%'8./3-943#3/;+78/9>!).4414,+*/)/3+%'8./3-943#3/;+78/9>!).4414,+*/)/3+
/-/9'1422438+)0+7/-/9'1422438+)0+7
:77+39>+'7:(8 5+3))+88:(1/)'9/438
>3+)414-/)43)414->5'9/+395+785+)9/;+8'3*034<1+*-+43>3+)414-/)43)414->5'9/+395+785+)9/;+8'3*034<1+*-+43
'*;'3)+)'7+51'33/3-6:'1/9>/2574;+2+39/39+7;+39/43'*;'3)+)'7+51'33/3-6:'1/9>/2574;+2+39/39+7;+39/43
!'7'.:+5+3(+)0+7
%'8./3-943#3/;+78/9>!).4414,+*/)/3+/3!94:/8
!45./'+</8
%'8./3-943#3/;+78/9>!).4414,+*/)/3+/3!94:/8
'70$'1+39/3+
%'8./3-943#3/;+78/9>!).4414,+*/)/3+/3!94:/8
'7-:+7/9+'1/84:1
%'8./3-943#3/;+78/9>!).4414,+*/)/3+/3!94:/8
7+2'1".'0+7
%'8./3-943#3/;+78/9>!).4414,+*/)/3+/3!94:/8
!++3+=95'-+,47'**/9/43'1':9.478
4114<9./8'3*'**/9/43'1<4708'9.9958*/-/9'1)422438<:891+*:4'&
'794,9.++*/)/3+'3*+'19.!)/+3)+8422438
1+'8+1+9:8034<.4<9./8*4):2+39(+3+@98>4:
+)422+3*+*/9'9/43 +)422+3*+*/9'9/43
:+5+3(+)0+7!'7'.+</8!45./'$'1+39/3+'70'1/84:1'7-:+7/9+".'0+77+2'1
'-+2'333*7+' )4:79'741>3:.'9.+7/3+4<+11'99.+<:9).';/*'3*
:740//3*8'>>3+)414-/)43)414->5'9/+395+785+)9/;+8'3*034<1+*-+43'*;'3)+)'7+51'33/3-
6:'1/9>/2574;+2+39/39+7;+39/43>3+)414-/)3)414-> +54798
.9958*/-/9'1)422438<:891+*:4'&
"./85+3))+88:(1/)'9/43/8(74:-.994>4:,47,7++'3*45+3'))+88(>9.+5+3))+88:(1/)'9/438'9
/-/9'1422438+)0+79.'8(++3'))+59+*,47/3)1:8/43/3:77+39>+'7:(8(>'3':9.47/?+*
'*2/3/897'9474,/-/9'1422438+)0+747247+/3,472'9/4351+'8+)439')9;'3'2<:891+*:
:9.478:9.478
!'7'.:+5+3(+)0+7!45./'+</8'70$'1+39/3+'7-:+7/9+'1/84:17+2'1".'0+73*7+'
'-+2'33'741>3)4:79'9.+7/3+:.'99.+<4<+11';/*:9).'3*/3*8'>
:740/
"./845+3'))+885:(1/)'9/43/8';'/1'(1+'9/-/9'1422438+)0+7.9958*/-/9'1)422438<:891+*:4'&
Gynecologic Oncology Reports 43 (2022) 101060
Available online 5 August 2022
2352-5789/© 2022 The Authors. Published by Elsevier Inc. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-
nc-nd/4.0/).
Research Report
Gynecologic oncology patient perspectives and knowledge on advance care
planning: A quality improvement intervention
Sarah P. Huepenbecker
a
,
1
, Sophia Lewis
b
, Mark C. Valentine
a
, Marguerite L. Palisoul
c
,
2
,
Premal H. Thaker
c
, Andrea R. Hagemann
c
, Carolyn K. McCourt
c
, Katherine C. Fuh
c
,
Matthew A. Powell
c
, David G. Mutch
c
, Lindsay M. Kuroki
c
,
*
a
Department of Obstetrics and Gynecology, Washington University School of Medicine, St. Louis, MO, United States
b
Washington University School of Medicine, St. Louis, MO, United States
c
Division of Gynecologic Oncology, Washington University School of Medicine, St. Louis, MO, United States
ARTICLE INFO
Keywords:
Advanced care planning
Communication
Gynecologic cancer
Quality Improvement
Implementation
ABSTRACT
Objectives: Assess and improve advance care planning (ACP) awareness and uptake among gynecologic oncology
patients.
Methods: Using a quality improvement Plan-Do-Check-Act framework, we completed a single institution needs
assessment and intervention. The needs assessment was a 26-question survey assessing baseline ACP knowledge
and preferences of gynecologic oncology patients. We used this survey to implement an outpatient intervention
in which patients were offered ACP resources (pamphlet, discussion with their gynecologic oncologist, and/or
social work referral). We conducted a post-intervention survey among patients who had and had not received
ACP resource(s) to assess whether our intervention increased ACP knowledge, discussions, or uptake.
Results: Among 106 patients surveyed in the needs assessment, 33 % had ACP documents, 26 % had discussed
ACP with a physician, and 82 % thought discussing ACP was important. The majority preferred these conver-
sations in the outpatient setting (52 %) with their gynecologic oncologist (80 %) instead of nurses or trainees. In
the intervention, 526 patients were offered ACP resources. Compared to women who did not receive resources (n
= 324), patients who received ACP resource(s) (n = 202) were more likely to have ACP discussions with their
gynecologic oncologist (38 % vs 68 %, P = 0.001) and had greater prociency regarding how to create ACP
documents (median score 5/10 vs 8/10, P = 0.048), although they were no more likely to have ACP documented
in their electronic medical record (27 % vs 9 %, p = 0.08).
