Department of Public Health

Research Centre for Patient Involvement

 Department of Public Health Research Centre for Patient Involvement Research Focus PRO & SMS Interventions

PRO & SMS Interventions

Illustration of Research Focus

Interventions supporting patients' own involvement in the management of their health problems can include the use of patient-reported outcomes (PROs), staff training in patient-centred care and prompts for patients and their families relating to management at home.

PRO is a measurement of any aspect of a patient’s health status that comes directly from the patient without a health professional or anyone else interpreting the patient’s response.

The patient perspective can only be evaluated by the patients themselves. Thus, PRO measures have the potential to measure what matters to patients in everyday life. If PRO measures are actively used in the interaction between a patient and a healthcare professional, they could be a means to involve the patient and increase the patient's self-management (SM).

Self-management support (SMS) is the assistance caregivers provide to patients with chronic disease or other health issues in order to encourage daily decisions that improve health-related behaviours and clinical outcomes.

PRO Intervention Studies

Effect of PRO Interventions in Clinical Practice: RCT Studies and Prospective Non-Randomised Controlled Studies
Rheumatoid Arthritis   Resources, Contacts & Publications

Tele‐Health Followup Strategy for Tight Control of Disease Activity in Rheumatoid Arthritis: Results of a Randomized Controlled Trial - Thurah - 2018 - Arthritis Care & Research - Wiley Online Library

ResCenPI contact: Annette de Thurah

  • de Thurah A, Stengaard-Pedersen K, Axelsen M, Fredberg U, Schougaard LMV, Hjollund NHI, Pfeiffer-Jensen M, Laurberg TB, Tarp U, Lomborg K, Maribo T. Tele-Health Followup Strategy for Tight Control of Disease Activity in Rheumatoid Arthritis: Results of a Randomized Controlled Trial. Arthritis Care Res (Hoboken). 2018 Mar;70 (3): 353-360. doi: 10.1002/acr.23280. Epub 2018 Jan 23.
Epilepsy Resources, Contacts & Publications

Patient-initiated versus fixed-interval patient-reported outcome-based follow-up in outpatients with epilepsy: a pragmatic randomized controlled trial | Journal of Patient-Reported Outcomes | Full Text (springeropen.com)

ResCenPI contact: Liv Schougaard

  • Schougaard LMV, Mejdahl CT, Christensen J, Lomborg K, Maindal HT, de Thurah A, Hjollund NH. Patient-initiated versus fixed-interval patient-reported outcome-based follow-up in outpatients with epilepsy: a pragmatic randomized controlled trial. J Patient Rep Outcomes. 2019 Sep 13; 3 (1): 61. doi: 10.1186/s41687-019-0151-0.
Diabetes Resources, Contacts & Publications 

Randomized controlled study to evaluate the impact of flexible patient‐controlled visits in people with type 1 diabetes: The DiabetesFlex Trial - Laurberg - - Diabetic Medicine - Wiley Online Library

ResCenPI contact: Annesofie Lunde Jensen

  • Laurberg T, Schougaard LMV, Hjollund NHI, Lomborg KE, Hansen TK, Jensen AL. Randomized controlled study to evaluate the impact of flexible patient-controlled visits in people with type 1 diabetes: The DiabetesFlex Trial. Diabet Med. 2022 Jan 13: e14791. doi: 10.1111/dme.14791. Epub ahead of print.
Cancer Resources, Contacts & Publications

Effect of patient-reported outcomes as a dialogue-based tool in cancer consultations on patient self-management and health-related quality of life: a clinical, controlled trial: Acta Oncologica: Vol 0, No 0 (tandfonline.com)

ResCenPI contact: Pernille Skovlund

  • Skovlund PC, Vind Thaysen H, Schmidt H, Alsner J, Hjollund NH, Lomborg K, Nielsen BK. Effect of patient-reported outcomes as a dialogue-based tool in cancer consultations on patient self-management and health-related quality of life: a clinical, controlled trial. Acta Oncol. 2021 Dec; 60 (12): 1668-1677. doi: 10.1080/0284186X.2021.1962972. Epub 2021 Aug 17. 

