Individual Patient Interviews Research Articles

Australian adaptation and external validation of Commissioning for Quality in Rheumatoid Arthritis-RA-Patient Reported Experience Measure (CQRA-RA-PREM).

To evaluate the reliability and validity of an adapted Commissioning for Quality in Rheumatoid Arthritis-RA-Patient-Reported Experience Measure (CQRA-RA-PREM) for assessing care experience in an Australian rheumatology outpatient cohort. Individual patient interviews were performed to check the language and completion time of the CQRA-RA-PREM before modification. Australian Rheumatology Association Database (ARAD) participants completed the CQRA-PREM-Australian version (CQRA-PREM-AU) (22 items, 5 domains), disease activity measure (RAPID-3, BASDAI) and Assessment of Quality of Life (AQOL-6D) index. Exploratory factor analysis (EFA) assessed item correlation. Cronbach's α assessed internal consistency. Individual patient interviews (n = 8, 62% male, mean age 50 years, mean disease duration 4.5 years) informed CQRA-RA-PREM modification. The ARAD survey response rate was 707/1124 (63%); 459 (65%) RA, 134 (19%) PsA, 114 (16%) AS; 67% female, mean age 62 years, mean disease duration 22 years. The median instrument completion time was 299 s (interquartile range 284-414). Scoring of responses allowed an averaged overall score. EFA extracted five factors: all items loading similarly onto factor 1, indicating validity of the overall score. The CQRA-PREM-AU score correlated with the AQOL-6D score (ρ = 0.23, P < 0.01); partial correlation with disease activity was not significant (ρ = 0.03, P = 0.45), indicating divergent validity. Reliability was comparable across disease subgroups (Cronbach's α >0.94). The mean overall score did not differ by disease subgroup [4.1 (s.d. 0.6, P = 0.73) and there was no floor/ceiling effect. CQRA-PREM-AU is a valid and reliable instrument to measure self-reported care experience in Australian rheumatology patients and may be interpreted as an average overall numerical score.

Psychosocial Evaluation of Adults with Primary Immunodeficiency

PurposePrimary immunodeficiency disorder (PID) is a heterogeneous group of diseases characterized by immune dysregulation and increased susceptibility to infections, with various cognitive, emotional, behavioral, and social effects on patients. This study aimed to evaluate loneliness, social adaptation, anxiety, and depression and to identify associated factors in adults with immunodeficiency.MethodsA cross-sectional study in Turkey (Feb-Aug 2022) obtained sociodemographic data from patient records. The Social Adaptation Self-Evaluation Scale (SASS), UCLA-Loneliness Scale (UCLA-LS), and Hospital Anxiety and Depression Scale (HADS) were administered in individual patient interviews. HADS-Anxiety (HADS-A) and HADS-Depression (HADS-D) scores were assessed using cut-offs of 10 and 7, respectively; SASS cut-offs for social imbalance and normalcy were < 25 and > 35, respectively.ResultsA total of 104 patients (60 women, 44 men) with a median age of 34 years (range: 18–89) were included in the study. Mean scores were SASS: 34.46 ± 8.11, UCLA-LS: 44.89 ± 12.66, HADS-A: 9.87 ± 4.77, and HADS-D: 9.12 ± 4.80. SASS score was negatively correlated with HADS-A, HADS-D, and UCLA-LS scores. There were positive correlations between UCLA-LS and HADS-A (r = -0.355, p < 0.01) and HADS-D (r = -0.614, p < 0.01) and between HADS-A and HADS-D (r = -0.454, p < 0.01). Low-income level was associated with higher HADS-A, HADS-D, and UCLA-LS scores and lower SASS score (p = 0.012, p = 0.041, p = 0.008, and p = 0.001, respectively).ConclusionAdults with PID are at risk for depression and experience high levels of loneliness. Social maladjustment and loneliness contribute to anxiety and depression, and loneliness is correlated with impaired social functioning. These findings emphasize the importance of biopsychosocial evaluation of individuals diagnosed with PID.

