Development Of Decision Aid Research Articles

Decisional Needs of Veterans With Mild Traumatic Brain Injury Initiating Treatment for Insomnia Disorder and Obstructive Sleep Apnea.

We sought to elicit key informant (KI) perspectives regarding decisional needs of Veterans with mild traumatic brain injury (mTBI) who are initiating insomnia disorder and obstructive sleep apnea (OSA) treatment within the Veterans Health Administration (VHA) Polytrauma/TBI System of Care (PSC). Specifically, we sought to understand: (1) information regarding treatment options that Veterans with mTBI require in order to make an informed decision; and (2) values used to guide decision-making (ie, personally meaningful aspects of the decision used to compare treatment options). Nationwide VHA PSC sites. Clinicians included VHA providers and policymakers involved in the management of mTBI and/or sleep disorders in the VHA PSC (n =29). Veterans included those with a clinician-confirmed mTBI who received care for insomnia disorder and/or OSA within the past year (n =20). Semi-structured interviews with the 49 KIs were recorded and transcribed verbatim. Themes were identified using a descriptive and interpretive approach to qualitative analysis. Not applicable. Informational needs identified by both KI groups included information regarding outcomes and downsides of treatment, accessible delivery, treatment candidates, description of diagnosis, and level of commitment. Values used to guide decision-making for both insomnia disorder and OSA treatment included benefits, downsides, and availability of treatments. Values used to decide on insomnia treatments alone included time commitment, intrinsic management of sleep, beliefs regarding mental health treatment, and time course of benefit. Values used to decide on OSA treatment alone included intrusiveness of the treatment, appearance, and impact on bed partners. The current study revealed the decisional needs of Veterans with mTBI who are initiating sleep disorder treatment. Findings can inform the development of decision aids and other efforts aimed at promoting patient-centered management of comorbid mTBI and sleep disorders, thereby improving care quality and clinical outcomes.

Development of a Patient Decision Aid for Distal Radius Fractures in Patients Aged ≥65 Years

The ideal management of distal radius fractures (DRFs) in patients aged 65 years and older is debated. Acknowledging the evidence that both nonsurgical and surgical treatment yield similar outcomes one year after injury, a patient decision aid (PDA) could facilitate patient engagement in treatment decision-making. The purpose of this study was to develop a PDA to guide patients in the treatment of DRFs in patients ≥65 years of age. The DRF PDA was developed using an established decision sciences framework. The PDA included an overview of DRFs, treatment options (casting vs surgery), risk/benefits, and a values clarification section. During the development phase, hand surgeons and patients reviewed the PDA; then, semistructured interviews were performed with participants to elicit feedback. Eleven patients and 11 hand surgeons participated in the study. All patients found the PDA useful and almost all stated it would make the treatment decision easier. Most patients believed that there was enough information in the PDA, but one desired more information about surgical risks. Almost all surgeons stated the PDA would be easy for patients to use and understand, and approximately half believed that it would help patients make a more informed decision. Most surgeons expressed that the PDA would complement their usual approach to counseling patients, but some noted it would involve changes to their workflow. Most participants believed the information presented was unbiased, but one patient thought it was biased toward surgery, whereas a few surgeons believed that it was biased toward nonsurgical treatment. All patients expressed that the PDA was informative, comprehensive, and easy to understand and would be helpful if they were deciding about DRF treatment. Surgeons believed that patients would find the PDA easy to use and understand, but some had concerns about incorporating it into their clinic workflow. A decision aid for the treatment of DRFs in patients aged ≥65 years can be used to engage patients in the shared decision-making process.

