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The FACT-8D is a new cancer-specific, preference-based measure (PBM) of health, derived from the Functional Assessment of Cancer Therapy – General (FACT-G) questionnaire. The FACT-8D’s measurement properties h...
ASCQ-Me®, Neuro-QoL™, NIH Toolbox®, and PROMIS®, which are health-related quality of life measures collectively known as HealthMeasures, have experienced rapid uptake in the scientific community with over 1700...
Individuals with vitiligo have an increased risk of depression, anxiety, social isolation and detrimental effects on body image/self-esteem. However, assessments of quality of life (QoL) impact have not focuse...
Partners of young breast cancer survivors (BCS) are at increased risk for deficits in quality of life (QoL). To intervene effectively, it is important to understand how the breast cancer experience impacts par...
Insomnia is a frequent sleeping disorder in the general and clinical population. With an increasing proportion of health care services being provided as outpatient care, a short, valid and reliable tool is nee...
It is unclear whether data from patient-reported outcome measures (PROMs) are captured and used by clinicians despite policy initiatives. We examined the extent to which fall risk and urinary incontinence (UI)...
Accurate score interpretation is required for the appropriate use of patient-reported outcome measures in clinical practice.
The validation of the Treatment-induced Neuropathy Assessment Scale (TNAS v2.0), a patient-reported outcome measure of symptoms associated with cancer treatment-induced peripheral neuropathy (TIPN), was previo...
Although the incidence, severity and mortality of Clostridioides (Clostridium) difficile infection (CDI) have been increasing, patients’ quality of life changes resulting from CDI have not been studied thoroughly...
Endometriosis is a common, chronic, impactful condition in women of reproductive age. In the absence of established sensitive and specific biomarkers, disease severity is determined by patient-reported symptom...
The purpose of the study was to pilot test the English and Urdu version of the Colon Cancer Screening Behaviours Survey among South Asians in Canada. The first objective was to evaluate feasibility of administ...
PROMIS Pediatric patient-reported outcome measures were developed with children from the general population, and their content validity has not been established in children with chronic disease. This study was...
The value of using real-time patient-reported outcome (PRO) measures in cancer communication has gained attention both in the clinic and in research. Despite this, no internationally accepted guidelines or tra...
The McMaster Health Utilities Index Mark 3 (HUI3) is a generic multi-attribute, preference-based system for assessing health-related quality of life (HRQOL). This study describes the translation procedures and...
Response-shift effects impact the interpretation of change in quality-of-life (QOL) measures developed with classical test theory (CTT) methods. This study evaluated the impact of response shift on measures de...
Over the past decade, the importance of person-centered care has led to increased interest in patient-reported outcome measures (PROMs). In cardiovascular care, selecting an appropriate PROM for clinical use o...
Technical innovation to assess patient-reported outcomes (PROs) facilitates their implementation in clinical practice. In particular, mobile applications (apps) allow PROs to be assessed outside of the clinica...
Patient Reported Experience Measures are promoted to be used as an integrated measurement approach in which outcomes are used to improve individual care (micro level), organisational quality (meso level) and e...
Patient-reported outcome measures (PROMs) are widely used in the United Kingdom (UK) and internationally to report and monitor patients’ subjective assessments of their symptoms and functional status and also ...
This article addresses patient-reported outcome (PRO)-based follow-up used as a substitute for regularly scheduled follow-ups. In PRO-based follow-up, patients’ PRO data filled in by the patients at home are u...
Hypertension is the most prevalent risk factor for cardiovascular disease globally. Roughly one-third of the adult population has hypertension. However, most people diagnosed with hypertension do not benefit f...
To develop and assess the psychometric properties of the Thai version of the Graves’ Ophthalmopathy Quality of Life (GO-QOL) questionnaire.
Patient reported outcomes (PROs) provide information on a patient’s health status coming directly from the patient. Measuring PROs with patient reported outcome measures (PROMs) has gained wide interest in cli...
The patient-doctor relationship is crucial to provide person-centred care, allowing the alleviation of symptom burden caused by disease or treatment. Implementing Patient Reported Outcome Measures (PROMs) is s...
Early-stage breast cancer is often treated with breast-conserving therapy (BCT), including lumpectomy with radiation therapy. Patients’ expectations of BCT remain largely unknown. Expectations affect perceptio...
