Patient Experience Data Research Articles

Co-designing new tools for collecting, analysing and presenting patient experience data in NHS services: working in partnership with patients and carers

BackgroundThe way we collect and use patient experience data is vital to optimise the quality and safety of health services. Yet, some patients and carers do not give feedback because of the limited ways data is collected, analysed and presented. In this study, we worked together with researchers, staff, patient and carer participants, and patient and public involvement and engagement (PPIE) contributors, to co-design new tools for the collection and use of patient experience data in multiple health settings. This paper outlines how the range of PPIE and research activities enabled the co-design of new tools to collect patient experience data.MethodsEight public contributors represented a range of relevant patient and carer experiences in specialist services with varied levels of PPIE experience, and eleven members of Patient and Participation Groups (PPGs) from two general practices formed our PPIE group at the start of the study. Slide sets were used to trigger co-design discussions with staff, patient and carer research participants, and PPIE contributors. Feedback from PPIE contributors alongside verbatim quotes from staff, patient and carer research participants is presented in relation to the themes from the research data.ResultsPPIE insights from four themes: capturing experience data; adopting digital or non-digital tools; ensuring privacy and confidentiality; and co-design of a suite of new tools with guidance, informed joint decisions on the shaping of the tools and how these were implemented. Our PPIE contributors took different roles during co-design and testing of the new tools, which supported co-production of the study.ConclusionsOur experiences of developing multiple components of PPIE work for this complex study demonstrates the importance of tailoring PPIE to suit different settings, and to maximise individual strengths and capacity. Our study shows the value of bringing diverse experiences together, putting patients and carers at the heart of improving NHS services, and a shared approach to managing involvement in co-design, with the effects shown through the research process, outcomes and the partnership. We reflect on how we worked together to create a supportive environment when unforeseen challenges emerged (such as, sudden bereavement).

Using CAHPS patient experience data for patient-centered medical home transformation.

To examine how primary care practices use the Consumer Assessment of Healthcare Providers and Systems (CAHPS) survey and its patient-centered medical home (PCMH) items during their PCMH transition. Qualitative study of practices' use of patient experience data during PCMH transformation, based on a random sample of primary care practices engaged in PCMH transformation, stratified by region, practice size, PCMH recognition history, and use of the CAHPS PCMH survey. We interviewed 105 practice leaders from 294 sampled practices (36% response rate) and used content analysis to identify themes about uses of patient experience data for practice improvement during PCMH transformation. Patient experience data were used primarily to assess and track improvements toward PCMH goals and as quality improvement (QI) metrics. CAHPS measures were used most often to discuss best practices, share data with patient advisory councils, and improve provider performance. The CAHPS PCMH survey helped practices improve patient-centeredness, particularly in coordinating care and supporting patient self-management and communication. The CAHPS PCMH items that assisted practices most were about patient self-management and provider referrals. Most practice leaders using the CAHPS PCMH survey felt that its items were actionable for standardizing PCMH changes or making structural changes. Practices administering CAHPS surveys focused on a more diverse set of QI areas. CAHPS surveys were considered actionable for PCMH transformation and used in standardizing and coordinating care. The CAHPS PCMH items were considered integral to the continuous QI needed for moving beyond formal PCMH recognition and maximizing transformation. This supports the National Committee for Quality Assurance's recommendation to administer the CAHPS or CAHPS PCMH survey for PCMH transformation.

The Utility of Remote Video Technology in Continuing Neurosurgical Care in the COVID-19 Era: Reflections from the Past Year

ObjectiveIn 2020, the coronavirus disease 2019 (COVID-19) pandemic exposed existing stressors in the neurosurgical care infrastructure in the United States. We aimed to detail innovative technologic solutions inspired by the pandemic-related restrictions that augmented neurosurgical education and care delivery.MethodsSeveral digital health and audiovisual innovations were implemented, including use of remote video technology to facilitate inpatient consultations and outpatient ambulatory virtual visits, optimize regional hospital neurosurgical coverage, expand interdisciplinary patient management conferences (i.e., tumor board), and further enhance the neurosurgical resident education program. Enterprise patient experience data were queried to evaluate patient satisfaction following the switch to virtual visits.ResultsBetween January 2020 and April 2021, use of virtual visits more than doubled in the Department of Neurosurgery. A survey of 10,772 patients following ambulatory visits showed that virtual visits were equal if not better in providing satisfactory patient care than in-person visits. After switching our interdisciplinary spine tumor board to a virtual meeting, we increased surgeon participation and attendance by 49.29%. Integration of remote audiovisual technology in resident didactics and clinical training improved our ability to provide comprehensive and personalized educational experiences our trainees.ConclusionsDigital health technology has improved neurosurgical care and comprehensive training at our institution. Investment in the technologic infrastructure required for these remote audiovisual services during the COVID-19 pandemic will facilitate the expansion of neurosurgical care provision for patients across the United States in the future. Governing bodies within organized neurosurgery should advocate for the continued financial and licensing support of these service on a national fiscal and policy level.

