagnostic levels of anxiety, mainly in
breast cancer patients, confirms the enormous psychological impact of the diagnostic phase,
with a 33-60% prevalence of potential clinical anxiety [6].
In the diagnostic phase, patients are often overwhelmed and distressed during clinical
consultations; at the same time, they must deal with much new and complex medical
information [7]. Anxiety can interfere with the ability to receive and recall information [8],
which consequently may cause patients to miss important diagnostic and treatment-related
information. However, remembering medical information is crucial for patients to understand
and cope with their diagnosis and to make informed treatment decisions [7, 9, 10]. Well-
informed patients have been shown to be less anxious, to be more satisfied with
consultations, and to have better adherence to treatment regimens [11, 12]. Adequate
information provision by a physician is therefore of the utmost importance. However, not all
patients need the same amount of information.

Stable individual differences have been found in patients’ tendencies to either seek or
avoid threatening medical information [13]. Patients who actively seek information have a
so-called monitoring coping style [14]. High monitors, who tend to focus on threat, generally
know more about their illness and acquire more detailed and voluminous information than
low monitors [14, 15]. Information seems to help high monitors to understand their situation
and to reduce uncertainty. Medical care frequently involves periods of uncertainty [16].
However, when awaiting a cancer diagnosis, the information needed to resolve uncertainty is
not immediately available, and thus this may be particularly anxiety-provoking [17]. In line
with this finding, high monitors seem to experience more anxiety in anticipation of their
genetic test results than low monitors [18, 19].

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 Apart from patients’ coping style, the exact content of the information (‘what has been
told to the patient’) can also affect anxiety levels. Not surprisingly, patients receiving good
news (i.e., a benign diagnosis) showed significant decreases in anxiety, while patients
receiving bad news (i.e., a diagnosis of cancer) had either increased or sustained levels of
anxiety [6]. Since high and low monitors seem to react in different ways when receiving
either good or bad news [20-22], the effect on anxiety might be different for patients with
different informational coping styles. For example, high monitors demonstrated more anxiety
after receiving abnormal results from an ultrasound scan for ovarian cancer than low
monitors [22]. In another study, high monitors scheduled for palliative treatment expressed
more negative emotions and had more concerns about treatment than low monitors scheduled
for palliative treatment. This difference was not found in patients scheduled for curative
treatment [23]. Taken together, high monitors seem to become particularly aroused in the
face of cancer threats, but little is known about the specific patterns of anxiety during the
diagnostic and treatment planning phase, and how these patterns are influenced by patients’
informational coping style and the suggested treatment plan.
The present study aims, first, to gain more insight into anxiety in colorectal cancer
patients during their first outpatient consultation for a final diagnosis and treatment plan.
Second, the course of anxiety within high and low monitors will be investigated. Third, the
course of anxiety for patients who receive a treatment plan that involves chemotherapy
compared to that for patients who receive a treatment plan without chemotherapy is
examined. In colorectal cancer, surgery is the most common treatment [24] and has a curative
intent when the cancer has not spread. Chemotherapy alone or in combination with surgery is
often necessary to treat patients with more advanced disease, as the cancer has penetrated the
bowel wall and reached adjacent structures or spread to other organs [24]. Therefore, the
current study distinguishes between patients with a treatment plan with or without
chemotherapy. Finally, we will explore the course of anxiety in high and low monitors when
different treatment plans are suggested to them.

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 Methods
Procedure and participants
The present study was performed at the Gastro-Intestinal Oncological Center Amsterdam
(GIOCA). The GIOCA clinic, located at the Academic Medical Center (AMC) in
Amsterdam, is a multidisciplinary outpatient clinic that specializes in fast-track diagnosis and
treatment planning within one day [25]. Patients visiting this tertiary referral clinic have
already an initial cancer diagnosis or are already highly suspected to have malignancies.
Intake of referred patients starts in the morning. At noon, a multidisciplinary team formulates
a treatment plan for each patient. In the afternoon, the final diagnosis and proposed treatment
plan is discussed with the patient.
In total, 219 patients visited GIOCA from November 2014 through November 2015.
Of these patients, 180 could be approached for participation (Figure 1). Inclusion criteria
were a) referred for colorectal cancer or colorectal metastases; b) aged 18 years or older; c)
no cognitive impairment (e.g., dementia); d) written informed consent; e) sufficient command
of the Dutch language; and f) access to the Internet. Approximately four days before their
visit to GIOCA, the patients were contacted by telephone and informed about the purpose of
this study (i.e., to gain insight into current information provision at GIOCA). The consenting
patients (n = 91) were sent an online questionnaire to be completed before their GIOCA visit
(T1). At the end of the day, the patients were asked to fill out a second paper-and-pencil
questionnaire (T2). Both the Ethical Review Board of the AMC and the Amsterdam School
of Communication Research (ASCoR) approved the study protocol (reference numbers
W13_053 #13.17.0069 and 2014-CW-110).

