=Paper=
{{Paper
|id=Vol-1574/paper9
|storemode=property
|title=Information Given to Patients Undergoing Nuclear Medicine Procedures
|pdfUrl=https://ceur-ws.org/Vol-1574/paper9.pdf
|volume=Vol-1574
|authors=Geir A. Pedersen,Liv I. Stenstad,Andreas D. Landmark,Berit Brattheim
|dblpUrl=https://dblp.org/rec/conf/pahi/PedersenSLB15
}}
==Information Given to Patients Undergoing Nuclear Medicine Procedures==
https://ceur-ws.org/Vol-1574/paper9.pdf
Information Given to Patients Undergoing Nuclear
Medicine Procedures
Geir A. Pedersen1, Liv I. Stenstad1, Andreas D. Landmark2, Berit Brattheim3
1 Operating Room of the Future, St. Olavs Hospital, Trondheim, Norway
2 SINTEF Technology & Society, Trondheim, Norway
3
Sør-Trøndelag University College, Trondheim, Norway
Abstract. In this study, we have examined the information given to
patients whom are undergoing nuclear medicine procedures – and in
particular the information on radiation and exposure. We collected the
written information provided prior and during the examination and
conducted a small survey amongst patients on the information given.
The main findings show that as these patients are sources of radiation to
their surroundings, information about this should be made available for
the patients in order to make the necessary precautions.
1 Introduction
Patients have a basic right to information about their illnesses, treatments and
management [1]. This also includes information about possible risks and side effects.
Advances in technology for both diagnosis and treatment combined with increased
specialization, may challenge the balance in informed and shared decision-making,
and the balance of rights and responsibility between the medical professional and the
patient.
At the same time, the role of the patient is evolving. The availability of information
and information technology has created new possibilities and relations between the
health service and its users [2]. Patients are now also used to finding information in
source and voices outside the regulated realm of the health service. As such, it is
meaningful to discuss a “shift in the role of the patient from passive recipient to active
consumer of health information” [3]. Patients search out information about their
specific medical conditions for several reasons, including “for reassurance or because
of dissatisfaction with the amount of detailed information provided by the health
professional during the encounter” [ibid].
From the perspective of the health professional, providing information is also an
act of balancing between a reasonably informed patient and not wishing to cause
unnecessary fright or concern about upcoming treatment or prospective outcome.
However, studies show that “Patients very satisfied with their information had
received the largest amount of information”[4]. At the same time, an American study
of 8 major sources of patient education material on radiation safety show that we fail
to appropriately exploit these modern information channels. Their literature review
Copyright © 2016 by the paper's authors. Copying permitted for private and academic purposes.
In: G. Cumming, T. French, H. Gilstad, M.G. Jaatun, E.A A. Jaatun (eds.):
Proceedings of the 3rd European Workshop on Practical Aspects of Health Informatics
(PAHI 2015), Elgin, Scotland, UK, 27-OCT-2015, published at http://ceur-ws.org
82
showed that all of the 45 identified articles failed to meet the recommended level of
readability for patient information [5].
Patients undergoing Nuclear Medicine (NM) procedures require specific and
tailored information [4]. More specifically, they require information about their
condition, information about the diagnostic or therapeutic procedure they are about to
undergo, and lastly information about the fact that the patient can act as a radioactive
source and constitute a dose and contamination hazard to their surrounding for some
time after their procedure. The information must be provided in a format that is easily
understood by the patient and is appropriate to the hazard presented. Hospital nuclear
medicine departments are known to produce very varied instructions to patients[6].
The understanding of radiation and nuclear medicine procedures is not described in
detail in research – and there is a need for further research into these concepts both for
patient information, but for appropriate information to staff and professionals that
come into contact with NM patients in other parts of the hospital. We have previously
investigated the radiation from NM patients to their surroundings [8], and found that
while the amount of radiation is small, current practices are not necessarily based on
evidence-based evaluations. Better information and education of both patients and
staff seems beneficial.
In Norway, the official recommendations from the Norwegian Radiation Protection
Authority on nuclear medicine[7], clearly states that at the beginning of the treatment
plan a whole range of questions concerning exposure to the surroundings should be
covered. Individual counseling both oral and written of the patient and their kin
should cover daily activities and how to reduce the risk of exposure to others where
appropriate. The aim of this study is therefore to capture patient perspectives on the
received information about radiation as well as to investigate current hospital practice
on this issue.
2 Material and Method
Health care setting: The nuclear medicine center located at a university hospital
owned by one of the four Norwegian Regional Health Authorities. The hospital’s
catchment area is approximately 700 000 people.
Study design: A mixed-method approach with use of a quantitative questionnaire
accompanied by a qualitative review of practice documents.
