Social and Behavioral Sciences Commons^™

Randomized Clinical Trial Comparing Perioperative Care For Breast Cancer Patients At A Patient Hotel Versus A General Surgical Ward, Madleen Anna Camilla Huzell, Johan Frisack, Kristina Dalberg

Patient Experience Journal

Breast cancer is the most frequent cancer among women in Europe and the US. The aim of this study was to assess whether perioperative care, for breast cancer patients, provided at a patient hotel could be an alternative to the conventional care in an ordinary surgical ward. The study focuses solely on the patients’ experience of the provided care with a primary outcome that perioperative care at the patient hotel would be valued better than care in a general ward. Prospective, randomized single centre study. Between 2010 and 2012 a total of 151 patients < 80 years and without severe comorbidities were included in the trial, whereof 76 patients were randomised to the ward group and 75 patients to the hotel group. Five patients were excluded from each group. The validated IN2005-E questionnaire was used to evaluate the patients’ experiences of the care. The response rate was high with 65 patients answering the IN2005-E in each group. No difference could be found between the two groups regarding patient characteristics, type of surgery or tumour characteristics. The patients generally perceived the quality of the provided care as high. However, in the hotel group there was a better experience of care regarding issues such as coordination, privacy, some aspects of medical information, availability and the courtesy of the nurses. For selected patients, perioperative care at a patient hotel is an appreciated alternative to care at a surgical ward.

Patient Needs In Advanced Renal Cell Carcinoma: What Are Patients’ Priorities And How Well Are We Meeting Them?, Rick Harris, Kate Oake, Robert E. Hawkins, Robert J. Jones, Thomas Powles, David A. Montgomery

Patient Experience Journal

Treatment options and duration of therapy for patients with metastatic renal cell carcinoma (mRCC) have increased. Many patients now spend in excess of 2 years on active therapy. These patients’ needs, and the ability of health services to respond to them, are poorly understood. Ten patients living with mRCC for more than 2 years and treated with at least one targeted agent were selected at random from three hospitals in the United Kingdom (UK). One interviewer who was not involved in their care conducted in-depth interviews. Interview transcripts were analysed using Interpretative Phenomenological Analysis (IPA) to identify issues of greatest …

The Comparative Impact Of Different Patient-Centered Medical Home Domains On Satisfaction Among Individuals Living With Type Ii Diabetes, Jon Mills, Allyson Hall, Rebecca Tanner, Jeffrey Harman, David L. Wood, Charles Lorbeer

Patient Experience Journal

Chronic illnesses like type 2 diabetes are costly and difficult to treat. Patient-centered medical homes (PCMH) have the potential to improve patient satisfaction in this population. However, which domains have the most impact on patient satisfaction has not been established. The aim of this study was to assess the relative strength of association between seven PCMH domains and two measures of satisfaction. Cross-sectional data were used in this observational study collected from a random sample of adults aged 18-89 with type 2 diabetes (n=1301) seen at 4 PCMHs. The Ambulatory Care Experiences Survey instrument was used to assess all measures. …

A Vision For Using Online Portals For Surveillance Of Patient-Centered Communication In Cancer Care, Hardeep Singh, Neeraj K. Arora, Kathleen M. Mazor, Richard L. Street Jr

Patient Experience Journal

The Veterans Health Administration (VHA) is charged with providing high-quality health care, not only in terms of technical competence but also with regard to patient-centered care experiences. Patient-centered coordination of care and communication are especially important in cancer care, as deficiencies in these areas have been implicated in many cases of delayed cancer diagnosis and treatment. Additionally, because cancer care facilities are concentrated within the VHA system, geographical and system-level barriers may present prominent obstacles to quality care. Systematic assessment of patient-centered communication (PCC) may help identify both individual veterans who are at risk of suboptimal care and opportunities for …

Impact Of Hospital Characteristics On Patients’ Experience Of Hospital Care: Evidence From 14 States, 2009-2011, Emily M. Johnston, Kenton J. Johnston, Jaeyong Bae, Jason M. Hockenberry, Ariel C. Avgar, Arnold Milstein Md, Mph, Sandra S. Liu, Ira Wilson, Edmund Becker

Patient Experience Journal

This paper uses patient responses to the Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) survey for three years (2009-2011) from 1,333 acute-care hospitals in fourteen states to analyze patterns in 10 hospital-reported patient experience-of-care scores by 29 characteristics classified as: patient characteristics, payer source, patient severity, hospital characteristics, hospital operations, and market characteristics. We also evaluate how scores have changed over the three-year period. We find significant differences in patient experience-of-care scores by hospital characteristics for 250 out of 290 HCAHPS-hospital characteristic combinations measured. We find fewer significant differences in changes in scores from 2009-2011 (135 out of …

