scholarly journals Development of a patient decision aid for breast reconstruction after mastectomy: patient perspectives on decision making

2017 ◽  
Vol 17 (5) ◽  
pp. 57
Author(s):  
Montse Moharra ◽  
Miriam De la flor ◽  
Immaculada De Molina ◽  
Joan MV Pons
Keyword(s):  
Decision Making ◽  
Breast Reconstruction ◽  
Decision Aid ◽  
Patient Perspectives ◽  
Patient Decision Aid ◽  
Patient Decision ◽  
Mastectomy Patient

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.

Using a patient decision aid about insulin treatment in type 2 diabetes clinics

2021 ◽  
Vol 16 (1) ◽  
pp. 76-108
Author(s):  
Ayeshah Syed
Keyword(s):  
Type 2 Diabetes ◽  
Decision Making ◽  
Decision Aid ◽  
Insulin Treatment ◽  
Treatment Phase ◽  
Activity Analysis ◽  
Patient Decision Aid ◽  
Healthcare Settings ◽  
Patient Decision

The Candlin Researcher AwardThe low uptake of insulin leaves many Malaysians with type 2 diabetes at risk of developing complications. To improve decision making about insulin treatment, a patient decision aid (PDA) was developed for use with patients. However, although it is generally accepted that PDAs can support informed and shared decision making, there is limited discursive data showing how they are used in doctor–patient consultations. This paper reports on activity analysis of clinic consultations in which a PDA about insulin treatment was used. Eleven consultations with diverse participants conducted in three healthcare settings in Malaysia were systematically mapped to identify structural, interactional and thematic patterns. Two main phases of Assessment and Treatment were identified, with doctors generally participating more than patients. Mapping of the Treatment phase showed that structural patterns depended on two main factors: whether patients had read the PDA and whether they responded negatively or positively towards insulin. While mapping is only a preliminary stage of activity analysis, the findings offer insights into structural, interactional and thematic patterns in PDA use at the level of the whole consultation. They also point towards key areas for closer analysis of discursive practices.

scholarly journals Health technology assessment–based development of a Spanish breast cancer patient decision aid

2011 ◽  
Vol 27 (4) ◽  
pp. 363-368 ◽  
Author(s):  
Fátima Izquierdo ◽  
Javier Gracia ◽  
Mercedes Guerra ◽  
Juan Antonio Blasco ◽  
Elena Andradas
Keyword(s):  
Breast Cancer ◽  
Decision Making ◽  
Cancer Patient ◽  
Breast Cancer Patient ◽  
Technology Assessment ◽  
Decision Aid ◽  
Healthcare Professionals ◽  
Health Technology ◽  
Patient Decision Aid ◽  
Patient Decision

Objectives: The aim of this study was to develop a breast cancer Patient Decision Aid (PDA), using a Health Technology Assessment (HTA) process, to assist patients in their choice of therapeutic options, and to promote shared decision making among patients, healthcare professionals, and other interested parties.Methods: A systematic review (SR) was conducted of existing breast cancer patient Decision Aids encountered in the main scientific journal databases and on institutional Web sites that create PDAs, together with a Qualitative Research (QR) study, using semi-structured interviews and focus group with stakeholders (patients, family members, and health professionals), with the aim of developing a PDA for breast cancer.Results: The SR shows that PDAs in breast cancer not only increase patient knowledge of the illness, leading to more realistic expectations of treatment outcomes, but also reduce passivity in the decision-making process and facilitate the appropriate choice of treatment options in accordance with patient medical and personal preferences. The analysis of QR shows that both breast cancer patients and healthcare professionals agree that surgery, adjuvant treatments, and breast reconstruction represent the most important decisions to be made. Worry, anxiety, optimism, and trust in healthcare professionals were determined as factors that most affected patients subjective experiences of the illness. This HTA was used as the basis for developing a PDA software program.Conclusions: The SR and QR used in the development of this PDA for breast cancer allowed patients to access information, gain additional knowledge of their illness, make shared treatment decisions, and gave healthcare professionals a deeper insight into patient experiences of the disease.

Piloting a parent and patient decision aid to support clinical trial decision making in childhood cancer

2019 ◽  
Vol 28 (7) ◽  
pp. 1520-1529 ◽  
Author(s):  
Eden G. Robertson ◽  
Claire E. Wakefield ◽  
Richard J. Cohn ◽  
Robert A. Battisti ◽  
Mark W. Donoghoe ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Decision Making ◽  
Childhood Cancer ◽  
Decision Aid ◽  
Patient Decision Aid ◽  
Patient Decision

Prospective evaluation of a new patient decision aid to enhance prostate cancer screening decision-making.

2019 ◽  
Vol 37 (7_suppl) ◽  
pp. 87-87
Author(s):  
Michael Austin Brooks ◽  
Anita Misra-Hebert ◽  
Alexander Zajichek ◽  
Sigrid V. Carlsson ◽  
Jonas Hugosson ◽  
...  
Keyword(s):  
Prostate Cancer ◽  
Decision Making ◽  
Health Literacy ◽  
Decision Aid ◽  
Decisional Conflict ◽  
Patient Decision Aid ◽  
Psa Screening ◽  
Psa Testing ◽  
Patient Decision ◽  
The Impact

87 Background: We previously developed screening nomograms to predict 15-year risk of all-cause mortality, prostate cancer diagnosis, and prostate cancer mortality, and incorporated them into a graphical patient decision aid (PtDA). Our objective was to prospectively recruit primary care patients interested in shared-decision making regarding prostate specific antigen (PSA) screening and assess the impact of individualized counseling using our new PtDA. Methods: 50 patients from one internal medicine practice were enrolled in a single-arm sequential trial design, with face-to-face clinician counseling and questionnaires. Eligibility criteria included men age 50-69 years old and life expectancy > 10 years. Patients were excluded for a personal history of prostate cancer or PSA screening within the prior year. Participants completed baseline questionnaires regarding prior PSA testing, demographic information, health literacy, and the Control Preferences Scale (CPS). They then received standardized counseling (based on large trial and epidemiologic data) regarding PSA screening, followed by individualized counseling using our new PtDA. Participants then made a screening decision, and completed a post decision questionnaire including a Decisional Conflict Scale. Results: The median age was 60 (IQR 54; 65). 41 (82%) had a prior PSA test, while 9 (18%) had not. 42 (84%) of participants received some education beyond high school, 41 (82%) demonstrated high health literacy, and 45 (90%) desired to have an active role in decision-making based on the CPS. After undergoing counseling, 34 (68%) participants chose to undergo initial or repeat PSA screening, 8 (16%) chose against future screening, and 8 (16%) remained uncertain. 45 (90%) participants found individualized counseling using the PtDA more useful than standardized counseling. Finally, patients reported reduced decisional conflict compared to historical controls (P < 0.001). Conclusions: Our process of standardized counseling followed by individualized counseling using our new PtDA was effective in reducing decisional conflict. The majority of participants found the PtDA more useful for decision making than standardized counseling. Clinical trial information: NCT03387527.

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.

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