The relation between information provision and health-related quality of life, anxiety and depression among cancer survivors: a systematic review
The relation between information provision and health- related quality of life, anxiety and depression among cancer survivors: a systematic review
O. Husson 0 1 2
F. Mols 0 1 2
L. V. van de Poll-Franse 0 1 2
0 Comprehensive Cancer Centre South (CCCS), Department of Research, Eindhoven Cancer Registry , Eindhoven , The Netherlands
1 Somatic Diseases, Department of Medical Psychology and Neuropsychology, Tilburg University , Warandelaan 2, PO Box 90153, 5000 LE Tilburg , the Netherlands. Tel:
2 Department of Medical Psychology and Neuropsychology, CoRPS-Center of Research on Psychology in Somatic Diseases, Tilburg University , Tilburg
Background: Providing information that is congruent with patients' needs is an important determinant for patient satisfaction and might also affect health-related quality of life (HRQoL) and anxiety and depression levels of cancer survivors. Design: The authors systematically reviewed the available literature on the relationship between information provision and HRQoL, anxiety and depression. A PubMed literature search for original articles published until February 2010 was carried out. Twenty-five articles, all conducted between 1996 and 2009, which met the predefined inclusion criteria, were subjected to a quality checklist. Results: Satisfied patients, patients with fulfilled information needs, and patients who experience less information barriers, in general have a better HRQoL and less anxiety and depression. Out of eight intervention studies that aimed to improve information provision, only one showed a positive association with better HRQoL. Conclusion: Health care providers must pay more attention to patient-centred information provision. Additional research is needed to make definitive conclusions about information interventions as most results did not reach statistical significance due to methodological constraints. The quick development of the relatively young research field of patient-reported outcomes in cancer survivorship will make it possible to conduct better quality studies in the future.
The provision of information to patients is one of the most
important factors of supportive cancer care across the whole
cancer continuum. The goal of providing information is to
prepare patients for their treatment, to increase adherence to
therapy, to increase their abilities to cope with the illness and to
promote recovery . However, the results of a systematic
review show that 6–93% of the cancer patients report adequate
information provision as an unmet need throughout their
cancer experience [
]. Patients frequently report barriers to
receive the information needed [
]. Health care providers are
often still reluctant to give the full amount of information
about cancer and its treatment, while the majority of cancer
patients want as much information as possible about their
disease, treatment and rehabilitation [
]. The information
needs of cancer patients vary by gender, age, cultural
background, educational level, cancer type, stage of disease and
coping style [
]. Providing information that is congruent
with patients’ needs is an important determinant for patient
satisfaction and might also affect health-related quality of life
(HRQoL) and anxiety and depression levels of cancer patients.
HRQoL is a multidimensional construct that covers the
patients’ perceptions of his or her physical, emotional, social,
and cognitive functions. HRQoL assessment is an important
aspect of cancer care. HRQoL parameters providing prognostic
information can facilitate clinical decision making in terms of
better treatment selection for cancer patients [
Furthermore, cancer survivors often deal with adaptation
problems and assessment of their HRQoL could help to
improve aftercare [
]. Cancer survivors experience high levels
of psychological distress, a range of feelings and emotions that
people experience in reaction to cancer including depression
and anxiety, with an important impact on HRQoL [
the past decade, the role of information provision in cancer
care has been acknowledged. Several studies have investigated
the relationship between information provision and HRQoL,
anxiety and depression, but results seem inconsistent . The
evaluation of a possible relationship between HRQoL and
information provision is difficult because of the
conceptualisation of both constructs and methodological
challenges in measuring these constructs. Throughout this
review, information provision is defined as all cancer-related
information provided by the health care provider/nurse in oral,
written or other form. From the perspective of the patient,
information provision is mostly measured in terms of
‘satisfaction with received information’, ‘barriers to receive
information’,’ information needs’, ‘information quality’ and
‘information clarity’. Importantly, this review did not focus on
information disclosure regarding the initial cancer diagnosis or
end-of-life issues. The goal of our review was to provide
a complete overview of the literature on the impact of
information on the HRQoL, anxiety and depression levels of
cancer survivors. We used the definition of the US National
Coalition for Cancer Survivorship that defines a person as
a survivor from the moment of diagnosis through the balance
of his or her life (http://www.canceradvocacy.org/about/org/).
