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Policies to support people living with dementia increasingly focus on strengths-based approaches, highlighting the importance of building resilience. This research responds to the lack of a suitable resilience...
Classic Galactosemia (CG) is a rare, autosomal recessive condition. Newborn screening and a timely galactose-restricted diet can resolve acute symptoms and decrease fatalities, but significant chronic, progres...
Multimorbidity is a burden for the individual and to the healthcare sector worldwide, leading to a rising number of intervention studies towards this patient group. To measure a possible effect of such interve...
The health-related quality of life (HRQoL) among long-term Adolescent and Young Adult Cancer Survivors (AYACS) and an age- and sex-matched normative population was examined. Although the HRQoL of AYACS was wor...
The COMET-ICE trial demonstrated that sotrovimab clinically and statistically significantly reduces the risk of all-cause > 24-h hospitalization or death due to any cause among patients with COVID-19 at high r...
The International Consortium for Health Outcomes Measurement (ICHOM) developed a standard set of patient-centered outcome measures for use in stroke patients. In addition to the Patie...
Comparison of patient-reported outcomes in multilingual studies requires evidence of the equivalence of translated versions of the questionnaires. The present study examines the factorial validity and comparab...
Treatments for type 2 diabetes vary widely in their complexity. The simplicity or complexity of a treatment regimen may have an impact on patient preference, treatment adherence, and health outcomes. The purpo...
COVID-19 pandemic placed unprecedented pressure on societies and healthcare systems around the world. Over the last years, measures imposed in almost all countries dealing with the pandemic sent the entire wor...
Practitioner and family experiences of pediatric re/habilitation can be inequitable. The Young Children’s Participation and Environment Measure (YC-PEM) is an evidence-based and promising electronic patient-re...
The guidelines for mechanical circulatory support of the International Society for Heart and Lung Transplantation do not recommend the routine replacement or repair of the mitral valve at the time point of lef...
To further develop the Person-Centred Care instrument for outpatient care (PCCoc), evaluate its user-friendliness and content validity, and to explore its basic psychometric properties in various outpatient se...
Dengue is the most prevalent arboviral infection causing an estimated 50–60 million cases of febrile illness globally per year, exacting considerable disease burden. Few instruments exist to assess the patient...
Post-thrombotic syndrome (PTS) is the most common complication of deep venous thrombosis (DVT). The index for the Clinical Assessment of Post-Thrombotic Syndrome in children (CAPTSure©) is a clinical tool for ...
Spontaneous intracranial hypotension (SIH) is an underdiagnosed and debilitating condition caused by a spinal cerebrospinal fluid (CSF) leak. Although SIH can lead to substantial morbidity and disability, litt...
Patient-reported outcome measures (PROMs) provide a measure of self-perceived health status or health-related quality of life. They have been used to support provider-patient decisions, healthcare delivery, an...
The Knee Injury and Osteoarthritis Outcomes Score (KOOS) is a free clinical tool commonly used to evaluate the symptoms and functional status of patients with knee injury. For people who speak Chinese, the Hon...
Identifying the most relevant HRQOL domains for LBP from the perspective of individuals with lived experience with LBP is necessary to prioritize domains that will be most informative for evaluating the impact...
Goal Attainment Scaling (GAS) is an outcome measure that reflects the perspectives and experiences of patients, consistent with patient-centred care approaches and with the aims of patient-reported outcome mea...
Longitudinal estimates of long COVID burden during Omicron remain limited. This study characterized long-term impacts of COVID-19 and booster vaccination on symptoms, Health-Related Quality of Life (HRQoL), an...
Patient-reported outcome measures - PROMs - have been developed to provide an assessment of patients’ physical function, symptoms, and health-related quality of life. With patient-centered care becoming increa...
Fatigue has a detrimental impact on health-related quality of life and functioning in patients with Crohn’s disease (CD). We aimed to confirm the relevance and importance of fatigue, establish the content vali...
Retinitis Pigmentosa (RP) and Leber Congenital Amaurosis (LCA) are rare inherited retinal degenerative disorders. The associated visual impairments have significant impacts on patients’ vision-dependent activi...
Evaluating the criterion validity and responsiveness of the self-reported FitMáx©-questionnaire, Duke Activity Status Index (DASI) and Veterans Specific Activity Questionnaire (VSAQ) to monitor aerobic capacit...