Improving sustainability of a patient decision aid for systemic treatment of metastatic colorectal cancer: A qualitative study

ObjectiveTo improve sustainability of a patient decision aid for systemic treatment of metastatic colorectal cancer, we evaluated real-world experiences and identified ways to optimize decision aid content and future implementation. MethodsSemi-structured interviews with patients and medical oncologists addressed two main subjects: user experience and decision aid content. Content analysis was applied. Fifteen experts discussed the results and devised improvements based on experience and literature review. ResultsThirteen users were interviewed. They confirmed the relevance of the decision aid for shared decision making. Areas for improvement of content concerned; 1) outdated and missing information, 2) an imbalance in presentation of treatment benefits and harms, and 3) medical oncologists' expressed preference for a more center-specific or patient individualized decision aid, presenting a selection of the guideline recommended treatment options. Key points for improvement of implementation were better alignment within the care pathway, and clear instruction to users. ConclusionWe identified relevant opportunities for improvement of an existing decision aid and developed an updated version and accompanying implementation strategy accordingly. InnovationThis paper outlines an approach for continued decision aid and implementation strategy development which will add to sustainability. Implementation success of the improved decision aid is currently being studied in a multi-center mixed-methods implementation study.

Development of a web-based patient decision aid for myopia laser correction method

BackgroundIn the context of healthcare centered on the patient, Patient Decision Aids (PtDAs) acts as an essential instrument, promoting shared decision-making (SDM). Considering the prevalent occurrence of myopia, the objective of this study is to furnish exhaustive and easily comprehensible information to assist patients in making well-informed decisions about their options for myopia laser correction.MethodThe research team developed a decision guide for myopia patients considering laser correction, aiming to facilitate informed decisions. The study followed the first four stages of the IPDAS process model: “scope/scoping,” “design,” “prototype development,” and “alpha testing.” Ten semi-structured interviews with patients (n = 6) and corneal specialist ophthalmologists (n = 4) were conducted to understand the challenges in selecting a laser correction method. Online meetings with 4 corneal specialists were held to discuss challenging cases. A comparison table of harms and benefits was created. The initial prototype was developed and uploaded on the internet portal. User feedback on software and text aspects was incorporated into the final web software, which was reviewed by a health education expert for user-friendliness and effectiveness.ResultEducational needs assessment revealed concerns such as pain, daily life activities, return to work, the potential need for glasses (‘number return’), eye prescription stability, and possible complications. These shaped the decision aid tool’s content. Expert consensus was achieved in several areas, with some items added or extended. In areas lacking consensus, comments were added for clarity. Five clients assessed the web app (PDAIN), rating it 46/50 in user-centricity, 47/50 in usability, and 45/50 in accuracy and reliability, totaling 138/150. Post-piloting, software errors were documented and rectified. During the trial phase, five myopic users interacted with the software, leading to modifications. User feedback indicated the tool effectively enhanced understanding and influenced decision-making.ConclusionPDAIN, serves as a facilitative tool in the process of selecting a corneal laser correction method for myopic patients. It enabling Nearsighted patients to make informed decisions.

Exploring the burden of actinic keratoses through development of a patient decision aid: a mixed-methods study.

Actinic keratoses (AKs) are present on sun-exposed sites and are considered precursors of cutaneous squamous cell carcinoma. A better understanding of the experiences of patients with this condition may improve patient-provider relationships and guide the introduction of shared decision-making (SDM) to treatment decisions. To develop a patient decision aid (PDA) for field treatment of multiple AKs in line with the International Patient Decision Aid Standards (IPDAS) by (i) characterizing the burden and lived experiences of patients with multiple AKs, (ii) understanding the decisional needs of patients requiring field treatment, and (iii) exploring clinician preferences regarding field treatment for multiple AKs. This mixed-methods study followed the most up-to-date guidelines set out by the IPDAS collaboration; a voluntary body that aims to enhance the quality of PDAs by developing an evidence-based systematic process for the development of unbiased and effective PDAs. Multiple AKs have a psychosocial impact on patients. Patients feel supported through the integration of evidence-based information to guide SDM. We propose that the use of a PDA for multiple AKs provides a key role in supporting informed shared patient-provider decision-making and empowers patient involvement in their prospective treatment strategy.

User-Centered Development of a Patient Decision Aid for Choice of Early Abortion Method: Multi-Cycle Mixed Methods Study.

