Psycho-Oncology

Psycho-Oncology (2011)
Published online in Wiley Online Library (wileyonlinelibrary.com). DOI: 10.1002/pon.2070

Review

Fear of cancer recurrence: a systematic literature review

of self-report measures
Belinda Thewes1*, Phillis Butow1, Robert Zachariae2, Soren Christensen2, Sébastien Simard3 and Carolyn Gotay4
1
Centre for Medical Psychology and Evidence-based Decision-making, School of Psychology, University of Sydney, NSW, Australia
2
Psycho-oncological Research Unit, Aarhus University Hospital, Denmark
3
Institut Universitaire de Cardiologie et de Pneumologie de Québec, Laval University, Québec, QC, Canada
4
School of Population and Public Health, University of British Columbia, Vancouver, BC, Canada

*Correspondence to: Abstract

Centre for Medical Psychology
and Evidence-based Decision-
making, School of Psychology,
Brennan McCallum A18,
University of Sydney, NSW 2006,
Australia. E-mail: bthewes@usyd.
edu.au
Received: 28 November 2010
Revised: 16 August 2011
Accepted: 17 August 2011
Background: Prior research has shown that many cancer survivors experience ongoing fears of
cancer recurrence (FCR) and that this chronic uncertainty of health status during and after
cancer treatment can be a significant psychological burden. The field of research on FCR is
an emerging area of investigation in the cancer survivorship literature, and several standardised
instruments for its assessment have been developed.
Aims: This review aims to identify all available FCR-specific questionnaires and subscales
and critically appraise their properties.
Methods: A systematic review was undertaken to identify instruments measuring FCR.
Relevant studies were identified via Medline (1950–2010), CINAHL (1982–2010), PsycINFO
(1967–2010) and AMED (1985–2010) databases, reference lists of articles and reviews, grey
literature databases and consultation with experts in the field. The Medical Outcomes Trust
criteria were used to examine the psychometric properties of the questionnaires.
Results: A total of 20 relevant multi-item measures were identified. The majority of instruments
have demonstrated reliability and preliminary evidence of validity. Relatively few brief measures
(2–10 items) were found to have comprehensive validation and reliability data available. Several
valid and reliable longer measures (>10 items) are available. Three have developed short forms
that may prove useful as screening tools.
Conclusions: This analysis indicated that further refinement and validation of existing
instruments is required. Valid and reliable instruments are needed for both research and
clinical care.
Copyright © 2011 John Wiley & Sons, Ltd.
Keywords: fear of recurrence; cancer; oncology; self-report measures; questionnaires

Introduction concern reported by subjects about the chances of can-

Growing numbers of cancer survivors mean that long-
term survivorship issues are receiving increasing
attention in the psychosocial literature. Fear of cancer
recurrence (FCR) is amongst the most commonly
reported problems by patients with breast, colorectal,
lung and prostate cancer [1] and is the most prevalent
unmet psychosocial need for help amongst cancer
survivors, with 24–40% of cancer survivors reporting
moderate to high levels of need for help with FCR [2–5].
Yet, few existing psychological or quality-of-life (QoL)
measures commonly used with cancer populations
include items assessing FCR. Only relatively recently
have efforts been made to better understand this
phenomenon and help patients to cope with FCR [6].
Although there is no widely accepted definition of
FCR, two main definitions have been used. The first,
defined as the ‘fear that cancer could return or progress
in the same place or in another part of the body’ [7],
adopts a patient’s perspective of FCR and is relevant
across the cancer trajectory. The second, ‘the degree of
cer returning at a future time’, emphasises recurrence
more than progression [8,9]. This lack of definitional con-
sensus and resulting differences in items included in mea-
sures may partly explain the variability in reported
prevalence rates of FCR, which range from 5% to 89%
[10]. Thus, the lack of consensus on definition, a gold-
standard FCR measurement tool and established cut-off
scores for clinically significant FCR all hinder studies
about this phenomenon.
This review aims to systematically identify all current
multi-item self-report questionnaires and subscales that
measure FCR or fear of cancer progression in people
with a history of cancer and to critically appraise their
properties and scope to help clinicians and researchers
select the most appropriate assessment tool(s).
Methods
In October 2008 and January 2010, we conducted a
systematic search of the electronic bibliographic

Copyright © 2011 John Wiley & Sons, Ltd.


databases Medline (1950–2010), PreMedline, CINAHL
(1982–2010), AMED (1985–2010) and PsycINFO
(1967–2010). Multiple search terms associated with
FCR [fear or concern(s) combined with recurrence
or relapse] were combined with search terms for
instruments [measurement tool(s), measurement scale(s),
psychological test(s), questionnaire(s)] and search terms
for cancer [cancer, neoplasms]. To be selected for further
review, manuscripts needed to (i) describe an FCR
assessment instrument and (ii) include data on the
reliability and/or the validity of the measure. The initial
search was restricted to English language manuscripts
published in peer-reviewed publications. Subscales were
included only if their items measured FCR exclusively.
Manuscripts were excluded if they were commentaries,
case reports or described studies that involved fewer
than 25 subjects. Questionnaires and subscales designed
to measure fear of developing cancer in unaffected
populations were also excluded. Electronic database
searches were supplemented with additional strategies
including (i) review of reference lists of identified manu-
scripts, (ii) searches of grey literature (www.google.com)
and (iii) consultations with experts in the field.
Abstracts were retrieved and screened for relevance to
the research question, by the first author (B. T.), and all
relevant articles retrieved. Where relevant references
did not include sufficient information about the
instrument, efforts were made to contact the author to
obtain a full copy of the measurement instrument and/
or additional pertinent information. Finally, assessment
tools were compared and critically appraised regarding
(i) the number of items and structure, (ii) intended
population, (iii) response time frame and format, (iv)
development method, (v) theoretical framework and
(vi) evidence of psychometric properties.
Results
Of the 187 abstracts identified in an initial search, 70
were excluded because they were irrelevant to the aims
of the study or did not meet other inclusion criteria. A
further 81 manuscripts were excluded because they used
measures not specific to FCR and/or did not report
psychometric data. Included in the latter were seven
single-item measures (Appendix A). Thirty-six manu-
scripts meeting all inclusion criteria were retained.
These manuscripts described 20 unique multi-item FCR
assessment tools.
FCR subscales
As seen in Table 1, six of the identified FCR measures
were subscales of more comprehensive QoL or psycho-
social assessment instruments.
Fear of Recurrence Subscale (FRS) [11]
This 3-item subscale assesses FCR within a 13-item
scale assessing attitudes to routine surgical follow-up
appointments amongst patients with mixed cancers.
Copyright © 2011 John Wiley & Sons, Ltd.
B. Thewes et al.
Items assess insecurity about health, frequency of
FCR and belief in complete cure. No information is
available about the method by which the FRS was
developed. Internal consistency was adequate. To
date, the validity has not been evaluated.
European Organization for Research and Treatment of
Cancer Recurrence Subscale (EORTC-RS) [12]
The three-item EORTC-RS was developed as an adjunct
subscale for a multidimensional QoL instrument to
assess surgical outcomes for early-stage breast cancer
patients. Items assess the degree of bother caused by
FCR, belief in cure and unease about the future. Items
were derived from items developed by Avery et al. [13].
The subscale was validated in a sample of 278 women
with breast cancer. Internal consistency and item–scale
correlations suggest adequate reliability [12]. Multi-trait
scaling analysis verified the hypothesised structure, and
the subscale showed low to moderate correlations with
other domains, including body image, satisfaction with
treatment and cosmetic result (r < 0.4). A moderate
positive correlation between the EORTC-RS and the
Distress-Recurrence Subscale of the Quality of Life in
Adult Cancer Survivors Scale (DRS-QLACS) [14]
provides preliminary evidence of convergent validity [12].
Concern About Recurrence Subscale of the Collaborative
Ocular Melanoma Study—Quality of Life Scale (CRS
COMS-QoLS) [15]
This three-item subscale was developed to supplement
an existing QoL questionnaire used specifically with
ocular melanoma. Items assess frequency of FCR,
degree of distress caused by FCR and perceived risk
of recurrence. Items were developed by a panel of
experts on the basis of a literature review and patient
interviews and were pilot tested in ocular melanoma
patients (n = 842) [15]. Internal consistency and the
item–scale correlations suggest adequate reliability.
The authors claim that discriminant validity and diver-
gent validity were demonstrated by low to moderate
correlations with other psychological variables: Hospi-
tal Anxiety and Depression Scale (HADS) [16]
(r = 0.42) and Mental Health subscale (MHI-5) of the
SF-36 [16] (r = 0.31). In contrast, other studies explor-
ing FCR instruments have used moderate associations
with scales assessing psychological variables as evi-
dence of convergent validity.
Fear of Recurrence Subscale of the Memorial Anxiety
Scale for Prostate Cancer (MAX-PC-FRS) [17,18]
This four-item subscale assesses FCR over the past
week within a scale measuring prostate cancer-specific
anxiety. Items assess agreement with statements about
the impact of FCR on planning for the future, enjoyment
of life, worry about cancer getting worse and general
nervousness. The MAX-PC-FRS incorporates some
items modified from the FRS developed by Kornblith
et al. [19] and has been validated in two large studies
Psycho-Oncology (2011)
DOI: 10.1002/pon
 Table 1. FCR subscales
Intended/ External
Name of No. of Response suitable Validation Item Internal validity
Author scale items format population Country sample(s) development Item domains Time frame Reliability validity assessed assessed Comments

