Dataset Information

Adapting the Breast Cancer Surgery Decision Quality Instrument for Lower Socioeconomic Status: Improving Readability, Acceptability, and Relevance.

ABSTRACT: Introduction. Breast cancer is the second most common malignancy in women. The Decision Quality Instrument (DQI) measures the extent to which patients are informed and involved in breast surgery decisions and receive treatment that aligns with their preferences. There are limited data on the performance of the DQI in women of lower socioeconomic status (SES). Our aims were to 1) examine (and if necessary adapt) the readability, usability, and acceptability of the DQI and 2) explore whether it captures factors important to breast cancer surgery decisions among women of lower SES (relevance). Methods. We conducted semistructured cognitive interviews with women of lower SES (based on insurance status, income, and education) who had completed early-stage breast cancer treatments at three cancer centers. We used a two-step thematic analysis with dual independent coding. The study team (including Patient Partners and a Community Advisory Board) reviewed and refined suggested changes. The revised DQI was presented in two focus groups of breast cancer survivors. Results. We conducted 39 interviews. Participants found most parts of the DQI to be helpful and easy to understand. We made the following suggested changes: 1) added a glossary of key terms, 2) added two answer choices and an open text question in the goals and concerns subscale, 3) reworded the treatment intention question, and 4) revised the knowledge subscale instructions since several women disliked the wording and were unsure of what was expected. Discussion. The readability, usability, acceptability, and relevance of a measure that was primarily developed and validated in women of higher SES required adaptation for optimal use by women of lower SES. Further research will test these adaptations in lower SES populations.

SUBMITTER: Durand MA

PROVIDER: S-EPMC6262751 | biostudies-literature | 2018 Jul-Dec

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Adapting the Breast Cancer Surgery Decision Quality Instrument for Lower Socioeconomic Status: Improving Readability, Acceptability, and Relevance.

Durand Marie-Anne MA Song Julia J Yen Renata West RW Sepucha Karen K Politi Mary C MC Dhage Shubhada S Rosenkranz Kari K Margenthaler Julie J Tosteson Anna N A ANA Crayton Eloise E Jackson Sherrill S Bradley Ann A O'Malley A James AJ Volk Robert J RJ Ozanne Elissa E Percac-Lima Sanja S Acosta Jocelyn J Mir Nageen N Scalia Peter P Ward Abigail A Elwyn Glyn G

MDM policy & practice 20180701 2

<b>Introduction.</b> Breast cancer is the second most common malignancy in women. The Decision Quality Instrument (DQI) measures the extent to which patients are informed and involved in breast surgery decisions and receive treatment that aligns with their preferences. There are limited data on the performance of the DQI in women of lower socioeconomic status (SES). Our aims were to 1) examine (and if necessary adapt) the readability, usability, and acceptability of the DQI and 2) explore whethe ...[more]

PMID: 30515461

Similar Datasets

Project description:ObjectiveEpilepsy surgery is an effective albeit underused treatment for refractory epilepsy, and online materials are vital to patient understanding of the complex process. Our goal is to analyze the readability and content inclusion of online patient health education materials designed for epilepsy surgery.MethodsA private browser setting was used on Google and Bing to identify the top 100 search results for the terms "epilepsy+surgery". Scientific papers, insurance pages, pay-wall access sites, and non-text content were excluded. The website text was reformatted to exclude graphics, contact information, links, and headers. Readability metrics were calculated using an online tool. Text content was analyzed for inclusion of important concepts (pre-surgical evaluation, complications, risks of continued seizures, types of surgery, complimentary diagrams/audiovisual material). Comparison of readability and content inclusion was performed as a function of organization types (epilepsy center, community health organization, pediatric-specific) and location (region, country).ResultsBrowser search yielded 82 distinct websites with information regarding epilepsy surgery, with 98.7% of websites exceeding the recommended 6th-grade reading level for health information. Epilepsy centers had significantly worse readability (Flesch-Kincaid Grade Level (FKGL) P < 0.01 and Flesch Reading Ease (FRE) P < 0.05). Content analysis showed that only 37% of websites discuss surgical side effects and only 23% mention the risks of continued seizures. Epilepsy centers were less likely to report information on surgical side effects (P < 0.001). UK-based websites had better readability (FKGL P < 0.01 and FRE P < 0.01) and were more likely to discuss side effects (P = 0.01) compared to US-based websites.SignificanceThe majority of online health content is overly complex and relatively incomplete in multiple key areas important to health literacy and understanding of surgical candidacy. Our findings suggest academic organizations, including level 4 epilepsy centers, need to simplify and broaden online education resources. More comprehensive, publicly accessible, and readable information may lead to better-shared decision-making.