A92 THE CURRENT STATE OF PEDIATRIC TO ADULT TRANSITION OF CARE: A ROUND TABLE DISCUSSION WITH KEY STAKEHOLDER GROUPS

Abstract Background There is a severe paucity in available resources to facilitate a safe and effective pediatric to adult health care transition for patients with chronic disease. Aims This study aims to better understand the experiences of key stakeholder groups involved in pediatric to adult transition of care across various chronic disease specialties within a tertiary care urban environment. Methods A focus group was conducted on July 12th, 2018 at Women’s College Hospital with key stakeholder groups. Questions focused on the top issues related to pediatric to adult transition of care and an ideal transition model for their respective patient populations. The second part of this study included individual interviews with patients and carepartners. Focus group meetings and individual interviews were both audio-recorded and transcribed for qualitative thematic analysis. Results Seventeen pediatric and adult care physicians representing ten chronic disease specialties were represented. Seven patients and care partners were interviewed. Major focus group themes included: disproportionate access to resources between and within specialties (n=10), lack of mental health support in the adult setting (n=8), fragmentation of care due to multiple providers as a result of patients leaving for employment or education (n=6), patients feeling alienated due to decrease in allied health support or due to shorter appointment times (n=8), and difficulty retaining consistent care due to missed appointments as a result of inconsistent communications or change in location for education or employment (n=7). Ideal care models were suggested to include: centralized intake procedure to identify patients who may require extra support (n=9), education for scheduling administrators about second chances after a no-show (n=5), implementation of joint clinics with pediatric and adult care teams or back-and-forth clinic sessions to ensure bidirectional provider comfort before discharge to adult care system (n=4), and implementation of a dedicated transitions navigator or point of contact for patients (n=10). The individual patient and carepartner interviews emphasized the need for: centralized and comprehensive online resource (n=7), simple and clear educational content introducing the adult healthcare system (n=7), opportunities to meet and share information with other individuals in a similar position (n=3), and availability of a transitions navigator (n=4). Conclusions Current pediatric to adult transition of care resources are fragmented, allocated inefficiently, difficult to ascertain and often constrained to a specific condition or location. Future efforts should focus on improving the care transition process for high-risk patient populations by taking a comprehensive approach utilizing innovative, and multidisciplinary solutions. Funding Agencies None

Patients' Experiences of Dental Diagnostic Failures: A Qualitative Study Using Social Media.

Despite the many advancements made in patient safety over the past decade, combating diagnostic errors (DEs) remains a crucial, yet understudied initiative toward improvement. This study sought to understand the perception of dental patients who have experienced a dental diagnostic failure (DDF) and to identify patient-centered strategies to help reduce future occurrences of DDF. Through social media recruitment, we conducted a screening survey, initial assessment, and 67 individual patient interviews to capture the effects of misdiagnosis, missed diagnosis, or delayed diagnosis on patient lives. Audio recordings of patient interviews were transcribed, and a hybrid thematic analysis approach was used to capture details about 4 main domains of interest: the patient's DDF experience, contributing factors, impact, and strategies to mitigate future occurrences. Dental patients endured prolonged suffering, disease progression, unnecessary treatments, and the development of new symptoms as a result of experiencing DE. Poor provider communication, inadequate time with provider, and lack of patient self-advocacy and health literacy were among the top attributes patients believed contributed to the development of a DE. Patients suggested that improvements in provider chairside manners, more detailed patient diagnostic workups, and improving personal self-advocacy; along with enhanced reporting systems, could help mitigate future DE. This study demonstrates the valuable insight the patient perspective provides in understanding DEs, therefore aiding the development of strategies to help reduce the occurrences of future DDF events. Given the challenges patients expressed, there is a significant need to create an accessible reporting system that fosters constructive clinician learning.

A Qualitative Study Comparing the Patient and Provider Experience in an Academic Blood Disorder Center