People seeking abortion in early pregnancy have the choice between medication and procedural options for care. The choice is preference-sensitive-there is no clinically superior option and the choice depends on what matters most to the individual patient. Patient decision aids (PtDAs) are shared decision-making tools that support people in making informed, values-aligned health care choices. We aimed to develop and evaluate the usability of a web-based PtDA for the Canadian context, where abortion care is publicly funded and available without legal restriction. We used a systematic, user-centered design approach guided by principles of integrated knowledge translation. We first developed a prototype using available evidence for abortion seekers' decisional needs and the risks, benefits, and consequences of each option. We then refined the prototype through think-aloud interviews with participants at risk of unintended pregnancy ("patient" participants). Interviews were audio-recorded and documented through field notes. Finally, we conducted a web-based survey of patients and health care professionals involved with abortion care, which included the System Usability Scale. We used content analysis to identify usability issues described in the field notes and open-ended survey questions, and descriptive statistics to summarize participant characteristics and close-ended survey responses. A total of 61 individuals participated in this study. Further, 11 patients participated in think-aloud interviews. Overall, the response to the PtDA was positive; however, the content analysis identified issues related to the design, language, and information about the process and experience of obtaining abortion care. In response, we adapted the PtDA into an interactive website and revised it to include consistent and plain language, additional information (eg, pain experience narratives), and links to additional resources on how to find an abortion health care professional. In total, 25 patients and 25 health care professionals completed the survey. The mean System Usability Scale score met the threshold for good usability among both patient and health care professional participants. Most participants felt that the PtDA was user-friendly (patients: n=25, 100%; health care professionals: n=22, 88%), was not missing information (patients: n=21, 84%; health care professionals: n=18, 72%), and that it was appropriate for patients to complete the PtDA before a consultation (patients: n=23, 92%; health care professionals: n=23, 92%). Open-ended responses focused on improving usability by reducing the length of the PtDA and making the website more mobile-friendly. We systematically designed the PtDA to address an unmet need to support informed, values-aligned decision-making about the method of abortion. The design process responded to a need identified by potential users and addressed unique sensitivities related to reproductive health decision-making.

Development of a patient decision aid for children and adolescents following anterior cruciate ligament rupture: an international mixed-methods study

AimTo develop and user test an evidence-based patient decision aid for children and adolescents who are considering anterior cruciate ligament (ACL) reconstruction.DesignMixed-methods study describing the development of a patient decision...

Qualitative Analysis of Patient Decisional Needs for Medications to Treat Heart Failure.

The development of tools to support shared decision-making should be informed by patients' decisional needs and treatment preferences, which are largely unknown for heart failure (HF) with reduced ejection fraction (HFrEF) pharmacotherapy decisions. We aimed to identify patients' decisional needs when considering HFrEF medication options. This was a qualitative study using semi-structured interviews. We recruited patients with HFrEF from 2 Canadian ambulatory HF clinics and clinicians from Canadian HF guideline panels, HF clinics, and Canadian HF Society membership. We identified themes through inductive thematic analysis. Participants included 15 patients and 12 clinicians. Six themes and associated subthemes emerged related to HFrEF pharmacotherapy decision-making: (1) patient decisional needs included lack of awareness of a choice or options, difficult decision timing and stage, information overload, and inadequate motivation, support and resources; (2) patients' decisional conflict varied substantially, driven by unclear trade-offs; (3) treatment attribute preferences-patients focused on both benefits and downsides of treatment, whereas clinicians centered discussion on benefits; (4) quality of life-patients' definition of quality of life depended on pre-HF activity, though most patients demonstrated adaptability in adjusting their daily activities to manage HF; (5) shared decision-making process-clinicians' described a process more akin to informed consent; (6) decision support-multimedia decision aids, virtual appointments, and primary-care comanagement emerged as potential enablers of shared decision-making. Patients with HFrEF have several decisional needs, which are consistent with those that may respond to decision aids. These findings can inform the development of HFrEF pharmacotherapy decision aids to address these decisional needs and facilitate shared decision-making.