Practices and changes associated with patient-centered medical home transformation.

Knowing which patient-centered medical home (PCMH) care delivery changes and quality improvement (QI) practices further PCMH implementation isessential. We used the 2008-2017 National Committee of Quality Assurance (NCQA) PCMH directory of 15,188 primary care practices that received Level 1, 2, or 3 NCQA PCMH recognition to construct a stratified national sample of 105 practices engaged in PCMH transformation. We examined their QI practices and PCMH changes associated with PCMH transformation. We derived QI practice and PCMH change variables from semistructured interviews. Practice leaders completed the PCMH Assessment (PCMH-A) measuring the practice's degree of PCMH implementation, which is a proxy for patient-centeredness. Controlling for practice characteristics, we regressed PCMH-A scores on QI practice and PCMH change variables. Practices undergoing PCMH transformation nationwide most commonly made care delivery changes in access and continuity of care. To improve quality, practices most commonly engaged in discussing and targeting areas of patient experience improvement, trending performance, and conducting targeted QI. However, practices lower in patient-centeredness as measured by the PCMH-A were more likely to engage in efforts to improve patient experiences, such as reviewing patient experience data or engaging in 1-on-1 provider counseling related to patient interactions. Mature PCMH practices focused on changes in continuity of care. Practices undertake a wide variety of care delivery changes and QI practices simultaneously to meet PCMH requirements. The patient experience-specific QI practices and PCMH care delivery changes that practices make to improve patient-centeredness differ by years of PCMH recognition.

The risks and benefits of using social media to engage consumers in service design and quality improvement in Australian public hospitals: findings from an interview study of key stakeholders

BackgroundEngaging consumers - patients, families, carers and community members who are current or potential service users - in the planning, design, delivery, and improvement of health services is a requirement of public hospital accreditation in Australia. There is evidence of social media being used for consumer engagement in hospitals internationally, but in Australia this use is uncommon and stakeholders’ experiences have not been investigated. The aim of the study was to explore the experiences and beliefs of key Australian public hospital stakeholders around using social media as a consumer engagement tool. This article focuses on the study findings relating to methods, risks, and benefits of social media use.MethodsSemi-structured interviews were conducted with Australian public hospital stakeholders in consumer representative, consumer engagement/patient experience, communications or quality improvement roles. Qualitative data were analysed using a deductive content analysis method. An advisory committee of consumer and service provider stakeholders provided input into the design and conduct of this study.ResultsTwenty-six Australian public hospital service providers and consumers were interviewed. Participants described social media being used to: recruit consumers for service design and quality improvement activities; as an online space to conduct consultations or co-design; and, to gather feedback and patient experience data. The risks and benefits discussed by interview participants were grouped into five themes: 1) overcoming barriers to engagement, 2) consumer-initiated engagement; 3) breadth vs depth of engagement, 4) organisational transparency vs control and 5) users causing harm.ConclusionsSocial media can be used to facilitate consumer engagement in hospital service design and quality improvement. However, social media alone is unlikely to solve broader issues commonly experienced within health consumer engagement activities, such as tokenistic engagement methods, and lack of clear processes for integrating consumer and patient feedback into quality improvement activities.

Patients' Experiences in Transitioning to Secondary Progressive Multiple Sclerosis: Qualitative Interviews.

