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Journal of Patient Experience

Chka Fernando, S Mendis, A P Upasena, Y J Costa, H S Williams, D Moratuwagama
Introduction: Splenic syndrome is a rare presentation of sickle cell disease. It is important to rule out this possibility when an ethnically vulnerable patient presents with an acute abdominal symptoms in a background of precipitating events. Case Report: A 26-year-old man who developed a severe abdominal pain at high altitude, found to have a tender splenomegaly. However, further inquiry revealed he is from an area where sickle cell disease is prevalent. Screening for sickle cell disease was positive...
June 2018: Journal of Patient Experience
Cheryl D Stults, Alison S Baskin, M Kate Bundorf, Ming Tai-Seale
Introduction: Medicare beneficiaries often report that the process of choosing a prescription drug plan is frustrating and confusing and many do not enroll in the plan that covers their drugs at the lowest cost. Methods: We conducted 4 focus groups to understand beneficiaries' experiences in selecting a drug plan to identify what resources and factors were most important to them. Participants were patients served by a multispecialty delivery system and were primarily affluent and Caucasian...
June 2018: Journal of Patient Experience
Silvia Potì, Francesca Emiliani, Laura Palareti
Diabetes mellitus type 1 is a chronic illness that has its onset in childhood or adolescence. It is determined by the insufficient production of insulin. The main therapies consist of replacement of the lacking insulin, diet, exercise, and glycemic control. If treatment is managed by parents in childhood, adherence seems to be a difficult issue during adolescence. In order to understand the subjective experience of the illness and treatment, the present study aims to investigate the patients' subjective perspective by addressing a group of adolescents and young adults in pediatric care...
June 2018: Journal of Patient Experience
Lauren Nicholas, Rebecca Fischbein, Lynn Falletta, Kristin Baughman
Objective: The aim of this study was to assess patient experiences when reporting symptoms of twin-twin transfusion syndrome (TTTS) to their health-care providers. Methodology: The study utilized an online, retrospective survey of women, over the age of 18, who were living in the United States at the time of their pregnancy and had completed a TTTS pregnancy. Results: Three hundred sixty-seven cases were included for analysis. Nearly half of the respondents (45...
June 2018: Journal of Patient Experience
Bhanu Ramaswamy, Christian Johnson
Evidence endorses the benefits of more vigorous exercise for people with Parkinson's, particularly following diagnosis, yet is not clear which style is optimal. The authors share perspectives and decisions made as a physiotherapist (assisted by a sports and exercise science student) and a novice runner with Parkinson's in his late 50s, respectively. The exercise goal chosen by the runner (the case report participant) to minimize the degenerative effects of the progressive condition was to complete a marathon...
June 2018: Journal of Patient Experience
Corinne R Boudreau, Vett K Lloyd, Odette N Gould
Objective: We aimed to describe the experiences of Canadians who seek diagnosis and treatment for Lyme disease outside of the conventional Canadian health-care system. Methods: Forty-five individuals who had sought treatment for Lyme disease outside of the conventional Canadian health-care system were recruited from Lyme support and advocacy groups across Canada to answer open-ended questions about their experiences. Results: Respondents sought treatment outside of the conventional medical system due to extensive diagnostic procedures and treatments that did not resolve symptoms...
June 2018: Journal of Patient Experience
Saka S Ajibola, Fajemirokun O Timothy
Purpose: Medication adherence (MA) is a challenge among patients with chronic diseases worldwide. Little has been reported on the influence of National Health Insurance Scheme (NHIS) on MA among diabetic patients in Nigeria. Objective: To assess the influence of NHIS on MA among outpatient type 2 diabetics in 2 public secondary health facilities in Southwest Nigeria. Method: A cross-sectional study involving 110 consecutively selected outpatient type 2 diabetics (insured, n = 42; uninsured, n = 68) was carried out...
June 2018: Journal of Patient Experience
Anaïs Tuepker, Summer Newell, Christina Nicolaidis, Marie-Elena Reyes, Maria Carolina González-Prats, Eleni Skaperdas, Devan Kansagara
Background: The Veterans Health Administration (VA) has implemented the largest shift to a patient-centered medical home (PCMH) model of care in the United States to date. Objective: We interviewed veterans about their experiences of primary care to understand whether they observed changes in care during this period as well as to learn which characteristics of care mattered most to their experiences. Method: Qualitative interviews were conducted with 32 veterans receiving primary care at 1 of 8 VA clinics in the northwest United States...
June 2018: Journal of Patient Experience
Jonathan D Sonis, Emily L Aaronson, Rebecca Y Lee, Lisa L Philpotts, Benjamin A White
Introduction: Patient experience with emergency department (ED) care is an expanding area of focus, and recent literature has demonstrated strong correlation between patient experience and meeting several ED and hospital goals. The objective of this study was to perform a systematic review of existing literature to identify specific factors most commonly identified as influencing ED patient experience. Methods: A literature search was performed, and articles were included if published in peer-reviewed journals, primarily focused on ED patient experience, employed observational or interventional methodology, and were available in English...
