Journal of Cancer Survivorship (2019) 13:603–610

https://doi.org/10.1007/s11764-019-00779-5

Information needs and information seeking behaviour of patients

during follow-up of colorectal cancer in the Netherlands
T. Wieldraaijer 1 & L. A. M. Duineveld 1 & W. A. Bemelman 2 & H. C. P. M. van Weert 1 & J. Wind 1

Received: 18 February 2019 / Accepted: 21 June 2019 / Published online: 8 July 2019
# The Author(s) 2019

Abstract
Purpose Adequately informing patients is considered crucial in cancer care, but need for information and information seeking
behaviour of colorectal cancer (CRC) patients in the Netherlands are currently not well known.
Methods In a prospective study, patients participating in a specialty, hospital-based follow-up program completed three consec-
utive surveys over a 6-month period to analyse their information need and information seeking behaviour.
Results Patients (n = 259) felt well informed about their treatment (86%), disease (84%), and follow-up program (80%), but less
well informed about future expectations (49%), nutrition (43%), recommended physical activity (42%), and heredity of cancer
(40%). The need for more information on these subjects remained constant over the first five postoperative years. Patients who
were younger, who had undergone chemotherapy, or who had comorbid conditions needed more information on several subjects.
One in three patients searched for information themselves, mostly on the Internet. One in four patients consulted a health care
provider for information, mostly their GP. Younger and more educated patients more often searched for information themselves,
while patients undergoing chemotherapy more often consulted the hospital nurse. Information seeking behaviour remained
constant over time.
Conclusions This study showed where current information provision is perceived as adequate and on which subject improve-
ments can be made. It identifies information seeking behaviour and proposes ways to personalize information provision.
Implications for Cancer Survivors The GP is most frequently consulted for information; involving GPs in CRC follow-up could
improve information provision on several subjects for several patients.

Keywords Colorectal cancer . Follow-up . General practitioners . Patients . Information needs . Information seeking behaviour

Introduction program for 5 years to detect possible recurrent disease and

guide them through the years following treatment [8]. During
Providing information that patients need is considered crucial this period, patients are able to ask questions and kept in-
for adequate cancer care [1, 2]. Patients who are better in- formed about relevant health issues. Traditionally, this
formed have a higher health-related quality of life, and less follow-up for CRC patients is performed mainly in secondary
anxiety and depression [3–5]. The need for information varies care, but there is an increasing tendency to involve general
between types of cancer and sometimes evolves as patients practitioners (GPs) more during this stage of care [9–12].
pass through different stages of their cancer care continuum Previous research has been performed on the information
[6, 7]. After treatment with curative intent, colorectal cancer needs or information seeking behaviour of patients after initial
(CRC) patients in the Netherlands are included in a follow-up treatment for CRC [6, 13]. These patients in the USA were
found to be well informed about their disease and treatment,
but less well informed about reducing the risk of cancer recur-
* T. Wieldraaijer rence, improvements in lifestyle, and the potential benefit of
t.wieldraaijer@amc.uva.nl involving a primary care provider in their care. Other subjects
that were identified to receive less attention during follow-up
1 were diet/nutrition and managing bowel symptoms [7].
Department of Primary Care, Amsterdam UMC, University of
Amsterdam, location AMC, 22660, 1100 DD Amsterdam, the Interestingly, in only a minority of the articles, patients had
Netherlands actually been asked about their needs, and few articles report-
2
Department of Surgery, Amsterdam UMC, location AMC, ed how patients searched for information [6, 7]. Many studies
Amsterdam, the Netherlands published on the subject are presented on the online database
604 J Cancer Surviv (2019) 13:603–610