Measures
Patient characteristics. Socio-demographic information was collected from the online
questionnaire (T1) and included age, gender, education level, employment status and living
situation. Education level was categorized as low (primary education, lower or middle
general secondary education), middle (higher secondary education, middle vocational
education) and high (higher vocational education, university) education. Employment status
was dichotomized as having paid work (1) vs. no paid work (0). Living situation was
dichotomized as living alone (0) vs. living with other(s) (1).

Anxiety. Anxiety was measured with the short Dutch version of the Spielberger State-Trait
Anxiety Inventory (STAI-6) [26, 27]. Patients were asked to rate the degree to which they

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were currently experiencing anxiety with a 6-item, 4-point scale ranging from 1 (not at all) to
4 (very much so). The items reflect the presence (tense, upset, worried) or the absence (calm,
relaxed, content) of anxiety. The total scores ranged from 6 to 24 and were recoded based on
the guidelines to scores from 20 to 80, with higher scores indicating higher levels of anxiety.
In our study, we used the recognized cutoff of 44 to define a patient as clinically anxious [28,
29]. Cronbach’s α was .82 (T1) and .85 (T2).

Monitoring coping style. Monitoring coping style was measured with a 3-item, 5-point scale
[30-31] adapted from the shortened Threatening Medical Situation Inventory (TMSI) as
validated by Ong and colleagues [32]. Patients’ own medical situation (“Please indicate to
which extent the following statements apply to you since you have been told that you might
be ill”) was followed by three of the original items in the monitoring subscale of the
shortened TMSI, i.e. (a) looking for information within the threatening situation (‘I planned
to ask my health care provider as many questions as possible’); (b) going deeply into the
situation by reading about it (‘I planned to read about my disease’); and (c) getting
information about the situation from other doctors, patients or organisations (‘I decided to
deepen my understanding of the treatment as much as possible’) [32,33]. Statements could be
rated from 1 (not at all applicable to me) to 5 (strongly applicable to me). A total sum score
was calculated and could range from 3 to 15 (M = 10.75, SD = 2.59). A higher score indicates
a higher monitoring coping style. Patients were classified as either high or low monitors on
the basis of the median split (Mdn = 11, IQR = 9-12). Cronbach’s α for the monitoring scale
was .78.

Treatment plan. Medical data were obtained from the electronic medical records of the
patients. Treatment plans involving chemotherapy as the primary treatment were dummy
coded as 1. Any treatment plan without chemotherapy and involving surgery as the primary
treatment was dummy coded as 0.

Statistical Analyses
All analyses were conducted using the Statistical Package for Social Sciences for Windows
22.0 (SPSS, Inc., Chicago, IL, USA). Chi-square and independent samples t-tests were used
to examine differences in gender and age between participants and non-participants. A paired
sample t-test was conducted to evaluate the course of anxiety scores over time. To further
explore the course of anxiety, three mixed (between-within-subjects) ANOVA repeated

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measures analyses were conducted [34]. First, we analysed the course of anxiety before (T1)
and after consultation (T2) by monitoring coping style (higher and lower). Second, we
analysed the course of anxiety by treatment plan (with or without chemotherapy). Finally, we
examined the course of anxiety within high and low monitors when a different treatment plan
was suggested. This resulted in four subgroups (high monitors without chemotherapy, n = 23;
low monitors without chemotherapy, n = 34; high monitors with chemotherapy, n = 12; low
monitors with chemotherapy, n = 12). Bonferroni post hoc comparisons were performed for
all three analyses, both within and between subjects. Partial eta squared (η2) was used to
indicate the effect size, with small (.01), medium (.06) and large (.14) effects [35].