Decoding AI’s Nudge: A Unified Framework to Predict Human Behavior in AI-Assisted Decision Making

With the rapid development of AI-based decision aids, different forms of AI assistance have been increasingly integrated into the human decision making processes. To best support humans in decision making, it is essential to quantitatively understand how diverse forms of AI assistance influence humans' decision making behavior. To this end, much of the current research focuses on the end-to-end prediction of human behavior using ``black-box'' models, often lacking interpretations of the nuanced ways in which AI assistance impacts the human decision making process. Meanwhile, methods that prioritize the interpretability of human behavior predictions are often tailored for one specific form of AI assistance, making adaptations to other forms of assistance difficult. In this paper, we propose a computational framework that can provide an interpretable characterization of the influence of different forms of AI assistance on decision makers in AI-assisted decision making. By conceptualizing AI assistance as the ``nudge'' in human decision making processes, our approach centers around modelling how different forms of AI assistance modify humans' strategy in weighing different information in making their decisions. Evaluations on behavior data collected from real human decision makers show that the proposed framework outperforms various baselines in accurately predicting human behavior in AI-assisted decision making. Based on the proposed framework, we further provide insights into how individuals with different cognitive styles are nudged by AI assistance differently.

Development of The Lupus Clinical Trials Enrollment Decision Aid: a pilot study

IntroductionIn this pilot study, we describe the development of a patient-centered Decision Aid (DA) for participation of SLE clinical trials called “The Lupus Clinical Trials Enrollment DA”.MethodsA draft DA was designed by a development working group using a collaborative, iterative process using the International Patient Decision Aid Standards (IPDAS) guidelines. The approved draft DA was then pilot tested and refined using semi structured interview with 10 lupus providers and 12 SLE patients. Descriptive statistics were calculated. Interviews/surveys were conducted until thematic saturation was achieved. Responses on usefulness were accumulated, and mean usefulness scores were calculated. Feedback from the semi-structured interviews were categorized into several themes as outlined in the results section.ResultsThe definition of treatments, side effects of each option, and expected improvement from each option was outlined. 90% of providers and 91.7% of patients reported that the definition of SOC treatment was clear. Additionally, the expected improvement for SOC (90% of providers, 100% of patients), clinical trial drug (70%, 91.6%), and placebo (70%, 100%) were noted to be clear. Side effects of SOC (80%, 100%), clinical trial drug treatment (80%, 100%), placebo (90%, 100%), were also noted to be clear. 100% of providers and patients thought that the figure outlining pros/cons of participating in clinical trials was appropriate. The mean usefulness scores for the DA were 4.45/5 for providers and 4.67/5 for patients.DiscussionThese data demonstrate that both patients and providers confirm that the newly developed The Lupus Clinical Trials Enrollment DA is useful and easy to use. Qualitative feedback from providers demonstrated concern that aspects of the DA, such as expected improvement and side effects might be unclear to patients; however, patients did not express the same concern in either the quantitative or qualitative feedback.

'It is empowering and gives people dignity in a very difficult process': A multistage, multimethod qualitative study to understand the views of end users in the cultural adaptation of a dementia and driving decision aid.

Decisions about driving for individuals living with dementia (ILWD) can be challenging. There are limited evidence-based person-centred interventions in the United Kingdom that support decisions about transitioning to not driving or guidelines for developing decision aids for ILWD. This study aimed to understand the important features of a decision aid through the cultural adaptation of Australian dementia and driving decision aid (DDDA) for ILWD residing in the United Kingdom. This qualitative study was theoretically underpinned by a person-centred framework and conducted over three stages: (1) Development of a draft UK-specificDDDA; (2) semistructured interviews with ILWDand an online survey with stakeholders to obtain their views on a draft UK DDDA and (3) content analysis and synthesis of qualitative data to inform the final version of the decision aid. Eleven ILWD and six of their spouses participated in interviews, and 102 stakeholders responded to an online survey. The four broad features identified as important to include in a decision aid for drivers living with dementia were: a structured and interactive format; positive and supportive messaging and presentation; relevant and concise contentand choice-centred. The perceived benefits of the decision aid were identified as supporting conversations, enhancing collaborative decision making and enabling agency with decisions about driving and future mobility options. Decision aids that are underpinned by interactive choice-driven questions enhance a person-centred approach to decisions about driving. Positively framing decision aids through the presentation and content can facilitate engagement with the decision-making process about driving. The findings have implications for the development of decision aids designed for ILWD on other important health and social topics. Advocating for the development of a UK DDDA were ILWD. Healthcare professionals contributed to the development of a draft UK DDDA. Former and current drivers living with dementia, family members, healthcare professionals and other support networks of ILWD participated in interviews or an online survey which informed the final version of the UK DDDA.

