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Health Services Research

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2019

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Full-Text Articles in Medicine and Health Sciences

See One, Do One, Teach One: Advanced Perioperative Nursing Practice In Australia, Jed Duff Dec 2019

See One, Do One, Teach One: Advanced Perioperative Nursing Practice In Australia, Jed Duff

Journal of Perioperative Nursing

No abstract provided.


Cloth Hats: (W)Hat’S The Issue, Elizabeth Mckenna Dec 2019

Cloth Hats: (W)Hat’S The Issue, Elizabeth Mckenna

Journal of Perioperative Nursing

Introduction

The aim of this discussion paper is to consider three issues regarding perioperative attire:

  1. whether cloth hats or disposable hats are better for reducing patient risk of acquiring a surgical site infection (SSI)
  2. whether the risk of infection is different for the bouffant style of hat compared to the skullcap style of hat
  3. whether there is enough evidence available to support a statement that cloth hats are safe to wear in the operating suite.

Background

Hats have been routinely worn in operating suites since the 1950s. The intention of covering the hair has been to reduce the risk of …


Ex Utero Intrapartum Treatment (Exit) Procedure: Indications And Procedural Considerations, Melissa Silva Dec 2019

Ex Utero Intrapartum Treatment (Exit) Procedure: Indications And Procedural Considerations, Melissa Silva

Journal of Perioperative Nursing

Problem identification

Ex Utero Intrapartum Treatment (EXIT) has become the optimal delivery strategy in fetuses with airway compromise; however, it remains an extremely rare procedure. This review aims to provide perioperative nurses with an overview of EXIT procedure to enable them to be an effective member of the multidisciplinary team.

Literature search

An electronic search of the CINAHL, Medline and Scopus databases was undertaken yielding 19 articles for inclusion in this integrative review. The papers included were case studies, case series or retrospectives and describe 42 EXIT procedures with 43 babies.

Data evaluation synthesis

The most common indication for the …


Supporting Paediatric Patients: Parental Presence In The Anaesthetic Journey, Salina Blake Dec 2019

Supporting Paediatric Patients: Parental Presence In The Anaesthetic Journey, Salina Blake

Journal of Perioperative Nursing

Objective

This discussion paper explores the use of parental presence during induction of anaesthesia as a method of decreasing paediatric and parental perioperative anxiety.

Setting

A perioperative department in an Australian public hospital.

Subjects

Paediatric patients and parents/guardians.

Primary argument

There is evidence to support the importance of parental presence in the anaesthetic setting; however, this varies between different health care facilities. This paper will argue that the presence of the parent during induction of anaesthesia will decrease the anxiety of the child. However, there has been little discussion about the pivotal role parents can play when participating in the …


Healthy Older Adults’ Motivation And Knowledge Related To Food And Meals, Kai Victor Hansen Nov 2019

Healthy Older Adults’ Motivation And Knowledge Related To Food And Meals, Kai Victor Hansen

The Qualitative Report

The population over 60 years old is growing rapidly in Norway and in many other countries, and researchers often focus on elderly people and various diseases. This article examines the healthy elderly who are active in their daily lives to understand their motivation and knowledge about food and meals. The method used was CurroCus® group interviews, or fast focus groups. Nine CurroCus® groups were conducted, lasting for 37 to 56 minutes (average = 45 minutes). Altogether, 76 persons participated, ranging in age from 60 to 87 years; participants were predominantly female (>80%). The article discusses two areas: motivation and …


Seven Steps To Successful Change: How A Large Academic Medical Center Prepared Patients For Organizational Change, Brian Carlson, Madison Agee, Terrell Smith, Paul Sternberg Jr, Jason Morgan Nov 2019

Seven Steps To Successful Change: How A Large Academic Medical Center Prepared Patients For Organizational Change, Brian Carlson, Madison Agee, Terrell Smith, Paul Sternberg Jr, Jason Morgan

