Medicine and Health Sciences Commons^™

Meaningful Engagement Of Patients And Families In A Complex Trial Of Advance Care Planning In Primary Care, Angela K. Combe, Deborah L. Dokken, Mary M. Minniti, Annette M. Totten

Patient Experience Journal

Engagement of Patient and Family Advisors (PFAs) is increasingly recommended as best practice in research. During the design and conduct of a large trial of advance care planning (ACP) in primary care, we expanded on the funder’s (Patient-Centered Outcomes Research Institute®) requirement for an engagement plan and sought to develop an innovative approach to fostering and sustaining meaningful engagement of PFAs throughout all phases of the trial. Structures were developed that integrated PFAs into planning and provided the foundation for their ongoing participation. A continuous quality improvement approach became the framework for ongoing engagement. This involved setting goals; collecting data …

Informed Consent In Surgical Practice With Patients’ Experiences: A Cross-Sectional Study, Seda Kumru, Pakize Yiğit, Meryem Demirtaş, Hüseyin Fındık

Patient Experience Journal

This study aims to evaluate patients' experiences and perspectives regarding informed consent in surgical practice. Data for this cross-sectional study were collected from 276 patients using a questionnaire developed by Falagas et al. Descriptive statistics were employed for all questions. Statistical tests such as the Mann-Whitney U test, Kruskal-Wallis test, and Spearman's rank correlation analysis were performed, and Cohen's effect sizes were reported. IBM SPSS 23.0 was used for all analyses, and p<0.05 was considered statistically significant. A high score on both The Delivered Information Index and The Patient-Physician Index represents a positive informed consent process. Among the participants, 65.2% indicated that they understood all parts of the consent form. Of all patients, 92.8% reported that information about the specific surgical procedure was provided by physicians. However, 47.5% of the patients reported that they did not feel comfortable with their surgeons. The mean score of the Delivered Information Index was 5.63 (2.38). The mean patient-physician relationship score was 14.38 (3.31). There was a moderate positive correlation between the delivered information index and the patient-physician relationship (r=0.50; p<0.001). In addition, there was a moderate positive correlation between the delivered information index and the time spent on the informed consent process, as well as between the patient-physician relationship and the time spent on the informed consent process (r=0.52; r=0.40, respectively). The study emphasized the lack of communication between patients and physicians, the limitation of information on treatment risks, adverse effects, and alternative treatment options.

Experience Framework

This article is associated with the Policy & Measurement lens of The Beryl Institute Experience Framework (https://theberylinstitute.org/experience-framework/).

• Access other PXJ articles related to …

Patient Perspectives Of Health-Related Social Needs Screening In An Urban Academic Adult Primary Care Practice, Antony Nguyen, Joselvin Galeas, Jane Jih

Patient Experience Journal

Health-related social needs (HRSNs) affect health outcomes and healthcare utilization. Patients’ perspectives on the incorporation of HRSN screening in primary care settings is limited. We sought to explore adult primary care patient perspectives of HRSN screening from optional patient-provided free-text comments as part of a pilot self-administered HRSN screening survey on seven domains of HRSNs from the Accountable Health Communities HRSNs Screening Tool. The survey was available in English, Chinese or Spanish with a section titled “Comments” that invited patient respondents to provide anonymous free-text responses. We performed a thematic analysis of the written patient comments. Of the 679 participants …

The Silence Of Mitotic Figures, Hope K. Haefner Md

Patient Experience Journal

A career in medicine is guided by the patients you treat and those who have taught you to treat these individuals. Communication is of utmost importance in all aspects of healthcare. However, there are times when communication can be difficult. This story takes you through a physician’s experience that led to a career in women’s healthcare, reflecting on the silence that prevailed as her journey began.

Experience Framework

This article is associated with the Staff & Provider Engagement lens of The Beryl Institute Experience Framework (https://theberylinstitute.org/experience-framework/).

