Patient Focus Groups Research Articles

Health Care Experiences During Pregnancy and Parenting with an Opioid Use Disorder.

The purpose of this study was to describe the experience of individuals with opioid use disorder (OUD) during the perinatal period. We convened focus groups of patients with OUD who had been pregnant and were parenting. Participants who were 18 and older, English-speaking, self-identified as pregnant or parenting, and actively using opioids or in recovery from OUD were recruited using snowball and convenience sampling in resident treatment facilities and outpatient settings. Data were recorded, transcribed, and analyzed for themes. Twenty-four participants were recruited, 10 of whom were actively receiving residential recovery services. Most participants had been pregnant from 4 weeks to 2 years prior to our focus group session; none reported being currently pregnant. Nineteen participants had custody of some, or all, of their children. They identified four key themes related to their care: (1) disrespectful care, (2) fear of accessing services, (3) inconsistencies in care received, and (4) limited health and social services. Participants reported overall negative interactions across different health care settings and lack of social resources to promote ongoing recovery and successful parenting. Nurses should be aware of the lasting impressions they have on their patients. Recognition of their own biases, person-first language, and partnership building skills with patients can help attenuate OUD stigma, promote positive nurse-patient relationships, and support new parents in recovery and infant bonding.

Increasing the uptake in a general practice prostate cancer screening programme

BackgroundProstate cancer (PC) is the second most common cause of cancer deaths among males worldwide. Prostate-specific antigen (PSA) is a predictive indicator of prostate pathology. Men with elevated PSA levels...

Development of a core outcome set for lateral elbow tendinopathy (COS-LET) using best available evidence and an international consensus process

ObjectivesTo develop a core outcome set for lateral elbow tendinopathy (COS-LET) and to provide guidance for outcome evaluation in future studies.MethodsWe implemented a multi-stage mixed-methods design combining two systematic reviews,...

PhysioNow – A digital musculoskeletal patient self-assessment application, transforming access to MSK physiotherapy services

Keywords: Digital; Transformation; Quality Purpose: PhysioNow is a digital self-assessment application that was collaboratively developed by Connect Health and EQL. The main aims of introducing this technology were to:(1)Improve patient access pathways(2)Utilise digital triage to stratify patients, allowing urgent clinical conditions to be picked up rapidly and directed to appropriate care(3)Work towards recommendations of the TOPOL report and the NHS five-year forward view around digital healthcare(4)Reduce administrative processing time(5)Provide information to improve the quality and focus of clinical consultations Methods: PhysioNow was co-produced by digital and clinical colleagues as informed by an EIA through an innovative service improvement programme. An AGILE approach was adopted within implementation, working in sprints to ensure all components were met. Process design was applied to use robotic process automation (RPA) in both registration of patients and handling of patients in the clinical system following PhysioNow completion, additionally the linking of our data warehouse to the registration portal and web application via an Application Programming Interface (API) allowed seamless patient transition and information flow. Time was invested developing the clinical decision tree algorithms to ensure patients were asked appropriate questions and stratified safely, in line with normal volumes of red flags/urgent cases. Decision tree changes involved clinician feedback and clinical audit of all patients’ outcomes to continually improve the decision tree. Patient focus groups were employed to look at specific questions and all patients that used PhysioNow were involved in service user feedback. Results: Between July 2020 and the 14th of April 2021 PhysioNow was transitioned in a phased approach to 15 NHS physiotherapy services. To date, 22,422 patients were eligible to use PhysioNow and 96% were offered the opportunity to complete it. 15,366 patients have subsequently completed, with an uptake of 73%. 11,219 patients have been stratified to routine care, 3393 patients were stratified to an urgent physiotherapy assessment, 487 patients were advised to seek advice of NHS 111. Benefits achieved are an accessible platform for patients available 24/7; patient access and improved patient journey, clinicians effectively using PhysioNow outputs to target and inform clinical assessment; improved waiting times; reduction in volume of admin registrations via RPA has led to financial savings. Conclusion(s): This programme of work has enabled Connect Health to deliver a safe, effective, cost neutral solution to stratification of patients referred to Community MSK Physiotherapy services. We have demonstrated high levels of patient uptake by adopting an AGILE delivery cycle and identified barriers to clinical effectiveness and user accessibility/digital literacy via Continuous Improvement. Plans include further stratification of clinical conditions, enabling direct referral from PhysioNow into a supported self-management environment along with using AI and machine learning, to enhance the decision tree and pathways. Impact: This project has been implemented into routine practice across Connect Health, providing patients with a new accessible way of accessing MSK physiotherapy services. PhysioNow has been trialled with Welsh Health Boards to support Covid Recovery successful and demonstrates enhanced patient care pathways, clinician interactions and effectively detects clinically urgent conditions that needed urgent care. Funding acknowledgements: This work was funded by Connect Health and EQL as the Healthcare provider and the technology develop respectively.

