Call for Papers

ISOQOL » Journals » Call for Papers

The editors of Quality of Life Research are planning two special issues on prominent topics in health related quality of life research.

Those interested in participating in a special issue must submit a letter of intent, and a subset of these letters of intent will be invited to submit a full manuscript.

Methodologies and Considerations for Meaningful Change

The Editors of Quality of Life Research are planning a special issue to define and explore both existing and novel methods for defining meaningful change thresholds for clinical outcomes assessments (COAs) such as patient or clinician reported outcomes measures. Meaningful change, the amount an individual or a group must improve or worsen by to show an effect that patients find meaningful, is important for understanding the efficacy of an intervention. However, there are several methods for defining and determining meaningful change, which vary depending on the research question being addressed and the accompanying study design. Meaningful change thresholds can be derived for:

  • Within-group change: the amount of change a group of participants must show between two timepoints in order to be regarded as having a meaningful change
  • Between-group difference: the amount of change a group of participants must show compared to the change experienced in another group in order to be regarded as having a meaningful difference.
  • Within-individual change: the amount of change any given participant must show on an individual level in order to be regarded as having a meaningful change.

The methods for deriving the above thresholds are many and varied. New methods are also being developed to refine and enhance interpretability or accuracy of meaningful change thresholds. As part of this special issue we are seeking contributions defining, explaining, comparing and evaluating specific meaningful change methodologies. This can include but is not limited to:

  • Mean-based assessment of meaningful change (within/between groups)  using anchors
  • Receiver operating characteristic (ROC) curve-based methods with anchors
  • Predictive modelling-based methods using anchors
  • Latent variable based methods such as Rasch and IRT
  • Graphical methods such as Cumulative Distribution Function curves
  • Qualitative and Mixed methods approaches
  • Appropriate anchor selection
  • Appraising existing literature based thresholds
  • Combining or comparing multiple thresholds

A key point of consideration when developing a paper for this call is to highlight the use of these methods within the context for which they are appropriate. Submitted papers will need to include a clear statement as to whether their method(s) used are appropriate for classifying individuals or groups. This statement will need to be supported by an appropriate ontological or epistemological justification for the use of this method for that level of analysis.

For researchers who would like to present a case study example of their methods using a common simulated dataset, we have selected a dataset for use [information and download at this google drive address http://bit.ly/QLR-MCT, Pip Griffiths, University of Bath, UK]. Although not compulsory, the use of a shared dataset will allow readers to put methodologies in the context of a consistent study. If you intend to use this dataset, the overall dataset will be described in the editorial.

We further encourage all authors to share their data or use publicly available data. We also encourage the sharing of syntaxes of the implemented methods (e.g., as online appendices). This helps readers to understand the implementation of the discussed approaches exactly and offers the opportunity to follow potential worked examples closely. This recommendation and the invitation to use a common simulated dataset should be considered suggestions, not binding recommendations.

To participate in this call, please submit a letter of intent with draft title, contact information and institution for all co-authors, and a structured abstract (300 word maximum). A subset of these letters of intent will be invited to submit a full manuscript.

Anticipated timeline: 

Letters of intent will be accepted and handled on an ongoing basis until the final submission deadline of 22 December 2020. Please email the letters to Jan R. Boehnke (j.r.boehnke@dundee.ac.uk) and Claudia Rutherford (claudia.rutherford@sydney.edu.au).

This special section will be co-edited with guest editors William Lenderking (Evidera) and Andrew Trigg (Adelphi Values). Invitations for full papers will be provided within two weeks after submission of the letter of intent.

After invitation, manuscript submissions will be handled on an ongoing basis and sent out to review. The final deadline for the submission of a first full version of an invited manuscript is the 31 March 2021.

Papers will be published online-first if accepted after normal peer-review. We anticipate to publish the special section in print in Spring 2022.

Reducing research waste in (Health Related) Quality of Life research

The Editors of Quality of Life Research are planning a special issue to illuminate current and innovative state-of-the-art thinking, evidence, and methodological and clinical approaches to reducing research waste in health related quality of life (HRQL) research.