• Access other PXJ articles related to this lens.
• Access other resources related …

Leveraging Telehealth Supportive Oncology Services To Combat Covid-19 Isolation In Breast Cancer Patients: A Cancer Center’S Perspective, Jake R. Erickson, Maranda K. Pahlkotter, Paul D. Thielking, Jane M. Porretta, Regina Rosenthal, Cindy B. Matsen, Kirstyn E. Brownson

Patient Experience Journal

During the COVID-19 pandemic, breast cancer patient in-person visits were converted to telehealth visits. Given our concerns about increased isolation amongst breast cancer patients during the pandemic, and the deleterious effects of such isolation on patient outcomes, we investigated utilization rates of psycho-social services amongst newly diagnosed breast cancer patients at our institution. We explored visit platforms (telehealth versus in-person) and time points prior to and encompassing the early pandemic. Despite decreased new breast cancer visits, there was a greater than 2-fold increase in supportive oncology service encounters in breast cancer patients during COVID-19 suggesting increased need for psycho-oncology resources. …

The Initial Psychometric Evaluation Of A New Emergency Department Patient-Reported Experience Measure (Ed Prem), Claudia Bull, Julia Crilly, Sharon Latimer, Emma Hall, Brigid M. Gillespie

Patient Experience Journal

Patient-reported experience measures (PREMs) are critical to evaluating the person-centeredness, safety, and quality of healthcare services internationally. The aim of this study was to describe the initial psychometric evaluation of a new Emergency Department (ED) PREM. Adult patients presenting to the ED of a tertiary hospital in southeast Queensland, Australia during January 2022 were recruited in-person. Participants selected their preferred ED PREM mode of administration from online, telephone, or postal, and had 14 days from recruitment to complete the survey. Item reduction, structural validity, discriminant validity, and internal consistency reliability were assessed. A sample of 349 (68.4%) was achieved. Item …

Patient Experience In An Interprofessional Collaborative Practice For Underserved Patients With Heart Failure, Connie White-Williams, Maria R. Shirey, Reid Eagleson, Wei Su, Terri Poe, Brittany Fitts, Vera Bittner

Patient Experience Journal

Heart failure is a complex chronic condition that results in multiple patient visits throughout the care continuum. Patient experience has associations with clinical outcomes. The purpose of this study was to examine patient experience among the underserved in a specialized interprofessional collaborative practice heart failure clinic. This prospective study utilized both qualitative and quantitative data to describe the patient experience within an interprofessional collaborative practice. Data were collected from patient experience surveys in 1128 patients seen in the Heart Failure Transitional Care Services for Adults (HRTSA) clinic between January 1, 2018, and December 31, 2021. Interprofessional collaborative practice surveys were …

Everything I Needed To Know To Be A Pediatric Emergency Room Doctor, I Learned As A Waitress, Sarah Gard Lazarus

Patient Experience Journal

When I began my career as a pediatric emergency medicine physician, I believed I was prepared to take on any medical emergency. However, I was not prepared to provide a good patient family experience. Throughout my years of training, I was not taught productive ways of interacting with patients and was unaware of how impactful the patient family experience would be. Negative patient family experience scores affected my interactions with patients, my shared decision making and my ability to provide quality care. After working to improve my scores, I focused on skills I obtained in a non-medical setting, as a …

Developing A Patient Satisfaction Measure For Imaging-Based Patient Information During Clinical Consultations, Hindrik J.J. Pinkster, Anne M.L. Meesters, Frank F.A. Ijpma, Erik Taal, Joep Kraeima, Peter M. Ten Klooster

Patient Experience Journal

Different types of medical imaging are increasingly being used to explain specific aspects of injuries to patients during consultations. However, there are no validated questionnaires available yet that specifically measure patients’ satisfaction with the use of such images. The objective of this study was to develop and evaluate a patient-centred measure of satisfaction with the use of medical imaging modalities in clinical treatment. A preliminary 22-item version of the Questionnaire for Patient Satisfaction with Imaging (QPSI) was developed based on extant literature and interviews with trauma patients. Final item selection and psychometric evaluations were conducted amongst a sample of 106 …

Patients’ Perceptions And Knowledge Of Source Isolation For Multi-Resistant Organisms In An Australian Metropolitan Hospital: A Bedside Interview With Questionnaire Study, Alison Smith, Gillian Ray-Barruel