Conclusions: ACP uptake among gynecologic oncology patients is low, but ACP discussions with an oncologist
during outpatient visits are important to patients and improve their knowledge regarding completing ACP
documents.
1. Introduction
Advance care planning (ACP) allows patients to make decisions
about healthcare and end-of-life preferences and document their de-
cisions in forms such as advance directives, living wills, health care
proxy forms, do-not-resuscitate orders, and physician-orders for life-
sustaining treatment. Cancer patients value effective communication
and information surrounding ACP (Back et al., 2008; Falloweld and
Jenkins, 1999; Emanuel et al., 1991; Kubi et al., 2020). Moreover, when
ACP is addressed and implemented, outcomes include greater quality of
communication, family satisfaction, concordance between patient
preferences and healthcare interventions, and quality of end-of-life care
(Houben et al., 2014; Matsuoka et al., 2018; Detering et al., 2010). The
American Society of Clinical Oncology’s Quality Oncology Practice
* Corresponding author at: Department of Obstetrics and Gynecology, Division of Gynecologic Oncology, Washington University School of Medicine, 660 South
Euclid Avenue, Mail Stop 8064-37-905, St. Louis, MO 63110, United States.
E-mail address: [email protected] (L.M. Kuroki).
1
Current afliation: Department of Gynecologic Oncology & Reproductive Medicine, The University of Texas MD Anderson Cancer Center, Houston, TX, United
States of America.
2
Current afliation: Hartford HealthCare Medical Group, Hartford, CT, United States of America.
Contents lists available at ScienceDirect
Gynecologic Oncology Reports
journal homepage: www.elsevier.com/locate/gynor
https://doi.org/10.1016/j.gore.2022.101060
Received 26 May 2022; Received in revised form 31 July 2022; Accepted 1 August 2022
Gynecologic Oncology Reports 43 (2022) 101060
2
Initiative recommends documenting an advance directive and/or ACP
discussions by the 3rd ofce visit (ASCO’s Quality Oncology Practice
Initiative, 2021). However, cancer patients often lack ACP knowledge
and documentation, even when terminally ill (Kubi et al., 2020; Kish
et al., 2000). This gap may arise from lack of patient knowledge about
the prognosis or disease natural history, anxiety surrounding end-of-life
issues, or poor communication between patients and providers (Back
et al., 2008; Barnes et al., 2012; Heyland et al., 2013; Chandar et al.,
2017). Furthermore, even patients with knowledge of ACP often lack
formal ACP documents (Heyland et al., 2013; Temel et al., 2010; Brown
et al., 2016). The literature specic to gynecologic oncology populations
regarding ACP knowledge and uptake is limited, but suggests a gap
between patient-reported importance of ACP and ACP document
completion rates (Brown et al., 2016).
Before our study, our institution had no formalized pathway to
screen and educate patients regarding ACP or to track ACP discussions
or documentation. Patients could be referred to social work for ACP, but
only if providers recognized the need to make this referral. Moreover,
we did not know the magnitude of the gap between patient-perceived
importance of ACP and completed ACP documents among gynecologic
oncology patients at our institution. Brown et al. described gynecologic
oncology patient factors associated with decreased rates of ACP
completion (Brown et al., 2016) and developed a scale to gauge patient
readiness to discuss ACP (Brown et al., 2017). Although research in
other medical disciplines suggests that the most effective methods of
increasing ACP completion include informative material, conversations
during clinical visits, and assistance with ACP forms (Tamayo-Vel
´
azquez
et al., 2010; Bravo et al., 2008), no such studies have been conducted
specically in gynecologic oncology.
To address these gaps, we conducted a single-institution quality
improvement (QI) project, based on the Plan-Do-Check-Act (PDCA)
model (Science of Improvement: Testing Changes, 2021), to assess and
improve ACP discussions and documentation. First, we completed a
baseline needs assessment to gauge ACP awareness among gynecologic
oncology patients and identify their preferences for discussing ACP. We
then used these data, along with evidence-based strategies to increase
completion of ACP documents (Tamayo-Vel
´
azquez et al., 2010; Bravo
et al., 2008), to develop and implement an intervention to improve
patient knowledge and completion of ACP documents. Our primary
outcome in the intervention was patient self-report of having discussed
ACP with their gynecologic oncologist. Secondary outcomes included
differences in ACP knowledge and completion of ACP documents be-
tween those who did and did not receive the intervention.
2. Materials and methods
2.1. Ethical approvals and inclusion and exclusion criteria
Before initiating the study, the Washington University Human
Resource Protection Ofce reviewed the protocol and granted the
project a Quality Improvement human subjects exemption and waived
written informed consent. For the needs assessment phase, patients were
eligible if they were 18 years of age or older, had a history of primary
biopsy-conrmed gynecologic malignancy (cervical, endometrial, fal-
lopian tube, ovarian, peritoneal, vaginal, or vulvar), were hospitalized
on the Gynecologic Oncology service, and were established patients
(dened as having one or more documented outpatient clinic visits) of
the Gynecologic Oncology Division in the Washington University in St.
Louis Department of Obstetrics & Gynecology. Patients were excluded if
they had benign pathology, lacked English reading comprehension or
uency, were admitted for planned surgery, chemotherapy, or radiation
treatment, or if they had been transferred to the service from an Inten-
sive Care Unit. For the intervention phase of the study, patients were
eligible if they met the inclusion criteria above and had not participated
in the needs assessment survey and were presenting to the outpatient
clinic for pre-chemotherapy, surveillance, or problem visits.
