Leveraging Digital Patient And Family Advisory Councils To Drive Patient Engagement,
2026
HonorHealth Academic Affairs, Scottsdale, Arizona, USA AND ASU John Shufeldt School of Medicine & Medical Engineering
Leveraging Digital Patient And Family Advisory Councils To Drive Patient Engagement, Priya Radhakrishnan, Shambhavi Mishra, Melissa Price, Cammy Sanders, Fiker Bekele, Kathi Zarubi, Craig Kartchner, Amrit Singh Johal, Carol Mayer, Craig Norquist
Patient Experience Journal
Patient and Family Advisory Councils (PFACs) have been integral in enhancing patient care, but their limited reach often excludes underrepresented populations. Digital PFACs present an opportunity to overcome these barriers and engage a broader spectrum of patients and families, fostering more inclusive healthcare decision-making. We implemented a Digital Patient and Family Advisory Council (DPFAC) at HonorHealth, as part of the Patient Centered Outcomes Research Institute (PCORI) capacity building grant. We used the RE-AIM and PRISM frameworks to engage participants through a digital platform. The process began with a needs assessment and was followed by the development of the platform, during …
Supporting Families Of Children With Craniosynostosis: A Qualitative Exploration Of Parental Usage Of Online Forums,
2026
School of Psychology, University of Adelaide, Adelaide, South Australia, 5005, Australia
Supporting Families Of Children With Craniosynostosis: A Qualitative Exploration Of Parental Usage Of Online Forums, Elisha L. Rea, Rachel M. Roberts, Amanda J. Osborn
Patient Experience Journal
Objective: Craniosynostosis is characterised by the early fusion of cranial sutures, resulting in an abnormal head shape. This study examines the psychosocial impact of a child's craniosynostosis diagnosis on families, by analysing online forum discussions. While surgery is often needed to address appearance-related and neuropsychological concerns, parents face challenges navigating their child's diagnosis. Many seek support through online forums, yet research on their experiences remains limited. This study aims to understand parental needs and experiences by analysing forum discussions. Method: Online forums were analysed using reflexive thematic analysis. Significant features of the data were systematically coded and themes reflecting …
Validation Of A Copd Patient-Reported Experience Measure (Prem-C9) In Ontario, Canada,
2026
School of Health Studies, Faculty of Health Sciences, Western University, London, Ontario Canada
Validation Of A Copd Patient-Reported Experience Measure (Prem-C9) In Ontario, Canada, Elaine Zibrowski, Floriana Islami, Alyson Kellar, Christopher Licskai, Madonna Ferrone, Shannon L. Sibbald
Patient Experience Journal
Objective: Patient-reported experience measures (PREM) are important tools for evaluating healthcare quality, yet their implementation in chronic obstructive pulmonary disease (COPD) care within Canada remains limited. Our objective was to examine the construct validity of the PREM-C9 instrument in a Canadian context and explore its potential clinical applications beyond measuring patient experience. Methods: A two-phase, prospective, cross-sectional, mixed-methods study was conducted across 41 Best Care COPD sites in Ontario, Canada. In the quantitative phase, confirmatory factor analysis assessed the construct validity of the PREM-C9. In the qualitative phase, focus group interviews with COPD case managers explored implementation experiences and perceived …
A Study To Assess Prom And Prem Of Cld Patients In A Tertiary Care Hospital,
2026
Amrita Institute of Medical Science and Research Centre, Amrita Vishwa Vidyapeetham
A Study To Assess Prom And Prem Of Cld Patients In A Tertiary Care Hospital, Anagha Nandakumar, Rubasree M, Priya Nair, Dr. Dinesh Nair, Krishnapriya S
Patient Experience Journal
Chronic liver disease (CLD) leads to progressive liver dysfunction, significantly affecting patients quality of life (QOL). Patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) are critical in evaluating the health status and care experiences of CLD patients. This study aimed to assess the impact of PROMs and PREMs in CLD patients undergoing endoscopic procedures. A prospective study was conducted in the Gastroenterology and Hepatology Department over three months, involving 245 CLD patients (160 inpatients and 85 outpatients). PROMs were assessed using the Liver-specific PROM (LC PROM), which focused on daily living, symptom management, psychological well-being, and treatment effectiveness. PREMs …
Patient-Centered Care To Improve Recruitment And Retention In Clinical Trials: Insights From A Real-Time Interview-Based Satisfaction Study,
2026
Newport High School, Northwest Clinical Research Center AND These authors contributed equally to this work and share first authorship.