Kiebert Fear of 3 Likert scale Mixed Netherlands 107 Purposely ▪Insecurity about None Internal No No
et al. [11] Recurrence 0 (not at all) outpatient designed by health consistency
Subscale to 3 (very much). cancer authors. ▪Frequency of FCR (a = 0.77)
(FRS) Higher scores survivors at ▪Belief in cure
indicate oncology
higher FCR. follow-up visits
Curran European 3 Likert scale Breast cancer International 178 breast Purposely ▪Frequency of None Internal Yes Yes
et al. [12] Organization for 1 (all of the patients cancer designed by FCR consistency (one study) (one study)

Copyright © 2011 John Wiley & Sons, Ltd.

Research time) to 5 Suitable for survivors 25– author, ▪Health worry (a = 0.73)
and Treatment (none of the heterogeneous 36 months content ▪Belief in cure Item–scale
of Cancer time). Lower cancers after surgical derived total
Recurrence scores trial entry mainly from correlations
Subscale indicate Avery (all items r ≥ 0.4)
(EORTC-RS) higher FCR. et al. [13].
Melia et al. Concern About 3 Interview rating Ocular melanoma USA and 842 patients Designed by ▪Frequency of None Internal Yes Yes
[15] Recurrence scale from Canada with ocular panel of FCR consistency (one study) (one study)
Subscale of the 0 to 100. choroidal experts. ▪Degree of (a = 0.80)
Collaborative Lower scores melanoma Based on distress Item–scale
Ocular indicate higher clinical total
A systematic review of fear of recurrence measures

▪Perceived risk
Melanoma FCR. expertise and correlations
Study—Quality patient (all items
of Life Scale interviews. r > 0.63)
(CRS COMS-
QoLS)
Roth et al. Fear of 4 Likert scale 0 Prostate USA 385 prostate Designed by ▪Impact on Past week Internal Yes Yes
[17,18] Recurrence (strongly agree) cancer patients panel of planning for future consistency (two studies) (two studies)
Subscale of to 3 (strongly [17] experts. ▪Impact on (a = 0.82–0.85)
the Memorial disagree). Scores 367 prostate Included enjoyment of life Item total
Anxiety Scale reversed. Higher cancer patients items ▪Worry about correlations
for Prostate scores indicate [18] modified from cancer getting (r = 0.59–0.73)
Cancer (MAX- higher FCR. the scale worse Test–retest
PC) developed by ▪General r = 0.98
Kornblith et al. [19]. nervousness (10-day interval)
Avis et al. Distress- 4 Likert scale Long-term USA 242 long- Patient ▪Worry about death Past month Internal Yes Yes Participants for
[14] Recurrence 1 (never) to cancer term survivors interviews. ▪Worry about consistency (one study) (one study) both initial item
Subscale of 7 (always). survivors from US recurrence (a = 0.86) development
the Quality of Higher advocacy ▪FCR triggered and validation
Life in Adult scores networks by pain studies drawn
Cancer indicate ▪Preoccupation with from members
Survivors higher FCR. FCR of a survivor’s
Scale advocacy
(DRS-QLACS) network.

DOI: 10.1002/pon
Psycho-Oncology (2011)
 B. Thewes et al.

Validity of FRS-
Comments
[17,18] of prostate cancer patients with early and

subscale not
examined in
advanced disease. The subscale has been shown to be

depth.
CPILS
internally consistent and has high test–retest reliability
over 2 weeks. The scale structure of the MAX-PC was
determined by exploratory factor analysis in a study of
External

(one study)
assessed
validity

385 men with prostate cancer [17] and replicated in a

confirmatory factor analysis in a second sample of 367
Yes

patients [18]. Convergent validity has been established

validity assessed

with the HADS Anxiety (r = 0.50; r = 0.44), HADS

Internal

Depression (r = 0.43; r = 0.41), HADS Total (r = 0.53;

(one study)

r = 0.48) and Distress Thermometer [20] (r = 0.37;

r = 0.56) [17,18]. Negative correlations with overall
Yes

QoL measured by the FACT-P [21] provide some

evidence of discriminant validity (r = 0.40; r = 0.43).
Reliability

consistency
(a = 0.84)
Internal

Distress-Recurrence Subscale of the Quality of Life in

Adult Cancer Survivors Scale (DRS-QLACS) [14]
Time frame

This 4-item subscale assesses FCR over the past month

within a 47-item QoL measure for long-term cancer
None

survivors. Items assess worry about death, worry about

recurrence, FCR triggered by pain and preoccupation
about FCR. Items were developed on the basis of
Item domains

▪Degree of FCR
▪Concern about

▪Fear about the

▪Preoccupation

interviews with members of a survivor advocacy

with illness

network, and the scale was validated in patients with

relapse

heterogeneous tumours drawn from the same popula-

future

tion (n = 242). The scale structure was determined

firstly by exploratory factor analysis performed
development

separately for the generic and cancer-specific items.

