Patient Portals to Support Palliative and End-of-Life Care: Scoping Review
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JOURNAL OF MEDICAL INTERNET RESEARCH Ingle et al
Review
Patient Portals to Support Palliative and End-of-Life Care: Scoping
Review
M Pilar Ingle1*, BA, MSW; Cristina Valdovinos2*, MPH; Kelsey L Ford3*, DrPH; Shou Zhou3*, PhD; Sheana Bull3*,
PhD; Starlynne Gornail3*, MS; Xuhong Zhang3*, PhD; Susan Moore3, PhD; Jennifer Portz4*, MSW, PhD
1
Graduate School of Social Work, University of Denver, Denver, CO, United States
2
David Geffen School of Medicine, University of California Los Angeles, Los Angeles, CO, United States
3
Colorado School of Public Health, University of Colorado, Aurora, CO, United States
4
Department of General Internal Medicine, University of Colorado, Aurora, CO, United States
*
these authors contributed equally
Corresponding Author:
M Pilar Ingle, BA, MSW
Graduate School of Social Work
University of Denver
2148 S High St
Denver, CO, 80210
United States
Phone: 1 720 515 8595
Email: Pilar.ingle@du.edu
Abstract
Background: Although patient portals are widely used for health promotion, little is known about the use of palliative care and
end-of-life (PCEOL) portal tools available for patients and caregivers.
Objective: This study aims to identify and assess the user perspectives of PCEOL portal tools available to patients and caregivers
described and evaluated in the literature.
Methods: We performed a scoping review of the academic literature directed by the PRISMA (Preferred Reporting Items for
Systematic Reviews and Meta-analyses) extension for Scoping Review and searched three databases. Sources were included if
they reported the development or testing of a feature, resource, tool, or intervention; focused on at least one PCEOL domain
defined by the National Coalition for Hospice and Palliative Care; targeted adults with serious illness or caregivers; and were
offered via a patient portal tethered to an electronic medical record. We independently screened the titles and abstracts (n=796)
for eligibility. Full-text (84/796, 10.6%) sources were reviewed. We abstracted descriptions of the portal tool name, content,
targeted population, and reported user acceptability for each tool from included sources (n=19).
Results: In total, 19 articles describing 12 tools were included, addressing the following PCEOL domains: ethical or legal (n=5),
physical (n=5), and psychological or psychiatric (n=2). No tools for bereavement or hospice care were identified. Studies have
reported high acceptability of tools among users; however, few sources commented on usability among older adults.
Conclusions: PCEOL patient portal tools are understudied. As medical care increasingly moves toward virtual platforms, future
research should investigate the usability and acceptability of PCEOL patient portal resources and evaluate their impact on health
outcomes.
(J Med Internet Res 2021;23(9):e28797) doi: 10.2196/28797
KEYWORDS
patient portal; electronic health record; digital health; palliative care; end-of-life care
include web-based tools for medical visits, health records, and
Introduction medications [1]. In addition to providing patients with access
Patient portals are secure websites that provide access to to their health records, health care organizations offer other
personal health information and health care services that often digital health resources and functions through patient portals,
including messaging with providers, general medical
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information, and prescription refills [2]. The growing adoption
of portals shows that approximately 90% of health care
Methods
organizations provide a portal system [3]. Through access to Scoping Review
health records, patient portals promote self-management of
health and disease and help improve patient-clinician As little is known about the use of patient portals for the delivery
communication [4-7]. of palliative and end-of-life care, a scoping review of the
academic literature was conducted to identify sources describing
Patients with chronic or serious illness may especially benefit currently available patient portal PCEOL tools. Our methods
from access to patient portals; in fact, having a chronic illness were aligned with methodological framework for scoping
is a predictor of portal enrollment and use [8]. Older reviews by Arksey and O’Malley [26], which includes the
adults—80% of whom have at least one chronic illness [9]—are following stages: identifying the research questions; identifying
increasingly becoming the focus of chronic condition relevant studies; study selection; charting the data; and collating,
management and population health initiatives that involve the summarizing, and reporting the results. The PRISMA (Preferred
adoption and use of digital health technology, including patient Reporting Items for Systematic Reviews and Meta-analyses)
portals. Although there are concerns about the low use of patient extension for Scoping Review checklist guided our reporting
portals among this population [10-13], evidence also suggests (Multimedia Appendix 1) [27]. Our scoping review goals and
a growing trend of internet and technology use among older procedures were registered with the Open Science Framework
adults [14,15]. This emphasizes the need to develop and tailor on March 26, 2020 (DOI 10.17605/OSF.IO/N34JZ).