We hypothesise that better information provision (fulfilled
needs, less barriers, clear and high-quality information) is
related to higher satisfaction levels of cancer survivors
regarding information that may impact HRQoL, especially
mental health, and anxiety and depression levels.
A computerised search of the literature through the search engines Pubmed
and PsychINFO was carried out on 1 February 2010. The search strategy
combined the term ‘cancer’ with other key terms related to information
provision and HRQoL. For ‘information provision’, we included the terms
information, information provision, information disclosure, information
needs, information satisfaction, information level, information barriers,
written information, oral information, audiotape information, CDROM.
For the constructs of HRQoL, anxiety and depression we included the terms
quality of life, health-related quality of life, health status, well-being, anxiety
The reference lists of all identified publications were checked to retrieve
other relevant publications, which were not identified by means of the
computerised search. There were no restrictions with regard to the years of
publication. The search yielded 5732 hits.
Studies that met the following criteria were included: (i) if they evaluated
the relation between information provision and HRQoL, anxiety and
depression in adult cancer survivors, and this evaluation was one of the key
objectives of the study; (ii) if the publication was an original article (no
poster abstract, letter to the editor etc.); (iii) if the article was a full report
published in English and (iv) if it was published in a peer-reviewed journal.
Studies were excluded for the following reasons: (i) if they were individual
case reports or articles that reviewed the literature, (ii) if the study was
focused on end-stage cancer patients (terminal ill patients) because this
patient group is dealing with specific end-of-life issues, (iii) if the study
focused on communication aspects (e.g. body language), (iv) if the study
focused on information provision to family members, (v) if the study
focused on diagnosis or prognosis as primary information measure, or if (v)
HRQoL was measured with one single item and was not a part of
a validated questionnaire.
The described inclusion and exclusion criteria were applied to our initial
5732 hits. Based on their titles and abstracts, 37 articles met our criteria.
762 | Husson et al.
The 37 hard copies were obtained and reviewed by three investigators. After
careful review, 25 articles fulfilled our selection criteria and were included
in this review [
]. The flow chart of this selection procedure is shown
in Figure 1.
The methodological quality of each of the selected articles was
independently assessed by all three investigators based on established
criteria for systematic reviews (Table 1) [
]. Each item of a selected
study, that matched our criteria, was assigned 1 point. If an item did not
meet our criteria or was described insufficiently or not at all, 0 points were
assigned. The highest possible score was 13. Studies scoring 10 points or
more were arbitrarily considered to be of ‘high quality’. Studies scoring
between 6 and 10 points were rated as ‘adequate quality’. Studies scoring <6
points were considered to be of ‘low quality’.
In total, 25 studies were included, all published between April
1996 and December 2009. Different questionnaires with
different outcome measures to assess HRQoL, anxiety and
depression were used. All studies used different instruments to
measure one or more aspects of information provision.
Prospective, cross-sectional, observational as well as
intervention studies were included. The main findings are
summarised in Table 2.