patients [23].
and surveys
Item

Secondly, the four items that explained most of the

interviews

of BMT
Patient

variance in the criterion measure for each factor were

selected. Finally, the results of the factor analysis and
criterion-based approach were compared to select the
survivors [22]
Validation
sample(s)

final set of items, which explained 4.5% of the total

patients [23]
5155 cancer

transplant
99 bone
marrow

variance in QoL scores. The subscale has satisfactory

(BMT)

internal consistency. Convergent validity was demon-

strated by a significant negative correlation with the
EORTC-RS [12] (r = 0.67) and a visual analogue
Country

scale rating of global QoL (r = 0.23). No information

USA

is available about the discriminant validity of this

subscale.
population
Intended/

Mixed cancers
suitable

Fear of Recurrence Subscale of the Cancer Problems in

Living Scale (FRS-CPILS) [22]
This 4-item subscale forms part of the 29-item Cancer
problem). Higher
Response

Problems in Living Scale (CPILS). Items assess the

format

higher FCR.
problem) to
Likert scale

degree of fear about recurrence, concern about relapse,

2 (severe
0 (not a

indicate
scores

preoccupation with illness and fear about the future.

The original CPILS was developed on the basis of
No. of

interviews and surveys of bone marrow transplant

items

(BMT) survivors and validated in a sample of BMT

survivors [23]. The results of a large and recent valida-
tion study with mixed cancer survivors (n = 5155) sug-
Name of

(FRS-CPILS)
Problems in
Recurrence

Living Scale
Subscale of
the Cancer
scale
Table 1. Continued

gest adequate internal consistency. The authors report

Fear of

that the convergent validity of the FRS-CPILS was not

fully evaluated because they found no well-established
scales of FCR with which to compare the FRS-CPILS.
Zhao et al.
Author

Low partial correlations (with individual scales control-

[22]

ling for the other scales) were reported with other

Copyright © 2011 John Wiley & Sons, Ltd. Psycho-Oncology (2011)

DOI: 10.1002/pon
A systematic review of fear of recurrence measures
psychological scales including the SF-36 mental health
composite score [16] (r = 0.11), the Profile of Mood
States (POMS) Total [24] (r = 0.10) and the Rotterdam
Symptom Checklist—Modified (r = 0.12) [25], suggest-
ing discriminant validity.
Brief FCR questionnaires (2–10 items)
Depending on study aims, methods and available
resources, brief questionnaires may be a preferred option
for researchers. We operationally defined brief question-
naires as those containing ten or fewer items and identi-
fied such FCR questionnaires, which are described in
detail in succeeding sections and summarised in Table 2.
Cancer Worry Scale (A) (CWS-A) [26]
This questionnaire includes three items assessing degree
of distress caused by the possibility of cancer, degree of
intrusiveness of thoughts about cancer and frequency of
thoughts about cancer. The CWS-A was designed to test
hypotheses about the application of the Self-Regulation
Theory to cancer worry in a study of 51 breast cancer
patients and 81 healthy controls [26]; psychometric
properties were not assessed. A slightly modified version
was later developed by Cameron et al. [27] and used in a
randomised controlled trial of tamoxifen for breast can-
cer survivors. In this study, the scale’s internal consis-
tency was found to be adequate, and evidence of
convergent validity was established by significant positive
correlations with trait anxiety (r = 0.36) as assessed by the
Multiple Affect Check List [28]. Construct and discrimi-
nant validity of this scale have not been established.
Lasry and Margolese Fear of Recurrence Index
(LMFRI) [29]
This three-item scale assesses concern about recurrence
amongst breast cancer patients participating in a
randomised trial of lumpectomy versus mastectomy.
Two items assess respondents’ concern about recur-
rence and perceptions of their partner/carer’s level of
concern about recurrence. No information is available
about the scale’s development and the construct validity.
The inter-item correlation of the scale is high (r = 0.92).
The item wording is generic and suitable for surgical
patients with mixed tumours. It has been used in several
subsequent studies [30,31]. Despite its popularity, there
are no further published data on this measure’s psycho-
metric properties.
Fear of Relapse/Recurrence Scale (FRRS) [19]
To date, this questionnaire is the most extensively
validated brief measure of FCR. Although developed
for leukaemia patients, it is suitable for patients with
other cancer types. It includes five items measuring
inability to plan for the future because of FCR, per-
ceived risk of recurrence, impact of FCR, degree of
FCR and belief in cure. No information is available
about item development, construct validity or stability.
Copyright © 2011 John Wiley & Sons, Ltd.
Psychometric properties have been explored in five
studies with patients with childhood [32] and adult leu-
kaemia [19]. Reported internal consistency ranges from
just below acceptable levels [32] to acceptable [33].
Evidence of convergent validity is demonstrated by
positive correlations with negative emotional states
including Depression (r = 0.24), the Paranoid Ideation
subscales (r = 0.19) and total score (r = 0.36) of the
Brief Symptom Inventory [34]; the Body Image
subscale (r = 0.31) of the Derogatis Sexual Functioning
Inventory [35]; total score (r = 0.33) of the Psycho-
social Adjustment to Illness [36] and unmet needs
(r = 0.42 to 0.62) [19,32,33]. Negative correlations
have been reported between FRRS scores and global
QoL (r = 0.43 to 0.63) and emotional functioning
(r = 0.38 to 0.59), providing preliminary evidence
of discriminant validity [33]. Evidence of sensitivity
to change was found in a study of prostate cancer
patients [37] who had significantly reduced post-
treatment FRRS scores at 6–12 months.
Fear of Recurrence Scale (A) (FRSa) [38]
This four-item questionnaire was adapted from the Fear
of Developing Ovarian Cancer Questionnaire [39],
developed for women at high risk of hereditary breast
and ovarian cancer. The items assess frequency of worry
about breast cancer recurrence and emotional and
functional impact of FCR over the past month. Internal
consistency was high at 3 weeks prior to and 1 month
and 3 months after chemotherapy completion in a longi-
tudinal study of 69 breast cancer patients [38]. Test–
retest reliability was moderate across intervals of 7 to
8 weeks, perhaps indicating some sensitivity to change
given the duration of the retest interval. Information about
item development and validity has not been published.
Cancer-related Worries Scale (CRWS) [40]
This four-item questionnaire includes items assessing
the degree of concern that physical symptoms indicate
recurrence, worry about future tests, worry about recur-
rence and worry about developing another type of
cancer. Internal consistency was adequate in a study
of 321 long-term cancer survivors [40]. The authors
reported that a factor analysis indicated that the CRWS
was a distinct factor from anxiety and depression, but
no further details of the analysis were reported.
Assessment of Survivor Concerns Scale (ASCS) [41]
This five-item scale was designed to measure issues not
covered in generic QoL instruments that are pertinent to
cancer survivors on the basis of patient interviews.
The scale has two subscales: a three-item cancer-
specific worry (CW) subscale measuring worry about a
recurrence, new diagnosis and diagnostic tests, and a
two-item general health worry (HW) subscale measuring
worry about death and health over the past week. Internal
consistency was high for the CW subscale and acceptable
for the HW subscale [41]. Construct validity was
Psycho-Oncology (2011)
DOI: 10.1002/pon
 Table 2. Brief FCR questionnaires (2–10 items)
Intended/ Internal External
No. of Response suitable Validation Item validity validity
Author Name of scale items format population Country sample(s) development Item domains Time frame Reliability assessed assessed Comments

