'The disease ruined my life': a qualitative study of the quality of life in women with uterine fibroids

Uterine fibroids are difficult to live with because it affects women in many ways and impact their quality of life. The purpose of the current study was to explore the quality of life in women with uterine fibroids.

Published in Biomedical Research

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We did a study asking women to explore how uterine fibroids affected their day-to-day life. The findings showed that women were suffering beyond expectations. While women expressed devastating experiences due to the disease, they also indicated some positive elements in their day-to-day living. Perhaps we need a better understanding of what women experience due to the fibroids.  

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Patient experience data in regulatory and health technology assessment

Globally, regulatory and health technology assessment (HTA) bodies recognise the importance of hearing from patients when products are being developed and evaluated. Patient-reported outcomes and other clinical outcome assessments are increasingly included in submissions to these bodies. Additionally, recent regulatory guidance also discusses the collection of patient preference information. This broader conceptualisation can be termed 'patient experience data' (PED). Despite this recognition, patient experience data are inconsistently included and evaluated by decision-makers. Understanding how different interest-holders approach this is essential for ensuring that patients' voices drive healthcare decisions to ultimately improve patient outcomes and health-related quality of life.

This article collection encourages submissions that consider the assessment of patient experience, such as preference, symptoms, and health-related quality of life, to inform regulatory and HTA submissions and decisions. Submissions of original research, reviews and discussion and/or response papers addressing recent regulatory and HTA developments in the field are encouraged. Other potential topics for manuscripts may include the application of artificial intelligence and digital health technology in PED research.

Publishing Model: Hybrid

Deadline: Jun 30, 2027

Quality of life in people with mental disorders – beyond global scores

The World Health Organization's 65th World Health Assembly stated that the global burden of mental disorders accounts for 25–33% of all disabilities and highlighted the substantial impact on family members and carers. The WHO's "Comprehensive mental health action plan 2013–2030" stresses the lack of adequate health service provision in this area. Research into evaluating the efficacy and effectiveness of interventions and mental health services often focus on measures of symptom severity as key outcomes. But policy agendas as well as patients’ views suggest considering impacts beyond pure symptom load including a broad range of experience and a consideration of a dimension of "recovery". The assessment of health-related quality of life and quality of life ((HR)QoL) and interventions targeting these constructs have been articulated as a way to improve treatment outcomes during mental health service provision.

The purpose of this article collection is to increase the awareness of and reliance on the multidimensional nature of (HR)QoL by moving beyond global (HR)QoL scores, both in research as well as applied (clinical) settings.

For the purposes of this call, we conceptualize people living with "mental disorders" broadly, as for example in line with diagnoses (DSM, ICD), transdiagnostic approaches, or being in treatment that focuses on their remediation.

In this article collection we encourage submissions of research and clinical practice using nuanced approaches to (HR)QoL in people living with mental disorders. We envisage that such papers will increase our understanding of (HR)QoL in diverse settings and samples, which may also prompt the reshaping of interventions and services to target specific (HR)QoL deficits or increase capabilities.

To contribute to this nuanced discussion, submissions should firstly position their research clearly as addressing QOL or HRQL. While authors are invited to position their research in other relevant frameworks, the editors suggest as a reference point the WHO (1994) definition of QoL as “an individual’s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards, and concerns”; and the HRQL focus on the impacts of health conditions, their consequences, and treatments on multiple aspects of people’s quality of life, such as for example level of ability, daily functioning, and ability to experience a fulfilling life.

Secondly, many (HR)QoL instruments have been developed as multidimensional tools, offering insights into several related domains at a time. A brief, non-exhaustive list of examples of instruments measuring multiple (HR)QoL dimensions are the WHOQoL (psychological health, physical health, environment, social relationships); the SF-36 (physical functioning, physical role limitations, bodily pain, general health perceptions, energy/vitality, social functioning, emotional role limitations); the MANSA (Life and Health, Living Environment); the MSQoL (physical health, vitality, psychosocial, affective, material satisfaction, spare time). Any paper submitted to the call should use appropriate methods to test claims about the multidimensional nature of their approach, at least as supporting or sensitivity analyses.

Eligible manuscripts may focus on:

- investigating the potential causal impact of interventions or service provision models on particular dimensions of (HR)QoL; such submissions may use confirmatory or exploratory approaches and use data from controlled or naturalistic settings;

- the understanding of the nature, appropriateness, or other aspects of the meaning and use of these dimensions in, or ideally with, the target population, using in-depth explorations through qualitative inquiries;

- examining different factors (i.e., sociodemographic, psychosocial, clinical) that may act as longitudinal determinants of, or display associations with, (HR)QoL dimensions in people with mental disorders; especially encouraged are explorations relating to social determinants, inequities and inequalities that matter in the particular research and service contexts;

- performing investigations of the viability of domain scores with contemporary psychometric methods (e.g., via confirmatory bifactor analyses or other models that allow to gauge the differential contribution of domains of an instrument);

- explaining the use of domain information in practice contexts by focusing the interventions only on specific domains where patients report major difficulties (i.e. social relationships; employment);

- performing investigations and develop methodological proposals on how to research relationships between measures of the severity of mental disorder (symptoms) and (HR)QoL, with often overlapping item content in measures of both constructs (DOI: 10.1007/s40273-020-00972-w);

- comparing QoL dimensions across people with different diagnoses of mental illness (i.e., schizophrenia-spectrum, mood, anxiety disorders, etc.);

- relating QoL dimensions to dimensional measures of mental illness (e.g., HiTOP or network approaches;

- comparing QoL dimensions across people with mental disorders that may attend different service settings, or may be at different time points of their condition course (i.e. first-episode, chronic patients; inpatients/outpatients, etc.);

- presenting the findings of systematic reviews/meta-analyses of the available evidence regarding the QoL dimension levels, and/or associated factors in people with mental disorders.

Manuscripts may use original data or provide evidence based on secondary analyses. Submissions should employ reporting guidelines relevant to the type of study and applied methodology to transparently and completely report their research. The standard word limit of 4,000 words applies, but it is common for submissions to Quality of Life Research to contain substantial electronic supplements or link out to repository resources to provide all necessary information to understand and engage with the reported research. The use of (pre-)registrations and open science techniques is strongly encouraged to increase transparency and the potential for re-use.

Participation in the article collection:

Submissions of full papers in line with QLR's submission guidelines will be possible from 01.11.2024 in our online submission portal. There is currently no definite end date and we envisage the collection to be open for at least a year.

A submission of a letter of intent is not necessary. If helpful for authors, they are invited to submit a letter of intent for pre-evaluation during this period. A letter should contain a draft title, contact information and institution for all co-authors, and a structured abstract (500 word maximum) that provides detailed information about the manuscript to support the evaluation. Please email the letter to Dr. Brittany Lapin (lapinb@ccf.org) and Dr. Eleni Petkari (epetkari@uma.es) These letters will be handled on an ongoing basis and feedback (invitation to submit the full paper vs. rejection) will be provided within two weeks.

Papers will be published online as part of the collection if accepted after a single-blind peer-review process. Published articles will be allocated to issues on an ongoing basis as soon as possible thereafter.

Publishing Model: Hybrid

Deadline: Jun 30, 2026