Patient Perspectives on the Development of a Novel Mobile Health (mHealth) Application for Dietary Supplement Tracking and Reconciliation-A Qualitative Focus Group Study.

BackgroundMore than 170 million adults use dietary supplements (DS) in the United States, which can have both benefit and harm to patient health. DS use is often poorly documented in the medical record and can pose health risks if not properly communicated with providers. Reasons for poor DS documentation include low disclosure rates, time constraints of clinical encounters, and providers’ failure to inquire about DS use. This study was conducted to assess patients’ views on the facilitators and barriers to using a mobile health (mHealth) application (app) to collect and share DS information with their healthcare providers.MethodsUtilizing a theory-based conceptual model, we conducted 7 patient focus groups (FGs) to assess opinions on DS safety, provider communication, comfort with technology use, and our proposed mHealth app. Participants were recruited from the general public and through patient advisory groups. Patient views will inform the creation of an mHealth app to improve DS patient-provider communication and tracking and reconciliation in the electronic medical record (EMR).ResultsOverall, participants believe their DS information is inaccurately represented in the EMR, leading to safety concerns and negatively impacting overall quality of care. Participants desired an app designed with (1) Health Insurance Portability and Accountability Act (HIPAA) compliance; (2) ease of use for a variety of technical efficacy levels; (3) access to reliable DS information, including a DS-drug interaction checker; and (4) integration with the EMR.ConclusionAn app to simplify and improve DS entry and reconciliation was of interest to patients, as long as it maintained health autonomy and privacy and possessed key valuable features.

Educational Resources and Self-Management Support to Engage Patients in Advance Care Planning: An Interpretation of Current Practice in the US.

Educational resources and decision aids help patients, their care partners and health care providers prepare for and confidently engage in Advance Care Planning (ACP). Incorporating ACP resources as part of a self-management approach may lead to fuller engagement with ACP beyond identifying a surrogate decision-maker, towards supporting a person to identify their values and goals and to communicate them with their care partners and health care providers. To examine the use of educational resources and decision aids to support self-management of ACP in 11 health systems across the US. This study was a qualitative interview study examining barriers and facilitators to ACP. Guided by interpretative description and the chronic care model, we sought to describe how health care stakeholders (clinicians and administrators) and patients use ACP resources to support engagement with ACP. 274 health care stakeholders were interviewed, and 7 patient focus groups were conducted across 11 health systems. The majority of participants reported using resources to support completion of preference documentation, with fewer participants using resources that promote more engagement in ACP. ACP resources were reported as valuable in preparing for and complementing a complex, interpersonal, and interprofessional process. Barriers to using resources included a lack of a defined workflow and time. Our data suggest that ACP resources that promote engagement are valued but under-utilized in practice. The use of ACP resources with an inter-professional team and a self-management approach is a promising strategy to mitigate the barriers of ACP implementation while improving engagement in ACP.

