Medicine and Health Sciences Commons^™

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 …

The Experiences Of Rural British Columbians Accessing Surgical And Obstetrical Care, Aria Jazdarehee, Anshu Parajulee, Jude Kornelsen

Patient Experience Journal

The attrition of small volume surgical and maternity services in rural Canada over the past three decades has made access to these services especially challenging for rural citizens. While many of these closures have occurred as consequences of regionalization, a strategy to regionally centralize healthcare services, many studies investigating outcomes of regionalization have focused on costs and medical endpoints rather than the direct experiences of the rural patients affected. In this study, we aimed to understand and document the experiences of rural residents accessing procedural and maternity care both locally and away from home. This study is part of a …

Delivery Of Patient Education And Support Using An Online Digital Platform For Patients Undergoing Primary Hip And Knee Replacement: The Patient’S Perspectives, Paul N. Baker, Natalie L. Clark

Patient Experience Journal

The aim of the present evaluation was to evaluate the use of an online digital platform (ODP) to deliver patient education and support (PES) to patients undergoing total hip replacement (THR) and total knee replacement (TKR) surgery. Six objectives were outlined to assess the following areas: patient engagement; ease of use; understanding of information; quantity of information; aid of recovery; suggestions for improvements. A qualitative service evaluation of the ODP. Participants included patients who were registered to the platform for THR or TKR, were at least 90 days post-surgery and had accessed at least one carepac. Interviews followed a semi-structured …

Patients’ And Family Caregivers’ Perceptions Of Doctor-To-Doctor Advice And Electronic Referral Notifications In Alberta, Yong Li, Annabelle Wong

Patient Experience Journal

Effective communication between health professionals and patients is essential to patient safety and quality care. Primary care providers seeking specialist advice to manage patients’ conditions in the community has recently been adopted to improve timely access to specialty care and increase the efficacy of the referral process. To understand patients’ and family caregivers’ perceptions on doctor-to-doctor advice for non-urgent clinical questions and electronic referral communications with patients in Alberta, a mixed method online survey was conducted by Alberta Health Services’ Access Improvement team. A total of 1,422 patients and family caregivers living in Alberta were included in the quantitative and …

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 …

Exploring Peer Mentoring In Pediatric Transition: Perspectives Of Different Stakeholders About Accompanying Patients In Gastroenterology, Guillaume Dumais-Lévesque, Marie-Pascale Pomey

Patient Experience Journal

The literature identifies several issues in the pediatric transition, such as the lack of coordination between pediatric and adult settings and young patients who are not exercising independence in the self-management of their disease. The objective of this study is to explore the potential for a pediatric transition program in gastroenterology, introducing an accompanying patient program to support the transition. A qualitative case study was conducted, including semi-structured focus groups and individual interviews with each group involved in the pediatric transition between two centres in Quebec. A thematic analysis of the collected data was performed using QDA Miner v5.1. In …

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 …

Patient Experience In A Pediatric Emergency Department During Covid-19, Beth L. Emerson Md, Erika Setzer

Patient Experience Journal

The COVID-19 pandemic has changed many dynamics in healthcare in the United States. This study explores an increase in patient experience (PE) scores in a pediatric emergency department. Visits were analyzed before and after March 8, 2020, corresponding with the first local case of COVID-19. Changes in the patient population and characteristics of survey responders were analyzed. Overall, the number of daily visits decreased (113 vs 36/day) and survey response rate decreased (3.7 vs 2.8%, p = 0.03), but PE scores increased (87.21 to 93.73, p = 0.002). Comparatively, an increase in patients with higher acuity levels by Emergency Severity …

Is This Really Happening? Family-Centered Care During Covid-19: People Before Policy, Terri Savino, Karri Crispino

Patient Experience Journal

In the middle of a global pandemic, hospitals created policies for visitor restrictions to reduce the transmission of coronavirus to protect patients and staff and developed protocols allowing only one support person to call the critical care unit for patient updates. Late on a Tuesday afternoon, the Manager of Patient Experience received a phone call asking her to call Karri, the wife of one of our patients who was on a ventilator. Karri was struggling with updating her mother-in-law because she was very upset with the news she received, making it difficult to call her husband’s mom. Karri asked the …

Implementing Inter-Professional Patient-Family Centered Plan Of Care Meetings On An Inpatient Hospital Unit, Nicolas Hernandez, Alice Fornari, Sage Rose, Leanne Tortez