Patient-Centered Care To Improve Recruitment And Retention In Clinical Trials: Insights From A Real-Time Interview-Based Satisfaction Study, Christina Zhuang, Aishwarya Prasad, Anshu Arora, Arun Arora, Jeena Vaid, Wisam Aljumaili, Arif Khan
Patient Experience Journal
Patient-centered care is increasingly recognized as essential for understanding participant expectations and generating more accurate and reliable clinical trial results. This study aimed to evaluate an interview-based feedback tool designed to provide a comprehensive assessment of patient experience at a free standing high-enrolling clinical site in the Pacific Northwest. The primary objectives were to identify strengths and weaknesses in current procedures, enhance recruitment and retention, and develop a model adaptable to other sites. A structured interview tool was independently developed based on literature supporting the integration of qualitative and quantitative feedback to capture a multidimensional view of patient experience. The …
Cartoon-Printed Uniforms: A Strategy To Ease Pediatric Hospital Anxiety,
2026
Assistant Professor, Department of Child Health Nursing, D.Y. Patil College of Nursing, D.Y. Patil Education Society (Deemed to be University), Kolhapur, India
Cartoon-Printed Uniforms: A Strategy To Ease Pediatric Hospital Anxiety, Karnellya R. Ohol, Janaki P. Shinde
Patient Experience Journal
This quasi-experimental study evaluated the effectiveness of cartoon-printed nurse uniforms in reducing anxiety among hospitalized children aged 3–12 years. Conducted at a tertiary care hospital in Maharashtra, India, the study included 100 participants (50 intervention, 50 control) who received care from nurses wearing either cartoon-printed uniforms or traditional clinical attire. Anxiety was assessed at baseline and on hospital days 2, 3, and 4 using validated age-appropriate scales: the modified Faces Anxiety Scale (ages 3–6) and the STAI-C short form (ages 7–12). Mixed-effects repeated-measures ANOVA demonstrated a significant group × time interaction (F(3,294) = 42.67, p < .001, partial η² = .304). Children cared for by nurses in cartoon uniforms showed a 48.8% reduction in anxiety compared to 14.7% in controls. Between-group effect sizes increased progressively across days (d = 0.87 to 2.13), indicating cumulative benefit rather than transient novelty. Clinically meaningful improvement (≥30% reduction) was achieved by 76% of intervention participants versus 24% of controls (NNT = 1.92). Staff acceptability was high (95%). Findings indicate that cartoon-printed uniforms are a simple, low-cost, high-impact environmental intervention that significantly enhances pediatric patient experience. Their strong clinical utility, ease of implementation, and alignment with child-centered care principles support adoption across pediatric healthcare settings.
Veteran Emergency Waiting Areas And Turned-Off Televisions: An Overlooked Variable,
2026
School of Communication & the Arts, Liberty University
Veteran Emergency Waiting Areas And Turned-Off Televisions: An Overlooked Variable, Randall Vanadisson
Patient Experience Journal
The significance of environmental design in emergency department (ED) waiting areas is increasingly acknowledged as a vital element affecting patient experience and stress levels, especially among veterans who may already encounter heightened psychological susceptibility. Aim: To investigate the impact of a non-operational television (TV) at a veteran's medical center emergency department waiting area on patient behavior, perceived stress, and environmental involvement. Methods: This naturalistic observation study employed non-participatory observation of 19 patients in the waiting area of a Veterans Affairs hospital. Field notes captured behavioral responses, seating patterns, and nonverbal stress cues. Observable engagement with the physical environment, …
Development And Psychometric Assessment Of The Sub-Scales Of The Ontario Perception Of Care Tool For Mental Health And Addictions (Opoc-Mha),
2026
Emeritus Scientist, Centre for Addiction and Mental Health, Toronto Canada, M5S 2S1
Development And Psychometric Assessment Of The Sub-Scales Of The Ontario Perception Of Care Tool For Mental Health And Addictions (Opoc-Mha), Brian Rush, Karen Urbanoski
Patient Experience Journal
Historically, the tools designed to measure of ``patient satisfaction'' or ``perception of care'' have been developed and evolved separately for the mental health and substance use health sectors. This presents challenges for implementation and usefulness of the results for quality improvement and evaluation given recent efforts aimed at more integrated services and systems. The objective of this study was to psychometrically evaluate eight domain-specific sub-scales of a perception-of-care tool developed specifically for mental health, substance use and/or concurrent disorder services - the OPOC-MHA. The development and process for widescale implementation of the OPOC-MHA has resulted in a large provincial dataset …