Patient Experience Journal

The aim of this study was to explore perceptions and knowledge of source isolation among hospitalised patients colonised or infected with multi-resistant organisms, to identify if information provided and delivery method are helpful and appropriate, and to identify areas for practice improvements. Purposive sampling was conducted. Between November 2019 and January 2020, bedside interviews with structured questionnaires (combining multiple-choice and free-text questions) were conducted with adult in-patients requiring isolation for multi-resistant organisms in a 180-bed metropolitan hospital in Brisbane, Australia. Data analysis included quantifying multiple-choice responses and thematic analysis of free-text responses. Thirty participants completed the interview questionnaire. Lack of …

Going From An Academic Medical Center To A Community Hospital: Patient Experiences With Transfers, Alexander Kazberouk, Nicole Boyd, Sandra Oreper, Michael Chang, James D. Harrison, Priya A. Prasad, Ari Hoffman

Patient Experience Journal

Academic medical centers (AMCs) often operate at or near full capacity, which leads to delays in care while smaller community hospitals may have excess capacity. To address this issue and to match patient needs to care acuity, patients may be transferred from an AMC emergency department for direct admission to a community hospital. We aimed to explore the experiences and perspectives of patients who were transferred. We randomly selected patients transferred between February 2019 and February 2020. We conducted structured thirty-minute interviews containing fixed response and open-ended questions focusing on the transfer rationale and experience, care quality, and patient financial …

Improving The Accuracy Of Interactive Voice Response (Ivr) Technology For Pediatric Experience Scores, Elizabeth Spaargaren Ms, Mph, Cpxp, Abigail Kozak Mba, Cpxp, Cara Herbener Cpxp, Barbara Lawlor Burke Ma, Cpxp

Patient Experience Journal

The increased use of interactive voice response (IVR) in assessing patient and family experience should be paired with evidence-based practices on how to obtain the most accurate information via this survey mode. We added a brief clarification sentence of the survey scale at the start of the IVR call to improve our experience data both qualitatively and quantitatively. Our setting was an urban pediatric hospital. We gathered lived experiences from our patients, families, and providers to understand and design a change to the IVR survey mode that would reduce survey inaccuracies. Outcome measures were assessed by baseline measurement and post-intervention …

The Impact Of Follow-Up Calls After A Pediatric Emergency Department Visit, Joseph R. Mijares Iii, Sephora Morrison

Patient Experience Journal

Pediatric emergency department (ED) visits can be a stressful time for patients and their caregivers. This high stress environment can lead to questions and needed clarifications post-discharge. We implemented a post-discharge callback system to resolve these concerns for a focused subset of patients who historically have provided the most negative comment feedback on ED patient experience surveys. We hypothesized that comment types would shift to more positive than negative and the themes of the comments received would change. We developed a discharge callback process that focused on patients who were triaged as ESI level 4 during their emergency department visit. …

Children’S Experiences Of Hospitalization Over Time: An Evaluation Of Using Poetry And Creative Writing By Children To Assess Their Experiences Of Hospitalization, David Wood

Patient Experience Journal

This article explores children’s experiences of hospital admissions through their poetry and creative writing and assesses the validity of this medium compared to other methods of evaluation. Pediatric patient experiences of hospital and their effects on children have been studied in various ways and there have been stepwise changes throughout the past century, matching the overall changes of medical care from paternalistic to patient centered. 17 poems were analyzed from children aged 6-13 years old (median 10) for recurrent themes whilst admitted to a large tertiary hospital in the north of England. Children frequently wrote about attacks on their senses, …

Living With Brain Cancer: From Researcher To Patient, Stephen P. Chelko, Daniel L. Fay Ph.D.