patient portals for the use of older adults. The rise of patient
portal use also presents the opportunity to maximize patient Identifying Relevant Studies
empowerment, education, and patient-clinician communication To identify PCEOL patient portal tools described in the
among patients facing serious illnesses. academic literature, we searched three databases (Ovid
MEDLINE, CINAHL, and Web of Science) for peer-reviewed
In light of the potential benefits of digital health technologies
sources, including both qualitative and quantitative studies. The
for older adults and individuals with chronic or serious illness,
search terms included patient portal in combination with
interest is also growing in digital health interventions targeted
PCEOL terms such as palliative care, hospice, end-of-life,
toward palliative care and end-of-life (PCEOL) patients,
terminal illness, cancer, advance directives, symptom
including the use of patient portals [16]. Palliative care focuses
management, ACP, grief, and caregiver support. Our specific
on pain and symptom management and improving quality of
search strategy with exclusion terms is presented in Multimedia
life for patients with serious illness and their families, and the
Appendix 2. The PCEOL search terms have previously been
Institute of Medicine has named access to these services as
used to identify digital health solutions directed toward palliative
essential [17,18]. Despite the potential benefits of palliative
care [28,29]. No time limits restricted the search, and only
care [19], issues with access to this specialized care persist
sources in English were included. We used Covidence, a
because of barriers, including lack of availability and public
web-based systematic review management program to remove
awareness, particularly in rural areas [20,21]. Patient portals
duplicates, track citations, and screen references [30]. Our search
can be used to deliver advance care planning (ACP) education
was conducted in March 2020.
and provide access to materials for documenting advance
directives, Medical Durable Power of Attorney (MDPOA), and Sources were included in the scoping review if they (1)
health care proxies. Studies implementing ACP efforts through described a developed feature, resource, tool, or intervention
patient portals demonstrate patient acceptability as well as that focused on at least one domain of PCEOL as defined by
successful increases in ACP-related documentation [22-24]. the National Coalition for Hospice and Palliative Care [31]; (2)
Although this evidence is encouraging for the use of patient targeted adults with serious illness (a health condition with a
portals to promote PCEOL outcomes, there is also a need to high risk of mortality impacting daily functioning or quality of
understand the utility of patient portals for PCEOL patient life) [32] or their family and caregivers; and (3) were offered
education and resources and whether patient portal use is via a patient portal. The domains of palliative care include the
associated with other important PCEOL health outcomes, such following:
as symptom management, hospice use (high quality palliative
• Physical aspects of care including pain and symptom
care near the end of life, typically in the last 6 months) [25],
management, as well as quality of life assessment
and documentation of care preferences.
• Psychological aspects of care, including care about anxiety,
As a first step in this line of research, we aim to conduct a depression, stress, cognitive impairment, psychosocial
scoping review of PCEOL patient portal research. The aims of support, coping skills, and support around patient or family
this study are to (1) identify PCEOL patient portal tools grief and bereavement
available for patients and caregivers that are described and • Social aspects of care, including patient and family
evaluated in the literature and (2) document patient and caregiver education and caregiver support
perspectives regarding these tools. By describing currently • Spiritual and cultural aspects of care, including spiritual,
available tools and their respective user perspectives, this review existential, or religious support or attention to language,
intends to inform future research examining the association ritual, or dietary needs
between tool use and PCEOL outcomes while guiding future • Care of the imminently dying, including end-of-life care
PCEOL patient portal tool development. and education
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• Ethical and legal aspects of care, including ACP and or planned portal feature, did not provide a detailed description
documentation (appointment of MDPOA or health care of the resources or content (eg, abstract and review articles),
proxy, and completion of advance directives) did not focus on a PCEOL domain, targeted a pediatric or
non–seriously ill population, examined the user characteristics
To determine whether sources met the inclusion criteria, 2
and perspectives of general portal use, were not published in
coders (MPI and CV) independently reviewed the academic
English, described a tool that was not tethered to a patient portal
sources by title and abstract.
(eg, free-standing website or mobile app), or for which the full
Full-Text Review text was not retrievable, were excluded from the review.
Full texts of sources included by title and abstract were Pediatric populations were excluded because of their different
downloaded and further assessed for eligibility by 2 coders care needs, access to technology, and technological skills.
(MPI and CV). We determined whether the portal tool was The coders regularly reviewed the sources and discussed
targeted toward patients, caregivers, or both by reviewing the questions and possible disputes. Both coders agreed on the
full text of the included sources for explicit mention of the features included in the review, with a third reviewer (JDP)
intended users of the portal tool. The full text was also reviewed reconciling disputes. A summary of the search and screening
for a thorough description of the tool’s purpose and available processes is shown in Figure 1.
features, apps, and content. Sources that presented a protocol
Figure 1. PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) flow diagram. PCEOL: palliative care and end-of-life.
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Charting the Data (84/796) of full-text sources. We excluded an additional 65
The full text of each of the included sources was reviewed, and sources after full-text review because they presented a protocol
the elements and features of the described PCEOL patient portal or planned portal feature (7/65, 11%), examined user
tool were abstracted by 2 reviewers (MPI and CV) into a characteristics and perspectives of general portal use (6/65, 9%),
Microsoft Excel spreadsheet. To ensure consistency, the described a tool that was not tethered to a patient portal (17/65,
reviewers double-extracted five articles before dividing the 26%), did not focus on a specific PCEOL domain (6/65, 9%),
remaining articles. The abstracted data included the following or was targeted at a pediatric or non–seriously ill population
components: portal name, health system user, developer (8/65, 12%). At this stage, we also excluded sources that did
(research team or organization), target illness and/or palliative not provide detailed descriptions of the tool’s intended audience,
care element, intended audience (patient, patient’s caregiver, content, and/or features (12/65, 18%) and sources for which the
or both), and a summary of the features. When described, patient full text was not retrieved through the 3 separate university
and caregiver perspectives about the tool, including libraries we had access to (9/65, 13%). Using these methods,
measurements and qualitative reports of acceptability or usability we identified 18 sources eligible for inclusion. During the
and user satisfaction, were abstracted. full-text review of a selected article [33], an additional article
that met the inclusion criteria [34] was identified in the text,
Collating, Summarizing, and Reporting the Results bringing the total number of included sources to 19.
