Health-Related Quality of Life

Overview

Health-related quality of life (HRQoL), also written as HRQOL or HRQL, is a patient-centered clinical metric used to assess how a health condition, symptoms, disability, or treatment affects a person’s perceived physical, emotional, social, and functional well-being. Unlike disease-specific endpoints such as survival, laboratory values, or imaging findings, HRQoL captures the lived impact of illness and care from the patient’s perspective. It is widely used in oncology, transplantation, neurology, gastroenterology, rehabilitation, and chronic disease management, where treatment benefit may include symptom relief, preserved function, or improved daily living rather than cure alone.

In biomedical research, HRQoL is typically measured with patient-reported outcome instruments and related digital tools. It is especially important in conditions such as obesity, cardiovascular disease, COVID-19, heart failure, large ischemic stroke, liver cancer, multiple myeloma, and cancer survivorship, where treatment burden, adverse effects, anxiety, fatigue, pain, and functional limitations can substantially alter quality of life. HRQoL is also frequently used to evaluate the impact of therapies such as neoadjuvant or adjuvant chemotherapy, endovascular thrombectomy, focal high-intensity focused ultrasound, and app-facilitated palliative care interventions.

Focus of Latest Publications

Recent publications show HRQoL being used as a primary or key secondary outcome across a broad range of clinical settings. In living donor liver transplantation, a retrospective cohort study compared health-related quality of life after pure laparoscopic versus open donor hepatectomy in a low-volume center, noting that long-term HRQoL evidence after pure laparoscopic donor hepatectomy remains scarce. In liver transplantation more broadly, a U.S. multicenter study of liver transplant candidates linked financial burden with financial distress, work impairment, and financial toxicity, explicitly framing this burden as a health-related quality-of-life issue.

In neurology and autoimmune disease, HRQoL was used to assess treatment benefit in generalized myasthenia gravis: a pre-specified analysis of the phase 3 Vivacity-MG3 study evaluated nipocalimab versus placebo and its effect on HRQoL. In spinal cord injury research, a pilot randomized controlled trial of non-invasive spinal cord stimulation was designed to examine autonomic recovery outcomes, including lower urinary tract, bowel, and sexual function, alongside HRQoL. Similarly, a study protocol in polymyalgia rheumatica/giant cell arteritis tested whether supplemental hydrocortisone during stress could improve HRQoL in patients with prednisolone-induced adrenal insufficiency.

Cancer-related research accounted for a large share of the recent literature. In pediatric oncology, investigators developing oncology-specific patient-reported outcome dashboards emphasized that PROMs are essential for monitoring HRQoL in children with cancer. In pancreatic cancer, a nationwide analysis examined how age influences quality of life, 90-day mortality, adjuvant chemotherapy use, and survival after treatment for localized disease, with HRQoL remaining an important unresolved outcome in older patients. In esophageal and gastric cancer survivorship, persistent symptoms and functional limitations were described as affecting HRQoL, and a population-based study examined factors associated with self-care engagement in survivors. In advanced cancer, a randomized clinical trial of digital self-management of symptoms and quality of life highlighted that symptom burden impairs HRQoL and contributes to emergency department visits and hospitalizations.

Several studies focused on treatment-related HRQoL changes. In prostate cancer, a prospective multicenter study of focal high-intensity focused ultrasound assessed patient-reported quality of life and psychological distress after focal hemiablation, noting that prospective HRQoL data remain limited. In breast cancer, analysis from ECOG-ACRIN EAZ171 evaluated whether patient-reported taxane-induced peripheral neuropathy predicted dose reductions or longer-term declines in HRQoL and physical function. In head and neck cutaneous squamous cell carcinoma, multidisciplinary care was associated with only minimal impact on disease-specific HRQoL, with generic quality-of-life scores changing little pre- to post-treatment. In thyroid cancer, a utility index development study was motivated by the persistent burdens that diminish HRQoL in survivors.

HRQoL was also central in chronic disease and survivorship research outside oncology. In cystic fibrosis, a 12-month multicenter cohort study reported real-world improvements in HRQoL after elexacaftor/tezacaftor/ivacaftor, alongside better lung function, body mass index, and symptom control. In axial spondyloarthritis, bimekizumab was associated with sustained improvements in symptoms and HRQoL over three years. In obesity, multiple studies examined HRQoL in relation to metabolic bariatric surgery, weight loss interventions, and weight trajectories; one qualitative study in Singapore described obesity as a multifaceted health problem affecting many aspects of HRQoL, while another study assessed excess daytime sleepiness, daily functioning, and HRQoL during the first year after bariatric surgery. A longitudinal cohort from the Tehran Lipid and Glucose Study also examined associations between individual and spousal weight trajectories and HRQoL.