of the US Health Information National Trends Survey [14]. Statistics

Finney Rutten et al. demonstrated that information seeking is
common in cancer survivors, and the percentage of survivors The data were collected using an online survey program
seeking information is increasing in recent years [15]. (SurveyMonkey) and analysed using SPSS Statistics 25 and
The information needs and information seeking behaviour MLwiN 2.34. We performed an independent samples t test
of CRC patients in the Netherlands are currently not well and chi-squared test for comparison between participants
known. The regular follow-up visits take place at the hospital, and non-participants. To examine the differences between spe-
while every patient in the Netherlands also has a regular GP cific subgroups of patients, we performed a mixed effects
who acts as first contact and often provides continuous care. logistic regression to account for the repeated observations
Patients might therefore consult several health care providers within patients. Thematic analysis was performed for re-
for information. To what extent patients feel informed by sponses to open questions. When presenting the results over
health care providers and whether they look for information time, we divided all patients into three groups, according to
themselves needs to be examined to see if improvements can their time after surgery at the time of filling out the survey: (1)
be made. within 6 months after surgery, (2) between 6 and 12 months
Therefore, we performed a prospective study in which all after surgery, and (3) later than 12 months after surgery. We
patients currently in a CRC follow-up program were asked to chose this way of representation because analyses of longitu-
complete three consecutive surveys. In this paper, we aim to dinal data from individual participants and subgroups of pa-
report on (1) whether patients feel informed about the different tients did not show any change over time. We confirmed the
subjects of follow-up care and if they need more information validity of dividing the patients in this way, and checked that
on any subject, (2) whether and how patients look for infor- changing the number of groups or the time frames used did not
mation themselves, and (3) whether there are any differences change the outcomes presented here.
in subgroups of patients.
Ethical statement

The Medical Ethics Committee of the Amsterdam University

Methods Medical Centres reviewed the protocol and judged that a for-
mal evaluation by the committee was not required.
Patients Nevertheless, all participants received study information and
provided verbal and written consent.
We performed a prospective cohort study among patients
treated with curative intent for CRC and who were currently
participating in a follow-up program (i.e. the first five postop- Results
erative years). Recruitment was done at the outpatient clinics
of six Dutch hospitals. Patients with TNM stages 1–3 disease Four hundred eighty-two patients were contacted of whom
were included. Patients were eligible if they had a (temporary) 259 agreed to participate (response rate 54%); 222 patients
stoma, and if they had received or were still undergoing adju- completed all three surveys (86%). Patients that did not par-
vant chemotherapy. Patients were excluded in case of heredi- ticipate were older (average 72 versus 67 years, p < 0.001) but
tary CRC, inflammatory bowel disease, (sub)total colectomy, otherwise similar to the participating group. Reasons for not
history of other primary cancer, or any other condition where participating were as follows: too much effort (N = 66), did not
specialized follow-up care was needed. We identified patients wish to disclose a reason (N = 47), lack of interest (N = 41), the
by means of hospital databases used for follow-up planning. study being too confrontational (N = 36), feeling too old/
feeble (N = 20), or other reasons (N = 13).
Table 1 shows the characteristics of all participants. The
Survey average age was 67 years (range 32–94), 54% were male,
and the median time after surgery at baseline was 7 months
Patients were asked to complete an identical survey at three (range 0–60). One in three participants had undergone adju-
different times: (1) at inclusion of the study, (2) 2 months after vant chemotherapy, with a quarter of those (n = 35) undergo-
inclusion, and (3) 6 months after inclusion. This survey ing chemotherapy during the survey. Fifty percent of all pa-
contained questions on sociodemographic background, life- tients had one or more chronic comorbid condition.
style, information provision, information need, and informa- Table 2 shows the frequency of health care provider visits
tion searching. Information about cancer characteristics, stag- reported by patients. Two thirds of patients consulted their
ing, treatment, comorbid conditions, and medication use was GP 1–5 times the previous year, with a small percentage
obtained from patients’ hospital and general practice records. (6%) consulting their GP more than 10 times. This
J Cancer Surviv (2019) 13:603–610 605

Table 1 Patient and disease characteristics at baseline

Patients (N = 259)

Age (mean years, SD1) 67 (SD 10.1)

Male (%) 141 (54%)