The Development and Testing of a Patient Decision Aid for Individuals with Homologous Recombinant Proficient Ovarian Cancer Who Are Considering Niraparib Maintenance Therapy.

New treatments for ovarian cancer are available that require trade-offs between progression-free survival and quality of life. The aim of this study was to develop a decision aid for patients with homologous recombinant proficient (HRP) tumors, as the benefit-harm ratio of niraparib needs consideration. This decision aid was created with a systematic and iterative development process based on the Ottawa Decision Support Framework. The decision aid was user-tested for acceptability, usability, and comprehensibility using a survey completed by a sample of patients with ovarian cancer and oncologists. This decision aid follows the International Patient Decision Aids Standards (IPDAS) criteria in its development. User-test respondents (n = 13 patients; 13 physicians) reported that the decision aid used language that was easy to follow (69% patients; 85% physicians), was an appropriate length (69% patients; 62% physicians) and provided the right amount of information (54% patients; 54% physicians). Most respondents (92% patients; 62% physicians) would recommend this decision aid for HRP patients considering niraparib. This is the first decision aid for patients with HRP ovarian cancers who are considering niraparib maintenance therapy. It is available on-line and is being further evaluated in a pragmatic clinical trial in Saskatchewan.

Have a vital end-user been overlooked? Developing a shared decision intervention for patients with potential pancreatic cancer regarding the choice of surgery

ObjectiveTo develop a patient decision aid facilitating shared decision making for patients with potential pancreatic cancer deciding about no treatment, surgical or medical treatment. MethodsBased on a user-centred design by Wittemann et al., we developed a shared decision making intervention in three phases: 1) Understanding decision needs 2) Development of a patient decision aid (PtDA) based on a generic template 3) Assessment of the intervention from interviews with patients (n = 11), relatives (n = 11), nurses (n = 4) and surgeons (n = 2) analysed with thematic analysis, and measuring patients' perceptions of choice of options with the Decisional Conflict Scale. ResultsResults showed varying experiences with the use of the PtDA, with surgeons not finding PtDA useful as it was impractical and constraining with patients' conversations. There was no difference in patients' perceptions in choosing options for those being presented vs those patients not being presented for the PtDA. ConclusionThe format and structure of the PtDA was not feasible for the surgeons as fundamental users in the present clinic. InnovationThis study highlights the urgent need to consider clinical context before introducing a predefined tool and shows the importance of a multistakeholder approach. Research should focus on finding means to successful implement shared decision making.

Exploring the information needs of patients with osteoarthritis of the knee: a content analysis of Facebook group posts