2.2. Data collection
Clinical data abstracted from the participant’s electronic medical
record included age; race; religious afliation; body mass index; medical
comorbidities; tobacco use; primary cancer site; cancer histology, grade,
and stage; date of cancer diagnosis; treatment(s) received (surgery,
chemotherapy, radiation, hormonal therapy); disease recurrence; cur-
rent treatment; prior palliative care or hospice consultations; vital sta-
tus; and ACP documents uploaded into the electronic medical record
(EMR). These clinical data and patients’ survey answers were all entered
into Research Electronic Data Capture (REDCap), a secure web appli-
cation for building and managing online data (Harris et al., 2009).
2.3. Baseline ACP knowledge and needs assessment
Eligible patients admitted to the Gynecologic Oncology service be-
tween June 2017 and February 2018, were approached and asked to
complete a 26-question needs assessment survey (Fig. 1), which
included the following: whether the patient had current ACP documents
and whether they had given a copy to their healthcare provider; self-
rating of their current state of health; true/false and multiple choice
questions regarding baseline ACP knowledge; yes/no and multiple-
choice questions regarding awareness of and prior discussions with
healthcare providers about ACP; importance of discussing ACP (on a
Likert scale of 0–5); preferences for discussing ACP (multiple choice);
and whether completing the survey changed their willingness to discuss
ACP. If patients reported they did not have ACP documents, they were
asked to describe why. The survey was designed with input from the
Gynecologic Oncology Division to assess the prespecied study out-
comes, with questions about ACP knowledge based on our institutional
ACP informational pamphlet entitled “Advance Directives” (BJC Crea-
tive services, Bender printing) (Supplemental 1).
2.4. ACP intervention
To implement and assess our intervention, we used the Plan-Do-
Check-Act (PDCA) framework. We designed an intervention to address
ACP and offer ACP resources (“plan”), offered this intervention to all
patients at their outpatient gynecologic oncology visit (“do”), and con-
ducted a post-intervention survey to determine whether patient ACP
knowledge or behavior differed between those who did and did not
receive ACP resources (“check”). We are now using the resulting data to
change procedures in the division and plan future PDCA cycles (“act”).
(Science of Improvement: Testing Changes, 2021).
The intervention was implemented between March and May 2019,
(Fig. 1) and was based on two systematic reviews which identied the
success of clinical discussions, written materials, and assistance with
ACP forms as successful means to increase ACP completion. (Tamayo-
Vel
´
azquez et al., 2010; Bravo et al., 2008) The intervention was as fol-
lows. First, at the time of check-in for their outpatient appointments in
our gynecologic oncology clinic, all eligible patients were given a four-
item questionnaire asking whether they had completed ACP documents
and which, if any, of three ACP resources they desired at their
appointment: discussion about ACP with their primary gynecologic
oncologist, an ACP informational pamphlet entitled “Advance Di-
rectives” (BJC Creative services, Bender printing), or social work
referral. Second, the patient’s primary gynecologic oncologist reviewed
the questionnaire and offered the preferred ACP resource(s) during the
appointment. ACP resources were offered to any patient who requested
it, regardless of whether or not they already had ACP documents. Third,
providers documented on the questionnaire which resources, if any, had
been provided during the visit.
Between August and October 2019, patients who had participated in
the intervention phase were mailed a letter asking them to complete an
enclosed post-intervention survey and return it in a provided self-
addressed and stamped envelope. Patients’ answers on the
S.P. Huepenbecker et al.
Gynecologic Oncology Reports 43 (2022) 101060
3
intervention questionnaire and post-intervention survey were matched
and assigned de-identied numbers. Patients were dened as having
received ACP resources if they had received one or more of the offered
resources (discussion with gynecologic oncology provider, ACP
pamphlet, and/or social work referral). Patients were dened as controls
if they did not receive ACP resources during the intervention period. If
patients did not return the survey after two weeks, they were
approached by phone and asked to complete the survey with a study
team member. We aimed to administer the post-intervention survey to a
random convenience sample of at least 25 % of the patients who
received ACP resources and at least 12.5 % of the controls to enable a
rapid evaluation of the intervention.
The post-intervention survey contained 23 questions regarding:
whether the patient had current ACP documents and if they had given a
copy to their healthcare provider; self-rating of their current state of
health; true/false and multiple choice questions regarding ACP knowl-
edge; yes/no and multiple-choice questions regarding awareness of and
prior discussions with healthcare providers about ACP; and three
questions to rate their self-reported understanding of ACP and how to
complete ACP documents on a 10-point Likert scale (0 = unsure, 10 =
fully understand). The ACP uptake rate was calculated as the number of
patients who self-reported attainment of ACP documents between the
outpatient intervention visit and post-intervention survey divided by the
total number of patients who lacked ACP at their outpatient visit.
Fig. 1. Flowsheet of advance care planning quality improvement project.
S.P. Huepenbecker et al.