Results

Sample characteristics

In total, 91 patients participated in this study. No significant differences were found between
patients who participated and patients who did not (n = 89) regarding gender (χ2 (1) = 1.779,
p = 0.182) and age (t = 1.444, df = 165.108, p = 0.152). Ten patients were excluded from the
data analysis because of dropouts or incomplete data. This resulted in a final study sample of
81 patients (Table 1). No significant differences were found between patients for whom a
treatment plan was proposed with chemotherapy (n = 24) or without chemotherapy (n = 57)
regarding gender (χ2 (1) = 0.130, p = 0.719), age (t = 0.205, df = 79, p = 0.838), monitoring
coping style (t = 1.245, df = 79, p = 0.217), and anxiety before consultation (t = -1.249, df =
79, p = 0.215).

Anxiety at the point of cancer diagnosis

The average anxiety score before consultation (T1) was 46.30 (SDT1 = 11.29). In total, 59.3%
of the patients (n = 48) met the criteria for clinically high levels of anxiety before
consultation (>44). There was a statistically significant decrease in anxiety scores from T1 to
T2 (MT2 = 41.69, SDT2 = 12.05), t = 3.149, p = 0.002. The mean decrease was 4.61 (95% CI
[1.70, 7.52]). Cohen’s d was 0.40, indicating a small to moderate effect size [35]. After
consultation at GIOCA 37.0% of patients (n = 30) still experienced clinically high levels of
anxiety. The detailed anxiety scores are presented in Table 2.

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The course of anxiety by monitoring coping style
The repeated measures analysis showed a significant interaction effect between monitoring
coping style and time, F (1, 79) = 6.23, p = 0.015, η2 = .07. Post hoc results demonstrated that
anxiety scores decreased significantly for high monitors (Mdif = -8.67, p = 0.000) but not for
low monitors. In addition, there was a marginally significant between-groups difference
before consultation (T1) but not after consultation (T2), indicating that anxiety scores before
consultation were slightly higher for high monitors than for low monitors (Mdif = 4.51, p =
0.075).

The course of anxiety by treatment modality

The repeated measures analysis demonstrated a significant interaction effect between

treatment modality and time, F (1, 79) = 18.44, p = 0.000, η2 = .19. Post hoc analysis
demonstrated that anxiety scores decreased significantly in the group without chemotherapy
(Mdif = -8.30, p = 0.000) but not in the group with chemotherapy. In addition, there was a
significant between-groups difference after consultation (T2) but not before consultation
(T1). Anxiety scores after consultation were significantly higher for the group with
chemotherapy than for the group without chemotherapy (Mdif = 9.05, p = 0.002).

The course of anxiety within subgroups of monitoring and treatment modality

Subsequently, we examined the course of anxiety within the four subgroups. The repeated
measures analysis showed a significant interaction effect between group and time, F (3, 77) =
10.92, p = 0.000, η2 = .30. Post hoc tests demonstrated a significant decrease in anxiety scores
in both high (Mdif = -12.04, p = 0.000) and low (Mdif = -5.79, p = 0.004) monitors for whom a
treatment plan without chemotherapy was suggested. Anxiety scores did not change
significantly in high monitors for whom starting with chemotherapy was suggested.
However, a significant increase in anxiety (Mdif = -10.56, p = 0.002) was found for low
monitors for whom starting with chemotherapy was suggested (Figure 2).

In addition, some between-groups differences appeared at T2. Anxiety scores after

consultation for low monitors for whom starting with chemotherapy was suggested were

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significantly higher than anxiety scores for both lower (Mdif = 11.59, p = 0.019) and high
(Mdif = 13.56, p = 0.007) monitors for whom treatment without chemotherapy was suggested.
Anxiety scores did not differ significantly between low and high monitors for whom
chemotherapy was suggested. At T1, there were no significant differences between the
groups.

Discussion

This study showed that anxiety during the diagnostic and treatment planning phase is
extremely high. Six out of ten patients reported scores that indicate clinical levels of anxiety
before the initial treatment consultation for colorectal cancer. In general, anxiety decreased
after consultation. However, 37% of patients remained highly anxious. Reductions in anxiety
were specifically observed for patients with a higher monitoring coping style and patients for
whom a treatment plan without chemotherapy was proposed. Moreover, the subgroup of high
monitors who were advised to follow a treatment plan without chemotherapy showed the
greatest decrease in anxiety. Anxiety scores did not change for low monitors or for patients
for whom starting with chemotherapy was proposed. More interestingly, in the subgroup of
low monitors for whom starting with chemotherapy was proposed, anxiety scores increased
significantly.

