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Relating Experienced To Recalled breathlessness Observational (RETRO) study: a prospective study using a mobile phone application
  1. Jacob Sandberg1,
  2. Robert Lansing2,
  3. Peter Anderberg3,
  4. David Currow4,5,
  5. Josefin Sundh6,
  6. Zainab Ahmadi1,
  7. Sebastian Palmqvist7 and
  8. Magnus Ekström1
  1. 1 Department of Clinical Sciences, Division of Respiratory Medicine and Allergology, Lund University, Lund, Sweden
  2. 2 Department of Psychology, University of Arizona Tucson, Arizona, USA
  3. 3 Department of Health, Blekinge Institute of Technology, Karlskrona, Sweden
  4. 4 Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, UK
  5. 5 IMPACCT, Faculty of Health, University of Technology Sydney, Sydney, Australia
  6. 6 Department of Respiratory Medicine, School of Medical Sciences, Örebro University, Örebro, Sweden
  7. 7 Clinical Memory Research Unit, Sweden, Lund, University, Neurology Clinic, Skåne University Hospital, Sweden, Europe
  1. Correspondence to Dr Jacob Sandberg; jacob.sandberg{at}


Background Breathlessness, the subjective sensation of breathing discomfort, is common and appears in the daily life of people with cardiorespiratory diseases. Physicians often rely on patient’s history based on symptom recall. The relation between recalled and experienced breathlessness is still poorly understood. This paper presents the protocol for a study primarily aimed at evaluating the relationship between experienced breathlessness and (1) recalled breathlessness and (2) predicted future breathlessness.

Methods A mobile phone application will be used to collect data during daily life. Medically stable participants, ≥18 years of age with mean daily breathlessness of Numerical Rating Scale (NRS) 3/10 and able to use a mobile phone with internet will rate their breathlessness intensity on a 0–10 NRS prompted the user several times daily for 1 week. Participants will recall their breathlessness each day and week. Multivariable random effects regression models will be used for statistical analyses.

Results Results of the study will be submitted for publication in peer-reviewed journals and presented at relevant conferences.

Discussion This protocol describes a study aimed at investigating previously unknown areas of the experience and recall of breathlessness using a new method of data collection.

Registration details Prospectively registered with (Nr: NCT03468205).

Ethics and dissemination The study has received ethical approval from the Regional Ethical Review Board Lund (DNr 2017/149). After a general study information including that participation is entirely voluntary, participants will answer the eligibility criteria and be asked to consent to participate before entering the study questions. Written informed consent to participate will be obtained for participants in the clinical sub-cohort. Participation can be discontinued at the discretion of the participant in which case no further data will be collected.

  • breathlessness
  • dyspnoea
  • recall
  • mobile phone application
  • app
  • cohort study

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  • Contributors ME and JS contributed to the conception and drafting of the article. All authors contributed to the study design and revised the article for important intellectual content and approval of the version to be published.

  • Funding Jacob Sandberg was funded by an unrestricted grant from the Scientific Committee of Blekinge County Council. Magnus Ekström was supported by unrestricted grants from The Swedish Society of Medicine, the Swedish Respiratory Society, the Swedish Heart-Lung Foundation, the Scientific Committee of Blekinge County Council, the Wera and Emil Cornell Foundation, and the Swedish Society for Medical Research.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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