Gynecologic Oncology Reports 43 (2022) 101060
4
2.5. Statistical analysis
Descriptive statistics were used to summarize demographic and
clinical characteristics and to compare groups. Continuous variables are
reported as medians with interquartile ranges or means with standard
deviations. Qualitative variables are summarized by counts and per-
centages. Pearson’s chi-square or Fisher’s exact tests were used as
appropriate. Student’s t-tests or Mann-Whitney U tests were used for
continuous variables as appropriate. In the needs assessment, responses
were compared between patients with and without pre-existing ACP
documents. A multivariate analysis (covariates included age, body mass
index, race, religion, cancer site, cancer stage, current treatment, and
recurrent disease) was used to assess patient predictors of readiness,
ACP knowledge, and preferences in discussing ACP. In the intervention,
we compared responses between patients who did and did not receive
ACP resources. We used logistic regression models to identify patients at
risk for not having ACP as well as those who desired ACP resources. SAS
software was used for all analyses and P < 0.05 was considered signif-
icant. This manuscript was written according to the Revised Standards
for Quality Improvement Reporting Excellence (SQUIRE 2.0) guidelines
(Ogrinc et al., 2015).
3. Results
3.1. Baseline ACP knowledge and needs assessment
Of 175 gynecologic oncology patients approached, 106 (61 %)
completed the needs assessment survey. The majority were white (81
%), had a religious preference (72 %), and had recurrent disease (58 %).
Patients had a variety of primary cancer sites and stages and perfor-
mance status values (Table 1).
Most patients (82 %) thought discussing ACP was somewhat or very
important. However, only 33 % of patients had existing ACP documents,
49 % did not know how to obtain ACP documents, only 18 % reported
having ever discussed ACP during an ofce visit, and only 26 % had ever
shared their end-of-life care preferences with their gynecologic oncol-
ogist. Patients with recurrent disease were more likely than those
without recurrent disease to have discussed end-of-life care (85 % vs 64
%, P = 0.013) or whether they would want to receive cardiopulmonary
resuscitation or be placed on a mechanical ventilator (80 % vs 50 %, P =
0.001).
Patients felt more comfortable discussing ACP with their gynecologic
oncologist (80 %) than with a resident or fellow (32 %) or a nurse (50
%). The majority (52 %) of patients expressed that the outpatient ofce
was the best setting for discussing ACP. Compared to patients without
existing ACP documents, those with ACP documents were more likely to
correctly answer the question: “the power of attorney is next of kin
unless designated otherwise” (64 % vs 85 %, P = 0.027). We found no
other signicant differences in ACP knowledge between patients with
and without ACP documents. At the end of the survey, 80 % of patients
felt it would be helpful to talk with their gynecologic oncologist about
advance directives, 38 % asked for more information, and 55 % reported
that participating in the survey changed their willingness to discuss ACP.
3.2. ACP intervention
Of the 543 gynecologic oncology patients who were offered the
outpatient intervention, 526 (97 %) met inclusion criteria (Fig. 1) and
were included in analysis. Two hundred eighteen (41 %) self-reported
having existing ACP documents and 308 (59 %) either did not have or
were unsure whether they had ACP documents. Compared to women
with ACP documents, those without ACP documents were younger
(median age 68 vs 62, P < 0.0001) and were more likely to have non-
Stage IV disease (75 % vs 81 %, P = 0.003), non-recurrent disease
(67 % vs 77 %, P = 0.006), no religious preference (33 % vs 44 %, P =
0.002), and cervical cancer (6 % vs 17 %, P = 0.002) (Table 2).
Table 1
Baseline advance care planning knowledge and needs assessment patient char-
acteristics (N = 106).
Variable
Age, median (IQR*) 61 (53–70)
Race, n (%)
Caucasian 85 (81 %)
Black 16 (15.2 %)
Asian 2 (1.9 %)
Other/unknown 2 (1.9 %)
Religion, n (%)
Christian, Jewish, Muslim, Hindu, Buddhist 76 (72 %)
No religion 30 (28 %)
Primary cancer site, n (%)
Ovarian/Fallopian tube/primary peritoneal 40 (38 %)
Endometrial 36 (34 %)
Cervical 20 (19 %)
Vulvar/vaginal/other 4 (3.8 %)
Stage, n (%)
I 24 (23 %)
II 10 (9 %)
III 39 (37 %)
IV 32 (30 %)
Recurrent disease, n (%) 62 (58 %)
Self-reported health, n (%)
Very poor/poor/fair 79 (75 %)
Good/excellent 26 (25 %)
Eastern Cooperative Oncology Group performance status, n (%)
0 24 (23 %)
1 29 (28 %)
2 11 (11 %)
3 13 (12 %)
4 2 (2 %)
Unknown 26 (25 %)
*Interquartile range.
Table 2
Advanced Care Planning (ACP) intervention: patient characteristics by pre-
existing ACP document status.
Variable Current ACP
documents
(n = 218)
No current ACP
documents (n = 308)
P-value
Age, median (IQR*) 68 (63–75) 62 (52–69) <0.001
Religious preference, n (%) 147 (67.4) 179 (58.1) 0.03
Primary cancer site, n (%) 0.001
Ovarian/Fallopian tube/
primary peritoneal
84 (38.4) 93 (30.3)
Endometrial 105 (47.9) 136 (44.3)
Cervical 12 (5.5) 54 (17.5) 0.001
Vulvar/vaginal/other 17 (7.8) 25 (8.1)
Stage, n (%) 0.01
I 93 (42.5) 139 (45.3)
II 11 (5.0) 23 (7.5)
III 60 (27.4) 90 (29.3)
IV 36 (16.5) 25 (8.1) 0.01
Current treatment, n (%) 76 (34.7) 87 (28.3) 0.12
Recurrent disease, n (%) 74 (33.8) 70 (22.8) 0.005
Interested in ACP
resources, n (%)
43 (19.7) 97 (31.5)
Discussion with provider 11 (5.0) 25 (8.1) 0.16
ACP pamphlet 41 (18.8) 90 (29.2) 0.01
Social work referral 16 (7.7) 39 (12.7) 0.09
*Interquartile range #Patients who answered “No” or “Unsure”; Signicant re-
sults in bold text.
