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Quality of Life Research OnlineFirst articles

Effects of WeChat-based EPIC training on health-related quality of life, attribution and life attitude in women newly diagnosed with breast cancer: a clinical randomized controlled trial

Breast cancer is a prevalent malignancy that affects women worldwide [ 1 ]. Adverse effects stemming from the disease and its treatments present a substantial risk to the physical, psychological, and social well-being of these individuals [ 2 , 3 …

COSMIN reporting guideline for studies on measurement properties of patient‑reported outcome measures: version 2.0

Patient‑reported outcome measures (PROMs) play a key role in modern health care and research settings [ 1 ]. PROMs are questionnaires that can be used to assess patients’ health status and evaluate treatment impact from the patients’ perspectives.

Interpreting the meaningfulness of treatment effects estimated in parallel groups designs: comment on Trigg et al.

  • Commentary

Draft guidance from the U.S. Food and Drug Administration states that one can interpret a treatment effect on a clinical outcome assessment–based endpoint when expressed as some difference between group means. Recently, Trigg et al. examined …

Psychometric properties, and cultural appropriateness, of patient reported outcome measures for use in primary healthcare: a scoping review

  • Open Access
  • Review

Psychometric properties, and cultural appropriateness, of patient reported outcome measures for use in primary healthcare: A scoping review. Patient-reported outcome measures (PROMs) are instruments used to report the status of a patient’s health …

Health-related quality of life after spontaneous subarachnoid hemorrhage – a prospective cohort study

  • Open Access

Spontaneous subarachnoid hemorrhage (SAH) is characterised by bleeding in the subarachnoid space and is associated with severe headache. An aneurysm is the underlying source of bleeding in most patients, but in about 15% of patients the source of …

Measuring the health outcomes of Chinese ischemic stroke patients based on the data from a longitudinal multi-center study

  • Open Access

Ischemic stroke is a kind of cardiovascular diseases with significant clinical and economic burden to patients and society. Ischemic stroke can impair both physical and mental health of the patients, therefore, it is important to describe and …

The caregiver burden of idiopathic inflammatory myopathies

Idiopathic inflammatory myopathies (IIM) are systemic inflammatory diseases primarily affecting muscles and occasionally other organs. There are multiple IIM including polymyositis, anti-synthetase syndrome and immune-mediated necrotizing myopathy …

Disutilities of treatment-related attributes for type 2 diabetes mellitus: a systematic review

  • Review

Diabetes mellitus (DM) has become an important health issue worldwide due to its high prevalence and related disability and mortality [ 1 ]. Among adults aged 20–79 years around the world, the estimated prevalence of DM was 10.5% in 2021, which is …

Reporting heterogeneity and health measurement bias in older adults: nationwide cross-sectional study

China has the largest population of middle-aged and older adults in the world, and this number is rising as the pace of aging continues to accelerate. Coupled with rapid socioeconomic changes and accelerating aging, middle-aged and older adults …

Determining minimal clinically important differences in ecological momentary assessment measures of fatigue in people with multiple sclerosis

  • Open Access

The smallest changes in treatment outcomes considered important by patients are often determined for traditional recall surveys. However, recall-bias with traditional surveys may contribute to unreliable assessment of the outcome. Evidence …

Relationship between core symptoms, function, and quality of life in colorectal cancer patients: a network analysis

Patients with colorectal cancer (CRC) often experience multiple concurrent symptoms, necessitating prompt recognition and precise management. The salient features of these symptoms are the large number of co-occurring symptoms and the intricate …

Family functioning and health-related quality of life in children and young adults with Marfan syndrome

Marfan syndrome (MFS) is an autosomal dominant condition of connective tissue impacting the skeletal, ocular, cardiovascular, pulmonary, central nervous, and integumentary systems, with a prevalence of approximately 1 in 5,000. Individuals with …

Advancing response-shift assessment: insights and directions from a series of ISOQOL SIG meetings

  • Letter to the Editor

The concept of response shift (i.e., recalibration, reprioritization, or reconceptualization of health outcomes by patients [ 1 ]) holds significant implications for the accurate interpretation of patient-reported outcomes (PROs) in clinical …

Patient experience of alpha-1 antitrypsin deficiency-associated liver disease: a qualitative study

  • Open Access

Alpha-1 antitrypsin deficiency (AATD) is an inherited condition that can cause liver and/or lung disease. A change in a single gene creates an abnormal protein in the liver. Individuals who have two copies of the abnormal gene are protease …

Psychometric properties of the Hebrew KIDSCREEN 52, 27 and 10 items: a cross-sectional study of self and parents reports in youth with and without physical disabilities

Good health related quality of life (HRQoL) in youth is essential for their overall well-being and successful transition to adulthood [ 1 ]. Among youth with disabilities, quality of life (QoL) and HRQoL are distinct concepts often used …

A patient first perspective of sleep disturbance across therapeutic areas: a systematic literature review of qualitative studies

  • Open Access
  • Review

Sleep is an essential pillar of health and is vital for day-to-day functioning and life. According to the Center for Disease Control and Prevention, 1 in 3 adults in the general public report not getting enough sleep. A single night of inadequate …

Effect of impairment on health-related quality of life in people with multiple sclerosis: association of functional systems and EQ-5D-5L index values in a cross-sectional study

  • Open Access

Multiple sclerosis (MS) is a chronic autoimmune, inflammatory and neurodegenerative disease that affected approximately 2.8 million people globally in 2020 [ 1 ]. It presents with a range of central nervous system dysfunctions, leading to diverse …

Development of self-report measures of physical, mental, and emotional fatigability: the michigan fatigability index (MIFI)

Fatigue–a perceived lack of energy, tiredness, and/or exhaustion—is a common and impactful symptom across nearly every health condition [ 1 ], and is a cardinal characteristic of conditions such as multiple sclerosis (MS) [ 2 , 3 ] and fibromyalgia …

Health-related social needs mitigate ethnoracial inequities in patient-reported mental health

Mental disorders, also known as mental illnesses, are conditions that affect a person's thinking, mood, behavior, or overall sense of well-being. They affect 1 in 5 adults in the United States (U.S.) and cost approximately $280 billion dollars …