BackgroundEnd-stage osteoarthritis of the knee (OAK) is often treated by total knee arthroplasty (TKA). This intervention can significantly improve quality of life. However, many patients are dissatisfied with the outcome of surgery. One of the factors related to dissatisfaction is the of lack integration of patients’ preferences, habits and values that are not addressed by physicians. To develop realistic expectations, affected patients need evidence-based information. Our aim was to explore the information needs of patients with OAK to support the development of decision aids and consent forms to promote informed decision-making. Additionally, we investigated whether the information needs during the Covid-19 pandemic differ from those before the pandemic.MethodsThe qualitative research design included a social media analysis of Facebook groups. Facebook groups were selected according to the following criteria: Thematic relevance, English or German language, at least one new post per week, from period before and after the start of the Covid-19 pandemic in March 2020. Thematically relevant group posts were analysed according to the content-structuring content analysis of Kuckartz using MaxQDA.ResultsOut of 448 identified Facebook groups, we screened seven for relevant posts and a total of 77 posts out of 6 groups were selected. The following eight categories were derived during the coding process: access to health care, disease information, TKA indication and contraindication, TKA outcome and quality of life, information needs regarding conservative therapy, strain, attitude towards TKA and attitude towards conservative therapy. The analysis showed that patients with OAK need information about the benefits and risks of TKA and conservative therapies.ConclusionThis study provides information on the information needs of patients with OAK in order to decide between TKA or conservative therapy. Patients need information about treatment options in due consideration of their immediate living situation to be reliably able to assess potential outcomes. Such Information about TKA should enable patients to assess the individual prognosis with comprehensible and relevant outcome measures. Also, they should be formulated with the living environment of the patients in mind and be linked to possible fears and negative previous experiences with treatments.

Lessons Learned From Shared Decision-Making With Oral Anticoagulants: Viewpoint on Suggestions for the Development of Oral Chemotherapy Decision Aids.

Oral chemotherapy is commonly prescribed, and by using decision aids (DAs), clinicians can facilitate shared decision-making (SDM) to align treatment choices with patient goals and values. Although products exist commercially, little evidence informs the development of DAs targeting the unique challenges of oral chemotherapy. To address this gap in the literature, our objective was to review DAs developed for oral anticoagulation, DA use in oncology, and patient preference surveys to guide the development of DAs for oral chemotherapy. We focused on reviewing SDM, patient preferences, and specifically the development, efficacy, and patient experience of DAs in oral anticoagulation and oncologic conditions, ultimately including conclusions and data from 30 peer-reviewed publications in our viewpoint paper. We found that effective DAs in oral anticoagulation improved knowledge, lowered decisional conflict, increased adherence, and covered a broad range of SDM elements; however, limited information on patient experience was a common shortcoming. In oncology, DAs increased knowledge and aligned decisions with the values of the patients. Ineffective oncology DAs provided general, unclear, or overly optimistic information, while providing "too much" information was not shown to do harm. Patients preferred DAs that included pros and cons, side effects, questions to ask, and expected quality of life changes. In developing DAs for oral chemotherapy, patients should be included in the development process, and DA content should be specifically tailored to patient preferences. Providing DAs ahead of appointments proved more effective than during, and additional considerations included addressing barriers to efficacy. There is a need for evidence-based DAs to facilitate SDM for patients considering oral chemotherapy. Developers should use data from studies in oral anticoagulation, oncology, and preference surveys to optimize SDM.

Preferences and decisional considerations relating to opioid agonist therapy among Ukrainian people who use drugs: A conjoint analysis survey.

Scaling up opioid agonist therapies (OAT) is the most effective strategy to control combined HIV and opioid epidemics, especially in Eastern Europe and Central Asia (EECA), where HIV incidence and mortality continue to increase. Patient concerns about OAT, however, have undermined scale-up. The objective of this study is to understand Ukrainian opioid use disorder patient preferences about OAT to guide the development of an evidence-informed decision aid for clinical decision-making. We conducted a conjoint-based choice (CBC) survey. Participants were asked to about their preferences relating to 7 attributes of OAT (cost, dosing frequency, concerns about withdrawal symptoms, adverse side effects, improvements in quality of life, precipitation of withdrawal and legislative requirements to be registered as a drug dependent person) and 20 attribute levels for receiving OAT under differing potential treatment constraints. Data were analyzed using Hierarchical Bayesian models. Using respondent-driven sampling and random sampling, we recruited 2,028 people who inject drugs with opioid use disorder. Relative importance (RIS) and partial-worth utility scores (PWUS) were used to assess preferences for attributes and thresholds within each attribute. Cost and dosing frequency were the most important attributes (RIS = 39.2% and RIS = 25.2%, respectively) to potential patients, followed by concerns about withdrawal symptoms (RIS = 10.8%), adverse side effects (RIS = 9.0%), quality-of-life improvement (RIS = 7.5%), precipitation of euphoria (5.2%) and requirement to be registered as a drug- dependent person (RIS = 3.1%). The monthly cost-threshold for willingness-to-pay was 1,900 UAH ($70 USD). In Ukraine, where both governmental and private OAT clinics have emerged and provide markedly different delivery strategies, preferences are mostly driven by out-of-pocket expenses, despite many patients being willing to pay for OAT. Programmatic demands (flexibility and ease of acquiring medications) remain an important consideration while for a minority, clinical concerns about withdrawal symptoms, adverse side effects and OAT impact on life play a smaller role.