The evaluation of the methodological quality of the studies by
the three reviewers yielded disagreement on some items mostly
due to differences in interpretation. These were solved through
discussion in a consensus meeting. The quality scores ranged
from 7 to 13 points (Table 2) and the mean quality score was
9.6. Not one of the studies had a low quality. Thirteen
studies had a high quality [
15, 17, 21, 22, 24, 26–28, 30, 31, 35,
]. The remaining 12 studies had an adequate quality
12–14, 16, 18–20, 25, 29, 32–34
]. General shortcomings of the
included articles were the absence of a validated
‘information’ questionnaire, absence of information about the
degree of selection of the patient sample, a cross-sectional
design, and the lack of comparison between two groups or time
health-related quality of life
Fifteen studies, 5 prospective and 10 cross-sectional, examined
the relation between information provision and HRQoL [
14, 16–20, 26–29, 34–36
]. Three prospective studies found
a positive association between information satisfaction and
12, 27, 35
]. A Swedish study of 36 patients with
a carcinoid tumour showed a positive relation between
satisfaction with doctors’ provision of information and
emotional function and global QoL at three of the four time
]. In a study among 82 head and neck cancer patients,
satisfaction with information before treatment was predictive of
better Mental Component Summary scores 6–8 months after
the end of treatment but not to the Physical Component
Summary scores [
]. The third study among 211 Chinese
Computerized search of databases and
Hard copies were obtained for more
detailed evaluation of our selection criteria
After applying our selection criteria to the
hard copies, 25 articles were selected and
were finally selected for this review
5695 articles excluded due to selection
criteria and removal of duplicate articles*
Articles excluded because:
- focused on diagnosis (9)
- HRQoL was measured with one
single item and was not a part of a
validated questionnaire (3)
nasopharyngeal carcinoma patients found that more
satisfaction with the medical information provided 1 month
after the end of radiotherapy was related to a better QoL 4
months later [
Two other prospective studies focused on the clarity and
quality of the information provided, and the need for
information. Breast cancer patients reporting unclear
information provision scored significantly worse, up to 4 years
after diagnosis, on 17 of the 27 QoL variables, including
emotional functioning, social functioning and global QoL [
Breast cancer patients who rated their level of information at
baseline as high, experienced higher QoL after 3 (P < 0.001) and
6 months (P = 0.049) [
]. Overall, prospective studies showed
that satisfied patients, patients who reported to receive clear
and high levels of information, reported better mental HRQoL
and global HRQoL. Positive associations between information
provision and physical HRQoL have not been found.
Five of six cross-sectional studies found a positive relation
between information satisfaction and HRQoL [
13, 17–20, 28
Two studies among breast cancer survivors found a strong
positive association between satisfaction with treatment and
survivorship information and mental health and vitality [
]. A British study among 102 breast cancer and 112 prostate
cancer patients concluded that after controlling for
demographic and disease characteristics, information
satisfaction explained 21% of the variance in global QoL, 12%
in physical well-being, 13% in social well-being, 8% in
emotional well-being, and 10% in functional well-being (all P <
0.001) . This study, and an Italian study among a varied
sample of 175 cancer patients, also found a positive association
between satisfaction with information received and QoL [
]. Besides, the Italian study found no differences in QoL of
adequately versus inadequately informed patients . A
French study of cancer patients with different diagnoses showed
that higher global scores for QoL were related to higher
satisfaction with all aspects of care, including the information
]. Contradictorily, lower physical and emotional
functioning also predicted higher satisfaction with the doctors’
information provision in this study. One cross-sectional study
among 30 cancer patients undergoing chemotherapy found no
differences in QoL between satisfied and dissatisfied patients
Four other cross-sectional studies focused on the clarity and
quality of the information provided, and the need for
14, 16, 29, 34
]. Worse physical and emotional
functioning were significantly associated with worse ratings of
information quality, more barriers to obtain information and
a greater need for information in two large American studies
among a sample of diverse cancer survivors [
cancer patients who reported greater difficulty in accessing
needed information or had greater unmet information needs
experienced lower emotional, functional, and social well-being
and worse physical, cognitive and role functioning as well as
lower perceptions of health competence (P < 0.01) [
the cross-sectional studies, better mental, physical and global
HRQoL were associated with fulfilled informational needs,
satisfaction with the received information, the receipt of good
quality and clear information and less information barriers.