Easterling and Cancer Worry Scale 3 Likert scale Breast/ USA 54 breast Purposely •Frequency Past Internal No Yes Items employ
Leventhal [26] (A) (CWS-A) 0 (not at all) healthy patients and designed by FCR month consistency (one study) a variety of
to 10 (a great controls 81 healthy authors. Based •Intrusions (a = 0.81) response
deal) for the Suitable for controls [26] on theoretical •Distress caused formats.
first two items, patients with 140 post- framework. by FCR
and 0 (none of mixed menopausal
the time) to 4 (all cancer breast cancer
of the time) for the patients in

Copyright © 2011 John Wiley & Sons, Ltd.

last item. Higher tamoxifen
scores indicate trial [27]
higher FCR.
Lasry and Fear of Recurrence 2 Likert scale 1 (very Breast cancer Canada 123 breast Purposely •Patient’s FCR None Inter-item No No
Margolese [29] Index (FRI) much) to 4 (not Suitable for cancer designed by •Carer/family’s correlation
at all). Reverse mixed patients post authors. FCR (r = 0.68)
scored. Higher cancers surgery [29] •Worry about
scores indicate health
higher FCR.
Greenberg Fear of 5 Likert scale 1 Leukaemia USA 203 survivors Purposely ▪Inability to Past week Internal No Yes
et al. [19] Relapse/Recurrence (strongly agree) patients of adult acute designed by plan for future consistency (three
Scale (FRRS) to 5 (strongly Suitable for leukaemia [19] one author ▪Perceived risk (five studies) studies)
disagree). patients 110 childhood (ABK) [19]. of recurrence (a = 0.69–
Final item with mixed leukaemia ▪Impact of FCR 0.83)
is reverse cancers survivors [32] ▪Fear of
scored. Higher 519 prostate recurrence
scores indicate cancer patients ▪Belief in cure
higher FCR. [37]
252 breast and
endometrial cancer
survivors [79]
42 advance and
58 early-stage
ovarian cancer
survivors [33]
Rabin Fear of 4 Likert scale 1 Breast USA 69 breast cancer Modification of •Frequency Past Internal No No
et al. [38] Recurrence Scale (rarely or never) cancer patients Fears of of FCR month consistency
(A) (FRSa) to 4 (all the patients Developing •Emotional (a = 0.82–
time) or (very Ovarian Cancer impact 0.84)
concerned). Scale [39] •Functional Test–retest
Higher scores impact (r = 0.50–
indicate higher •Concern about 0.62)
FCR. FCR
B. Thewes et al.

Psycho-Oncology (2011)
DOI: 10.1002/pon
 Deimling Cancer-related Worries 4 Likert scale Mixed USA 321 long-term Purposely ▪Concern about Not Internal Yes No
et al. [40] Scale (CRWS) 1 (strongly cancers cancer survivors designed on recurrence stated consistency (one study)
agree) to 5 the basis of an ▪Worry about (a = 0.84)
(strongly unpublished future tests
disagree). questionnaire ▪Worry about
Items reverse developed by recurrence
scored. Higher Gotay and ▪Worry about
scores indicate Muraoaka other forms
higher FCR. (unpublished). of cancer
Gotay and Assessment of Survivor 5 Likert scale Mixed USA 592 short-term Purposely Two subscales Past Internal Yes Yes Specifically
Pagano [41] Concerns (ASC) 1 (not at all) cancers survivors designed by Cancer worry week consistency (one (one designed to
to 4 (very 161 long-term authors on ▪Recurrence Cancer study) study) measure fears
much). Higher survivors the basis of ▪New diagnosis worry about

Copyright © 2011 John Wiley & Sons, Ltd.

scores indicate identified their previous ▪Future tests (a = 0.93) recurrence and
higher FCR. through research Health worry Health health in cancer
population with survivors. ▪Death worry survivors (mixed
cancer ▪General health (a = 0.72) diagnoses).
registry
Cameron Cancer Worry Scale (B) 2 Likert scale Breast cancer USA 154 breast Purposely ▪Worry about None Inter-item No No
et al. [43] (CWS-B) 0 (not at all) cancer designed by breast cancer correlation
to 10 patients authors on the recurrence (r = 0.86)
(extremely). basis of the ▪Concern about
Higher scores cancer worry breast cancer
indicate higher scale developed recurrence
A systematic review of fear of recurrence measures

FCR. for unaffected

women at high
risk of developing
cancer [44].
Diefenbach [45] Worry About Prostate 2 Likert scale Prostate cancer USA 391 prostate Purposely ▪Worry about Not Inter-item No Yes
Cancer Scale (WPCS) 1 (not at all) cancer designed. recurrence reported correlation (one study)
to 5 (very patients Adapted from ▪Worry about (r = 0.82)
much). items from cancer spread
Higher previous studies
scores assessing cancer
indicate worry amongst
higher men with
FCR. prostate cancer
[47] and women
at risk of breast
cancer [46].
Hodges and Worry of Cancer 2 Likert scale Head and United Kingdom 101 head Modified items •Frequency Past Internal No Yes
Humphris [8] Scale—Revised 0 (not at all) neck cancer and neck from the CWS •Degree of month consistency (one study)
(WOC-R) to 10 (a great Patients and cancer by Easterling and intrusiveness (a = 0.85 at
deal) for the carer version patients and Leventhal [26]. of FCR 3 months)
first item and 101 carers at Based on (a = 0.90 at
0 (none of the 3 and 6 6 months)

DOI: 10.1002/pon
Psycho-Oncology (2011)
 B. Thewes et al.

supported by confirmatory factor analysis with 592 short-

Comments
term and 161 long-term cancer survivors and supported
the hypothesised factor structure of the scale. Convergent
and discriminant validity were supported by positive
correlations with negative affect (HW: r = 0.43; CW:
External

assessed
validity

r = 0.34) and weak correlations with positive affect

(HW: r = 0.02; CW: r = 0.11) on the Positive and Nega-
No
tive Affect Schedule [49] and by positive correlations
assessed
Internal

with depression measured by the Center for Epidemiologic

validity

Studies Depression Scale [42] (HW: r = 0.39; CW:

No

r = 0.19). No data are available on the stability and sensitiv-

Reliability

consistency

ity of this scale.

(a = 0.66)
Internal

Cancer Worry Scale (B) (CWS-B) [43]

This two-item adapted version of the CWS-A was
Time frame

developed and based on a scale originally modified

reported

by Cameron and Diefenbach [44] to assess worry

Not

about developing breast cancer in women with high

genetic risk. Items assess amount of worry and con-
Item domains

cern about breast cancer recurrence. In relation to re-

▪Frequency

liability, only the inter-item correlation of the scale

▪Belief in

▪Fear of

was reported (r = 0.86) in a study of a psychosocial sup-

death
cure

port programme for women recently diagnosed with

breast cancer [43]. Other psychometric properties have
development

designed items

Bartelink et al.
adapted from

not been examined.