IntroductionCritical gaps exist in the understanding of the continuum of multiple sclerosis (MS) progression, particularly with regard to the patient experience prior to and during the transition from relapsing–remitting MS (RRMS) to secondary-progressive MS (SPMS) stages. To date, there are no clear diagnostic criteria in the determination of the clinical transition. We report here the use of patient experience data to support the development of a qualitative conceptual model of MS that describes the patient journey of transition from active-relapsing disease to progressive MS.MethodsThe study used a single-encounter, multicenter, qualitative observational study design that included a targeted literature review and individual, in-depth interviews with adult patients with a clinically confirmed diagnosis of SPMS and their adult care partners. Descriptions of symptoms and impacts of RRMS and SPMS were extracted from the literature review and used to support development of the interview guide and conceptual model.ResultsParticipants described a slow progression in terms of change in symptoms over time, including both the development of new symptoms and the worsening of existing symptoms.ConclusionsThe conceptual model of the transitionary period from RRMS to SPMS expands the current understanding of the progression of MS from the patient and care partner perspectives.Supplementary InformationThe online version contains supplementary material available at 10.1007/s40120-021-00265-0.

Symptoms and Treatment Needs of People with Dementia-Related Psychosis: A Mixed-Methods Study of the Patient Experience

ABSTRACT Objectives This study describes the person-centered experience and impact of symptoms and the treatment needs of dementia-related psychosis (DRP) from a patient and care partner perspective. Methods Qualitative interviews and a quantitative survey were used to collect patient experience data from persons with DRP or their care partners. Results Sixteen participants (1 person with DRP, 15 care partners) completed the qualitative interview; 212 participants (26 persons with DRP, 186 care partners) completed the quantitative survey. The most commonly reported symptoms were visual hallucinations, auditory hallucinations, persecutory delusions, and distortion of senses. The most common impacts were difficulty differentiating what is real from what is not real, increased anxiety, and effects on personal relationships. Current treatments were less than moderately helpful, and the ability to distinguish what is real from what is not real and overall symptom improvement were described as the most important benefits of an ideal treatment. Conclusions Patient experience data provide insights into urgent therapeutic needs of patients by describing the nature, frequency, and severity of symptoms and the impacts they have on individuals’ lives. Clinical Implications Patient experience data demonstrate an unmet need for treatments to reduce the symptoms and impacts of DRP.

Barriers to Care and Root Cause Analysis of LGBTQ+ Patients' Experiences: A Qualitative Study.

LGBTQ+ (lesbian, gay, bisexual, transgender, queer/questioning, and others) people face a unique set of barriers to receiving quality healthcare. Very little exists in nursing literature that addresses these barriers. This study aimed to analyze patient experience data to better understand the context of barriers to care that LGBTQ+ patients experience, in addition to institutional responses. Documentary analysis was employed to review four LGBTQ+ patient experiences that resulted in formal feedback provided to the Office of Patient Relations. Each case was analyzed for content, process, and outcomes. Through the outlined analysis, the study team found three primary themes and five secondary themes across the four cases. The overarching themes identified through the study's case review include (a) lack of provider knowledge, (b) lack of patient-centered care, and (c) lack of institutional infrastructures associated with the provision of affirming care to LGBTQ+ individuals. Findings suggest the need for a multipronged approach when addressing the care of LGBTQ+ communities. A combination of provider-level education and institutional capacity building to treat diverse patient populations is necessary for addressing the issues demonstrated within the data. Moreover, further research is needed to identify unique needs of transgender and nonbinary patients and determine efficacy of institutional efforts to build capacity for caring and studying the health needs of LGBTQ+ communities.

Speaking to the Heart of Our Patients: An Empathic Communication Education Initiative.

Communicating with empathy is a critical skill within the nurse-patient relationship and a driver of a positive patient experience. Staff at a large midwestern medical organization identified an education-based communication improvement strategy to address a gap within its patient experience data. An evidence-based empathic communication education framework was developed and delivered to more than 8,400 nurses and allied health staff. Posteducation sustainment strategies were included within the framework to support ongoing concept mastery and practical application. A multilevel evaluation strategy was used to measure the education's impact from both a learner and patient perspective. Evaluations demonstrated the chain of impact from reaction, learning, behavior, and results, indicating the education improved staff members' ability to communicate empathically, contributing to an increase from baseline in communication-related patient experience data. [J Contin Educ Nurs. 2021;52(7):319-325.].

Patient-Reported Experiences with Dialysis Care and Provider Visit Frequency.