Patient Experience Journal

Vanderbilt University Medical Center (VUMC) launched a new electronic health record (EHR) in a “big bang” implementation that saw the new software go live across multiple hospitals, clinics and geographic locations in a single morning. The organization rightly focused most of its energy on preparing its nearly 25,000 employees for the impacts of the transition, but it also considered the effects that would be felt by its patients and families. Survey data indicate that patient satisfaction scores demonstrably dip before, during and after an EHR implementation, and take approximately a year to recover. A team at DMC employed a seven-step …


Are You My Doctor? Utilizing Personalized Provider Cards To Improve Patient/Doctor Connections, Jessica Colyer, Tina Halley, Melissa Winter, Jennifer Coldren, Martha Parra Nov 2019

Are You My Doctor? Utilizing Personalized Provider Cards To Improve Patient/Doctor Connections, Jessica Colyer, Tina Halley, Melissa Winter, Jennifer Coldren, Martha Parra

Patient Experience Journal

In the setting of large, multidisciplinary medical care teams, it can be difficult for patients and families to identify their primary providers in the inpatient hospital setting. A review of our institutional patient satisfaction scores reflected a low rating with respect to families identifying their provider. We sought to improve patient and family connections with front line providers using personalized provider cards. We developed trading cards with pictures and biographies of the doctors on each card as well as an explanation of provider roles. The cards were piloted on a single inpatient unit without trainees. We had great provider engagement …


Effect Of Change In The Cg Cahps Survey Instrument Recall Period On Patient Experience Scores On Healthcare Utilization, Kimberley Marshall-Aiyelawo Phd, Usn, Msc (Ret), Richard Bannick Phd, Usaf, Msc (Ret), Sharon Beamer Aud, Melissa Gliner Phd, Terry Mcdavid Ms, Daniel Muraida Phd, Janice Ellison Usaf Nursing Services (Ret), Beatrice Abiero Phd, Alan Roshwalb Phd, Mark Andrews Nov 2019

Effect Of Change In The Cg Cahps Survey Instrument Recall Period On Patient Experience Scores On Healthcare Utilization, Kimberley Marshall-Aiyelawo Phd, Usn, Msc (Ret), Richard Bannick Phd, Usaf, Msc (Ret), Sharon Beamer Aud, Melissa Gliner Phd, Terry Mcdavid Ms, Daniel Muraida Phd, Janice Ellison Usaf Nursing Services (Ret), Beatrice Abiero Phd, Alan Roshwalb Phd, Mark Andrews

Patient Experience Journal

Standardized patient experience survey instruments play an important role in informing healthcare quality and process improvement. However, any changes in standardized instruments can impact the interpretation, trending, and analysis of patient reported data. This study investigates how the change in Clinician and Group Consumer Assessment of Healthcare Providers and Systems (CG CAHPS) survey recall period, from 12- to 6-months, can impact the accuracy and quality of patient experience data. This study used primary survey data on patient experience collected in 2016. Analyses included tests of proportion and t-tests for a comparison of: 1) experience ratings, and 2) administrative data to …


Volunteer Contributions In The Emergency Department: A Scoping Review, Sophie Glanz, Brittany Ellis, Shelley L. Mcleod, Cameron Thompson, Don Melady, Michelle Nelson Nov 2019

Volunteer Contributions In The Emergency Department: A Scoping Review, Sophie Glanz, Brittany Ellis, Shelley L. Mcleod, Cameron Thompson, Don Melady, Michelle Nelson

Patient Experience Journal

The objective of this scoping review was to identify published and unpublished reports that described volunteer programs in the emergency department (ED) and determine how these programs impacted patient experiences or outcomes. Electronic searches of Medline, EMBASE, Cochrane Central Register of Controlled Trials, Cochrane Database of Systematic Reviews and CINAHL were conducted and reference lists were hand-searched. A grey literature search was also conducted. Two reviewers independently screened titles and abstracts, reviewed full text articles, and extracted data. The search strategy yielded 4,589 potentially relevant citations; 87 reports were included in the review. Volunteer activities were categorized as non-clinical tasks …


Enhancing Emergency Care Environments: Supporting Suicidal Distress And Self-Harm Presentations Through Environmental Safeguards And The Built Environment, Stephanie Liddicoat Nov 2019

