Evaluation of an advance care planning web-based resource: applicability for cancer treatment patients

2017 ◽  
Vol 26 (3) ◽  
pp. 853-860 ◽  
Author(s):  
Martha A. Cresswell ◽  
Carole A. Robinson ◽  
Gillian Fyles ◽  
Joan L. Bottorff ◽  
Rebecca Sudore
Keyword(s):  
Cancer Treatment ◽  
Advance Care Planning ◽  
Care Planning ◽  
Web Based ◽  
Advance Care

scholarly journals Information needs of patients with chronic diseases and their relatives for web-based advance care planning: a qualitative interview study

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Doris van der Smissen ◽  
Judith A. C. Rietjens ◽  
Lisette van Gemert-Pijnen ◽  
Sandra van Dulmen ◽  
Agnes van der Heide ◽  
...  
Keyword(s):  
Chronic Diseases ◽  
Advance Care Planning ◽  
Information Needs ◽  
Care Planning ◽  
Web Based ◽  
Disease Trajectory ◽  
Search Terms ◽  
Practical Support ◽  
Advance Care ◽  
Search For Information

Abstract Background Advance care planning (ACP) enables persons to identify preferences for future treatment and care, and to discuss, record and review these preferences. However, the uptake of ACP among patients with chronic diseases is relatively low. Web-based ACP programs can support patients and their relatives in ACP. However, information needs of patients and their relatives for ACP are unknown. The aim of this study is to explore information needs of patients with chronic disease and their relatives for web-based ACP. Methods We conducted semi-structured interviews with patients with chronic diseases and relatives at their home or at the study center. In three cases, the patient and relative were paired since they preferred to be interviewed together. We asked about information they would search for when to start with ACP, where they would search for information, what search terms they would use on the Internet, and what content and information they would consider important on an ACP website. The interviewer asked participants to clarify their responses during the interview. We used thematic analysis to analyze the interviewees’ responses. Results We interviewed nine patients with different chronic diseases including amyotrophic lateral sclerosis (ALS), multiple sclerosis (MS), chronic obstructive pulmonary disease (COPD) and kidney diseases, and seven relatives, namely partners or (adult) children. The interviewees were aged 24 to 80 years, nine were female and seven were male. Both patients with a chronic disease and relatives mentioned comparable information needs. Many interviewees indicated they would use the Internet to search for information about ACP. Mentioned search terms were “advance care planning”, “treatment plan”, “disease trajectory” and names of patient associations. Information needs concerned their disease trajectory and quality of life, medical treatment decisions, practical support in arranging care, the concept of ACP and guidance in ACP, communication of treatment and care preferences, peer support of others with chronic diseases, and information for relatives. Many appreciated encouragement of their healthcare providers to take a pro-active role in ACP. Conclusions We conclude that information needs for ACP included guidance in ACP, support in making decisions about medical treatment, and practical support in arranging care. We recommend adapting web-based ACP information to the information needs of patients and their relatives to increase its findability, uptake and usefulness.

scholarly journals The Feasibility and Effectiveness of Web-Based Advance Care Planning Programs: Scoping Review

10.2196/15578 ◽  
2020 ◽  
Vol 22 (3) ◽  
pp. e15578 ◽  
Author(s):  
Doris van der Smissen ◽  
Anouk Overbeek ◽  
Sandra van Dulmen ◽  
Lisette van Gemert-Pijnen ◽  
Agnes van der Heide ◽  
...  
Keyword(s):  
United States ◽  
Health Care ◽  
Advance Care Planning ◽  
Health Care Professionals ◽  
The United States ◽  
Care Planning ◽  
Web Based ◽  
Future Care ◽  
Advance Care ◽  
Study Designs

Background Advance care planning (ACP) is a process with the overall aim to enhance care in concordance with patients’ preferences. Key elements of ACP are to enable persons to define goals and preferences for future medical treatment and care, to discuss these with family and health care professionals, and to document and review these if appropriate. ACP is usually conducted through personal conversations between a health care professional, a patient, and—if appropriate—family members. Although Web-based ACP programs have the potential to support patients in ACP, their effectiveness is unknown. Objective This study aimed to assess the feasibility and effectiveness of Web-based, interactive, and person-centered ACP programs. Methods We systematically searched for quantitative and qualitative studies evaluating Web-based, interactive, and person-centered ACP programs in seven databases including EMBASE, Web of Science, Cochrane Central and Google Scholar. Data on the characteristics of the ACP programs’ content (using a predefined list of 10 key elements of ACP), feasibility, and effectiveness were extracted using a predesigned form. Results Of 3434 titles and abstracts, 27 studies met the inclusion criteria, evaluating 11 Web-based ACP programs—10 were developed in the United States and one in Ireland. Studied populations ranged from healthy adults to patients with serious conditions. Programs typically contained the exploration of goals and values (8 programs), exploration of preferences for treatment and care (11 programs), guidance for communication about these preferences with health care professionals or relatives (10 programs), and the possibility to generate a document in which preferences can be recorded (8 programs). Reportedly, participants were satisfied with the ACP programs (11/11 studies), considering them as easy to use (8/8 studies) and not burdensome (7/8 studies). Designs of 13 studies allowed evaluating the effectiveness of five programs. They showed that ACP programs significantly increased ACP knowledge (8/8 studies), improved communication between patients and their relatives or health care professionals (6/6 studies), increased ACP documentation (6/6 studies), and improved concordance between care as preferred by the patients and the decisions of clinicians and health care representatives (2/3 studies). Conclusions Web-based, interactive, and person-centered ACP programs were mainly developed and evaluated in the United States. They contained the key elements of ACP, such as discussing and documenting goals and preferences for future care. As participants considered programs as easy to use and not burdensome, they appeared to be feasible. Among the 13 studies that measured the effectiveness of programs, improvement in ACP knowledge, communication, and documentation was reported. The concordance between preferred and received care is yet understudied. Studies with high-quality study designs in different health care settings are warranted to further establish the feasibility and effectiveness of Web-based ACP programs.