P415 Improving food-related quality of life in Inflammatory Bowel Disease with a novel web-based intervention: a randomised controlled feasibility trial

Abstract Background Food-related quality of life (FR-QoL) refers to the psychosocial aspects and pleasure derived from food, eating and drinking. Impaired FR-QoL is prevalent in inflammatory bowel disease (IBD) and is associated with reduced intakes of fibre and certain micronutrients. Patient and health professional focus groups identified the need for web-based support and education on food in IBD, which was subsequently developed through experience-based co-design. The aim of this study was to establish the feasibility of a randomised controlled trial (RCT) investigating the effectiveness of the web-based intervention compared to usual care on FR-QoL in people with newly diagnosed IBD. Methods A randomised controlled feasibility trial was conducted in adults with Crohn’s disease or ulcerative colitis diagnosed in the preceding, 12 months. Patients with active and inactive IBD experiencing impaired FR-QoL (≤90 scored on the validated FR-QoL-29 questionnaire) were recruited. Participants were delivered usual care by their IBD team and were also randomised to either access to the web-based intervention (containing information and patient and clinician videos on various IBD-specific food and nutrition considerations) or no access to the website for, 12 weeks. Questionnaires were completed at baseline and end of trial to assess FR-QoL (FR-QoL-29), health-related quality of life (UK IBDQ), IBD distress (IBD Distress Scale) and anxiety and depression (HADS). Google Analytics was used to investigate usage of the web-based intervention. Results In total, 50 participants (ITT population) were recruited (81 screened), 30 randomised to the web-based intervention and, 20 to usual care, with, 48 completing the trial (PP population). In the ITT analysis, a greater increase in FR-QoL was observed in the web-based intervention (+11.7 SD, 18.2) than usual care group (+1.4 SD, 20.4, P=0.057), whilst IBD distress reduced in the web-based intervention (-6.8 SD, 26.6) and increased in the usual care group (+8.3 SD, 25.5, P=0.052). Participants in the web-based intervention group logged into the website an average of, 4.2 (SD, 2.9) times, and spent an average of, 13 minutes, 41 seconds (SD, 15 minutes, 1 second) on the website per visit. The most frequently accessed content covered dietary management of specific gut symptoms (accessed by, 52% of participants). In qualitative interviews the participants reported the intervention to be clear, user friendly, easy to navigate, and a good source of educational information. Conclusion This feasibility study demonstrates that a RCT of a web-based intervention is feasible and potentially effective in improving FR-QoL in IBD. An adequately powered RCT investigating the effectiveness of this intervention in IBD is feasible and now warranted.

Helping Patients Communicate With Oncologists When Cancer Treatment Resistance Occurs to Develop, Test, and Implement a Patient Communication Aid: Sequential Collaborative Mixed Methods Study.

BackgroundMost cancer-related deaths result from disseminated diseases that develop resistance to anticancer treatments. Inappropriate communication in this challenging situation may result in unmet patient information and support needs. Patient communication aids such as question prompt lists (QPLs) may help.ObjectiveThis study aims to develop and pilot-test a specific QPL in the following two contrasting clinical contexts in France after cancer resistance has developed: triple-negative and luminal B metastatic breast cancer (MBC) and metastatic uveal melanoma (MUM).MethodsA sequential study design with a mixed methods collaborative approach will be applied. The first step aims to build a specific QPL. Step 1a will explore oncologist-patient communication issues from oncology professionals’ interviews (n=20 approximately). Step 1b will appraise information and support needs experienced by patients with MBC or MUM both quantitatively (n=80) and qualitatively (n=40 approximately). These data will be used to develop and pilot-test a QPL specific to patients with cancer experiencing initial or acquired resistance to treatment. We expect to obtain a core QPL that comprises questions and concerns commonly expressed by patients with resistant cancer and is complemented by specific issues for either MBC or MUM cancer sites. In step 1c, 2 focus groups of patients with any type of metastatic cancer (n=4) and health care professionals (n=4) will be conducted to revise the content of a preliminary QPL and elaborate an acceptable and feasible clinical implementation. In step 1d, the content of the QPL version 1 and implementation guidance will be validated using a Delphi process. Step 2 will pilot-test the QPL version 1 in real practice with patients with MBC or MUM (n=80). Clinical utility will be assessed by comparing responses to questionnaires administered in step 1b (QPL-naive historical control group) and step 2 (QPL intervention group).ResultsThis study received grants in March and December 2019 and was approved by the French national ethics committee in July 2019. As of October 2021, interviews with oncology professionals have been conducted and analyzed (N=26 to reach saturation), and 39 and 27 patients with MBC and MUM, respectively, have been recruited.ConclusionsA clinically and culturally tailored QPL is expected to facilitate patients’ participation in consultations, improve oncologists’ responses to patients’ information and support needs, and thus foster patients’ psychological adjustment to the diagnosis and follow-up of cancer resistance to treatment.Trial RegistrationClinicalTrials.gov NCT04118062; http://clinicaltrials.gov/ct2/show/NCT04118062International Registered Report Identifier (IRRID)DERR1-10.2196/26414