Patient Experience Journal

As an academic researcher, my work-life revolves around testing the efficaciousness of pharmaceutical drugs on the prevention of cardiac dysfunction, arrhythmias, and sudden cardiac death in animal models of heart disease. I never thought I would go from someone studying a life-threatening disease to a patient living with one in twenty-four hours. Yet, that transformation occurred October 8, 2019. I was just appointed to Assistant Professor at Johns Hopkins University School of Medicine (JHUSOM), yet after sitting for my professional headshot I had a grand mal seizure. I cannot recall this event, but I bit the tip of my tongue …

Global Child And Family-Centered Care Fellowship, Education And Mentorship For Pediatric Healthcare Professionals: A Literature Review, Ashley Zheng, Bobbijo Pansier

Patient Experience Journal

Child- and family-centered care (FCC) is increasingly accepted and implemented to optimize the healthcare experience for patients, their families, and healthcare professionals. Standish Foundation for Children, a 501(c)(3) non-profit, has designed and piloted a fellowship to educate pediatric healthcare professionals in FCC & psychosocial care via an inquiry and mentorship model in Tbilisis, Georgia. This review aimed to evaluate and synthesize existing literature on psychosocial and FCC mentorship for pediatric healthcare professionals in four parts: ongoing need, effects on healthcare professionals, effects on children and their families and/or caregivers, and in cross-country healthcare settings. Reviewers searched open-source databases for articles …

Patient And Provider Experiences With Virtual Care During The Covid-19 Pandemic: A Mixed Methods Study, Mars Zhao, Hisham Elshoni, Jennifer O'Brien, Erin Barbour-Tuck, Mary Ellen Walker, Heather Dyck, Andrea Vasquez, Eric Sy, Angela Baerwald, Clara Michaels, Rejina Kamrul, Olivia Reis, Brenda Schuster, Barb Beaurivage, Adam Clay, Mark Lees, Jonathan Gamble

Patient Experience Journal

The COVID-19 pandemic prompted the rapid uptake of Virtual Care (VC). Positive patient outcomes with VC are previously reported but little is known about the experiences of patients and providers using VC during the pandemic. We aimed to describe patient and primary care provider experiences, satisfaction, perceptions, and attitudes to VC during the COVID-19 pandemic that might explain adoption of VC across the continuum of care and inform sustained uptake. We conducted a sequential explanatory mixed methods study using online surveys and virtual interviews with a convenience sample of primary care providers and patients in a Canadian province (July – …

Effect Of Wearing Masks In The Hospital On Patient-Provider Interaction: “They (Providers) Need To Stay Safe For Their Family And Keep Us Safe.”, Jana L. Wardian, Mikayla Peralta, Chad Vokoun, Sarah E. Richards

Patient Experience Journal

Since March 2020 when the Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2) pandemic was widespread in the U.S., masks became a primary form of protection for healthcare workers when caring for patients. While wearing masks was not a new phenomenon in the health field, there is little known on how the use of them affects the patient-provider relationship. This study explored the experience of wearing masks on the patient-provider relationship in the hospital. This qualitative study involved interviews with both providers and patients at an academic hospital in the Midwest. At the time of this study, in July 2021, hospital …

Positively Waiting: Technology As The Preferred Distractor In A Pediatric Outpatient Setting, Timothy Ernest, Victoria Maddex, Arnaldo Mejias, Lindy Davidson, Donna Ettel-Gambino

Patient Experience Journal

Visiting any pediatric outpatient clinic as a child may be considered a stressful and anxiety-inducing experience. The literature suggests that positive distractions, such as pet therapy and single-user electronic devices, may aid in reducing anxiety and maximizing patient satisfaction throughout the patient’s experience at a pediatric outpatient clinic. The aim of this pilot quality improvement project was to determine which positive distractions patients experienced and whether single-user electronic loaner devices should be provided to patients at pediatric outpatient facilities. A quantitative causal comparative approach was utilized in identifying patient exposure to key positive distraction techniques that may significantly decrease anxiety. …

When Healthcare Leadership And Philanthropy Lead To An Improved Patient Experience: The Paul Lepsoe Music Initiative, Sara Olivier Rn Bscn Mn, Corianne Bell Ba Mus, Cheryl Jones Registered Psychotherapist, Mta, Phd, Jerry M. Maniate Md, M.Ed, Frcpc, Facp

