scholarly journals Patient decision aid for contralateral prophylactic mastectomy for use in the consultation: a feasibility study

2019 ◽  
Vol 26 (2) ◽  
Author(s):  
J. E. Squires ◽  
D. Stacey ◽  
M. Coughlin ◽  
M. Greenough ◽  
A. Roberts ◽  
...  
Keyword(s):  
Health Care ◽  
Knowledge Translation ◽  
Health Care Professionals ◽  
Decision Aid ◽  
Prophylactic Mastectomy ◽  
Contralateral Prophylactic Mastectomy ◽  
Shared Decision ◽  
Patient Decision Aid ◽  
Unilateral Breast Cancer ◽  
Patient Decision

Background Rates of contralateral prophylactic mastectomy (cpm) continue to rise internationally despite evidence-based guidance strongly discouraging its use in most women with unilateral breast cancer. The purpose of the present study was to develop and assess the feasibility of a knowledge translation tool [a patient decision aid (da)] designed to enhance evidence-informed shared decision-making about cpm.Methods A consultation da was developed using the Ottawa Patient Decision Aid Development eTraining in consultation with clinicians and knowledge translation experts. The final da was then assessed for feasibility with health care professionals and patients across Canada. The assessment involved a survey completed online (health care professionals) or by telephone (patients). Survey data were analyzed using descriptive statistics for closed-ended questions and qualitative content analysis for open-ended questions.Results The 51 participants who completed the survey included 39 health care professionals and 12 patients. The da was acceptable; 88% of participants viewed it as having the right amount of information or slightly more or less information than they would like. Almost all participants (98%) felt that the da would prepare patients to make better decisions. The aid was perceived to be usable, with 73% of participants stating that they would be willing to use or share the da.Conclusions The cpm patient da developed for the present study was viewed by health care professionals and patients across Canada to be acceptable and usable during the clinical consultation. It holds promise as a knowledge translation tool to be used by clinicians in consultation with women who have unilateral breast cancer to enhance evidence-informed and shared decision-making with respect to undergoing cpm.

scholarly journals Mismatch between health-care professionals' and patients' views on a diabetes patient decision aid: a qualitative study

2015 ◽  
Vol 19 (2) ◽  
pp. 427-436 ◽  
Author(s):  
Ping Yein Lee ◽  
Ee Ming Khoo ◽  
Wah Yun Low ◽  
Yew Kong Lee ◽  
Khatijah Lim Abdullah ◽  
...  
Keyword(s):  
Health Care ◽  
Qualitative Study ◽  
Health Care Professionals ◽  
Decision Aid ◽  
Diabetes Patient ◽  
Patient Decision Aid ◽  
Patient Decision

scholarly journals Exploring reasons for overuse of contralateral prophylactic mastectomy in Canada

2019 ◽  
Vol 26 (4) ◽  
Author(s):  
J. E. Squires ◽  
S. N. Simard ◽  
S. Asad ◽  
D. Stacey ◽  
I. D. Graham ◽  
...  
Keyword(s):  
Health Care ◽  
Health Care Professional ◽  
Health Care Professionals ◽  
Prophylactic Mastectomy ◽  
Theoretical Domains Framework ◽  
Contralateral Prophylactic Mastectomy ◽  
Structured Interviews ◽  
Unilateral Breast Cancer ◽  
Professional Groups ◽  
Qualitative Descriptive

Background Contralateral prophylactic mastectomy (cpm) in women with known unilateral breast cancer (bca) has been increasing despite the lack of supportive evidence. The purpose of the present study was to identify the determinants of cpm in women with unilateral bca.Methods This qualitative descriptive study used semi-structured interviews informed by the Theoretical Domains Framework. We interviewed 74 key informants (surgical oncologists, plastic surgeons, medical oncologists, radiation oncologists, nurses, women with bca) across Canada. Interviews were analyzed using thematic analysis and an analysis for shared and discipline-specific beliefs.Results In total, 58 factors influencing the use of cpm were identified: 26 factors shared by various health care professional groups, 15 discipline-specific factors (identified by a single health care professional group), and 17 factors shared by women with unilateral bca. Health care professionals identified more factors discouraging the use of cpm (n = 26) than encouraging its use (n = 15); women with bca identified more factors encouraging use of cpm (n = 12) than discouraging its use (n = 5). The factor most commonly identified by health care professionals that encouraged cpm was lack of awareness of existing evidence or guidelines for the appropriate use of cpm (n = 44, 75%). For women with bca, the factor most likely influencing their decision for cpm was wanting a better esthetic outcome (n = 14, 93%).Conclusions Multiple factors discouraging and encouraging the use of cpm in unilateral bca were identified. Those factors identify potential individual, team, organization, and system targets for behaviour change interventions to reduce cpm.

