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Quality of Life Research OnlineFirst articles

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 …

Young children (6–7 years) can meaningfully participate in cognitive interviews assessing comprehensibility in health-related quality of life domains: a qualitative study

  • Open Access

Systematic measurement of children’s health-related quality of life (HRQoL) and related constructs via patient reported outcome measures (PROMs) is essential for incorporating children’s own views and experiences into healthcare, research and …

Understanding the health-related quality of life impacts of caring for children and adolescents with rare progressive life-limiting conditions: key challenges and future research priorities

  • Open Access
  • Commentary

The inclusion of health-related quality of life (HRQoL) impacts on informal carers in health technology assessments (HTAs) is lacking due, primarily, to a deficiency in evidence and methodological issues on how informal carer HRQoL is captured and …

A systematic review of outcome measurement instruments used in pouch anal and vaginal fistulae: a COSMIN-based analysis

  • Open Access
  • Review

Pouch surgery is performed to improve the quality of life of patients who have had their colon and rectum removed by avoiding a permanent stoma. Pouch-related fistulae are complications of pouch surgery that are difficult to treat, with limited …

Enabling six- to ten-year-old children to self-report their wellbeing and quality of life: development and psychometric investigation of an age-adapted and video-assisted version of the KIDSCREEN-27

  • Open Access

Wellbeing and health-related quality of life (HRQoL) are important parts of positive child development and health [ 1 ]. Poor wellbeing among children and youth is an increasing concern worldwide [ 2 ], and in Denmark, a decrease in wellbeing has …

Impact of a minimal monitoring HCV treatment approach on Health-Related Quality of Life

The hepatitis C virus (HCV) has a dramatic global impact, with an estimated 50 million people with chronical infection by 2022 and about 1.5 million new infections occurring annually [ 1 ]. While some people with HCV may be asymptomatic, others may …

Valuing health‐related quality of life: an EQ‐5D‐5L value set for Morocco

  • Open Access

Health Technology Assessment (HTA) is a crucial component of healthcare systems, essential for prioritizing interventions and allocating resources effectively [ 1 ]. It involves the systematic evaluation of health technologies, providing …

Feasibility of implementing a codesigned patient reported outcome measures (PROMs) collection system for older adults in acute and sub-acute hospital settings

Healthcare systems are facing the challenge of an ageing population, increased rates of chronic disease and rising healthcare costs [ 1 – 3 ]. This challenge is likely to escalate, with the global number of people aged 60 years and over projected …

Examining differential item functioning in self-reported health survey data: via multilevel modeling

  • Review

Few health-related constructs or measures have received a critical evaluation in terms of measurement equivalence, such as self-reported health survey data. Differential item functioning (DIF) analysis is crucial for evaluating measurement …

Associations between 24-h movement behaviors and health-related quality of life(HRQoL) in preschool children: a cross-sectional study

  • Open Access

Health-related quality of life (HRQoL) is a multidimensional concept that encompasses the physical, mental, and social aspects of health [ 1 ]. Lower HRQoL levels, closely associated with increased risks of conditions like obesity/overweight …

Proxy reporting in health: a scoping review of instructions, perspectives, and reporting experiences

  • Open Access
  • Review

In this review, we explore the instructions provided to informal carers (‘proxies’) completing questionnaires for individuals who are unable to complete questionnaires. By understanding these instructions, informal carers can provide useful …

Placebo response variability on health-related quality of life outcomes in irritable bowel syndrome: an arm-based network meta-analysis

  • Review

Irritable bowel syndrome (IBS) affects 10–15% of the global population [ 1 ]. It is a functional gastrointestinal disorder characterized by abdominal pain, bloating, and altered bowel habits. These symptoms significantly affect patients’ quality of …

Associations between financial toxicity, health-related quality of life, and well-being in Indonesian patients with breast cancer

  • Open Access

Patients with cancer worldwide often face considerable financial burdens [ 1 ]. The experienced financial challenges can adversely impact their financial well-being, which is the perceived ability to sustain living standards and achieve financial …

Long-term health-related quality of life among adolescent and young adult breast cancer survivors

  • Open Access

Adolescents and young adults (AYAs) are defined as individuals aged between 15 and 39 years at the time of their initial cancer diagnosis, according to the US National Cancer Institute [ 1 ]. However, the AYA age range may be defined differently in …

Health-related quality of life after major extremity trauma: qualitative research with military service members and clinicians to inform measurement of patient-reported outcomes

  • Open Access

This study employed a well-established methodology, as described by Kisala and Tulsky [ 42 ], for identifying important HRQOL topics for rehabilitation populations, which utilizes open-ended and free-flowing discussion of the experiences of …

A weighted predictive modeling method for estimating thresholds of meaningful within-individual change for patient-reported outcomes

Thresholds for meaningful within-individual change (MWIC) are crucial for interpreting patient-reported outcomes (PRO) data and evaluating treatment benefits. Traditional methods for determining MWIC threshold can be biased, especially when the …