Time after surgery (median in months, IQR2) 7 (4–13)
Tumour stage3
1 (%) 73 (28%)
2 (%) 88 (34%)
3 (%) 98 (38%)
Location of tumour
Colon 230 (89%)
Rectum 29 (11%)
Type of surgery
Right hemicolectomy 116 (45%)
Transverse colectomy 6 (2%)
Left hemicolectomy 21 (8%)
Sigmoid colectomy 55 (21%)
Recto-sigmoid resection 56 (22%)
Abdominoperineal resection 5 (2%)
Chemotherapy
Currently undergoing adjuvant chemotherapy 35 (14%)
Finished adjuvant chemotherapy or neo-adjuvant chemoradiotherapy4 59 (23%)
Living situation
Living together 198 (76%)
Living alone 61 (24%)
Employment status
Active 46 (18%)
Sick leave 21 (8%)
Retired 192 (74%)
Educational attainment
Primary or none 12 (5%)
Secondary 149 (58%)
Vocational education 70 (27%)
University 28 (11%)
Chronic comorbid condition
None 129 (50%)
Cardiovascular disease 88 (34%)
Diabetes mellitus 31 (12%)
Severe arthrosis 25 (10%)
Asthma/COPD 18 (7%)
Depression 14 (5%)
Other5 41 (16%)
Stoma 38 (15%)
Smoking
Yes 25 (10%)
Previously 151 (58%)
No 83 (32%)
Medication use
Prescribed medication 115 (44%)
Over-the-counter medication only 67 (26%)
None 77 (30%)
Regular physical activity
None 70 (27%)
Low intensity (such as walking, cycling) 93 (36%)
High intensity (such as sports, exercise) 96 (37%)

1
SD standard deviation
2
IQR interquartile range
3
Tumour stage was defined using the TNM5 criteria
4
Given only in rectal carcinoma
5
Reported by less than 5% of respondents; renal failure, liver disease, skin disease, peptic ulcers, and various other disorders
606 J Cancer Surviv (2019) 13:603–610

consultation rate remained constant over time. Most patients intended to eat (even) healthier. Only a small percentage need-
had a regular surgeon or oncology specialist, and about half ed guidance to eat healthier. About one in five patients had
of patients had a regular specialized hospital nurse. Most become physically more active because of their cancer, and
patients reported to feel reassured by their surgeon or oncol- one in three intended to get more active. The need for guid-
ogy specialist and specialized hospital nurse, and most pa- ance to get more active was low. The cancer diagnosis had
tients reported being involved in making their own treatment made two thirds of patients stop smoking, but only between 6
decisions (Table 2). and 12 months after treatment. The intention to stop smoking
Figure 1 shows how many patients reported feeling in- and the need for help to stop smoking were low.
formed about various subjects, and whether they thought they Patients younger than 65 years felt more informed about
needed more information on these subjects. Patients who re- the heredity of cancer (OR 2.04, 95% CI 1.39–3.00), and
cently (< 6 months) had surgery felt more informed about their needed more information than older patients on the follow-
treatment (odds ratio (OR) 2.17, 95% confidence interval up program (OR 1.61, 95% CI 1.06–2.46), what to expect in
1.25–3.76), and disease (OR 2.17, 95% CI 1.28–3.65), but the future (OR 1.57, 95% CI 1.06–2.31), nutrition (OR 1.53,
no other differences over time were found on any of the sub- 95% CI 1.00–2.34), and ways to improve their symptoms (OR
jects or needs. Patients felt most informed about their treat- 1.79, 95% CI 1.18–2.71). Patients that had undergone chemo-
ment (86%), disease (84%), follow-up program (80%), and therapy or were currently undergoing chemotherapy felt more
how to contact the hospital if necessary (68%). Need for more informed about (physical) symptoms to be aware of (OR 1.54,
information on these subjects was low. Patients felt less in- 95% CI 1.05–2.25), what to expect in the future (OR 1.60,
formed about what to expect in the future (49%), nutrition 95% CI 1.09–2.33), nutrition (OR 1.48, 95% CI 1.02–2.13),
(43%), recommended physical activity (42%), the heredity recommended physical activity (OR 1.71, 95% CI 1.18–2.48),
of cancer (40%), and how to improve their symptoms ways to improve their (physical/mental) symptoms (OR 1.79,
(36%). Need for more information was especially high on 95% CI 1.24–2.57), but also needed more information on their
the heredity of cancer (39%), what to expect in the future treatment (OR 1.69, 95% CI 1.04–2.73), and follow-up pro-
(36%), and nutrition (26%) (Fig. 1). gram (OR 1.90, 95% CI 1.25–2.89). Patients with a chronic
To examine the need for more information on lifestyle, comorbid condition needed more information on how to con-
patients responded to several statements. About half of the tact the hospital if necessary (OR 2.46, 95% CI 1.23–4.90),
patients reported that cancer had made them eat healthier, or what to expect in the future (OR 1.55, 95% CI 1.06–2.25),