S.P. Huepenbecker et al.
Gynecologic Oncology Reports 43 (2022) 101060
5
One hundred forty patients (27 %) desired 1 or more ACP resources,
including 97 patients among 308 (32 %) without ACP documents and 43
patients among 218 (20 %) with ACP documents. Of those without ACP
documents who desired ACP resources, 25 (26 %) wanted to discuss ACP
with their oncology provider, 89 (92 %) wanted an ACP pamphlet, and
38 (39 %) desired a social work referral (Table 2). Among patients who
lacked ACP documents, factors associated with desiring ACP resources
included older age (median age 64 vs 61, P = 0.01), religious preference
(67 % vs 52 %, P = 0.01), and current cancer treatment (38 % vs 23 %, P
= 0.007). Compared to patients who declined ACP resource(s), those
who desired ACP resource(s) were more likely to be undergoing current
cancer treatment (28 % vs 39 %, P = 0.01). All other variables were
similar between the two groups.
3.3. Post-intervention survey
Among 202 subjects who received ACP resources during the inter-
vention, 107 were randomly contacted for post-intervention survey, and
50 (25 %) completed the survey. Among 324 subjects who did not
receive ACP resources, 118 were randomly contacted for post-
intervention survey and 48 (15 %) completed the survey, meeting our
prespecied convenience samples (Fig. 1). Compared to controls, those
who received ACP resource(s) were more likely to have stage IV disease
(6 % vs 30 %, P = 0.02). The two groups were otherwise balanced in
sociodemographic and clinical characteristics (Supplemental Table 2).
Patients who received ACP resources during the intervention were
signicantly more likely than controls to have had ACP discussion(s)
with their gynecologic oncologist (68 % vs 38 %, P = 0.001). In both
groups, the majority of patients considered ACP discussions with their
gynecologic oncology physician to be somewhat or very important (92
% who received ACP vs 88 % of controls, P = 0.67). Patients who
received ACP resources were more likely than controls to know how to
create an ACP document (median self-reported prociency 8/10 vs 5/
10, P = 0.048). Otherwise, there were no differences between the two
groups in ACP discussions (Table 3) or knowledge (Supplemental 3).
Patients who reported discussing ACP or end-of-life care with their gy-
necologic oncologist were more likely than controls to have ACP docu-
ments recorded in their EMR, but the difference was not signicant (27
% vs 9 %, P = 0.08). Overall, patients who received ACP resources were
no more likely than controls to have ACP documents recorded in their
electronic medical record.
4. Discussion
This study provides valuable information regarding gynecologic
oncology patients’ attitudes toward ACP and can be used to improve
uptake of ACP documentation. First, we found that patients desire ACP
discussions and prefer to have these discussions in the outpatient setting
with their gynecologic oncologist. Second, offering ACP resources in the
outpatient setting is feasible. Third, receipt of ACP resources improved
patient-centered outcomes including increased ACP discussions with
their gynecologic oncology provider and improved prociency
regarding how to complete an ACP document. However, our interven-
tion did not increase overall ACP documentation, indicating that more
research is needed to test behavioral interventions that assess and pro-
mote patient readiness to bridge the gap between expressed interest in
ACP and actual documentation.
Potential reasons that our study intervention did not increase uptake
or ACP documentation may be related to patient factors such as insight
into their anxiety surrounding end-of-life issues, unstable social support
to discuss ACP, and even lack of motivation to prioritize ACP docu-
mentation over more pressing unmet social and mental health needs.
Nevertheless, as we discuss below, other considerations related to our
actual study design, implementation, and length of follow-up, may have
also contributed to not nding a direct association between patient
expressed interest in ACP and actual uptake and documentation.
Consistent with work in other patient populations, we found that
gynecologic oncology patients value ACP, but often do not discuss the
topic with their providers. Additionally, patients often lack access to
ACP documents and do not ll them out (Brown et al., 2016; Yadav
et al., 2017). Despite widespread support for ACP (Emanuel et al., 1991;
Brown et al., 2017; Tamayo-Vel
´
azquez et al., 2010; Brinkman-
Stoppelenburg et al., 2014; Gaeta and Price, 2010; Oczkowski et al.,
2016), there is no consensus on the most effective intervention to
improve ACP document access and completion (Bravo et al., 2008;
Waldrop and Meeker, 2012). Given the paucity of ACP data specic to
gynecologic oncology patients (Nicolay et al., 2012), our QI project may
serve as an example of how to design and test an ACP intervention that is
tailored to patients’ needs and implemented within their cancer care
team (Davidoff et al., 2015).
Although patients who received ACP resources during our inter-
vention did not have greater ACP knowledge or document completion
than did controls, they were more likely to have ACP discussions with
their provider, which was our primary outcome. Moreover, when pa-
tients reported having these discussions, they were more likely to
complete ACP forms. Although this effect was not statistically signi-
cant, it is consistent with multiple studies suggesting that ACP discus-
sions alone can lead to completion of ACP documents (Houben et al.,
2014; Sinclair et al., 2017; Morrison et al., 2005; Reilly et al., 1995).
Future studies should reveal whether a longer follow-up time than we
used (3–6 months post-intervention) or a larger sample size could yield a
statistically signicant difference in ACP document completion.
