Volume 27, Issue 2 • Spring 2017 eISSN: 2368-8076
Volume 27, Issue 2 • Spring 2017
eISSN: 2368-8076
153
Canadian OnCOlOgy nursing JOurnal • VOlume 27, issue 2, spring 2017
reVue Canadienne de sOins infirmiers en OnCOlOgie
ABstrAct
The transition from the end of active treatment to survivorship holds
many challenges for women with endometrial cancer(WEC) and for
the organization of health services. The feasibility and acceptability of
implementing an individualized survivorship care plan(ISCP) at the
end of treatment are documented as potential solutions. The utility of
anISCP on three indicators (SUNS, FCRI, and HeiQ) was pre-tested
by comparing two groups ofWEC (control and exposed to theISCP).
TheWEC exposed to theISCP had fewer needs, a lesser intensity of
fear of cancer recurrence, and better health-related empowerment skills
three months after the end of treatment, as compared to the control
group. Obstacles of time, resources, and organization were raised.
Background: The transition from the end of active treatment to can-
cer survivorship is a time of imbalance and turbulence for women
with endometrial cancer (WEC). The transition to survivorship
continues to be uncoordinated and the need for information about
the side eects to watch for and the health risks is unmet. The imple-
mentation of an individualized survivorship care plan(ISCP) is
suggested as an information and communication tool that could be
a solution for facilitating the transition from the end of treatment to
the beginning of survivorship.
Research objective and method: To assess and document the fea-
sibility and acceptability of implementing an ISCP, qualitative
data were gathered fromWEC, oncology nurse navigators(ONN),
and family doctors. A pre-experimental research design with a
non-equivalent control group, an end of treatment (T0), and
a three-month follow-up (T1) allowed us to pre-test its utility
according to three indicators: (1)overall needs(SUNS); (2)fear of
cancer recurrence(FCRI); and (3)empowerment(HeiQ) accord-
ing to exposure toISCP (control versus exposed) and to the time of
measurement in the transition period (T0 versusT1).
Results: The sample was made up of 18WEC for the group exposed to
theISCP and 13WEC for the control group, 12general practitioners,
and two ONN. After ONN training, the ISCP completion time
varied between 60 and 75 minutes, and the meeting for providing
theISCP lasted 45–60minutes. TheWEC supported the idea that
meetings with theONN and theISCP were useful in meeting their
needs for information and support. The family doctors supported
its relevancy in favouring follow-up and better subsequent health-
care management, as well as in reassuring patients and avoiding a
sense of abandonment at the end of treatment. Comparing the group
exposed to theISCP versusthe control group, fewer reported needs
can be observed: information: 35% versus74%, p=.030; professional
and nancial: 6% versus19%, p=.057; access and continuity: 9%
versus25%, p=.078; support: 18% versus50%, p=.007, emotional:
13% versus28%, p=.044). Moreover, atT1, empowerment according
to the skill and technique acquisition sub-scale shows a higher trend
(M=75.00 (10.21) versusM=64.06 (10.67), p=.097). The level of
fear of recurrence remains above the clinically signicant score of13
for both groups at the two times of measurement.
Discussion: TheISCP is an informational tool that seeks to facili-
tate care-related communication and coordination between special-
ized and primary care. It is intended to facilitate the transition from
the end of treatment to survivorship and survivors’ commitment to
health-related empowerment behaviours. The feasibility and utility of
implementing anISCP are supported if additional professional, orga-
nizational, and nancial resources are specied and mobilized.
Key words: transition, end of active treatment, cancer
survivorship, individualized survivorship care plan
Gynecological cancers make up % of new cancers in
Canadian women (Canadian Cancer Society [CCS], ).