New payment models resulting from the Advancing American Kidney Health initiative may create incentives for nephrologists to focus less on face-to-face in-center hemodialysis visits. This study aimed to understand whether more frequent nephrology practitioner dialysis visits improved patient experience and could help inform future policy. In a cross-sectional study of patients receiving dialysis from April 1, 2015 through January 31, 2016, we linked patient records from a national kidney failure registry to patient experience data from the In-Center Hemodialysis Consumer Assessment of Healthcare Providers and Systems survey. We used a multivariable mixed effects linear regression model to examine the association between nephrology practitioner visit frequency and patient-reported experiences with nephrologist care. Among 5125 US dialysis facilities, 2981 (58%) had ≥30 In-Center Hemodialysis Consumer Assessment of Healthcare Providers and Systems surveys completed between April 2015 and January 2016, and 243,324 patients receiving care within these facilities had Medicare Parts A/B coverage. Face-to-face practitioner visits per month were 71% with four or more visits, 17% with two to three visits, 4% with one visit, and 8% with no visits. Each 10% absolute greater proportion of patients seen by their nephrology practitioner(s) four or more times per month was associated with a modestly but statistically significant lower score of patient experience with nephrologist care by -0.3 points (95% confidence interval, -0.5 to -0.1) and no effect on experience with other domains of dialysis care. In an analysis of patient experiences at the dialysis facility level, frequent nephrology practitioner visits to facilities where patients undergo outpatient hemodialysis were not associated with better patient experiences.

Evaluation of intermediate care for knee and hip osteoarthritis: a mixed-methods study

BackgroundTo evaluate intermediate care for knee and hip osteoarthritis (KHOA) in the general practice that incorporate specialist services into general practice to prevent unnecessary referrals to hospitals.MethodsWe used a mixed methods approach including semi-structured interviews, patient experience questionnaires and data from medical records from three intermediate care projects. Semi-structured interviews were conducted with patients, general practitioners (GPs), orthopaedists and a healthcare manager in intermediate care. Satisfaction of patients who received intermediate care (n = 100) was collected using questionnaires. Referral data and healthcare consumption from medical records were collected retrospectively from KHOA patients before (n = 96) and after (n = 208) the implementation of intermediate care.ResultsGPs and orthopaedists in intermediate care experienced more intensive collaboration compared to regular care. This led to a perceived increase in GPs’ knowledge enabling better selection of referrals to orthopaedics and less healthcare consumption. Orthopaedists felt a higher workload and limited access to diagnostic facilities. Patients were satisfied and experienced better access to specialists’ knowledge in a trusted environment compared to regular care. Referrals to physiotherapy increased significantly after the implementation of intermediate care (absolute difference = 15%; 95% CI = 7.19 to 22.8), but not significantly to orthopaedics (absolute difference = 5.9%; 95% CI = -6.18 to 17.9).ConclusionsOrthopaedists and GPs perceived the benefits of an intensified collaboration in intermediate care. Intermediate care may contribute to high quality of care through more physiotherapy referrals. Further research with longer follow-up is needed to confirm these findings and give more insight in referrals and healthcare consumption.

PMS26 Decision-Making and Experienced Benefits and Risks of Corticosteroids As a Treatment for Duchenne Muscular Dystrophy

Duchenne muscular dystrophy (DMD) is a rare pediatric-onset neuromuscular disorder. One therapy is approved for all patients, regardless of genotype: the corticosteroid Emflaza, which slows loss of function. There are limited patient experience data even though corticosteroids have been standard of care for over 10 years. This study, led by Parent Project Muscular Dystrophy, uses a community-engaged approach to understand corticosteroid decision making and anticipated or experienced benefits and side effects. Teenagers and adults with DMD and parents participated in semi-structured interviews via Zoom led by experienced interviewers. Data were systematically analyzed by corticosteroid-use and cohort using a rapid analysis approach. 25 respondents were parents and 16 living with DMD. 26 of DMD index cases were current corticosteroid users; 3 prior users; and 10 parents were deciding whether to initiate use in young children. Most respondents characterized corticosteroids as the only available treatment and better than no treatment. Users reported a range of benefits, with the majority indicating maintained strength, prolonged independent daily activities, and improved mobility. Users reported a range of bothersome side effects, the most common of which were weight gain and mood changes. Most parents of users reported difficult decisions to initiate corticosteroids in the pediatric period. Most users with DMD endorsed their parents’ choice and chose to continue use. Among non-users, individuals who discontinued did so due to side effects. Parents of children still deciding on use had serious concerns about negative effects and almost all reported they were unlikely to choose corticosteroids for treatment. Though corticosteroids were described as an imperfect and only moderately-effective therapy, users appreciated benefits and reported side effects as manageable. Decision making to initiate was challenging to many. Non-users had strong concerns about side effects. Parents of younger children especially were optimistic about future alternatives to corticosteroids.