Introduction: Health disparities have been reported in several areas of hematologic and oncologic care. The NCI reports African American males develop cancer 25% more frequently than White males, and they have 43% higher mortality compared to Non-Hispanic Whites in all cancers combined. Hispanic ethnicity is also disproportionately affected in cancer care, in part due to lack of health care access (J Oncol Pract. 2006). Within hematologic care, differences in care and outcomes have been reported in diseases including sickle cell disease (SCD). Patients with SCD experience health disparities, including lack of knowledge on treatment options and misconceptions on opioid addiction (Shapiro et al. 1997). Our goal was to gain firsthand patient accounts of experiences in access and quality of hematological care at the University of Colorado Anschutz Medical Center. Methods: The study aimed to obtain surveys from 40 patients with 20 patients from under-represented minorities (Black, Hispanic, Native American, or Asian) and 20 patients from non-minority groups. Patients aged 18 or older treated in the Division of Hematology at University of Colorado were eligible for the study. Providers from our Division also participated the study. The surveys assessed general beliefs, experiences, and biases in 7 questions (Figure 1). Responses were based on a Likert scale ranging from ‘never’ to ‘very often’. Patients could also participate in an optional interview to further describe their experiences. Enrollment will continue through September 2023. Results: Our interim analysis includes data from 15 patients, 4 non-Hispanic White, 3 Hispanic, and 8 non-Hispanic Black patients. 78 providers from our Division also participated in the survey. Non-Hispanic Black patients were more likely to respond that our healthcare system unfairly treats individuals based on race or ethnic backgrounds, and this was more likely to occur when a patient and healthcare provider were of a different race or ethnic background. This was not the case in the Hispanic patient cohort. Provider responses mirrored the responses from non-Hispanic Black patients, suggesting our providers are aware of disparities in healthcare. However, 78% of providers agreed they had implicit biases they could identify, and although 69% of them agreed theyfelt knowledgeable and informed about issues regarding race and ethnicity, and how these issues may manifest in a healthcare setting, 46% of providers noticed implicit or explicit biases in their colleagues related to race or ethnicity. Individual patient interviews gave further insight into areas where improvement can be made. Black patients, particularly those who volunteered their diagnosis of SCD, expressed there is a lack of knowledge in the treatment of SCD outside of specialized centers. Further, misconceptions about pain crises can lead to undertreatment. One subject stated “With sickle cell disease, sometimes we have a lot of pain even though it may not look like it”... “Because we live with pain every day, when we go to the ER it is because we are in excruciating pain ”. Other underrepresented minority subjects also discussed barriers to their healthcare. One subject stated “In 2016 when I came to the US, I was sick and I went to the Emergency and we were new in town” ... “we didn't have any insurance. I found myself with 20 thousand dollars in hospital bills”.... “I didn't know, and it was too expensive. And it impacted me negatively because I am afraid, being honest, if it wasn't for Medicaid I wouldn't come to the hospital, you wouldn't see me there”. Conclusions: Our results highlight there are differences between the experience of our Black patients compared to non-Black patients. Further, provider questionnaires also highlight discrepancies about how we identify and address biases. Results from this study highlight areas needing improvement within our Division, which will lead to interventions such as bias training for providers. Further, dissemination of information on misconceptions on SCD at our institution, and at the community settings is critical to improving patient care for this patient population. Identifying additional barriers to health care access such as financial needs and lack of insurance is also critical to closing gaps within our healthcare system.

Transitioning off methadone: A qualitative study exploring why patients discontinue methadone treatment for opioid use disorder

IntroductionPatients who discontinue methadone for opioid use disorder are at increased risk of overdose and death. We know little about how patients make the decision to stop treatment. This study explored reasons why patients discontinue methadone treatment. MethodsWe conducted 20 individual semi-structured patient interviews and two staff focus groups, each with five participants, at two opioid treatment programs in Baltimore, MD, in the United States from June 2021 to May 2022. Patient interviews and staff focus groups covered three domains: 1) reasons why patients may want to discontinue methadone; 2) perspectives about the ideal length of methadone treatment; and 3) changes that could improve retention. We used a modified grounded theory approach to code interviews, identify emergent themes, and develop a conceptual model. ResultsWe identified three themes related to patients' internal relationships to methadone: patients (1) viewed methadone as a bridge to opioid-free recovery, (2) believed that long-term methadone damages the body, and (3) felt that methadone increases craving for cocaine; and three themes related to their external relationships with opioid treatment programs and society at large: patients (4) viewed daily dosing as burdensome, (5) feared methadone inaccessibility could trigger relapse, and (6) experienced stigma from friends, family, and peers. Patients with internal reasons planned to stop as soon as possible and asked for education about perceived side effects and treatment for cocaine craving to promote retention. Patients with external reasons were willing to continue for longer and asked for adaptive take-home policies and reduced societal stigma around methadone. ConclusionsPatients want to discontinue methadone either because of their internal relationship to methadone and its real or perceived side effects, or because of their external experiences with opioid treatment programs and societal stigma of methadone. To improve retention, clinical and policy changes should consider responses to both of these categories of reasons.

Patient Assessment Chronic Illness Care (PACIC) and its associations with quality of life among Swiss patients with systemic sclerosis: a mixed methods study