Élaboration d’un programme d’éducation thérapeutique dédié aux patients atteints d’un cancer de la prostate sous hormonothérapie de nouvelle génération

New generation hormone therapies (NGHT) is the gold standard treatment for metastatic prostate cancers and/or castration-resistant tumors. Four molecules have been approved: enzalutamide, abiraterone acetate, apalutamide and darolutamide. These treatments are oral therapies taken on a daily basis, which raise issues of adherence to treatment, adverse effects and drug interactions. Therapeutic educational programs for patients represent an emerging care activity that allows patients to acquire skills to better live with their disease and treatment. As of today, no such specific program to new generation hormone therapy in prostate cancer has been developed in France, which was the goal of our current study. This was conducted in three steps: i) identification of patients' educational needs through an exchange with a focus group of patients, ii) gathering of expert opinions on useful information to be given to patients on NGHT via a questionnaire submitted to GETUG members and iii) implementation of the program per se. Qualitative analysis of exchanges with the focus group of patients led to the identification of 7 meaning categories. Expert opinions regarding useful information to deliver to patients identified 13 key items. Based on these preliminary data concerning patients' educational needs, we set up the first french program dedicated to metastatic prostate cancer patients undergoing NGHT that included three therapeutic education workshops: "Experience of the disease", "Management of the treatment" and "Physical activity and diet".

Linguistic and cultural adaptation of the Russian version of general practitioner assessment of cognition questionnaire ― GPCOG in elderly and senile patients at the primary care level

Russian version of the General Practitioner's Assessment of Cognition (GPCOG) questionnaire-test was adapted in accordance with modern international recommendations, including the procedure of its consecutive translations, testing of the Russian version of the questionnaire as part of interviewing geriatric patients and their relatives, as well as expert evaluation of the Russian version by specialists and decentering. The testing procedure involved 8 geriatric patients (age 61-77 years, men/women - 3/5), as well as their relatives/other close persons; 8 specialists participated in the questionnaire (age 24-52 years, all women). Based on the data of interviewing patients and their relatives, an acceptable indicator of the external validity of the Russian version of the tool was established, according to the results of the questionnaire of specialists, its substantive validity was confirmed. The results of testing the GPCOG questionnaire-test in the focus group of patients and the questionnaire of specialists made it possible to make changes for two tasks at the decentering stage, which made it possible to improve the equivalence of the instrument to its original version, taking into account the ethno-linguistic characteristics of the domestic population. In the process of linguistic and cultural adaptation, the final version of the GPCOG questionnaire-test In Russian was formed, equivalent to the original and corresponding to the ethnolinguistic features of the population. The use of GPCOG in domestic geriatric practice and scientific research is possible after testing the instrument in a population of elderly and senile patients with the participation of primary care specialists and evaluating the psychometric properties of the instrument - reliability, sensitivity and specificity within the validation procedure.

Using the Delphi Method to Elucidate Patient and Caregiver Experiences of Cancer Care.

Objective: Identify the most salient elements of the head and neck cancer (HNC) care experience described by patients and caregivers in focus group interviews. Methods: Three focus groups of patients and caregivers were facilitated by research assistants and clinicians. Open-ended guiding questions captured/elicited aspects of care that were appreciated, warranted improvement, or enhanced communication and information. A four-step Delphi process derived consensus among focus group facilitators (n = 5) regarding salient discussion points from focus group conversations. Results: Seven salient themes were identified: (1) information provision, (2) burden related to symptoms and treatment side effects, (3) importance of social support, (4) quality of care at both hospital and provider levels, (5) caring for the person, not just treating cancer, (6) social and emotional impact of HNC, and (7) stigma and insufficient information regarding human papillomavirus-related HNC. Conclusion: Participants reported varying needs and support preferences, a desire for individualized communication, and to feel cared for as both a person and a patient. Findings illuminate the intricate details underlying high-quality, compassionate, person-centered HNC cancer care.