The high levels of anxiety in the acute phase demonstrated in this study are not
unusual. In the scarce literature on pre-diagnostics, 33-60% of patients were classified as
highly anxious [6]. These anxiety levels are higher than those reported during the course of
the illness [2-5], underlining the enormous psychological impact of the phase of diagnostics
and treatment planning. Furthermore, anxiety levels before consultation were higher for
patients with a monitoring coping style. This confirms the findings from the earlier literature
showing that high monitors report higher levels of anxiety than low monitors in anticipation
of their genetic test results [18, 19]. In the period of waiting, when information is not
immediately available, high monitors seem particularly anxious.

Different patterns of anxiety were found in this study. Patients receiving a treatment
plan without chemotherapy (often primary surgery only) showed a greater decline in anxiety
compared to patients for whom starting with chemotherapy was proposed. The current
findings are in line with those of earlier studies demonstrating that anxiety levels differ for

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specific treatments [28, 36]. For example, women with breast cancer who underwent
chemotherapy tended to have higher levels of anxiety than women who underwent surgery or
radiotherapy. Anxiety was particularly high at the commencement of the first dose of
chemotherapy, suggesting that patients have more negative expectations of this treatment
beforehand. Another explanation for this finding can be found in the literature on decision
making about treatment for prostate cancer [37, 38]. These patients believed that surgery was
the best way to cure cancer compared to other forms of treatment. In addition, unlike surgery,
chemotherapy is known for intense and repeated hospital visits, along with many feared side
effects [39]. In sum, patients in this study were most relieved upon hearing that they would
receive treatment without chemotherapy, implying that patients regard such a course of
treatment as more favourable.

The most striking finding of the current study was the interplay between the content of
the provided information (‘what was told to the patient’) and the patients’ coping style on
anxiety. High monitors for whom treatment without chemotherapy was proposed showed a
major decrease in anxiety, whereas low monitors for whom starting with chemotherapy was
proposed showed a great increase in anxiety. In contrast to these findings, earlier research
[20-22] suggests that high monitors become particularly anxious after receiving highly
threatening medical information. These earlier studies, however, were conducted immediately
after cancer screening, when most people do not expect to receive bad news. The current
study is based on patients from a tertiary referral clinic meaning the patients had already an
initial cancer diagnosis or were already highly suspected to have malignancies. In other
words, they had had time to adjust to the idea of having cancer and to anticipate forthcoming
challenges. In high monitors, this had probably led to prior information seeking on treatment
possibilities along with worry about treatment outcomes, as high monitors amplify threat [14,
15]. Given the substantial decrease in anxiety after they received the final diagnosis and
treatment plan, it is likely that high monitors were more relieved upon hearing that surgery
seemed possible. In contrast, low monitors probably avoided searching for stressful medical
information beforehand and preferred to cope with the potential threat by not addressing it
initially. Learning that they had to start with chemotherapy made low monitors feel highly
upset and shocked afterward, probably because they were less likely to anticipate bad news.

Clinical implications
This research points to some fruitful directions for clinical practice. First, many patients are
highly distressed when they enter the consultation room. Physicians should be aware that,

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especially in a phase during which much information must be provided, anxiety can interfere
with the ability to adequately process this information [8]. Second, physicians should take
into account the distressing content of the provided information in combination with a
patient’s coping style. In this study, patients with a lower monitoring coping style became
particularly anxious when they were advised to start with chemotherapy. These patients could
be provided with additional informational sources, such as an audiotape of the consultation or
written information. Such solutions enable the patient to go over the provided information
again when the anxiety has lessened and process it properly [8]. Furthermore, to understand
patients’ coping style, physicians could explicitly ask patients in advance about their
preferences (e.g., Do you generally want to know every detail about your disease? Or do you
wait to see what is going to happen?) [22]. The answer might be a first indication of the
patient’s coping style and will give physicians the opportunity to tailor the manner of
information delivery accordingly.

