Patient Voice Research Articles

Inpatients' experiences of falls: A qualitative meta-synthesis.

Identify and synthesize published qualitative research reporting inpatient experiences of a fall to determine novel insights and understandings of this longstanding complex problem. Qualitative meta-synthesis. Online databases were searched to systematically identify published research reporting inpatient experiences of a fall. The included studies were inductively analysed and interpreted then reported as a meta-synthesis. Databases Ovid MEDLINE, Embase, Ovid Emcare, CINAHL Complete, Scopus and ProQuest Dissertations and Theses Global were searched on 3rd August, 2023. From 10 included publications, four new themes of inpatients' experiences of a fall were constructed. Themes one, two and three related to antecedents of patient falls, and theme four related to consequences. Theme one, 'My foot didn't come with me: Physiological and anatomical changes', encompassed patients' experiences of medical conditions, medication, and anatomical changes. These aspects contributed to alterations in balance and strength, and misconceptions of capability in activities of daily (inpatient) living. Theme two, 'I was in a hurry: Help-seeking', encompassed patients' experiences striving for independence while balancing power and control, minimizing their own needs over care of others', and unavailability of support. Theme three, 'I couldn't find the call light: Environment and equipment', encompassed patients' experiences of not being able to reach or use equipment, and environment changes. Theme four, 'It was my fault too: Blame and confidence', encompassed patients' expressions of blame after their fall, blame directed at both themselves and/or others, and impacts on confidence and fear in mobilizing. Inpatient falls are embedded in a complexity of individual, relational, and environmental factors, yet there are potential ways forward both informed and led by the patient's voice. Strength-based approaches to address the tenuous balance between independence and support may be one opportunity to explore as a next step in complementing the existing multifaceted interventions. Inpatient falls are a complex and costly health safety and quality problem. Despite global initiatives in the prevention of inpatient falls, they remain intractable. This meta-synthesis provides an in-depth exploration of extant qualitative data on patients' experiences of falls in hospitals. Four themes were constructed expressing the inpatients' experiences: physiological and anatomical changes, help-seeking, environment and equipment, and blame and confidence. Novel considerations for future investigation are offered, drawing from self-determination theory and positive psychological interventions. This meta-synthesis elicits new considerations for future interventions based on people's experiences of their fall in hospital, offering healthcare professionals novel directions in fall prevention. The review was reported according to the Enhancing transparency in reporting the synthesis of qualitative research statement (ENTREQ; Tong etal., 2012). No Patient or Public Contribution. PROSPERO CRD42023445279.

Determining the minimally clinically important difference for the pediatric liver transplant quality of life questionnaire.

The Pediatric Liver Transplant Quality of Life (PeLTQL) questionnaire is a disease-specific patient reported outcome measure for pediatric liver transplant (LT) recipients. To-date, threshold values above which a change in PeLTQL score is considered meaningful to patients are unavailable. This study proposes the first values for the minimally clinically important difference (MCID) for the PeLTQL. In this retrospective cohort study, anchor and distribution-based methods were used to estimate the MCID for the PeLTQL. Questionnaires completed between March 2013, and July 2022 were included if data from two sequential visits were available. An internal anchor question was used for anchor-based determination of the MCID. A final MCID estimate was ascertained from triangulation of all methods. PeLTQL data from 65 LT recipients (26 [40%] male, 17 [42%] biliary atresia, median age at LT 3.08 years [IQR 0.99-7.30]), and their caregivers were included for analysis. Median patient age at time of baseline PeLTQL completion was 13.84 (10.90-15.86) years. The MCID for self-PeLTQL total scores ranged from 4.53 to 8.46, and from 4.47 to 8.85 for proxy responses. By triangulation, the MCID of the PeLTQL total score was 6.45 and 6.78 for self and proxy responses respectively. A change in PeLTQL score of 6.5 or more points suggests a change in health status that is meaningful to the patient, providing the clinical team an opportunity to engage the patient's voice in reassessing current health status and management strategies.

Giving patients a voice for healthcare reform in Austria: the qualitative voice-study.