We used an iterative and mixed inductive-deductive approach Identification of PCEOL Patient Portal Tools
to summarize the charted information and results from the
included papers to address our aims [26]. The charted We abstracted data from 19 sources published between the years
information from each paper was reviewed extensively to 2013 and 2020 that describe 12 unique PCEOL patient portal
identify similarities and differences in patient portal features, tools (Table 1). The identified tools were developed by
PCEOL domains, study population or targeted audience, and researchers and clinicians with the specific intent of enhancing
acceptability and usability findings (when available). The first, PCEOL care. The identified PCEOL patient portal tools address
second, and senior authors (MPI, CV, and JDP) reviewed and the following domains: ethical and legal (n=5), physical (n=5),
agreed upon the thematic groupings of the results. and psychological aspects of care (n=2). No tools address
spiritual or bereavement support or hospice care education.
Results Tools addressing the physical and psychological aspects of
palliative care focus on quality of life and psychosocial support
Study Selection tools and are designed for cancer (n=6) and chronic kidney
disease (n=1) patients. Patients are the intended audience for
The initial database search identified 796 unique sources that
most PCEOL patient portal tools (n=9). Most tools were
we screened by title and abstract (Figure 1). At this stage, we
developed in an academic setting (n=11) and in the United States
excluded 89.4% (712/796) of sources and reviewed 10.6%
(n=9).
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Table 1. Summary of included articles.
Study Portal PCEOLa Sample size Study de- Developer Summary of features Summary of portal Promotion of
name domain and character- sign use use
istics
Ba- Pa- Ethical or 200 patients; Evaluation Beth Israel Dea- A guided HCPc interview Of the participants N/Ad
jracharya tientSite legal 63% women; of portal coness Medical delivered via patient por- that did not have an
et al [24] (ACPb) 82% White; implemen- Center, Boston, tal that provides educa- HCP listed before
mean age 55 tation MA, United tion on the HCP role, partaking in the inter-
years (SD States collects information nec- view, 78% submit-
15.16) essary for the completion ted HCP information
of an HCP form, allows for clinician review.
patients to print the HCP Of 200 patients, 139
form and submit their submitted updated or
HCP form electronically. new information
The HCP form may be about HCP overall.
incorporated into pa-
tient’s personal health
record.
Tieu et al Mayo Ethical or 2526 patients; Random- Mayo Clinic, Tool delivers a personal- Only 5.5% of the in- Patients ran-
[35] Clinic Pa- legal 51% female; ized con- Rochester, MN, ized, electronic message tervention group and domized to in-
tient On- (ACP) mean age 72 trolled in- United States to patients with a link to 2% of the control tervention
line Ser- years (SD 5.8) tervention ACP education and a group completed and group re-
vices state-specific advance di- returned an ADe. ceived mes-
rective form. sage encourag-
ing them to
complete AD;
reminder was
sent out 8
weeks after if
patients had
not completed.
Bose- MyChart Ethical or 50 patients Random- The Ohio State Tool delivers a secure In the intervention N/A
Brill et al (operated legal ized con- University, message to patients con- group, 10 of 23 par-
[34] through (ACP) trolled pi- Columbus, OH, sisting of an introduction ticipants completed
Epic) lot interven- United States to ACP and four ACP- ACP documentation
tion related questions. The re- compared with 1 of
sponses are automatically 25 participants in the
stored in the patient’s control group.
medical record and inte-
grated into an ACP pre-
visit planning algorithm
focused on enhancing
patient-provider commu-
nication surrounding
ACP preferences.
Bose- MyChart Ethical or 419 patients; Pragmatic The Ohio State Tool delivers a secure ACP documentation N/A
Brill et al (operated legal 65% female; trial University, message to patients con- in EHRf increased
[33] through (ACP) median age 61 Columbus, OH, sisting of an introduction by 27% in interven-
Epic) years; range United States to ACP and four ACP- tion group, com-
50-93 related questions. The re- pared with 0.7% in
sponses are automatically control group. 78%
stored in the patient’s of the intervention
medical record and inte- group read the initial
grated into an ACP pre- message sent to
visit planning algorithm them and 19% re-
focused on enhancing sponded to at least
patient-provider commu- one ACP-related
nication surrounding question.
ACP preferences.
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Study Portal PCEOLa Sample size Study de- Developer Summary of features Summary of portal Promotion of
name domain and character- sign use use
istics
Lum et al My- Ethical or 2184 patients; Quality im- University of Tool provides patient- Over 15 months, N/A
[22] Health legal 69% female; provement Colorado Hospi- centered website for ACP 2814 patients used
Connec- (ACP) mean age 45 interven- tal, Aurora, CO, education, secure messag- ACP tool; 89%
tion (oper- years; range tion United States ing with an ACP support completed MDPOA
ated 17-98 team, the ability to com- form, 2% called or
through plete and sign an MD- sent web-based mes-
Epic) POAg form and to view sages; 8% viewed
the completed advance MDPOA form with-
directive in the patient’s out completing.
personal health record.
