Patient Focus Groups Research Articles

Cancer as a Chronic Illness in Colombia: A Normative Consensus Approach to Improving Healthcare Services for those Living with and beyond Cancer and Its Treatment.

Cancer survivorship care in Colombia is of increasing importance. International survivorship initiatives and studies show that continuing symptoms, psychological distress, and late effects impact the quality of life for survivors. Priorities for quality survivorship according to Colombian patients and clinicians are unknown. We undertook a nominal consensus approach with 24 participants using virtual meeting technology to identify the priorities for cancer survivorship. We applied an iterative approach conducted over eight weeks with five workshops and one patient focus group followed by a priority setting survey. The consensus group established six main themes, which were subsequently evaluated by experts: (i) symptoms and secondary effects of cancer; (ii) care coordination to increase patient access and integration of cancer care; (iii) psychosocial support after cancer treatment; (iv) mapping information resources and available support services for long-term cancer care; (v) identifying socioeconomic and regional inequalities in cancer survival to improve care and outcomes; and (vi) health promotion and encouraging lifestyle change. The order of priorities differed between clinicians and patients: patients mentioned psychosocial support as the number one priority, and clinicians prioritized symptoms and surveillance for cancer recurrence. Developing survivorship care needs consideration of both views, including barriers such as access to services and socioeconomic disparities.

The Nightmare Quality of Life Questionnaire

ABSTRACT Rationale Patient-centered outcomes are increasingly sought to evaluate social interactions and healthcare interventions in patients with sleep disorders. Yet, measures to assess quality of life (QoL) are lacking for those who experience nightmares. Objective The aim of the study is to describe the development and validation of a new health-related quality of life (HRQoL) instrument for patients with nightmares. Methods Attributes obtained from a focus group of patients (n = 113) with established nightmares were analyzed using exploratory factor analysis to elicit salient QoL themes for the new instrument. A validation cohort (n = 34) was used to determine the psychometric performance of the 16-item questionnaire including item-scaling, concurrent validity, and test-retest reliability tested four weeks apart. Results Four factors (sleep health, emotional and psychological well-being, social interaction, and motivation) explained 53.9% of the total variance. The Nightmare Quality of Life (NQoL) showed good internal consistency (Cronbach’s alpha 0.85) and test-retest reliability (ICC = 0.89). Concurrent validity was evidenced by a strong correlation with the Nightmare Distress Questionnaire (r = 0.87; p < .001) and more modest associations with the Nightmare Frequency Questionnaire (r = , 0.69; p < .001), SF-36 (r = −0.68; p < .001), and PSQI (r = 0.45; p = .007). Conclusions The NQoL has demonstrable construct validity and reliability and represents a promising multi-dimensional instrument to assess outcome measures for quality of life in patients with nightmares.

Protocol for the development of a core outcome set for evaluating mixed-diagnosis falls prevention interventions for people with Multiple Sclerosis, Parkinson’s Disease and stroke

Background: Given the high incidence of falls and their associated negative effects, the development of effective falls prevention interventions for people with Multiple Sclerosis (MS), Parkinson's Disease (PD) and stroke is a priority. Currently the implementation of condition-specific falls prevention interventions is challenging in the community due to lack of participants and resources. Given the similarities in falls risk factors across stroke, PD and MS, the design of mixed-diagnosis interventions for groups comprising of people with these three neurological conditions may solve these implementation challenges. Having a core outcome set (COS) for evaluating these interventions would enable the comparison and combination of data, thereby facilitating progress in this research area. Therefore, the aim of this research study is to develop a COS for evaluating mixed-diagnosis falls prevention interventions for people with MS, PD and stroke. Methods: This will be a mixed-methods, international, multi-perspective Delphi consensus study with five stages. Stage one will involve the identification of potential outcomes through a systematic literature search, patient focus groups, and consultation with our Public and Patient Involvement (PPI) panel. The second stage will be the development of the Delphi survey using the outcomes elicited from stage one. Stage three will be the prioritisation of outcomes using a two-round online Delphi survey involving patients, clinicians, researchers and policy-makers/service-planners. The fourth stage will be to identify and recommend outcome measures and definitions. The final stage will be a consensus meeting with representatives from each stakeholder group to agree upon the final COS. Discussion: Adoption of this COS in future trials investigating the effectiveness of mixed-diagnosis falls prevention interventions for people with MS, PD and stroke will facilitate the comparison and combination of research findings. This should translate into improved decision-making by service-planners/policy-makers and clinicians regarding the implementation of evidence-based falls prevention interventions into practice.

