Evidence map›Paper›PMID 40536596›Full record

ArticleJournal of patient-reported outcomes2025

Development of a unified system for assessing health related quality of life across the cancer care continuum: the EUonQoL Delphi study to identify priorities for quality of life domains.

Maike G Sweegers, Esther de Jongh, Christopher Bedding, Emma Nicklin, Daniela Doege, Sara Alfieri, Laura Gangeri, Bianca Scacciati, Augusto Caraceni, Cinzia Brunelli and 19 more

Abstract read
In one paragraph

Article in Journal of patient-reported outcomes, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
4citing papers in PubMed, 1 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

4 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Health-related quality of life domains relevant to people in Europe undergoing cancer treatment: a systematic review of qualitative research.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026
    Pooled it
  2. Article
  3. Measuring health-related quality of life in infants and toddlers: conceptual challenges and proposed recommendations.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026
    Article
  4. Cancer-related fatigue in cancer survivors: an updated clinical practice review for healthcare providers.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2026
    Review
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

29 authors.

Maike G SweegersDivision of Psychosocial Research and Epidemiology, The Netherlands Cancer Institute, Amsterdam, The Netherlands. m.sweegers@nki.nl.
Esther de JonghDivision of Psychosocial Research and Epidemiology, The Netherlands Cancer Institute, Amsterdam, The Netherlands.
Christopher BeddingLeeds Institute of Medical Research at St James's, University of Leeds, Leeds, UK.
Emma NicklinLeeds Institute of Medical Research at St James's, University of Leeds, Leeds, UK.
Daniela DoegeUnit of Cancer Survivorship, Division of Clinical Epidemiology and Aging Research, German Cancer Research Center (DKFZ), Heidelberg, Germany.
Sara AlfieriClinical Psychology Unit, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan, Italy.
Laura GangeriClinical Psychology Unit, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan, Italy.
Bianca ScacciatiClinical Psychology Unit, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan, Italy.
Augusto CaraceniUniversità degli studi di Milano Dipartimento di Scienze Cliniche e di Comunità, Dipartimento di Eccellenza, 2023-2027, Milan, Italy.
Cinzia BrunelliPalliative Care, Pain Therapy and Rehabilitation Unit, Fondazione IRCCS Istituto Nazionale Tumori-Milano, Milan, Italy.
Anne BredartPsycho-Oncology Unit, Institut Curie, Paris, France.
Leslye Rojas-ConchaPalliative Care Research Unit, Department of Geriatrics and Palliative Medicine GP, Copenhagen University Hospital - Bispebjerg and Frederiksberg, University of Copenhagen, Copenhagen, Denmark.
Helle PappotDepartment of Oncology, Copenhagen University Hospital - Rigshospitalet, Institute of Clinical Medicine, University of Copenhagen, Copenhagen, Denmark.
Giovanni ApoloneScientific Directorate, Fondazione IRCCS Istituto Nazionale Dei Tumori (INT), Milan, Italy.
Nanne BosNetherlands Institute for Health Services Research (Nivel), Utrecht, The Netherlands.
Gennaro CilibertoIRCCS National Cancer Center "Regina Elena", on Behalf of DIGICORE, Rome, Italy.
Norbert CouespelEuropean Cancer Organisation (ECO), Brussels, Belgium.
Montse FerrerHealth Services Research Group, Hospital del Mar Research Institute, Barcelona, Spain.
Stein KaasaOslo Universitetssykehus HF (OUS), Oslo, Norway.
Claudio LombardoOrganisation of European Cancer Institutes (OECI), Brussels, Belgium.
Ricardo PietrobonSporeData OÜ, Tallinn, Estonia.
Gabriella PravettoniIstituto Europeo Di Oncologia IRCCS, Milan, Italy.
Aude Sirven, Unicancer, Paris, France.
Hugo VachonEuropean Organisation for Research & Treatment of Cancer, Quality of Life Department, Brussels, Belgium.
Mogens GroenvoldPalliative Care Research Unit, Department of Geriatrics and Palliative Medicine GP, Copenhagen University Hospital - Bispebjerg and Frederiksberg, University of Copenhagen, Copenhagen, Denmark.
Maria Alice FranzoiCancer Survivorship Group, Inserm U981, Villejuif, France.
Galina VelikovaLeeds Institute of Medical Research at St James's, University of Leeds, Leeds, UK.
Alexandra GilbertLeeds Institute of Medical Research at St James's, University of Leeds, Leeds, UK.
Lonneke V van de Poll-FranseDivision of Psychosocial Research and Epidemiology, The Netherlands Cancer Institute, Amsterdam, The Netherlands.

Funding

European Union 101096362
6 · The paper itself

Abstract

introductionCancer and cancer treatment have a major impact on health related quality of life (HRQoL). To improve the assessment of HRQoL in patients with cancer and evaluate the impact of policy interventions, the European Oncology Quality of Life (EUonQoL) project aims at developing a digital, patient centred system to assess HRQoL based on evaluations and preferences of cancer patients and survivors: the EUonQoL-kit.

methodPatients across the cancer care continuum, healthcare professionals and researchers from six European countries (Denmark, France, Germany, Italy, The Netherlands and United Kingdom) were asked to rate the importance of 44 pre-selected HRQoL subdomains over a maximum of three Delphi survey rounds. We evaluated the importance of HRQoL subdomains for three target populations: patients undergoing active treatment, cancer survivors and patients receiving palliative care. The results were discussed during a consensus meeting.

results96 patients and 59 healthcare professionals participated in the Delphi study. After three rounds, consensus was reached for 20 subdomains: ability to work, communication with healthcare professionals, diarrhoea, fatigue, fear of recurrence, global health status, impact of treatment side effects, impact on children/family, insomnia, instrumental activities of daily living, maintaining independence, mobility, nausea, overall quality of life, pain, partner relationship, social activity limitations, social isolation, symptom awareness and uncertain prognosis. The subdomains pain and fear of recurrence were rated as important for all three target populations.

conclusionSubdomains that were considered important for the assessment of HRQoL in patients with cancer can be summarised into: physical symptoms, mobility & activity, future outlook, social roles & activities, family & relationships, social isolation, self-efficacy, overall HRQoL, and healthcare experience. The importance of the subdomains differed for patients in different phases of the cancer care continuum. These findings were used for the creation of the first version of the EUonQoL-Kit, as a base for its further development.

Indexed as

Continuity of Patient CareNeoplasmsQuality of LifeAdultAgedCancer SurvivorsDelphi TechniqueEuropeFemaleHumansMaleMiddle AgedPalliative CarePatient Reported Outcome MeasuresSurveys and QuestionnairesCancerDelphi studyPatient centred researchPatient-reported outcome measuresQuality of life

Identifiers

PMID40536596
PMCPMC12179011

What OpenQuestion holds

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LicenceCC BY
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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.