Assessing cough symptom severity in refractory or unexplained chronic cough: findings from patient focus groups and an international expert panel.

BackgroundCough symptom severity represents an important subjective end-point to assess the impact of therapies for patients with refractory or unexplained chronic cough (RCC/UCC). As existing instruments assessing the severity of cough are neither widely available nor tested for measurement properties, we aim to develop a new patient-reported outcome measure addressing cough severity.ObjectiveThe aim of this study was to establish items and domains that would inform development of a new cough severity instrument.MethodsThree focus groups involving 16 adult patients with RCC/UCC provided data that we analysed using directed content analysis. Discussions led to consensus among an international panel of 15 experts on candidate items and domains to assess cough severity.ResultsThe patient focus group provided 48 unique items arranged under broad domains of urge-to-cough sensations and cough symptom. Feedback from expert panel members confirmed the appropriateness of items and domains, and provided an additional subdomain related to cough triggers. The final conceptual framework comprised 51 items in the following domains: urge-to-cough sensations (subdomains: frequency and intensity) and cough symptom (subdomains: triggers, control, frequency, fit/bout duration, intensity, quality and associated features/sequelae).ConclusionsConsensus findings from patients and international experts established domains of urge-to-cough and cough symptom with associated subdomains and relevant items. The results support item generation and content validity for a novel patient-reported outcome measure for use in health research and clinical practice.

Development of the ‘AusPROM’ recommendations for elective surgery patients.

Objective Implementing the routine collection of patient reported outcome measures (PROMs) is key to improving healthcare quality and patient satisfaction. The implementation process can be strengthened through staff and patient co-design. The aim of this project was to develop a set of Australian PROM implementation recommendations ('AusPROM') to guide rapid translation into practice. Methods Staff working across 29 Australian private hospitals participated in the project. The hospitals provided elective surgery and spanned each state and territory of Australia. Staff engaged in a Delphi technique to develop the AusPROM, which involved three iterative focus groups. To ensure full disclosure, staff were also provided with additional project-related data sources throughout the Delphi technique. This included data from a patient focus group (patient co-design), patient survey, technical feasibility testing, 3 months of pilot testing (four sites), 3 months of national implementation (29 sites) and global evidence. This process ensured that staff and patient feedback was used to co-design the three iterations of the AusPROM recommendations until the final agreed version was established. Results A total of 22 AusPROM recommendations were included in the final iteration. The recommendations covered the domains of PROM characteristics, healthcare organisation characteristics, external influences, staff and patient characteristics, and facilitators to implementing AusPROMS in routine practice. Conclusion The AusPROM recommendations offer practical considerations for the implementation of PROMs in hospitals. The iterative nature of the Delphi technique ensured that staff and patient co-design were central to the development of the AusPROM recommendations.

Reducing Implicit Bias in Maternity Care: A Framework for Action

Reducing Implicit Bias in Maternity Care: A Framework for Action

Development of a patient reported outcome instrument for chronic sialadenitis

BackgroundSialendoscopy assisted treatments are a minimally invasive management modality for chronic sialadenitis. Clinicians report improved patient quality of life (QoL) following sialendoscopy assisted treatments, but there exist gaps in current literature about patient reported outcomes (PROs). PROs are outcome measures developed based on patient perceptions.ObjectiveThe objective of this study was to create a PRO instrument for chronic sialadenitis, to assess the efficacy of sialendoscopy assisted treatments in improve patients’ QoL.DesignThis four-phase qualitative study employed grounded theory methodology and a modified Delphi technique. In Phase I, ten patients were interviewed to identify the QoL domains impacted by chronic sialadenitis. In Phase II, these QoL domains were presented to a focus group of different chronic sialadenitis patients, who were asked to rank them by order of importance. A conceptual framework of QoL domains impacted by chronic sialadenitis was created based on patient consensus. Itemization of the PRO questionnaire was done by a focus group of four Otolaryngologists in phase III. Lastly, the questionnaire was completed in Phase IV by cognitive interviewing of five new chronic sialadenitis patients; ensuring ease of understanding and clarity.ResultsPatients identified 15 domains of QoL impacted by chronic sialadenitis, divided into three sub-scales: physical symptoms, psychosocial symptoms, and activity restriction. These domains provided the basis for creation of a 22-item PRO questionnaire, with a Likert-type response scale.ConclusionClinical application of the novel questionnaire produced by this study will allow for a patient-centered assessment of the patient reported effectiveness of sialendoscopy assisted therapies for management of chronic sialadenitis.Level of evidence Level V.Graphical