Patient Experience Journal

Inpatient plan of care meetings support efforts to encourage collaborative practice and patient-family centered care and result in an effective strategy to enhance communication and patient satisfaction. Clinical team members participated in patient/family centered plan of care meetings at a community hospital in a selected inpatient unit with full time hospitalist physicians. Quantitative data were gathered pre/post implementation from the external Hospital Consumer Assessment of Health Care Providers (HCAHPS) survey. HCAHPS data were collected independently, specifically for questions related to communication between patients, family members/guardians and the medical team and also the effects of care transition. There was a slow …

Finding Common Threads: How Patients, Physicians And Nurses Perceive The Patient Gown, Christy M. Lucas, Cheryl Dellasega

Patient Experience Journal

Evidence-based care is standard practice in medicine, but the patient gown has fallen outside the scope of scholarly research. The current gown renders a patient vulnerable, diminishing patients’ sense of identity, agency, and dignity with its one-size-fits-none design. The impact on providers is similarly neglected. Our objective was to explore how patients and providers derive meaning from patient gowns. A convenience sample at an academic medical center was interviewed utilizing a standardized framework developed by a medical student and two PhD-prepared researchers with experience in qualitative methods. The study was inductive in nature, seeking to understand perceptions of the patient …

Using Patient Experience In Optimizing The Total Knee Arthroplasty Patient Journey, Nienke Wolterbeek, Dieuwertje J. Hiemstra, Fiona A. Van Der Hoeven, Kiem G. Auw Yang

Patient Experience Journal

Information was used to improve the patient journey and to achieve patient-centered care. Patients (>18 years, purposive sampling) were interviewed once at one point of their total knee arthrosis journey within the hospital setting. Patients were accompanied and observed during their hospital visit by one of the 19 healthcare professionals which were trained as interviewers. A qualitative research approach with in-depth and semi-structured interviews using a standardized interview guide were used to gather an in-depth understanding of the perceptions of patients. Interviews were written out with the emphasis on positive and negative feedback, quotes and observations that were made. …

Refugees' Perceptions Of Primary Care: What Makes A Good Doctor's Visit?, Anne Mutitu, Bev Zabler, Jeana M. Holt

Patient Experience Journal

Redesigning primary care is a national priority, as the United States (US) struggles with issues of poor access, high cost, and suboptimal quality. Refugees are among the populations who suffer from America’s disjointed health care system, resulting in disproportionate health disparities. Although there are many studies on refugee health, few share refugees' perceptions of primary care. We asked local refugees who were seen for primary care services at a midwestern academic nurse-led clinic, what makes a good doctor's visit?  The clinic served as the hub of a federally funded refugee Community Centered Health Home (CCHH) pilot project. This qualitative study …

Is It Fair To Compare? A Patient And Family Experience Of Two Healthcare Systems And Neurosurgical Teams Within A Two-Week Period, Laura Miller Cpxp

Patient Experience Journal

As the mother of a 28-year-old son with cerebral palsy and hydrocephalus, and as a healthcare consultant focused on patient experience and professional development, I have a unique perspective and skill set. Recently he experienced symptoms that included an excruciating headache, neck pain and lethargy. Fearing his ventriculoperitoneal shunt had malfunctioned, he went to the emergency room and was later admitted on the neuro inpatient floor for a three-day hospitalization. His original shunt had been placed in 1991, and he never had an issue with until August 2018. While in the hospital, he was informed that he was no longer …

Awakening From A Medical Mystery: One Patient’S Experience Of Being Undiagnosed, Dwane Unruh

Patient Experience Journal

This personal narrative pleads for a supportive and comprehensive system or sub-system similar to that which exists for cancer patients, to deal with undiagnosed illnesses. By describing the torment of living with a debilitating illness that medicine could not easily recognize, then by contrasting this experience with my wife’s experience of the cancer care system, and by referring along the way to lessons learned many years ago from reading the works of the inciteful neurologist, Dr. Oliver Sacks, I hope to inspire the medical system to develop a separate, supportive and comprehensive system to deal with the undiagnosed. As it …

A Next-Day, Brief E-Survey Overcomes The Excessive Variability Seen In Cahps-Style Emergency Department Surveys So That Individual Physician Performance Can Be Assessed On A Regular Basis, Tom Scaletta, Eva Hare, Christopher Sung Lee

