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Patient-Reported Outcomes in Glomerular Disease.

ABSTRACT: Incorporation of the patient perspective into research and clinical practice will enrich our understanding of the status and management of patients with glomerular disease and may result in therapies that better address patient needs. In recent years, the importance of the patient experience of glomerular disease has become clear, and significant efforts have been undertaken to systematically capture and describe the patient's disease experience. Patient-reported outcome instruments provide a means to assess the patient's experience in a quantitative manner, thus enabling for comparisons within and between patients. Patient-reported outcome assessments are solely on the basis of a patient report about the status of their health without amendment or interpretation by a clinician or others. Patient-reported outcome assessments provide an opportunity to incorporate the patient perspective into clinical care, research, and clinical trials. Our paper provides an overview of terminology and development methods for patient-reported outcomes and reviews (1) currently available patient-reported outcome instruments appropriate for use in glomerular disease, (2) existing patient-reported outcome data in glomerular disease, and (3) opportunities for incorporating patient-reported outcome instruments into clinical care and research.

SUBMITTER: Selewski DT

PROVIDER: S-EPMC5220669 | biostudies-other | 2017 Jan

REPOSITORIES: biostudies-other

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Patient-Reported Outcomes in Glomerular Disease.

Selewski David T DT Thompson Aliza A Kovacs Sarrit S Papadopoulos Elektra J EJ Carlozzi Noelle E NE Trachtman Howard H Troost Jonathan P JP Merkel Peter A PA Gipson Debbie S DS

Clinical journal of the American Society of Nephrology : CJASN 20160603 1

Incorporation of the patient perspective into research and clinical practice will enrich our understanding of the status and management of patients with glomerular disease and may result in therapies that better address patient needs. In recent years, the importance of the patient experience of glomerular disease has become clear, and significant efforts have been undertaken to systematically capture and describe the patient's disease experience. Patient-reported outcome instruments provide a me ...[more]

PMID: 27259977

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Project description:BackgroundGaucher's disease (GD), a rare condition, represents the most common lysosomal storage disorder. The cardinal manifestations of GD are fatigue, hepatosplenomegaly, anemia, thrombocytopenia, bone pain, and bone infarction, thereby culminating in a marked deterioration of patients' quality of life (QoL). Patient-reported outcomes (PROs) offer valuable insights into the impact of GD on patients' QoL and symptoms. This systematic review aimed to identify and analyze PROs and outcome measures in GD patients.MethodsWe systematically searched PubMed, Web of Science Core Collections, EMBASE, SCOPUS, Cochrane Library, PsycINFO, Wan Fang Data, China National Knowledge Infrastructure (CNKI), and the Chinese Biomedical Literature Database (CBM). The methodological quality of the included studies was assessed using a mixed methods assessment tool.ResultsA total of 33 studies were identified, encompassing 24 distinct patient-reported outcome instruments, with the most frequently employed instrument being the SF-36. The study designs included eighteen cross-sectional studies, seven pre- and post-intervention investigations, three randomized controlled trials, two cohort studies, two qualitative inquiries, and one validation study. These studies explored diverse domains such as the QoL and cardinal symptoms (e.g., fatigue, pain, bleeding, cognition, social relationships, and psychological functioning) in patients with GD. Furthermore, significant attention was directed towards the appraisal of the therapeutic benefits of various interventions in patients with GD. A novel GD-specific instrument has also been developed, which has two applied versions: a 24-item variant for routine clinical monitoring and a 17-item form for use in clinical trials.ConclusionPROs have garnered increased attention and concern in the realm of GD. Despite this progress, it is noteworthy that the instruments used to measure PROs in GD are still predominantly generic instruments. While researchers have endeavored to develop and validate a disease-specific instrument, currently the use of this instrument is limited. Owing to several challenges, including the small number of patients, heterogeneity of the disease, and cross-regional discrepancies in study findings, GD poses substantial difficulties in the measurement of QoL and development of instruments. Consequently, patients with GD require more dependable measurement instruments that accurately reflect their QoL, efficacy of treatment, and facilitate healthcare decision-making.

Project description:BackgroundDigital patient reported outcomes are used increasingly in daily care and treatment of inflammatory bowel disease. Their purpose includes increased focus on patient wellbeing, reduction in avoidable follow-up consultations and increased patient self-management. However, implementation issues occur and studies indicate patients may have concerns, particularly regarding having fewer face-to-face consultations. This study aims to explore patients' perspectives of use and non-use of digital patient reported outcomes and to understand the mechanisms underpinning patient reluctance to engage with this health technology.ResultsSixteen patients with inflammatory bowel disease at a regional hospital in Denmark were interviewed about their experiences of, and perspectives on, digital patient reported outcomes. A certain level of eHealth literacy was found to be a fundamental condition for use, while other factors were barriers or facilitators for use of digital PROs. Patients' main concerns were about potential consequences for their care and relationship with the clinic. Most patients in stable remission were satisfied with the hospital being a "life-line" if their symptoms worsened, and perceived digital patient reported outcomes to be an efficient tool to establish that "life-line". Patients with severe symptoms and a high degree of emotional distress related to their disease valued the potential for digital patient reported outcomes to increase their clinicians' focus on mental health and extra-intestinal symptoms.ConclusionThis study found that if patients had sufficient digital literacy, they perceived digital patient reported outcomes to be a useful replacement for face-to-face consultations. However, they were concerned about digital patient reported outcomes' effect on the patient-clinician relationship and its ability to detect worsening of symptoms. These concerns may be mitigated by good patient-clinician relationships, and the option for patients to maintain direct telephone contact with their gastroenterology specialist.

Project description:Background Atherosclerotic cardiovascular disease ( ASCVD ) accounts for approximately one third of deaths in women. Although there is an established relationship between positive patient experiences, health-related quality of life, and improved health outcomes, little is known about gender differences in patient-reported outcomes among ASCVD patients. We therefore compared gender differences in patient-centered outcomes among individuals with ASCVD . Methods and Results Data from the 2006 to 2015 Medical Expenditure Panel Survey, a nationally representative US sample, were used for this study. Adults ?18 years with a diagnosis of ASCVD , ascertained by International Classification of Diseases, Ninth Revision ( ICD-9) codes and/or self-reported data, were included. Linear and logistic regression were used to compare self-reported patient experience, perception of health, and health-related quality of life by gender. Models adjusted for demographics, socioeconomic status, and comorbidities. There were 21 353 participants included, with >10 000 (47%-weighted) of the participants being women, representing ?11 million female adults with ASCVD nationwide. Compared with men, women with ASCVD were more likely to experience poor patient-provider communication (odds ratio 1.25 [95% confidence interval 1.11-1.41]), lower healthcare satisfaction (1.12 [1.02-1.24]), poor perception of health status (1.15 [1.04-1.28]), and lower health-related quality of life scores. Women with ASCVD also had lower use of aspirin and statins, and greater odds of ?2 Emergency Department visits/y. Conclusions Women with ASCVD were more likely to report poorer patient experience, lower health-related quality of life, and poorer perception of their health when compared with men. These findings have important public health implications and require more research towards understanding the gender-specific differences in healthcare quality, delivery, and ultimately health outcomes among individuals with ASCVD .

Dataset Information

Patient-Reported Outcomes in Glomerular Disease.

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Patient-Reported Outcomes in Glomerular Disease.

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