Because our intervention occurred in the outpatient setting, it
captured patients in different stages of their cancer care, including
diagnosis, active treatment, surveillance, and recurrence, but before
deterioration, which is when many oncologists may rst broach the
subject of ACP (Keating et al., 2010). Including such a heterogeneous
group allowed us to capture meaningful differences in patients’ needs
and preferences regarding ACP resources. Among patients in the inter-
vention phase, undergoing active treatment was predictive of desiring
ACP resource(s), although disease recurrence did not correlate with ACP
needs. Notably, 80 % of patients in our needs assessment phase, but only
30 % of those in the intervention phase desired ACP resources. This may
have been because our needs assessment was conducted with inpatients,
who may be more attuned to their goals of care than outpatients, similar
to the ndings of Goswami et al. (2020). It could also have been due to
unacceptability of the intervention to our patients, since the interven-
tion was designed based on prior studies, but not patient input. Relevant
Table 3
Advance Care Planning (ACP) post-intervention survey – ACP prociency and
discussions.
Question Received ACP
resources (n =
50)
Did not receive
ACP resources (n
= 48)
P-
value
Knowledge of how to make
ACP document (1–10*)
8 (4–10) 5 (0–10) 0.048
Discussed ACP with a
gynecologic oncologist,
n (%)
34 (68.0) 18 (37.5) 0.001
Discussed ACP with ANY
health care provider, n
(%)
46 (92.0) 39 (81.3) 0.12
Discussed end-of-life care
with a gynecologic
oncologist, n (%)
4 (8.0) 3 (6.3) 1.00
Discussed end-of-life care
with ANY health care
provider, n (%)
18 (36.0) 13 (27.1) 0.34
Discussed end-of-life care
with a friend/family
member, n (%)
45 (90.0) 41 (85.4) 0.49
*Patient self-report of understanding using Likert scale: “0 = unsure and 10 =
fully understand”; Signicant results in bold text.
S.P. Huepenbecker et al.
Gynecologic Oncology Reports 43 (2022) 101060
6
to our subspecialty, ACP planning may be especially benecial in young
patients who have no religious preference, have cervical cancer, have
early stage disease, or have non-recurrent disease, as these populations
were least likely to have completed ACP documents.
Two institution-wide changes that occurred during our study period
may have affected our results. Our department moved to new inpatient
oors and moved our outpatient ofces to a new physical location on the
medical campus. Thus, there was a 12-month time lapse between our
needs assessment and the intervention phase. Additionally, our elec-
tronic medical records were converted to a new system between our
needs assessment and intervention. During inpatient admissions,
nursing staff are now prompted to document ACP records and any do-
not-resuscitate order. It is possible that documentation of ACP docu-
ments in medical records improved during our study period because of
these factors.
We note several additional limitations of our study. First, although
we designed our intervention to assess a random convenience sample of
patients who accepted or declined the ACP intervention, our post-
intervention survey cohort was small. Second, the control group was
exposed to questions about ACP and were offered ACP resources at the
time of their outpatient visit. Thus, some control patients may have felt
encouraged to think about or pursue ACP at a later time, which may
have biased our results towards the null. Third, our study has recall bias
because we asked patients questions in the post-intervention setting. For
example, in 11 cases, the physician documented an ACP discussion, but
the patient did not recall this conversation when asked during the post-
intervention survey. Fourth, it is possible that physicians inaccurately
perceived or documented patients’ acceptance or declination of ACP
resources. Fifth, although our groups were clinically heterogenous, we
excluded patients without English reading comprehension or speaking
uency. Thus, we may have missed important perspectives of patients
with limited health literacy, or those who are non-English speaking,
which limits the generalizability of our results. Finally, we did not
analyze our data by patients’ race, which may affect end-of-life
communication and resource utilization (Pollak et al., 2010; Loggers
et al., 2009).
Our institution is taking several steps to improve care of cancer pa-
tients. For example, we are developing an outpatient palliative care
clinic. In addition, we plan to capitalize on informatics available in our
new electronic medical record system to identify patients that are
lacking ACP documentation and use electronic functions such as pop-up
alerts to implement universal screening and documentation of ACP.
Other steps could include obtaining patient input to design more
acceptable interventions, increasing ACP discussions through dedicated
appointments or telemedicine visits, and expanding ACP discussions to
the inpatient setting. In gynecologic oncology, our goal is to have
documented ACP documents for ≥ 50 % of patients and documented
ACP discussions for ≥ 80 % of patients.
In summary, this QI project adds to the small body of literature
regarding ACP among gynecologic oncology patients. Consistent with
studies in patients with other cancer types (Brown et al., 2016; Brown
et al., 2017; Vogel et al., 2013), we nd that although gynecologic
oncology patients value ACP, few patients have documented ACP forms
in their medical records. We show that patients value supplemental re-
sources such as an ACP pamphlet, ACP discussions, and/or social work
referral. However, the most effective intervention appears to be dis-
cussion of ACP prompted by a gynecologic oncologist.
Funding
There are no funding sources related to the completion of this study.
CRediT authorship contribution statement
Sarah P. Huepenbecker: Conceptualization, Methodology, Valida-
tion, Investigation, Writing – original draft. Sophia Lewis:
Investigation, Data curation, Writing – review & editing. Mark C. Val-
entine: Investigation, Writing – review & editing. Marguerite L. Pal-
isoul: Conceptualization, Methodology, Writing – review & editing.
Premal H. Thaker: Writing – review & editing. Andrea R. Hagemann:
Writing – review & editing. Carolyn K. McCourt: Writing – review &
editing. Katherine C. Fuh: Writing – review & editing. Matthew A.