Item

framework.
theoretical

et al. [50].
Purposely

[49] and
de Haes

Worry About Prostate Cancer Scale (WPCS) [45]

This two-item scale was developed to examine FCR in
Validation
sample(s)

localised prostate cancer patients. Items adapted from

1–28 months
months post

oesophageal

two previous studies [46,47] assess the degree of worry

patients at

discharge
diagnosis

about prostate cancer recurrence and worry about

cancer

post
176

prostate cancer spread. The inter-item correlation was

acceptable (r = 0.82) [45]. In a study of 391 prostate can-
Netherlands
Country

cer patients, WPCS scores 6 months post diagnosis

were positively associated with higher Gleason scores1
(r = 0.20) and negatively associated with overall QoL
(r = 0.23) and emotional QoL (r = 0.46) at 12 months
population
Intended/
suitable

post diagnosis. No additional data are available on the

Suitable for

Suitable for
Esophageal

patients
cancers

cancers

development and psychometric properties of this measure.

cancer
mixed

mixed

Worry of Cancer Scale—Revised (WOC-R) [8]

reverse scored.
of the time) for

(very often/very
indicate higher

indicate higher
Response

Higher scores

Higher scores
time) to 4 (all

Likert scale 1

strongly) to 5
the last item.
format

never). Items

This two-item modified version of the CWS-A devel-

(not at all or
much/very

oped for use with cancer survivors and their caregivers

FCR.

FCR.

assesses the degree of intrusiveness of worry about

FCR into thoughts and activity, and frequency of
No. of
items

FCR. Internal consistency was high in a recent study

3

of survivors and caregivers [8]. Preliminary evidence

of convergent validity was provided by positive corre-
Name of scale

lations between FCR and anxiety and depression

Fear of Recurrence
Scale (B) (FRSb)

(assessed by the HADS) at each assessment for patients

(3 months: r = 0.36; 6 months: r = 0.41) and carers
(3 months: r = 0.61; 6 months: r = 0.73) [8]. No further
Table 2. Continued

information is available about the psychometric proper-

ties of the WOC-R.
Fear of Recurrence Scale (B) (FRSb) [48]
et al. [48]
Author

Franssen

This three-item measure was based on items originally

developed by Bartelink and van Dam [49] and de Haes

Copyright © 2011 John Wiley & Sons, Ltd. Psycho-Oncology (2011)

DOI: 10.1002/pon
A systematic review of fear of recurrence measures
and van Oostrom [50]. Items survey frequency of FCR,
belief in cure and fear of death. Internal consistency
was below acceptable levels in a study of esophageal
cancer patients [48]. No further information is available
on the psychometric properties of this scale or item
development.
Longer FCR questionnaires (10+ items)
Where FCR is the focus of research and multi-
dimensional information about the nature of FCR is
required, longer scales may be the most appropriate
choice. Our literature search revealed four instru-
ments assessing FCR with more than 10 items, as
discussed in succeeding sections and summarised in
Table 3.
Fear of Recurrence Questionnaire (FRQ) [9]
Developed in 1981, the FRQ was the first FCR-specific
measure reported in the literature. This 22-item measure
was developed for breast cancer patients but is also suit-
able for use with mixed cancer patients and caregivers.
Items assess presence and degree of health worry, uncer-
tainty, triggers for FCR, concerns of significant others,
degree of impact of FCR on the future and attitudes toward
future. The scale’s factor structure has not yet been empir-
ically examined. Items were developed by the author, and
face validity was confirmed by review by a panel of three
experts [9]. The scale has good internal consistency with
both patients [51,52] and caregivers [52]. There is some
evidence of convergent validity with the POMS
(r = 0.47) [53], and a six-item short version of the FRQ
has shown convergent validity with the POMS Distress
subscale (r = 0.51 to 0.60) [54] in a sample of 70 women
with early breast cancer. No further information is avail-
able about the psychometric properties of the FRQ short
form.
Concerns About Recurrence Scale (CARS) [7]
This 30-item breast cancer-specific measure was based
on Lazarus and Folkman’s transactional model of stress
and coping model [55], a review of the literature and
pilot study interviews with breast cancer patients. The
CARS is divided into two sections. The first evaluates
overall FCR with four questions (i.e. frequency, dis-
tress, duration and severity). The second section
assesses the nature of women’s fears and concerns
about breast cancer recurrence with 26 items in four
domains: health worries (11 items), womanhood
worries (7 items), role worries (6 items) and death
worries (2 items). The summated scale score accounted
for 70% of the variance in scores in an exploratory fac-
tor analysis. English and Dutch versions are available.
Unlike many other FCR measures, the items on the
womanhood domain tap constructs such as fears about
the impact of recurrence on body image, femininity and
sexuality, which may be particularly relevant to women
with cancer. The psychometric properties of the
Copyright © 2011 John Wiley & Sons, Ltd.
CARS—English version have been explored in one
study [7], and a further study has validated the Dutch
version [56]. Both versions have been found to be inter-
nally consistent for each subscale [7], and the Dutch
version has been reported to have good test–retest
reliability over 2 weeks [56]. Moderate correlations
between CARS subscales and the Intrusive Thoughts
(r = 0.43–0.64) and Avoidance (r = 0.41–0.50) subscales
of the Impact of Event Scale (IES) [57], and the Distress
(r = 0.38–0.54) and Well-Being (r = 0.43 and –0.62)
subscales of the Mental Health Inventory (MHI) [58]
provide some indication of convergent validity.
Discriminant validity and sensitivity to change have
not been investigated.
Fear of Progression Questionnaire (FoP-Q) [59]
This 43-item scale measures fear of progression of
illness in patients with chronic illnesses (e.g. cancer,
diabetes mellitus and rheumatic illnesses) who have
recurrent disease, are disease free or are undergoing
treatment. Item choice was guided by a literature
review, patient interviews [60] and the Diagnostic and
Statistical Manual of Mental Disorders (DSM-IV)
[61]. Respondents indicated the extent to which a
variety of illness-related statements apply to them.
Exploratory factor analysis revealed five factors
including affective reactions, partnership/family issues,
occupation, loss of autonomy and coping with anxiety
accounting for 50% of the variance in scores. The FoP-Q
was originally validated in a German sample of 439
patients with chronic illness [59], including patients with
mixed cancer types (n = 152), diabetes mellitus (n = 150)
and rheumatic disease (n = 137). Psychometric properties
were adequate in the total sample, but a separate analysis
was not conducted for cancer patients. Subscales were
internally consistent. Test–retest reliability was high
amongst a subsample (n = 69) over 7 days. Face validity
was assessed in each diagnostic group, with 96% of
cancer patients indicating that the items captured issues
relevant to their concerns. Convergent validity has
been established by expected associations between
the FoP-Q scores and the HADS Anxiety subscale
(r = 0.66), HADS Depression subscale (r = 0.57), Symp-
tom Checklist 90 (SCL-90) [62], Anxiety (r = 0.59) and
Phobic Anxiety subscales (r = 0.51) and the Physical
(r = 0.38) and Mental (r = 0.59) subscales of the SF-
12 Health Survey [63]. Results showed that increased
FoP-Q scores were significantly associated with longer
duration of illness, greater duration of sick leave and
more frequent physician visits, suggesting discriminant
validity. Sensitivity to change was supported by the results
of a randomised controlled trial aimed at reducing
dysfunctional fear of progression [64,65]. The original
German version has been forward–backward translated
into English and Korean [66], but neither translation has
been comprehensively validated. A 12-item short form
of the German version (FoP-Q-SF) has been developed
and comprehensively validated in a large sample
(n = 1083) of breast cancer patients [67,68].
Psycho-Oncology (2011)
DOI: 10.1002/pon
 Table 3. Longer FCR questionnaires (10+ items)
Intended/ Internal External
No. of Response suitable Validation Item Subscales/ Time validity reliability
Author Name of scale items format population Country sample(s) development domains frame Reliability assessed assessed Comments