scholarly journals Advance Care Planning Among Users of a Patient Portal During the COVID-19 Pandemic: Retrospective Observational Study (Preprint)

2020 ◽  
Author(s):  
Jennifer D Portz ◽  
Adreanne Brungardt ◽  
Prajakta Shanbhag ◽  
Elizabeth W Staton ◽  
Seuli Bose-Brill ◽  
...  
Keyword(s):  
Advance Care Planning ◽  
Early Phase ◽  
Medical Decision ◽  
Treatment Preferences ◽  
Patient Portal ◽  
Care Planning ◽  
Patient Portals ◽  
Web Based ◽  
Patient Goals ◽  
Advance Care

BACKGROUND Advance care planning is the process of discussing health care treatment preferences based on patients’ personal values, and it often involves the completion of advance directives. In the first months of 2020, a novel coronavirus, severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), began circulating widely in the American state of Colorado, leading to widespread diagnosis of coronavirus disease (COVID-19), hospitalizations, and deaths. In this context, the importance of technology-based, non–face-to-face methods to conduct advance care planning via patient portals has increased. OBJECTIVE The aim of this study was to determine the rates of use of a web-based advance care planning tool through a health system–based electronic patient portal both before and in the early months of the COVID-19 pandemic. METHODS In 2017, we implemented web-based tools through the patient portal of UCHealth’s electronic health record (EHR) for patients to learn about advance care planning and complete an electronically signed medical durable power of attorney (MDPOA) to legally appoint a medical decision maker. Patients accessing the portal can complete and submit a legally valid MDPOA, which becomes part of their medical record. We collected data on the patients’ date of MDPOA completion, use of advance care planning messaging, age, sex, and geographic location during the early phase of the COVID-19 pandemic (December 29, 2019, to May 30, 2020). RESULTS Over a 5-month period that includes the early phase of the COVID-19 pandemic in Colorado, total monthly use of the advance care planning portal tool increased from 418 users in January to 1037 users in April and then decreased slightly to 815 users in May. The number of MDPOA forms submitted per week increased 2.4-fold after the stay-at-home order was issued in Colorado on March 26, 2020 (<i>P</i>&lt;.001). The mean age of the advance care planning portal users was 47.7 years (SD 16.1), and 2206/3292 (67.0%) were female. Women were more likely than men to complete an MDPOA, particularly in younger age groups (<i>P</i>&lt;.001). The primary use of the advance care planning portal tools was the completion of an MDPOA (3138/3292, 95.3%), compared to sending an electronic message (148/3292, 4.5%). Over 50% of patients who completed an MDPOA did not have a prior agent in the EHR. CONCLUSIONS Use of a web-based patient portal to complete an MDPOA increased substantially during the first months of the COVID-19 pandemic in Colorado. There was an increase in advance care planning that corresponded with state government shelter-in-place orders as well as public health reports of increased numbers of COVID-19 cases and deaths. Patient portals are an important tool for providing advance care planning resources and documenting medical decision makers during the pandemic to ensure that medical treatment aligns with patient goals and values.

scholarly journals Key stakeholders' perspectives on a Web-based advance care planning tool for advanced lung disease

2015 ◽  
Vol 30 (6) ◽  
pp. 1418.e7-1418.e12 ◽  
Author(s):  
Jared Chiarchiaro ◽  
Natalie C. Ernecoff ◽  
Praewpannarai Buddadhumaruk ◽  
Kimberly J. Rak ◽  
Robert M. Arnold ◽  
...  
Keyword(s):  
Lung Disease ◽  
Advance Care Planning ◽  
Care Planning ◽  
Planning Tool ◽  
Web Based ◽  
Key Stakeholders ◽  
Advance Care

scholarly journals Advance Care Planning Among Users of a Patient Portal During the COVID-19 Pandemic: Retrospective Observational Study