Оценка эффективности применения пятиминутного когнитивного теста у недементных пациентов с когнитивными нарушениями (пилотное исследование)

Background: the Five-Minute Cognitive Test (FCT) was designed in 2019 by the Chinese scientists to capture deficits in five domains of cognitive abilities, including episodic memory, language fluency, time orientation, visuospatial function, and executive function. Aim: to evaluate the efficiency of the Russian FCT version for identifying cognitive impairments (CI) in non-demented patients. Patients and Methods: according to the international requirements and standards, the FCT was translated and adapted and then evaluated in a focus group of non-demented patients (n=62, 60–75 years old) followed by the assessment of its psychometric properties. The FCT results were compared with the MMSE and Montreal Cognitive Assessment (MOCA) scores in two patient groups: the treatment group (n=30) consisting of patients with moderate CI, before after the cognitive rehabilitation course, and the comparison group, consisting of 32 individuals with normal cognitive functions. In addition, the correlation of the hippocampal volume with FCT/MMSE scores was assessed. Results: the average time to complete FCT was 5–6 min. The sensitivity and specificity of PCT for CI screening was 80.6% and 84.11%, respectively. As demonstrated by the study findings, FCT’s diagnostic performance was not inferior to that of other tests used for detecting CI. The neurovisualization data showed that there was a positive correlation between the hippocampal volume and the FCT/MMSE scores. Conclusion: the preliminary results suggest that the Russian FCT version is acceptable and promising for the use in clinical practice as a relevant screening test for identifying CI. KEYWORDS: mild cognitive impairments, moderate cognitive impairments, Alzheimer’s disease, brief cognitive test. FOR CITATION: Tuzhikov K.P., Voitenkov V.B., Ekusheva E.V. Evaluating the efficiency of a five-minute cognitive test for the use in non- demented patients with cognitive declines (a pilot study). Russian Medical Inquiry. 2022;6(10):551–555 (in Russ.). DOI: 10.32364/2587- 6821-2022-6-10-551-555

Development of a personalized shared decision-making tool for knee osteoarthritis and user-testing with African American and Latina women.

Patients with chronic knee pain are often unaware of treatment options and likely outcomes-information that is critical to decision-making. A consistent framework for communicating patient-personalized information enables clinicians to provide consistent, targeted, and relevant information. Our objective was to user-test a shared decision-making (SDM) tool for chronic knee pain. A cross-functional team developed a Markov-based health economics model and tested the model outputs with patient panels, patient and clinician focus groups, and clinical specialists. The resulting SDM tool was user-tested in a parallel-designed, randomized controlled study with 52 African American and 52 Latina women from geographically representative areas of the US. Participants were randomized to counseling with or without the SDM tool. Feedback was collected at intervention and at 1 month after intervention and analyzed with Student's t-tests and Chi-squared analyses (alpha = 0.05). Qualitative results indicated patients understood the material, rated the overall experience highly, and were likely to recommend the physician. The SDM group reported high satisfaction with the tool. A greater proportion of the SDM group (56%) reported increased physical activity over baseline at 1 month compared with the control group (33%) (P = 0.0005). New use of medications for knee pain (58% SDM; 49% control) did not differ significantly between groups (P = 0.15). Use of this innovative SDM tool was associated with high satisfaction and a significant increase in self-reported physical activity level at 1 month. The SDM tool may elicit behavioral changes to promote musculoskeletal health.