Northouse Fear of Recurrence 22 Likert scale 1 Breast USA 30 Purposely No subscales. None Internal No Yes Reported
[9] Questionnaire (strongly Suitable for mastectomy designed. Item domains: consistency: (one to be a
(FRQ) agree) to 5 mixed patients [9] ▪Health worry a = 0.92 study) unidimensional
Patient (strongly cancers 227 Item wording ▪Uncertainty patients [51] Short measure, but
and carer disagree). ambulatory reviewed by ▪Triggers and a = 0.91 form factor
version Higher breast cancer clinical experts. ▪Concerns of carers [52] (one structure has
available. scores patients [51] significant study) not been
6-item indicate 66 women others evaluated.

Copyright © 2011 John Wiley & Sons, Ltd.

short higher with breast ▪Impact on
form [54] FCR. cancer aged future
>30 years [53] ▪Attitudes
70 early-stage toward future
breast cancer
patients [54]
123 cancer
survivors and
123 carers [52]
Vickberg [7] Concerns About 30 Section 1 Breast USA 169 breast Literature Subscales: None Internal Yes Yes Multidimensional.
Recurrence Scale (overall cancer review and 1. Overall Fear consistency: (two (two
(CARS) FCR): Likert survivors pilot interviews Health Overall fear studies) studies)
scale 1 (not 1–7 years and theoretical Worries a = 0.87
at all) to 6 post framework. Womanhood Subscales
(continuously/ diagnosis [7] Worries a = 0.89–
terribly). 136 Dutch 2. Role Worries 0.94 [7] Dutch
Section 2: breast cancer 3. Death Test–retest: version
Likert scale 0 patients Worries Dutch version available.
(not at all) (Dutch overall fear
to 4 (extremely). version) r = 0.78
Higher scores [56] Subscales
indicate higher r = 0.77–0.89
FCR. [56]

Herschbach Fear of Progression 43 Likert scale Patients with Germany n = 439 Patient interview 1. Affective None Internal Yes (one Yes (one Measures
et al. [59] Questionnaire 1 (never) to chronic 152 cancer and literature reactions consistency study) study) fear of
5 (very often). illness patients review, DSM-IV 2. Partnership/ (a = 0.95) Short Short progression
Higher scores (diabetes 150 diabetes conceptualisation family (a = 0.87 form form not recurrence.
12-item indicate higher mellitus, mellitus patients 3. Occupation short form) (one (one Wording
short form FCR. cancer and and 137 rheumatic 4. Loss of Test–retest study) study) suitable for
available rheumatic disease patients autonomy n = 69 patients with
[67] diseases) 5. Coping with (r = 0.94) all stages of
anxiety disease.
B. Thewes et al.

Psycho-Oncology (2011)
DOI: 10.1002/pon
A systematic review of fear of recurrence measures

Fear of Cancer Recurrence Inventory (FCRI) [69]

This 42-item questionnaire is a multidimensional FCR
version in

validated.
currently
Original

French.

version
English
scale intended for use with all cancer patients. Items

being
were developed on the basis of a cognitive–behavioural
formulation of FCR [70], literature review and DSM-
IV diagnostic criteria. Exploratory factorial analysis
study)

revealed seven factors explaining 64% of the variance

(one
Yes

in total scores including triggers, severity, psychological

distress, functional impairment, reassurance and coping
studies)

strategies. This structure was supported in a large mixed

(two
Yes

cancer sample (n = 1989) with confirmatory factor

analysis (S. Simard, personal communication). The
FCRI was originally validated in a French-speaking
Test–retest
consistency

sample of 600 patients with mixed cancers [69] and

(a = 0.95)

(r = 0.89)
reliability
Internal

was found to be internally consistent across all subscales

and to have moderate to high 1-month test–retest
reliability across subscales. Convergent validity was
month

demonstrated with other standardised FCR measures

Past

(CARS and FRQ) and the Illness Worry Scale [71]

(r = 0.68 to 0.77). Concurrent validity was demonstrated
3. Psychological

7. Reassurance
5. Functioning

by moderate correlations with the IES Intrusion (r = 0.66)

impairment
1. Triggers
2. Severity
Subscales:

4. Coping
strategies

6. Insight

and Avoidance subscales (r = 0.52) and with HADS

distress

Depression (r = 0.43) and Anxiety subscales (r = 0.64).

Discriminant validity was supported by negative correla-
tions with EORTC Quality of Life Questionnaire
conceptualisation
literature review,
pilot interviews,
interviews with
clinical experts,

and theoretical

(EORTC-QLQ) (r = 0.20 to 0.36). Sensitivity to

framework.

change has not been investigated. A large study exploring

Based on

DSM-IV

the psychometric properties of an English version is un-

derway (S. Lebel, personal communication).
Due to its strong correlation with the total FCRI score
599 French–

from registry

(r = 0.84), the authors suggest that the nine-item FCRI-Se-

randomly
Canadian

survivors

database

verity Subscale may be suitable for use as a brief screening

selected
Cancer

measure. The short form has high internal consistency and

adequate 1-month test–retest reliability [69]. Convergent
validity with other standardised measures of FCR (CARS
Canada

and FRQ) was supported (r = 0.66 to 0.77). Concurrent

criterion validity was demonstrated by moderate correla-
tions with subscales of the IES and the HADS (r = 0.35
to 0.57). Discriminant validity was also supported by
cancers

negative correlations with EORTC-QLQ (r = 0.17 to

Mixed

0.38). The capacity of the FCRI-Severity to screen for

clinical levels of FCR was assessed in a study of mixed
cancer patients (n = 60), using a purpose-designed semi-
Likert scale 0

time). Higher
(a great deal

structured interview of FCR administered by clinical

(not at all or
never) to 4

or all the

psychologists. Receiver operating curve analysis showed

indicate
scores

higher
FCR.

that a cut-off score of 13 or higher on this short form

had optimal sensitivity (87%) and specificity (75%) to
short form

identify those patients with clinically significant levels of

available
9-item

FCR [72].
42

Summary
Fear of Cancer

The Medical Outcomes Trust (MOT) has defined a set of

Recurrence

attributes and review criteria for patient-reported outcome

Inventory
(FCRI)

questionnaires [73] that are widely accepted and are

recommended to assess the merit of the measurement tools
used in cancer [74]. The specific details and definitions of
Savard [69]
Simard and

each attribute are documented elsewhere [73]. We used

the MOT criteria to quantitatively compare and rate each
of the brief and longer measures included here. FCR