Patient Experience Journal

Through an unprecedented collaboration between an academic acute tertiary care hospital (The Ottawa Hospital (TOH) and a community-based professional orchestra (Ottawa Symphony Orchestra (OSO), the Paul Lepsoe Music Initiative represented an innovative partnership focused on improving patient care via (a) the integration of live music in waiting areas of the hospital’s Cancer Center and (b) the creation of individualized music therapy interventions on the inpatient Palliative Care Unit. Patient, family, and volunteer/staff feedback further refined the intervention throughout the duration of the Initiative; a qualitative process that provided insight into the overall patient experience and opportunities for patients and families …

Patient Involvement In The Development Of Proms Within The Ms Field: A Systematic Review, Signe Baattrup Reitzel, Melinda Magyari, Lasse Skovgaard, Maria Kristiansen

Patient Experience Journal

This review reports on the development of patient-reported outcome measures (PROMs), published within the past ten years, for people with multiple sclerosis (PwMS). Moreover, this review evaluates the extent to which patient participation was integrated in the development of the PROMs. A systematic review was conducted, and four relevant articles were extracted, from which nine PROMs were identified. Patient involvement in the development phase was identified in three PROMs. The results emphasize the need for more patient involvement in the development of new MS-specific PROMs to ensure that the measures reflect the needs and priorities of PwMS.

Experience Framework

This …

Patient Reported Experience In A Radiation Oncology Department, Demetra Yannitsos, Petra Grendarova, Abdulla Al-Rashdan, Linda Watson, Wendy Smith, Fiona Lochray, Jackson Wu, Lisa Barbera

Patient Experience Journal

Understanding patient experience is essential to providing high quality, person-centered care. A real-time baseline cross-sectional study was completed to identify gaps in patient experience that can be targeted for quality improvement (QI). This study is part of PROSE (Person-centered Radiation Oncology Service Enhancement), a QI initiative developed to improve patient experience at a tertiary cancer centre Radiation Oncology (RO) Department. Data was collected using the Your Voice Matters (YVM) questionnaire. The YVM captures information on the patient’s last visit, and questions are organized based on dimensions of person-centered care. Recruitment occurred between May and August 2019 in the radiation department. …

Consumer Experience Of Mental Health Services During The Covid-19 Pandemic: Evidence From An Australian Mental Health System, Sarah Kelshaw, Jason Boyd, Irene Gallagher, Grant Sara

Patient Experience Journal

COVID-19 has increased the need for mental health care but disrupted its delivery. We examined impacts of the first year of the COVID-19 pandemic on consumer experience of NSW hospital and community mental health services, compared to their pre-COVID baseline. We also examined whether increased telehealth use was associated with changes in the quantity or experience of community mental health care. Data were 73,488 Your Experience of Service (YES) surveys from state mental health services in New South Wales (NSW), Australia, grouped into three periods: pre-COVID (January 2018 to March 2020), early-COVID (April to June 2020) and stable-COVID (July to …

Adapting And Responding To A Pandemic: Patient And Family Advisory Councils In Children's Hospitals During Covid-19, Pam Dardess, Deborah L. Dokken, Ndidi I. Unaka, Jesse Hsu, Mindy Hoang, Andrew F. Beck, Beverley H. Johnson

Patient Experience Journal

This mixed-methods study investigated the effects of the COVID-19 pandemic on Patient and Family Advisory Councils (PFACs) within children’s hospitals in the United States. Specifically, the study sought to understand how PFACs adapted operations as a result of the COVID-19 pandemic, how patient and family advisors (PFAs) were engaged in the response to COVID-19, and the intersection of the COVID-19 pandemic with PFAC diversity, equity, and inclusion. The study consisted of a survey distributed to 228 children’s hospitals, with a 73% response rate, and in-depth interviews with selected survey respondents (n=12). While COVID-19 temporarily disrupted PFAC operations and forced rapid …

Patient And Family Engagement: Bridging Together Interprofessional Practice And Patient- And Family-Centred Care, Yuchen Gao, Sylvia Abonyi, Pamela Downe, Krista Baerg, Heather A. Ward

Patient Experience Journal

Patient and family engagement as part of the health care team is increasingly recommended to meet the objective of providing safer and more coordinated care, as well as enhancing patient satisfaction. This project explores both health care professionals’ and patients and families’ experiences with patient- and family-centred care (PFCC) and interprofessional practice (IPP). Data were collected through individual interviews with 29 health care professionals and 17 patients and families on medicine and pediatrics at a tertiary care teaching hospital. Inductive coding and thematic analysis outcomes are presented using qualitative description. We used communicative action theory to interpret the gap that …