Inclusion of patients in healthcare service and system planning is an increasingly important tool to improve healthcare systems worldwide. In 2012, a focused healthcare reform was initiated in Austria to strengthen the primary care sector which is still underway in 2023. The aim of this study was to assess the perceptions, desires, and needs of patients in terms of primary care as a necessary building block of the Austrian healthcare reform. This study was designed as an exploratory qualitative study using semi-structured interviews between the years 2013 and 2018. Interviews with patients focused on positive and negative experiences with regard to general practice (GP) consultations and perceptions of the primary care system in general, as well as desires for improvement. Qualitative content analysis was used to analyse the material using the software atlas.ti. Altogether, 41 interviews were conducted with seven categories identified. These categories include organization and time management around consultation, access, and availability including opening hours, human and professional aspects of consultation, infrastructure and hygiene of the waiting room, healthcare system factors, as well as non-clinical/administrative staff. Appreciating and responding to patients' perceptions and needs, healthcare reform in Austria should include improvements regarding consultation/waiting time, coordination, and navigation in Primary Care. Successful healthcare reform has to include the patient voice.

Unleashing patient voices: empowering adverse event assessment with complete patient-reported outcomes.

The 124-item patient reported-outcome common terminology criteria for adverse events (PRO-CTCAE) questionnaire, assessing 78 symptoms, is widely used in cancer clinical trials to identify side effects. However, its regular use in routine cancer care is rarely reported. We aimed to investigate the feasibility of weekly PRO-CTCAE completion over 9 weeks in a prospective study with 30 patients with cancer undergoing chemotherapy. Participants were asked to complete electronic surveys with reminders, but no feedback or incentives. Only 136 (50%) of the planned 270 time points at which a PRO-CTCAE self-report was expected were completed, with an additional 21 (8%) partially completed, and represents a failure to achieve the expected level of completion. Patients reported experiencing up to 51 and a median of 30 symptoms across all time points, highlighting the complexity of symptom assessment in acute cancer care. While weekly implementation of the PRO-CTCAE may not be feasible outside of clinical trial settings, this study highlights the breadth of symptoms experienced.

Two decades of patient advocacy.

The European Federation of Neurological Associations (EFNA) brings together European umbrella organizations of pan-European neurological patient advocacy groups (www.efna.net) and strives to improve the quality of life of people living with neurological conditions and to work towards relieving the immense social and economic burden on patients, carers and society in general. This article provides an overview of EFNA's activities and achievements over the past two decades, the evolution of patient advocacy during those years, and the increased role and impact of the European patient voice in the neurological arena.

Enhancing clinical education through patient voices.

Enhancing clinical education through patient voices.

The epistemic injustice of borderline personality disorder

Borderline personality disorder (BPD) has been a controversial diagnosis for over 40 years. It was to be removed from the latest version of the ICD, only to be reintroduced as a trait qualifier as a result of last-minute lobbying. Retaining BPD as a de facto diagnosis keeps us stuck at a deadlock that undermines the voices of patients who have persistently told us this label adds ‘insult to injury’. Miranda Fricker's concept of epistemic injustice helps illuminate how this affects subjectivity and speech, hermeneutically sealing patients in ways of thinking that are not evidence-based, resulting in testimonial smothering (altering or withholding one's narratives) and testimonial quieting (dismissing a speaker's capacity to provide worthy testimony) that prevent more affirmative explanations.

Effect of medical mask on voice in patients with dysphonia

AbstractObjectiveMedical masks have been shown to significantly influence speech communication in healthy people. The effect of mask‐wearing on phonatory capability and daily communication exchanges in patients with voice disorders remains unclear. To evaluate the effect of the medical mask on acoustic parameters in patients with a voice disorder, we measured the voice frequency, quality, and intensity.MethodsThirty‐three healthy and 44 voice disorder patients were involved in this study, including 27 patients with vocal‐fold lesions and 17 with primary functional dysphonia. Perceptual evaluation and acoustic parameters, including F0 (fundamental frequency), jitter, shimmer, and maximum vocal intensity, were analyzed without and with medical masks.ResultsWith medical mask‐wearing, the maximum vocal intensity significantly decreased in all patients with voice disorders (p < 0.05), especially in patients with lesions of vocal folds (p < 0.05) and functional dysphonia (p < 0.05). The perceptual evaluation roughness scales also increased in patients with lesions of vocal folds (p < 0.05) and functional dysphonia (p < 0.05) with mask‐wearing. There were no significant effects of mask‐wearing on acoustic parameters for healthy participants.ConclusionsThe intensity was influenced when wearing medical masks in patients with disordered voices. The voice perceptual roughness scales also significantly increased compared to those without medical masks.