Enhancing Emergency Care Environments: Supporting Suicidal Distress And Self-Harm Presentations Through Environmental Safeguards And The Built Environment, Stephanie Liddicoat

Patient Experience Journal

Self-harming and suicidal distress are prevalent, worldwide healthcare issues. Existing literature explains that both self-harm and suicidal presentations at Emergency Departments are increasingly occurring, correlating to high costs in healthcare service delivery. This scoping review aimed to (1) identify the current body of literature which examined the relationship between design practice and service user experiences within Emergency Departments for self-harm and suicidal distress presentations, and (2) identify the ways in which the built environment could increase the efficacy of therapeutic efforts through improving service user outcomes and experiences. This scoping review established that there was a paucity of research at …


Conceptual Frameworks And Degrees Of Patient Engagement In The Planning And Designing Of Health Services: A Scoping Review Of Qualitative Studies, Umair Majid, Anna Gagliardi Nov 2019

Conceptual Frameworks And Degrees Of Patient Engagement In The Planning And Designing Of Health Services: A Scoping Review Of Qualitative Studies, Umair Majid, Anna Gagliardi

Patient Experience Journal

Increasingly, patients are being recognized as essential partners in the solutions to healthcare system problems. Patient engagement has been referred to as the “holy grail” and next “blockbuster drug” of health care because it may be revolutionary for transforming the design, delivery, and responsiveness of health services. Patients engage in a variety of healthcare activities, and there are multiple frameworks that depict the degrees of patient engagement in these activities. The literature also uses a variety of terms and concepts to depict the degrees of patient engagement. Moreover, meaningful patient engagement is a concept widely utilized in the literature without …


Patient-Initiated Second Opinions During Acute Hospital Care, Roni Gagin, Neta Hagani, Esti Zigelboim, Shiri Shinan-Altman Nov 2019

Patient-Initiated Second Opinions During Acute Hospital Care, Roni Gagin, Neta Hagani, Esti Zigelboim, Shiri Shinan-Altman

Patient Experience Journal

Second opinions are used in medicine in order to make better-informed decisions. Only a few studies have examined patient-initiated second opinions, and even fewer have examined it in the context of acute hospitalization. It is not clear whether patients and families are aware of this right and how often they exercise it during acute hospitalization. The objective of this paper is to identify factors associated with the awareness and utilization of patient-initiated second opinions. A survey was conducted among 92 neurosurgical patients who completed a questionnaire that included information regarding: awareness of second opinion consultations, reasons for not seeking a …


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 Nov 2019

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. …


Service User Interview Panels For Recruitment To Uk Child And Adolescent Mental Health Services: A Questionnaire Study Exploring The Experiences Of Young People, Staff And Candidates, Sophie M. Allan Ms, Emma Travers-Hill Dr Nov 2019

Service User Interview Panels For Recruitment To Uk Child And Adolescent Mental Health Services: A Questionnaire Study Exploring The Experiences Of Young People, Staff And Candidates, Sophie M. Allan Ms, Emma Travers-Hill Dr

Patient Experience Journal

Service user involvement is increasingly important in health and social care policy, including in Child and Adolescent Mental Health Services (CAMHS), but evidence evaluating involvement initiatives is lacking. This questionnaire study evaluated the use of young people’s (YP) interview panels in the recruitment of CAMHS staff, from the perspectives of YP, candidates and members of the staff interview panels. Self-report questionnaires were administered to YP, candidates and staff interview panel. This included quantitative and qualitative “free text” responses. YP’s panels were found to be important in hearing the voices of YP; participants all stated they would like YP to take …


From Diagnosis To Routine Care In Type 1 Diabetes In Children: Parents’ Experiences, Géraldine Heilporn, Maude Laberge, André Côté, Monia Rekik Nov 2019

From Diagnosis To Routine Care In Type 1 Diabetes In Children: Parents’ Experiences, Géraldine Heilporn, Maude Laberge, André Côté, Monia Rekik

