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The novel Coronavirus (COVID-19) has continued to present a significant burden to global public health efforts. The purpose of this study was to estimate the health-related quality of life, disability, and hea...
This article is part of a Supplement: Volume 7 Supplement 1
Long Covid is an unknown illness which has been shown to affect sufferers regardless of mild initial COVID-19 or age. There is still a lot unknown about long COVID illness. There has been a call to understand ...
The COVID-19 pandemic presents a unique, amplified threat to those living with a cancer diagnosis, but personal factors may play a role in how this affects well-being. This cross-sectional study (1) describes ...
The Venous Clinical Severity Score (VCSS) and the Venous Disability Score (VDS) represent assessment tools for chronic venous disease (CVD) combining physician and patient reported outcomes. To date, German ve...
A faecal or urinary ostomy may be lifesaving. However, it involves significant bodily change, and the adjustment process to life with an ostomy includes a broad spectre of physical and psychosocial challenges....
In the transition towards value-based healthcare, patient-reported outcome and experience measures (PROM and PREM) are recommended by international collaborations and government programs to guide clinical prac...
Discrepancies in symptom assessment between providers and patients are reported in cancer care, and the use of patient-reported outcome measures (PROMs) has been recommended for patients receiving palliative c...
The use of patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) in pediatric clinical practice can enhance clinical care and bring children and families’ perspectives into...
The EuroQol Group has developed an extended version of the EQ-5D-Y-3L with five response levels for each of its five dimensions (EQ-5D-Y-5L). The psychometric performance has been reported in several studies f...
Tardive dyskinesia (TD) is a persistent and potentially disabling movement disorder associated with antipsychotic use. Data from RE-KINECT, a real-world study of antipsychotic-treated outpatients, were analyze...
Within pediatric health care services, Patient-reported Outcomes (PROs) regarding the patient’s health status are mainly used for research purposes in a chronic care setting. However, PROs are also applied in ...
Internationally, patient-reported outcome measures are increasingly applied in clinical settings to patients undergoing total knee arthroplasty (TKA) and total hip arthroplasty (THA). Current literature does n...
While there are a few studies on measurement properties of PROMIS short forms for pain and function in patients with knee osteoarthritis, nothing is known about the measurement properties in patients with knee...
To capture the broad range of treatment burden issues experienced by adolescent and adult people with hemophilia (PWH), the Hemophilia Treatment Experience Measure (Hemo-TEM) was developed. We describe the dev...
The present study aimed at the translation and cross-cultural adaptation of six PROMIS® pediatric self- and proxy- item banks and short forms to universal German: anxiety (ANX), anger (ANG), depressive symptoms (...
Patient-reported outcome (PRO) measures are important to consider when evaluating treatments, yet there are no PRO measures for patients with acromegaly that have been developed in accordance with US Food and ...
Patient-reported outcome measures (PROMs) are standardized and validated self-administered questionnaires that assess whether healthcare interventions and practices improve patients’ health and quality of life...
This systematic literature review aimed to identify factors that influence the implementation of electronic patient-reported outcome measures (ePROMs) and patient-reported experience measures (ePREMs) in healt...
Pain and physical health domains included in Patient-Reported Outcomes Measurement Information System® (PROMIS®) can be administered as short forms (SF) or as computer adaptive tests (CAT). CAT is ideal in man...
Rheumatic and Musculoskeletal Diseases (RMDs) substantially impact the lives of patients, with complex associations between disease severity and self-perceived health status. In this regard, the Coping with Rh...
Self-efficacy is important for managing chronic conditions; however, its measurement in pediatric healthcare settings remains rare. The goal of this project was to adapt an existing disease-agnostic adult self...
The study aims to describe the quality of life (QoL) in Omani children with epilepsy at Sultan Qaboos University Hospital, Oman.
Patient-reported outcome measures are needed to assess the impact of treatments for COVID-19 on symptoms. The ACTIV-2 COVID-19 Symptom Diary (ACSD) is being used in the ongoing Accelerating COVID-19 Therapeuti...
The Symptoms of Infection with Coronavirus-19 (SIC) is a 30-item patient-reported outcome measure to evaluate the presence and severity of COVID-19 signs/symptoms in adults. This study expanded the context of ...