Endometrial cancer is the most frequent of these and is the fourth
most frequent cancer in women(CCS, ). The number of can-
cer survivors continues to grow(CCS, ) and survivorship is
recognized as a distinct phase in the continuum of care (McCabe
&Jacobs, ). Many studies report that the transition from the
end of treatment to cancer survivorship gives rise to challenges
for the majority of survivors (Hewitt, Greeneld, &Stovall, )
Assessment of the feasibility and acceptability,
and pre-test of the utility of an individualized
survivorship care plan (ISCP) for women with
endometrial cancers during the transition of the
end of active treatment to cancer survivorship
by Johanne Hébert and Lise Fillion
ABOut tHe AutHOrs
Johanne Hébert, LPN, MSc, PhD(c), Professor, Department of
Nursing, Université du Québec à Rimouski (UQAR)
Lise Fillion, LPN, PhD, Full professor, Faculty of Nursing,
Université Laval
Address for correspondence: Johanne Hébert, LPN, MSc,
PhD(c), Professor, Department of Nursing, Université du Québec
à Rimouski, Lévis Campus, 1595 Alphonse-Desjardins Blvd.,
Lévis,QC G6V0A6
Phone: 418-833-8800, ext. 3243
Email: johanne_hebert@uqar.ca
https://doi.org/10.5737/23688076272153163
154 Volume 27, Issue 2, sprIng 2017 • CanadIan onCology nursIng Journal
reVue CanadIenne de soIns InfIrmIers en onCologIe
and for women with endometrial cancer (Jones et al., ;
Nicolaije etal., ). Surviving cancer and its treatment comes
with physical and psychological side eects, as well as many
needs that must be taken into account (Grover etal., ; Hewitt
etal., ; Salz, Oenger, McCabe, Layne, &Bach, ).
A pivotal report by the Institute of Medicine(IOM) (Hewitt
etal., ) reports that the transition from care to the end of
treatment is often poorly coordinated and many survivors and
health professionals are not aware of the long-lasting and late
side eects or the heightened health risks associated with the ill-
ness and treatments. One of the report’s key recommendations
is to provide an individualized survivorship care plan(ISCP) to
each patient nishing his or her active treatment. TheISCP is
an informational tool for the survivor about the illness, treat-
ment, long-lasting and late side eects, follow-up, resources,
and health-promoting behaviours. It is also a useful tool for
health professionals. The ISCP facilitates coordination and
communication between the oncology team and generalists
(tertiary and primary care), as well as a shared management for
patient health (between the survivor, the specialized team, and
the family doctor). It is recommended theISCP be provided to
the patient close to the last treatment at an in-person meeting
and that a copy be sent to the family doctor (Daudt etal., ).
When theISCP is provided, attention should be paid to infor-
mation since this is a key factor of support (Nicolaije etal., ),
particularly at the end of treatment (Urbaniec, Collins, Denson,
&Whitford, ). At this phase in the continuum of care, endo-
metrial cancer survivors have multiple needs for information
(Greimel, Lahousen, Dorfer, Lambauer, & Lang, ) and are
dissatised with the information they receive (Hébert &Fillion,
; Jones etal., ; Nicolaije etal., ). Providing anISCP
at the end of treatment could be an opportune moment to oer
information and facilitate meeting the needs ofWEC. TheISCP
informs on the diagnosis, the treatments, the possible long-last-
ing and late side eects, and the resources available. These ele-
ments of information can reduce the ambiguity and distress
caused by this health situation, as well as foster a sense of con-
trol (Arraras et al., ). Studies report a link between needs
for information, symptoms of anxiety (Simard &Savard, ;
Urbaniec etal., ), and fear of recurrence (Brothers, Easley,
Salani, &Andersen, ; Greimel etal., ; Jones etal., ;
Salani, ) in cancer survivors. Providing an ISCP could
reduce uncertainty and have an impact on the fear of recurrence
often reported by WEC, thus contributing to a better manage-
ment of distress and to a sense of control (Faul etal., ). It
could also be a strategy to favour empowerment behaviours by
encouraging the survivors’ active involvement in their health.