However, one study found no difference in HRQoL [
one study reported conflicting results [
anxiety and depression
Five studies, three prospective and two cross-sectional, focused
on anxiety and depression in relation to information provision
12, 25, 27, 33, 36
]. A study of 82 head and neck cancer patients
found satisfaction with information before treatment, to be
predictive of depression but not anxiety, 6–8 months after the
end of treatment [
]. However, a study of 36 carcinoid
tumour patients found a negative relation between satisfaction
with doctors’ provision of information and anxiety and
depression at the first three of four time points (T1–T3) [
Breast cancer patients who rated their level of information at
baseline as high were less depressed after 3 (P = 0.010) and 6
months (P < 0.001) [
]. The studies with a prospective design
showed that satisfaction with the received information and less
information needs were independently related to less anxiety
The receipt of information was positively associated with the
cancer patients’ physical condition and negatively with mood
and depression in a Finnish cross-sectional study [
]. A study
among breast, prostate, cervical and laryngeal cancer patients
showed that patients who were dissatisfied with the received
information were much more likely to be depressed and were
marginally more likely to be anxious [
]. The results of the
cross-sectional studies support the results of the prospective
Some studies examined the effect of different information
interventions on the HRQoL or depression and anxiety levels of
cancer patients [
15, 21–24, 30–32
]. In a Swedish study, 210
consecutive cancer patients were randomised to one of three
information conditions before the start of curative radiation
treatment . Compared with patients receiving standard
information or standard information plus an extra brochure,
764 | Husson et al.
patients who received standard information plus group and
repeated individual information were significantly more
satisfied with the information. However, there were no
differences with respect to anxiety, depression, subjective
distress and QoL. A Dutch study investigated the effects of the
Interactive Breast Cancer CDROM, compared with the
standard oral information as a decision aid for 180 breast
cancer patients with a choice between breast conserving therapy
and mastectomy [
]. An overall positive effect of the CDROM
was found on satisfaction with the general and breast
cancerspecific information received. Furthermore, an overall positive
effect of the CDROM condition was found on generic QoL as
well as on breast cancer-specific QoL. Subsequent analyses
revealed that at 3 and 9 months follow-up, patients in the
CDROM condition reported better general health than control
patients. Additionally, at 9 months follow-up, the CDROM
condition reported better physical functioning, and less pain
and arm symptoms.
Three studies tested the efficacy of an audiotaped
consultation on the QoL of cancer patients showing no main
effect of the intervention on QoL or mood state [
21, 22, 31
The first study showed that the provision of a taped initial
consultation resulted in more satisfied patients than patients
allocated to the control group [
]. The other two studies
among breast and prostate cancer patients showed that the
provision of an audio tape of their primary treatment
consultation was not significantly related to patient satisfaction
with communication and was not significantly affected by
choice of receiving the audio tape [
]. Furthermore, the
compliance was low with 40% of the patients who did not listen
to the audio tapes, mainly because they felt emotionally not
prepared to listen [
]. However, patients rated the audiotape
intervention positively. Patients receiving the consultation
audio tape reported having been provided with significantly
more disease and treatment information in general and more
information about treatment alternatives and treatment
sideeffects in particular, than patients who did not receive the audio
A Greek study of 145 cancer patients who were randomised
to receive a booklet about chemotherapy or not showed that
patients provided with the information booklet reported
significantly higher rates of satisfaction with information than
the control group, felt better and more informed, and perceived
the information received as being clearer and more detailed
]. However, no significant benefits in anxiety, depression
and QoL occurred. Another study randomised patients to
receive oral information only or oral plus written information
describing the disease and its associated surgery and outcomes
]. There was no significant difference in QoL at baseline,
during the postoperative period or at 3 months post-surgery. In
addition, the QoL scores for each dimension (anxiety,
depressed mood, positive well-being, self-control, general
health and vitality) were not statistically different between both
groups at each time of analysis.