Jordan et My- Ethical or 46 patients; Explorato- University of Tool provides patient- Not collected N/A
al [23] Health legal 63% female; ry qualita- Colorado Hospi- centered website for ACP
Connec- (ACP) mean age 49 tive study tal, Aurora, CO, education, secure messag-
tion (oper- years United States ing with an ACP support
ated team, the ability to com-
through plete and sign an MD-
Epic) POA form and to view
the completed advance
directive in the patient’s
personal health record.
Brun- My- Ethical or 105 older Practice- University of Tool provides patient- At 1 year, 63 pa- N/A
gardt et al Health legal adult patients based pilot Colorado Hospi- centered website for ACP tients read ACP
[36] Connec- (ACP) initiative tal, Aurora, CO, education, secure messag- message and 17 had
tion (oper- United States ing with an ACP support taken at least one
ated team, the ability to com- ACP action step.
through plete and sign an MD-
Epic) POA form and to view
the completed advance
directive in the patient’s
personal health record.
Portz et My Ethical or 24 older adult Qualitative Kaiser Perma- Tool provides ACP edu- Not collected N/A
al [37] Health legal patients with case study nente, Denver, cation, ACP resources,
Manager (ACP) multiple CO, United and links to external
(operated chronic condi- States website to complete ad-
through tions; 71% fe- vance directives.
Epic) male; 79%
White; mean
age 78 years
(SD 5.4)
Dalal et Patient- Physical 119 admitted Evaluation Brigham and Tool allows patients with 66% users inputted N/A
al [38] Centered (QOLh) patients and of portal Women’s Hospi- serious illness to navigate daily goal; 41% in-
Toolkit 120 care- implemen- tal, Boston, their plan of care during putted overall goal
givers; 43% tation MA, United hospitalization. Patient (to be cured, to live
female; mean States can establish a single re- longer, to be comfort-
age 56 years covery goal and rate pri- able, other); 32%
orities, review medica- communicated care
tion and test results, se- preferences; 64%
curely message their care provided real-time
team, access educational feedback for team.
content, and view dis- Goals, results, team
charge checklists, tai- members, medica-
lored safety tips, and re- tions, and messages
minders. were the most fre-
quently visited
pages. Problem edu-
cation was the least
frequently visited
page.
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Study Portal PCEOLa Sample size Study de- Developer Summary of features Summary of portal Promotion of
name domain and character- sign use use
istics
Dalal et Patient- Physical 55 patients Prospective Brigham and Tool allows patients with Not collected Participants
al [39] Centered (QOL) preinterven- pre- or Women’s Hospi- serious illness to navigate were encour-
Toolkit tion, 40% fe- postinter- tal, Boston, their plan of care during aged to enter
male, 89% vention MA, United hospitalization. Patient recovery goals
White; mean study States can establish a single re- to the portal.
age 59 years covery goal and rate pri-
(SD 12.8); 46 orities, review medica-
patients tion and test results, se-
postinterven- curely message their care
tion, 46% fe- team, access educational
male, 83% content, and view dis-
White, mean charge checklists, tai-
age 58 years lored safety tips, and re-
(SD 13.5) minders.
Kuijpers MyAVL Physical 92 female pa- Pre- or Netherlands PROi collection and Overview of appoint- N/A
et al [40] or Mij- (QOL) tients with posttest in- Cancer Insti- symptom management ments and EMRj
nAVL breast cancer; tervention tute, Amster- for patients with breast or were accessed most
mean age 49 dam, Nether- non–small cell lung can- frequently; mean
years (SD lands cer. Patients can com- number of log-ins
11.4) plete quality of life and for on-treatment is
physical activity question- 10.9 with mean of
naires and receive person- 11.3 minutes. Mean
alized physical activity number of log-ins
advice based on the for off-treatment is
questionnaire responses. 5.6 with mean of
15.2 minutes.
Groen et MyAVL Physical 37 patients Feasibility Netherlands PRO collection and Mean number of N/A
al [41] (Mij- (QOL) with lung can- interven- Cancer Insti- symptom management log-ins over 4-month
nAVL) cer; 47% tion tute, Amster- for patients with breast or study period—11.2
women; 100% dam, Nether- non–small cell lung can- with mean duration
White; mean lands cer. Patients can com- of 12.9 minutes.
age 59 years plete quality of life and Overview of appoint-
(SD 8.4); physical activity question- ments, access to
range 40-76 naires and receive person- EMR, and question-
years alized physical activity naires were the most
advice based on the accessed.
questionnaire responses.
Wagner MyChart Physical 636 female pa- Clinical PROMISk, PRO collection and 80% of patients read e-PRO assess-
et al [42] (operated (QOL) tients with quality im- Northwestern symptom management the initial MyChart ments were
through cancer; 78% provement University for patients with cancer. message asking for sent before
Epic) White; age initiative (Chicago, IL) Delivers electronic PRO e-PROl assessment scheduled out-
mean 55 years and US Depart- assessments and other completion; about patient ap-
(SD 12.8); ment of Health assessments to identify 33% completed the pointments
range 21-90 and Human Ser- psychosocial concerns, entire assessment. through My-
years vices (Washing- informational and nutri- 90% of the patients Chart. Those
ton, DC), Unit- tional needs. The results that completed the who did not
ed States are immediately populat- assessment did so at compete the
ed to the patient’s EHR. home. assessment at
This integration allows home were
automated triage to multi- provided with
disciplinary care team. an iPad to
complete the
assessment
during appoint-
ment check-in.