In transplantation and hematology, HRQoL was used to capture recovery and longer-term patient experience. A multicenter prospective study of nonmyeloablative HLA-identical sibling transplant for sickle cell disease in children found that patient-reported HRQoL remained stable early after hematopoietic cell transplantation and improved significantly at one year. In pediatric liver transplant recipients, quality-of-life assessment was paired with anxiety risk screening, showing how HRQoL instruments can be used alongside mental health measures. In myeloma, a decentralized real-world monitoring study of SARS-CoV-2 booster vaccines and COVID-19 outcomes reported no significant differences in HRQoL over time or by history of infection.

Other recent studies linked HRQoL to symptoms, function, and patient experience in diverse conditions. In spina bifida, urinary and bowel incontinence were associated with emotional functioning and HRQoL in young adults. In menopausal health, the Mi Menopausia app study evaluated vasomotor symptoms and their impact on HRQoL in peri- and postmenopausal women. In headache disorders, a conceptual framework was developed to assess HRQoL and treatment effectiveness from the patient perspective. In pituitary disease, a specialized pituitary clinic was compared with general endocrinology care for HRQoL, illness perception, and outpatient satisfaction. In retinoblastoma survivors with ocular prostheses, HRQoL and visual function were assessed to address gaps in knowledge about lived experience and functional vision. In ulcerative colitis, artificial intelligence-based endoscopic scoring was compared with conventional scoring for agreement with symptoms and HRQoL. Across these studies, HRQoL served as a common endpoint linking disease burden, treatment effects, and patient-centered outcomes.

Key Publications

• Jul Comparison of Health-Related Quality of Life After Pure Laparoscopic vs Open Donor Hepatectomy in a Low-Volume Living Donor Liver Transplantation Center: A Retrospective Cohort Study. (Annals of transplantation, 2026, PMID 42374721): "However, evidence on long-term health-related quality of life (HRQoL) following PLDRH is scarce, particularly in low-volume centers."
• Jul Financial burden among liver transplant candidates is associated with financial distress and work impairment: A U.S. multicenter study. (Hepatology communications, 2026, PMID 42372189): "(3) financial toxicity (health-related quality of life, HRQOL)."
• Jun Health-related quality of life outcomes with nipocalimab versus placebo in generalized myasthenia gravis: an analysis of the Vivacity-MG3 study. (Journal of neurology, 2026, PMID 42360473): "This pre-specified analysis of the phase 3 Vivacity-MG3 study (NCT04951622) assessed the effect of nipocalimab (fully human anti-FcRn monoclonal antibody) on HRQoL in patients with gMG."
• Jun Designing oncology-specific patient-reported outcome dashboards: end-user preferences for reference curve inclusion and visualization in pediatric cancer care. (Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2026, PMID 42347858): "Patient Reported Outcome Measures PROMs are essential for monitoring health-related quality of life (HRQoL) in pediatric oncology."
• Jun The impact of age on quality of life, 90-day mortality, adjuvant chemotherapy, and survival after treatment for localized pancreatic cancer: A nationwide analysis. (European journal of cancer (Oxford, England : 1990), 2026, PMID 42208281): "their impact on health-related quality of life (HRQoL) and overall survival (OS) in older patients remains unclear."
• Jun Factors associated with self-care engagement among oesophageal and gastric cancer survivors: a population-based cross-sectional study. (Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2026, PMID 42334670): "Survivors of oesophageal and gastric cancer frequently experience persistent symptoms and functional limitations that affect their health-related quality of life (HRQL)."
• Jun Nonmyeloablative HLA-identical sibling transplant for sickle cell disease in children: a multicenter prospective study. (Blood advances, 2026, PMID 41945757): "Patient-reported health-related quality of life remained stable early after HCT and significantly improved at 1 year."
• Jun The association of daily urinary and bowel incontinence with emotional functioning in young adults with spina bifida: an ecological momentary assessment study. (Journal of rehabilitation medicine, 2026, PMID 42307020): "Urinary and bowel incontinence are common in young adults with spina bifida and may affect emotional functioning and health-related quality of life."
• Jun Excess daytime sleepiness, daily functioning and health-related quality of life during the first year after metabolic and bariatric surgery in patients with a known and unknown obstructive sleep apnea status. (Sleep & breathing = Schlaf & Atmung, 2026, PMID 42298204): "This study aimed to compare these strategies on excess daytime sleepiness (EDS), its impact on daily functioning and health-related quality of life (HRQoL)."
• Jun Health-related quality of life of people with obesity who have and have not received metabolic bariatric surgery: a qualitative study in Singapore. (Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2026, PMID 42295431): "Obesity is a multi-faceted health problem impacting many aspects of health-related quality of life (HRQoL)."