More particularly, the ISCP fosters empowerment by inviting
survivors to ask questions of their healthcare team during fol-
low-up appointments (Faul etal., ; Watson, Sugden, &Rose,
), by raising awareness about the importance of adopting
health-promoting behaviours after the end of treatment (Sprague
et al., ), and by specifying an action plan to be imple-
mented according to specic directions (McCorkle etal., ).
Empowerment consists of one’s ability to manage one’s own
state of health, the possibility of collaborating with the healthcare
team, and accessing quality support care (McCorkle etal., )
Moreover, the implementation of an ISCP could improve
coordination of care and communication between caregivers
in this phase of the care trajectory (Hewitt et al., ; Hill-
Kayser etal., ; Jeord etal., ).
However, it is reported that few survivors have access to
anISCP (Rechis, Beckjord, &Nutt, ; Sabatino etal., )
and that only % of gynecological cancer survivors may ben-
et from such a plan (Brothers etal., ; Grover etal., ;
Sabatino etal., ; Salani, ).
Studies have documented the development of an ISCP for
women with breast cancer (Clausen etal., ; Dulko etal., ;
Smith, Singh-Carlson, Downie, Payeur, & Wai, ), for survivors
of colorectal cancer (Baravelli etal., ; Salz etal., ), and for
other types of cancer (Mayer, Gerstel, Leak, &Smith, ) based
on existing ISCPs. Some recommend personalizing theISCP to
better meet the complex needs of survivors (Haq etal., ). It
is also recommended to develop these plans in collaboration with
the multidisciplinary team and oncology outreach managers so
that the care processes and the organization’s resources be con-
sidered (Jeord etal., ; Mayer etal., ). To our knowledge,
a study has yet to document the development of anISCP that con-
siders the needs of endometrial cancer survivors and those of the
multidisciplinary team and the oncology outreach manager, as
well as the context and the available organizational resources.
Taking these recommendations into account, a personalized
ISCP for women with endometrial cancer(WEC) was rst devel-
oped in collaboration with WEC and their multidisciplinary spe-
cialized care teams in consideration of organizational resources
as the rst phase of the doctoral research of the primary author
(Hébert & Fillion, ). The second phase, presented here,
aimed to assess the feasibility and acceptability of theISCP, and
to pre-test its utility forWEC on three indicators retained for this
study (needs, distress/fear of recurrence, and empowerment). It
also aimed to document certain aspects of theISCP’s feasibility
and its acceptability by general practitioners as well as to have
theONN of the targeted clinics implement it.
MetHODOlOGY
Design and Objectives
The research was based on a sequential exploratory design
(Creswell & Plano Clark, ). This design included a rst
development phase that was the development and validation of
theISCP (Hébert & Fillion, ). The second phase was an
exploration of the implementation, and was made up of three
objectives: ()to document the feasibility of implementing an
ISCP; ()to assess the acceptability of theISCP; and ()to pre-
test its utility in meeting overall needs, reducing distress (fear
of recurrence), and fostering empowerment.
Qualitative and quantitative data were gathered from WEC
to meet these objectives. To meet the rst and second objec-
tive, an individual interview, guided by the study’s concepts
and variables, was carried out with two oncology nurse nav-
igators (ONN) from the oncology team involved in imple-
menting theISCP. For the second objective, a questionnaire,
accompanied by a cover letter presenting the study and a copy
of theISCP, was mailed to the family doctors of study partici-
pants. To meet the third objective, a pre-experimental research
design with a non-equivalent control group and two times of
155
Canadian OnCOlOgy nursing JOurnal • VOlume 27, issue 2, spring 2017
reVue Canadienne de sOins infirmiers en OnCOlOgie
measurement (T = end of treatment and T = three-month
follow-up) were used. The two groups ofWEC (exposed ver-
sus control) were compared for the three indicators: overall
needs, fear of recurrence, and empowerment.