Powell: Writing – review & editing. David G. Mutch: Writing – review
& editing. Lindsay M. Kuroki: Conceptualization, Methodology,
Formal analysis, Resources, Writing – review & editing, Supervision,
Project administration.
Declaration of Competing Interest
The authors declare the following nancial interests/personal re-
lationships which may be considered as potential competing interests:
Dr. Fuh reports participation on advisory boards for Aravive and Myriad,
grants from Merck, and patents/royalties from Stanford University,
outside the submitted work. Dr. Kuroki reports grants from National
Center for Advancing Translational Sciences of the NIH (KL2TR002346)
and Doris Duke Fund to Retain Clinical Scientists, a patent from the GOG
Foundation, and a leadership role as a Junior Board Member of the
ASSCP, outside the submitted work. Dr. Powell reports advisory board
participation for Merck, GSK/Tesaro, AstraZeneca, Eisai, SeaGen, and
Clovis Oncology, outside the submitted work. Dr. Mutch reports lead-
ership roles in the Foundation for Women’s Cancer, NCI Gynecologic
Cancer Steering committee, and NCCN Committee for Cervix and
Corpus, outside the submitted work. Dr. McCourt reports royalties from
UpToDate, outside the submitted work. Dr. Palisoul reports consulting
fees from Medtronic, outside the submitted work. There were no other
reported conicts of interest.
Acknowledgements
We would like to thank Deborah Frank for her assistance in the
editing of this manuscript.
Appendix A. Supplementary material
Supplementary data to this article can be found online at https://doi.
org/10.1016/j.gore.2022.101060.
References
ASCO’s Quality Oncology Practice Initiative. ASCO Quality Programs 2021; Available
from: https://practice.asco.org/quality-improvement/quality-programs.
Back, A.L., Anderson, W.G., Bunch, L., Marr, L.A., Wallace, J.A., Yang, H.B., Arnold, R.
M., 2008. Communication about cancer near the end of life. Cancer 113 (S7),
1897–1910.
Barnes, S., Gardiner, C., Gott, M., Payne, S., Chady, B., Small, N., Seamark, D., Halpin, D.,
2012. Enhancing patient-professional communication about end-of-life issues in life-
limiting conditions: a critical review of the literature. J. Pain Symptom Manage. 44
(6), 866–879.
Bravo, G., Dubois, M.F., Wagneur, B., 2008. Assessing the effectiveness of interventions
to promote advance directives among older adults: a systematic review and multi-
level analysis. Soc. Sci. Med. 67 (7), 1122–1132.
Brinkman-Stoppelenburg, A., Rietjens, J.A., van der Heide, A., 2014. The effects of
advance care planning on end-of-life care: a systematic review. Palliat. Med. 28 (8),
1000–1025.
Brown, A.J., Shen, M.J., Urbauer, D., Taylor, J., Parker, P.A., Carmack, C., Prescott, L.,
Kolawole, E., Rosemore, C., Sun, C., Ramondetta, L., Bodurka, D.C., 2016. Room for
improvement: An examination of advance care planning documentation among
gynecologic oncology patients. Gynecol. Oncol. 142 (3), 525–530.
Brown, A.J., Shen, M.J., Urbauer, D., Taylor, J., Parker, P.A., Carmack, C., Prescott, L.,
Rosemore, C., Kolawole, E., Sun, C., Ramondetta, L., Bodurka, D.C., 2017. The
Advance Care Planning Readiness Scale: Development and Validation of a Measure
of Willingness to Discuss and Acceptance of End-of-Life Care in Gynecologic Cancer
Patients. Int. J. Gynecol. Cancer 27 (4), 838–846.
Chandar, M., Brockstein, B., Zunamon, A., Silverman, I., Dlouhy, S., Ashlevitz, K.,
Tabachow, C., Lapin, B., Ewigman, B., Mazzone, T., Obel, J., 2017. Perspectives of
Health-Care Providers Toward Advance Care Planning in Patients With Advanced
Cancer and Congestive Heart Failure. Am. J. Hosp. Palliat. Care 34 (5), 423–429.
Davidoff, F., Dixon-Woods, M., Leviton, L., Michie, S., 2015. Demystifying theory and its
use in improvement. BMJ Qual. Saf. 24 (3), 228–238.
S.P. Huepenbecker et al.
Gynecologic Oncology Reports 43 (2022) 101060
7
Detering, K.M., Hancock, A.D., Reade, M.C., et al., 2010. The impact of advance care
planning on end of life care in elderly patients: randomised controlled trial. Bmj 340,
p. c1345.
Emanuel, L.L., Barry, M.J., Stoeckle, J.D., Ettelson, L.M., Emanuel, E.J., 1991. Advance
directives for medical care–a case for greater use. N. Engl. J. Med. 324 (13),
889–895.
Falloweld, L., Jenkins, V., 1999. Effective communication skills are the key to good
cancer care. Eur. J. Cancer 35 (11), 1592–1597.
Gaeta, S., Price, K.J., 2010. End-of-life issues in critically ill cancer patients. Crit. Care
Clin. 26 (1), 219–227.
Goswami, P., Mistric, M., Diane Barber, F., 2020. Advance Care Planning: Advanced
Practice Provider-Initiated Discussions and Their Effects on Patient-Centered End-of-
Life Care. Clin. J. Oncol. Nurs. 24 (1), 81–87.
Harris, P.A., Taylor, R., Thielke, R., Payne, J., Gonzalez, N., Conde, J.G., 2009. Research
electronic data capture (REDCap)–a metadata-driven methodology and workow
process for providing translational research informatics support. J. Biomed. Inform.