Data collection: The questionnaire was handed over to 40 patients undergoing a
nuclear medicine examination in the period February – March 2013 and recorded data
on 1) how and what information the patient received from the hospital before the
actual examination, and 2) patient satisfaction with received information as well as
their perspective on how such information may be mediated. In addition, the patient
information leaflets about nuclear radiation precautions (i.e. the information intended
to be distributed to patients) were collected from 7 hospitals, of which one hospital
was Danish.
Data analysis: Simple descriptive statistic was applied to describe the features of the
questionnaire dataset. This was accompanied by a qualitative content review of the
collected leaflet, for which the focus was on information about radiation precaution
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related to pregnancy, children/next of kin and other people. Authors 1 and 2 did the
analysis and the interpretation of the data.
Ethical aspects: Informed consent was obtained from the participants, and they were
assured that questionnaire and document data would be treated confidentially and
were guaranteed anonymity in the presentation of findings. No personnel or health
information data were collected. The study was approved by the hospital's research
board, and the ward manager.
3 Results
37 out of 40 patients (93%) completed and returned the survey within the given
deadline. Figure 1 shows that 14 of the 37 patients (38%) were informed orally by the
nuclear medicine department about radiation. 15 of the patients had not received any
information in advance. 6 Patients say they have received information in advance by
an information letter sent from the nuclear medicine department.
A: Information was sent
to me in advance
B: I was informed orally
C: I did not receive any
information
D: I do not know
Figure 1. Information given from the nuclear medicine department to the
patient.
Figure 2 shows that 28 of 37 patients (76%) had not been informed by the doctor who
referred the patient to the nuclear medicine examination. 6 patients have been
informed verbally by the physician.
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A: Information was sent
to me in advance
B: I was informed orally
C: I did not receive any
information
D: I do not know
Figure 2. Information from the prescribing physician regarding radiation.
Figure 3 shows that when it comes to the desired way to get information, 17 (46%)
answer that they want to get information in the notice letter, while 13 (35%) will
prefer the information given orally. Only two of the subjects want the information via
the Internet.
A: Orally
B: Information should be
placed in the summons letter
C: I prefer to read
information at the
department upon arrival
D: I prefer to read
information on the Internet
E: I do not know
Figure 3. In what form the patient would like to receive information.
Figure 4 shows that 20 (54%) of those surveyed believe they have received enough
information about the survey, while 11 (30%) think they have not got enough
information. 6 (16%) do not know.
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A: Yes
B: No
C: I do not know
Figure 4. The answers to the question: “do you think you have received
enough information?
As for the information hospitals give to this patient group by letter, all seven hospitals
(Six Norwegian and one Danish hospital) send out general information as well as
specific information related to the particular procedure. This includes information
about radiation as well as which precautions the patient should undertake on a general
basis.
However, concerning patient precaution when it comes to how they should keep clear
of pregnant woman/children/others, Table 1 shows that there is only one hospital that
lists such precautions in their information leaflet related to the three common NM
examinations; skeletal scintigraphy, octreotide scintigraphy and MUGA.
Table 1. Whether or not the hospitals give their patient information regarding
radiation comparing three common nuclear medicine examinations. One hospital
give specific information about how far away the patient should keep clear of
pregnant woman and children, and for how long.
Examination
/ Hospital 1 2 3 4 5 6 7
Sceletalscint. NO NO NO Yes NO NO NO
Octreotidscint. NO NO NO Yes NO NO NO
MUGA NO NO NO NO NO NO NO
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4 Discussion
As shown in the results (Table 1), only 1 hospital out of 7 hospitals (= a Norwegian
one) provided information about restricting contact with children and pregnant
women (even though this is explicitly mentioned in the recommendations from the
Norwegian Radiation Protection Agency).
As we saw, many patients indicate that they did not receive any written
information prior to the day of the examination. However, according to our survey the
hospitals do provide general information. In this general information there are
sections on radiation safety and precautions. We speculate that this indicate that half
of our study population does not read everything they receive. If so, this raises several
questions around the form of communication: the readability of the content and
whether or not the information is at an appropriate level for the patient’s
comprehension.
Similarly, Figure 2 shows that most patients did not receive any information about
radiation precautions from the referring physician. This was expected as it is the
hospital’s job to distribute this type of information, Still 2 of 37 respondents replied
that they did receive information about radiation precautions. This raises some doubt
with respect to the comprehensibility of the posed question. Respondents were
divided in their view between preferring information to be distributed in the letter
from the hospital and whether or not they would prefer oral information at the
department. This may reflect that information provided on the day of the injection is
better remembered than the information received potentially some time prior to the
examination day. During our period of data collection, we observed that some patients
brought their information letters to the hospital at the day of their examination, which
in turn created an opportunity to provide all the necessary information written as well
as repeating the key parts verbally on the day. Based on observations, our impression
is that the written communication has potential to contain more information, but again
tailored to the specific needs of the patients. This ranges from practical issues such as
where and when, but also to more information about radiation, restrictions and
precautions that should be observed after the injection of radioactive material. We
also noticed that our informants did not seem to be afraid of more information, but
rather saw it as important and necessary.