Table 2 Self-reported experience with health care providers

< 6 months after 6–12 months after > 1 year after

treatment (N = 187) treatment (N = 239) treatment (N = 198)

How many times have you visited your GP in the last 12 months? N (%) N (%) N (%)

Not once 11 (6) 16 (7) 33 (17)

1–5 times 129 (69) 165 (69) 128 (65)
5–10 times 35 (19) 42 (18) 25 (13)
> 10 times 12 (6) 16 (7) 12 (6)
Question Yes (%) Yes (%) Yes (%)
Do you have a regular specialist at the hospital? 162 (87) 216 (90) 176 (89)
Is this important to you? 170 (91) 217 (91) 181 (91)
Do you have a regular nurse at the hospital? 97 (52) 112 (47) 70 (35)
Is this important to you? 120 (64) 133 (56) 98 (50)
Do you know how to contact other caregivers when necessary 169 (90) 216 (90) 169 (85)
(such as social worker, psychologist, nutritionist, and physical therapist)
Is this important to you? 154 (82) 189 (79) 165 (83)
Were you involved in deciding you own treatment? 158 (85) 193 (81) 163 (82)
Is this important to you? 97 (52) 205 (86) 174 (88)
Does your surgeon/oncology specialist reassure you? 176 (94) 229 (96) 188 (95)
Is this important to you? 183 (98) 236 (99) 192 (97)
Does your hospital nurse reassure you? 155 (83) 202 (85) 158 (80)
Is this important to you? 160 (86) 202 (85) 162 (82)
J Cancer Surviv (2019) 13:603–610 607

Fig. 1 Number of patients who reported feeling informed about various subjects, and whether they thought they needed more information on these
subjects

recommended physical activity (OR 1.74, 95% CI 1.10–2.75), themselves, mostly on the Internet (65%), by asking friends
and the heredity of cancer (OR 1.81, 95% CI 1.26–2.61). (28%), or by reading an information brochure (25%). Patients
Table 3 shows information seeking behaviour over time. younger than 65 years more frequently searched for informa-
One in three patients reported searching for information tion themselves (OR 1.66, 95% CI 1.13–2.43), and more often

Table 3 Information seeking behaviour over time

< 6 months after treatment 6–12 months after treatment > 1 year after treatment
(N = 187) (N = 239) (N = 198)

Yes (%) Yes (%) Yes (%)

Have you searched for information yourself? 64 (34) 77 (32) 66 (33)

