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Between 1987 and 1990, the EuroQol Group developed a 5-dimension health-related quality of life instrument, originally known as ‘the EuroQol instrument’, which since 1995 has been called the ‘EQ-5D’. For sever...
Patient-reported outcomes (PROs) are increasingly collected in clinical trials as they provide unique information on the physical, functional and psychological impact of a treatment from the patient’s perspect...
The aim of this study was to evaluate the usefulness of EQ-5D as a patient-reported outcome measure using different analytical methods. Especially we used the Paretian Classification of Health Change, to see i...
Patient-reported outcomes (PROs) refer to any report of the status of a patient’s health condition, health behavior, or experience with healthcare directly from the patient, without interpretation of the patie...
Reducing non-completion of quality-of-life assessment in clinical trials is an important challenge in obtaining accurate data and unbiased interpretation of patients’ quality-of-life for each regimen. We evalu...
Little research has focused on implementation of electronic Patient Reported Outcomes (e-PROs) for meaningful use in patient management in ‘real-world’ oncology practices. Our quality improvement collaborative...
The quality of life (QoL) of patients with lung cancer (LC) may be affected by disease-related limitations such as patients’ functioning, the severity of symptoms, financial problems resulting along with the s...
Individuals with Down syndrome exhibit particular oro-facial characteristics that may increase their risk of oral health problems. However, there is little research on the oral health of children and adults wi...
Pulmonary Hypertension (PH) impacts negatively on patients’ health-related quality of life (HRQoL). The Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR) was the first PH-specific and validated instrum...
Current US health policy discussions regarding physician burnout have largely been informed by studies employing the Maslach Burnout Inventory (MBI); yet, there is little in the literature focused on interpret...
The 12-item International Hip Outcome Tool (iHOT12) is a patient-reported outcome (PRO) designed to evaluate quality of life. We assessed the psychometric properties of the Greek version (iHOT12-Gr) in hip ost...
Research on outcomes after ankle fusion focuses on basic activities of daily living, fusion rates, and gait parameters. Little has been reported on the patient’s perspective after surgery. The purpose of this ...
Value-based healthcare models will require prioritization of the patient’s voice in their own care toward better outcomes. The Patient-Reported Outcomes Measurement Information System® (PROMIS) gives patients ...
Fatigue following breast cancer is a well-known problem, with both high and persistent prevalence. Previous studies suffer from lack of repeated measurements, late recruitment and short periods of follow-up. T...
Patients with cystic fibrosis (CF) experience significant disease burden, including progressive pulmonary decline and reduced survival. This multicenter qualitative study was conducted to develop a new patient...
Goal Attainment Scaling (GAS) is an individualized outcome measure that allows the setting of personalized treatment goals. We compared the responsiveness of GAS when individuals set only one goal instead of t...
This article is part of a Supplement: Volume 4 Supplement 1
The Singapore Caregiver Quality of Life Scale (SCQOLS) was recently developed and validated in two languages - English and Chinese. The total and domain scores are scaled to range from 0 to 100. However, the s...
Endometriosis-related fatigue is common and negatively impacts multiple areas of many women’s lives, particularly in day-to-day activities, social activities, physical activities, mood and emotions, relationsh...
Alertness is an important part of attention which is different from the opposite of sleepiness. This study aimed to translate and assess the measurement properties of the Toronto Hospital Alertness Test (THAT)...
Human T-cell lymphotropic virus type 1 (HTLV-1) spreads silently in the world’s population and causes several syndromes. Among these, HTLV-1 associated myelopathy, also called tropical spastic paraparesis (HAM...
Neurotrophic keratopathy/keratitis (NK) is a rare disease of the cornea that can lead to anatomical loss of the eye. Little is known about the NK experience from the patients’ perspective. The objectives of th...
According to studies of phenylketonuria (PKU), the Brazilian population’s metabolic control shows unsatisfactory indexes from childhood. Research on patients’ perceived difficulties or barriers to adherence to...
Colorectal cancer (CRC) is prevalent in the developed world. Favourable survival rates highlight the need to better understand CRC survivors’ experiences of long-term impacts of treatment, which can in turn in...
A cancer diagnosis is potentially life-threatening, likely causing distress and uncertainty, which may be psychologically debilitating. Depression and anxiety are commonly underdiagnosed and undertreated in ca...
Burns are a global health problem affecting the survivors and disrupting many aspects of their lives. It is the second most common injury in rural Nepal accounting 5% of disabilities. Burn Specific Health Scal...
Successful community-engaged research depends on the quality of the collaborative partnerships between community -members and academic researchers and may take several forms depending on the purpose which dict...
The Health Utilities Index Mark 3 (HUI3) is a generic multi-attribute, preference-based system for assessing health-related quality of life. It is widely used overseas as an outcome measure and for estimating ...
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...
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