Journal of Patient-Reported Outcomes

Abstract Background The EuroQol Health and Wellbeing (EQ-HWB™) measures quality-of-life (QoL) across healthcare and social care settings. Its framework integrates physical, social, and psychological domains, shaped by cultural influences. Despite global validation, evidence supporting its applicability in Asian contexts, particularly in Hong Kong, is limited. This study evaluated the face validit…

Patient-reported outcome measures (PROMs) are widely used in oncologic care, yet it remains unclear to what extent they capture the depth and contextual meaning of patient experience in gynecologic oncology. To explore gynecologic oncology patients’ narratives of treatment experience, needs, and psychosocial impacts, and to examine how these narratives align with domains covered by commonly used …

Apps and web browsers, whether on smartphones, tablets or laptops, have become the mainstream methods of capturing clinical outcome assessment (COA) data, and patient-reported outcome measures (PROMs) in particular, in clinical trials. There has long been concern around whether implementing traditionally paper-based questionnaires on electronic systems may impact the measurement properties of the…

Recent advances in treatment for type 1 (T1D) and type 2 diabetes (T2D) may have an impact on patients’ treatment satisfaction, which can affect adherence and outcomes. Established patient-reported outcome (PRO) measures of treatment satisfaction may not be sensitive to the treatment attributes and outcomes that are relevant and important to patients receiving new diabetes medications. The purpos…

Consumers were generally supportive of using the modular approach in administering PROMs in clinical trials, while also identifying ways to strengthen its acceptability. These included the need for clearer consensus and guidance on what constitutes a well-justified selection of domains and further personalisation of PROM domains (e.g., through branching questions). These insights can help inform …

This study aimed to compare emotional quality-of-life among young transgender men who underwent chest masculinizing surgery before or after the age of 18, with a minimum postoperative follow-up of two years. Secondary objectives included comparison of surgical satisfaction and variation of quality-of-life depending on the number of years since the surgery. This cross-sectional, multicenter study …

Given that sleep disturbance and fatigue are pervasive among patients with advanced ovarian cancer (OC) and associated with poor health-related quality of life (HRQoL), several patient-reported outcome measures have been used to assess symptom burden. However, it remains unclear which patient-reported topic domains are most important to HRQoL for advanced OC patients. This study aimed to assess t…

We generated a list of health utility values for five pre-defined breast cancer health states using EQ-5D-5L. Additional research is required to confirm the validity of EQ-5D-5L as an outcome measure in breast cancer.

Evaluations of complex interventions are increasingly used within the health and social sciences and form an integral part of the ongoing research into person-centred care (PCC). The longitudinal nature of these interventions, measuring multiple outcomes over time, is often challenged by traditional economic frameworks when informing decision-makers. Therefore, the aim of this study is to explore…

The COST is provisionally recommended for measuring financial toxicity in cancer patients. The methodological quality and measurement properties of existing financial toxicity instruments still require further improvement. Future research should adhere strictly to the COSMIN guideline to validate existing tools or develop new, high-quality instruments with comprehensive evaluations of their measu…

Gestational diabetes mellitus (GDM) is the most common medical complication in pregnancy. Its onset puts a heavy strain on the positive connotation of pregnancy and is accompanied by feelings of fear, uncertainty, stress, a sense of losing control, a poorer perception of health and a reduced quality of life (QoL). QoL has a significant impact on the success of therapy because of its link to adher…

The Multiple Myeloma Symptom and Impact Questionnaire (MySIm-Q) is a validated, disease-specific patient-reported outcome (PRO) instrument that measures symptoms and impacts experienced by patients with multiple myeloma (MM). We describe key measurement properties of the MySIm-Q instrument using CARTITUDE-4 data. The phase 3 CARTITUDE-4 (NCT04181827) trial compares ciltacabtagene autoleucel with …

Health professionals in Greece face barriers in assessing child and adolescent mental health conditions due to the lack of instruments with evidence of validity in local samples. This study addresses this gap by evaluating the psychometric properties and establishing common norms for six globally recognized mental health tools in Greece: the Child and Adolescent Trauma Screen-2 (CATS-2), Pediatri…

This review explores the use of PROMs in assessing HRQoL in acromegaly patients, emphasizing the need for specific, validated, and culturally adapted tools addressing symptoms and treatment impact. We propose a novel domain-based classification to overcome existing limitations of instruments and improve their presentation in future studies. This study provides a synthesis that helps advance resea…

Patient-reported experience measures are valuable instruments for assessing care quality in alignment with the Triple Aim framework. We sought to validate the PREM-PS questionnaire (Patient Reported Experience Measure – Prenatal Screening) by evaluating its psychometric properties (structural validity, internal consistency, and cross-cultural validity) for Canadian French-and English-speaking pop…

Artificial intelligence (AI) has the potential to revolutionise the delivery of ophthalmic healthcare worldwide. Whether AI is making a meaningful difference or is acceptable for patients, however, remains unclear. Patient reported outcomes (PROs) allow researchers to answer these questions and smooth the path to clinical deployment. This review aims to investigate how PROs are being applied to t…

Carers, including family members and companions, play a crucial role in supporting patients and sharing insights about their care experiences. Their influence is especially important in virtual hospital models, where patients receive remote hospital-level care using digital technologies. However, there is limited evidence examining what carers think about virtual hospitals or how their experience…

The Patient-Reported Outcomes Measurement Information System (PROMIS®) provides standardized, generic measures to assess self-reported aspects of physical, mental, and social health. While PROMIS parent-proxy measures exist in multiple languages, evaluations outside the U.S. are limited. This study evaluated psychometric properties and provided Dutch reference values for PROMIS parent-proxy measu…

The findings highlight a substantial disease burden and significant unmet needs among FSHD patients. Early diagnosis, approval of targeted therapies, and comprehensive support from families, healthcare systems, and society are imperative. These measures are essential to improve health outcomes and quality of life for this patient population.