Why to test for dementia: perspectives of patients, significant others and general practitioners.

This study aims to provide greater insight into the current decision-making process on diagnostic testing for dementia by exploring the expectations, needs and experiences of patients with memory complaints, significant others and general practitioners (GPs). We performed semi-structured interviews with patients (>60years) who consulted their GP on memory complaints, significant others and GPs. Participants were recruited until data saturation was reached in thematic analysis of interview transcripts. We performed 51 interviews (patients n = 20, significant others n = 15, GPs n = 16). Thematic analysis revealed four themes: (i) 'drivers to (not) testing', i.e. need to act on symptoms, beliefs on the necessity and expected outcomes of diagnostic testing; (ii) 'patient preferences and context are critical in the actual decision', i.e. in the actual decision-making process interpretation of symptoms, GPs' desire to meet patient preferences, social context and healthcare system dynamics guided the decision; (iii) 'need for individualised communication in the decision-making process', i.e. for patients feeling heard was a prerequisite for decision-making and GPs tailored communication strategies to individual patients and (iv) 'GP practice and barriers to shared decision-making (SDM)', i.e. although GPs value SDM in the decision on diagnostic testing for dementia, patients express limited awareness of the decision and options at stake. Decision-making on diagnostic testing for dementia is a multifactorial and preference-guided process for all involved stakeholders, but decisions are often not explicitly jointly made. Development of patient decision aids could facilitate better involvement and more informed choices by patients.

The development of a web-based patient decision aid for type 2 diabetes to support patients and their healthcare professionals in the treatment decision-making process.

Introduction: Patient decision aids (PDAs) are useful tools in facilitating shared decision-making (SDM) between patients and healthcare professionals. The International Patient Decision Aids Standards (IPDAS) Collaboration developed a model for the systematic development of PDAs. However, there is still some uncertainty about which approach is most suitable for each step of the development process and questions remain on how to best involve patients and healthcare professionals in the development process. We aim to provide insights into how the IPDAS model for the development of a PDA for type 2 diabetes could be used.
 Target audience: Our developed PDA is for individuals with type 2 diabetes, who need to decide on a new or additional glucose-lowering treatment (lifestyle and/or medical treatment), and their healthcare professionals in primary care.
 Methods: The PDA was systematically developed in the Netherlands, following five steps: 1) define scope; 2) establishment of expert group; 3) design of PDA (determine, among others, the preferences of patients and healthcare professionals); 4) draft prototype; and 5) iterative process of review and redraft. The preferences of patients and healthcare professionals, in combination with input from the expert group and the available evidence of the treatment options for type 2 diabetes, were used to determine the content of the PDA and develop a prototype. Content was written by a scientific writer. The prototype of the PDA was reviewed by the research team and expert group.
 Patient and public involvement: A multidisciplinary expert group was established at the beginning of the study. The expert group consisted of patients with type 2 diabetes (N=2), a representative from the Dutch Diabetes Association, a representative from the Netherlands Diabetes Federation and healthcare professionals representing the broad range of disciplines involved in type 2 diabetes care (i.e., general practitioner, diabetes nurse, practice nurse, pharmacist, endocrinologist and dietician). The expert group met twice a year (online) and advised on the development process and content of the PDA. The expert group meetings were interactive and small-group discussions were held using statements about different aspects of the PDA, such as the format of the PDA.
 Results: Individuals with type 2 diabetes wanted to compare multiple treatment options for both their clinical aspects and their impact on daily life. Following the systematic development process, a web-based PDA was developed consisting of five sections: 1) information about type 2 diabetes and the different treatment options; 2) comparison of treatment options based on, for example, clinical outcomes, effect on weight and risk of cardiovascular diseases; 3) questions to test patients’ knowledge; 4) value-clarification exercise; and 5) summary of the patient's answers and notes. 
 Conclusions: We provided insights into how you could use the IPDAS systematic development process for the development of a PDA. Involving patients and healthcare professionals throughout the development process is valuable for the development of the PDA for type 2 diabetes. They were involved in an early and iterative way, which ensured that the PDA is compatible with the needs and preferences of all relevant stakeholders in Dutch diabetes care.