Digital Innovation in Medicinal Product Regulatory Submission, Review, and Approvals to Create a Dynamic Regulatory Ecosystem-Are We Ready for a Revolution?

The pace of scientific progress over the past several decades within the biological, drug development, and the digital realm has been remarkable. The’omics revolution has enabled a better understanding of the biological basis of disease, unlocking the possibility of new products such as gene and cell therapies which offer novel patient centric solutions. Innovative approaches to clinical trial designs promise greater efficiency, and in recent years, scientific collaborations, and consortia have been developing novel approaches to leverage new sources of evidence such as real-world data, patient experience data, and biomarker data. Alongside this there have been great strides in digital innovation. Cloud computing has become mainstream and the internet of things and blockchain technology have become a reality. These examples of transformation stand in sharp contrast to the current inefficient approach for regulatory submission, review, and approval of medicinal products. This process has not fundamentally changed since the beginning of medicine regulation in the late 1960s. Fortunately, progressive initiatives are emerging that will enrich and streamline regulatory decision making and deliver patient centric therapies, if they are successful in transforming the current transactional construct and harnessing scientific and technological advances. Such a radical transformation will not be simple for both regulatory authorities and company sponsors, nor will progress be linear. We examine the shortcomings of the current system with its entrenched and variable business processes, offer examples of progress as catalysts for change, and make the case for a new cloud based model. To optimize navigation toward this reality we identify implications and regulatory design questions which must be addressed. We conclude that a new model is possible and is slowly emerging through cumulative change initiatives that question, challenge, and redesign best practices, roles, and responsibilities, and that this must be combined with adaptation of behaviors and acquisition of new skills.

What does the patient have to say? Valuing the patient experience to improve the patient journey

BackgroundPatient-reported data—satisfaction, preferences, outcomes and experience—are increasingly studied to provide excellent patient-centred care. In particular, healthcare professionals need to understand whether and how patient experience data can more pertinently inform the design of service delivery from a patient-centred perspective when compared with other indicators. This study aims to explore whether timely patient-reported data could capture relevant issues to improve the hospital patient journey.MethodsBetween January and February 2019, a longitudinal survey was conducted in the orthopaedics department of a 250-bed Italian university hospital with patients admitted for surgery; the aim was to analyse the patient journey from the first outpatient visit to discharge. The same patients completed a paper-and-pencil questionnaire, which was created to collect timely preference, experience and main outcomes data, and the hospital patient satisfaction questionnaire. The first was completed at the time of admission to the hospital and at the end of hospitalisation, and the second questionnaire was completed at the end of hospitalisation.ResultsA total of 254 patients completed the three questionnaires. The results show the specific value of patient-reported data. Greater or less negative satisfaction may not reveal pathology-related needs, but patient experience data can detect important areas of improvement along the hospital journey. As clinical conditions and the context of care change rapidly within a single hospital stay for surgery, collecting data at two different moments of the patient journey enables researchers to capture areas of potential improvement in the patient journey that are linked to the context, clinical conditions and emotions experienced by the patient.ConclusionBy contributing to the literature on how patient-reported data could be collected and used in hospital quality improvement, this study opens the debate about the use of real-time focused data. Further studies should explore how to use patient-reported data effectively (including what the patient reports are working well) and how to improve hospital processes by profiling patients’ needs and defining the appropriate methodologies to capture the experiences of vulnerable patients. These topics may offer new frontiers of research to achieve a patient-centred healthcare system.

A Modified CGM Algorithm Enhances Data Availability While Retaining iCGM Performance

The algorithm for the Dexcom G6 CGM System was enhanced to retain accuracy while reducing the frequency and duration of sensor error. The new algorithm was evaluated by post-processing raw signals collected from G6 pivotal trials (NCT02880267) and by assessing the difference in data availability after a limited, real-world launch. Accuracy was comparable with the new algorithm-the overall %20/20 was 91.7% before and 91.8% after the algorithm modification; MARD was unchanged. The mean data gap due to sensor error nearly halved and total time spent in sensor error decreased by 59%. A limited field launch showed similar results, with a 43% decrease in total time spent in sensor error. Increased data availability may improve patient experience and CGM data integration into insulin delivery systems.