Comparing this with the literature on information to patients, especially for patients
undergoing nuclear medicine procedures, our survey is inline with what similar
studies have shown elsewhere[4-6]. Research has shown that the radiation from these
patients to the surroundings are close to negligible [8]. It is therefore close to a
paradox that the information – and knowledge of – about radiation and exposure both
for staff, patients and their kin is thin. One could argue that this is unimportant given
the context and the relatively harmless dose of radiation, but at the same time there is
a basic right to information to be observed as well as a general need for reinforcing
the ALARA (“as low as reasonably achievable”) principle in a time where the average
patient is exposed to an increasing amount of radiation through diagnostics and
therapy.
Further research could involve bigger patient groups, other types of nuclear
medicine examinations, other types of radiopharmaceuticals and a larger amount of
patients/hospitals.
87
As well, one hospital changed their information practice resulting from our
research findings. They now inform collaborating departments about the patient
radiation as a way to assure them that it is not harmful. One might argue that more
general knowledge about radiation inside the hospital walls could break down some
of the undue anxiety and wrong assumptions toward nuclear medicine examinations.
One of the authors of this paper has now focused her master’s degree towards
patient information related to radiography.
4.1 Strengths and weaknesses
The biggest challenge in this study was to ascertain how much information the
patients received without biasing them through at the same time informing them. The
premise for our investigations was measurement of the radiation from the patients that
made it necessary to inform them about the study and through that also the fact that
they did act as a radiation source. For some, this came as news to them – which
indicate that this was not something they had been informed of or had not
comprehended from the information given to them. This means that it is not possible
to reliably distinguish between the information given to them outside the scope of our
study and the informed consent obtained in the study (which contained necessary
information).
Concerning question 4 (Figure 4), 20 (54%) patients respond that they have
received good enough information, and 11 (30%) that they did not. It is possible that
their interpretation confuses the details about the procedure and radiation protection in
general. This of course impedes the interpretation of our results.
There is also a potential confounder in that patients may receive different
information based on whether they were referred from their general practitioner or as
in-patients from a different ward. We have chosen to focus on their subjective
experience and how and through which channels they would prefer to receive
information. As such not a test of the information they have understood, but their
subjective experiences. This could of course be biased by the respondents wish to
provide “socially acceptable answers”, i.e. a social desirability bias to appear
favorable to the surveyor. Additionally, the “power of questions” is an inherent
confounder, the questions posed to the informants also influences how they respond.
Due to the size of the study, there were only a limited pilot of the survey. So there is
an underlying challenge in interpretation of the responses.
5 Conclusion
Patients have a fundamental right to information about their own illness, examinations
and, treatment; including side effects and risk factors. As this study has shown, the
nuclear medicine patients do not receive the information they are entitled to. This is a
balancing act between providing information enough information, but at the same
time not overwhelming or causing unnecessary worries in the patient population.
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In order to truly provide patient-centered care, attention to supporting activities
such as patient information is important in order to change the patient experience.
Today, information is available everywhere, on the internet or in more traditional
channels, but it differs to which extent patients seek out information – as well as it
varies how much of the given information is comprehended by the individual patient.
Acknowledgments We wish to thank the health professionals and the patients who
were willing to participate in the study. We would like to thank Professor Hans Olav
Myhre and Jan Gunnar Skogås at Operating Room of the Future, St. Olavs Hospital,
who provided all-round good advice during this research as well as feedback on this
manuscript. We would also like to thank Marianne L. Stokkan and Jeanett Hoff
Antonsen at the Nuclear medicine dept. at St. Olavs Hospital for invaluable
professional help.
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6 References
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2.7.1999 [1.1.2004] Downloaded from:
http://www.ub.uio.no/ujur/ulovdata/lov-19990702-063-eng.pdf
2. Tjora, A. H., & Sandaunet, A. G. (Eds.). (2010). Digitale pasienter. Gyldendal
akademisk.
3. McMullan, M. (2006). Patients using the Internet to obtain health information:
how this affects the patient–health professional relationship. Patient education
and counseling, 63(1), 24-28.
4. Adler, J., Paelecke-Habermann, Y., Jahn, P., Landenberger, M., Leplow, B., &
Vordermark, D. (2009). Patient information in radiation oncology: a cross-
sectional pilot study using the EORTC QLQ-INFO26 module. Radiat Oncol, 4,
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8. Stenstad, L. I., Pedersen, G. A., Landmark, A. D., & Brattheim, B. (2014).
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