BackgroundThe Chronic Care Model (CCM) is a longstanding and widely adopted model guiding chronic illness management. Little is known about how CCM elements are implemented in rare disease care or how patients’ care experiences relate to health-related quality of life (HRQoL). We engaged patients living with systemic sclerosis (SSc) to assess current care according to the CCM from the patient perspective and their HRQoL.MethodsWe employed an explanatory sequential mixed methods design. First, we conducted a cross-sectional quantitative survey (n = 101) using the Patient Assessment of Chronic Illness Care (PACIC) and Systemic Sclerosis Quality of Life (SScQoL) questionnaires. Next, we used data from individual patient interviews (n = 4) and one patient focus group (n = 4) to further explore care experiences of people living with SSc with a focus on the PACIC dimensions.ResultsThe mean overall PACIC score was 3.0/5.0 (95% CI 2.8–3.2, n = 100), indicating care was ‘never’ to ‘generally not’ aligned with the CCM. Lowest PACIC subscale scores related to ‘goal setting/tailoring’ (mean = 2.5, 95% CI 2.2–2.7) and ‘problem solving/contextual counselling’ (mean = 2.9, 95% CI 2.7–3.2). No significant correlations were identified between the mean PACIC and SScQoL scores. Interviews revealed patients frequently encounter major shortcomings in care including ‘experiencing organized care with limited participation’, ‘not knowing which strategies are effective or harmful’ and ‘feeling left alone with disease and psychosocial consequences’. Patients often responded to challenges by ‘dealing with the illness in tailored measure’, ‘taking over complex coordination of care’ and ‘relying on an accessible and trustworthy team’.ConclusionsThe low PACIC mean overall score is comparable to findings in patients with common chronic diseases. Key elements of the CCM have yet to be systematically implemented in Swiss SSc management. Identified gaps in care related to lack of shared decision-making, goal-setting and individual counselling-aspects that are essential for supporting patient self-management skills. Furthermore, there appears to be a lack of complex care coordination tailored to individual patient needs.

User-Centered Design of a Clinical Tool for Shared Decision-making About Diet in Primary Care.

Health information technology is a leading cause of clinician burnout and career dissatisfaction, often because it is poorly designed by nonclinicians who have limited knowledge of clinicians' information needs and health care workflow. Describe how we engaged primary care clinicians and their patients in an iterative design process for a software application to enhance clinician-patient diet discussions. Descriptive study of the steps followed when involving clinicians and their at-risk patients in the design of the content, layout, and flow of an application for collaborative dietary goal setting. This began with individual clinician and patient interviews to detail the desired informational content of the screens displayed followed by iterative reviews of intermediate and final versions of the program and its outputs. Primary care clinicians practicing in an urban federally qualified health center and two academic primary care clinics, and their patients who were overweight or obese with diet-sensitive conditions. Descriptions of the content, format, and flow of information from pre-visit dietary history to the display of evidence-based, guideline-driven suggested goals to final display of dietary goals selected, with information on how the patient might reach them and patients' confidence in achieving them. Through three iterations of design and review, there was substantial evolution of the program's content, format, and flow of information. This involved "tuning" of the information desired: from too little, to too much, to the right amount displayed that both clinicians and patients believed would facilitate shared dietary goal setting. Clinicians' well-founded criticisms of the design of health information technology can be mitigated by involving them and their patients in the design of such tools that clinicians may find useful, and use, in their everyday medical practice.

Danish Feasibility Study of a New Innovation for Screening and Brief Intervention for Alcohol Problems in Primary Care: The 15-method

IntroductionThe 15-method: a new brief intervention tool for alcohol problems in primary care, has shown promising results in Sweden for mild to moderate alcohol use disorders.ObjectivesTo evaluate the 15-method’s usability, organizational integration, and overall implementation feasibility in Danish general practice (GP) in preparation for a large-scale evaluation of the method’s effectiveness in identifying and treating alcohol problems in GP.MethodsIn the Central and Southern Region of Denmark, five general practices participated: seven doctors and eight nurses. Participants received half a day of training in the 15-method. Testing of implementation strategies and overall applicability ran for two months. A focus group interview, two individual interviews with the participating doctors, and five individual patient interviews concluded the study phase.Resultsindicate that implementation of the 15-method is feasible in Danish general practice. The healthcare professionals and patients were optimistic about the method and its possibilities. The method was considered a new patient-centred treatment offer and provided structure to a challenging topic. An interdisciplinary approach was much welcomed. Results indicate that the method is ready for large-scale assessment.ConclusionsImplementation of the 15-method is considered feasible in Danish general practice, and large-scale evaluation is currently being planned. The results from the present feasibility study, and an overview of the large-scale evaluation, will be presented at the conference.DisclosureNo significant relationships.