Project description:Introduction: The Quality of Decision-Making Orientation Scheme (QoDoS) was developed to provide organisations involved in submission, approval and reimbursement of new medicines with a tool to improve the quality of their decision-making processes and is considered the most promising tool for such purpose. This study aimed to further establish the measurement properties of the QoDoS by evaluating its reliability (internal consistency and test-retest reliability) and relevance in the target population. Methods: The study participants consisted of 55 individuals recruited from pharmaceutical companies, regulatory and HTA agencies. It was designed as a longitudinal study with participants assessed on two different occasions, at baseline (test 1) and then 7 days later (test 2). Internal consistency reliability was assessed with Cronbach's alpha and the test-retest reliability was evaluated using the intraclass correlation coefficients (ICC) based on absolute agreement, 2 way mixed-effects model for the four QoDoS domains. The relevance of the QoDoS was evaluated by applying cognitive debriefing using five short feedback questions following test 1. Results: Test 1 was completed by 44 study participants (80% response rate) and test 2 was completed by 32 of the 44 individuals, resulting in a 73% response rate. Cronbach's alpha coefficient was greater than 0.7 across all the domains for test 1 and test 2, ranging from 0.71 to 0.79, indicating good consistency of responses. For the overall score across all 47 items, the Cronbach's alpha coefficient was 0.81 for test 1 and 0.86 for test 2, which is rated as very good. The four QoDoS domains showed moderate to strong reproducibility (ICC range: 0.63-0.86). The outcome of the cognitive debriefing from the 43 respondents (98% response rate) confirmed the relevance (95% agreement), language clarity (95%) and completeness of items (86%); the clarity of the scaling (91%) as well as spontaneity of responses (95%). Conclusion: These results provide strong support for the relevance and reliability of the QoDoS, which are key properties for future longitudinal and cross-sectional applications of the instrument when evaluating quality of decision making by those involved in the lifecycle of medicines.

Project description:BackgroundAlthough eMental health interventions, especially when delivered in a blended way, have great potential to improve the quality and efficiency of mental health care, their use in practice lags behind expectations. The Fit for Blended Care (FfBC) instrument was developed to support therapists and clients in shaping blended care in a way that optimally fits their needs. However, this existing version cannot be directly applied to specific branches of mental health care as it is too broad and generic.ObjectiveThe goal of this study is to adapt the existing FfBC instrument to fit a specific, complex setting-forensic mental health care-by means of participatory development with therapists.MethodsThe participatory process was divided into 4 phases and was executed by a project team consisting of 1 manager, 3-5 therapists, and 1 researcher. In phase 1, general requirements for the adaptation of the existing instrument were discussed in 2 focus groups with the project team. In phase 2, patient-related factors that influence the use of an existing web-based intervention were elicited through semistructured interviews with all 18 therapists working at an outpatient clinic. In phase 3, multiple focus groups with the project teams were held to create the first version of the adapted FfBC instrument. In phase 4, a digital prototype of the instrument was used with 8 patients, and the experiences of the 4 therapists were discussed in a focus group.ResultsIn phase 1, it became clear that the therapists' main requirement was to develop a much shorter instrument with a few items, in which the content was specifically tailored to the characteristics of forensic psychiatric outpatients. The interviews showed a broad range of patient-related factors, of which 5 were used in the instrument: motivation for blended treatment; writing about thoughts, feelings, and behavior; conscientiousness; psychosocial problems; and social support. In addition, a part of the instrument was focused on the practical necessary preconditions that patients should fill by themselves before the treatment was developed. The use of the web-based prototype of the instrument in treatment resulted in overall positive experiences with the content; however, therapists indicated that the items should be formulated in a more patient-centered way to encourage their involvement in discussing the factors.ConclusionsThe participatory, iterative process of this study resulted in an adapted version of the FfBC instrument that fits the specific forensic context and supports shared decision making. In general, the adaptiveness of the instrument is important: its content and implementation should fit the type of care, the organization, and eHealth intervention. To adapt the instrument to other contexts, the guidelines described in this paper can be followed.