Perceptions and Attitudes Toward Genetic Counselors and Genetic Testing Among Certified Professional Midwives in Vermont: A Modified Grounded Theory Study.

Increasingly, pregnant people in the United States are choosing to give at birth at home, and certified professional midwives (CPMs) often attend these births. Care by midwives, including home birth midwives, has the potential to decrease unnecessary medical interventions and their associated health care costs, as well as to improve maternal satisfaction with care. However, lack of integration into the health care system affects the ability of CPMs to access standard medications and testing for their clients, including prenatal screening. Genetics and genomics are now a routine part of prenatal screening, and genetic testing can contribute to identifying candidates for planned home birth. However, research on genetics and midwifery care has not, to date, included the subset of midwives who attend the majority of planned home births, CPMs. The purpose of this study was to examine CPMs' access to, and perspectives on, one aspect of prenatal care, genetic counselors and genetic counseling services. Using semi-structured interviews and a modified grounded theory approach to narrative analysis, we identified three key themes: (1) systems-level issues with accessing information about genetic counseling and genetic testing; (2) practice-level patterns in information delivery and self-awareness about knowledge limitations; and (3) client-level concerns about the value of genetic testing relative to difficulties with access and stress caused by the information. The results of this study can be used to develop decision aids that include information about genetic testing and genetic counseling access for pregnant people intending home births in the United States.

Patient perceptions of altering chemotherapy treatment due to peripheral neuropathy.

Clinical practice guidelines recommend altering neurotoxic chemotherapy treatment in patients experiencing intolerable chemotherapy-induced peripheral neuropathy (CIPN). The primary objective of this survey was to understand patient's perspectives on altering neurotoxic chemotherapy treatment, including their perceptions of the benefits of preventing irreversible CIPN and the risks of reducing treatment efficacy. A cross-sectional online survey was distributed via social networks to patients who were currently receiving or had previously received neurotoxic chemotherapy for cancer. Survey results were analyzed using descriptive statistics and qualitative analysis. Following data cleaning, 447 participants were included in the analysis. The median age was 57 years, 93% were white, and most were from the UK (53%) or USA (38%). Most participants who were currently or recently treated expected some CIPN symptom resolution (86%), but 45% of those who had completed treatment more than a year ago reported experiencing no symptom resolution. Participants reported that they would discontinue chemotherapy treatment for less severe CIPN if they knew their symptoms would be permanent than if symptoms would disappear after treatment. Most patients stated that the decision to alter chemotherapy or not was usually made collaboratively between the patient and their treating clinician (61%). The most common reason participants were reluctant to talk with their clinician about CIPN was fear that treatment would be altered. Participants noted a need for improved understanding of CIPN symptoms and their permanence, better patient education relating to CIPN prior to and after treatment, and greater clinician understanding and empathy around CIPN. This survey highlights the importance of shared decision-making, including a consideration of both the long-term benefits and risks of altering neurotoxic chemotherapy treatment due to CIPN. Additional work is needed to develop decision aids and other communication tools that can be used to improve shared decision making and help patients with cancer achieve their treatment goals.