Postpartum Hypertension Education Improves Patient Hypertension Knowledge

Preeclampsia (PE) and eclampsia account for more than 19% of maternal mortality in Mississippi. Recent patient, provider, and advocacy focus groups have indicated a need for increased awareness and management of postpartum (PP) cardiovascular health among women with prior PE. The aim of this study is to examine the effect of hypertension (HTN) education on the awareness and knowledge of PP cardiovascular health.

OP456 Encouraging Shared Decision-Making Of Goals Of Care Discussions In Lung Cancer Patients Using A Smartphone Application

IntroductionAn important reason for receiving non-beneficial treatment at end-of life is the lack of timely discussions on goals of care and end-of-life preferences. A recent randomized clinical trial demonstrated that patients primed with a questionnaire on their end-of-life preferences were more likely to initiate such conversations with their doctors. Our objective is to integrate the questionnaire into a smartphone application to facilitate early goals of care discussions. To achieve this goal, we first plan to undertake a feasibility study to understand stakeholder preferences.MethodsAs part of a quality improvement initiative at our Canadian quaternary-care hospital, we conducted focus groups with oncology and palliative care physicians and patients to understand barriers to early conversations on end-of-life preferences, and to assess feasibility of using smartphone technology in facilitating these conversations. The app would integrate a questionnaire to patients and send prompts to physicians on patient readiness and timing of conversations.ResultsWe conducted separate focus groups with lung cancer patients (n = 6) and clinicians in oncology (n = 6) and palliative care (n = 6). Clinical teams expressed enthusiasm about early conversations but raised several barriers including system (lack of electronic documentation and access to data; multiple physicians), clinician (lack of time) and patient (stigma associated with end-of-life) barriers. Clinicians agreed that an app could overcome some of these barriers such as access to patient and electronic data by making patients the repository of all their data and empowering them to initiate discussions. However, they raised concerns about universal accessibility of such technology, especially among the elderly. Patient focus groups will take place in March 2021 and inform us on feasibility in this population.ConclusionsThere is a consensus among physicians at our hospital that early end-of-life conversations have the potential to mitigate adverse events and that use of a smart phone app could facilitate such conversations.

Mucopolysaccharidosis type VI (Maroteaux-Lamy syndrome): defining and measuring functional impacts in pediatric patients

BackgroundResearch about pediatric patients’ perspective on mucopolysaccharidosis type VI (MPS VI) and its impact on daily life is limited. We aimed to identify the disease concepts of interest that most impact function and day-to-day life of pediatric patients with MPS VI, and to consider clinical outcome assessments (COAs) that may potentially measure meaningful improvements in these concepts.MethodsPotential focus group participants were identified by the National MPS Society (USA) and invited to participate if they self-reported a clinician-provided diagnosis of MPS VI and were 4 to 18 years, receiving enzyme replacement therapy (ERT), and available to attend a 1-day focus group with their caregiver in Dallas, TX, USA. The focus group consisted of a series of polling and open-ended concept elicitation questions and a cognitive debriefing session. The discussion was audio recorded, transcribed verbatim, and analyzed to identify disease concepts of interest and functional impacts most relevant to participants.ResultsOverall, caregivers (n = 9) and patients with MPS VI (n = 9) endorsed that although their children/they receive ERT, residual symptoms exist and impact health-related quality of life. The key disease concepts of interest identified were impaired mobility, upper extremity and fine motor deficits, pain, and fatigue. Pain was unanimously reported by all patients across many areas of the body and impacted daily activity. Key disease concepts were mapped to a selection of pediatric COAs including generic measures such as PROMIS®, PODCI, CHAQ, and PedsQL™. Caregivers endorsed the relevance of PODCI and PROMIS Upper Extremity, Mobility, and Pain items and all patients completed the NIH Toolbox Pegboard Dexterity Test. Additional COAs that aligned with the disease concepts included range of motion, the 2- and 6-min walk tests, timed stair climbs, Bruininks-Oseretsky Test of Motor Proficiency, 2nd edition, grip strength, pain visual analog scale, and the Faces Pain Scale-Revised.ConclusionAn MPS VI focus group of pediatric patients and their caregivers identified impaired mobility, upper extremity and fine motor deficits, pain, and fatigue as key disease concepts of interest. These disease concepts were mapped to existing pediatric COAs, which were provided to the group for endorsement of their relevance.