Exercise-Based Real-time Telerehabilitation for Older Adult Patients Recently Discharged After Transcatheter Aortic Valve Implantation: Mixed Methods Feasibility Study

BackgroundThe use of telehealth technology to improve functional recovery following transcatheter aortic valve implantation (TAVI) has not been investigated.ObjectiveIn this study, we aimed to examine the feasibility of exercise-based cardiac telerehabilitation after TAVI.MethodsThis was a single-center, prospective, nonrandomized study using a mixed methods approach. Data collection included testing, researchers’ observations, logbooks, and individual patient interviews, which were analyzed using a content analysis approach. The intervention lasted 3 weeks and consisted of home-based web-based exercise training, an activity tracker, a TAVI information website, and 1 web-based session with a nurse.ResultsOf the initially included 13 patients, 5 (40%) completed the study and were interviewed; the median age was 82 (range 74-84) years, and the sample comprised 3 men and 2 women. Easy access to supervised exercise training at home with real-time feedback and use of the activity tracker to count daily steps were emphasized by the patients who completed the intervention. Reasons for patients not completing the program included poor data coverage, participants’ limited information technology skills, and a lack of functionality in the systems used. No adverse events were reported.ConclusionsExercise-based telerehabilitation for older people after TAVI, in the population as included in this study, and delivered as a web-based intervention, does not seem feasible, as 60% (8/13) of patients did not complete the study. Those completing the intervention highly appreciated the real-time feedback during the web-based training sessions. Future studies should address aspects that support retention rates and enhance patients’ information technology skills.

Blended Treatment for Alcohol Use Disorder (Blend-A): Explorative Mixed Methods Pilot and Feasibility Study

BackgroundIn Denmark, approximately 150,000 people have alcohol use disorder (AUD). However, only approximately 10% seek AUD treatment, preferably outside conventional health care settings and opening hours. The AUD treatment area experiences low adherence to treatment, as well as high numbers of no-show and premature dropouts.ObjectiveThe purpose of the Blend-A (Blended Treatment for Alcohol Use Disorder) feasibility and pilot study was to describe the process of translating and adapting the Dutch treatment protocol into Danish and Danish culture with a high amount of user involvement and to report how patients and therapists perceived the adapted version, when trying it out.MethodsThe settings were 3 Danish public municipal outpatient alcohol clinics. Study participants were patients and therapists from the 3 settings. Data consisted of survey data from the System Usability Scale, individual patient interviews, and therapist group interviews. Statistical analyses were conducted using the Stata software and Excel. Qualitative analysis was conducted using a theoretical thematic analysis.ResultsThe usability of the treatment platform was rated above average. The patients chose to use the blended treatment format because it ensured anonymity and had a flexible design. Platform use formed the basis of face-to-face sessions. The use of the self-determined platform resulted in a more thorough process. Patient involvement qualified development of a feasible system. Managerial support for time use was essential. Guidance from an experienced peer was useful.ConclusionsThis study indicates that, during the processes of translating, adapting, and implementing blended, guided, internet-based, and face-to-face AUD treatment, it is relevant to focus on patient involvement, managerial support, and guidance from experienced peers. Owing to the discrete and flexible design of the blended offer, it appears that it may reach patient groups who would not otherwise have sought treatment. Therefore, blended treatment may increase access to treatment and contribute to reaching people affected by excessive alcohol use, who would not otherwise have sought treatment. In addition, it seems that the blended offer may enhance the participants’ perceived satisfaction and the effect of the treatment course. Thus, it appears that Blend-A may be able to contribute to existing treatment offers. Such findings highlight the need to determine the actual effect of the Blend-A offer; therefore, an effectiveness study with a controlled design is warranted.

Development and Content Validity of the Bilateral Vestibulopathy Questionnaire

BackgroundTo date, the burden and severity of the full spectrum of bilateral vestibulopathy (BVP) symptoms has not yet been measured in a standardized manner. Since therapeutic interventions aiming to improve BVP symptoms are emerging, the need for a new standardized assessment tool that encompasses the specific aspects of BVP arises. Therefore, the aim of this study was to develop a multi-item Patient Reported Outcome Measure (PROM) that captures the clinically important symptoms of BVP and assesses its impact on daily life.MethodsThe development of the Bilateral Vestibulopathy Questionnaire (BVQ) consisted of two phases: (I) initial item generation and (II) face and content validity testing. Items were derived from a literature review and individual semi-structured interviews focusing on the full spectrum of reported BVP symptoms (I). Subsequently (IIa), individual patient interviews were conducted using “thinking aloud” and concurrent verbal probing techniques to assess the comprehensibility of the instructions, questions and response options, and the relevance, missing domains, or missing items. Interviews continued until saturation of input was reached. Finally, international experts with experience in the field of the physical, emotional, and cognitive symptoms of BVP participated in an online focus group to assess the relevance and comprehensiveness of the BVQ (IIb).ResultsThe BVQ consisted of two sections. The first section included 50 items scored on a six-point Likert scale arranged into seven constructs (i.e., imbalance, oscillopsia, other physical symptoms, cognitive symptoms, emotional symptoms, limitations and behavioral changes and social life). The second section consisted of four items, scored on a visual analog scale from 0 to 100, to inquire about limitations in daily life, perceived health and expectations regarding future recovery. Interviews with BVP patients [n = 8, 50% female, mean age 56 years (range 24–88 years)] and the expert meeting confirmed face and content validity of the developed BVQ.ConclusionThe BVQ, which was developed to assess the spectrum of BVP symptoms and its impact on daily life, proved to have good face and content validity. It can be used to characterize current self-reported symptoms and disability and to evaluate symptom burden before and after therapeutic interventions in future research and clinical practice.