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Study Portal PCEOLa Sample size Study de- Developer Summary of features Summary of portal Promotion of
name domain and character- sign use use
istics
Garcia et MyChart Physical 3521 patients Clinical PROMIS, PRO collection and Not collected e-PRO assess-
al [43] (operated (QOL) with cancer; quality im- Northwestern symptom management ments were
through 68% female; provement University for patients with cancer. sent before
Epic) 76% White; initiative (Chicago, IL) Delivers electronic PRO scheduled out-
mean age 57 and US Depart- assessments and other patient ap-
years (SD ment of Health assessments to identify pointments
13.39) and Human Ser- psychosocial concerns, through My-
vices (Washing- informational and nutri- Chart. Those
ton, DC), Unit- tional needs. The results who did not
ed States are immediately populat- compete the
ed to the patient’s EHR. assessment at
This integration allows home were
automated triage to multi- provided with
disciplinary care team. an iPad to
complete the
assessment
during appoint-
ment check-in.
Brant et Carevive Physical 121 female pa- Mixed Carevive, Unit- PRO collection and Not collected N/A
al [44] Care (QOL) tients with gy- methods pi- ed States symptoms management
Planning necologic or lot study for patients with breast or
System breast cancer; gynecologic cancer. Col-
83% White; lects PRO and integrates
age mean 56 responses and clinical
years (SD data to create a tailored
10.94); range care plan that provides
28-81 clinical decision support
and self-management ad-
vice to patient and care-
givers.
Hazara et Renal Pa- Physical 190 patients Quality im- Renal Patient PRO collection and Between 2009-2013, N/A
al [45] tientView (QOL) with chronic provement Exchange symptom management tool had 421 regis-
kidney dis- initiative Group, United for patients with chronic tered users and 54%
ease; 34% fe- Kingdom kidney disease. Patients were active.
male; median can document and moni-
age 53 years; tor symptoms and other
range 19-86 health indicators and ac-
cess educational re-
sources.
Hudson Renal Pa- Physical 10 patients Ethnograph- Renal Patient PRO collection and Not collected N/A
et al [46] tientView (QOL) with chronic ic qualita- Exchange symptom management
kidney dis- tive study Group, United for patients with chronic
ease; 20% fe- Kingdom kidney disease. Patients
male; age can document and moni-
mean 59 years tor symptoms and other
health indicators and ac-
cess educational re-
sources.
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Study Portal PCEOLa Sample size Study de- Developer Summary of features Summary of portal Promotion of
name domain and character- sign use use
istics
Pai et al Provider Psycho- 22 male pa- Nonexperi- British Psychosocial support for Mean registered log- N/A
[47] logical or tients with mental Columbia Can- patients with prostate ins over 6 months
psychi- prostate can- posttest on- cer Agency and cancer. Allows patients was 3.4. Medical
atric cer; 95% ly the School of to view a summary of records, appointment
White; mean Health Informa- prostate cancer diagnosis, viewer, and PSAm
age 64 years tion Science at cancer treatment re- monitoring tool were
(51-76) the University ceived, and monitor accessed most fre-
of Victoria, health indicators. Patients quently by users.
Victoria, BC, can also access a treat-
Canada ment decision support
tool, a questionnaire on
distress level, education
on prostate cancer and its
treatments, and a tailored
clinical trial and research
screening tool.
Nahm et CaS- Psycho- 30 patients One group University of Psychosocial support for Not collected Biweekly fol-
al [48] PET n logical or with cancer; pre- or Maryland Medi- patients with cancer. low-up mes-
psychi- 77% female; posttest pi- cal Center, Balti- Provides 12-week con- sages were
atric 33% White; lot study more, MD, tent with six modules in- sent out after
mean age 56 United States cluding transition to sur- initial mes-
years (SD vivorship, nutrition, exer- sage.
13.6) cise, cancer and relation-
ships, fear and mental
health, and stress manage-
ment using mindfulness.
There are goal setting ac-
tivities, discussion
boards, and virtual li-
braries at the end of each
module.
a
PCEOL: palliative care and end-of-life.
b
ACP: advance care planning.
c
HCP: health care proxy.
d
N/A: not applicable.
e
AD: advance directive.
f
EHR: electronic health record.
g
MDPOA: Medical Durable Power of Attorney.
h
QOL: quality of life.
i
PRO: patient-reported outcome.
j
EMR: electronic medical record.
k
PROMIS: Patient-Reported Outcomes Measurement Information System.
l
e-PRO: electronic patient-reported outcome.
m
PSA: prostate-specific antigen
n
CaS-PET: Cancer Survivorship Patient Engagement Toolkit.
users to complete and submit an advance directive that directly
Features of PCEOL Patient Portal Tools integrates into the electronic health record [22,23,35,36], we
Ethical or Legal identified one tool based on My Health Manager (a Kaiser
Permanente portal built through Epic software) that links users
All five tools addressing ethical and legal aspects of care center
to an external website to complete the advance directive [37].
