The Dutch cancer information helpline: More critical patients
after 10 years
Astrid Reubsaeta,*, Lilian Lechnerb, Hein De Vriesa
aMaastricht University, Department of Health Education and Promotion, P.O. Box 616, 6200 MD, Maastricht, The Netherlands
bOpen University Netherlands, Faculty of Psychology, Heerlen, The Netherlands
Received 17 May 2005; received in revised form 20 October 2005; accepted 30 October 2005
Objective: This study was conducted to assess the impact and evaluation of the Dutch national cancer information helpline and to assess
differences in evaluation and impact with a comparable study conducted in 1994.
Methods: A cross-sectional survey was conducted among all callers from the target groups patients, friends/relatives and the general public
who contacted the information helpline from December 2003 until March 2004 (response 59%; N = 665).
Results: All characteristics of the helpline (provided information, educator’s communication skills, and telephone aspects) were evaluated
positively by a large majority of the respondents. All groups evaluated the impact of the helpline on overall satisfaction, anxiety, and meeting
expectations positively. However, the three target groups showed different predictors for the outcome measures.
Conclusion: It can be concluded that 10 years after the first study, callers are still very positive in their evaluation. However, the different
characteristics of the helpline are nowadays slightly more negatively judged, particularly by patients. The installation of the voice response
system (VRS) as well as the fact that people have more easily access to information about their disease might account for these differences in
Practice implications: To maintain the positive evaluations helpline educators as well as the VRS need to attune more to the different needs
and problems of the target groups and provide tailored information.
# 2005 Elsevier Ireland Ltd. All rights reserved.
Keywords: Cancer information service; Patients; Experience; Impact
Since 25 years, people in the Netherlands have the
possibility to contact the information helpline of the Dutch
Cancer Society. This helpline aims to increase knowledge
about cancer and decrease taboos and fears concerning
cancer. Trained oncology educators with a medical or
paramedical background provide psychosocial support and
information about cancer in a personal conversation, and
people can receivewritten information (e.g. brochures). The
helpline is open for the public during office hours and
additionally can be contacted 24 h a day for ordering
brochures. The primary target groups of the helpline are the
general public, patients and family or friends of cancer
patients. In 1994, a study evaluated the experiences and
impact of this helpline . Since the last study, the
information helplinewent through some changes. In order to
more efficiently provide callers with information and
support, a voice response system (VRS) was developed
and installed in 1995. The VRS substitutes a part of the
introduction and the part where people can order informa-
tion brochures. The present study was conducted in order to
assess experiences and impact of the Dutch national cancer
information helpline as well as assessing differences in
evaluation and impact with the 1994 Study.
Information helplines can generally be divided in two
groups. The most basic and least labour-intensive helplines
use tapes with recorded health messages [2–6]. The function
of these indirect helplines is to provide information and
communication is directed only one-way towards the caller.
Patient Education and Counseling 63 (2006) 215–222
* Corresponding author. Tel.: +31 43 3884005; fax: +31 43 3671032.
E-mail address: firstname.lastname@example.org (A. Reubsaet).
0738-3991/$ – see front matter # 2005 Elsevier Ireland Ltd. All rights reserved.
Specific questions of the callers are not directly answered.
Direct helplines use educators who can react directly to the
callers’ questions and reactions, resulting in interpersonal
communication [7–14]. Besides providing general informa-
tion, direct helplines also provide more personal and
individualised information as well as psychosocial support.
The Dutch information helpline is a combination of the two
types; since 1995, the helpline uses recorded messages
(VRS) as well as educators for more interpersonal
Earlier studies on cancer helplines show that three
major target groups can be distinguished, namely patients,
relatives and friends of patients, and the general public.