Danish feasibility study of a new innovation for treating alcohol disorders in primary care: the 15-method

BackgroundThe 15-method: a new brief intervention tool for alcohol problems in primary care has shown promising results in Sweden for mild to moderate alcohol use disorders. The present study evaluated the 15-method’s usability, organizational integration, and overall implementation feasibility in Danish general practice in preparation for a large-scale evaluation of the method’s effectiveness in identifying and treating alcohol problems in general practice.MethodsFive general practices in the Central and Southern Region of Denmark participated: seven general practitioners (GPs), eight nurses. Participants received a half day of training in the 15-method. Testing of implementation strategies and overall applicability ran for 2 months. A focus group interview and two individual interviews with participating GPs along with five individual patient interviews concluded the study period.ResultsResults indicate that implementation of the 15-method is feasible in Danish general practice. The healthcare professionals and patients were positive about the method and its possibilities. The method was considered a new patient centered treatment offer and provided structure to a challenging topic. An interdisciplinary approach was much welcomed. Results indicate that the method is ready for large scale evaluation.ConclusionsImplementation of the 15-method is considered feasible in Danish general practice and large-scale evaluation is currently being planned.

Laboratory monitoring to reduce adverse drug-related events: a mixed methods study.

BACKGROUND: Therapy with angiotensinconverting enzyme inhibitors (ACEIs) and angiotensin receptor blockers (ARBs) requires laboratory monitoring to avoid hyperkalemia and acute kidney failure. OBJECTIVE: To assess the frequency of recommended annual serum potassium and creatinine monitoring and determine potential factors associated with care gaps among adults dispensed an ACEI or ARB. METHODS: This mixed-methods study integrated findings from a retrospective cohort study and individual patient interviews. Adults aged 21 years and over within Kaiser Permanente Southern California with at least 180 treatment days of an ACEI and/or ARB in 2015 were included. Patients invited for qualitative interviews included those who did and did not complete the recommended laboratory tests. We assessed the proportion of patients completing both recommended laboratory tests, factors associated with not receiving laboratory monitoring, and patients' insights into barriers and facilitators of recommended monitoring. RESULTS: Of 437,544 patients who received an ACEI or ARB, 9.0% did not receive both a serum potassium and creatinine laboratory test during treatment (defined as a care gap). Lower risk of a care gap was observed for patients with increasing age (rate ratio [RR] per 10-year increase = 0.78, 95% CI = 0.77-0.79); diabetes mellitus (RR = 0.62, 95% CI = 0.60-0.64); hypertension (RR = 0.71, 95% CI = 0.71-0.74); Charlson Comorbidity Index score of at least 2 (RR = 0.62, 95% CI = 0.60-0.64); those who changed medication classes (RR = 0.53, 95% CI = 0.51-0.56); and patients with a cardiologist (RR = 0.81, 95% CI = 0.73-0.90) or nephrologist (RR = 0.60, 95% CI = 0.52-0.69) as their prescribing provider. Twenty-five patients completed the qualitative interviews. Patients often lacked knowledge about the need for laboratory monitoring, cited logistical barriers to accessing the laboratory, and deemed the reminders they received through an outpatient safety program as a facilitator to completing tests. CONCLUSIONS: Given the large patient population on ACEI and ARB medications, monitoring and support strategies such as electronic clinical surveillance could be important in addressing care gaps and potentially reducing adverse drug effects. DISCLOSURES: This project was supported by grant number R01HS024437 from the Agency for Healthcare Research and Quality. The funder had no role in the design of the study; collection, analyses, or interpretation of the data, or decision to submit this manuscript for publication. Harrison, Reynolds, Hahn, Munoz-Plaza, Yi, Fischer, Luong, Sim, Brettler, Handler, and Mittman are employees of the Southern California Permanente Medical Group. Danworth was employed by the Southern California Permanente Medical Group at the time of this study. Singh was partially supported by the Houston VA HSR&D Center for Innovations in Quality, Effectiveness and Safety (CIN13-413). Reynolds reports grants from Novartis, Amgen Inc., and Vital Strategies, Resolve to Save Lives, unrelated to this work. Yi reports grants from Novartis unrelated to this work. Kanter has nothing to disclose.