on ACP, including ACP education and the opportunity to
complete documentation of advance directive, or of an appointed Physical
MDPOA or health care proxy. The ACP tools in each of these The identified PCEOL patient portal tools addressing physical
patient portals provide education and a means to facilitate aspects of care focus on improving the quality of life of patients
documentation of advance care preferences. We identified two with serious illness. Four of the five tools identified allow users
tools (PatientSite and MyChart) that use a guided, to complete patient-reported outcome assessments and other
patient-centered questionnaire to enable the completion of an questionnaires electronically [42-46]. The results of the
advance directive [24,33,34]. Although most of the tools allow assessments were automatically integrated into the electronic
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medical record and then used to generate an action. One of the transition to survivorship, nutrition, exercise, cancer and
tools incorporated the Patient-Reported Outcomes Measurement relationships, fear and mental health, and stress management
Information System (PROMIS), which employs using mindfulness. The modules incorporate goal setting,
computer-adaptive tests to measure patient-reported symptoms discussion boards, and virtual libraries.
and health-related quality of life across various medical
conditions [42,43]. Wagner et al [42] administered an
Information on Use or Promotion of Use
assessment that included a subset of PROMIS computer-adapted Portal use measures were described for nearly all (n=10) patient
tests measuring pain interference, fatigue, physical function, portal tools in at least one study. Table 1 illustrates these
depression, and anxiety and a checklist to identify psychosocial, findings in detail. Portal use was most often measured by the
informational, and nutritional needs [43] in patients with mean number of log-ins and duration in minutes [40,41,47],
gynecological cancers. For each outcome, a score above a number of registered users [45], features accessed [38,40,41,47],
specific threshold triggers an alert to the appropriate member or completed activities such as completing an AD or other
of the multidisciplinary care team for further evaluation. This ACP-related documentation [22,24,33-36] or inputting a daily
assessment was also conducted in a larger cohort of adult goal [38].
medical oncology outpatients [42]. Overall, an overview of appointments and medical records were
Similarly, MyAVL (MijnAVL), a patient portal for patients the most frequently accessed features for portals [38,40,41,47].
with breast and non–small cell lung cancer in the Netherlands, The Patient-Centered Toolkit assessed that education on
allows users to complete quality of life and physical activity patients’ problem or condition was the least visited feature;
questionnaires. Users are provided with tailored physical activity however, this could be explained by the study’s in-patient setting
advice based on their responses. The commercially developed where the patients and caregivers had more frequent access to
Carevive Care Planning System allows for the collection of providers [38,39].
patient-reported outcomes in patients with breast and Studies for four of the portals specifically described methods
gynecological cancers [44]. Targeted at both patients and of promoting portal use, either by reminders via electronic
caregivers, the users’ responses were used to create a care plan messages [35,42,48] or in-person [39]. The impact of these
that included clinical decision support and patient education promotions of use is mixed; two of the studies did not collect
and self-management resources. Renal PatientView, developed data on portal use to correspond to their promotion efforts. After
in the United Kingdom, was the only tool identified in patients sending electronic messages prompting patients to complete
with chronic kidney disease [45,46]. Renal PatientView allows their e-PRO assessment before their scheduled appointment,
users to monitor symptoms and other health indicators (eg, Wagner et al [42] found that 80% of recipients read the message,
weight, blood pressure, and blood glucose) electronically and while 33% of them completed the electronic patient-reported
access educational content specific to their diagnosis. outcomes (e-PRO) assessment.
Only one of the tools addressing quality of life, the
User Perspectives
Patient-Centered Tool Kit (PCTK), was designed for use during
acute hospitalization [38,39]. The PCTK has been studied in Usability, acceptability, and user satisfaction were formally
patients admitted to medical intensive care and oncology units evaluated for nine of the identified PCEOL patient portal tools
and their caregivers. Integrated with the patient’s electronic (Table 2). Only two studies have specifically assessed the user
health record, the tool allows users to establish a single recovery perspectives of older adults [37,49]. In general, usability and
goal that can be updated throughout hospitalization. Users can acceptability rankings were high, and users were satisfied with
also access educational content, predischarge checklists, and the tools. Users valued tools that allowed the electronic
navigate their plan of care. collection of patient-reported outcomes and symptoms. Aside
from their perceived convenience, these tools allow users to
Psychological gain a sense of control over their health, improve symptom
Two of the PCEOL patient portal tools addressed the management, and access novel resources [40,41,44,47,48].
psychological aspects of care, primarily providing resources for Users viewed these tools as a means of improving
psychosocial support. The British Columbia Cancer Agency communication. In particular, the integration of tools with
developed the Provider tool for patients with prostate cancer. electronic medical records was valued. In ACP tools, users
This tool allows users to complete a questionnaire on distress appreciated that the advance directive forms were easily
levels and access treatment decision support resources [47]. The retrievable and viewable for their providers and family
tool also provides users with education on prostate cancer, its [23,24,37]. The tools addressing quality of life and psychosocial
treatment, and a personalized clinical trial screening tool. The support were also perceived to improve communication with
Cancer Survivorship Patient Toolkit (CaS-PET) was developed the care team [39,44,47,48]. There was evidence of increased
to provide survivorship care plans for patients with cancer [48]. care plan concordance between patients [39], and users noted
This tool uses a biweekly follow-up contact via secure that the tools better prepared them for their clinical visits
messaging. Each message asks about the patient’s general [44,47,48]. Users of the CaS-PET felt that the tool helped them
condition and support needs and includes links to well beyond determine what questions to ask during their medical
cancer, a web-based resource with six modules that include appointments.