In a cluster randomised trial, no statistically significant
effects of a Point of Information and Support (PIS) on anxiety
or dissatisfaction levels was observed [
]. However, 52% of
centres in the experimental group did not implement the PIS in
accordance with the protocol. The same study highlighted that
235 breast cancer
182 breast cancer
25item Likert scale;
level of information
scale for recently
item Likert scale;
level of information
One question about
HADS; IES; Cancer
CASC, Comprehensive Assessment of Satisfaction with Care; EORTC, European Organization for Research and Treatment of Cancer; FACT, Functional
Assessment of Cancer Therapy; HADS, Hospital Anxiety and Depression Scale; HRQoL, health-related quality of life; SCIP, Satisfaction with information
profile; IES, Impact of Event Scale; SF-36, Medical Outcomes Study Short Form 36; MOS20, Medical Outcomes Study 20; PIS, Point of Information and
Support; POMS, Profile of Mood States.
a greater likelihood of dissatisfaction was associated with the
presence of anxiety and/or depression [
The aim of this systematic review was to summarise and
evaluate the results of all studies focussing on the relationship
between information provision and HRQoL and psychological
distress. All five prospective observational studies found
a positive relation between appropriate information provision
(satisfaction with the received information, fulfilled
informational needs, high quality and clear information) and
mental and global HRQoL and a negative relation between
appropriate information provision and depression and anxiety.
The results of all 12 cross-sectional observational studies are in
accordance with the findings of the prospective studies;
however, they also found a positive association between
appropriate information provision and physical HRQoL. Only
one of eight intervention studies found a positive effect of
information on HRQoL.
The prospective observational studies found a strong positive
relation between adequate information provision and mental
health but not physical health. A better understanding of
a patients’ situation after the information provision or the
receipt of information aimed at learning to cope with cancer or
reducing distress might be responsible for better mental health
and lower levels of anxiety and depression [
]. Patients who
had difficulties in obtaining the information they desire were
found to have less confidence in their ability to deal with
health-related issues [
]. Appropriate information provision
lead to an improved health competence, a better sense of
control over cancer and better symptom management [
From the cross-sectional observational studies, the direction of
the relationship is not clear. A lack of information, or
information of low quality, can lead to anxiety, depression or
a decreased mental and/or global HRQoL as suggested by the
prospective studies. However, some information can elevate
patients’ distress levels . On the other hand, anxiety can
inhibit information processing, patients with a poorer mental
health may have more difficulty to understand the information
even when the information is of high quality, while patients
with better global health are more satisfied beforehand because
of their better emotional state [
The results of the observational studies were not confirmed
by the intervention studies. This can be explained by the nature
of the intervention studies. The objective of these studies was to
test the efficiency of an information intervention in terms of
information satisfaction, HRQoL, anxiety or depression, while
the observational studies searched for a possible relation of
information provision and HRQoL, anxiety or depression.
Although patients in the experimental conditions overall rated
the additional information positive, felt that they received more
information and were satisfied with the overall received
information, only one intervention study observed positive
relations with HRQoL, anxiety or depression.
Most patients tend to adjust well to their disease and it is
therefore possible that additional gains in HRQoL are not easily
]. A further explanation for these results might be
the limited surplus value of the additional information given in
the experimental conditions. Written information can be useful
but is often non-specific and not tailored to patients’
information needs; this can lead to confusion or even elevation
of anxiety and depression levels [
]. Audio tapes seem to
facilitate patients’ requests to clarify earlier provided information
and might enhance the recall of information. Interventions that
aim to empower patients might be more useful and effective to
decrease anxiety and depression and enhance HRQoL .
Mostly, information is given in a neutral mode, with no direct
attempt to promote active participation of the patient in the
conversation and no attempts to influence patients’ inferences.