Cancer patients and relatives and friends are the largest
groups [1,7,8,13–16]. The large majority of the callers are
female, varying from 67%  to almost 80% [7,13,16–
18]. The mean age is relatively low and is often inversely
related to the age incidence of cancers [1,13,19]; i.e.
although the cancer incidence rises with age, the mean age
of the respondents is relatively low. Further, patients are
highest in age and the general public has the lowest age
[1,15,19]. People who contact information helplines
are mostly more educated than the average population
Several studies evaluated helplines. Overall satisfaction
with the helplines was reported by at least 90% of the
respondents [1,16,18,21,22]. Lechner and De Vries 
reported that most callers’ expectations were largely or
completely met. With respect to the emotional impact of the
call, research showed a decrease in tension and anxiety after
respondents’ call to the helpline [1,16,18–20,22]. Overall
satisfaction was predicted by the callers’ evaluation of the
received information and the communication skills of the
educators [1,16]. Lechner and De Vries  reported that for
the general public and relatives/friends, the received
information seemed to be the more important predictor,
whereas for patients the communication skills was most
important. Regarding the satisfaction of the caller’s
expectations, both communication skills and the received
information were significant predictors for all target groups.
Lastly, only the educator’s communication skills could
significantly predict the impact on anxiety for relatives/
friends and patients. McGuire’s Persuasion-Communication
Theory  assumes that successful communication is
dependent on several input factors within communication,
which are also important concepts within the integrated
model for exploring motivational and behavioural change
(the I-Change Model) [24,25]: the quality of the message or
to the present study, the message includes the information
about cancer provided to the callers; the channel or medium
is the telephone and the sources of communication are the
helpline educators with their communication skills. For the
present study, the outcome of successful communication is
defined as the overall satisfaction with the information
helpline or a decrease in anxiety or concern.
The first purpose of this paper is to describe the
differences between the three target groups (patients,
relatives/friends, and general public) regarding the input
factors (i.e. information, communication skills of the
educators, and telephone aspects) and the outcomes
(satisfaction, anxiety, and meeting expectations). The
second goal is to analyse the extent to which the outcome
measures for the three target groups are explained by the
different input factors.
To examine and evaluate experiences and impact of the
helpline, two measurements were used, which were
similar to the ones used by Lechner and De Vries .
First, during the actual call with the helpline, several
demographic data were recorded by means of a stan-
dardised computerized registration form. Callers were
asked about the target group to which they belonged,
gender and age, the type of cancer, and the stage of cancer
of the caller. These data were used to analyse significant
differences between responders and non-responders on the
Secondly, data were collected by means of self-
administered postal questionnaires. From December 2003
until March 2004, all callers from the groups patients,
friends/relatives and the general public were asked to
participate in the present study by completing a postal
questionnaire. The questionnaire consisted of the following
parts, which can be divided into input and outcome factors.
Several input factors were assessed:
Channel: Several telephone aspects were evaluated by
means of four items on 5-point scales, ranging from (?2)
very bad to (+2) very good. Callers were asked about the
accessibility of the helpline, the approachability of the
telephoneaseasy ordifficultfortalkingabout cancer,and
channel forgetting information about cancer(Cronbach’s
a = 0.64).
Message: Callers were asked how they evaluated the
information they received with three items using 5-point
scales ((?2) very bad to (+2) very good). The quality of
the information was assessed with regard to clarity,
usefulness, and overall quality (Cronbach’s a = 0.85).
Source: The communication skills of the educators were
assessed by means of seven questions on 5-point scales
ranging from (?2) very bad to (+2) very good. Callers
were asked how they evaluated the educators’ sincerity,
respect, amount of attention, expertise, supportiveness,
reassurance, and the ability to place oneself in the caller’s
position (Cronbach’s a = 0.85).
Demographic variables: Callers were asked about the
target group to which they belonged, their age, gender
(male = 1, female = 2), and level of education.
A. Reubsaet et al./Patient Education and Counseling 63 (2006) 215–222216
Evaluation VRS: Four questions were included to
evaluate the degree of pleasantness, user-friendliness,
annoyingness, and difficulty of the VRS using 5-point
Several outcome measures were assessed:
Overall satisfaction: One item measured the degree of
satisfaction with the overall service of the helpline
ranging from (?2) very unsatisfied to (+2) very
Experienced fear, tension, and concern: Three items
using 5-point scales ranging from (?2) great increase to
(+2) great decrease were included to assess the impact
on fear, tension, and concern. Callers were asked to
compare how they had felt after the call with how they
had felt before calling the helpline (Cronbach’s
a = 0.87).