Systemic barriers to care coordination for marginalized and vulnerable populations

ABSTRACT Care coordination can improve patient outcomes, increase continuity of care, and reduce healthcare utilization. This study explores the effectiveness and limitations of care coordination as a strategy for meeting vulnerable patients’ needs. The study team conducted a qualitative, multi-site, collective case study of four sites providing care coordination for vulnerable and marginalized populations. Data were gathered via individual patient interviews (n = 69) and staff focus groups (82 participants) and analyzed using a matrix template to code data and identify common themes. Addressing patients’ needs required coordination across behavioral, medical, and social service providers. This was most effective when it included social needs and built on trusting relationships between patients and staff. However, sites faced shared challenges from systemic barriers that limited their effectiveness. For vulnerable and marginalized populations, evidence-based care coordination can only address some needs, and benefits are often undermined by deeply entrenched structural deficits. Future care coordination programs must include an assessment of structural barriers and incorporate concurrent efforts to address them.

A qualitative study of COVID-19 related reasons for delayed presentation of patients with chest pain during the COVID-19 pandemic.

IntroductionIn previous pandemics such as the Ebola virus outbreak in West Africa, it has been observed that patients with non-pandemic related complaints, delay their presentation to hospital. Similarly, delayed presentation of patients with chest pain during the COVID-19 pandemic has been documented. This qualitative study identified the COVID-19 related reasons which lead to this delay.MethodsA qualitative study based on 10 individual patient interviews. Half of these were conducted at a public hospital emergency centre (EC) and the other half at a private EC.ResultsA variety of psychosocial factors were identified as themes for delayed presentation. Interestingly, the fear of contracting COVID-19 at the hospital was not found to be an important theme in our study. Rather, confusion around hospital protocols during the pandemic was identified as a recurrent theme.DiscussionThis study found that confusion about COVID-19 hospital protocols was the major pandemic related delaying factor. A number of themes unrelated to COVID-19 were also identified.

Outcomes in breast cancer from the patient perspective: Development of an innovative, user-centered platform for collection and reporting of patient-reported data.

188 Background: Transition towards a patient-centered healthcare model has been recognized as an important step towards improving the quality and coordination of breast cancer care. Although evidence suggests that patient self-reporting of quality of life improves clinical care, there are significant barriers to successful collection and use of patient-reported data (PRD) including a lack of a technology designed to fully engage patients and providers, limited electronic health record (EHR) integration, and suboptimal clinical implementation strategies. To address this, our team developed imPROVE, an innovative and customizable patient-reported data (PRD) collection platform consisting of a patient web-application and a clinician portal. Methods: This study was performed as a quality improvement initiative at Dana-Farber Cancer Institute (DFCI) and Brigham and Women’s Hospital (BWH). Multiple perspectives were sought from key stakeholders to ensure that the content and design of the platform target the needs of the end-users and garners the latest in technological advances. Development and testing were performed using best practices in user-centered design and agile development, and iterative programming sprints followed by stakeholder feedback and testing. Content was evaluated using probing questions about relevance, comprehensiveness, and clarity. Design was assessed through feedback about the look and feel of the platform and its usability. Results: A multidisciplinary team of 28 stakeholders in the field of breast cancer care, patient-reported outcomes research and value-based healthcare was assembled. Recurring group meetings (n = 8), individual patient interviews (n = 23), and two focus groups with the DF/HCC Breast Cancer Advocacy Group, were conducted. The resultant application is a hybrid mHealth application that is supported by iOS and Android and is comprised of five screens (myCare, myStory, myResources, myCommunity, myNotes). Patients are provided written and graphical displays of their PRD as well as tailored resources that are customized depending on their type and stage of treatment. The clinician portal is comprised of an overview table listing all patients enrolled for each individual clinician, as well as individual patient profiles demonstrating demographic, clinical, and outcomes data. Conclusions: imPROVE has the potential to create a paradigm shift in the delivery of care for breast cancer patients. Next steps will include implementation of imPROVE within the breast oncology and plastic surgery services at DFCI and BWH.