scholarly journals Patient decision aid based on multi-criteria decision analysis for disease-modifying drugs for multiple sclerosis: prototype development

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
I. E. H. Kremer ◽  
P. J. Jongen ◽  
S. M. A. A. Evers ◽  
E. L. J. Hoogervorst ◽  
W. I. M. Verhagen ◽  
...  
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Decision Aid ◽  
Healthcare Professionals ◽  
Treatment Options ◽  
Shared Decision ◽  
Patient Decision Aid ◽  
Disease Modifying Drugs ◽  
Patient Decision ◽  
Further Development

Abstract Background Since decision making about treatment with disease-modifying drugs (DMDs) for multiple sclerosis (MS) is preference sensitive, shared decision making between patient and healthcare professional should take place. Patient decision aids could support this shared decision making process by providing information about the disease and the treatment options, to elicit the patient’s preference and to support patients and healthcare professionals in discussing these preferences and matching them with a treatment. Therefore, a prototype of a patient decision aid for MS patients in the Netherlands—based on the principles of multi-criteria decision analysis (MCDA) —was developed, following the recommendations of the International Patient Decision Aid Standards. MCDA was chosen as it might reduce cognitive burden of considering treatment options and matching patient preferences with the treatment options. Results After determining the scope to include DMDs labelled for relapsing-remitting MS and clinically isolated syndrome, users’ informational needs were assessed using focus groups (N = 19 patients) and best-worst scaling surveys with patients (N = 185), neurologists and nurses (N = 60) to determine which information about DMDs should be included in the patient decision aid. Next, an online format and computer-based delivery of the patient decision aid was chosen to enable embedding of MCDA. A literature review was conducting to collect evidence on the effectiveness and burden of use of the DMDs. A prototype was developed next, and alpha testing to evaluate its comprehensibility and usability with in total thirteen patients and four healthcare professionals identified several issues regarding content and framing, methods for weighting importance of criteria in the MCDA structure, and the presentation of the conclusions of the patient decision aid ranking the treatment options according to the patient’s preferences. Adaptations were made accordingly, but verification of the rankings provided, validation of the patient decision aid, evaluation of the feasibility of implementation and assessing its value for supporting shared decision making should be addressed in further development of the patient decision aid. Conclusion This paper aimed to provide more transparency regarding the developmental process of an MCDA-based patient decision aid for treatment decisions for MS and the challenges faced during this process. Issues identified in the prototype were resolved as much as possible, though some issues remain. Further development is needed to overcome these issues before beta pilot testing with patients and healthcare professionals at the point of clinical decision-making can take place to ultimately enable making conclusions about the value of the MCDA-based patient decision aid for MS patients, healthcare professionals and the quality of care.

scholarly journals Decision Making when Cancer Becomes Chronic: A Decisional Needs Assessment of Medullary Thyroid Cancer Patients’, Families’, and Providers’ Needs for a Web-based Patient Decision Aid (Preprint)

2021 ◽  
Author(s):  
Danielle Shojaie ◽  
Aubri S Hoffman ◽  
Ruth Amaku ◽  
Maria E Cabanillas ◽  
Julie Ann Sosa ◽  
...  
Keyword(s):  
Decision Making ◽  
Decision Support ◽  
Needs Assessment ◽  
Shared Decision Making ◽  
Decision Aid ◽  
Chronic Phase ◽  
Shared Decision ◽  
Patient Decision Aid ◽  
Web Based ◽  
Patient Decision