Patient Experience Journal

Traditional CAHPS-style emergency department (ED) surveys result in excessive variability when assessing individual physician performance. The objective of this study is to measure the variability of a brief, electronic survey (e-survey). The study team also measured the association of individual physicians to demographic data, physician and patient factors, and a physician burnout assessment tool. Data from SmartContact (SmartER, La Grange, IL) is a next-day, e-survey that takes about 30-seconds to complete. This tool was used by a hospital-employed emergency department (ED) group during calendar year 2017 across 2 EDs and 37 physicians.^1,2 Variability was estimated regarding raw patient experience …

Comparing Psychiatric Care Experiences Shared Online With Validated Questionnaires; Do They Include The Same Content?, Rebecca Baines, John Donovan, Samantha Regan De Bere, Julian Archer, Ray Jones

Patient Experience Journal

Patient feedback is considered integral to patient safety and quality of care. However, limited research has compared the content of validated questionnaires with subjective patient experiences shared online. The aim of this study was to therefore identify and compare the content of psychiatric care experiences shared online with validated questionnaires. All research was conducted in co-production with a volunteer mental-health-patient-research-partner. We analysed all reviews published on the United Kingdom’s leading health and social care feedback platform Care Opinion, between 2005-2017 that discussed adult psychiatric care and compared findings with two validated questionnaires (ACP360 and General Medical Council patient feedback questionnaire). …

Patient Perception Of Telephone Follow-Up After Resection For Colorectal Cancer: Is It Time For An Alternative To The Out-Patient Clinic?, Marcus Gilmartin, Nicholas Leaver, George Hall, Helena Fawdry, Seung Lee, James Nicholson, Ramya Kalaiselvan, Raj Rajaganeshan

Patient Experience Journal

The economic reality of modern healthcare provides a timely reminder to clinicians of their duty to provide outstanding and cost-effective care. Although multiple guidelines outline investigation, management and surveillance of colorectal cancer, none advocate a particular delivery method. Nurse-led telephone follow-up in multiple specialties has demonstrated equivalent clinical outcomes and patient satisfaction when compared to traditional outpatient department follow-up. This paper aims to compare nurse-led telephone and outpatient follow-up, following surgical resection of colorectal cancer (CRC), focusing on patient perceptions. This cross-sectional study distributed adapted patient satisfaction questionnaire (PS-Q 18) to patients undergoing surveillance following CRC resection via either nurse-led …

How Younger Adults With Psychosocial Problems Experienced Person-Centered Health Consultations, Line Soot, Kirsten S. Freund, Jørgen Lous, Mikkel Vass, Lotte Hvas

Patient Experience Journal

Much attention is focused on the social determinants of health. Family medicine is challenged with a growing number of vulnerable persons with psychosocial or lifestyle related problems. The objective of this work was to explore how vulnerable younger adults experience person-centered preventive health consultations with their general practitioner. The design and setting for this work were a secondary qualitative analysis of a randomized controlled trial (RCT) in Danish general practices. Younger adults (20-45) were consecutively invited to answer a screening questionnaire about psychosocial and lifestyle-related problems when visiting general practice (28 general practitioners (GPs)) for ordinary consultations. The 30% most …

The Perioperative Patient Experience Of Hand And Wrist Surgical Patients: An Exploratory Study Using Patient Journey Mapping, Else F. De Ridder, Tessa Dekkers, Jarry T. Porsius, Gerald Kraan, Marijke Melles

Patient Experience Journal

Patient-centred care is becoming more important in healthcare. The success of patient-centred care can be assessed by exploring the patient experience through a patient journey map. As the number of outpatient surgeries is increasing, it is important to reveal the specific characteristics of this type of surgery. The perioperative patient experience is considered very important for outpatient surgery, because all perioperative activities are condensed in one day. To investigate this experience, we performed a case study of hand and wrist surgery. Six teams of two industrial design engineering students interviewed 40 patients in total in two private and two public …

Patients Educating Health Care Providers On Lynch Syndrome, Kelsey Hennig, Barry Decoster, Rebecca Chu, Wendy Parker, Lisa Campo-Engelstein, Allison M. Burton-Chase

Patient Experience Journal

Objective: Lynch syndrome (LS) patients are at an elevated risk for early-onset cancers, including endometrial and colorectal (CRC). Prior research has shown a deficit in provider knowledge of LS, which may affect patient satisfaction and adherence to recommended screening and surveillance regimens. Studies suggest patients with LS may educate providers perceived as lacking LS knowledge; however, little is known about these interactions. The goal of this study is to assess patient-reported outcomes from clinical interactions where LS patients educate their providers.