The nurse-patient interaction during rehabilitation consultations in patients surgically treated for head and neck cancer– a qualitative study

Patients treated surgically for head and neck cancer may experience detrimental early and late effects of their treatment and are in need of rehabilitation post treatment to alleviate symptoms and effects. This study aimed to explore nurse-patient interactions during rehabilitation consultations assessing needs of patients in order to understand how nurses and patients experienced the consultation, the extent to which patients experienced being involved in the needs assessment and how patients experienced the information delivered.Findings in this study drew on three data sources: 15 observations of nurse-patient interactions during rehabilitation consultations; 15 individual patient interviews and a focus group interview with nurses. Observations and individual patient interviews took place at three different time points during the patient trajectory. The method and analysis applied Interpretive Description and Systematic Text Condensation. Analysis was performed across all three data sources and three time points.Four interrelated themes were identified, showing that conducting rehabilitation nursing consultations and actively involving patients is a complex process. The themes revealed the complexity: expectations for nurse-patient interaction differ; challenges of building rapport; barriers to adequately identifying rehabilitation needs; and factors inhibiting communication of advice and recommendations. Uncovering emotional needs were especially challenging. Patient further experienced an information overload, especially just prior to discharge.Nurse-patient interaction in the rehabilitation consultation is complex and involves many different interrelated aspects that require the nurse to have the necessary interpersonal and professional skills to support the patient to enhance their involvement in the encounter.

Development of patient-reported outcomes item set to evaluate acute treatment toxicity to pelvic online magnetic resonance-guided radiotherapy

BackgroundA new technology in cancer treatment, the MR-linac, provides online magnetic resonance-guided radiotherapy (MRgRT) that combines real-time visualization of the tumor and surrounding tissue with radiation therapy to deliver treatment more accurately. Online MRgRT makes it possible to minimize treatment volume, potentially reducing acute treatment toxicity. Patient-reported outcomes (PRO) add the patient perspective to evaluating treatment toxicity related to new technology. The objective of this mixed-methods study was to develop and explore the content validity of a set of PRO items to evaluate acute pelvic toxicity to radiotherapy including online MRgRT.MethodsA literature review and chart audit were conducted to identify symptomatic adverse events (AEs) to be selected from the Patient-Reported Outcomes Version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) library and European Organisation for Research and Treatment of Cancer (EORTC) item library. To validate the content, the item set was applied in a prospective pilot cohort of patients referred for primary pelvic RT with curative intent. Patients reported symptoms weekly during RT (4–8 weeks) and the subsequent 4 weeks. Follow-up reports were collected at 8, 12, and 24 weeks after RT. To ensure symptom coverage clinician-reported toxicity and individual patient interviews were conducted. The symptomatic AEs were included in the final item set if ≥20% of patients reported them.ResultsEighteen acute symptomatic AEs were selected for the initial item set. Forty patients (32 prostate cancer, 8 cervical cancer) were included in the pilot study. Patients with prostate cancer and those with cervical cancer both reported all 18 acute AEs. However, vomiting was not reported by > 20% of patients thus excluded from the item set. Adding a few diagnosis-specific AEs to the final item set was required for both prostate and cervical cancer patients.ConclusionsA PRO item set for patients with pelvic cancer treated with radiotherapy with a curative intent was developed and content validity explored. In the pilot study, the item set captured the most common acute symptomatic AEs for patients with prostate and cervical cancer related to pelvic RT including online MRgRT. Further validation of the content in broader disease sites would be needed in future studies.

Future-proofing the primary care workforce: A qualitative study of home visits by emergency care practitioners in the UK

Background Broadening the skill-mix in general practice is advocated to build resilience into the primary care workforce. However, there is little understanding of how extended-scope practitioners from different disciplines, such as paramedicine and nursing, embed into roles traditionally ascribed to general practitioners (GPs). Objectives This study sought to explore patients' and professionals' experiences of a primary care home visiting service delivered by emergency care practitioners (ECPs), in place of GPs; to determine positive impacts/unintended consequences and establish whether interdisciplinary working was achieved. Methods Three practices in England piloted an ECP (extended-scope practitioners with a paramedic or nursing background) home visiting service (November 2018–March 2019). Following the pilot, focus groups were conducted with each of the three primary healthcare teams (14 participants, including eight GPs), and one with ECPs (five participants) and nine individual patient interviews. Data were analysed using a modified framework approach. Results The impact of ECP home visiting on GP workload and patient care was perceived as positive by patients, GPs and ECPs. Initial preconceptions of GPs and patients about the ECP role and expertise, and reservations about the appropriacy of ECPs for home visiting, were perceived to have been overcome by the expertise and interpersonal skills of ECPs. Fostering a culture of collaboration between ECPs and GPs was instrumental to remodelling professional boundaries at the practice level. Conclusion Broadening the skill-mix to incorporate extended-scope practitioners such as ECPs, to deliver primary care home visiting, presents an opportunity to increase resilience in the general practice workforce.