Inaccessibility And Performative Inclusivity: Higher-Weight Francophone And Newcomer Adults' Experiences In A Canadian Atlantic Province,
2026
Department of Sociology, University of New Brunswick, P.O. Box 4400, 9 Macaulay Lane, Fredericton, NB, Canada
Inaccessibility And Performative Inclusivity: Higher-Weight Francophone And Newcomer Adults' Experiences In A Canadian Atlantic Province, Andrea E. Bombak, Norma Chinho, Kathleen O'Keefe, Sumaiya Akhter, Lisa Thomson, Courtney Burk, Lee Turner
Patient Experience Journal
Weight stigma research is needed in diverse populations. Two populations that may experience compromised healthcare in New Brunswick, Canada's only officially bilingual province (English/French), are Francophone New Brunswickers and newcomers to Canada. As such, this study explores the experiences of higher-weight (Body Mass Index ≥ 30) adults (≥ 18 years of age) who also identify as primarily Francophone or as having moved to Canada ≤ 5 years ago in and out of healthcare contexts. Participants were interviewed according to a semi-structured interview guide face-to-face, by telephone, or video-call two times, at 2-to-3-month intervals. Interviews included questions about experiences and effects …
The Patient's Lived Experience: A Phenomenological Study On Factors Influencing Tuberculosis Treatment Outcomes In Medan, Indonesia,
2026
Doctor in Pharmaceutical Sciences Program, Faculty of Pharmacy, Universitas Sumatera Utara, Medan 20155, Indonesia
The Patient's Lived Experience: A Phenomenological Study On Factors Influencing Tuberculosis Treatment Outcomes In Medan, Indonesia, Erida Novriani, Urip Harahap, Khairunnisa Khairunnisa, Wiryanto Wiryanto
Patient Experience Journal
This qualitative phenomenological study was conducted to analyze the factors influencing tuberculosis (TB) treatment outcomes from the patient's perspective in Medan, North Sumatra, Indonesia. The objective was to uncover the nuanced human factors shaping the patient's treatment journey, moving beyond a sole reliance on statistics and quantitative methods. The research was conducted across all 41 Primary Health Centers (PHCs) in Medan. Through a purposive sampling strategy, data was collected from 22 TB patients via in-depth interviews until data saturation was achieved. The collected data was analyzed using thematic, narrative, and phenomenological approaches to interpret the detailed lived experiences of the …
Applying A Patient Journey Mapping Approach To Understand Maternal Care Patient Journeys: A Pilot Study,
2026
Department of Mechanical and Industrial Engineering, University of Toronto
Applying A Patient Journey Mapping Approach To Understand Maternal Care Patient Journeys: A Pilot Study, Nicole Hicks, Kristin Tully, Christopher Goodier, Sreenath Chalil Madathil, Ayaba Logan, Myrtede Alfred
Patient Experience Journal
Introduction: In the United States, giving birth is the most common cause of hospitalization. Maternal care frequently represents birthing people's first experiences of prolonged interactions with the healthcare system. However, the structure of services is often fragmented and misaligned with individuals' needs, particularly for Black birthing people. Documenting birthing people's experiences during pregnancy and postpartum allows for identification of practices working well and opportunities to improve patient-centered maternal care. Methods: The mixed-methods study was conducted in the southeastern United States and used patient journey mapping(PJM) to document experiences of patients receiving maternal care at a large academic hospital …
No One-Size-Fits-All: Patient Perspectives Of Key Factors Influencing Their Inpatient Rehabilitation Experience,
2026
Brooks Rehabilitation Hospital, United States
No One-Size-Fits-All: Patient Perspectives Of Key Factors Influencing Their Inpatient Rehabilitation Experience, Mirline Milien, Megan Bewernitz, Katherine Stallings, Mary Ellen Young
Patient Experience Journal
Although patient experience in healthcare settings has historically been an ambiguous concept, it has received increasing recognition as a measure of healthcare quality. Despite this growing recognition and efforts to define patient experience, few studies have explored patient perspectives on the key factors driving this quality indicator. This study aimed to explore the core elements patients view as influencing their experiences in the inpatient rehabilitation setting. This was a single-visit, cross-sectional qualitative interview study. Thirteen patients with diverse diagnoses who received at least one week of rehabilitation services were recruited from a single inpatient rehabilitation facility. Purposive sampling was employed …