Improving Process And Enhancing Parent And Therapist Satisfaction Through A Coordinated Intake Approach, Sharla Piecowye, Devona Gibson, Janis Carscadden, Kayla Ueland, Gregory Wells, Scott Oddie

Patient Experience Journal

Recent research indicates that, in Canada, approximately one in five children entering school are not meeting age appropriate milestones in physical, social, language, or cognitive development. Even where support services are available families often face barriers in accessing these. With the goals of improving access to programs, reducing barriers and increasing consistency and efficiency, a new Coordinated Intake Approach (CIA) was developed for families accessing Children’s Rehabilitation Services. It was expected that the CIA would result in 1) parents finding the intake process more satisfactory and easier to complete, 2) therapists feeling more supported and satisfied and 3) a decrease …

The Patient Patient: The Importance Of Knowing Your Navigator, Sarah M. Wheeler Phd, Julie E. Gilbert Phd, Melissa Kaan Mba, Eric Klonikowski, Claire Mb Holloway Md Phd Frcsc

Patient Experience Journal

In Ontario, Diagnostic Assessment Programs (DAPs) have been implemented to improve the quality of care patients receive during the diagnostic phase of the cancer journey. Patient navigators play a critical role in this model by coordinating care and providing information and support to patients and their families. The objectives of this study were 1) to determine whether patient navigation in DAPs is associated with a better patient experience and 2) to examine whether patient navigation in DAPs modifies the effect of wait times and patient volumes on patient experience. Data reflecting patients’ experience within the DAP were collected via survey …

Instruments To Measure The Inpatient Hospital Experience: A Literature Review, Kelly J. Edwards, Kim Walker, Jed Duff

Patient Experience Journal

Healthcare professionals worldwide are increasingly broadening their focus to include the experiences of patients and their family members as a means of assessing quality patient centered care. This paper seeks to identify and discuss instruments specifically designed to measure the inpatient hospital experience. A literature search focusing on pre-identified instruments as per the Health Foundation’s Helping Measuring Patient Centered Care database of measurement instruments (de Silva, 2014) and additional health databases (CINAHL, ERIC, EBSCO, HaPI, MEDLINE, PubMed and Psych INFO) was undertaken. Thirteen relevant instruments and seventeen associated studies (regarding instrument development and or validation) were identified. These instruments provide …

Conceptualising Multiple Conditions In Australia: First Steps To Systemic Change To Meet The Needs Of People With Serious Long-Term Illnesses, Christine F. Walker

Patient Experience Journal

Since the 1970s greater numbers of people are now living with several serious long term illnesses. These include rarer genetic conditions and ‘lifestyle conditions’ as well as those of an idiopathic nature. This article examines the growing need for new terms and concepts that reflect the changes in the lives of people living with long-term serious illnesses.

Members of the Chronic Illness Alliance attended a workshop where they presented their experiences and views of living with multi-morbidities. Consumers were concerned about treatment side-effects, polypharmacy, adverse events and the need for coordinated care. Following this workshop, the Chronic Illness Alliance undertook …

Should I Stay Or Should I Go? Patient Understandings Of And Responses To Source-Isolation Practices, Mary Wyer, Rick Iedema, Christine Jorm, Gary Armstrong, Su-Yin Hor, Claire Hooker, Debra Jackson, Clarissa Hughes, Matthew V.N. O'Sullivan, Gwendolyn L. Gilbert

Patient Experience Journal

Isolation of patients, who are colonised or infected with a multidrug-resistant organism (source-isolation), is a common practice in most acute health-care settings, to prevent transmission to other patients. Efforts to improve the efficacy of source-isolation in hospitals focus on healthcare staff compliance with isolation precautions. In this article we examine patients’ awareness, understandings and observance of source-isolation practices and directives with a view to understanding better the roles patients play or could play in transmitting, or limiting transmission, of multidrug-resistant organisms (MRO). Seventeen source-isolated adult surgical patients and two relatives participated in video-reflexive ethnography and interviews. We learned that, although …

Patient Leadership: Taking Patient Experience To The Next Level?, David Mcnally, Steve Sharples, Georgina Craig, Dr Anita Goraya, Frcgp

Patient Experience Journal

NHS England commissioned the project described in this article to explore how patients and carers can, acting as leaders, make a real difference in improving experience of care. The work was carried out on a collaborative basis, co-designing the scope of the research with patient leaders and commissioners. We gathered case examples across England that had involved patient leaders in using patient and carer feedback to improve experience of care. A Patient Leaders Expert Advisory Group selected four case examples that were visited to undertake a more detailed study and subsequently discussed and agreed the key learning points and conclusions. …