Research waste relating to the production and reporting of health and medical research is a huge problem. “Huge sums of money are spent annually on research that is seriously flawed through the use of inappropriate designs, unrepresentative samples, small samples, incorrect methods of analysis, and faulty interpretation”.1 In 2014, the Lancet series about wastage in medical research estimated that 85% of research is wasted because it asks the wrong questions, is poorly designed, results are inaccessible or not published, and biased reporting.2 In an attempt to reduce waste and maximise efficiency, the Lancet’s REWARD (REduce research Waste And Reward Diligence) Campaign invited everyone involved in research to critically examine how they work to reduce waste and maximise efficiency, and to strive to improve the value of the funds invested in the research we commission, deliver, publish, and implement.3

Despite a number of guidelines developed to encourage better reporting across research designs, research waste continues to be a major problem for HRQL research. In a 2014 review of clinical trials, 27% included a PRO endpoint.4 Of those that did, approximately 39% failed to report their PRO data. Poor design, conduct, analysis and reporting all contribute to PRO research waste. Further, failure to publish PRO results; over-interpretation; selective reporting; the spin; and manipulation of data all contribute to research waste and reduce the benefit of PRO data being realised.

The call for papers:

Whilst the problems of poor research quality and research waste are being studied by the new field of meta-research or “research on research”, the specific consequences for HRQL/PRO research remain relatively underexplored. Much of this HRQL/PRO waste can be avoided or remedied.

In this special issue, we are interested in receiving submissions that focus on reducing HRQL/PRO research waste and optimize HRQL/PRO data. We consider research waste across 5 stages of research production: question selection; study design, conduct and analysis; ethics, regulation and delivery; publication and reporting; and bias and usability of results/reports.5,6 We are looking for innovative theoretical approaches, applications, and research exploring this issue. More specifically, we are looking for manuscripts including but not limited to:

  • Contributions to theoretical, conceptual and empirical approaches to reducing HRQL/PRO research waste and /or consequences of research waste (e.g. harms to patients).
  • Current and new approaches to optimise/maximise the value of HRQL/PRO research (e.g. Knowledge translation and implementation).
  • Current and new approaches to decrease/reduce health related quality of life research waste (e.g. publication of non-significant results).
  • Submissions guiding research users and producers on the use of research reporting guidelines that can be used during the planning, editing, appraising, or reporting of PRO research findings.
  • Conceptual and empirical studies on how strategies to reduce research waste in HRQL/PRO research and practice can improve patient, health service and policy outcomes.

To participate in this call, please submit a letter of intent with draft title, contact information and institution for all co-authors, and a structured abstract (300 word maximum). A subset of these letters of intent will be invited to submit a full manuscript.

Anticipated timeline: 

Letters of intent will be accepted and handled on an ongoing basis until the final submission deadline of 28 February 2021. Please email the letters to Claudia Rutherford (claudia.rutherford@sydney.edu.au) and Jan R. Boehnke (j.r.boehnke@dundee.ac.uk).

After invitation, manuscript submissions will be handled on an ongoing basis and sent out to review. The final deadline for the submission of a first full version of an invited manuscript is the 30 June 2021.

Papers will be published online-first if accepted after normal peer-review. We anticipate to publish the special section in print in Autumn 2022.

References

  1. Altman DG. The scandal of poor medical research. BMJ. 1994; 308:283. DOI: 10.1136/bmj.308.6924.283 pmid:8124111
  2. www.thelancet.com/series/research
  3. https://www.thelancet.com/campaigns/efficiency/statement
  4. Vodicka EKim KDevine EB, et al. Inclusion of patient-reported outcome measures in registered clinical trials: Evidence from ClinicalTrials.gov Contemp Clin Trials.2015; 43: 1-9. DOI: 10.1016/j.cct.2015.04.004.
  5. Macleod MR, Michie S, Roberts I, et al. Biomedical research: increasing value, reducing waste. Lancet. 2014;383(9912): 101-4.
  6. Glasziou P, Altman DG, Bossuyt P, et al. Reducing waste from incomplete or unusable reports of biomedical research. Lancet. 2014;383(9913): 267-76.

The International Society for Quality of Life Research (ISOQOL) is a global community of researchers, clinicians, health care professionals, industry professionals, consultants, and patient research partners advancing health related quality of life research (HRQL).

Together, we are creating a future in which patient perspective is integral to health research, care and policy.