Copyright © 2011 John Wiley & Sons, Ltd. Psycho-Oncology (2011)

DOI: 10.1002/pon

subscales were excluded from this rating process, as most
did not satisfy any MOT criteria. Instruments were
evaluated against MOT attributes and assigned a rating
of 1 if they met all the criteria for a given attribute, 0 if they
did not meet any criteria and 0.5 if they partially met the
criteria. Attribute ratings were summed to create a total
quality rating. Table 4 summarises the results of this
rating process. The highest scoring brief measures were
the ASCS [41] and the FRRS [19]. Amongst the longer
measures, the breast cancer-specific CARS [7] and the
FoP-Q [59] achieved the highest ratings.
Discussion
Definitions and criteria of FCR
Depending on definitions adopted and the measures
used, the construct of FCR may currently include fears
about previous forms of cancer returning, developing a
new primary of a previous cancer and developing
entirely new forms of cancer, metastases or disease
progression. Further research and debate is needed to
clarify whether these are distinct or related constructs
and to develop consensus about the most useful defini-
tion of FCR. Many researchers have adopted the
Vickberg definition of FCR (i.e. ‘fear that cancer could
return or progress in the same place or in another part
of the body’) because it applies to all cancer patients
irrespective of the stage of disease. Careful consider-
ation of specific wording of instructions and items
should be undertaken when selecting FCR measures
to ensure that the instrument selected measures the
specific type of fear that is most pertinent to the popu-
lation under investigation.
Unlike other psychological problems such as anxiety
or depression, for which researchers have diagnostic
consensus, there has been little or no debate about the
possible distinction between a clinical or ‘pathological’
FCR and a normal fear response to cancer. To date,
only one study has attempted to establish a clinical
cut-off score for an FCR scale (i.e. FCRI-Severity) by
using a purpose-designed face-to-face semi-structured
interview of FCR as a gold-standard measure [69].
Although rigorous methodology was used in this
study, the diagnostic interview has not been validated.
Further research and discussion is needed to clarify
and develop consensus around these issues. The
current lack of gold-standard diagnostic criteria limits
comparison between studies, the development of
specific FCR interventions, the capacity to adequately
evaluate the criterion validity of the different FCR
scales and the development of screening tools.
In the absence of consensus about clinical FCR, the
available measures of FCR point to some likely charac-
teristics of severe or clinical FCR including a perceived
risk of recurrence that is disproportionate to actual risk,
functional impairment resulting from FCR, a long dura-
tion and greater severity of the problem, and frequent
self-examination and demands for medical tests for
potential signs of recurrence. Clinicians should be aware
Copyright © 2011 John Wiley & Sons, Ltd.
B. Thewes et al.
of these concerns in cancer survivors and refer those
with such presentations to mental health professionals.
Dimensionality of FCR
Common dimensions of FCR assessed by many of the
identified measures included intensity, frequency, and
psychological or functional impact of FCR. Fewer
measures assess other dimensions such as triggers,
duration, concerns about FCR, social or family impact
of FCR and fears of death. Some measures assess
unique dimensions of FCR that are not captured by
any of the other tools. For example, womanhood
worries (CARS), loss of autonomy (FoP-Q), degree
of insight (FCRI) and coping strategies to cope or
influence FCR (FCRI). According to available measures,
FCR seems to be a multidimensional construct and not
simply a unidimensional emotional factor (e.g. fear),
but this hypothesis needs to be validated. Thus, research-
ers and clinicians should consider carefully the dimen-
sions of FCR that are assessed by a given tool when
selecting a self-report measure for their chosen purpose.
Timing of assessment
Some scales included in the present review included a
reference time frame (e.g. ‘past week’ or ‘past month’),
whereas others did not. Although responses to FCR
measures are moderately correlated with measures of
general anxiety, it remains unclear to what extent FCR
measures tap or are influenced by state anxiety. Further
research to clarify this relationship would help to
determine the relevance of a time frame. Indeed,
the time frame could have important implications
for instrument selection, particularly if patients are
asked to complete FCR measures at or around the
time of follow-up appointments or examinations, a
known time point for peak state anxiety [11,75].
Purpose of assessment
Selection of any measurement tool will depend
largely on the purpose for which a questionnaire is
being used. Psychological instruments can fulfil three
main functions: discriminative, predictive and evaluative
[76]. Discriminative measures are used to distinguish
between individuals or groups on an underlying
dimension when no external criterion or gold standard
is available for validating these measures (e.g. IQ tests).
Predictive instruments are used to classify individuals,
either concurrently or prospectively, into a set of
predefined measurement categories when a gold
standard is available (e.g. screening or diagnostic tests).
Evaluative instruments are used to measure the magni-
tude of longitudinal change in an individual or group
on the dimension of interest (e.g. QOL instruments) [76].
Because of the lack of an established gold-standard
measure, most available measures of FCR have focused
on demonstrating internal consistency, cross-sectional
construct validity and convergent and discriminant
Psycho-Oncology (2011)
DOI: 10.1002/pon
 A systematic review of fear of recurrence measures

Table 4. Summary of the key attributes and quality ratings of FCR measures according to Medical Outcomes Trust (MOT) criteria [73]
MOT attributesa

Burden
Conceptual and and Cultural and Total
measurement alternative language quality
Scale model Reliability Validity Responsiveness Interpretability forms adaptations ratingb
Brief measures
Cancer Worry Scale-A No Partial No No No No No 0.5
(CWS-A) [26]
Lasry and Margolese Fear No Partial No No No No No 0.5
of Recurrence Index
(LMFRI) [29]
Fear of Relapse/Recurrence No Partial Partial No Partial No No 1.5
Scale (FRRS) [19]
Fear of Recurrence Scale No Partial No No No No No 0.5
(A) (FRSa) [38]
Cancer-related Worries Partial No No No No No No 0.5
Scale (CRWS) [40]
Assessment of Survivor Yes Partial Partial No Partial No No 2.5
Concerns Scale
(ASCS) [41]
Cancer Worry Scale (B) No No No No No No No 0
(CWS-B) [43]
Worry About Prostate No No Partial No No No No 0.5
Cancer Scale
(WPCS) [45]
Worry of Cancer No No Partial No No No No 0.5
Scale —Revised
(WOC-R) [8]
Fear of Recurrence Scale No No No No No No No 0.0
(B) (FRSb) [48]

Longer measures
Fear of Recurrence No Partial Partial No No No No 1
Questionnaire
(FRQ) [9]
Concerns About Yes Yes Partial No Partial Partial Yes 4.5
Recurrence
Scale (CARS) [7]
Fear of Progression Yes Yes Partial Partial Partial Partial Partial 4.5
Questionnaire
(FoP-Q) [59]
Fear of Cancer Yes Yes Partial No Partial Partial Partial 4
Recurrence
Inventory (FCRI) [69]
a
Definitions and specific criteria for attributes are documented by the Scientific Advisory Committee of the MOT [73].
b
Yes = 1; No = 0; Partial = 0.5.

