Medicine and Health Sciences Commons^™

Patients’ Experience Of Specialty Care Coordination: Survey Development And Validation, Varsha G. Vimalananda, Mark Meterko, Kailyn E. Sitter, Shirley Qian, Jolie B. Wormwood, B. Graeme Fincke

Journal of Patient-Centered Research and Reviews

Purpose: Specialty care coordination relies on information flowing bidirectionally between all three participants in the “specialty care triad” — patients, primary care providers (PCPs), and specialists. Measures of coordination should strive to account for the perspectives of each. As we previously developed two surveys to measure coordination of specialty care as experienced by PCPs and specialists, this study aimed to develop and evaluate the psychometric properties of a related survey of specialty care coordination as experienced by the patient, thereby completing the suite of surveys among the triad.

Methods: We developed a draft survey based on literature review, patient interviews, …

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/).

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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/).

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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 …

Identifying Patient Perceptions Of Inequality In Public Health Care Services: Evidence From A Single Indian Administrative District, Barnali Biswas, Piyal Basu Roy

Journal of Patient-Centered Research and Reviews

Purpose: Assessment of patient experiences is an essential step to revamp patient-centered care and identify systemic effectiveness as part of universal health coverage. This paper analyzes the variation of health care at different levels of the public health care system in India by measuring patients’ experience with the care they have received in the Alipurduar district of India.

Methods: From May 2021 to April 2022, stratified sampling technique was applied to collect primary data from 450 patients having different health problems from different levels of the public health care system. In addition, Consumer Assessment of Healthcare Providers and Systems (CAHPS) …

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 …

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, …

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 – …

Asking The Question ‘What Matters To You?’ In A London Intensive Care Unit, Harriet Pittaway, Laura White, Karen Turner, Angelique Mcgillivary

Journal of Patient-Centered Research and Reviews

Purpose: At the heart of the paradigm shift in approach to patient care from paternalism toward shared decision-making lies the international “What Matters To You?” (WMTY) movement. However, WMTY principles are not frequently applied to the critical care setting. The aim of this quality improvement project work was to design and integrate a tool for all patients admitted to the intensive care unit (ICU) that helped answer WMTY.

Methods: Using Plan-Do-Study-Act (PDSA) methodology across 8 cycles, a multidisciplinary team designed and integrated a bedside poster into the ICU. Quantitative and qualitative data were collected via a bedside audit process on …

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 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 …

Evaluating Patient Experience At A Novel Health Service For Aboriginal And Torres Strait Islander Prisoners: A Pilot Study, Lachlan Arthur, Ana Herceg, Heidi Shukralla, Jason Payne, Julie Tongs Oam

Journal of the Australian Indigenous HealthInfoNet

Background
The Winnunga Alexander Maconochie Centre Health and Wellbeing Service (AMCHWS) is the first prison health service operated by an Aboriginal Community Controlled Health Organisation in Australia. This pilot study developed and implemented a patient experience survey to evaluate the novel model of healthcare delivered by the Winnunga AMCHWS to Aboriginal and Torres Strait Islander prisoners.

Methods
Patients accessing the Winnunga AMCHWS between February and May 2020 were invited to participate in the study. Descriptive data were analysed and compiled for demographics, patient satisfaction, patient perception of care quality, cultural safety, and patient thoughts on the Winnunga AMCHWS.

Findings
Sixteen …

Patient Satisfaction With Care Is Associated With Better Outcomes In Function And Pain 1 Year After Lumbar Spine Surgery, Björn Knutsson, Bakir Kadum, Ted Eneqvist, Sebastian Mukka, Arkan S. Sayed-Noor

Journal of Patient-Centered Research and Reviews

Purpose: There has been increasing interest in patient-reported experience measures (PREMs) to evaluate the patient experience and satisfaction with care. We conducted a prospective multicenter cohort study to determine any association between patients’ satisfaction of care and their outcomes 1 year after lumbar spine surgery.

Methods: Satisfaction with care was recorded through telephone interviews and a standardized questionnaire. Baseline data collection (300 patients) and 1-year follow-up (209 patients) were conducted through The Swedish National Register for Spine Surgery (Swespine). Exposures were patient experiences, health care professional (HCP) attitudes, shared decision-making, and overall satisfaction with care. Associations were evaluated using adjusted …

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 …

Patient Experience Rounds (Per): Real-Time Feedback To Improve The Patient Experience And Quality Of Care, Amber Moore, Caroline Moore, Lydia Bunker, Barbara Sarnoff

Patient Experience Journal

While patient feedback is critical to improving the patient experience and clinical care, we are currently limited in our ability to collect feedback in real-time from hospitalized patients. This paper describes our experience and outcomes implementing Patient Experience Rounds (PER). Our model uses trained former patients or family members as volunteers to collect feedback in real-time. Through this feedback, we were able to identify areas for improvement, make adjustments in the moment, and provide targeted feedback to providers. A total of 321 patient encounters were recorded by eight PER advisors. Nursing staff received the highest percentage of positive comments. 49% …

Factors Associated With Patient Rating Of Physician Communication Effectiveness And Satisfaction In Musculoskeletal Care, Amirreza Fatehi, Amanda Gonzalez Md, David Bandell, Joost Kortlever, Léon Rijk, David Ring

Patient Experience Journal

Effective communication is associated with adherence to healthy habits. This study sought factors associated with communication effectiveness and satisfaction with musculoskeletal specialty care in order to inform efforts to improve communication effectiveness using measurement, feedback, and coaching. After a new or return upper extremity specialist visit, 146 adult patients completed a survey recording demographics, measures of catastrophic thinking in response to nociception, symptoms of depression, and symptoms of anxiety, and they rated communication effectiveness (5 questions answered on a 4-point Likert scale) and satisfaction with the visit (slider with anchors of 0 and 100). Patients also provided text answers to …

The Rapid Increase In Telemedicine Visits During Covid-19, Chelsea Johnson, Kathryn Taff, Brian R. Lee, Amanda Montalbano

Patient Experience Journal

Prior to the COVID-19 pandemic, facilitated telemedicine encounters were available at outreach locations; however, our tertiary children’s hospital had not invested widely in direct to patient telemedicine. Our daily pediatric subspecialty visits dropped from an average of 2066 visits a day prior to COVID-19 in our community to 1000 patients a day during the study period. Over the four-week period from April 15 to May 12, 2020, patient and family experience ratings of percentage of positive responses (9 or 10) on the provider rating 0-10 scale between telemedicine and in-person visits were compared for our pediatric subspecialty clinics using a …