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Table 2. Portal tool usability and satisfaction.
Portal tool Usability sample size Data collection Mean usability or satisfaction scores Comments for improvement
(overall sample size) or qualitative comments
PatientSite [24] • 74 (200) • Qualitative feedback • Patient participants had posi- • Patients made minor sugges-
tive feedback on usability, tool tions to improve the capabil-
prompted patients to take the ity to edit form directly, to
time to think about their HCPa, improve the ease of printing
gave them an opportunity to the form, and to add ability
improve their HCP informa- to appoint an additional
tion, and helped patients tackle HCP.
this difficult topic
MyHealth Con- • 11 (2814) • SUSb • 89 (a total of 70 or greater is • N/Ad
nection (Epic) • 46 (46); 63% fe- • Qualitative feedback typically considered acceptable
[22,23] male; mean age 49 for usability)
years • Patients were generally satis-
fied with the ease of use and
were likely to recommend us-
ing the tool for ACPc documen-
tation to others.
My Health • 24 (24); 71% fe- • Qualitative feedback (fo- • Most participants reported in- • N/A
Manager (Epic) male; 79% White; cus groups) terest in having ADe documen-
[37] mean age 78 years tation features available in the
(SD 5.4) electronic medical record
PCTKf [38] • 18 (239); 10 pa- • SUS • 74 (a total of 70 or greater is • Feedback included sugges-
tients; 50% female; typically considered acceptable tion for improving technical
80% White; 70% for usability) features and displays to en-
>51 years hance clinical communica-
• 8 caregivers; 75% tion.
female; 87% White;
87% >51 years
MyAVL (Mij- • 28 (37) • WUSg; UTAUTh • 3.9 (maximum score of 5, indi- • N/A
nAVL) [40,41] • 92 (92); all female; • WUS; UTAUT cated the highest level of satis- • Focus groups expressed
mean age 49 years faction); 93% reported tool overall satisfaction with
(SD 11.4) easy to use, 69% reported tool portal features, however
valuable addition to health care expressed desire for educa-
experience tional content to be more
• 3.8; 75% reported tool easy to tailored to their specific
use condition
Carevive Care • 94 (121) • SUS • 83 (a total of 70 or greater is • N/A
Planning Sys- typically considered acceptable
tem [44] for usability)
Renal Pa- • 190 (190) [45]; 34% • Investigator-developed • 45% of inactive users cited • N/A
tientView female; median age questionnaire computer or password issues • N/A
[45,46] 53 years; range 19- • Qualitative feedback as primary issue for nonuse;
86 years 37% of inactive users said
• 10 (10); 20% fe- portal did not anything to their
male; mean age 59 relationship with clinicians
years • Patients found the portal valu-
able to help prepare themselves
and family for changes in care
and had better understanding
of how their symptoms, blood
results, and physiological
changes were connected; able
to better involve family in care
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Portal tool Usability sample size Data collection Mean usability or satisfaction scores Comments for improvement
(overall sample size) or qualitative comments
Provider [47] • 22 (22); all male; • Questionnaire not speci- • 88% of respondents rated • N/A
95% White; mean fied overall satisfaction as excellent
age 64 years; range or very good; 88% of respon-
51-76 years dents would continue to use the
tool
CaS-PETi [48] • 30 (30); 77% fe- • Health Website Usability • Most patients (n=22) found the • N/A
male; 33% White; Questionnaire subscale; portal helpful and reported
mean age 56 years open-ended questions having helpful information or
(SD 13.6) that it helped them stay healthy
a
HCP: health care proxy.
b
SUS: Systematic Usability Scale.
c
ACP: advance care planning.
d
N/A: not applicable.
e
AD: advance directive.
f
PCTK: Patient-Centered Tool Kit.
g
WUSQ: Website User Satisfaction.
h
UTAUT: Unified Theory of Acceptance and Use of Technology.
i
CaS-PET: Cancer Survivorship Patient Engagement Toolkit.
who are admitted to the hospital annually who could benefit
Discussion from palliative care and yet do not receive this specialized care
Principal Findings [53]. In addition, people living in rural communities have less
access to palliative care services than their urban counterparts
Patient portals may offer accessible avenues for keeping [54]. Although we recognize that palliative care is highly
individuals with serious illness and their caregivers connected personalized, patient portals offer the opportunity to leverage
to PCEOL resources. Although the use of patient portals among technology to promote access and education regarding PCEOL
patients with serious life-limiting illness is of growing interest, issues. Incorporating PCEOL resources into patient portal
previous studies suggest that patients with serious illness and features may serve to introduce or supplement specialty
their caregivers are potentially extensive users of patient portal palliative care services or bridge the gap where patients have
tools that are commonly available, particularly to access care no access to palliative care.
team information, review laboratory results, and obtain medical
records [50,51]. Interest in using patient portals among this Furthermore, the role of digital health solutions, including
population may be high and potentially an excellent venue for patient portal resources, is more important than ever in the wake
providing PCEOL-specific information and resources. This of the COVID-19 pandemic. Health systems across the United
scoping review of 19 articles described available PCEOL States, and the globe, are forced to incorporate digital care as
features via patient portals tethered to electronic health records. part of their regular repertoire of available patient care as safety
Overall, the review highlighted some of the ways patient portals precautions and social distancing have become the norm [55,56].