Patient Experience Journal

Having a child who lives with a Type 1 Diabetes (T1D) can represent a high burden for parents. The objective of our study is to identify and analyze the main challenges expressed by parents so that health care services better meet the needs of parents of T1D children. Semi-structured interviews were conducted with parents of 19 T1D children regarding detection and diagnosis, initial management at the hospital, post-discharge adaptation including daycare or school reintegration, and long-term T1D monitoring. Data analysis was performed following an inductive approach. The results showed a lack of knowledge regarding T1D in the society, especially for …


Refugees' Perceptions Of Primary Care: What Makes A Good Doctor's Visit?, Anne Mutitu, Bev Zabler, Jeana M. Holt Nov 2019

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 …


Engaging Under- And/Or Never-Engaged Populations In Health Services: A Systematic Review, Lesley Moody, Erica Bridge, Vidhi Thakkar, Naomi Peek, Tanvi Patel, Suman Dhanju, Simron Singh Nov 2019

Engaging Under- And/Or Never-Engaged Populations In Health Services: A Systematic Review, Lesley Moody, Erica Bridge, Vidhi Thakkar, Naomi Peek, Tanvi Patel, Suman Dhanju, Simron Singh

Patient Experience Journal

Patient engagement is a mechanism used to facilitate person-centred care, however, has not been realized in all patient populations. Often, many marginalized populations still remain under- and/or never-engaged. The purpose of this systematic review was to: 1) identify methods or interventions that have been used to engage under- and/or never-engaged populations in health services and 2) identify outcomes that are associated with engaging under- and/or never-engaged populations in health services. A comprehensive search using the Ovid MEDLINE, EMBASE and CINAHL databases was conducted to examine literature between January 2002 and January 2015. Twenty-nine studies met the inclusion criteria. Data was …


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 Nov 2019

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 …


The Future Of Patient Experience: Five Thoughts On Where We Must Go From Here, Jason A. Wolf Phd, Cpxp Nov 2019

The Future Of Patient Experience: Five Thoughts On Where We Must Go From Here, Jason A. Wolf Phd, Cpxp

Patient Experience Journal

In looking to the future, we must never forget it is grounded in today and the steps that brought us to this point. Those efforts and actions that led to where we stand now set the foundation for all we can do and what we will accomplish as we look to the future. This idea of not looking too far ahead without knowing where you stand is fundamental in human nature. Far too often we have let our gaze to the future miss the people right in front of us or overlook the significance of the moment in which we …


Factors Influencing Family Burden In Pediatric Hematology/Oncology Encounters, Hannah R. Abrams, Hayden S. Leeds, Heidi V. Russell, Melody B. Hellsten Oct 2019

Factors Influencing Family Burden In Pediatric Hematology/Oncology Encounters, Hannah R. Abrams, Hayden S. Leeds, Heidi V. Russell, Melody B. Hellsten

Journal of Patient-Centered Research and Reviews

Purpose: Caring for a child with cancer or hematologic disease places unique stress on a family unit. Families’ subjective experience of this care-related burden mediates the relationship between cost and health-related outcomes. While financial costs are well described for families of pediatric hematology/oncology patients, it is unclear how cost and other factors each contribute to families’ overall experience of care-related burden. This study identifies and groups the challenges that families report and describes their association with overall reported burden.

Methods: This mixed-methods analysis of a cross-sectional single-center study was conducted via structured, self-administered questionnaire provided to inpatient and outpatient caregivers …


The Trusted Source Of Knowledge For Australian Perioperative Nurses, Jed Duff Sep 2019

The Trusted Source Of Knowledge For Australian Perioperative Nurses, Jed Duff

Journal of Perioperative Nursing

No abstract provided.