BACKGROUND In cancers with a chronic phase, patients and family caregivers may face difficult decisions such as whether to start a novel therapy, whether to enroll in a clinical trial, and when to stop treatment. These decisions are complex, require an understanding of uncertainty, and necessitate consideration of patients’ informed preferences. For some cancers, such as medullary thyroid carcinoma, these decisions may also involve significant out-of-pocket costs and effects on family members. Providers expressed a need for web-based interventions that can be delivered between consultations to provide education and prepare patients and families for discussing these decisions. To ensure these tools are effective, usable, and understandable, studies are needed to identify patients’, families’, and providers’ primary decision-making needs and optimal design strategies for a web-based patient decision aid. OBJECTIVE Following international guidelines for development of a web-based patient decision aid, the objectives of this study were to: 1) engage potential users to guide development; 2) review the existing literature and available tools; 3) assess users’ decision-making experiences, needs, and design recommendations; and 4) identify shared decision-making approaches to address each need. METHODS This study used the Decisional Needs Assessment approach, including creating a Stakeholder Advisory Panel, mapping decision pathways, conducting an environmental scan of existing materials, and administering a decisional needs assessment questionnaire. Thematic analyses identified the current decision-making pathways, unmet decision-making needs, and decision support strategies to meet each need. RESULTS Stakeholders reported wide heterogeneity in decision timing and pathways. Relevant existing materials included two systematic reviews, 9 additional papers, and multiple educational websites, but nothing that met the criteria of a patient decision aid. Patients and family members emphasized needing plain language (46 of 54, 85%), shared decision making (45 of 54, 83%), and help with family discussions (39 of 54, 72%). Additional needs included information about uncertainty, lived experience, and costs. Providers (n = 10) reported needing interventions that address misinformation (9 of 10, 90%), foster realistic expectations (9 of 10, 90%), and address mistrust in clinical trials (5 of 10, 50%). Additional needs included provider tools to support shared decision making. Both groups recommended designing a web-based patient decision aid that can be tailored (64 of 64, 100%) and delivered on a hospital website (53 of 64, 83%), and that focuses on quality of life (45 of 64, 70%) and provides step-by-step guidance (43 of 64, 67%). The study team identified best practices to meet each need, which are presented in the proposed Decision Support Design Guide. CONCLUSIONS Patients, families, and providers report multifaceted decision support needs during the chronic phase of cancer. Web-based patient decision aids are needed that provide tailored support over time, and explicitly address uncertainty, quality of life, realistic expectations, and effects on families.

scholarly journals Construction of a patient decision aid for the treatment of uncomplicated urinary tract infection in primary care

2020 ◽  
Author(s):  
Yves-Marie VINCENT ◽  
Adèle FRACHON ◽  
Clotilde BUFFETEAU ◽  
Guillaume CONORT
Keyword(s):  
Primary Care ◽  
Decision Making ◽  
Urinary Tract Infection ◽  
Urinary Tract ◽  
Tract Infection ◽  
Decision Aid ◽  
Uncomplicated Urinary Tract Infection ◽  
Shared Decision ◽  
Patient Decision Aid ◽  
Patient Decision

Abstract Background: Uncomplicated urinary tract infection (uUTI) is a frequent disorder in general practice. The risk of developing pyelonephritis remains low after uUTI, nonetheless, empiric antibiotic therapy is frequently prescribed for symptomatic purposes. This can lead to adverse effects and antibiotic resistance. Furthermore, patients sometimes wish to avoid taking antibiotics. Some European countries recommend discussing a delayed prescription with the patient and developing a shared decision. The aim of our study is to develop a patient decision aid (PtDA) that can be used in primary care to make a shared decision about whether to treat uUTI with antibiotics or not.Methods: We followed the steps recommended by the International Patient Decision Aids Standards, with a scoping phase, a design phase (including focus groups and literature review),and an alpha-testing phase. A steering group, made up of patients and physicians, met throughout the study to develop a draft and then a final version of a prototype PtDA.Results: The information included in the PtDA is the definition of uUTI, information on the options, their benefits, risks, and consequences, based on a review of the literature. The results of the focus group made it possible to determine the patient's values and preferences to be considered in decision-making, namely: the discomfort felt, the impact on daily life, the representations of antibiotics, and the position relative to the risk of adverse effect. The choices of presentation, organisation and design are the result of the work of the steering group, improved by feedback from alpha testing.Conclusions: Our results confirm a need for shared decision-making and the equipoise in this situation. More advice from outside physicians is still lacking. This PtDA needs to be validated in a beta-testing phase, and then tested in a clinical study comparing its use with the systematic prescription approach.

scholarly journals Construction of a patient decision aid for the treatment of uncomplicated urinary tract infection in primary care