Convolutional neural network for IT lung diagnostics

The subject of research is the use of voice processing technology of the patient in IT medicine. The purpose of the article is to develop a neural network for the diagnosis of lung diseases using sound analysis of the patient's voice. The study includes training of a neural network, development of a mobile program for collecting patient sound, extraction of sound characteristics on the server side, diagnostics of sound data using a trained neural network and return of diagnostic results to the mobile application program. A block diagram of voice processing from the source signal to the extraction of an audio file is presented, as an example, the extraction of MFCC and FBank functions is given. The structure of a convolutional neural network (CNN), which was trained on a standard dataset of respiratory diseases, is given. A simplified process of classification of breathing sounds necessary for the prediction of lung diseases is given. For practical implementation, the VGGish network is used in the Python programming environment, which has network parameters trained using a data set. The experiments were carried out on the Android service framework platform, which is divided into two parts: Android front-end and server. The interface part implements the interactive user function and is responsible for entering audio data. After downloading the audio, the server will pre-process the audio, and call CNN to classify the audio, the results are returned to an external module on the smartphone. The total accuracy of the model reached 83.6 %.

Application of Patient-Reported Outcome Measurements in Adult Tumor Clinical Trials in China: Cross-Sectional Study.

International health policies and researchers have emphasized the value of evaluating patient-reported outcomes (PROs) in clinical studies. However, the characteristics of PROs in adult tumor clinical trials in China remain insufficiently elucidated. This study aims to assess the application and characteristics of PRO instruments as primary or secondary outcomes in adult randomized clinical trials related to tumors in China. This cross-sectional study identified tumor-focused randomized clinical trials conducted in China between January 1, 2010, and June 30, 2022. The ClinicalTrials.gov database and the Chinese Clinical Trial Registry were selected as the databases. Trials were classified into four groups based on the use of PRO instruments: (1) trials listing PRO instruments as primary outcomes, (2) trials listing PRO instruments as secondary outcomes, (3) trials listing PRO instruments as coprimary outcomes, and (4) trials without any mention of PRO instruments. Pertinent data, including study phase, settings, geographic regions, centers, participant demographics (age and sex), funding sources, intervention types, target diseases, and the names of PRO instruments, were extracted from these trials. The target diseases involved in the trials were grouped according to the American Joint Committee on Cancer Staging Manual, 8th Edition. Among the 6445 trials examined, 2390 (37.08%) incorporated PRO instruments as part of their outcomes. Within this subset, 26.82% (641/2390) listed PRO instruments as primary outcomes, 52.72% (1260/2390) as secondary outcomes, and 20.46% (489/2390) as coprimary outcomes. Among the 2,155,306 participants included in these trials, PRO instruments were used to collect data from 613,648 (28.47%) patients as primary or secondary outcomes and from 74,287 (3.45%) patients as coprimary outcomes. The most common conditions explicitly using specified PRO instruments included thorax tumors (217/1280, 16.95%), breast tumors (176/1280, 13.75%), and lower gastrointestinal tract tumors (173/1280, 13.52%). Frequently used PRO instruments included the European Organisation for Research and Treatment of Cancer Quality of Life Core Questionnaire-30, the visual analog scale, the numeric rating scale, the Traditional Chinese Medicine Symptom Scale, and the Pittsburgh Sleep Quality Index. Over recent years, the incorporation of PROs has demonstrated an upward trajectory in adult randomized clinical trials on tumors in China. Nonetheless, the infrequent measurement of the patient's voice remains noteworthy. Disease-specific PRO instruments should be more effectively incorporated into various tumor disease categories in clinical trials, and there is room for improvement in the inclusion of PRO instruments as clinical trial end points.