are offering PCEOL resources, as well as opportunities for future Individuals who are appropriate for palliative care are highly
work to leverage patient portals to increase access and awareness vulnerable and must be especially considered when addressing
of PCEOL care. how to bring quality virtual health care to individuals during a
pandemic. These patients have an increased risk of contracting
The results identified 12 unique patient portal resources the virus and experiencing related complications (eg,
supporting the following PCEOL domains: ethical or legal (in hospitalization or death) because of their age and health status.
the case of this review, exclusively ACP education; n=5), They have also been uniquely impacted by the pandemic in that
physical (including symptom monitoring, goals of care, and they still require continuous disease management and may
patient-reported outcomes; n=5), and psychological support experience disproportionate exacerbations of psychosocial needs
(n=2). Most resources were targeted toward patient audiences [57]. Finally, people are dying or experiencing bereavement in
(n=9), with the remainder being targeted toward caregivers, or isolation at higher rates in the wake of the pandemic [58,59],
both patients and caregivers. Only two resources focused emphasizing the need for creative palliative care solutions,
specifically on the user characteristics of older adults [37,49], including better access to PCEOL information and resources
which indicates a clear opportunity to improve our for individuals with serious illness and their loved ones.
understanding of use and usability in this high-need patient
population. Nearly all the portals included in this review focused on quality
of life, symptom management, or ACP education or completion
Evidence demonstrates that patients living with serious illnesses of advance directives. ACP may be better leveraged through
and their family members and caregivers can benefit from patient portals than other resource types given its more limited
palliative care [52]. However, there are nearly 1 million patients
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and specific goal than some of the more complex and nuanced solutions tailored to and especially suited to the needs of older
needs and components inherent in PCEOL care. Similarly, patients [68]. Future research on PCEOL patient portal
PROMIS tools and other electronic mechanisms for development, use, and acceptability should explicitly incorporate
patient-reported outcomes are well suited for patient portals. older adult needs and feedback.
Although the legal and physical aspects are essential pieces of Limitations
quality and holistic PCEOL services, equally important are the To the best of our knowledge, this scoping review is the first
psychological and spiritual aspects, as well as end-of-life to identify and describe patient portals that offer PCEOL
education around hospice. Only two of the portals reviewed features. However, this is not without limitations. First, the
focused on the psychological needs of patients with serious review only included results from academic literature and may
illness [47,49]. None of the portals included in the review be missing commercially available portals that were developed
offered features addressing grief and bereavement or information by industry without concurrent publication in the peer-reviewed
about hospice or comfort care. Despite the evidence supporting literature. In addition, we did not evaluate the full text of articles
the benefits of hospice care [60-62], lack of information and in which we were unable to retrieve access, potentially
understanding remains one of the most common barriers to overlooking additional PCEOL patient portal resources.
hospice use [63-65]. Furthermore, bereaved individuals and Although some of the articles described the efficacy on clinically
families often benefit from educational resources related to the meaningful outcomes, we did not address this information as it
grief process [66]. Future research and development on portal was beyond the scope of our scoping view. Future research
tools for patients with serious illness and their family members should focus on the efficacy of such tools. Finally, this review
should emphasize psychological and spiritual PCEOL domains had a small sample size of articles (n=19) covering 12 different
and consider tools and educational resources regarding grief, patient portals that are predominantly US based, potentially
bereavement, and hospice. limiting the results to a Westernized PCEOL perspective.
It is important to emphasize the special consideration of older
Conclusions
adult patients with serious illness and patient portal tool
development, availability, and adoption among PCEOL The scoping review highlighted an important gap in PCEOL
populations. In total, 80% of older adults in the United States resources offered via patient portals linked to electronic health
have one or more chronic conditions, many of which can lead records, as well as opportunities for leveraging patient portals
to serious illness [9]. As the older adult population continues as a means of offering education and support for patients with
to grow, and subsequently the number of older adults serious illness. The results suggest that there are ongoing efforts
experiencing serious illness increases, the focus of patient to offer various PCEOL supports through patient portals,
portals’ development and research must continue to include the particularly with a focus on ACP. However, our review resulted
perspectives and needs of patients aged ≥65 years. Despite the in a small number of portals that met our criteria, of which
currently low adoption rate of portals by older patients and included only a few of the expansive elements of PCEOL care.
caregivers, research demonstrates that there is an interest in Future research and development of patient portals would benefit
such tools among this group [37,67], an interest that might well from offering comprehensive PCEOL features to increase access
be addressed by improving the design and availability of and education for patients experiencing serious illness.
Acknowledgments
This research was funded by the Medical Student Training in Aging Research Program, the National Institute on Aging
(T35AG026736), the John A. Hartford Foundation, and the Lillian R. Gleitsman Foundation. JP was supported by the National
Institute on Aging (NIA K76AG059934).
Conflicts of Interest
None declared.
Multimedia Appendix 1
Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Review (PRISMA-ScR) checklist.
[PDF File (Adobe PDF File), 188 KB-Multimedia Appendix 1]
Multimedia Appendix 2
Scoping review search terms.
[PDF File (Adobe PDF File), 52 KB-Multimedia Appendix 2]
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