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Quality of Life Research OnlineFirst articles

Use of the adult social care outcomes toolkit (ASCOT) in research studies: an international scoping review

  • Open Access
  • Review

Informed by Sen’s capability approach [ 1 , 2 ], the Adult Social Care Outcomes Toolkit (ASCOT) is a family of instruments that measure social care-related quality of life (SCRQoL) [ 3 , 4 ]. SCRQoL refers to aspects of quality of life (QoL) that …

Explanation & Elaboration document of the COSMIN Reporting Guideline 2.0 for studies on measurement properties of patient-reported outcome measures

Patient-Reported Outcome Measures (PROMs) can be key tools for clinical decision-making. PROMs should be sufficiently reliable, valid, and responsive to reflect the patient’s perspective (e.g., feelings, daily functions, well-being etc.).

Health-related quality of life and economic impacts in adults with transfusion-dependent β-thalassemia: findings from a prospective longitudinal real-world study

  • Open Access

β-thalassemia is a rare hereditary hemoglobinopathy with a prevalence rate of 18 out of 100,000 [ 1 ]. Worldwide there are over 1 million people with β-thalassemia, with each year over 40,000 newborns diagnosed, nearly 62% (approximately 25,500) of …

Health-related quality of life and economic impacts in adults with sickle cell disease with recurrent vaso-occlusive crises: findings from a prospective longitudinal real-world survey

  • Open Access

Sickle cell disease (SCD) refers to a group of inherited disorders caused by mutations in the gene that encodes the β-subunit of adult hemoglobin ( HBB ). These mutations lead to the production of abnormal, sickled hemoglobin and chronic hemolytic …

An international compendium of health state utilities in people with HIV: a systematic review

  • Open Access
  • Review

The introduction of antiretroviral therapies (ARTs) and highly active ARTs has greatly reduced morbidity and mortality for people with HIV (PWH), with marked improvements in life expectancy seen since 1996 [ 1 ]. ARTs, however, are currently unable …

Exploratory analysis of electronic patient-reported outcomes collection: comparing online and in-clinic modalities in cancer care

  • Open Access

Patient reported outcome measures (PROMs) are evidence-based patient communication tools that have begun to gain popularity and implementation across several fields of medicine, especially in cancer care [ 1 ]. PROMs help better incorporate …

The moderating effect of family socioeconomic status in the relationship between health-related behaviors and quality of life among the Hakka older adults in Fujian, China

  • Open Access

The quality of life (QOL) serves as a pivotal reference for assessing human health. However, there is a notable dearth of research focusing on the QOL of specific populations, particularly older adults. Prior studies have highlighted the …

Impact of early-life food deprivation on health-related quality of life among older people in China: evidence from CHARLS

With the intensification of global population aging, the health and quality of life of older people have become major global concerns [ 1 ]. Health-related quality of life (HRQoL) refers to the impact of an individual’s health status—encompassing …

Quality of life and access to treatment for patients with multiple sclerosis during economic crisis: the Lebanese experience

This study is essential because it examines how Lebanon's economic crisis affects the lives of people with multiple sclerosis (MS). The main issue it addresses is how the crisis has limited patients' access to necessary treatments, impacting their …

Predictors of survival among head and neck cancer patients after radiotherapy based on health-related quality of life indices and symptoms-specific outcomes: a systematic review

  • Review

This study addresses the need to understand how health-related quality of life (HQoL) impacts the overall survival (OS) of head and neck cancer (HNC) patients. By analyzing various HQoL indices and symptoms-specific outcomes, the study aims to …

The humanistic burden of focal segmental glomerulosclerosis on patients and care-partners in the United States

  • Open Access

Focal segmental glomerulosclerosis (FSGS) is a kidney disease characterized by scarring of the glomerulus, vessels which filter waste and excess fluids from the blood, and can ultimately lead to decline in kidney function and progression to kidney …

A COSMIN systematic review of generic patient-reported outcome measures in Switzerland

  • Open Access
  • Review

Patient-reported outcome measures (PROMs), defined as “a report coming directly from patients about how they feel or function without interpretation by healthcare professionals or anyone else” continue to figure prominently in quality-based …

The effect of a community-based health behaviour intervention on health-related quality of life in people with Type 2 diabetes in Nepal: a Cluster Randomized Controlled Trial

  • Open Access

Little is known about the effectiveness of health behaviour intervention in improving health-related quality of life (HRQOL) of people with Type 2 diabetes mellitus (T2DM) despite HRQOL being an important outcome in T2DM management. This study …

Association between sarcopenic obesity, obesity, sarcopenia and quality of life in middle-aged and older Chinese: the Guangzhou Biobank Cohort Study

  • Open Access

Sarcopenic obesity (SO) is complex phenotype that combines excess adiposity with a significant reduction in muscle mass and strength [ 1 , 2 ]. The clinical significance of SO is underscored by its association with more severe adverse health …

Blood ammonia and eye-hand coordination negatively affect health-related quality of life in women with minimal hepatic encephalopathy

  • Open Access

This study examines how minimal hepatic encephalopathy (MHE), a common condition in patients with cirrhosis, affects thinking and coordination. High ammonia levels in the blood are linked to cognitive issues and coordination problems, which may …

Quality of life and cost-utility analysis in patients with femoral neck fracture: a propensity score matching study comparing monopolar hemiarthroplasty and total hip arthroplasty

This study is needed to understand how different types of hip replacement surgeries affect the quality of life in patients who have broken the neck of their femur, which is a common injury in older adults. The key question this research addresses …

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 …