Cancer follow-up supported by patient-reported outcomes in patients undergoing intended curative complex surgery for advanced cancer | Journal of Patient-Reported Outcomes | Full Text (springeropen.com)

ResCenPI contact: Sissel Ravn

  • Ravn S, Thaysen HV, Verwaal VJ; HIPEC ePRO collaborative at Aarhus University Hospital, Seibæk L, Iversen LH. Cancer follow-up supported by patient-reported outcomes in patients undergoing intended curative complex surgery for advanced cancer. J Patient Rep Outcomes. 2021 Nov 8; 5 (1):1 20. doi: 10.1186/s41687-021-00391-1.
Effect of PRO Interventions in Clinical Practice: RCT Protocols/Feasibility Studies
Kidney Resources, Contacts & Publications

Remote follow-up using patient-reported outcome measures in patients with chronic kidney disease: the PROKID study – study protocol for a non-inferiority pragmatic randomised controlled trial | BMC Health Services Research | Full Text (biomedcentral.com)

ResCenPI contact: Birgith Engelst Grove

  • Grove BE, Ivarsen P, de Thurah A, Schougaard LM, Kyte D, Hjøllund NH. Remote follow-up using patient-reported outcome measures in patients with chronic kidney disease: the PROKID study - study protocol for a non-inferiority pragmatic randomised controlled trial. BMC Health Serv Res. 2019 Sep 4; 19 (1): 631. doi: 10.1186/s12913-019-4461-y.
Rheumatoid Arthritis Resources, Contacts & Publications

The effectiveness of e-learning in patient education delivered to patients with rheumatoid arthritis: The WebRA study—protocol for a pragmatic randomised controlled trial | BMC Rheumatology | Full Text (biomedcentral.com)

ResCenPI contact: Line Raunsbæk Knudsen

  • Raunsbæk Knudsen L, Lomborg K, Ndosi M, Hauge EM, de Thurah A. The effectiveness of e-learning in patient education delivered to patients with rheumatoid arthritis: The WebRA study-protocol for a pragmatic randomised controlled trial. BMC Rheumatol. 2021 Dec 20; 5 (1): 57. doi: 10.1186/s41927-021-00226-y.
Cancer Resources, Contacts & Publications

Electronic symptom monitoring in patients with metastatic lung cancer: a feasibility study | BMJ Open

ResCenPI contact: Rasmus Blechingberg Friis

  • Friis RB, Hjollund NH, Mejdahl CT, Pappot H, Skuladottir H. Electronic symptom monitoring in patients with metastatic lung cancer: a feasibility study. BMJ Open. 2020 Jun 17;10(6):e035673. doi: 10.1136/bmjopen-2019-035673. 

Professional Organisations & Conferences

ISOQOL

International Society for Quality of Life Research (ISOQOL): https://www.isoqol.org/

Mission

ISOQOL's mission is to advance the science of quality of life (QOL) and related patient-centred outcomes (PCOs) in health research, care and policy.

Vision

ISOQOL will improve QOL for people everywhere by creating a future in which their perspective is integral to health research, care and policy.

Patient Engagement

ISOQOL supports the patient voice in QOL and PRO research. Patient engagement initiatives are intended to align ISOQOL’s priorities and infrastructure with efforts to establish best practice in patient engaged QOL research and create educational efforts and model programmes that promote best practice and fulfil ISOQOL’s mission.

ePROVIDE

The ePROVIDE platform centralises all Mapi Research Trust resources and services, which help develop the endpoint strategy or identify the right outcomes for a study.

Subscriptions - ePROVIDE™ (mapi-trust.org)

HealthyQOL.com

HealthyQOL's Quality of life (QOL) assessments include questions that help to measure what matters to individuals about their quality of life, healthcare experiences, physical, mental and social health:

healthyqol.com

PROMIS

PROMIS is a rigorously tested patient reported outcome (PRO) measurement tool that uses recent advances in information technology, psychometrics, and qualitative, cognitive, and health survey research to measure PROs such as pain, fatigue, physical functioning, emotional distress, and social role participation that have a major impact on quality-of-life across a variety of chronic diseases:

PROMIS: Clinical Outcomes Assessment (nih.gov)

PROTEUS

The PROTEUS Consortium promotes tools and resources to optimise the use of patient-reported outcomes (PROs) in clinical trials to ensure that patients, clinicians, and other decision-makers can make the best decisions about treatment options:

PROTEUS (bham.ac.uk) 

COSMIN

COSMIN helps select the most suitable outcome measurement instruments. COSMIN aims to improve the selection of outcome measurement instruments both in research and in clinical practice by developing methodology and practical tools for selecting the most suitable outcome measurement instrument:

COSMIN - Improving the selection of outcome measurement instruments

Revised 02.01.2024
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Web team at Health