The information provided has an impact on the cognitive level,
with no emphasis on the effect or the emotions related to the
receipt of medical information. The intervention study with
a CDROM as decision aid operates both at the cognitive and
affective level. Patients who exit their consultation with the
belief that they played an active role had better HRQoL scores
]. An intervention might therefore be more powerful with
elements of counselling or psychotherapy [
Another explanation for the lack of intervention effects on
HRQoL, anxiety and depression levels may be the short
duration of some of the interventions. The information booklet
about chemotherapy was presented for only 30 min [
recent meta-analysis showed that psychosocial interventions
should last 12 weeks or more to improve HRQoL [
the information is offered for a short time, it seems reasonable
that patients forget a substantive amount of that provided
information. Furthermore, in six of eight intervention studies,
cancer patients were randomised on individual level, which
might result in contamination bias when the health care
practitioner gives more than the usual standard information to
the control group patients. When this happens, the effects of
the experimental conditions might be underestimated. The
CDROM study used a quasi-experimental pre-test/post-test
design and the PIS study used cluster randomisation to
overcome the problem of contamination bias and maximise
internal validity [
30, 32, 43
In addition, in some of the intervention studies, the
compliance was low; participants did not use the additional
information. For example, just below 40% of the patients in the
experimental group did not listen to the audio tapes [
the Italian PIS study showed that eventually only 48% of the
centres indeed started a PIS [
]. Results favouring these
interventions are therefore difficult to find. When the centres
that did not comply with the PIS protocol were removed from
the analyses, the intervention did improve patient-centred
]. The intervention studies showed that it is not
the quantity but the quality of information that is important for
adequate information provision. The addition of general
information, with limited surplus value, to the standard
information provided did not have an influence on HRQoL or
anxiety and depression levels. Instead of adding general
information to the standard information provided, the
interventions must be directed to give each patient the specific
high-quality information they need.
Another important issue is the role of cross-cultural
differences in information provision. Truth telling and honest
disclosure of cancer information appears to remain
controversial in southern and eastern (European) countries
]. Awareness of a cancer diagnosis or prognosis is associated
with more anxiety and depression, poorer physical, social and
emotional QoL in those countries [
]. However, among
the included papers, the association between information
provision and HRQoL, anxiety and depression was not
different between different countries.
There are several methodological issues that impede drawing
strong conclusions on the relation between information
provision and HRQoL. The included studies in this review all
used different measures and questionnaires of information
provision. There was only one validated information provision
questionnaire, the satisfaction with information profile [
other studies used subscales of (validated) questionnaires,
selfdeveloped and not yet validated questionnaires or single
questions. This makes it difficult to compare the results of the
different studies. Only recently, the European Organization for
Research and Treatment of Cancer developed a questionnaire
that evaluates the information received by cancer patients [
It might be helpful to use this validated questionnaire in
future studies because it is available in many languages, which
makes international comparison possible. Also, many
different questionnaires are used to assess HRQoL. All these
questionnaires claim to assess HRQoL or the individual’s
perception about their position in life; however, many
questionnaires measure different constructs and therefore
comparison between the studies is difficult. Taken into
account these methodological limitations, the overall picture
suggests a positive association between information provision
We can conclude that doctors should provide patients with
the information patients desire in order to optimise patient
satisfaction. Satisfied patients, patients with fulfilled
information needs, and patients who experience less
information barriers, in general have a better HRQoL and lower
levels of depression and anxiety. The consistency of these
associations indicates that further attention must be paid to
more patient-centred information provision taking into
account the differences in information needs by gender, age,
cultural background, educational level, stage of disease and
coping style. Additional research is needed to make definitive
conclusions about information interventions as most results
did not reach statistical significance due to methodological
constraints. The recent emergence of cancer survivorship
research and the increasing recognition of its importance will
hopefully lead to more research focussing on good information
provision interventions that are able to improve HRQoL and
decrease psychological distress.
Cancer Research Award from the Dutch Cancer Society
(UVT2009-4349 to L.V.v.d.P.-F.). Funding to pay the Open Access
publication charges for this article was provided by the
University of Tilburg, Oldendorff Research Institute (ORI).
The manuscript has been prepared in accordance with the style
of the journal, and all authors have approved of its contents.
This manuscript is not being considered for publication
elsewhere and the findings of this manuscript have not been
previously published. The authors declare no conflict of
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