Study limitations
One of the limitations of this study is the relatively small and heterogeneous sample size.
Although all patients were referred for colorectal malignancy, some came for an early form
of colon cancer, while others were referred for more advanced cancer. In addition, some
patients (n = 18) indicated that their initial diagnosis was not yet discussed by their referring
physician. Post hoc analysis without those patients showed similar patterns of anxiety. Next
to this, the suggested treatment plan also differed widely. For example, within the
chemotherapy group, some patients were suggested neoadjuvant chemotherapy, others
adjuvant chemotherapy, and others palliative chemotherapy. Post hoc analysis without those
patients whose treatment had no curative intent (n = 7), showed similar results, though the
effect sizes were slightly smaller. This finding is consistent with previous research
demonstrating no difference in anxiety between palliative and non-palliative settings [40].
Future research should continue to address the effect of medically relevant variables (e.g.,
stage of cancer diagnosis or type of treatment) on anxiety in a larger group of patients.
Another limitation of this study was the cut-off score (>44) of the STAI-6 for clinical anxiety
[27]. Adequate normative data for cancer patients are lacking on the STAI-6.
Nevertheless, the current study extends the existing literature by providing
information on anxiety in colorectal cancer patients at a unique point in time, underlining the
enormous psychological impact of the diagnostic and treatment planning phase. As this study
is only a first step towards a better understanding of cancer patients’ anxiety patterns during

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the acute phase, future research could extend our knowledge by studying longer longitudinal
analysis of anxiety patterns beyond the day of treatment discussion – including post-
treatment, and by focusing on patient samples that have lengthier timeframes of diagnosis and
treatment planning – which is more common in practice. Furthermore, we encourage future
studies to consider factors that could influence anxiety patterns in cancer patients, such as
communication characteristics (e.g., perceived quality of provider communication and
consultation content). Finally, investigating the implications of the diverse anxiety patterns
for patient-provider interactions, information processing, and the efficacy of support tools
(e.g., preparatory websites) should be a further goal for research in future.

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 Tables

Table 1 Sample characteristics (n = 81)

Age (years), M (SD) 62.5 (9.1)

Gender (male), n (%) 53 (65.4)

Employment status (employed), n (%) 34 (42.0)

Living situation (alone), n (%) 14 (17.3)

Education level

High, n (%) 36 (44.4)

Middle, n (%) 23 (28.4)

Low, n (%) 22 (27.2)

Monitoring coping style

Low monitors, n (%) 46 (56.8)

High monitors, n (%) 35 (43.2)

Treatment plan

No chemotherapy, n (%) 57 (70.4)

Chemotherapy, n (%) 24 (29.6)

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Table 2 Anxiety scores before and after consultation

n T1 T2 Δ

M (SD) 81 46.30 (11.29) 41.69 (12.05) -4.61*

IQR 81 38.33-53.33 33.33-50.00

> cutoff 81 59.3% 37.0%

Monitoring coping style

Low monitors 46 44.35 (11.35) 42.83 (12.25) -1.52

High monitors 35 48.86 (10.86) 40.19 (11.80) -8.67*

Treatment plan

No chemotherapy 57 47.31 (11.26) 39.01 (10.65) -8.30*

Chemotherapy 24 43.89 (11.24) 48.06 (13.00) +4.17

Monitoring coping style and treatment plan

Lower, no chemotherapy 34 45.59 (10.63) 39.80 (10.73) -5.79*

Lower, chemotherapy 12 40.83 (13.04) 51.39 (12.67) +10.56*

Higher, no chemotherapy 23 49.86 (11.91) 37.82 (10.67) -12.04*

Higher, chemotherapy 12 46.94 (8.58) 44.72 (12.98) -2.22

*p < .01 difference over time

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 New appointment
GIOCA
(n = 219)
Not approached (n = 40)
- Unreachable before visit (n = 27)
- Incomplete contact details (n = 12)

Approached
(n = 180)
Not eligible (n = 32)
- No e-mail address or computer (n = 26)
- Insufficient command of Dutch
language (n = 6)

Eligible
(n = 148)
Non-response (n = 57)
- Felt too sick (n = 7)
- Had no time (n = 13)
- Too burdensome (n = 27)
- No specific reason given (n = 10)

Informed consent
(n = 91)

Excluded (n = 10)
- Incomplete data (n = 4)
- Dropped out (n = 6)

Analysis
(n = 81)

Figure 1 Flow diagram of study participation.

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 1

1 High monitors without chemotherapy (n = 23)

2 High monitors with chemotherapy (n = 12)
3 Low monitors without chemotherapy (n = 34)
4 Low monitors with chemotherapy (n = 12)

Figure 2 Anxiety scores (STAI-6) before (1) and after (2) consultation.

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