O40 A MODIFIED DELPHI PROCESS TO ESTABLISH RESEARCH PRIORITIES IN HERNIA SURGERY

Abstract Aim Abdominal wall hernia repair is one of the most commonly performed surgical procedures worldwide, yet there remains a lack of high quality evidence to support best management. The aim of the study was to use a modified Delphi process to determine future research priorities in this field. Material and Methods Stakeholders were invited by email, using British Hernia Society membership details or Twitter, to submit individual research questions via an online survey. In addition, questions obtained from a patient focus group (PFG) were collated to form Phase I. Two rounds of prioritisation by stakeholders (phase II and III) were then completed to determine a final list of questions. All questions were analysed on an anonymised basis. Results A total of 266 questions, 19 from the PFG, were submitted by 113 stakeholders in Phase I. Of these, 64 questions were taken forward for prioritisation in Phase II, which was completed by 107 stakeholders. Following Phase II analysis, 97 stakeholders prioritised 36 questions in Phase III. This resulted in a final list of 14 research questions, 3 of which were from the PFG. Stakeholders included patients and healthcare professionals (consultant surgeons, trainee surgeons and other multidisciplinary members) from over 27 countries during the 3 phases. Conclusions Fourteen key research priorities pertaining to abdominal wall hernia surgery were identified. Many topics focused on pain, mesh and what the optimal outcome measures following hernia surgery should be. Uniquely, these priorities have been determined from participation by both healthcare professionals and patients. These priorities should now be addressed by well-designed, high-quality international collaborative research.

Digital personal assistants are smart ways for assistive technology to aid the health and wellbeing of patients and carers

BackgroundDigital health solutions such as assistive technologies create significant opportunities to optimise the effectiveness of both health and social care delivery. Assistive technologies include ‘low-tech’ items, such as memory aids and digital calendars or ‘high-tech’ items, like health tracking devices and wearables. Depending on the type of assistive devices, they can be used to improve quality of life, effect lifestyle improvements and increase levels of independence. Acceptance of technology among patients and carers depends on various factors such as perceived skills and competencies in using the device, expectations, trust and reliability. This service evaluation explored the impact of a pilot service redesign focused on improving health and wellbeing by the use of a voice-activated device ‘smart speaker’, Alexa Echo Show 8.MethodsA service evaluation/market research was conducted for a pilot service redesign programme. Data were collected via a survey in person or telephone and from two focus groups of patients (n = 44) and informal carers (n = 7). The age of the study participants ranged from 50 to 90 years. Also, the participants belonged to two types of cohort: one specifically focused on diabetes and the other on a range of long-term health conditions such as multiple sclerosis, dementia, depression and others.ResultsThe device had a positive impact on the health and social well-being of the users; many direct and indirect benefits were identified. Both patients and carers had positive attitudes towards using the device. Self-reported benefits included: reminders for medications and appointments improved adherence and disease control; increased independence and productivity; and for those living alone, the device helped combat their loneliness and low mood.ConclusionThe findings from the study help to realise the potential of assistive technology for empowering supporting health/social care. Especially, the season of COVID-19 pandemic has highlighted the need for remote management of health, the use of assistive technology could have a pivotal role to play with the sustainability of health/social care provision by promoting shared care between the care provider and service user. Further evaluation can explore the key drivers and barriers for implementing assistive technologies, especially in people who are ageing and with long-term health conditions.

Developing, Implementing, and Validating a Social Toxicity Assessment Tool of Cancer.

PURPOSEThe social impact of cancer on patients and their family is well known. Yet, unlike with physical and financial toxicities, no validated tools are available to measure this impact. This study aimed at developing, validating, and implementing a novel social toxicity assessment tool for patients with cancer diagnosis (STAT-C).METHODSQuestions were generated through multiple steps including focus groups of patients, their families, and oncology care professionals. These steps along with relevant literature resulted in the development of an initial 20-item questionnaire. Content validity and relevance of the tool were assessed using Content Validity Index for individual items and Content Validity Index for the entire scale. Following expert examination, the constructed STAT-C tool consisted of 14 items grouped into three domains—social relations, social activities, and economic impact. Based on the total possible score for the survey in 150 patients for all the items, three levels of a socioeconomic toxicity were determined—severe social toxicity, mild social toxicity, and no social toxicity.RESULTSThe 14 items were marked as relevant, and the Content Validity Index for individual items ranged between 0.80 and 1.00. An overall average Content Validity Index for the entire scale of 0.87 showed high content validity of the constructed tool. Exploratory factor analysis revealed retention of 13 items of the constructed STAT-C Tool, which loaded across three factors that mapped groupings into measures of social relations, social activities, and economic impact domains.CONCLUSIONOur study revealed that STAT-C is a valid, reliable tool, and well captures and measures unique and pertinent social toxicity constructs for Arabic-speaking patients. The tool should enable oncology professionals to deliver better patient-centered care as a component of a comprehensive approach.

A modified Delphi process to establish research priorities in hernia surgery

BackgroundAbdominal wall hernia repair is one of the most commonly performed surgical procedures worldwide, yet despite this, there remains a lack of high-quality evidence to support best management. The aim of the study was to use a modified Delphi process to determine future research priorities in this field.MethodsStakeholders were invited by email, using British Hernia Society membership details or Twitter, to submit individual research questions via an online survey. In addition, questions obtained from a patient focus group (PFG) were collated to form Phase I. Two rounds of prioritization by stakeholders (phases II and III) were then completed to determine a final list of research questions. All questions were analyzed on an anonymized basis.ResultsA total of 266 questions, 19 from the PFG, were submitted by 113 stakeholders in Phase I. Of these, 64 questions were taken forward for prioritization in Phase II, which was completed by 107 stakeholders. Following Phase II analysis, 97 stakeholders prioritized 36 questions in Phase III. This resulted in a final list of 14 research questions, 3 of which were from the PFG. Stakeholders included patients and healthcare professionals (consultant surgeons, trainee surgeons and other multidisciplinary members) from over 27 countries during the 3 phases.ConclusionThe study has identified 14 key research priorities pertaining to abdominal wall hernia surgery. Uniquely, these priorities have been determined from participation by both healthcare professionals and patients. These priorities should now be addressed by well-designed, high-quality international collaborative research.

Patient engagement in system redesign teams: a process of social identity

PurposeStudies demonstrate how patient roles in system redesign teams reflect a continuum of involvement and influence. This research shows the process by which patients move through this continuum and effectively engage within redesign projects.Design/methodology/approachThe authors studied members of redesign teams, consisting of 5–10 members: clinicians, systems engineers, health system staff and patient(s), from three health systems working on separate projects in a patient safety learning lab. Weekly team meetings were observed, January 2016–April 2018, 17 semi-structured interviews were conducted and findings through a patient focus group were refined. Grounded theory was used to analyze field notes and transcripts.FindingsResults show how the social identity process enables patients to move through stages in a patient engagement continuum (informant, partner and active change agent). Initially, patient and team member perceptions of the patient's role influence their respective behaviors (activating, directing, framing and sharing). Subsequently, patient and team member behaviors influence patient contributions on the team, which can redefine patient and team member perceptions of the patient's role.Originality/valueAs health systems grow increasingly complex and become more interested in responding to patient expectations, understanding how to effectively engage patients on redesign teams gains importance. This research investigates how and why patient engagement on redesign teams changes over time and what makes different types of patient roles valuable for team objectives. Findings have implications for how redesign teams can better prepare, anticipate and support the changing role of engaged patients.

Quantifying Neck Fibrosis and Its Functional Implications: Development of the Neck Fibrosis Scale.

Despite increasing recognition of the importance of functional outcomes for patients with head and neck cancer, post-treatment neck fibrosis remains poorly understood. We sought to develop and validate a patient reported outcome measure for head and neck cancer patients with neck fibrosis. Prospective multiphase cross-sectional study. To guide instrument development, we employed the World Health Organization International Classification of Functioning, Disability and Health as our conceptual framework. Items were generated using a composite strategy consisting of patient focus groups, literature review, and expert opinion from a multidisciplinary group. Candidate items were reduced through the item impact method. Preliminary psychometric properties of the finalized instrument were evaluated through measures of internal consistency, test-retest reliability, and construct validity. Four in person focus groups were held with 13 head and neck cancer patients. The process of item generation led to 221 relevant citations and 68 unique items. An additional 17 items were identified from review of existing neck disability questionnaires and expert opinion. A draft instrument with 25 candidate items was generated and reduced to its final 15-item scale using item impact method. Early psychometric testing revealed excellent internal consistency (Cronbach's alpha=0.95) and test-retest reliability [ICC=0.95]. Internal consistency at the item level was good (>0.7) for 11/15 individual items. Four separate constructs were evaluated. Three of the four constructs matched our a priori hypotheses. The Neck Fibrosis Scale demonstrates preliminary reliability and validity for discriminate use. Further research is needed to confirm dimensionality and assess responsiveness. NA Laryngoscope, 132:1015-1021, 2022.

NEW PARADIGMS IN CLINICAL STUDY DESIGN: PATIENT AND SPONSOR PERSPECTIVES FROM A FULLY REMOTE STUDY UTILIZING DIGITAL TECHNOLOGIES

TOPIC: Obstructive Lung Diseases TYPE: Original Investigations PURPOSE: Digital technologies offer opportunities to support patients, sites, and sponsors during clinical study preparation/conduct. ENERGITO 2 Digital Health (DH), a Phase IV, fully remote, exploratory study, provided insights related to proactive, sponsor strategic planning and patient participation perspectives that may enhance future clinical research. METHODS: COPD patients aged ≥40 y, smoking history of >10 pack-years, postbronchodilator FEV1 ≥30% to <80% predicted, postbronchodilator FEV1/FVC <70%, internet access, smartphone proficiency, and prior spirometry experience were randomized to a 12-week, double-blind study (tiotropium/olodaterol [T/O] 5/5 μg QD or fluticasone propionate/salmeterol [FP/SAL] 250/50 μg BID). All visits were completed remotely via telemedicine (e-Visit); all procedures—including electronic informed consent, and digital spirometry—were completed entirely remotely using digital technology. To support patient participation, remote/e-Visits could be converted to traditional clinic visits. Investigational medicinal product (IMP) was delivered directly to patients. Lung function and safety were assessed at each e-Visit. Six patient surveys were conducted during the study; patient responses ranged from “very easy to difficult; very satisfied to unsatisfied; very comfortable to uncomfortable.“ A patient focus group was conducted post-study completion. RESULTS: Of 18 patients enrolled, 11 (6 men/5 women; mean±SD age, 66.0±7.27 y) were randomized from 1 US site to T/O (n=6) or FP/SAL (n=5). Sponsor learnings from a protocol simulation were incorporated into the study design to support customer centricity and study conduct in scalability and process. Patient survey responses were generally favorable. Patients reported receiving direct IMP at home was easy and were satisfied with the study drug video training; spirometer training video was very easy to follow—most indicated that performing remote spirometry was easy. Few patients identified technical issues with the invitation process, negative experiences with IMP supplies, occasional spirometer nonfunctioning, and variable audio quality at e‑Visits. The patient focus group provided valuable feedback for future patient-centric, remote clinical trial planning/conduct: offering the flexibility of a combined personal/virtual engagement approach to enhance the patient experience, increased personal connection between clinic visits, and use of supplemental information videos. CONCLUSIONS: ENERGITO 2 DH demonstrated the feasibility of conducting a clinical study remotely in accordance with regulatory guidelines. Technology utilization and proactive and strategic integration of additional operational elements enabled patients to participate remotely as confirmed by patients during and post study completion. CLINICAL IMPLICATIONS: Data support the value of DH solutions in clinical development and use of remote supervised/unsupervised spirometry. DISCLOSURES: No relevant relationships by Sharon Attick, source=Web Response Employee relationship with Boehringer Ingelheim Please note: 1996 to 2021 Added 05/05/2021 by Joanne Franceschina, source=Web Response, value=Salary Principal Investigator relationship with Boehringer-Ingelheim Please note: January 2005 to December 2020 Added 04/30/2021 by Glenn Giessel, source=Web Response, value=Grant/Research Support Employee relationship with Boehringer Ingelheim Please note: 1997-2021 Added 05/05/2021 by Alan Hamilton, source=Web Response, value=Salary No relevant relationships by Patricia Harris, source=Admin input No relevant relationships by John Turner, source=Web Response

“It’s a place that gives me hope”: A qualitative evaluation of a buprenorphine-naloxone group visit program in an urban federally qualified health center

Background: Medication for opioid use disorder (MOUD) with buprenorphine is effective in treating opioid use disorder yet remains underutilized. Scant research has examined the experience of patients, clinic staff, and providers in a “low-threshold” group-based MOUD program. This study evaluates a “low-threshold” MOUD program at a federally qualified health center (FQHC) in Philadelphia, Pennsylvania through the perspectives of its key stakeholders. Methods: This qualitative study involved focus groups of patients, providers, and clinic staff. Focus groups were conducted between October 2017 and June 2018. Grounded theory was used for analysis. Results: There were a total of 10 focus groups, including 20 patient participants and 26 staff members. Program participants noted that a strength of the program is its person-centered harm reduction approach, which is reflected in the program’s policies and design. Program participants discussed the programmatic design choices that facilitated their participation and engagement in the program: ease of access, integration into primary care, and group-based visit model. Challenges in program implementation included varying acceptance and understanding of harm reduction among staff, the unpredictability of clinic volume and workflow, and the need to balance access to primary care and MOUD. Conclusion: This group-based MOUD program’s philosophy of person-centered harm reduction, low-barrier approach, the structure of group-based visits, and integrated care contributes to increased patient access and retention. Understanding the strengths and challenges of the program may be useful for other safety-net clinics considering a MOUD program.

Randomized Prospective Trial Exploring the Impact of Structured Journaling in Patients With Sarcoma on the Management of Treatment-Related Adverse Events.

PURPOSE:Treatment-related adverse events associated with systemic anticancer therapy (SACT) can deter patients with sarcoma from completing treatment. With self-monitoring, patients may be better empowered to self-advocate for improved symptom management. We hypothesized that by incorporating journaling, a structured form of self-monitoring, care team communication, and symptom management would improve. We thus designed a prospective randomized trial exploring journaling as a therapeutic adjuvant for symptom management (NCT03258892).METHODS:Participants with sarcoma initiating SACT were randomly assigned to receive either a symptom management journal at the start of SACT or after completing two cycles of SACT. Symptom journals were designed jointly by a cancer patient focus group and by education experts. Journals were reviewed with clinical staff at each visit. Participant responses were obtained through questionnaires. Patient call volume was obtained through the electronic health record.RESULTS:Of 64 participants consented for the trial, 53 were evaluable for analysis. Fifty-five percent of participants reported that the journal was at least moderately useful. These participants were more likely to report improved communication scores (P = .027), symptom management (P = .011), and quality of life (QOL) (P = .019). Participants who received the journal early were less likely to report a decrease in QOL as compared with the late journal group (P = .757 v P = .035).CONCLUSION:To our knowledge, this is the first prospective randomized trial evaluating the use of structured journaling as a low-cost means to improve treatment-related adverse event management and QOL in patients with sarcoma undergoing SACT. These promising results will need to be confirmed by additional studies.

Development and Piloting of a Patient-Centered Report Design for Stress Myocardial Perfusion Imaging Results

The management of coronary disease epitomizes the call to better engage patients in shared medical decision-making. Myocardial perfusion imaging (MPI) is the foundation of diagnosis, risk stratification, and subsequent therapy; however, MPI reports are currently interpretable by specialists but not patients. To design and test a patient-centered report for stress MPI test results. This qualitative study of outpatients who underwent an MPI stress test and clinicians used a mixed methods approach. Phase 1 (December 2018 to July 2019) used qualitative methods to design a patient-centered reporting tool, with 5 focus groups with 36 patients and 2 focus groups with 27 clinicians. Phase 2 (June to September 2019) consisted of pilot testing the reporting tool with feedback from a structured survey given to patients who received MPI reports before and after implementing the tool. Key themes around patient experiences with the current MPI reporting and their desire for a more useful report were identified, which led to a sample reporting tool after serial iterations with feedback. Differences in patient knowledge and engagement were assessed between patients before and after implementation of the new reporting tool using χ2 tests. From patient focus groups (26 patients; mean [SD] age, 66.3 [9.6] years, 9 [35%] women), 3 themes on the inadequacies of current MPI reporting were identified: (1) inconsistent delivery of results, (2) use of medical jargon, and (3) unclear posttest course. We identified 5 themes for a more patient-centered MPI report: desire for written information, discussion of the report with medical personnel, presentation of results in simple language with use of visual graphics, comparisons with normal results, and personalized risk estimates. In a pilot survey with 123 patients split into a pre-implementation group (69 patients; mean [SD] age, 68.2 [8.5] years; 27 [51%] women) and a postimplementation group (54 patients; mean [SD] age, 66.4 [8.7] years; 30 [56%] women), the patient-centered report led to more patients reading the entire report (45 [83%] vs 46 [67%]; P = .04) and improved knowledge of future risk of cardiac events (41 [76%] vs 20 [29%]; P < .001). There was also a numerically higher percentage of patients who found the report easy to read (45 [83%] vs 44 [68%]; P = .05) and understand (42 [78%] vs 43 [66%]; P = .16), although these results were not statistically significant. This study identified key elements of a patient-centered report design for stress MPI test results, which improved patient engagement and knowledge. These preliminary data support further implementation and study of a more patient-centered MPI report.

A patient decision aid for mild asthma: Navigating a new asthma treatment paradigm

IntroductionIn mild asthma, as-needed budesonide-formoterol offers similar protection from severe exacerbations as daily inhaled corticosteroids (ICS), with lower ICS exposure but slightly increased symptoms. We sought to develop an electronic decision aid to guide discussions about the pros and cons of these first-line options, while identifying and integrating user preferences. MethodsFollowing International Patient Decision Aid Standards, we created a mild asthma decision aid prototype comparing convenience, clinical outcomes, cumulative ICS dose exposure, costs, and side-effects of each option. After face validation, the prototype was iteratively adapted through rapid-cycle development. Each cycle consisted of a patient focus group and a primary care physician interview. We made user preference-based improvements after each round, until reaching a pre-set stopping criterion (no new critical issues identified). We then performed a summative qualitative content analysis. ResultsOver 5 cycles, we recruited 21 asthma patients (12/21 women, 10/21 ≥ 60 years old) and 5 physicians. Serial changes included simplification and reduction of text and reading level, inclusion of an ICS “myths” section and elaboration of patient-friendly infographics for numerical comparisons. User preferences fell within Content, Format, and tool use Process themes. In response to decision-making preferences, we created a complementary one-page conversation aid for patient-provider use at the point-of-care. ConclusionsWe present preference-based electronic patient decision and conversation aids for treatment of mild asthma. Our user preference analyses offer useful insights for development of such tools in other chronic diseases. These tools now require integration into point-of-care workflows for measurement of real-world uptake and impact.

26589 Spesolimab, an IL-36R inhibitor, may reduce symptoms of pain in patients with palmoplantar pustulosis – Results from a small pilot study

Palmoplantar pustulosis (PPP) is a chronic neutrophilic skin disease characterized by sterile neutrophil-filled pustules on the palms of the hands and soles of the feet, and PPP lesions can significantly impact patient quality of life. There has been little research on pain in PPP, and it may be underappreciated by the dermatology community as it was reported as a debilitating symptom during patient focus groups. Our results suggest that spesolimab may reduce pain severity in patients with PPP. This Phase IIa, multicenter, double-blind, randomized, placebo-controlled pilot study (NCT03135548) compared treatment with 900 mg spesolimab (n = 19), 300 mg spesolimab (n = 19), and placebo (n = 21) intravenously every four weeks until Week 12, with follow-up to Week 32, in patients with PPP.

Home blood pressure data visualization for the management of hypertension: using human factors and design principles

BackgroundHome blood pressure measurements have equal or even greater predictive value than clinic blood pressure measurements regarding cardiovascular outcomes. With advances in home blood pressure monitors, we face an imminent flood of home measurements, but current electronic health record systems lack the functionality to allow us to use this data to its fullest. We designed a data visualization display for blood pressure measurements to be used for shared decision making around hypertension.MethodsWe used an iterative, rapid-prototyping, user-centred design approach to determine the most appropriate designs for this data display. We relied on visual cognition and human factors principles when designing our display. Feedback was provided by expert members of our multidisciplinary research team and through a series of end-user focus groups, comprised of either hypertensive patients or their healthcare providers required from eight academic, community-based practices in the Midwest of the United States.ResultsA total of 40 participants were recruited to participate in patient (N = 16) and provider (N = 24) focus groups. We describe the conceptualization and development of data display for shared decision making around hypertension. We designed and received feedback from both patients and healthcare providers on a number of design elements that were reported to be helpful in understanding blood pressure measurements.ConclusionsWe developed a data display for substantial amounts of blood pressure measurements that is both simple to understand for patients, but powerful enough to inform clinical decision making. The display used a line graph format for ease of understanding, a LOWESS function for smoothing data to reduce the weight users placed on outlier measurements, colored goal range bands to allow users to quickly determine if measurements were in range, a medication timeline to help link recorded blood pressure measurements with the medications a patient was taking. A data display such as this, specifically designed to encourage shared decision making between hypertensive patients and their healthcare providers, could help us overcome the clinical inertia that often results in a lack of treatment intensification, leading to better care for the 35 million Americans with uncontrolled hypertension.

Shared decision making in pregnancy in inflammatory bowel disease: design of a patient orientated decision aid

BackgroundResearch has indicated a lack of disease-specific reproductive knowledge among patients with Inflammatory Bowel Disease (IBD) and this has been associated with increased “voluntary childlessness”. Furthermore, a lack of knowledge may contribute to inappropriate medication changes during or after pregnancy. Decision aids have been shown to support decision making in pregnancy as well as in multiple other chronic diseases. A published decision aid for pregnancy in IBD has not been identified, despite the benefit of pre-conception counselling and patient desire for a decision support tool. This study aimed to develop and test the feasibility of a decision aid encompassing reproductive decisions in the setting of IBD.MethodsThe International Patient Decision Aid Standards were implemented in the development of the Pregnancy in IBD Decision Aid (PIDA). A multi-disciplinary steering committee was formed. Patient and clinician focus groups were conducted to explore themes of importance in the reproductive decision-making processes in IBD. A PIDA prototype was designed; patient interviews were conducted to obtain further insight into patient perspectives and to test the prototype for feasibility.ResultsIssues considered of importance to patients and clinicians encountering decisions regarding pregnancy in the setting of IBD included fertility, conception timing, inheritance, medications, infant health, impact of surgery, contraception, nutrition and breastfeeding. Emphasis was placed on the provision of preconception counselling early in the disease course. Decisions relating to conception and medications were chosen as the current focus of PIDA, however content inclusion was broad to support use across preconception, pregnancy and post-partum phases. Favourable and constructive user feedback was received.ConclusionsThe novel development of a decision aid for use in pregnancy and IBD was supported by initial user testing.

Troubling Claims of Normalization: Continuing Stigmas within Michigan’s Medical Cannabis Community

ABSTRACT Cannabis has undoubtedly become more accessible and commonplace in American society, and scholars and laypeople commonly claim it has achieved a normalized status. On the other hand, structural and social stigmas still impact medical and non-medical cannabis users’ everyday lives. This study attempts to restore nuance to the academic debate on cannabis normalization. The primary method used here is focus groups of cannabis patients in Michigan (n = 21), which are occasionally supplemented by key informant interviews. Findings suggest cannabis patients face persistent cannabis-related stigmas and discrimination, even in a post-prohibition state like Michigan. These stigmas create tension for patients in their personal relationships, work environments, and sense of self. Furthermore, experiences of being a cannabis patient vary along the lines of age, gender, race, and occupational status. As such, this study suggests claims of normalization may be premature or symptomatic of social privileges.

Needs, Preferences, and Values during Different Treatment Decisions of Patients with Differentiated Thyroid Cancer.

Background: The purpose of this study was to identify the needs, preferences, and values of patients with differentiated thyroid cancer (DTC) and the physicians treating patients with DTC regarding two different treatment decisions, namely: the extent of primary surgery (low-risk patients) and the tyrosine kinase inhibitor (TKI) treatment (high-risk patients). Methods: A qualitative study was conducted. There were two physician focus groups discussing the extent of primary surgery. One included endocrinologists (n = 4) and surgeons (n = 5), and the other included nuclear medicine physicians (n = 3) treating patients with low-risk DTC. The physicians focus group discussing waiting or starting TKIs included endocrinologists (n = 2) and oncologists (n = 5) treating patients with advanced radioactive iodide (RAI) refractory DTC. Moreover, one patient focus group per treatment decision took place. In total 13 patients and 19 physicians participated. Interviews were audio-taped, fully transcribed verbatim, and analyzed. Results: Several themes were identified. Patients, but not physicians, mentioned the importance of a strong doctor–patient relationship. Patients in both treatment decision groups wanted to receive more detailed information, whereas physicians preferred providing more general information. Patients in the TKI decision group focused on palliative care, whereas physicians focused more on the effect and benefit of TKIs. Conclusions: Considering the identified themes in DTC, based on the patients’ needs, preferences, and values, enables us to improve doctor–patient communication and to develop decision support tools.

Fear and Frustration among Women with Recurrent Urinary Tract Infections: Findings from Patient Focus Groups.

We investigated the perspectives of women suffering from recurrent urinary tract infections using patient focus group discussions with an emphasis on patient attitudes toward the current prevention and treatment of urinary tract infection episodes. Twenty-nine women with recurrent urinary tract infections were recruited from a tertiary urology practice to participate in one of 6 focus groups. Participants were asked questions related to urinary tract infection knowledge, prevention strategies, treatment and impact on quality of life. Grounded theory methods were used to analyze focus group transcripts and identify preliminary themes that describe patient attitudes toward current management strategies for recurrent urinary tract infections. The median age of participants was 46 years (range 20-81). The majority were Caucasian and held a college degree. The 7 preliminary themes identified during discussions fell into 2 categories: 1) negative impacts of taking antibiotics for prevention and treatment of recurrent urinary tract infections, and 2) resentment of the medical profession regarding their management of recurrent urinary tract infections. From the preliminary themes, the emergent concepts of "fear" and "frustration" became evident. Focus group discussions of women with recurrent urinary tract infections suggest that many women are fearful of the adverse effects of antibiotics and are frustrated with the medical profession for not addressing their fears and optimizing antibiotic stewardship. There is a need for physicians to modify management strategies to address these concerns and to devote more research efforts to improving the nonantibiotic options for prevention and treatment of recurrent urinary tract infections, as well as management strategies that better empower patients.