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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...
Patient-reported outcomes can measure health aspects that are meaningful to patients, such as ‘life engagement’ in major depressive disorder (MDD). Expert psychiatrists recently identified ten items from the I...
Surgical site infection (SSI) and venous thromboembolism (VTE) are associated with high burden and cost and are considered largely preventable following total knee or hip arthroplasty (TKA, THA). The risk of d...
The COVID-19 pandemic has impacted various aspects of people’s life and wellbeing around the world. This study aimed to examine the impact of the COVID-19 pandemic on health-related quality of life (HRQL), mea...
The Anal Cancer High-grade squamous intraepithelial lesions (HSIL) Outcomes Research (ANCHOR) Health-Related Symptom Index (A-HRSI) is a 25-item measure that assesses physical symptoms and impacts, and psychol...
A glaucoma-specific health-related quality of life (HRQoL) item bank (IB) and computerized adaptive testing (CAT) system relevant to Asian populations is not currently available. We aimed to develop content fo...
Alcohol consumption has changed during the COVID-19 pandemic yet the impacts on alcohol-related outcomes, and specifically health-related quality of life, are not completely known. Our objective was to assess ...
While a substantial body of work postulates that adaptation (response-shift effects) may serve to hide intervention benefits, much of the research was conducted in observational studies, not randomized-control...
To develop the novel multidimensional health perceptions questionnaire (MHPQ), a self-reported assessment of health perceptions inclusive of (1) individuals beliefs about the causes and consequences of health ...
Pain is common among torture survivors and refugees. Clear communication about one’s pain is vital to timely and precise diagnosis and treatment but is rarely recognized as a social determinant of health. We e...
In palliative oncology settings, electronic patient-reported outcome (PRO) assessment can play an important role in supporting clinical activities for clinicians and patients. This scoping review aims to map t...
The independent healthcare sector in the UK collects PROMs for several surgical procedures, but implementation has been challenging. We aimed to understand the enablers and barriers to PROMs implementation in ...
The Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-F) scale has demonstrated good internal consistency and responsiveness to changes in clinical status among patients with ankylosing spondylit...
Patient-reported outcome (PRO) measures may be used in telehealth for the clinical assessment of mental health and diabetes distress, which are important aspects in diabetes care, but valid and reliable instru...
This study aimed to translate and validate an Arabic version of the Functional Assessment of Cancer Therapy Head and Neck Scale (FACT-H&N, v-4) for use among Sudanese oral cancer patients.
Citation Impact 2023
Journal Impact Factor: 2.4
5-year Journal Impact Factor: 3.1
Source Normalized Impact per Paper (SNIP): 1.019
SCImago Journal Rank (SJR): 0.872
Speed 2023
Submission to first editorial decision (median days): 10
Submission to acceptance (median days): 173
Usage 2023
Downloads: 642,043
Altmetric mentions: 559