The Critical Role Of Family In Patient Experience, Brian Boyle

Patient Experience Journal

In this commentary Brian Boyle raises a simple, yet critical point about the value of family in the care experience. He offers, “When you are focusing on the goals for the patient's recovery, the doctors work with the nurses, specialists, and patient’s family to decide on the appropriate care plan for the patient on both a short- and long-term basis. It is vital that this multi-disciplinary approach occurs during the formation of the care plan and is frequently updated as time goes on. The loved ones of a patient may not have a medical license or healthcare background, but their …

The State Of Patient Experience, Jason A. Wolf Phd

Patient Experience Journal

As the patient experience movement continues to flourish, there is greater alignment that experience encompasses all we do in healthcare – not simply a customer encounter, but how we engage people in mind, body and spirit, how we integrate the critical aspects of care from quality to safety to service and how we link the very complexities of our healthcare systems globally to provide for easy journeys for those receiving care. In sharing data from the latest study for The Beryl Institute on patient experience, the trends of this growing movement are seen as positive and a set of clear …

Book Review: Being Mortal: Illness, Medicine And What Matters In The End, Sue Sutton

Patient Experience Journal

In her review of Being Mortal: Illness, Medicine and What Matters in the End written by Atul Gawande, MD, Sue Sutton shares both the insights of Dr. Gawande and their important perspectives for person-centered experience. She reinforces that in this day of increased focus on understanding patient’s expectations and patient-focused care, Dr. Gawande compels us to learn how to have the difficult conversations about what really matters. She closes the review with a compelling quote from the author, "I never expected that among the most meaningful experiences I’d have as a doctor— and, really, as a human being— would come …

Variations In The Patients’ Hospital Care Experience By States’ Strategy For Medicaid Expansion: 2009-2013, Edmund Becker, Kenton Johnston Phd, Jaeyong Bae, Jason M. Hockenberry Phd, Ariel C. Avgar, Sandra Liu, Ira Wilson, Arnold Milstein Md, Mph

Patient Experience Journal

Our investigation evaluates the extent of differences in the patient’s hospital experience due to variations among state strategies to adopt, or not adopt, their Medicaid plans to the 2010 ACA legislation. Using ten HCAHPS measures, we analyze patient hospital experience data for the 2009 - 2013 period for all 50 states and the District of Columbia grouped by those states that (1) did not expand, (2) expanded Medicaid through Section 1115 waivers, (3) expanders early, and (4) expanded Medicaid concurrent with the new ACA legislation.

Our findings reveal that those states that opted out of Medicaid expansion typically started with …

Cancer Patients’ Experiences Of Error And Consequences During Diagnosis And Treatment, Henriette Lipczak, Liv H. Dørflinger, Christine Enevoldsen, Mette M. Vinter, Jeanne L. Knudsen

Patient Experience Journal

The study objective was to investigate patient experienced error during diagnosis and treatment of cancer. The design included a nationwide patient survey on quality and safety in Danish cancer care. Responses regarding patient experienced error were separately analyzed, quantitative responses using descriptive statistics and qualitative responses using systematic text analysis. Study participants included 6,720 adult patients with a first time diagnosis of cancer registered between May 1st and August 31st 2010. The patients received a questionnaire concerning their experiences of care received by general practitioners, specialist practitioners and at the hospital. A response rate of 65% was achieved. 10 – …

Considering Shared Power And Responsibility: Diabetic Patients’ Experience With The Pcmh Care Model, Olena Mazurenko Md, Phd, Sheila Bock Phd, Catherine Prato, Margarita Bondarenko

Patient Experience Journal

The patient-centered medical home (PCMH), an innovative primary care model that fosters a stronger, more personal patient-doctor relationship than traditional health care models, should be particularly well suited for the treatment of chronic conditions such as diabetes that require ongoing management by both patients and providers. Despite growing research on the effectiveness of PCMHs in diabetes care, relatively little attention has been given to diabetic patients’ experiences. This qualitative study examines diabetic patients’ experiences at one PCMH setting, using in-depth interviews to understand patients’ perspectives of the shared power and responsibility between patient and provider in their diabetes care. Our …

The Children’S Hospital Of Philadelphia Family Partners Program: Promoting Child And Family-Centered Care In Pediatrics, Amy Kratchman, Ba, Darlene Barkman, Ma, Kathy Conaboy, Ba, Anna De La Motte, Msed, Rachel Biblow, Msw, Katherine Bevans, Phd