Creating And Applying Shared Mental Models In The Operating Room, Alister Wilson Sep 2019

Creating And Applying Shared Mental Models In The Operating Room, Alister Wilson

Journal of Perioperative Nursing

A shared mental model is a concept from high reliability environments, like aviation, to help teams develop collective understanding of how they will work together to safely accomplish their goals. Areas of high-risk health care like the operating room have adapted this concept to improve interdisciplinary teamwork and thus improve patient outcomes. Non-technical skills including communication, situational awareness, task management and leadership are employed to produce a functional shared mental model. Nurses play an important role in the change process as traditional hierarchical cultures, differing communication styles between doctors and nurses and an increasingly transient workforce are all challenges to …


The Patient, Case, Individual And Environmental Factors That Impact On The Surgical Count Process: An Integrative Review, Victoria Ruth Warwick, Brigid M. Gillespie, Anne Mcmurray, Karen G. Clark-Burg Sep 2019

The Patient, Case, Individual And Environmental Factors That Impact On The Surgical Count Process: An Integrative Review, Victoria Ruth Warwick, Brigid M. Gillespie, Anne Mcmurray, Karen G. Clark-Burg

Journal of Perioperative Nursing

Problem identification

The surgical count is an integral component of the perioperative nurse’s role designed to reduce the risk of unintentional retained items (URIs) during surgery. Current literature provides statistical data that URIs continue to occur which has exposed a lack of adherence to the surgical count process as a possible contributing factor. This review was undertaken to identify what is currently known about perioperative nurses’ practices in relation to the surgical count and the perceived barriers and enablers when trying to follow best practice as outlined in ACORN’s Standards for Perioperative Nursing in Australia.

Literature search

The objective …


Refining Guidelines For The Care Of Paediatric Perioperative Patients In A Rural Health Care Facility, Michelle Hibberson Sep 2019

Refining Guidelines For The Care Of Paediatric Perioperative Patients In A Rural Health Care Facility, Michelle Hibberson

Journal of Perioperative Nursing

No abstract provided.


House Calls Are Reaching The Tipping Point — Now We Need The Workforce, Thomas Cornwell Jul 2019

House Calls Are Reaching The Tipping Point — Now We Need The Workforce, Thomas Cornwell

Journal of Patient-Centered Research and Reviews

Home-based primary care (HBPC) improves the lives of high-cost, frail, homebound patients and their caregivers while reducing costs by keeping patients at home and reducing the use of hospitals and nursing homes. Several forces are behind the resurgence of HBPC, including the rapidly aging population, advancements in portable medical technology, evidence showing the value of HBPC, and improved payments for HBPC. There are 2 million to 4 million patients who could benefit from HBPC, but only 12% are receiving it. The number of these patients is expected to double over the next two decades. This requires a larger and better …


Measuring Patients’ Perceptions Of Health Care Encounters: Examining The Factor Structure Of The Revised Patient Perception Of Patient-Centeredness (Pppc-R) Questionnaire, Bridget L. Ryan, Judith Belle Brown, Paul F. Tremblay, Moira Stewart Jul 2019

Measuring Patients’ Perceptions Of Health Care Encounters: Examining The Factor Structure Of The Revised Patient Perception Of Patient-Centeredness (Pppc-R) Questionnaire, Bridget L. Ryan, Judith Belle Brown, Paul F. Tremblay, Moira Stewart

Journal of Patient-Centered Research and Reviews

Purpose: Given the ongoing desire to make health care more patient-centered and growing evidence supporting the provision of patient-centered care, it is important to have valid tools for measuring patient-centered care. The patient-centered clinical method (PCCM) is a conceptual framework for providing patient-centered care. A revision to the PCCM framework led to a corresponding need to enhance the Patient Perception of Patient-Centeredness (PPPC) questionnaire. The original PPPC was aligned with the components of the PCCM conceptual framework and developed to measure patient-centeredness from the patient’s perspective. The purpose of this study was to examine the factor structure of a revised …


Celebrating A Quarter-Century Of Public Domain Research: 25th Annual Conference Of The Health Care Systems Research Network, Sarah M. Greene, Carolyn A. Taylor, Suma Vupputuri Jul 2019

Celebrating A Quarter-Century Of Public Domain Research: 25th Annual Conference Of The Health Care Systems Research Network, Sarah M. Greene, Carolyn A. Taylor, Suma Vupputuri