Bone metastasis (BM) is the most common site of disease in metastatic breast cancer (MBC) patients. BM impacts health-related quality of life (HRQoL). We tested prospectively the psychometric properties of the...
The literature on the specification and measurement of the outcomes of the healthcare transition from pediatric to adult centered-care is scarce and methodologically weak. To address these gaps, we conducted a...
Ankle fractures are painful and debilitating injuries that pose a significant burden to society and healthcare systems. Patient reported outcome measures (PROMs) are commonly used outcome measures in clinical ...
The Patient-Reported Outcomes Measurement Information System® (PROMIS) includes a Physical Function (PF) item bank and an Upper Extremity (UE) item bank, which is composed of a subset of items from the PF bank...
This article is part of a Supplement: Volume 3 Supplement 1
There is a lack of patient derived, child specific outcome measures to capture what health outcomes are important to children with Chronic Fatigue Syndrome/ Myalgic Encephalopathy (CFS/ME). We developed a new ...
Ulcerative colitis (UC) often first presents during adolescence and early adulthood. Primary symptoms of UC are well known, yet similarities and differences of disease experience in adults and adolescents are ...
Chronic obstructive pulmonary disease (COPD) is a progressive chronic disease characterized by airflow obstruction that leads to shortness of breath and substantial negative impacts on health-related quality o...
Carcinoid syndrome is associated with a reduced quality of life that can be attributed to symptoms such as diarrhea and fatigue as well as social and financial issues. This study was conducted to psychometrica...
To examine the acceptability of a Patient Reported Outcome Measure (PROM) that assesses perceptions and experiences of implants for breast reconstruction or augmentation, and the feasibility of implementing it...
The Bladder Cancer Index (BCI) and Functional Assessment of Cancer Therapy-Bladder-Cystectomy (FACT-Bl-Cys) were developed to measure disease-specific health-related quality of life (HRQOL) in bladder cancer p...
The use of patient-reported outcome (PRO) could potentially contribute to the reorganization of the health care system. AmbuFlex is a PRO system used in remote patient monitoring, in which questionnaires are s...
The Memorial Anxiety Scale for Prostate Cancer (MAX-PC, 18 items) was developed to assess anxiety in prostate cancer patients. In the absence of a French version of this scale, we adapted the original English ...
Hyperhidrosis is estimated to affect ~ 4.8% of the US population, and most patients experience a negative psychological impact. Here, we describe development and psychometric evaluation of a patient-reported o...
Identifying symptoms experienced throughout the disease trajectory is pivotal to understanding management of patient symptoms. Patient interviews to solicit input from those who have experienced these symptoms...
To evaluate the psychometric characteristics of the 1-month recall Uterine Fibroid Symptom and Health-Related Quality of Life questionnaire (UFS-QOL), including the Revised Activities subscale.
Selection of specific patient-reported outcomes (PROs) for cancer patients requires careful consideration to the purpose and population at aim. Here we report the process of choosing which items to include in ...
To explore the relationship between illness perceptions and self-reported general health of patients with chronic heart disease, using some core elements from the Common Sense Model.
Group concept mapping (GCM) is a research method that engages stakeholders in generating, structuring and representing ideas around a specific topic or question. GCM has been used with patients to answer quest...
Management of cancer is often characterized by difficult decisions. The National Coalition for Cancer Survivorship (NCCS) has developed the “Know Yourself” tool, a question prompt list (QPL) to enable patients...
Translation and cross cultural adaptation of patient reported outcome measures (PROMs) involves a step referred to as harmonisation, following forward and backward translation of the measure. This article prop...
Psychometric analyses of patient reported outcomes typically use either classical test theory (CTT), item response theory (IRT), or Rasch measurement theory (RTM). The three papers from the ISOQOL Psychometric...
The three articles in this issue from members of the Psychometric Special Interest Group (SIG) of the International Society for Quality of Life Research (ISOQOL) examine three different psychometric techniques...
The aim of this study is to illustrate an example application of Rach Measurement Theory (RMT) in the evaluation of patient-reported outcome (PRO) measures. RMT diagnostic methods were applied to evaluate the ...
Psychometric theory offers a range of tests that can be used as supportive evidence of both validity and reliability of instruments aimed at measuring patient-reported outcomes (PRO). The aim of this paper is ...
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