Patient Experience Journal

Involving Family Advisory Councils in decisions that impact pediatric healthcare demonstrates hospitals’ commitment to child- and family-centered care. Yet, reliance on advisors as the sole source of family input has several limitations: infrequent meetings impedes the council’s capacity to address emerging concerns in a timely manner; feedback obtained from a small number of highly-engaged family members may not represent the perspectives of “typical” patients and families; advisors provide feedback in a reactive manner and are generally not equitably involved in problem identification or the initial development of solutions. In recognition of the need to strengthen and advance family partnerships, the …

So Much More Than A “Pair Of Brown Shoes”: Triumphs Of Patient And Other Stakeholder Engagement In Patient-Centered Outcomes Research, Amanda Brodt, M.P.P., Christine K. Norton, M.A., Amy Kratchman

Patient Experience Journal

This piece illustrates the “real world” experiences of patients and other stakeholder partners in research to help inform and inspire future patient-centered outcomes research (PCOR) efforts. The Patient-Centered Outcomes Research Institute (PCORI) was created in 2010 to fund research that helps patients, clinicians, and other healthcare stakeholders make informed health decisions. The first 50 funded PCORI Pilot Projects engaged patients, caregivers, parents, patient advocates, clinicians, and other non-traditional research stakeholders to serve in advisory and leadership positions on their research teams, many for the first time. In interviews with seven patients and other stakeholders, several lessons learned emerged, including how …

Patient Partnership In Quality Improvement Of Healthcare Services: Patients’ Inputs And Challenges Faced, Marie-Pascale Pomey, Hassiba Hihat, May Khalifa, Paule Lebel, André Néron, Vincent Dumez

Patient Experience Journal

This research focuses on the perception of patients who participated in Continuous Quality Improvement Committees (CIC) regarding their contribution, lessons learned, and challenges encountered. The committees are engaged in a care partnership approach where patients are recognized for their experiential knowledge and treated as full members of the clinical team. Based on patient interviews, we conclude that they bring a structured and thoughtful vision of their experience. They identify themselves as real partners in the care process and are grateful for the opportunity to improve the care provided to other patients by using their own experience and by bringing changes …

Meaningful And Effective Patient Engagement: What Matters Most To Stakeholders, Mandy Bellows, Katharina Kovacs Burns, Karen Jackson, Brae Surgeoner, Jennifer Gallivan

Patient Experience Journal

To determine what resources, preparation, and support are needed for patients, providers, and leaders to meaningfully and appropriately engage in patient-centred health system redesign, researchers sought to learn what really matters to these three stakeholder groups. A qualitative descriptive design was selected using purposive participant sampling, focusing on ‘who’, ‘what’ and ‘why’ questions pertaining to stakeholder perceptions about patient engagement in their specific context as patients, providers or leaders. Four project groups were selected; each group was responsible for a strategic initiative within Alberta Health Services and represented one of three different levels of the healthcare system (i.e. program, site …

The Power Of Patient Ownership: The Path From Engagement To Equity, Zal Press, Dawn Richards

Patient Experience Journal

Understanding patient engagement from the lens of a person who is suffering, who is in pain and anguish, who is wracked with fear of the impact of this pain on their body, their family, their career, and their mortality, is a complex undertaking. The authors provide an important patient perspective in acknowledging and highlighting efforts to shift the conversation on experience from one about patients and families to one with patients and families. They challenge us to consider the power that can be found in creating ownership for patients and suggest it may be the one true path to moving …

Patient Experience Established: One Year Later, Geoffrey A. Silvera, Jason A. Wolf Phd

Patient Experience Journal

Scholars and administrators have long dedicated themselves to centering healthcare conversations and debates on the experiences of patients and their families. Patient experience advocates view these experiences as critical to evaluations of healthcare quality. There have been a great multitude of important contributions, yet, for decades, these calls for patient-centric care experiences and healthcare systems have been confined to the fringes of disparate health policy and reform debates. This bygone reality created a diaspora of scholars and administrators dedicated to understanding, evaluating, and improving the patient experience. This article begins to explore a coalescing around patient experience research efforts citing …

The Patient Experience Movement Moves On, Jason A. Wolf Phd

Patient Experience Journal

As we present Volume 2 of Patient Experience Journal (PXJ) we both recognize the contributions that helped launch this publication and acknowledge the work that helped build the foundation of the broader research exploration in the emerging field of patient experience. On this base of knowledge we have worked to establish a new home for expanding the exploration of new ideas and practices through this publication. The importance of building, supporting and sustaining an outlet for research in patient experience is grounded in the belief that positive patient experience is good for healthcare, it is good for the people who …