Expectations: Callers were asked to indicate on 5-point
scales, to which degree the following expectations were
met (?2; not met at all; +2, completely met): to get
advice, medical information, practical information,
sympathy, help with problems, general information and
information tailored to the situation of the caller
(Cronbach’s a = 0.94).
2.1. Statistical analyses
Data were analysed using the ‘Statistical Package for
Social Sciences’ (SPSS) 11.5 for Windows. Differences
between the three target groups in the evaluation of
telephone aspects, the information callers received,
and educator’s communication skills were analysed in
one-way ANOVA’s using Tukey-HSD contrasts. Differ-
ences in the separate items were analysed using MANOVA
with post-hoc Tukey-HSD contrasts. Linear regression
analyses were conducted to examine relations between
demographic variables and the above-mentioned outcome
measures. In order to identify to what extent the input
factors (i.e. communication skills, information received,
and telephone aspects) explained the main outcome
anxiety, and the impact on meeting expectations) within
the three target groups, multiple linear regression analyses
were conducted per group, corrected for demographic
3.1. Characteristics of the sample and response
From December 2003 until March 2004, 1367 persons
called the Dutch cancer information helpline, of which 1128
callers (83%) agreed to participate in the present study by
completing a postal questionnaire. Of these 1128, 665
respondents returned the questionnaire, resulting in a total
response of 59%. Although we found no significant
differences in age, sex, or target group between responders
and non-responders, relatively more callers with an
upcoming treatment for their cancer responded to the
questionnaire (x2= 12, d.f. = 2, P < 0.01).
Patients were the largest group (N = 258; 39%), relatives
and friends accounted for 35% of the response (N = 232),
and 26% (N = 171) of the callers belonged to the general
public. The age ranged from 20 to 85, with a mean age from
51.3 years (S.D. = 13.2) and 78% of the respondents was
female. One-third of the callers had a higher level of
education (college or university degree) and 36% reported a
low level of education (e.g. primary school). Patients (mean
age 55.4) were significantly older than the general public
(mean age 49.2) and friends/relatives (mean age 48.5)
(F = 20.1, d.f. = 636, P < 0.001). Within the general public
the proportion female callers were the largest (88.8%)
whereas the proportion of males was the highest among
patients (31.4%) (P < 0.001).
3.2. Input factors: telephone aspects, received
information, and communication skills
The evaluation of the different telephone aspects
(i.e. accessibility, approachability, appropriateness, and
pleasantness) was positive (Table 1). The appropriateness
of the telephone as a channel for getting information
about cancer was evaluated most positively; 92% of the
callers judged this aspect positive. Callers rated the
approachability of the telephone as ‘‘least’’ positive; 5%
evaluated the telephone as being difficult for talking about
cancer. The target groups did not differ significantly in
their evaluation of the telephone as a medium for
information respondents received from the helpline, at
least 76% of all respondents evaluated this as (very)
positive. Patients evaluated the information significantly
less positive than the general public and relatives/
friends (Table 1). There were no significant differences
between the general public and relatives/friends. Sex
was the only demographic factor that was significantly
related to the evaluation of the information; females
judged the information as more positive (b = 0.11,
P < 0.05).
Almost two-third of all respondents evaluated the
(Table 1). Callers evaluated the amount of respect they
received as most positive (97%), followed by the amount
educator’s communication skills significantly more posi-
tive than patients, in particular with respect to the amount
of supportiveness and the ability to place oneself in the
caller’s position. Female callers evaluated the commu-
nication skills more positively than male callers (b = 0.09,
P < 0.05).