Methods: Participants (n=55) were asked to complete an in-depth telephone interview.

Results: Out of 55 participants, …

Partnering With Pediatric Patients And Families In High Reliability To Identify And Reduce Preventable Safety Events, Julie Kirby, Courtney Cannon, Lynn Darrah, Yolanda Milliman-Richard

Patient Experience Journal

Frameworks for designing highly reliable behaviors and tools to reduce preventable harm are the result of the continued effort to improve patient safety in healthcare. Evidence shows that there has been limited research on engaging patients and families in the development of safety and reliability efforts to achieve zero harm. Our aim was to develop a tool that engages patients and families in an effort to reduce preventable harm in a pediatric academic medical center.

Original Parts: Aging And Reckoning With Cystic Fibrosis Related Kidney Disease, Alexandra Ch Nowakowski

Patient Experience Journal

Kidney disease increasingly impacts people with cystic fibrosis (CF) as adult patients continue to survive longer. Yet the literature on CF related kidney disease focuses little on amplifying the voices of people aging with the condition. This article presents perspectives on CF related kidney disease from a medical sociologist who is themselves managing these issues. It (1) gives an overview of relevant literature and trends in epidemiological data on kidney disease and CF, (2) details the author’s own process of adjusting to progressive changes in renal function, and (3) outlines opportunities for clinicians to make a positive impact for patients …

I’M Going To Tell You A Little About Myself: Illness Centrality, Self-Image And Identity In Cystic Fibrosis, Susan Horky Lcsw, Laura Sherman Licsw, Julie K. Polvinen Ba, Medhavi Saxena Md, Michael Rich Md

Patient Experience Journal

This study assessed the illness centrality of adolescents with CF and the specific ways that CF may affect adolescents’ identities, through the qualitative analysis of video narratives. Adolescents with CF were loaned video cameras and asked to “show us your life outside the hospital” and to “teach your healthcare team about your CF.” Four major themes were identified related to illness centrality: CF is Central, CF is Compartmentalized, CF is Integrated into Self Image, CF is Denied. Integration and compartmentalization often co-existed. Four themes emerged related to the role of CF in self-image and identity: (1) Valence (positive or negative); …

Turning A Blind Eye: How Lack Of Communication With Er Nurses Nearly Cost A Patient Permanent Vision Loss, Kenneth Royal, April Kedrowicz

Patient Experience Journal

This narrative presents a case in which a patient was treated for conjunctivitis, but a breakdown in several layers of communication (between the hospital and the patient, and between hospital personnel) resulted in multiple medical errors that nearly costs the patient permanent vision loss. This real-life case underscores how simple communication errors may lead to life-altering consequences. Recommendations for improving communication to ensure similar errors do not happen to others are provided.

When One Is Sick And Two Need Help: Caregivers’ Perspectives On The Negative Consequences Of Caring, Ilja Ormel, Susan Law, Courtney Abbott, Mark Yaffe, Marc Saint-Cyr, Kerry Kuluski, Debbie Josephson, Ann C. Macaulay

Patient Experience Journal

Informal or family caregivers contribute significantly to individual care, and to the Canadian healthcare system, yet receive limited support from governments, institutions, and healthcare professionals in recognition of their role, or in response to their health and social care needs – often due to the negative consequences of caregiving. Learning about the diversity of others’ experiences can positively influence personal decision-making, reduce feelings of isolation, as well as promote adjustment to a personal situation. For caregivers, however, few resources exist that provide reliable information on others’ experiences. We collected the narratives of caregivers’ experiences of caring for someone with a …

Patient Perspectives On Quality Family Planning Services In Underserved Areas, Debora Goldberg, Bhakthi Sahgal, Tishra Beeson, Susan F. Wood, Holly Mead, Aliyah Abdul-Wakil, Hallie Stevens, Pinyao Rui, Sara Rosenbaum

Patient Experience Journal

Ongoing challenges impede efforts to improve the quality of family planning services in underserved communities, which by definition lack sufficient numbers of physicians and other health professionals. Challenges to improving the quality of family planning services include financing difficulties, lack of standards, training deficiencies, as well as little understanding and attention to patient preferences. The objectives of this study were to explore female patients’ preferences for family planning services in underserved areas and to develop a framework to help providers improve patient-centered care. The methodology for this paper included mixed methods research including a survey of women between the ages …