Participants and Procedure
For qualitative data collection from WEC and ONN,
semi-structured guided interviews were conducted with dis-
cussion guides developed from the study’s conceptual models
(Meleis etal., ; Fitch, ). Allowing us to gather family
doctors’ perceptions of the relevancy and utility of the ISCP,
this questionnaire was accompanied by a cover letter present-
ing the study and a copy of theISCP, and was mailed to all the
general practitioners who had a patient participating in the
study. To compare the WEC according to conditions of expo-
sure, two intentional samples were constituted according to the
following inclusion criteria: ()having endometrial cancer and
having received adjuvant treatment (chemotherapy, radiation
therapy, or brachytherapy) alone or combined; () having n-
ished active cancer treatment; () having a family doctor; and
()being years of age or older. The two groups frequented the
same specialized care team. The rst—the control group—was
made up of WEC treated by this team before the introduction
of theISCP. The second—the exposed group—was made up of
WEC treated by this same team after theISCP was introduced.
The recruitment procedure was similar for the two groups. The
team’s two ONN specialized in gynecological cancers and a
nurse manager identied eligible patients and informed them
of the study. Those who were interested in receiving more infor-
mation were invited to meet the research student who informed
them of the protocol and invited them to take part in the study.
Those who accepted to participate in the study lled out a con-
sent form. The research procedure diered, however, accord-
ing to the conditions of exposure. The study received the ethical
approval of the university hospital centre in which it took place.
Conditions of Exposure
Two conditions of exposure were retained to pre-test the util-
ity of theISCP in meeting the three indicators (overall needs,
fear of recurrence, and empowerment) measured in WEC.
The rst condition was providing the ISCP (or the nursing
intervention). This was performed by theONN at the last treat-
ment. During this meeting, information about all the elements
contained in the ISCP was shared and WEC’s concerns about
post-treatment were discussed. The information that had to
be systematically covered when the ISCP was provided to the
patient was: symptoms to monitor; follow-up with the oncolo-
gist and generalist; the resources available; and behaviours of
empowerment during the survivorship period. The person-cen-
tred approach was retained (Street, Makoul, Arora, & Epstein,
) to provide the information according to the needs theWEC
expressed. The second condition was the transition period, which
corresponded with the two measurements (end of treatment[T]
and the systematic follow-up three months post-treatment[T]).
For the exposed group, the rst measurement occurred
when the ISCP was provided and the ONN distributed the
study questionnaires (SUNS, FCRI, and HeiQ). The sec-
ond measurement was conducted during the three-month
post-treatment follow-up appointment in an interview with the
research student. At both measurements, the questionnaires
were submitted to participants in self-addressed stamped
envelopes addressed to the research student.
For the control group, the sample was created in the
Phase of the doctoral research (Hébert &Fillion, ), car-
ried out before the ISCP was introduced and with the same
oncology team. A meeting was scheduled with the research
student at the end of treatment (T) or at the three-month
follow-up point (T). The interview looked specically at the
needs experienced during this transition period. The same
questionnaires as those submitted to this study’s exposed-
group participants were submitted in self-addressed stamped
envelopes addressed to the research student. No ISCP was pro-
vided to the participants in this group and no meeting was sys-
tematically held with theONN at the end of treatment.
Data Collection
Three instruments measured the three retained indicators
(overall needs, fear of recurrence, and empowerment). The
overall needs were measured by the Survivors Unmet Needs
Survey(SUNS) (Campbell etal., ). This measure includes
items divided into vesub-scales of needs. The short French-
language version used in this study was made up of items
(Propel Centre for Population Health Impact). Each of these
items was assessed on a Likert scale from (“All my needs
were met”) to (“Almost none of my needs were met”). A high
score indicates that needs were not met. Fear of recurrence was
measured by the Fear of Cancer Recurrence Inventory(FCRI)
(Simard &Savard, ). This questionnaire includes items
divided into seven sub-scales. In this study, the sub-scale of
severity, which contains nine items, was used. Each item is
assessed on a Likert scale from (“not at all”) to (“very much”).