Understanding Both Sides Of The Blood Draw: The Experience Of The Pediatric Patient And The Phlebotomist, Julie R. Piazza, Sandra Merkel, Brooke Rothberg, Joan Gargaro, Kristin Kullgren

Patient Experience Journal

A phlebotomist’s words and actions play a crucial role in success of a blood draw and in providing a supportive patient experience. This study examined use of comfort measures during a pediatric blood draw. The phlebotomist’s use of soft words, positioning, distraction, coaching/support were observed with sixty children between 3-14 years of age during a blood draw. The level of fear /anxiety before and during the blood draw was recorded by an RA. The child’s level of fear/anxiety was observed and reported by the parent/caregiver after the procedure. Comfort measures provided by phlebotomists, the parent/caregiver’s report of their child’s usual …

Family’S Sufferings From Asymptomatic Covid: Clinicians’ Perspective, Neha Joshi Dr, Jitender Nagpal Dr, Anand Sinha Dr

Patient Experience Journal

Anticipating dire consequences, in 2020 the world braced itself for the unparalleled pandemic by resorting to unprecedented measures including stringent lockdowns, unforeseen social isolations, spotlight focus, resource diversions besides reorganized healthcare systems to name the quintessential few. Such unifocal convergence enhanced the vulnerabilities of patients dependent on non-COVID healthcare assistance. For a nation with a meagre allocation of 0.7 hospital beds per 1000 people and a lopsided doctor-population ratio of 1:1800, COVID-centric measures created unintended complications. Ironically, many succumbed in myriad ways, not due to the pandemic but due to the attributes of the survival measures. While such consequences cannot …

Using Design-Thinking To Investigate And Improve Patient Experience, Jennifer Smiechowski, Megan Mercia, Kyle Kemp, Elizabeth Oddone Paolucci, Maria Santana, Rahim Kachra

Patient Experience Journal

Understanding and enhancing the patient experience can lead to improved healthcare outcomes. The purpose of this study was to capture a comprehensive and nuanced understanding of the patient experience on an inpatient medical teaching unit in order to identify key deficiencies and unmet needs. We then aim to implement a design-thinking methodology to find innovative ways to solve these deficiencies. Here we present the first two phases of this four-phased study. We retrospectively and prospectively collected quantitative data about patient experience with the Canadian Patient Experiences Survey-Inpatient Care. We then used this data to guide patient interviews. We identified several …

The Experience, Satisfaction, And Emergency Department Utilization Of Pediatric Patients With Sickle Cell Disease During The Covid-19 Pandemic, Alexandra E. Kirsch, Nataly Apollonsky

Patient Experience Journal

The COVID-19 pandemic has influenced how patients utilize healthcare. This study examines the utilization, experience, and satisfaction of patients with Sickle Cell Disease (SCD) in the pediatric Emergency Department (ED) during the COVID-19 pandemic compared to the care they had received before the pandemic. The authors surveyed fifty-eight participants ages 14 months to 20 years who presented to the ED for a complaint related to their SCD during the COVID-19 pandemic. The study analyzed five variables: race, SCD severity, hemoglobin (Hgb) genotype, who completed the questionnaire (patient versus parent/guardian), and whether the ED visit resulted in an admission to the …

A Patient’S Narrative Of Engaging Hiv Care: Lessons Learned To Harness Resources And Improve Access To Care, David Lessard, Serge Vicente, Patrick Keeler, Bertrand Lebouché

Patient Experience Journal

In Canada and the USA, about 30% of people with HIV are uninsured or not covered by government-subsidized health insurance. This paper presents a patient’s narrative of his experience being diagnosed with HIV and accessing care in the midst of his process of immigrating to and studying in Canada. The narrative explores how Vincent Croft (pseudonym) has coped with the chronicity of the infection and its associated social stigma, and the temporary solutions he found to access treatment. Engaging with healthcare providers, researchers, and other people living with HIV has allowed Croft to share his experience, including the barriers he …