Project description:BackgroundShared decision-making improves the quality of patient care. Unfortunately, shared decision-making is not yet common practice among vascular surgeons. Thus, decision support tools were developed to assist vascular surgeons and their patients in using shared decision-making. This trial aims to evaluate the effectiveness and implementation of decision support tools to improve shared decision-making during vascular surgical consultations in which a treatment decision is to be made.MethodsThe study design is a multicentre stepped-wedge cluster-randomised trial. Eligible patients are adult patients, visiting the outpatient clinic of a participating medical centre for whom several treatment options are feasible and who face a primary treatment decision for their abdominal aortic aneurysm, carotid artery disease, intermittent claudication, or varicose veins. Patients and vascular surgeons in the intervention group receive decision support tools that may help them adopt shared decision-making when making the final treatment decision. These decision support tools are decision aids, consultation cards, decision cards, and a practical training. Decision aids are informative websites that help patients become more aware of the pros and cons of the treatment options and their preferences regarding the treatment choice. Consultation cards with text or decision cards with images are used by vascular surgeons during consultation to determine which aspect of a treatment is most important to their patient. In the training vascular surgeons can practice shared decision-making with a patient actor, guided by a medical psychologist. This trial aims to include 502 vascular surgical patients to achieve a clinically relevant improvement in shared decision-making of 10 out of 100 points, using the 5-item OPTION instrument to score the audio-recordings of consultations.DiscussionIn the OVIDIUS trial the available decision support tools for vascular surgical patients are implemented in clinical practice. We will evaluate whether these tools actually improve shared decision-making in the consultation room. The stepped-wedge cluster-randomised study design will ensure that at the end of the study all participating centres have implemented at least some of the decision support tools and thereby a certain level of shared decision-making.Trial registrationNetherlands Trial Registry, NTR6487 . Registered 7 June 2017. URL: http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=6487.

Project description:BACKGROUND:Breast cancer is the most commonly diagnosed malignancy in women. Mastectomy and breast-conserving surgery (BCS) have equivalent survival for early stage breast cancer. However, each surgery has different benefits and harms that women may value differently. Women of lower socioeconomic status (SES) diagnosed with early stage breast cancer are more likely to experience poorer doctor-patient communication, lower satisfaction with surgery and decision-making, and higher decision regret compared to women of higher SES. They often play a more passive role in decision-making and are less likely to undergo BCS. Our aim is to understand how best to support women of lower SES in making decisions about early stage breast cancer treatments and to reduce disparities in decision quality across socioeconomic strata. METHODS:We will conduct a three-arm, multi-site randomized controlled superiority trial with stratification by SES and clinician-level randomization. At four large cancer centers in the United States, 1100 patients (half higher SES and half lower SES) will be randomized to: (1) Option Grid, (2) Picture Option Grid, or (3) usual care. Interviews, field-notes, and observations will be used to explore strategies that promote the interventions' sustained use and dissemination. Community-Based Participatory Research will be used throughout. We will include women aged at least 18 years of age with a confirmed diagnosis of early stage breast cancer (I to IIIA) from both higher and lower SES, provided they speak English, Spanish, or Mandarin Chinese. Our primary outcome measure is the 16-item validated Decision Quality Instrument. We will use a regression framework, mediation analyses, and multiple informants analysis. Heterogeneity of treatment effects analyses for SES, age, ethnicity, race, literacy, language, and study site will be performed. DISCUSSION:Currently, women of lower SES are more likely to make treatment decisions based on incomplete or uninformed preferences, potentially leading to poorer decision quality, quality of life, and decision regret. This study hopes to identify solutions that effectively improve patient-centered care across socioeconomic strata and reduce disparities in decision and care quality. TRIAL REGISTRATION:NCT03136367 at ClinicalTrials.gov Protocol version: Manuscript based on study protocol version 2.2, 7 November 2017.

Dataset Information

Adapting the Breast Cancer Surgery Decision Quality Instrument for Lower Socioeconomic Status: Improving Readability, Acceptability, and Relevance.

Publications

Adapting the Breast Cancer Surgery Decision Quality Instrument for Lower Socioeconomic Status: Improving Readability, Acceptability, and Relevance.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets