Patient Focus Groups Research Articles

Validation and testing of the Russian version of PHPQoL questionnaire for quality of life assessment in patients with primary hyperparathyroidism (PHPT)

ОбоснованиеОбоснование. Оценка качества жизни до и после хирургического лечения при первичном гиперпаратиреозе (ПГПТ) может быть использована для комплексной оценки эффекта терапии, а также мониторинга состояния больного после операции, в том числе в реальной клинической практике.ЦельЦель. Целью исследования являлась валидация русской версии опросника PHPQoL для оценки качества жизни у больных первичным гиперпаратиреозом (ПГПТ) и его апробация в отечественной популяции больных ПГПТ с целью дальнейшего применения в клинической практике и научных исследованиях.Материалы и методыМатериалы и методы. В соответствии с международными стандартами проведены процедура языковой и культурной адаптации опросника PHPQoL, а также тестирование в фокусной группе больных ПГПТ с последующей оценкой психометрических свойств инструмента — надежности, валидности и чувствительности.РезультатыРезультаты. В исследовании участвовали 65 больных ПГПТ (средний возраст — 52,3±10,5 года, 97% — женщины), из которых у 67,7% установлена манифестная форма заболевания, у 35,4% пациентов имелась умеренная или тяжелая форма гиперкальциемии. Все пациенты заполняли валидированную нами русскую версию опросника PHPQoL до паратиреоидэктомии. Треть пациентов заполнили опросник повторно через 3 мес после операции. В ходе апробации опросника продемонстрированы высокие показатели его внешней и содержательной валидности, а также показана устойчивая структура инструмента, свидетельствующая об удовлетворительной конструктной валидности опросника. Также показана способность опросника определять различия показателей симптомов/проблем ПГПТ между пациентами в зависимости от выраженности клинических признаков заболевания и в процессе лечения. Продемонстрирован положительный эффект хирургического лечения на качество жизни больных ПГПТ после операции.ЗаключениеЗаключение. Результаты, полученные в ходе исследования, свидетельствуют о надежности, валидности и чувствительности русской версии опросника PHPQoL и приемлемости его дальнейшего использования в научных исследованиях и клинической практике в отечественной эндокринологии.

A Newly Developed Web-Based Resource on Genetic Eye Disorders for Users With Visual Impairment (Gene.Vision): Usability Study.

BackgroundDespite the introduction of the Web Content Accessibility Guidelines and legislations, many websites remain poorly accessible to users with disability, especially those with visual impairment, as the internet has become a more visually complex environment. With increasing reliance on the internet and almost 2 million people in the United Kingdom being affected by vision loss, it is important that they are not overlooked when developing web-based materials. A significant proportion of those affected have irreversible vision loss due to rare genetic eye disorders, and many of them use the internet as a primary source of information for their conditions. However, access to high-quality web-based health information with an inclusive design remains a challenge for many. We have developed a new web-based resource for genetic eye disorders called Gene.Vision that aims to provide a holistic guide for patients, relatives, and health care professionals.ObjectiveThrough a usability testing session of our website prototype, this study aims to identify key web-based accessibility features for internet users with vision impairment and to explore whether the contents provided in Gene.Vision are relevant and comprehensible.MethodsA face-to-face testing session with 8 participants (5 patients, 2 family members, and 1 member of the public) and 8 facilitators was conducted on a prototype website. Remote testing was performed with another patient due to COVID-19 restrictions. Home page design, navigation, content layout and quality, language, and readability were explored through direct observation and task completion using the think-aloud method. A patient focus group was organized to elicit further feedback. Qualitative data were gathered and analyzed to identify core themes through open and axial coding.ResultsAll participants had good computer literacy; 6 patients with visual impairment used visual aid software including iOS VoiceOver and Speak Screen, iOS Classic Invert, ZoomText 2020, Job Access With Speech, and Nonvisual Desktop Access. The features identified by the participants that will enhance accessibility and usability for users with visual impairment were a consistent website layout, a structured information hierarchy with a clear description of links, good chromatic and luminance contrast, a simple home page with predictable and easy navigation, adaptability to various assistive software, and readable and relevant content. They reported that dynamic content (such as carousels) and large empty spaces reduced accessibility. Information on research, support available, practical advice, and links to charities were incentives for repeated website visits.ConclusionsWe demonstrated the importance of developing a website with a user-based approach. Through end user testing, we identified several key web-based accessibility features for people with visual impairment. Target end users should always be involved early and throughout the design process to ensure their needs are met. Many of these steps can be implemented easily and will aid in search engine optimization.

Development of a Decision Aid for Patients and Families Considering Hospice.

Background: Hospice is underutilized. Miscommunication, decisional complexity, and misunderstanding around engaging hospice may contribute. Shared decision making (SDM), aided by patient decision aids (PtDAs), can improve knowledge and decision quality. Currently, there are no freely available hospice-specific PtDA to facilitate conversions between patients and providers about hospice care. Objective: To develop a theory-based and unbiased hospice specific PtDA. Design: Guided by the Ottawa Decision Support Framework and International Patient Decision Aid Standards, we used a theory-driven, eight-step, iterative, user-centered approach with multistakeholder input to develop a hospice-specific PtDA for anyone facing end-of-life decisions. Subjects: Feedback was obtained from a 10-member Patient Advisory Panel composed of lay patient advisors; focus groups of hospice providers, family caregivers, and patients; and the Palliative Care Research Group at University of Colorado Hospital consisting of palliative care physicians, midlevel providers, nurses, social workers, chaplains, and researchers. Results: There are many challenges in developing an unbiased hospice decision aid, including (1) balancing the provision of education (eligibility, payment) with decisional support, (2) clarifying values and incorporating emotion, (3) ideally representing the potential downsides of hospice, and (4) adequately capturing and describing care alternatives to hospice. Within this context, we developed a 12-page article and 17-minute video PtDAs. The PtDA openly acknowledges the emotional complexity of the decision and incorporates values clarification techniques to help decision makers reflect and evaluate their goals and preferences for end-of-life care. Conclusions: Hospice decision making is complex and emotional, demanding high-quality SDM aided by a formal PtDA. This work resulted in a freely available article and video PtDA for patients considering hospice. The effectiveness and implementation of these tools will be studied in future research. Clinical Trials Registration (NCT03794700 & NCT04458090).

Patient Perspectives of IBD Care and Services: An Integral Part of a Pan-Canadian Quality Improvement Initiative.

BackgroundAs beneficiaries of health service improvement initiatives, patients should have their perspectives of and gaps in care elicited to inform and guide the development of quality indicators to assess health care services. The purpose of this study was to identify patient perspectives amenable for conversion into measurable inflammatory bowel disease (IBD) care quality indicators.MethodsCrohn’s and Colitis Canada’s Promoting Access and Care through Centres of Excellence (PACE) program organized four patient focus groups in three Canadian provinces in 2016 to capture the perspective of patients on IBD care services. The RQDA package in R was used for transcript analysis, theme identification and for building a theme hierarchy based on the number of citations. The main themes were converted into patient-derived quality indicators.ResultsSeveral perceived unmet needs were elicited from participants that could be converted into measurable quality indicators. These unmet needs addressed the need for information, access to multidisciplinary services and specialized care, and access to psychological support. Patient unmet needs informed the selection of nine quality indicators that were included in the final list of PACE indicators to assess IBD care services across Canada.ConclusionsOur study provides a detailed description of patient perspectives on IBD care services that were an integral part of the development of measurable indicators of the quality of care in the context of a universal health care system.

RETention of urine After INguinal hernia Elective Repair (RETAINER study I and II).

Purpose:Post-operative urinary retention (POUR) is a well-recognised complication of inguinal hernia repair (IHR). The magnitude of the problem is unclear, and contradictory evidence surrounds postulated risk factors. POUR risks patient distress, catheter-complications and a financial and logistical burden to services. Separately, in the field of IHR, there has been a lack of research into patients’ perceptions of surgical ‘success’. Our aim is to perform a two-phase, multi-centre prospective study to:Assess the rate, risk factors and impact related to POUR post IH repair.Develop and validate a patient reported outcome measure (PROM) for inguinal hernia repair.Methods:RETAINER I: We propose a 24-week prospective study with voluntary international participation in 4 week blocks. All patients undergoing elective IH repair (minimally-invasive/open) will be eligible. Standardised data collection will include patient and perioperative factors. Primary outcome will be development of POUR, defined as the need for insertion of a urinary catheter as determined by the treating clinician. Secondary outcomes will be identification of factors predisposing to POUR and the impact of POUR.RETAINER II: A patient reported outcome measure will be developed using representative patient focus groups for item generation, from which an initial questionnaire will be developed and piloted. Validity, reliability, sensitivity and reproducibility will be assessed using the QQ-10 and standard psychometric methodology.Conclusions:Using an international multicentre collaborative approach will produce the necessary volume of patients, whilst capturing inter-centre variability, to accurately reflect POUR rates and allow analysis of risk factors. This patient pool will provide an excellent opportunity to develop a PROM using appropriate qualitative methodology.Highlights: RETAINER I & II ProtocolsRETAINER (RETention of urine After INguinal hernia Elective Repair) I is a prospective, multicentre, international observational study.RETAINER I aims to explore the incidence of and risk factors for urinary retention following elective inguinal hernia repair.Urinary retention following inguinal hernia repair has a marked impact on patients and creates a significant financial and logistical burden for hospital services.RETAINER II is a prospective, qualitative study, recruiting patients to guide the creation of a patient-reported outcome measure (PROM) for elective inguinal hernia repair.

Information needs for recovery after colorectal surgery: a patient focus group study.

The provision of information to patients is an important part of recovery after colorectal surgery. This study aimed to define patient information needs, barriers to effective understanding and insights into how information provision may be improved. A patient focus group was convened. This comprised a broad, convenience sample of 11 participants from across the United Kingdom with experience of major colorectal surgery. A semistructured topic guide was used to facilitate discussion about previous experiences of information provision and how this may be improved. Data were analysed thematically and are presented as major themes. Overall, participants felt that their information needs are poorly prioritized by healthcare professionals. Barriers to understanding and retaining information include highly emotional situations (such as receiving bad news) and inappropriate information design (such as the use of inaccessible language). Participants expressed how information resources should: (a) address patients' individual information needs; (b) empower patients to take an active role in their recovery; (c) support patients with meaningful education and sign-posted resources; and (d) recognize patients' heightened need for information during recovery at home. This study provides key insights into the information needs of patients undergoing colorectal surgery. These should inform the development of future information resources, whose format, timing and design are currently supported by low-quality evidence.

"I know my body better than you:" patient focus groups to inform a decision aid on oral corticosteroid use during pregnancy.

There is unmet need for decision support regarding medication use during pregnancy. We aimed to inform the development of a decision aid on oral corticosteroid (OCS) use during pregnancy through focus groups. We invited patients from one health system who had a recent live birth and a condition for which OCSs may be prescribed (ie, asthma or other autoimmune disease) to participate in focus groups. We conducted conventional qualitative content analysis of verbatim transcripts of the focus groups using inductive coding. There were 30 participants across five focus groups from May to June 2019. Women endorsed the need for patient-provider discussions about OCS use during pregnancy in which the provider shares risks and benefits and the patient makes her decision. Furthermore, women generally expressed support for patient-centered handouts about OCS use during pregnancy that the provider discusses with the patient. When considering whether to take OCSs in pregnancy, women had concerns about: the medication's impact on their baby (eg, miscarriage, birth defects, long-term effects), themselves (eg, effects on mood, sleep, weight gain), pregnancy complications (eg, preterm birth, increased blood pressure), and lactation. Women wanted information on OCSs (eg, indications, length of treatment, and cost), alternative treatments, and risks of not taking OCSs. We established patient need for a decision aid on OCS use during pregnancy that providers can discuss with patients. To address patient concerns, the aid should at a minimum describe the medication's impact on baby, including long-term effects, maternal health, pregnancy complications, and lactation.

Pharmacist-led heart failure patient focus group using mobile apps-based intervention mix

AbstractObjectivesThe impact of clinical pharmacists on inpatient heart failure (HF) care has been proven in many studies. Evidence regarding the use of mobile apps by pharmacists to achieve positive clinical outcomes in HF is limited. The purpose of this study is to examine the impact of a pharmacist-led HF patient focus group using mobile apps-based intervention mix.MethodsIn this pre–post-exploratory study, using an intervention mix of hospital discharge counselling, MyTherapy app, WhatsApp and occasional phone calls to improve clinical outcomes in HF. Patient medication adherence, health-related quality of life (HRQoL) and 30-day all-cause hospital readmission rate were assessed. The Wilcoxon Signed-Rank Test was used to find statistical significance of improvements in medication adherence and HRQoL using SPSS software version 26.Key findingsThe intervention mix of initial hospital-discharge counselling, MyTherapy app, follow-up with the WhatsApp group and occasional phone calls established an effective communication with patients. All 10 patients had improvements in their clinical outcomes. Significant improvements in medication adherence and HRQoL were found (Z-value −2.810 and Z-value −2.805, respectively; 95% confidence interval). No patients were readmitted in 30 days or within 3 months of study.ConclusionsA pharmacist-led HF patient focus group using mobile apps-based intervention mix was found to be effective in improving clinical outcomes in HF patients. Further research should be performed on long-term effects of our approach.

User experience with a voice-enabled smartphone app to collect patient-reported outcomes in rheumatoid arthritis.

Rheumatoid arthritis (RA) is a chronic disease, requiring frequent patient-provider interaction and self-monitoring. We developed a novel mobile health smartphone app with a voice-enabled feature to help patients virtually track disease activity and ask general questions about RA. With a user-centered design (UCD) approach, we developed a voice-enabled app (VEA) which was then tested in two focus groups of patients (n=8) and one with providers (n=4). Voice enablement and a question and answer (Q & A) library function were previously requested by patients. Based on focus group feedback, the VEA was refined and tested with 26 patients for 56 days. The VEA asked patients to fill in daily patient-reported outcomes (PROs) and complete the trial with a satisfaction survey. Of the 26 patients in the VEA trial, 77% were female and 50% were aged 55 and older. Adherence to daily PROs during the 56-day trial was 66%, with <1% of PROs completed using the voice-enabled feature. PROMIS short forms and RADAI-5 PROs remained stable. Of the 22 satisfaction survey respondents, 86% were satisfied with their overall experience with the app and 18.5% were satisfied with voice enablement. The voice assistant had an 86% success rate at understanding and answering interactions regarding surveys and a 44% success rate regarding Q & A interactions. We developed a novel VEA through a UCD framework and conducted pilot testing. Adherence was moderate and RADAI-5 and PROMIS measures were stable. Based on satisfaction results, PROs may not be the best use of voice enablement technology.

Testing and validation of the Russian version of quality of life questionnaire in patients with GERD - GERD-HRQL

This study aimed to test the Russian version of GERD-HRQL in the focus group of patients with GERD, as well as to evaluate its psychometric properties reliability, validity and sensitivity. The total of 57 patients with GERD (mean age 45.812.4 years, 72% women, 68% patients with not erosive reflux disease, 84% had esophageal manifestations of GERD) were enrolled into the study. All the patients filled out the Russian version of GERD-HRQL and generic quality of life questionnaire RAND SF-36 during the routine visit to the gastroenterologist. According to the results of testing of GERD-HRQL, it was clear and easy to complete for patients and reflected the main concerns specific for GERD patients. The most frequent and bothersome symptoms/problems which interfered with quality of life in GERD patients were heartburn (100% of patients) and bloating (84% of patients). During the validation procedure, the high reliability and validity of the Russian version of GERD-HRQL were demonstrated. It was shown that the tool was sensitive both to changes over time and to clinically determined differences in patients status. The Total GERD-HRQL Score was significantly higher (worse quality of life) in the following groups: a) patients who had esophageal manifestations of GERB vs those without esophageal manifestations of GERB; b) patients with GERD complications vs those without GERD complications, c) patients with comorbidities of upper gastrointestinal tract vs without those comorbidities; d) patients with erosive esophagitis vs with non-erosive reflux disease (p0.05). The developed Russian version of the GERD-HRQL questionnaire proved to have high psychometric properties and may be used in the Russian population of GERD patients both in research studies and in a real clinical practice.

What matters to patients: Parental and caregiver opinions on International Consortium for Health Outcomes Measurements overall health outcomes for children in Singapore

Background: Health in children is multifaceted. More than just the absence of disease, good child health also comprises psychological well-being and social functioning. In paediatrics, optimal health care is a partnership between caregivers and doctors. Value-based medicine strengthens this partnership. Monitoring and tracking these patient-reported outcomes using validated measurement tools in a life-course manner helps us to understand and ultimately improve overall child health better. Objectives: This study aimed to assess parental opinions in Singapore on recommended outcome measures and approach recommended by the International Consortium for Health Outcomes Measurements (ICHOM) Overall Pediatric Health (OPH) working group. Methods: An international working group comprising 25 experts in paediatric health was formed under the auspices of ICHOM. Through a series of literature reviews, patient focus groups and open review periods, a set of health outcomes and case-mix variables was proposed, with the aim of improving paediatric care globally. Parents and caregivers were invited to participate in this survey from around the world, including from the USA, UK, Colombia and Singapore. The survey covered domains that were included in the ICHOM OPH Standard Set. An international anonymised online patient validation survey tool online survey was initiated to evaluate caregiver opinions of these proposed ICHOM OPH outcomes, and this was conducted from November 2019 to January 2020. Singapore participated in this caregiver survey on overall paediatric health outcomes. Of the 270 respondents in this ICHOM OPH consumer international open review online survey, 160 were from Singapore. We report here a cross-sectional study with data from the Singapore group of respondents. Results: Of the 160 responses from Singapore, 73.8% had no more than two children, and 38.8% of caregivers had children between 0 and 5 years old. In general, 76.9% of caregivers were satisfied with the health care that they received, and 60% of caregivers had had between one and four health-care appointments in the last 12 months. Assessment was done on a scale of 1 to 9, with importance defined as a score of ⩾7. All outcome measures were ranked to be important, with an overall mean score of 7.9 on a scale ranging from 1 to 9. Development was assessed as being the most important ( M=8.34±0.93), and sexual health was assessed as being the least important ( M=7.09±1.71). Almost all respondents felt that the list of ICHOM-recommended outcomes proposed was complete. Parents and caregivers in Singapore placed development and mental health as the most important across all age groups surveyed. They felt that the framework provided by the ICHOM OPH working group was adequate in addressing their concerns. Most parents and caregivers were satisfied with the health care they had received. Conclusion: Child health is a continuum that requires longitudinal attention from both the family and the clinician, and should take a life-course approach, utilising validated measurement tools to monitor and track key parameters. Parents and caregivers in Singapore place high importance on their child’s development and mental functioning. While there has been much community effort on development and mental functioning in children, more can be done in these two areas and to increase the emphasis and awareness on sex education both within the home and in schools. A framework for evaluating children during follow-up clinic visits would be helpful in continuing longitudinal care of children to provide holistic care and to improve adult health in the long term, guided by the framework set down by the ICHOM OPH standard set. As we recognise and embrace the importance not just of health care but the health of the next generation, we will need to use validated measurement tools to monitor and track these importance parameters in the journey of our children, so that we can identify and improve these outcomes in a timely manner.

2020 Focused Updates to the Asthma Management Guidelines: A Report from the National Asthma Education and Prevention Program Coordinating Committee Expert Panel Working Group

The 2020 Focused Updates to the Asthma Management Guidelines: A Report from the National Asthma Education and Prevention Program Coordinating Committee Expert Panel Working Group was coordinated and supported by the National Heart, Lung, and Blood Institute (NHLBI) of the National Institutes of Health. It is designed to improve patient care and support informed decision making about asthma management in the clinical setting. This update addresses six priority topic areas as determined by the state of the science at the time of a needs assessment, and input from multiple stakeholders: Fractional Exhaled Nitric Oxide TestingIndoor Allergen MitigationIntermittent Inhaled CorticosteroidsLong-Acting Muscarinic AntagonistsImmunotherapy in the Treatment of Allergic AsthmaBronchial ThermoplastyA rigorous process was undertaken to develop these evidence-based guidelines. The Agency for Healthcare Research and Quality’s (AHRQ) Evidence-Based Practice Centers conducted systematic reviews on these topics, which were used by the Expert Panel Working Group as a basis for developing recommendations and guidance. The Expert Panel used GRADE (Grading of Recommendations, Assessment, Development and Evaluation), an internationally accepted framework, in consultation with an experienced methodology team for determining the certainty of evidence and the direction and strength of recommendations based on the evidence. Practical implementation guidance for each recommendation incorporates findings from NHLBI-led patient, caregiver, and clinician focus groups. To assist clincians in implementing these recommendations into patient care, the new recommendations have been integrated into the existing Expert Panel Report-3 (EPR-3) asthma management step diagram format.

Cognitively Impaired Older Persons' and Caregivers' Perspectives on Dementia-Specific Advance Care Planning.

Advance care planning (ACP) traditionally involves asking individuals about their treatment preferences during a brief period of incapacity near the end of life. Because dementia leads to prolonged incapacity, with many decisions arising before a terminal event, it has been suggested that dementia-specific ACP is necessary. We sought to elicit the perspectives of older adults with early cognitive impairment and their caregivers on traditional and dementia-specific ACP. Qualitative study with separate focus groups for patients and caregivers. Memory disorder clinics. Twenty eight persons aged 65+ with mild cognitive impairment or early dementia and 19 caregivers. Understanding of dementia trajectory and types of planning done; how medical decisions would be made in the future; thoughts about these decisions. No participants had engaged in any written form of dementia-specific planning. Barriers to dementia-specific ACP emerged, including lack of knowledge about the expected trajectory of dementia and potential medical decisions, the need to stay focused in the present because of fear of loss of self, disinterest in planning because the patient will not be aware of decisions, and the expectation that involved family members would take care of issues. Some patients had trouble engaging in the discussion. Patients had highly variable views on what the quality of their future life would be and on the leeway their surrogates should have in decision making. Even among patients with early cognitive impairment seen in specialty clinics and their caregivers, most were unaware of the decisions they could face, and there were many barriers to planning for these decisions. These issues would likely be magnified in more representative populations, and highlight challenges to the use of dementia-specific advance directive documents.

Development and validation of the Epilepsy Surgery Satisfaction Questionnaire (ESSQ-19).

No validated tools exist to assess satisfaction with epilepsy surgery. We aimed to develop and validate a new measure of patient satisfaction with epilepsy surgery, the 19-item Epilepsy Surgery Satisfaction Questionnaire (ESSQ-19). An initial 31-item measure was developed based on literature review, patient focus groups, thematic analysis, and Delphi panels. The questionnaire was administered twice, 4-6weeks apart, to 229 adults (≥18years old) who underwent epilepsy surgery ≥1year earlier, at three centers in Canada and one in Sweden. Participants also completed seven validated questionnaires to assess construct validity. Exploratory factor analysis (EFA) and confirmatory factor analysis (CFA) assessed the factorial structure of the questionnaire. Cronbach alpha and intraclass correlation coefficients (ICCs) assessed the internal consistency and test-retest reliability of the ESSQ-19. Spearman and polyserial correlations assessed construct validity. Median age of participants and time since surgery were 42years (interquartile range [IQR] = 32-54) and 5years (IQR = 2-8.75), respectively. EFA and CFA yielded 18 items that segregated into four domains (mean score [SD]), namely, seizure control (76.4 [25]), psychosocial functioning (67.3 [26]), surgical complications (84 [22]), and recovery from surgery (73 [24]), one global satisfaction item, and a summary global score (74 [21]). The domain and summary scores demonstrated good to excellent internal reliability (Cronbach ⍺ range=.84-.95) and test-retest reliability (ICC range=0.71-0.85). Construct validity was supported by predicted correlations with other instruments. The ESSQ-19 is a new, valid, and reliable measure of patient satisfaction with epilepsy surgery that can be used in clinical and research settings.

Essential Components of an Interstitial Lung Disease Clinic: Results From a Delphi Survey and Patient Focus Group Analysis

BackgroundManagement of patients with interstitial lung disease (ILD) requires subspecialized, comprehensive, multidisciplinary care. The Pulmonary Fibrosis Foundation established the Care Center Network (CCN) in 2013 with identified criteria to become a designated CCN site. Despite these criteria, the essential components of an ILD clinic remain unknown.Research QuestionsHow are ILD clinics within the CCN structured? What are the essential components of an ILD clinic according to ILD physician experts, patients, and caregivers?Study Design and MethodsThis study had three components. First, all 68 CCN sites were surveyed to determine the characteristics of their current ILD clinics. Second, an online, three-round modified Delphi survey was conducted between October and December 2019 with 48 ILD experts participating in total. Items for round 1 were generated using expert interviews. During rounds 1 and 2, experts rated the importance of each item on a 5-point Likert scale. The a priori threshold for consensus was more than 75% of experts rating an item as important or very important. In round 3, experts graded items that met consensus and ranked items deemed essential for an ILD clinic. Third, ILD patient and caregiver focus groups were conducted and analyzed for content to determine their perspectives of an ideal ILD clinic.ResultsForty items across four categories (members, infrastructure, resources, and multidisciplinary conference) achieved consensus as essential to an ILD clinic. Patient and caregiver focus groups identified three major themes: comprehensive, patient-centered medical care; expanded access to care; and comprehensive support for living and coping with ILD.InterpretationThe essential components of an ILD clinic are well-aligned between physician experts and patients. Future research can use these findings to evaluate the impact of these components on patient outcomes and to inform best practices for ILD clinics throughout the world.

Patients' Willingness and Perspectives Toward Chimeric Antigen Receptor T-Regulatory Cell Therapy for Inflammatory Bowel Diseases.

Inflammatory bowel disease is a life-changing disease resulting from recurrent intestinal inflammation. Current therapies (eg, steroids and biologics) are associated with mild to severe side effects, and none provide a cure. Recent research has focused on genetically engineering gut-specific anti-inflammatory T-regulatory cells (CAR-Tregs) to control intestinal inflammation, a logistically and conceptually complex approach. The purpose of our study was to understand patients' willingness to try CAR-Treg given 2 hypothetical scenarios-in a clinical trial or as a new treatment. We surveyed people living with inflammatory bowel disease about their willingness to try CAR-Treg. The online survey was developed using patient focus groups and associated literature. We recruited participants through email and social media. We used descriptive and inferential statistics to analyze closed-ended questions and inductive thematic analysis to analyze open-ended follow-up questions. Survey participants indicated high willingness to try CAR-Treg therapy in both a clinical trial and as a new treatment. Willingness to try was not correlated with disease state or medication history. Women were less likely than men to indicate willingness to participate in a clinical trial. Participants' reasons for being willing to try CAR-Treg therapy included the wish to change their current treatment and the calling to participate in research. Participants that were not willing to try CAR-Treg mentioned the lack of long-term data and the success of their current therapy. This is the first study to our knowledge to investigate patient willingness to try CAR-Treg therapy. Our results demonstrate the promise of moving this therapy into clinical practice as most patients indicated willingness to try.

Mixed Methods Study of Patient and Primary Care Provider Perceptions of Chronic Pain Treatment

ObjectiveA mixed-method study involving patient focus groups and survey of primary care providers (PCPs) sought to compare perspectives about chronic pain (CP) and its treatment. Our goal was to identify needs and barriers for facilitating patient-centered care. MethodsTwo focus groups of CP patients from a single academic medical center explored interactions with PCPs and their understandings, experiences, and expectations of CP treatment. They were also asked their opinions about self-assessment/communication tools. We compared themes with survey data from two PCP research networks. ResultsCP patients understand opioid risks and fear PCP judgement and condescension, while sensing PCP fear and avoidance of opioid prescribing. PCPs are dissatisfied with their ability to provide optimal CP care, despite feeling that patients are generally satisfied with their clinic visits. Evaluation tools, especially assessment of functional activities, are favorably viewed by all, but deemed time prohibitive. ConclusionPatients’ understanding of opioid risks, desire for attention on functional goals and behavioral treatment may be greater than PCPs perceive. Such gaps in understanding and attitudes, if recognized, could support high-quality communication and interventional strategies. Practice ImplicationsThese findings guide patient-PCP communication toward alignment of treatment goals and enhanced coordination of care.

Patient experience with a large-scale integrated behavioral health and primary care initiative: A qualitative study.

Introduction: Patient engagement in research can improve a health system's responsiveness to patient need, but patient experience with integrated care is not well understood. This qualitative study explores patient experience and provider perceptions of patient experience with the Behavioral Health Integration and Complex Care Initiative (BHICCI), which is a large-scale system redesign that delivers integrated care to persons with complex needs. Methods: We conducted 8 patient focus groups (n = 54 patients) and n = 32 interviews with BHICCI providers at five community health settings participating in the BHICCI during which patients and providers described how patient experience with care had changed under the initiative. Results: Patient experience and provider perception of patient experience aligned under 2 themes: (a) care coordination is essential for positive patient experience; and (b) the BHICCI strengthened patient provider relationships. Perspectives diverged under theme (c) patient experience with programmatic "growing pains." Discussion: This study highlights the importance of seeking outpatient feedback and incorporating these experiences into the redesign of integrated care systems. Formal mechanisms, such as patient advisory boards, are needed to ensure that health care quality improvement initiatives are patient centered. (PsycInfo Database Record (c) 2020 APA, all rights reserved).

Understanding perceptions and factors involved in do not resuscitate (DNR) decision making in the emergency department of a low-resource country: a mixed-methods study protocol.

IntroductionDo not resuscitate (DNR) decision making is an integral component of emergency medicine practice. There is a paucity of data, protocols and guidelines regarding the perceptions and barriers that are involved in the interactions among healthcare professionals, patients and their caregivers regarding DNR decision making. The aim of this study is, therefore, to explore the perceptions and factors influencing DNR decision making in the emergency department and to evaluate the use of a context-based protocol for DNR decision making.Methods and analysisThis will be a sequential mixed method study beginning with qualitative research involving in-depth interviews (IDIs) with patient family members and focus group discussion with healthcare professionals. The consensual qualitative approach will be used to perform a thematic analysis to the point of saturation. The expected outcome will be to identify key themes that suggest perceptions and factors involved in DNR decision making. After piloting, the derived protocol will then be used with a different group of individuals (150 healthcare professionals) who meet the eligibility criteria in a quantitative cross-sectional study with universal sampling. Data will be analysed using NVIVO in the qualitative phase and SPSS V.19 in the quantitative phase. The study findings will support the development of a standardised protocol for DNR decision making for healthcare professionals in the emergency department.Ethics and disseminationThe proposal was reviewed by the ethics review committee (ERC) of the institution (ERC # 2020-1551-7193). The project is an institution SEED grant recipient PF139/0719. The results will be disseminated among participants, patient communities and healthcare professionals in the institution through seminars, presentations, brochures and emails. The findings will be published in a highly accessed peer-reviewed medical journal and will be presented at international conferences.

Importance and Assessment of Quality of Life in Symptomatic Permanent Atrial Fibrillation: Patient Focus Groups from the RATE-AF Trial

Aims: To establish the extent and impact of symptoms in patients with atrial fibrillation (AF), the importance of different aspects of quality of life (QoL), and how we should assess wellbeing. Methods: Focus groups of patients with symptomatic permanent AF in a trial of heart rate control; the RATE-AF trial randomised 160 patients aged ≥60 years with permanent AF and at least NYHA class II dyspnoea to either digoxin or beta-blockers. Patient and public representatives led the focus groups and performed all data acquisition and analysis, using thematic approaches to interpret patient views about QoL and its measurement. Results: Substantial impairment of health-related QoL was noted in 160 trial patients, with impact on all domains apart from mental health. Eight women and 11 men aged 61–87 years participated in the focus groups. Common themes were a lack of information from healthcare professionals about AF, a lack of focus on QoL in consultations, and a sense of frustration, isolation, and reduced confidence. There was marked variability in symptoms in individual patients, with some describing severe impact on activities of daily living, and profound interaction with comorbidities such as arthritis. Day-to-day variation in QoL and difficulty in attributing symptom burden to AF or other comorbidities led to challenges in questionnaire completion. Consensus was reached that collecting both general and AF-specific QoL would be useful in routine practice, along with participation in peer support, which was empowering for the patients. Conclusions: The impact of comorbidities is poorly appreciated in the context of AF, with considerable variability in QoL that requires both generic and AF-specific assessment. Improvement in QoL should direct the appraisal, and reappraisal, of treatment decisions for patients with permanent AF.