Women with endometrial or ovarian cancer experience a variety of symptoms during chemotherapy. Patient-Reported outcomes (PROs) can provide insight into the symptoms they experience. A PRO tool tailored to thi...
Cancer survivors are at greater risk for poor health outcomes due to COVID-19. However, the pandemic's impact on patients’ health-related quality of life (HRQoL) is not well known. This study hypothesized that...
Metachromatic leukodystrophy (MLD) is a rare lysosomal storage disease caused by deficient activity of arylsulfatase A (ASA). Treatment options for patients are limited; gene therapy based on haematopoietic st...
Standardized measures for evaluating patients’ experiences with nonalcoholic steatohepatitis (NASH) and their perceived changes with treatment in clinical trials have been limited. To meet this need, a patient...
Congenital thrombotic thrombocytopenic purpura (cTTP) is an ultra-rare, life-threatening hereditary disorder that causes patients to experience significant morbidity and decreased health-related quality of lif...
This study characterized depression trajectories during the COVID pandemic and investigated how appraisal and changes in appraisal over time related to these depression trajectories.
The original article was published in Journal of Patient-Reported Outcomes 2020 4:106
Refractory chronic cough (RCC), a cough lasting longer than 8 weeks with an unexplained underlying etiology and unresponsive to conventional treatment, can have substantial effects on patients’ quality of life...
Dry eye disease (DED), Meibomian gland dysfunction (MGD), and Sjögren’s syndrome dry eye disease (SS-DED) are eye dryness conditions that show significant overlap in various symptoms of ocular discomfort. The ...
Fatigue is the most common symptom associated with paroxysmal nocturnal hemoglobinuria (PNH). The objective of this analysis was to estimate values that would suggest a clinically important change (CIC) for th...
With its health risks and extensive disruption to everyday life, the SARS-CoV-2 (COVID-19) pandemic has affected the lives of billions of people. People with chronic conditions are particularly susceptible to ...
As disease-modifying therapies do not reverse the course of multiple sclerosis (MS), assessment of therapeutic success involves documenting patient-reported outcomes (PROs) concerning health-related quality of...
Living with autoimmune thyroid disease is a longstanding challenge and can seriously affect the quality of life. We aimed to adapt and validate the Hungarian version of the Thyroid-Related Patient-Reported Out...
The Bristol Impact of Hypermobility questionnaire (BIoH) is the first condition-specific patient reported outcome measure for people with hypermobility-related conditions. The BIoH original version is in Engli...
Falls prevention in hospital continues to be a research priority because of the poor health outcomes and financial burdens that can arise. Recently updated World Guidelines for Falls Prevention and Management ...
Establishing the psychometric reliability and validity of new measures is an ongoing process. More work is needed in to confirm the clinical utility of the TBI-CareQOL measurement development system in both an...
The pediatric patient-reported outcomes version of the common terminology criteria for adverse event measure was developed and validated for use in pediatric cancer clinical trials to better capture the sympto...
The Hyperhidrosis Quality of Life Index (HidroQoL ©) is a well-developed and validated patient-reported outcome measure assessing the quality-of-life impacts in hyperhidrosis with 18 items. Our aim was to exte...
Research shows that feeding back patient-reported outcome information to clinicians and/or patients could be associated with improved care processes and patient outcomes. Quantitative syntheses of intervention...
The original article was published in Journal of Patient-Reported Outcomes 2023 7:33
Many large-scale population-based surveys, research studies, and clinical care allow for inclusion of proxy reporting as a strategy to collect outcomes when patients are unavailable or unable to provide reliab...
The Respiratory Infection Intensity and Impact Questionnaire (RiiQ™) is a patient-reported outcome measure designed to assess symptoms and impacts of respiratory syncytial virus (RSV) infection. This study eva...
Patient Reported Outcomes (PROs) are an evidenced way of adding value to routine clinical care. As a source of unique information on the effect of a medical condition and its treatment from the patients’ persp...
The ability to communicate is a prerequisite for participation in today’s society. To measure participation in adults with communication disorders, the Communicative Participation Item Bank (CPIB) was develope...
Symptom expression in SARS-CoV-2 infection (COVID-19) may affect patients already symptomatic with cancer. Patient-reported outcomes (PROs) can describe symptom burden during the acute and postacute stages of ...
The original article was published in Journal of Patient-Reported Outcomes 2023 7:18
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