The possible scope of the score varies between and . A high
score indicates severe fear of recurrence. For this sub-scale of
severity, a score of and above is clinically signicant and
shows a level of fear of recurrence for which further assess-
ment is recommended (Simard &Savard, ); this sub-scale
presents a satisfactory loyalty index (α de Cronbach = .).
Empowerment was measured by the Health Education Impact
Questionnaire(HeiQ) (Osborne, Elsworth, &Whiteld, ).
This study used a version by Maunsell etal. (2014), which mea-
sures empowerment and was made up of ve of the original
measure’s sub-scales. The French-language version (Canada)
was validated for people with cancer (Brunet etal., ). Each
item was assessed on a Likert scale from (“strongly disagree”)
to (“strongly agree”). A high score signies a high level of
empowerment behaviours. All scales were converted on a –
scale. The instrument shows a satisfactory loyalty index (α var-
ies between . and . according to sub-scale).
For the evaluation of the acceptability and feasibility
with WEC of the exposed group, discussion guides were
developed based on the central concepts of the theoretical
models retained for the doctoral study. These included Meleis,
Sawyer,Im, Hilnger Messias, and Schumacher’s () the-
ory of transition, the supportive care framework in oncol-
ogy (Fitch, ) and the feasibility study criteria put forth by
156 Volume 27, Issue 2, sprIng 2017 • CanadIan onCology nursIng Journal
reVue CanadIenne de soIns InfIrmIers en onCologIe
Bowen etal. (). Certain other aspects of Feinstein’s clinical
tool assessment framework () were also used.
For the interviews with theONN, a discussion guide was
developed according to the concepts and considerations pro-
posed by Bowen etal. () as feasibility study criteria, and
by Feinstein () for the development of clinical tools. These
same concepts and considerations guided the development of
the questionnaire to collect the perceptions of family doctors.
This questionnaire had six open questions on the relevancy,
utility, and content of the ISCP, and space for comments.
These frameworks and the concepts guiding the development
of the discussion guides and the questionnaires for family doc-
tors are presented in Table.
Data Analysis Plan
These descriptive statistical data were carried out to describe
WEC’s socio-demographic and clinical characteristics (demo-
graphic and medical variables) according to each group (control
or exposed). For the feasibility and acceptability with WEC and
ONN (objectives and ), the analysis of qualitative data was car-
ried out according to the Miles andHuberman () approach.
Individual interviews were self-recorded in digital format and
transcribed in full. The data were organized and coded using
the NVivo software. Qualitative data generated by the ques-
tionnaires for family doctors were also analyzed according to a
thematic approach. The emerging categories were grouped by
the themes and reported in percentage of occurrences.
Table1: Framework and concepts retained to guide the collection, analysis, and interpretation of qualitative data
Conceptual frameworks
Participants Concepts/Dimensions
Theory of Transition
Meleis etal. (2000)
Supportive Care Framework
Fitch (1994)
WEC Needs in the survivorship period
Physical, informational, emotional, psychological
Conducive and restrictive conditions for transition
Preparation for transition from the end of treatment and knowledge
Adaptation to change
Adaptation strategies for preparing the post-treatment
How we design feasibility studies
Bowen etal. (2009)
WEC Acceptability
Reactions to the ISCP: satisfaction, perceived relevancy, intention to use
Practical aspects
Facility of use and skill
Pre-test of utility
Facilitates the transition and meets needs
Health professionals
(ONN and family doctors)
Acceptability
Reactions to theISCP: satisfaction, perceived relevancy, intention to use
Implementation (ONN only)
Implementation of the ISCP (success/failure), quantity and types of resources necessary
Practical aspects
Facility of use and skill
Assessing the sensitivity of a clinical tool
Feinstein, (1987)
Health professionals
(Family doctors)
Goal of the tool
What is the ISCPfor? For whom is it relevant?
Understandability
Simplicity of the tool and clear content
Validity of the content
Exhaustive and relevant content
Facility of use
Time required for use
6
7
8
9
10
11
12
1
/
12
100%