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Yves-Marie Vincent ◽  
Adèle Frachon ◽  
Clotilde Buffeteau ◽  
Guillaume Conort
Keyword(s):  
Primary Care ◽  
Decision Making ◽  
Urinary Tract Infection ◽  
Urinary Tract ◽  
Tract Infection ◽  
Decision Aid ◽  
Uncomplicated Urinary Tract Infection ◽  
Shared Decision ◽  
Patient Decision Aid ◽  
Patient Decision

Abstract Background Uncomplicated urinary tract infection (uUTI) is very common among women in primary care. The risk of developing pyelonephritis remains low after uUTI, nonetheless, empiric antibiotic therapy is frequently prescribed for symptomatic purposes. This may lead to adverse effects and antibiotic resistance. Furthermore, patients may express the will to limit the use of antibiotics. Some European countries recommend discussing a delayed prescription with the patient and developing a shared decision. The aim of this study is to create a patient decision aid (PtDA) used in primary care settings to make a shared decision between practitioners and women about whether or not to treat uUTI with antibiotics. Methods We followed the steps recommended by the International Patient Decision Aids Standards, with a scoping phase, a design phase (including focus groups and literature review), and an alpha-testing phase. A steering group, made of patients and physicians, met throughout the study to develop a prototype PtDA. Results The information included in the PtDA is the definition of uUTI, information on the options, their benefits, risks, and consequences, based on a review of the literature. The results of the focus group made possible to determine the patient’s values and preferences to consider in decision-making, including: the discomfort felt, the impact on daily life, patients’ perceptions of antibiotics, and the position relative to the risk of adverse effect. The choices in presentation, organisation and design are the result of the work of the steering group, improved by feedback from alpha testing. We confirmed the need for shared decision-making and the equipoise in this situation. Conclusions We developed a PtDA to be used in primary care for sharing decision on the use of antibiotic in uUTI. It needs to be validated in a beta-testing phase, with complementary advice from peers, and then tested in a clinical study comparing its use with the systematic prescription approach.

Study protocols for the development and randomized controlled pilot trial of a patient decision aid to facilitate women's choice between oral and LAI ART for HIV (Preprint)

2021 ◽  
Author(s):  
Morgan M. Philbin ◽  
Tara McCrimmon ◽  
Victoria Shaffer ◽  
Deanna Kerrigan ◽  
Margaret Pereyra ◽  
...  
Keyword(s):  
Decision Making ◽  
Mixed Methods ◽  
Decision Aid ◽  
Phase 1 ◽  
Shared Decision ◽  
Patient Decision Aid ◽  
Phase 3 ◽  
Web Based ◽  
Randomized Controlled ◽  
Patient Decision

BACKGROUND Many women with HIV (WWH) have suboptimal adherence to oral antiretroviral therapy (ART) due to multilevel barriers to HIV care access and retention. A long-acting injectable (LAI) version of ART was approved by the Food and Drug Administration in January 2021 and has the potential to overcome many of these barriers by eliminating the need for daily pill-taking. However, it may not be optimal for all WWH. It is critical to develop tools that facilitate patient-provider shared decision making about oral versus LAI ART modalities to promote women’s adherence and long-term HIV outcomes. OBJECTIVE This study will develop and pilot test a web-based patient decision aid, called i.ART+support (iARTs). This decision aid aims to support shared decision-making between WWH and their providers, and help women choose between oral and LAI HIV treatment. METHODS The study will occur in three phases. In Phase 1, we will utilize a mixed-methods approach to collect data from WWH and medical and social service providers to inform i.ARTs content. During Phase 2, we will conduct focus groups with WWH and providers to refine i.ARTs content and develop the web-based decision aid. In Phase 3, i.ARTs will be tested in a randomized controlled trial (RCT) with n=180 women in Miami, FL and assessed for feasibility, usability and acceptability, as well as to evaluate the associations between receiving i.ARTs and viral suppression, ART refills, and clinic attendance. RESULTS Phase 1 participant recruitment began in September 2021. CONCLUSIONS This study is the first to develop a web-based patient decision aid to support WWH choices between oral and LAI ART. Its strengths include the incorporation of both patient and provider perspectives, a mixed-methods design, and implementation in a real-world clinical setting. CLINICALTRIAL We will apply for Clinicaltrials.gov registration prior to Phase 3 when we enroll our first participant in the RCT. This is anticipated to occur in April 2023.

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