forms of validity. Thus, most FCR measures are mainly
discriminative. Although the authors of FCRI proposed
a clinical cut-off score for the FCRI-Severity, the
predictive value of this short form needs confirmation.
In addition, although some questionnaires tap areas
related to clinical FCR, very few studies have explored
sensitivity to change. Consequently, none of the available
measures currently have sufficient data available to
recommend their use as predictive or evaluative instru-
ments. Interventions to mitigate FCR are currently being
developed and evaluated [6], and interest in FCR as a
secondary outcome is growing. More studies that
examine the longitudinal course of FCR, including
assessment at key time points likely to alter FCR (e.g.
immediately prior to and after routine follow-up exami-
nations or before and after psychological interventions
to reduce FCR) would help to clarify issues of sensitivity
to clinical change.
Cross-cultural validity
The majority of FCR measures identified by the present
review have been developed in English and validated in
samples of American cancer patients. Notable excep-
tions are the FoP-Q, which has been developed and
validated with German cancer patients, the FCRI,
which has been developed and validated with French-
speaking Canadian cancer patients, and the CARS,
which has been validated in Dutch. A few questionnaires
have been forward–backward translated into other
languages, but limited data about their psychometric
properties have been published.

Copyright © 2011 John Wiley & Sons, Ltd. Psycho-Oncology (2011)

DOI: 10.1002/pon

To date, there has been very little work to examine
FCR from a cross-cultural perspective, and it is unclear
to what extent the meaning and manifestations of FCR
are translated across cultures. Future studies are needed
to confirm the cross-cultural validity of many of the
existing measures of FCR.
It is apparent that a multiplicity of FCR question-
naires has been developed and evaluated using classical
test theory. Despite some differences, there is consider-
able commonality across domains and even specific
items. New approaches to questionnaire development
and analysis may help to address this overlap. Specifi-
cally, the application of Item Response Theory (IRT)
to the study of FCR could be very useful. In brief, an
IRT approach makes use of the pattern of item
responses and tailors the questionnaire to the individ-
ual. This allows more fine-grained measurement, and
it is more efficient. In addition, this approach does not
require that researchers select among competing
questionnaires, as it is possible that all such items can
be pooled, given weights and even administered as part
of a computer-adaptive testing protocol, with items
selected sequentially and strategically on the basis of
the respondent’s pattern of previous responses [77].
There is still considerable work that needs to be done
before IRT can be used in FCR assessment, in particu-
lar, the assumptions underlying this model, such as
unidimensionality of the underlying FCR latent construct,
monotonicity (i.e. consistent ordering of variables of
the latent construct and item endorsement) and local
independence (i.e. simply, the scale items are indepen-
dent of one another when the effect of the latent
variable is taken into consideration) [78]. Although
such models are complex, substantial progress is
being made in this area (www.nihpromis.org), and
it has high potential to be applied to FCR assessment.
In addition, greater examination of discrete constructs
using latent variable models such as confirmatory
factor analyses would also be useful to increase the
theoretical rigour of both newly developed and
existing scales.
Conclusions
This review is the first comprehensive review of mea-
sures of FCR. The present study identified 20 multi-item
self-report scales of FCR. When selecting an instrument
to measure FCR, researchers and clinicians need to con-
sider several aspects including the number of items, FCR
dimensions assessed, time frame and psychometric prop-
erties. Relatively few of the available tools have data on
both internal and external forms of validity, and only a
few scales have comprehensive data available on their
psychometrics properties.
Hitherto, FCR has not been commonly assessed in
studies of cancer survivorship. It is hoped that this
review will encourage clinicians and researchers to
assess FCR in future studies because it is a common
concern and one that is distinct from more generalised
psychological symptoms or distress. Although some
Copyright © 2011 John Wiley & Sons, Ltd.
B. Thewes et al.
may have ethical concerns that assessing FCR may
cause patient distress, none of the manuscripts
reviewed reported patient distress as a result of the
completion of FCR instruments.
Researchers and clinicians seeking to assess FCR
as one of a range of constructs may prefer to use
brief measures or single-item measures of FCR. Of
the brief questionnaires (2–10 items), several have
been developed for specific cancer populations but
are suitable for heterogeneous cancers. All brief
measures have reported some preliminary psycho-
metrics properties. The FRRS [19] has had its psy-
chometric properties evaluated in the largest number
of studies, and the ASC [41] has undergone extensive
validation work with mixed cancer survivor populations.
Where FCR is the primary outcome of interest or for
those seeking a more comprehensive multidimensional
assessment of FCR, longer measures will be most suited.
Of the longer FCR questionnaires (10+ items), all,
except for the FRQ [9], adopted a multidimensional con-
ceptualization of FCR, and all used a multi-step method-
ology for their empirical validation. All are internally
consistent, some have demonstrated test–retest reliability
and all have established preliminary evidence of their
validity. The FCRI [69] and FoP-Q [59] appear to have
the strongest psychometric qualities and seem to be
suitable for heterogeneous cancer populations. The
authors of these two questionnaires have proposed short
forms that may be suitable for use as screening tools.
The focus of FoP-Q specifically on concern about disease
progression rather than recurrence may make it more
suited to patients with advanced or active disease than
for those with early-stage cancer or for long-term survi-
vors. The FCRI is also the only questionnaire to explore
criterion validity using a face-to-face FCR interview as a
gold standard, with a proposed cut-off score for clinically
significant FCR.
Disease-specific FCR instruments have been devel-
oped for breast cancer, prostate cancer and ocular
melanoma, and researchers and clinicians working with
these specific diagnostic groups may prefer to use
these measures as they may tap disease-specific
issues or behaviours. However, those interested in
researching specific populations may wish to supple-
ment disease-specific FCR measures with generic
FCR measures to compare FCR across cancer types
and ultimately help researchers to establish clinical
criteria of FCR including establishing empirically
based cut-off scores for these instruments.
The establishment of a gold-standard measure of
FCR and clinical criteria for FCR is currently an
emerging area in the FCR literature. In the absence of
consensus regarding a gold-standard measure, the most
comprehensive FCR assessment proposed to date has
been a FCR-specific clinical interview that aims to
categorically determine whether or not a patient would
benefit from clinical intervention based on the severity,
frequency and duration of symptoms and degree of
functional impairment caused by FCR [72]. Although
a categorical approach to the classification of clinical
Psycho-Oncology (2011)
DOI: 10.1002/pon
 A systematic review of fear of recurrence measures

FCR may be controversial because it risks labelling Acknowledgements

some individuals who experience ‘rational’ fears as Belinda Thewes was supported by a National Breast Cancer
disordered, this approach is important in determining Post-Doctoral Research Fellowship. Phyllis Butow was sup-
whether or not a patient may benefit from help with ported by an NHMRC Research Fellowship Award.
FCR. Clearly more research and debate is needed to
determine the best method of treating problematic Note
FRC and identifying those individuals who would 1. Gleason score is a prognostic indicator of prostate
benefit most from such an intervention. Qualitative cancer. Higher Gleason score indicates more aggres-
research on patient perceptions of the diagnosis and sive tumours with worse prognosis.
treatment of clinical FCR is also warranted.
FCR is an issue for which cancer survivors want help
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