Patient experience data as enacted: Sociomaterial perspectives and 'singular-multiples' in health care quality improvement research.

Over the last three decades, sociomaterial approaches to the study of health care practices have made an important contribution to the sociology of health care. Significant attention has been paid to the role of technology and artefacts in health care and the operation of actor-networks but less space has been given to questions of ontological multiplicity in health care practices. In this paper, we draw upon our study of patient experience data in five acute hospitals in England to illustrate how treating patient experience data as 'singular-multiples' can enable useful insights into patient experience data work in health care organisations. Our data was generated during 12months of fieldwork at five participating hospitals and included organisational documents, field notes, informal and formal interviews with frontline and managerial staff and patient representatives at the study sites. We use the examples of the Friends and Family Test (FFT) and the National Cancer Patient Experience Survey (NCPES) in England to consider the multiple nature of data as it is enacted in practice and the work data does when coordinated as an entity in the singular. We argue that, and discuss how, the sociomaterial insights we discuss here are relevant to health care quality and improvement research and practice.

Understanding quality and equity: patient experiences with care in older adults diagnosed with hematologic malignancies.

Oncology settings increasingly use patient experience data to evaluate clinical performance. Given that older patients with hematologic malignancies are a high-risk population, this study examined factors associated with patient-reported health care experiences during the first year of their cancer diagnosis. Cross-sectional study using the 2000-2015 SEER-CAHPS® data to examine patient experiences of Medicare enrollees with a primary diagnosis of leukemia or lymphoma. The primary outcomes were three CAHPS assessments: overall care, personal doctor, and health plan overall. We estimated case-mix adjusted and fully adjusted associations between factors (i.e., clinical and sociodemographic) and the CAHPS outcomes using bivariate statistical tests and multiple linear regression. The final sample included 1,151 patients, with 431 diagnosed with leukemia and 720 diagnosed with lymphoma (median time from diagnosis to survey 6months). Patients who completed the survey further apart from the diagnosis date reported significantly higher adjusted ratings of care overall (β .39, p = .008) than those closer to diagnosis. American Indian/Alaska Native, Asian, and Pacific Islander patients had lower adjusted ratings of care overall (β - .73, p = .003) than Non-Hispanic white patients. Multimorbidity was significantly associated with higher adjusted personal doctor ratings (β .26, p = .003). Unfavorable patient experiences among older adults diagnosed with hematologic malignancies warrant targeted efforts to measure and improve care quality. Future measurement of experiences of cancer care soon after diagnosis, coupled with careful sampling of high-priority populations, will inform oncology leaders and clinicians on strategies to improve care for high-risk, high-cost populations.

Twitter Sentiment at the Hospital and Patient Level as a Measure of Pediatric Patient Experience

Although pediatric cancer survival rates have improved, cancer is still the leading cause of death by disease among children in the United States. With nearly 16,000 new diagnoses each year of children having an average age of six years old, there is still much to be done to improve survival rates among children diagnosed with cancer. Additionally, clinical outcomes can be greatly improved by first understanding the patient perspective and, consequently, there is a need to understand the pediatric cancer patient experience. Interest in the analysis of patient-reported outcome (PRO) measures, including those specific to patient experience, has grown in recent years as attempts are made to understand and assess latent (i.e., unobserved) traits such as quality of life. While most traditional PRO measures involve lengthy and costly surveys that are limited in scope, posts on social media platforms are frequently lauded as more authentic, unbiased measures of patient experience. While many previous studies have utilized Twitter as a source for patient experience data that is not easily captured by traditional PROs, very few studies have examined the use of Twitter data to explore and better understand the experience of pediatric cancer patients specifically. Lexicon-based sentiment analysis of Twitter data was used both to examine the pediatric cancer patient experience as well as to compare the attitudes, perceptions, and overall impressions of individuals with St. Jude experiences to those with more general experiences. Results indicated that patients reflected on their care with more relative negativity when speaking of experiences other than St. Jude. While there were some notable differences between the two comparison groups, the sentiment of both was still mostly positive. Pediatric oncology differs greatly from adult oncological care and, thus, the proposed use of sentiment analysis with patient social media posts serving as authentic PRO data likely differentiates more between medical providers and clinical care settings when assessing adult patient experience. Despite limitations, this exploratory study suggests that Twitter can be utilized as a source for authentic, real-time patient experience data that will improve overall care and better clinical outcomes, even among the pediatric cancer patient population.