10.2196/21385 ◽  
2020 ◽  
Vol 22 (8) ◽  
pp. e21385
Author(s):  
Jennifer D Portz ◽  
Adreanne Brungardt ◽  
Prajakta Shanbhag ◽  
Elizabeth W Staton ◽  
Seuli Bose-Brill ◽  
...  
Keyword(s):  
Advance Care Planning ◽  
Early Phase ◽  
Medical Decision ◽  
Treatment Preferences ◽  
Patient Portal ◽  
Care Planning ◽  
Patient Portals ◽  
Web Based ◽  
Patient Goals ◽  
Advance Care

Background Advance care planning is the process of discussing health care treatment preferences based on patients’ personal values, and it often involves the completion of advance directives. In the first months of 2020, a novel coronavirus, severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), began circulating widely in the American state of Colorado, leading to widespread diagnosis of coronavirus disease (COVID-19), hospitalizations, and deaths. In this context, the importance of technology-based, non–face-to-face methods to conduct advance care planning via patient portals has increased. Objective The aim of this study was to determine the rates of use of a web-based advance care planning tool through a health system–based electronic patient portal both before and in the early months of the COVID-19 pandemic. Methods In 2017, we implemented web-based tools through the patient portal of UCHealth’s electronic health record (EHR) for patients to learn about advance care planning and complete an electronically signed medical durable power of attorney (MDPOA) to legally appoint a medical decision maker. Patients accessing the portal can complete and submit a legally valid MDPOA, which becomes part of their medical record. We collected data on the patients’ date of MDPOA completion, use of advance care planning messaging, age, sex, and geographic location during the early phase of the COVID-19 pandemic (December 29, 2019, to May 30, 2020). Results Over a 5-month period that includes the early phase of the COVID-19 pandemic in Colorado, total monthly use of the advance care planning portal tool increased from 418 users in January to 1037 users in April and then decreased slightly to 815 users in May. The number of MDPOA forms submitted per week increased 2.4-fold after the stay-at-home order was issued in Colorado on March 26, 2020 (P<.001). The mean age of the advance care planning portal users was 47.7 years (SD 16.1), and 2206/3292 (67.0%) were female. Women were more likely than men to complete an MDPOA, particularly in younger age groups (P<.001). The primary use of the advance care planning portal tools was the completion of an MDPOA (3138/3292, 95.3%), compared to sending an electronic message (148/3292, 4.5%). Over 50% of patients who completed an MDPOA did not have a prior agent in the EHR. Conclusions Use of a web-based patient portal to complete an MDPOA increased substantially during the first months of the COVID-19 pandemic in Colorado. There was an increase in advance care planning that corresponded with state government shelter-in-place orders as well as public health reports of increased numbers of COVID-19 cases and deaths. Patient portals are an important tool for providing advance care planning resources and documenting medical decision makers during the pandemic to ensure that medical treatment aligns with patient goals and values.

scholarly journals OP30 Scoping review about web-based advance care planning programs

2019 ◽  
Author(s):  
D van der Smissen ◽  
A Overbeek ◽  
S Van Dulmen ◽  
J Van Gemert-Pijnen ◽  
A van der Heide ◽  
...  
Keyword(s):  
Advance Care Planning ◽  
Scoping Review ◽  
Care Planning ◽  
Web Based ◽  
Advance Care

Demenz aus palliativmedizinischer Perspektive: warum ein krankheitsspezifisches Advance Care Planning wichtig ist

2018 ◽  
Vol 75 (2) ◽  
pp. 105-111 ◽  
Author(s):  
Ralf J. Jox ◽  
Francesca Bosisio ◽  
Eve Rubli Truchard
Keyword(s):  
Palliative Care ◽  
Advance Care Planning ◽  
Care Planning ◽  
Advance Care ◽  
Menschen Mit Demenz

Zusammenfassung. Die Palliative Care muss sich im Zuge des demographischen Wandels vieler Gesellschaften rund um den Globus tiefgreifend wandeln. Sie muss mehr und mehr mit der Geriatrie zusammenarbeiten und geriatrische Expertise integrieren. Eine der zentralen Herausforderungen Geriatrischer Palliative Care ist die ethisch angemessene Therapieentscheidung für Menschen, die nicht mehr urteilsfähig sind. Nachdem der bisherige Ansatz herkömmlicher Patientenverfügungen erwiesenermassen enttäuscht hat, wird aktuell, gerade auch in deutschsprachigen Ländern, das systemische Konzept des Advance Care Planning (ACP) verfolgt. In diesem Artikel wird zunächst ACP mit seinen Zielen, Elementen und Effekten vorgestellt. Sodann wird gezeigt, weshalb es für Menschen mit Demenz eines adaptierten ACP-Programms bedarf und was ein solches demenzspezifisches ACP beinhalten muss.

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