A typology of evaluative health platforms: Commercial interests and their implications for patient voice

Interactions in the healthcare system today involve an important new set of actors: evaluative health platforms (EHPs). These platforms are not neutral intermediaries, but active moderators of how patients express opinions, choose providers, and consume health-related information. This paper adds to our understanding of the varied and evolving commercial interests of EHPs and the implications these have for patient voice. We analyze 71 platforms in the USA, UK, and Germany and identify five ideal types: subscribers, analyzers, advertisers, regulators, and scammers. Each platform type enacts a unique competitive strategy through an evaluative infrastructure which constrains but also generates possibilities for patient voice. Based on our typology, we develop three contributions. First, we nuance universalizing claims about the consequences of platform capitalism by specifying the diverse strategies underpinning competition between EHPs in different countries, and showing how each strategy leads evaluative infrastructures to develop in ways that impact patient voice. Second, we show how patients can navigate the challenges of a complex EHP space by exercising their ability to choose between platforms. Finally, we outline the conditions platforms need to fulfil to become empowering. Overall, this study highlights the varied and complex relationship between platform business models and user voice, which exists not only in healthcare, but also in many other fields.

Patient voice and involvement are at the heart of Kidney Care UK

Patient voice and involvement are at the heart of Kidney Care UK

Assessment of Changes in the Quality of Voice in Post-thyroidectomy Patients With Intact Recurrent and Superior Laryngeal Nerve Function.

Background Thyroidectomy is a routinely performed surgical procedure used to treat benign, malignant, and some hormonal disorders of the thyroid that are not responsive to medical therapy. Voice alterations following thyroid surgery are well-documented and often attributed to recurrent laryngeal nerve dysfunction. However, subtle changes in voice quality can persist despite anatomically intact laryngeal nerves. This study aimed to quantify post-thyroidectomy voice changes in patients with intact laryngeal nerves, focusing on fundamental frequency, first formant frequency, shimmer intensity, and maximum phonation duration. Methodology This cross-sectional study was conducted at a tertiary referral center in central India and focused on post-thyroidectomy patients with normal vocal cord function. Preoperative assessments included laryngeal endoscopy and voice recording using a computer program, with evaluations repeated at one and three months post-surgery. Patients with normal laryngeal endoscopic findings underwent voice analysis and provided feedback on subjective voice changes. The PRAAT version 6.2 software was utilized for voice analysis. Results The study included 41 patients with normal laryngoscopic findings after thyroid surgery, with the majority being female (85.4%) and the average age being 42.4 years. Hemithyroidectomy was performed in 41.4% of patients and total thyroidectomy in 58.6%, with eight patients undergoing central compartment neck dissection. Except for one patient, the majority reported no subjective change in voice following surgery. Objective voice analysis showed statistically significant changes in the one-month postoperative period compared to preoperative values, including a 5.87% decrease in fundamental frequency, a 1.37% decrease in shimmer intensity, and a 6.24% decrease in first formant frequency, along with a 4.35% decrease in maximum phonatory duration. These trends persisted at the three-month postoperative period, although values approached close to preoperative levels. Results revealed statistically significant alterations in voice parameters, particularly fundamental frequency and first formant frequency, with greater values observed in total thyroidectomy patients. Shimmer intensity also exhibited slight changes. Comparison between hemithyroidectomy and total thyroidectomy groups revealed no significant differences in fundamental frequency, first formant frequency, and shimmer. However, maximum phonation duration showed a significantly greater change in the hemithyroidectomy group at both one-month and three-month postoperative intervals. Conclusions This study on post-thyroidectomy patients with normal vocal cord movement revealed significant changes in voice parameters postoperatively, with most patients reporting no subjective voice changes. The findings highlight the importance of objective voice analysis in assessing post-thyroidectomy voice outcomes.

Patient and Provider Perspectives on Postpartum Pain Management in Individuals With Opioid Use Disorder and Chronic Pain [ID 2683542