The chest-related electronic patient reported outcome (ePRO) diary was recently developed to assess chest-related symptoms experienced by pediatric and adolescent populations during upper respiratory tract inf...
Decision-making concerning relatives undergoing surgery is challenging. It remains unclear to what extent implicated next of kin eventually regret their decisions and how this regret is assessed. Our aim was t...
Although the psychometric properties of patient-reported outcome measures (e.g. the 22-item Sino-nasal Outcomes Test [SNOT-22]) in chronic rhinosinusitis with nasal polyps (CRSwNP) have been defined, these def...
Patient-reported outcome measures (PROMs) are standardized instruments used for assessing patients’ perspectives on their health status at a point in time, including their health-related quality of life, sympt...
With increasing survival rates in pediatric oncology, the need to monitor health-related quality of life (HRQOL) is becoming even more important. However, available patient-reported outcome measures (PROMs) ha...
The Disabilities of the Arm, Shoulder and Hand (DASH) questionnaire has been translated and cross-culturally adapted to Afrikaans for the Western Cape, within the public health service context of South Africa....
Acromegaly is a rare chronic endocrine disorder that can lead to significant quality of life (QoL) impairment and persistent symptomatology in both biochemically uncontrolled as well as in cured or controlled ...
The Primary Mitochondrial Myopathy Symptom Assessment (PMMSA) is a 10-item patient-reported outcome (PRO) measure designed to assess the severity of mitochondrial disease symptoms. Analyses of data from a clin...
To understand our performance with respect to the collection and reporting of patient-reported outcome (PRO) measure (PROM) data, we examined the protocol content, data completeness and publication of PROs fro...
Previous research has shown that Roma people report worse health outcomes than the general population and suffer from a myriad of economic and social disadvantages. The objective of this study was to assess th...
Treatment options for metastatic renal cell carcinoma (mRCC) have improved over recent years. Various therapies for metastatic renal cell carcinoma are currently approved for first and successive lines. Having...
Early intervention to reduce the impact of adverse events (AEs) may improve patients’ quality of life and enable optimal treatment duration.
Patient reported outcome measures (PROMs) may be useful for patients with benign liver tumours and cysts (BLTC) to evaluate the impact of treatment and/or guide shared decision making. Yet, a set of PROMs rele...
Although there is extensive literature on the clinical benefits of COVID-19 vaccination, data on humanistic effects are limited. This study evaluated the impact of SARS-CoV-2 infection on symptoms, Health-Rela...
Patient-reported experience measures (PREMs) assess quality-of-care from patients’ perspectives. PREMs can be used to enhance patient-centered care and facilitate patient engagement in care. With increasing qu...
Pectus excavatum (PE) is the most common congenital chest wall deformity. It can have a negative effect in exercise tolerance. However, cosmetic features are the most frequent concerns in these patients. The P...
Patient engagement is an important tool for quality improvement (QI) and optimizing the uptake of research findings. The Plan-Do-Study-Act (PDSA) model is a QI tool that encourages ongoing evaluation of clinic...
To quantitatively compare equivalence and compliance of patient-reported outcome (PRO) data collected via provisioned device (PD) versus bring your own device (BYOD).
Head and neck cancer (HNC) patients often undergo radiation therapy as part of their treatment. However, radiation therapy can have many side effects, including oral toxicities. Evaluating these toxicities is ...
There is limited information available on the impact of moderate asthma exacerbations, often called “asthma attacks” (i.e., those not requiring hospitalisation or treatment with systemic corticosteroids) on pa...
The impact of the COVID-19 pandemic on psychological well-being will likely be long-lasting. Efforts directed towards monitoring the onset and progression of distress and mental health disorders are needed to ...
Fabry disease is a rare X-linked lysosomal storage disorder. It is associated with physical distress and social challenges that may affect adults differently compared to pediatric patients. However, there is n...
The Urgency Numeric Rating Scale (NRS) was developed as a content-valid single-item patient-reported outcome measure to assess severity of bowel urgency. Here, we evaluated the psychometric properties of the U...
The impact of the coronavirus disease 2019 (COVID) is worse among those with fewer financial resources, in jobs not amenable to remote work, and in denser living conditions. People of color are more likely to ...
Making high-quality decisions when selecting treatment for lower urinary tract symptoms due to benign prostatic hyperplasia (LUTS/BPH) requires a shared decision-making approach. However, older people with low...
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