June 2018: Journal of Patient Experience
Katrina A Bramstedt
Introduction: Most solid organ transplantation is viewed as lifesaving, whereas vascularized composite allotransplantation (VCA) has been viewed as life enhancing. This article challenges the latter and argues that "social death" evident in severe face, hand, and larynx disfigurement can be potentially treated via VCA. Social death (from a social science perspective) consists of a combination of 7 components: social isolation, loneliness, ostracism, loss of personhood, change of role and identity, harm, and disfigurement...
June 2018: Journal of patient experience
Janet Page-Reeves, Lidia Regino, Hannah Cole McGrew, Maria Tellez, Blanca Pedigo, Amy Overby, Abigail Cunningham, Susan Tigert, Mark Burge
Including patient stakeholders as active members of the research team is essential to a patient-engaged research design. To hire community-based research staff for a study comparing the effectiveness of diabetes self-management programs for Latinos, we had to provide phlebotomy training which was not allowed under the fiscal guidelines of our funders. By collaborating with partners at the Clinical and Translational Science Center, we were not only able to find a creative solution and provide phlebotomy training to our research staff but the process of creating the training also contributed to improved infrastructure for patient-engaged research at our institution...
June 2018: Journal of Patient Experience
Joy L Lee, Sydney M Dy, Ayse P Gurses, Julia M Kim, Catalina Suarez-Cuervo, Zackary D Berger, Rachel Brown, Yan Xiao
No abstract text is available yet for this article.
June 2018: Journal of Patient Experience
Georgia Michalopoulou, Sherylyn Briller, Kimberly Compton Katzer, Kaitlin C Muklewicz, Julia Wasiluk, Beverly Crider, Stephanie Myers-Schim, Elizabeth Secord
Family-centered care (FCC) is vital for children with special health-care needs and serious chronic illnesses. Family-clinician collaboration and partnership formation are key FCC elements associated with improved health outcomes. However, FCC implementation barriers persist. Although some ethnographic research examines how FCC principles align with practice in inpatient settings, more studies are needed in outpatient specialty clinics. Using an FCC-oriented research team (clinicians, social science researchers, and families) blended multidisciplinary clinical knowledge and family/patient expertise with chronic illness...
June 2018: Journal of Patient Experience
Adrienne Boissy
No abstract text is available yet for this article.
June 2018: Journal of Patient Experience
Richard Bruce Hovey
No abstract text is available yet for this article.
March 2018: Journal of Patient Experience
Clare C Luz, Katherine V Hanson, Yuning Hao, Elizabeth Spurgeon
Introduction: The rapidly aging US population is resulting in major challenges including delivering quality care at lower costs in the face of a critical health-care workforce shortage. The movement toward home care has dramatically increased the need for qualified, paid personal care aides (PCAs). Adequate PCA training that focuses on skills for person-centered, at home support is an imperative. This study provides evidence that clients of PCAs who have completed a comprehensive, evidence-based PCA training program, titled Building Training…Building Quality (BTBQ), report higher satisfaction and better health outcomes, compared to clients of PCAs with lesser or other training...
March 2018: Journal of Patient Experience
Dorothea Frederick
Informal caregiving is the most common form of long-term care provided in the United States, and with the projected rapid growth of older adults, informal caregiving will be even more critical in the foreseeable future. In the United States, slightly more than 20% of informal caregivers provide care for more than one care recipient, and 10% provide care for three or more care recipients. Caring for a dependent, older adult patient may have negative effects on physical, psychological, psychosocial, social and financial health of caregivers...
March 2018: Journal of Patient Experience
Mahmoud Al Kalaldeh, Ghada Abu Shosha, Najah Saiah, Omar Salameh
Background: Patients' suffering has been increasingly investigated by health-care researchers especially in the chronically ill. Suffering is viewed as a progressive negative consequence that associated with pain, impaired self-esteem, and social alienation. This qualitative evidence synthesis aimed to provide further insights into the application of phenomenology in explaining suffering among patients with chronic illnesses. Methods: Studies included in this qualitative evidence synthesis study were retrieved by searching from the following electronic databases: CINAHL, PubMed Central, and EBSCO...
March 2018: Journal of Patient Experience
Carolyn A Wallace, David Pontin, Klara Dokova, Irma Mikkonen, Eileen Savage, Liisa Koskinen
Background: Health professional education has been criticized for not integrating patient expertise into professional curricula to develop professional skills in patient empowerment. Objective: To develop and translate a new expert patient-centered model for teaching empowerment into professional education about routine chronic care management. Methods: Eight Finnish patients (known as expert patients), 31 students, and 11 lecturers from 4 European countries participated in a new pilot intensive educational module...
March 2018: Journal of Patient Experience
Patricia K Agatisa, Mary Beth Mercer, Ariane Mitchum, Marissa B Coleridge, Ruth M Farrell
Purpose: The clinical introduction of innovative prenatal genetic technologies challenges patients and providers to find new ways of fostering informed decision-making in a setting characterized by complexity and uncertainty. As prenatal genetic technology advances, important questions remain about how to structure patient-centered conversations that effectively prepare pregnant patients to make informed choices about the different genetic conditions for which this new form screening may be used...
March 2018: Journal of Patient Experience
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