If yes, where?
1. Internet 44 (69) 44 (57) 47 (71)
2. Friends 21 (33) 20 (26) 16 (24)
3. Information brochure 18 (28) 18 (23) 16 (24)
Other miscellaneous† 9 (14) 10 (13) 8 (12)
Have you consulted a caregiver for additional information?‡ 42 (23) 59 (25) 47 (24)
If yes, whom?
1. GP 18 (43) 30 (51) 26 (55)
2. Surgeon/oncology specialist 12 (29) 23 (39) 32 (68)
3. Hospital nurse 17 (41) 10 (17) 12 (26)
Other miscellaneous§ 28 (67) 58 (98) 36 (77)
†
Reported by less than 5% of patients: patient organization (2%), colleagues (1%), books/magazines (1%)
‡
More than one caregiver could be reported; numbers overlap
§
Reported by less than 5% of patients: physical therapist (4%), alternative medicine practitioner (3%), specialist other than follow-up care coordinator
(3%), assistant to GP (3%), pharmacist (2%), psychologist (2%), nutritionist (1%), social worker (1%)
608 J Cancer Surviv (2019) 13:603–610

used the Internet (OR 2.58, 95% CI 1.66–3.99). Patients with information themselves, or consult a health care provider for
a university education also more frequently searched for in- more information.
formation themselves (OR 2.18, 95% CI 1.24–3.82), and used
the Internet (OR 3.08, 95% CI 1.69–5.62) and friends (OR Comparison to previous literature
3.26, 95% CI 1.58–6.72) more frequently as sources. One in
four patients consulted one or more health care providers for The subjects on which the patients in this study felt well
information, mostly their GP (50%), surgeon or oncology spe- informed are in line with previous reports [6, 7, 13, 15]. The
cialist (45%), or hospital nurse (26%). Patients currently un- provision of information could be improved most where
dergoing chemotherapy were more likely to consult their spe- patients’ unmet need for information is highest. As con-
cialized hospital nurse for information (OR 3.30, 95% CI cluded by Salz et al., it would appear that CRC patients
1.33–8.21). Information seeking behaviour and sources of in- need more information that allows them to plan for the
formation remained constant over time. future, as opposed to more information on the treatment
they have undergone [13]. For instance, more information
on nutrition, recommended physical activity, and ways to
Discussion improve long-term physical and mental symptoms could
possibly serve these needs [4, 7, 13, 16–19]. Information
This paper reports on the information needs and information on the heredity of cancer appeared to be the most prominent
seeking behaviour of colorectal cancer (CRC) patients after unmet need in our patients. CRC follow-up care providers
initial treatment. By means of three consecutive surveys, we should take note of this need for information on heredity
prospectively evaluated (1) whether patients felt informed and address the issue, even if they think heredity does not
about the different subjects of follow-up and if they needed apply to the medical situation of their patient. The patients
more information on any subject, (2) whether and how pa- in our study reported a low need for information on work
tients looked for information themselves, and (3) whether resumption even after correction for working status, which
there were any differences in subgroups of patients. differs from previous reports [19]. Possibly, this difference
is due to the different cancer types included in other studies
Main findings (such as breast cancer and melanoma) with a lower average
age of patients, whereas our study population consisted
CRC patients in the current health care situation feel well mainly of older patients, who are more at the end of their
informed about their treatment, disease, follow-up program, working lives.
and how to contact the hospital if necessary. Other subjects, Previous studies have shown that CRC patients that have
such as future expectations, nutrition, recommended physical received dietary advice were more likely to change their diet,
activity, and heredity of cancer are perceived to be less well although lifestyle issued are not always adequately addressed
addressed. Especially high was the need for more information by health care providers [20, 21]. Tan et al. state that “clini-
on heredity and what to expect in the future. Patients felt least cians could consider addressing issues including smoking ces-
informed about work resumption and patient organizations, sation, physical activity, or other risk behaviours with their
but the need for more information on these subjects was also patients during the early survivorship period when patients
low. Apart from patients that have recently undergone surgery are likely to be more receptive to information about managing
being more informed about their treatment and disease, there risks of recurrence” [6]. However, the low percentage of pa-
were no significant changes over time for any of the subjects tients in our study that intend to improve their lifestyle or need
or needs described in this study. guidance in doing so indicates that these subjects are not
One in three patients in our study searched for information something they are keen on addressing. And yet, combined
themselves, mostly by using the Internet. One in four pa- with the unmet need on information about nutrition in partic-
tients reported visiting a health care provider specifically ular, this observation could be a starting point to improve
for more information, most frequently the GP. The informa- information on lifestyle that could contribute to an improved
tion seeking behaviour did not change with time after lifestyle and higher quality of life in CRC patients, certainly in
surgery. the long run.
Younger patients and patients with a university education Previous studies vary widely in the reported use of the
were more informed, and more frequently looked for informa- Internet [7, 22–24], but this probably has to do with differ-
tion themselves. Patients who had undergone chemotherapy ences in study populations and the increasing familiarity
were also more informed about several subjects, but also need- with the Internet as a medium over time. More important is
ed more information on their treatment and follow-up pro- a concern expressed by Cumbo et al. and Sajid et al. about
gram. Patients with chronic comorbid conditions needed more the lack of quality control on the information found on the
information on several subjects, but did not search for more Internet [22, 23]. Anticipating this concern, there have been
J Cancer Surviv (2019) 13:603–610 609