Expanding Family Participation In Inpatient Rounds Through Remote Access: A Feasibility Study Using Automated Messaging,
2026
Dana-Farber Cancer Institute, Boston, MA1B13 450 Brookline Ave, Boston MA 02215, US, Brigham and Womens Hospital, 75 Francis Street, Boston MA 02215, US; AND Harvard Medical School, 25 Shattuck Street, Boston MA 02115, US
Expanding Family Participation In Inpatient Rounds Through Remote Access: A Feasibility Study Using Automated Messaging, Praveen Meka, Susan Ayers, Jayme Wilder
Patient Experience Journal
Patient representatives (PR) often wish to be part of the care of their loved ones when hospitalized. However patients are frequently alone during morning bedside rounds. A feasibility study was conducted at a large New England Academic Center to evaluate whether short messaging service (SMS) notifications of morning round times with ability to conference-in could improve remote PR participation in inpatient rounds and assess its impact on communication, acceptability, and care experience. After IRB approval, 17 patients were recruited, resulting in 61 bedside encounters. PRs received daily SMS reminders with scheduled round times and joining instructions; care teams received daily …
The Implementation Of Family-Centered Care And Family Satisfaction In Caring For Children With Cancer,
2026
School of Nursing, Faculty of Medicine, Sam Ratulangi University, Manado, Indonesia
The Implementation Of Family-Centered Care And Family Satisfaction In Caring For Children With Cancer, Lenny Gannika, Mulyadi Mulyadi, Jeanette Irene Christie Manoppo
Patient Experience Journal
Background: Family-Centered Care (FCC) is an approach that involves families actively in their children's care by emphasizing respect, collaboration, and support. The goal is to increase family satisfaction with the care of children with cancer. FCC covers six subscales: general satisfaction, information, family inclusion, communication, technical skills, and emotional needs. Objective: This study aims to analyze the relationship between implementing FCC and family satisfaction when caring for children with cancer. Methods: A cross-sectional quantitative study was conducted at the Estella Children's Cancer Center in Manado, Indonesia, from June to October 2024. Parents of hospitalized children with cancer were selected for …
Using Artificial Intelligence To Enhance Patient Comprehension And Risk Perception Of Pathology Reports: Findings From A Survey Of Patients And Pathologists,
2026
Brown University, Department of Family Medicine
Using Artificial Intelligence To Enhance Patient Comprehension And Risk Perception Of Pathology Reports: Findings From A Survey Of Patients And Pathologists, Jordyn Franco, Osee Koulong Leussa, Amer K. Abu Alfa, Mark K. Fung
Patient Experience Journal
Context: Electronic health records (EHRs) provide patients with direct access to their pathology reports, often before physician consultation. However, the complexity of medical terminology can lead to misinterpretation and anxiety. Artificial intelligence (AI), particularly large language models such as ChatGPT, may improve patient comprehension by simplifying medical language. Objective: This study evaluates ChatGPT's ability to enhance patient understanding and risk perception of pathology reports by generating patient-friendly explanations and assigning a numerical concern level. Pathologists assessed the accuracy of AI-generated summaries. Design: A publicly available colonoscopy pathology report was analyzed using ChatGPT, which produced a simplified summary and concern score. …
Improving Patients' Experience Through Nurturing Care For Patients Undergoing Kidney Biopsies: A Feedback Survey,
2026
Specialty Dr, Renal Medicine, Royal Shrewsbury Hospital, West Midlands
Improving Patients' Experience Through Nurturing Care For Patients Undergoing Kidney Biopsies: A Feedback Survey, Molefe Rapalai, Mahmoud Elshehawy, Johann Nicholas, Patrick Anthony Ball, Hana Morrissey
Patient Experience Journal
Background: Renal biopsies are a key tool in diagnosing kidney diseases, providing histopathological insights for personalised treatment plans. Despite their clinical value, little is explored about how patients experience this invasive procedure. Understanding these experiences is important for improving care quality, safety, and ensuring the process is as patient friendly as possible. There is also a lack of research capturing patient experience feedback on renal biopsies, making studies like this essential for guiding service improvement initiatives. Method: Observational study, May 2022 to June 2024. Eighty-six percutaneous renal biopsies performed. Fifty eligible patients invited to complete the Kidney Biopsy Patient Experience …