A. Reubsaet et al./Patient Education and Counseling 63 (2006) 215–222 217
3.3. Overall satisfaction
Most respondents were satisfied or very satisfied with the
information helpline (85%) and only a few callers were
dissatisfied (5%) with the helpline. The mean satisfaction
score was 1.16 (S.D. = 0.79), with a range from ?2 (not
satisfied) to+2(verysatisfied).Patients evaluatedtheoverall
quality significantly less positive than the general public and
relatives/friends(F = 8.04,
females were significantly more satisfied with the informa-
tion helpline (b = 0.10, P < 0.05) than men. Age and level
of education were not significantly related with overall
Although approximately 80% of the respondents eval-
the VRS as (very) annoying. Furthermore, one-third of the
callers evaluated the VRS as (very) unpleasant, but most
respondents (73%) found it (very) easy to use the VRS. The
general public evaluated the VRS as more pleasant than
P < 0.05).
d.f. = 628,P < 0.01)and
(F = 4.49, d.f. = 626,
3.4. Impact on anxiety
The impact of the information helpline on the respon-
dents was divided into the impact on the respondents’
amount of anxiety indicators measured by the level of fear,
tension and concern. Respondents were asked to compare
how they felt after the call with how they had felt before
calling the helpline.
In order to obtain an overall anxiety impact score
(Cronbach’s a = 0.87), a mean score of these three items
(tension, fear, and concern) was calculated (M = 0.40,
S.D. = 0.56, ranging from great increase (?2) to great
decrease (+2) in anxiety). The general public reported a
greater impact of the helpline on anxiety than patients and
relatives/friends (F = 5.0, d.f. = 590, P < 0.01). No sig-
nificant relations between demographics and the impact on
anxiety were found.
3.5. Meeting expectations
Respondents were asked to which degree expectations
concerning several aspects were met by calling the
information helpline. Callers’ expectations were largely or
completely met by most respondents, varying from 85% for
getting sympathy to 57% for getting medical information.
These different aspects were combined into one
expectation impact measure (Cronbach’s a = 0.94), with a
mean score of 0.65 (S.D. = 1.24, range not met at all (?2) to
completely met (+2)). Patients were significantly less
satisfied with the fulfilment of their expectations than the
general public and relatives/friends (F = 13.46, d.f. = 638,
P < 0.001) and females’ expectations were significantly
larger met than males’ expectations (b = 0.15, P < 0.001).
3.6. Predicting outcome: satisfaction and impact
Table 2 shows that overall satisfaction was predicted
differently within the three target groups, corrected for sex.
The explained variance ranged from 58% for the general
public, to 62% for relatives/friends to 66% for patients. For
all target groups the received information appeared to be the
best predictor of overall satisfaction, whereas telephone
A. Reubsaet et al./Patient Education and Counseling 63 (2006) 215–222218
Mean values and significant differences in evaluation of telephone aspects, information received and communication skills between the three groups general
public (GP), relatives/friends (R/F) and patients (P)
(GP, N = 171)
(R/F, N = 232)
(P, N = 258)
(P < 0.05)
Evaluation of telephone aspects
Evaluation of information
P < GP, R/F
P < R/F
P < GP, R/F
P < GP, R/F
Evaluation of communication skills
Amount of attention
Ability to place oneself in the caller’s position
P < R/F
P < R/F
P < R/F
P < R/F indicates that the mean value of P is significantly lower than the mean value of R/F in an ANOVA or MANOVA (for single items) using Tukey-HSD
contrasts (scores range from ?2 (very negative) to +2 (very positive)).