INTRODUCTION: Birthing people with opioid use disorder (OUD) and chronic pain (CP) face significant barriers to effective postpartum pain management including medical complexity of analgesic decisions as well as stigma and bias towards individuals with these diagnoses. To date, clinical practice guidelines (CPGs) for patients with OUD and CP have lacked patients’ perspectives. We sought to capture voices of patients and their medical providers to inform effective, equitable pain management CPGs for birthing people with OUD and CP. METHODS: We performed a subgroup analysis of 31 patient and 22 provider interviews conducted to develop CPGs. Institional review board approval was obtained along with participant consent, and data were de-identified. We isolated quotes pertaining to OUD and CP from participants with and providers caring for individuals with these conditions. We then used inductive thematic analysis, allowing insights to emerge from the data. RESULTS: In total, 266 quotes were identified relating to OUD and CP. Five key themes emerged from the data: 1) the need to mitigate health care team bias to improve pain management access and experience; 2) the need for standardized sets of pain management options for all patients; 3) the importance of tailoring pain management plans to individuals’ unique needs; 4) the need to partner with patients in creating pain management plans to promote trust and autonomy; and 5) the importance of interprofessional teams in treating postpartum pain for individuals with OUD and CP. CONCLUSION: Interviews with patients and the people who care for them reveal important considerations for CPGs that improve rather than exacerbate existing disparities for birthing people with OUD and CP. Implementation of CPGs informed by patients’ lived experiences is a crucial step in ensuring equitable options for postpartum pain management in patients who face significant biases and barriers to effective care.

Patient-Reported Outcome Measures in Neuromuscular Diseases: A Scoping Review.

Patient-reported outcome measures (PROMs) are valuable in comprehensively understanding patients' health experiences and informing healthcare decisions in research and clinical care without clinicians' input. Until now, no central resource containing information on all PROMS in neuromuscular diseases (NMD) is available, hindering the comparison and choice of PROMs used to monitor NMDs and appropriately reflect the patient's voice. This scoping review aimed to present a comprehensive assessment of the existing literature on using PROMs in children and adults with NMD. A scoping methodology was followed using Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) and COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) guidelines to assess the literature on PROMs in NMDs. Eligibility criteria encompassed articles describing psychometric development or evaluation of generic or disease-specific PROM-based instruments for adults and children with specific NMDs. The data charting process involved extracting measurement properties of included PROMs, comprising validity, reliability, responsiveness, and interpretability information. The review identified 190 PROMs evaluated across 247 studies in individuals with NMDs. The majority of PROMs were disease specific. The physical functioning domain was most assessed. Validity was the most frequently investigated measurement property, with a limited number of PROMs sufficiently evaluated for a range of psychometric characteristics. There is a strong need for further research on the responsiveness and interpretability of PROMs and the development of PROMs on social functioning in NMD.

Blind spots in medical education – International perspectives

Background All individuals and groups have blind spots that can create problems if unaddressed. The goal of this study was to examine blind spots in medical education from international perspectives. Methods From December 2022 to March 2023, we distributed an electronic survey through international networks of medical students, postgraduate trainees, and medical educators. Respondents named blind spots affecting their medical education system and then rated nine blind spot domains from a study of U.S. medical education along five-point Likert-type scales (1 = much less attention needed; 5 = much more attention needed). We tested for differences between blind spot ratings by respondent groups. We also analyzed the blind spots that respondents identified to determine those not previously described and performed content analysis on open-ended responses about blind spot domains. Results There were 356 respondents from 88 countries, including 127 (44%) educators, 80 (28%) medical students, and 33 (11%) postgraduate trainees. At least 80% of respondents rated each blind spot domain as needing ‘more’ or ‘much more’ attention; the highest was 88% for ‘Patient perspectives and voices that are not heard, valued, or understood.’ In analyses by gender, role in medical education, World Bank country income level, and region, a mean difference of 0.5 was seen in only five of the possible 279 statistical comparisons. Of 885 blind spots documented, new blind spot areas related to issues that crossed national boundaries (e.g. international standards) and the sufficiency of resources to support medical education. Comments about the nine blind spot domains illustrated that cultural, health system, and governmental elements influenced how blind spots are manifested across different settings. Discussion There may be general agreement throughout the world about blind spots in medical education that deserve more attention. This could establish a basis for coordinated international effort to allocate resources and tailor interventions that advance medical education.

Integrating the patient voice: patient-centred and equitable clinical risk prediction for kidney health and disease.