Capturing Patient-Centered Quality Of Life: Usability And Initial Validation Of The Pediatric Patient-Generated Index Following Esophageal Atresia Repair,
2026
Faculty of Medicine and Health Sciences, McGill University, Montreal, Quebec, Canada
Capturing Patient-Centered Quality Of Life: Usability And Initial Validation Of The Pediatric Patient-Generated Index Following Esophageal Atresia Repair, Zanib Nafees, Julia Ferreira, Elena Guadagno, Nikki Ow, Nancy Mayo, Jean-Martin Laberge, Dan Poenaru
Patient Experience Journal
The Patient-Generated Index (PGI) is an individualized measure that allows patients to define the domains most important to their quality of life (QoL). This study evaluates the usability and preliminary validity of the pediatric Patient-Generated Index (pPGI) in children who previously underwent esophageal atresia (EA) repair. We conducted a mixed-methods study including the pPGI, EuroQol-5D-Youth (EQ-5D-Y), and PROMIS Life Satisfaction Short Form-8a. Children aged 7–17 years completed self-reports, while parents served as proxies for younger children. Cognitive interviews explored how children understood and completed the pPGI, and clinician interviews assessed clinical usability. Among 25 participants, the pPGI generated 104 text …
Preventing Delirium After Surgery: A Qualitative Study Of Patients, Caregivers, And Providers,
2026
Department of Anesthesiology, College of Medicine, University of Saskatchewan, Saskatoon, SK, Canada
Preventing Delirium After Surgery: A Qualitative Study Of Patients, Caregivers, And Providers, Jennifer O'Brien, Maria Cruz, Heather Dyck, Hassan Yassin, Una Goncin, Lei Xia, Huma Aftab, Lilian Thorpe, Peter Hedlin
Patient Experience Journal
Post-operative delirium is the most common complication in older adults following surgery. Symptoms include agitation, difficulty focusing, sluggishness, hallucinations, slurred speech, restlessness, rapid mood swings, and uncooperative or aggressive behaviour. It can result in longer hospital stays, increased mortality, loss of functional independence, increased need for a higher level of care post-surgery, and an increased risk of readmission to hospital. We aimed to understand and describe the experiences of patients, families, and healthcare providers with postoperative delirium, and to identify targeted initiatives to support patient and family centered care for high-risk patients. We conducted a qualitative descriptive study using interviews …
Beliefs Regarding Patient Experience In The Emergency Department Among Individuals With Sickle Cell Disease,
2026
Health Outcomes Division, College of Pharmacy, The University of Texas at Austin, Austin, TX, US
Beliefs Regarding Patient Experience In The Emergency Department Among Individuals With Sickle Cell Disease, Elizabeth A. Ibiloye, Gloria N. Odonkor, Ayobami A. Aiyeolemi, Jamie C. Barner, Carolyn M. Brown, Hyeun Ah Kang, Benita A. Bamgbade
Patient Experience Journal
Individuals with sickle cell disease (SCD) frequently experience intense, unanticipated pain episodes known as vaso-occlusive events (VOEs), which often require emergency department (ED) treatment. However, they often report suboptimal experiences in the ED. Using the Theory of Planned Behavior (TPB), this study aimed to elicit salient beliefs regarding SCD patient experience in the ED. Three virtual focus group sessions were conducted with individuals with SCD recruited through a Texas SCD Association and Rare Patient Voice. Nine open-ended questions were used to elicit participants' behavioral, normative, and control beliefs regarding ED use when experiencing VOEs. Qualitative analysis was performed using a …
The Voices I Never Heard: Reflections From A Public Health Advocate On Representation, Silence, And Struggle,
2026
Queen Margaret University, Edinburgh, Scotland
The Voices I Never Heard: Reflections From A Public Health Advocate On Representation, Silence, And Struggle, Araya Gautam
Patient Experience Journal
Representation of ethnic minorities among trial participants in the UK is poor. It is true that the need for diversity and inclusive language is important in research, but the practicality of making this a reality for patients from under-represented groups has not generally been the case. As a patient advocate, I have been a participant in clinical trial reviews and advisory boards during the past three years and have engaged in a national-level conversation about patient voice and equity. I draw connections between structured frameworks for patient and public involvement (PPI) in the UK and the more informal, community-based caregiving …