efforts to provide cancer patients with reliable and accessible Conclusions

Internet-based sources of information that are currently be-
ing evaluated and reported on, such as the Oncokompas Colorectal cancer patients after initial treatment feel well in-
[25–29]. formed about their treatment, disease, follow-up care pro-
Remarkably, patients with chronic comorbid conditions gram, and how to contact the hospital if necessary, but less
needed more information on several subjects, but did not informed about future expectations, nutrition, recommended
search for more information themselves, or consult a health physical activity, and heredity of cancer. Younger patients and
care provider specifically for more information. Possibly, be- patients who have undergone chemotherapy need more infor-
cause these patients receive regular checks at their GP for their mation and seek for more information themselves. Patients
comorbid condition, they address any questions during those with comorbid conditions also need more information on sev-
visits. However, it could also be that the information needs of eral subjects, but do not seek for more information them-
patients with comorbid conditions are therefore not brought to selves. The GP is the most frequently consulted caregiver,
the attention of health care providers and not adequately ad- which provides GPs especially with the opportunity to im-
dressed. We have not come across this in previous literature, prove information provision on several subjects, while identi-
although Finney Rutten et al. did report that older patients fying and supporting vulnerable patients during their cancer
seek information less frequently than younger patients [15], follow-up stage.
and we recommend all follow-up care providers to consider
actively addressing these potential unmet needs. Perhaps the Funding statement This study was funded by Alpe d’HuZes,
GP, who is familiar with treating comorbid conditions and the Dutch Cancer Society (grant number UVA 2013-5954).
trained in managing the complex interplay of medical history
and personal background, could play an important role in Compliance with ethical standards
reaching this potentially vulnerable group of patients. The
percentage of patients with a chronic comorbid condition in Conflict of interest The authors declare that they have no conflict of
interest.
our study seems comparatively low for the patient population.
Although we combined information from patients themselves
Ethical approval All procedures performed in studies involving human
with hospital and general practice records, half of our partic- participants were in accordance with the ethical standards of the institu-
ipants did not appear to have any chronic comorbid condition. tional and/or national research committee and with the 1964 Helsinki
Perhaps, older patients with comorbid conditions were less declaration and its later amendments or comparable ethical standards.
inclined to participate in this study, but it is probably also a
Informed consent Informed consent was obtained from all individual
reflection of our strict definition of a “chronic” comorbid
participants included in the study.
condition.
Open Access This article is distributed under the terms of the Creative
Commons Attribution 4.0 International License (http://
creativecommons.org/licenses/by/4.0/), which permits unrestricted use,
Strengths and limitations distribution, and reproduction in any medium, provided you give appro-
priate credit to the original author(s) and the source, provide a link to the
This paper is the first in the Netherlands to present both the Creative Commons license, and indicate if changes were made.
information needs and information seeking behaviour report-
ed by CRC patients currently in follow-up care. Furthermore,
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