Personalized approaches to care are increasingly common in clinical nephrology. Although risk prediction models are developed to estimate the risk of kidney-disease related outcomes, they infrequently consider the priorities of patients they are designed to help. This review discusses certain steps in risk prediction tool development where patients and their priorities can be incorporated. Considering principles of equity throughout the process has been the focus of recent literature. Applying a person-centred lens has implications for several aspects of risk prediction research. Incorporating the patient voice may involve partnering with patients as researchers to identify the target outcome for the tool and/or determine priorities for outcomes related to the kidney disease domain of interest. Assessing the list of candidate predictors for associations with inequity is important to ensure the tool will not widen disparity for marginalized groups. Estimating model performance using person-centred measures such as model calibration may be used to compare models and select a tool more useful to inform individual treatment decisions. Finally, there is potential to include patients and families in determining other elements of the prediction framework and implementing the tool once development is complete.

Patient-reported burden associated with pheochromocytoma/paraganglioma diagnosis.

Pheochromocytoma and paragangliomas (PPGLs) originate from the chromaffin cells of the adrenal medulla or neural crest progenitors outside the adrenal gland, respectively. The estimated annual incidence of PPGL is between 2.0 and 8.0/million adults. Minimal data exist on the impact of PPGL from the patient's perspective. Therefore, a survey was adapted from a previously published study on gastroenteropancreatic neuroendocrine tumors to explore the voice of patients with PPGL and learn ways to improve clinical care while understanding the current gaps to direct future research. A self-reported online survey was available to patients with PPGL and those with genetic predisposition even without PPGL from June to July 2022. Survey questions captured sociodemographic and clinical characteristics, the diagnostic workup, treatment and monitoring, quality and access to care, and financial impact. Here, we report the most relevant findings on patient experience of disease burden following diagnosis. A total of 270 people responded, the majority of whom were from the USA (79%), Caucasian (88%), and female (81%). The results of this survey highlight the burden of disease on a patient's daily life, resulting in moderate to severe financial distress, increased travel time to specialized facilities resulting in loss of work and wages, and significant delays in care. Respondents reported being unheard and unacknowledged. With a median time to diagnosis just over 2 years, the physical, mental, and emotional toll are substantial. Increasing access to PPGL specialists and centers could lead to faster diagnoses and better management, which may reduce the burden on both patients and healthcare centers.

The Ottawa Statement implementation guidance document for cluster randomized trials in the hemodialysis setting

Research teams are increasingly interested in using cluster randomized trial (CRT) designs to generate practice-guiding evidence for in-center maintenance hemodialysis. However, CRTs raise complex ethical issues. The Ottawa Statement on the Ethical Design and Conduct of Cluster Randomized Trials, published in 2012, provides 15 recommendations to address ethical issues arising within 7 domains: justifying the CRT design, research ethics committee review, identifying research participants, obtaining informed consent, gatekeepers, assessing benefits and harms, and protecting vulnerable participants. But applying the Ottawa Statement recommendations to CRTs in the hemodialysis setting is complicated by the unique features of the setting and population. Here, with the help of content experts and patient partners, we co-developed this implementation guidance document to provide research teams, research ethics committees, and other stakeholders with detailed guidance on how to apply the Ottawa Statement recommendations to CRTs in the hemodialysis setting, the result of a 4-year research project. Thus, our work demonstrates how the voices of patients, caregivers, and all stakeholders may be included in the development of research ethics guidance.

12 Tips for Centering Patient Voices through "Lived Experience Panels" in Preclinical Undergraduate Medical Education.

Background: Integrating patient narratives into medical education enhances understanding of person-centered care, empathy, and the human experience of illness. This paper explores the implementation of lived experience panels (LEPs) in preclinical medical education. Aims & Description: Twelve strategies for effective LEP integration are presented, emphasizing thoughtful curation of panelists, timing considerations, vulnerability cultivation, and empowerment of marginalized voices. The paper outlines leveraging virtual platforms, skillful facilitation, student and patient preparation, post-session support, and debriefing mechanisms. Experiences from the University of Texas Branch at Galveston are showcased. Conclusion: The incorporation of LEPs into medical education holds immense potential for benefiting both learners and patients. Ensuring intentional and sensitive inclusion of these panels is paramount for the development of impactful curricula. By incorporating patient voices into medical education, we can nurture empathy, reinforce person-centered care principles, and cultivate authentic connections among learners, ultimately facilitating a transformative shift in the dynamics of the physician-patient relationship.