Parent Experiences of Sanfilippo Syndrome Impact and Unmet Treatment Needs: A Qualitative Assessment.

IntroductionSanfilippo syndrome (MPS III) is a rare, degenerative condition characterized by symptoms impacting cognitive ability, mobility, behavior, and quality of life. Currently there are no approved therapies for this severe life-limiting disease. Integrating patient and caregiver experience data into drug development and regulatory decision-making has become a priority of the Food and Drug Administration and rare disease patient communities.MethodsThis study assesses parents’ perceptions of their child’s Sanfilippo syndrome disease-related symptoms using a research approach that is consistent with the Center for Drug Evaluation and Research (CDER) guidance. This study was initiated by the Cure Sanfilippo Foundation, and all steps in the research process were informed by a multidisciplinary advisory committee, with an objective of informing biopharmaceutical companies and regulatory agencies. We explored caregiver burden, symptoms with greatest impact, and meaningful but unmet treatment needs. Data were collected from 25 parents through three focus groups and a questionnaire. Transcripts were coded and analyzed using inductive thematic analysis, and descriptive analysis of quantitative data was conducted.ResultsParticipating parents’ children ranged in age from 4 to 36 years. Participants endorsed high caregiving burden across all stages of the disease. Analysis revealed multiple domains of unmet need that impact child and family quality of life, including cognitive-behavioral challenges in communication, relationships, behavior, anxiety, and child safety; and physical health symptoms including sleep, pain, and mobility. Participants reported placing high value on incremental benefits targeting those symptoms, and on a treatment that would slow or stop symptom progression.ConclusionEven modest treatment benefits for Sanfilippo syndrome were shown to be highly valued. Despite high caregiver burden, most parents expressed a willingness to “try anything,” including treatments with potentially high risk profiles, to maintain their child’s current state.Electronic supplementary materialThe online version of this article (10.1007/s40120-020-00226-z) contains supplementary material, which is available to authorized users.

Dementia‐related psychosis symptoms and impact from the patient and care partner (caregiver) perspective: An observational, prospective study to describe the patient experience

AbstractBackgroundThis study aimed to describe the person‐centered experience of symptoms and impact of dementia‐related psychosis (DRP) from a patient and care partner (CP) perspective.MethodsThis observational, non‐interventional, prospective study collected patient experience data to understand the impact of DRP in persons with various dementia subtypes. Qualitative interviews were conducted with persons or their CP who have a clinical diagnosis of all‐cause dementia with psychotic symptoms, recruited through physician referrals. The quantitative online survey was completed by persons with self‐reported DRP or their CP recruited by advocacy groups: UsAgainstAlzheimer’s and the Lewy Body Dementia Association. CP burden was beyond the scope of this study.ResultsSixteen individuals (1 patient, 15 CP) participated in the qualitative interview. The most commonly reported symptoms of DRP were visual hallucinations (88%), auditory hallucinations (69%), and persecutory delusions (56%). Participants described an impact of DRP on activities of daily living (75%), sleep (63%), family life (56%), and safety concerns (56%). The quantitative portion was completed by 212 participants (26 patients, 186 CP). DRP symptoms most frequently reported by patients were visual hallucinations (89%), auditory hallucinations (54%), and distortion of senses (54%); those reported by CP were paranoid delusions (76%), visual hallucinations (75%), and lack of trust for loved ones (52%). For patients with recent visual hallucinations, 61% of patients and 70% of CP reported experiencing this symptom on a weekly basis. When asked to rank the impact on the patient’s life, patients reported that visual hallucinations were the most impactful symptom (Figure 1) whereas CP reported paranoid delusions/false beliefs as most impactful, followed by visual hallucinations (Figure 2). Difficulty differentiating what is real from what is not real, increased anxiety, and effects on personal relationships were the most common types of impacts reported by both patients and CP. Most patients (>40%) were not receiving medications for DRP.ConclusionsPersons with DRP experience hallucinations and delusions that have a substantial impact on their lives. Here, patient experience data demonstrate that there is a need for treatments to reduce the symptoms and impacts of DRP.