Journal of Patient-Centered Research and Reviews

The 25th annual conference of the Health Care Systems Research Network (HCSRN) was held April 10–12 in Portland, Oregon, attracting 420 attendees. The HCSRN, a consortium of 18 community-based research organizations embedded in or affiliated with large health care delivery systems, has hosted annual research conferences since 1994. The primary objective of the conference is to convene researchers, project staff, funders, and other stakeholders to share latest scientific findings and cultivate new partnerships among research teams, patients, and clinicians. Collaboration is the cornerstone of the HCSRN’s success; the conference serves as a catalyst for a variety of collaborative ventures as …


Call For Submissions Special Issue - July 2020: Patient & Family Experience In Behavioral Health, Patient Experience Journal Jul 2019

Call For Submissions Special Issue - July 2020: Patient & Family Experience In Behavioral Health, Patient Experience Journal

Patient Experience Journal

Patient Experience Journal (PXJ) is excited to announce the call for submissions for its July 2020 special issue on the topic of patient & family experience in behavioral health. With a continued focus on the critical role of behavioral health in society today and a growing recognition of the importance of experience for those in behavioral health settings, a conversation on the practices in place and the identification of evidence of efforts leading to positive outcomes will be essential expanding the experience conversation in this setting. This special issue is open to all authors conducting cutting-edge research, implementing innovative practices …


“Anyone Can Co-Design?”: A Case Study Synthesis Of Six Experience-Based Co-Design (Ebcd) Projects For Healthcare Systems Improvement In New South Wales, Australia, Tara L. Dimopoulos-Bick, Claire O'Connor, Jane Montgomery, Tracey Szanto, Marion Fisher, Violeta Sutherland, Helen Baines, Phillip Orcher, John Stubbs, Lynne Maher, Raj Verma, Victoria J. Palmer Jul 2019

“Anyone Can Co-Design?”: A Case Study Synthesis Of Six Experience-Based Co-Design (Ebcd) Projects For Healthcare Systems Improvement In New South Wales, Australia, Tara L. Dimopoulos-Bick, Claire O'Connor, Jane Montgomery, Tracey Szanto, Marion Fisher, Violeta Sutherland, Helen Baines, Phillip Orcher, John Stubbs, Lynne Maher, Raj Verma, Victoria J. Palmer

Patient Experience Journal

Experience-based co-design (EBCD) is a quality improvement approach that is being used internationally to bring service users and health professionals together to improve healthcare experiences, systems and processes. Early evaluations and case studies of EBCD have shown promise in terms of improvements to experience and organisational processes, however challenges remain in participation around shared power and decision making, mobilisation for implementation, sustainment of improvements and measurement of outcomes. The objective of this case study was to explore the emergent issues in EBCD participation and implementation in six quality improvement projects conducted in mental health, rehabilitation, blood and bone marrow transplant, …


Engagement Of Patients With Scleroderma To Revise An Internet Self-Management Program, Janet L. Poole, Sharon L. Newbill, Jennifer Serrano, Dana Rosson, Josephine Battyany, Laura Dyas, Luke Evnin, Dennis W. Raisch, Cynthia Maxwell, Mary Alore, Saville Kellner, Pedro Cuencas, Richard M. Silver, Dinesh Khanna Jul 2019

Engagement Of Patients With Scleroderma To Revise An Internet Self-Management Program, Janet L. Poole, Sharon L. Newbill, Jennifer Serrano, Dana Rosson, Josephine Battyany, Laura Dyas, Luke Evnin, Dennis W. Raisch, Cynthia Maxwell, Mary Alore, Saville Kellner, Pedro Cuencas, Richard M. Silver, Dinesh Khanna

Patient Experience Journal

Systemic sclerosis (SSc) or scleroderma is a rare connective tissue disease. Many people do not have access to education programs. A self-management program was developed several years ago based on the literature and input from people with SSc. However, new therapies and treatment options have been developed since the program was developed. The purpose of this qualitative study was to identify and remedy gaps in an internet SSc self-management program to improve the quality of critical information relevant to effective management of the disease. Six focus groups with 30 participants with SSc were conducted: 2 telephone groups and 4 face-to-face …