aspects were not a significant correlate of the general
With regard to anxiety, the input variables explained,
respectively, 11% (relatives/friends), 19% (general public),
and 26% (patients) of the impact on anxiety (Table 3). For
both the general public and the patients the educator’s
communication skills proved to be the best predictor of the
impact of the helpline on decrease of anxiety. For relatives/
friends, the information received was the only predictor of
the impact on anxiety, which was also a significant predictor
could not predict the impact on anxiety in none of the target
With respect to the impact of the helpline on meeting
expectations, for all target groups the information they
received proved to be the best predictor, followed by the
Telephone aspects could not predict the impact on meeting
expectations. The explained variance ranged from 53% for
the general public, to 56% for relatives/friends to 60% for
4. Discussion and conclusion
The present study assessed experiences with and impact
of the Dutch national cancer information helpline. Caller
demographics were comparable with other studies on
A. Reubsaet et al./Patient Education and Counseling 63 (2006) 215–222 219
Predictors of satisfaction for the general public, relatives/friends or patients
General public Relatives/friendsPatients
Betar Betar Betar
R = 0.76
d.f. = 4.132
Adjusted R2= 0.58
F = 45.55***
R = 0.78
d.f. = 4.196
Adjusted R2= 0.62
F = 78.71***
R = 0.81
d.f. = 4.217
Adjusted R2= 0.66
F = 104.64***
*P < 0.05.
***P < 0.001.
Predictors of impact on anxiety for the general public, relatives/friends, or patients
Beta rBetar Betar
R = 0.45
d.f. = 3.127
Adjusted R2= 0.19
F = 10.93***
R = 0.34
d.f. = 3.195
Adjusted R2= 0.11
F = 8.74***
R = 0.52
d.f. = 3.216
Adjusted R2= 0.26
F = 25.97***
*P < 0.05.
**P < 0.01.
***P < 0.001.
Predictors of impact on meeting expectations for the general public, relatives/friends, or patients
Betar Betar Betar
R = 0.73
d.f. = 4.128
Adjusted R2= 0.53
F = 35.50***
R = 0.75
d.f. = 4.196
Adjusted R2= 0.56
F = 63.17***
R = 0.78
d.f. = 4.216
Adjusted R2= 0.60
F = 81.08***
*P < 0.05.
**P < 0.01.
***P < 0.001.
measuring impact of information helplines. In most studies,
[1,7,8,13–16], women comprise the majority of the callers
[1,16,17,19], and patients have the highest age [1,15,19].
Callers evaluated the different telephone aspects (acces-
sibility, approachability, appropriateness, and pleasantness)
 found comparable findings. Although the evaluation in
the present study was very positive, the telephone aspects
were evaluated less positive than 10 years ago by patients
and relatives or friends. The general public did hardly
change in their evaluation of telephone aspects. Further-
more, the information from the helpline received by the
callers was also evaluated positively (clarity, usefulness, and
overall quality). The positive evaluation of the provided
information found in the present study is in line with the
findings of previous studies on telephone information
services [1,16,17,19,21,22]. Compared with 10 years ago,
patients and relatives/friends were less satisfied with the
provided information, whereas the general public evaluated
the provided information the same. Third, educator’s
communication skills were rated positive by a majority of
the callers; specifically, the amount of respect and attention
was evaluated as most positive. Both the Dutch study
conducted in 1994  as well as several other studies
[16,20,21] reported similar findings.
All target groups evaluated the impact of the information
helpline on overall satisfaction, anxiety, and meeting
expectations positively. These findings are in accordance
with previous studies, which also found very positive
evaluations regarding the overall satisfaction [1,16,21],
reduced fear or anxiety [1,16,19,20,22], and satisfied
4.1.1. Comparisons 1994 Study and 2004 Study
Both the study conducted in 1994  as well as the
present study reported similar findings. However, therewere
also some differences. In general, patients and relatives/
friends nowadays are less positive about certain educator’s
communication qualities, whereas the general public hardly
patients as well as their relatives and friends have become
more critical within the last decade. A possible explanation
for this finding may be that patients in general have become
more articulated, responsible, and making independent
choices regarding their own health . Another explana-
tion may be the introduction of the voice response system
(VRS), since particularly patients and relatives/friends
evaluated the VRS as unpleasant. The general public was
less critical in their evaluation of the VRS.