42 (2), 377–381.
Heyland, D.K., Barwich, D., Pichora, D., et al., 2013. Failure to engage hospitalized
elderly patients and their families in advance care planning. JAMA Int. Med. 173 (9),
778–787.
Houben, C.H.M., Spruit, M.A., Groenen, M.T.J., Wouters, E.F.M., Janssen, D.J.A., 2014.
Efcacy of advance care planning: a systematic review and meta-analysis. J. Am.
Med. Dir Assoc. 15 (7), 477–489.
Keating, N.L., Landrum, M.B., Rogers, S.O., Baum, S.K., Virnig, B.A., Huskamp, H.A.,
Earle, C.C., Kahn, K.L., 2010. Physician factors associated with discussions about
end-of-life care. Cancer 116 (4), 998–1006.
Kish, S.K., Martin, C.G., Price, K.J., 2000. Advance directives in critically ill cancer
patients. Crit. Care Nurs. Clin. North Am. 12 (3), 373–383.
Kubi, B., Istl, A.C., Lee, K.T., Conca-Cheng, A., Johnston, F.M., 2020. Advance Care
Planning in Cancer: Patient Preferences for Personnel and Timing. JCO Oncol. Pract.
16 (9), e875–e883.
Loggers, E.T., Maciejewski, P.K., Paulk, E., DeSanto-Madeya, S., Nilsson, M.,
Viswanath, K., Wright, A.A., Balboni, T.A., Temel, J., Stieglitz, H., Block, S.,
Prigerson, H.G., 2009. Racial differences in predictors of intensive end-of-life care in
patients with advanced cancer. J. Clin. Oncol. 27 (33), 5559–5564.
Matsuoka, J., Kunitomi, T., Nishizaki, M., et al., 2018. Advance care planning in
metastatic breast cancer. Chin. Clin. Oncol. 7(3), p. 33.
Morrison, R.S., Chichin, E., Carter, J., Burack, O., Lantz, M., Meier, D.E., 2005. The effect
of a social work intervention to enhance advance care planning documentation in
the nursing home. J. Am. Geriatr. Soc. 53 (2), 290–294.
Nicolay, C.R., Purkayastha, S., Greenhalgh, A., et al., 2012. Systematic review of the
application of quality improvement methodologies from the manufacturing industry
to surgical healthcare. Br. J. Surg. 99(3), 324–335.
Oczkowski, S.J., Chung, H.O., Hanvey, L., et al., 2016. Communication Tools for End-of-
Life Decision-Making in Ambulatory Care Settings: A Systematic Review and Meta-
Analysis. PLoS One 11(4), p. e0150671.
Ogrinc, G., Davies, L., Goodman, D., Batalden, P., Davidoff, F., Stevens, D., 2015. Squire
2.0 (Standards for Quality Improvement Reporting Excellence): revised publication
guidelines from a detailed consensus process. Am. J. Crit. Care 24 (6), 466–473.
Pollak, K.I., Alexander, S.C., Grambow, S.C., Tulsky, J.A., 2010. Oncologist patient-
centered communication with patients with advanced cancer: exploring whether
race or socioeconomic status matter. Palliat. Med. 24 (1), 96–98.
Reilly, B.M., Wagner, M., Magnussen, C.R., et al., 1995. Promoting inpatient directives
about life-sustaining treatments in a community hospital. Results of a 3-year time-
series intervention trial. Arch. Intern. Med. 155 (21), 2317–2323.
Science of Improvement: Testing Changes. [cited 2021; Available from: http://www.ihi.
org/resources/Pages/HowtoImprove/ScienceofImprovementTestingChanges.aspx.
Sinclair, C., Auret, K.A., Evans, S.F., et al., 2017. Advance care planning uptake among
patients with severe lung disease: a randomised patient preference trial of a nurse-
led, facilitated advance care planning intervention. BMJ Open 7(2), p. e013415.
Tamayo-Vel
´
azquez, M.-I., Sim
´
on-Lorda, P., Villegas-Portero, R., Higueras-Callej
´
on, C.,
García-Guti
´
errez, J.-F., Martínez-Pecino, F., Barrio-Cantalejo, I.-M., 2010.
Interventions to promote the use of advance directives: an overview of systematic
reviews. Patient Educ. Couns. 80 (1), 10–20.
Temel, J.S., Greer, J.A., Admane, S., Solis, J., Cashavelly, B.J., Doherty, S., Heist, R.,
Pirl, W.F., 2010. Code status documentation in the outpatient electronic medical
records of patients with metastatic cancer. J. Gen. Intern. Med. 25 (2), 150–153.
Vogel, R.I., Petzel, S.V., Cragg, J., McClellan, M., Chan, D., Dickson, E., Jacko, J.A.,
Sainfort, F., Geller, M.A., 2013. Development and pilot of an advance care planning
website for women with ovarian cancer: a randomized controlled trial. Gynecol.
Oncol. 131 (2), 430–436.
Waldrop, D.P., Meeker, M.A., 2012. Communication and advanced care planning in
palliative and end-of-life care. Nurs. Outlook 60 (6), 365–369.
Yadav, K.N., Gabler, N.B., Cooney, E., Kent, S., Kim, J., Herbst, N., Mante, A., Halpern, S.
D., Courtright, K.R., 2017. Approximately one in three US adults completes any type
of advance directive for end-of-life care. Health Aff. (Millwood) 36 (7), 1244–1251.
S.P. Huepenbecker et al.