Although the results regarding the predictors of
satisfaction, anxiety, and meeting expectations were in line
with the study conducted in 1994 , there were some
differences. Both studies showed that for the general public
as well as for relatives/friends the information callers
received best explained overall satisfaction. Further,
although telephone aspects were highly correlated with
overall satisfaction, it did not prove to be a significant
correlate of satisfaction for all target groups. In contrast with
educator’s communication skills best explained satisfaction.
It seems that today’s patients mostly expect to receive
information and have less need for interpersonal feedback
compared to 10 years ago. Since patients have become more
health , it is conceivable that a shift has occurred in
patients’ needs towards more need for receiving information.
With regard to possible correlates of the impact on
First, whereas in the 1994 Study, no significant predictors of
changes in anxiety for the general public were found, in this
study the communication skills proved to be a significant
correlate for this target group. Further, for relatives/friends
different predictors proved to be the best correlate (1994:
communication skills, 2005: information received). In both
studies, there was a lack of predictive power from the three
input factors (telephone aspects, received information, and
communication skills). It is conceivable that other factors
(e.g. personality, severity of the disease) are important in
included in the present study.
Finally, in both studies for all target groups the
information callers received best explained the impact of
the helpline on meeting expectations. Although both studies
reported high correlations between telephone aspects and
the impact of the helpline on meeting expectations (1994:
r = 0.37; 2004: r = 0.34), in the present study telephone
aspects could not explain the impact on meeting expecta-
tions, whereas in the 1994 Study for patients these aspects
(accessibility, pleasantness, easy to approach) were sig-
nificantly more important for meeting their expectations.
The fact that the results in the present study showed high
correlations between the input factors (communication
skills, information received, and telephone aspects) and the
impact on meeting expectations has resulted in telephone
aspects having a non-significant contribution in the
explained variance. An additional explanation might be
that patients nowadays have access more easily to
information concerning their disease through for example
the Internetand mostpeopleperceivethe telephoneas avery
ordinary medium, which makes the telephone as a channel
of less importance for meeting their expectations.
Both studies report positive findings with respect to the
evaluation of the telephone aspects, provided information,
and the educator’s communication skills. However, callers
evaluated the different aspects of the information helpline
nowadays slightly less positive compared to 10 years ago
. There may be several explanations. First, in 1995 the
Dutch Cancer Society introduced a voice response system to
A. Reubsaet et al./Patient Education and Counseling 63 (2006) 215–222220
more efficiently provide callers with information and
support, which might have affected the evaluation of the
telephone aspects (e.g. accessibility, pleasantness). The
results showed that callers evaluated the functional/
cognitive aspects of the VRS (e.g. user-friendliness,
difficulty) very positively, whereas the emotional evaluation
was less positive; part of the callers rated the VRS as
unpleasant and annoying. Therefore, since the general
questions remained the same between both assessments, the
installation of the VRS might partly account for the
differences in evaluation of the information helpline
between the two studies. Secondly, nowadays there is more
information about cancer available and people use the
Internet more and more to obtain information about cancer
. This might make people more critical on demanding
for information that is of personal relevance.
4.3. Practice implications
After 10 years of experience with the Dutch cancer
information helpline, callers were still very positive in their
evaluation of the information. However, evaluations were
somewhat less positive compared to 10 years ago.
Particularly, patients seem to be more critical about different
aspects of the information helpline as well as more critical
about the fulfilment of their expectations. It is conceivable
that callers had expectations, which did not correspond with
the objectives of the information helpline. As a result, it is
important that helpline educators assess the different needs
and problems within the target groups extensively, followed
by providing tailored information. If a thorough insight
existsonfor examplethe type ofmedicalinformationcallers
want, this creates the possibility for the helpline to better
attune to this expectation (i.e. either to give more specific
information or to be clear on what kind of information
callers can and cannot expect from the helpline). Further,
since a small part of the callers evaluated the VRS as
unpleasant and annoying, the recorded messages could
become more attuned to the callers’ perceptions.
The study was funded by a grant from the Dutch Cancer
Society. The authors aregrateful to Cora Honing and Ronald
Knipping and the helpline educators for their help with this
project. We thank Margien Veling for her help in the data-
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