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@ARTICLE{Sweegers:302141,
      author       = {M. G. Sweegers and E. de Jongh and C. Bedding and E.
                      Nicklin and D. Doege$^*$ and S. Alfieri and L. Gangeri and
                      B. Scacciati and A. Caraceni and C. Brunelli and A. Bredart
                      and L. Rojas-Concha and H. Pappot and G. Apolone and N. Bos
                      and G. Ciliberto and N. Couespel and M. Ferrer and S. Kaasa
                      and C. Lombardo and R. Pietrobon and G. Pravettoni and A.
                      Sirven and H. Vachon and M. Groenvold and M. A. Franzoi and
                      G. Velikova and A. Gilbert and L. V. van de Poll-Franse},
      title        = {{D}evelopment of a unified system for assessing health
                      related quality of life across the cancer care continuum:
                      the {EU}on{Q}o{L} {D}elphi study to identify priorities for
                      quality of life domains.},
      journal      = {Journal of patient-reported outcomes},
      volume       = {9},
      number       = {1},
      issn         = {2509-8020},
      address      = {London},
      publisher    = {SpringerOpen},
      reportid     = {DKFZ-2025-01259},
      pages        = {70},
      year         = {2025},
      abstract     = {Cancer 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.Patients 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.96 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.Subdomains 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.},
      keywords     = {Humans / Quality of Life: psychology / Delphi Technique /
                      Neoplasms: therapy / Neoplasms: psychology / Male / Female /
                      Middle Aged / Europe / Adult / Continuity of Patient Care /
                      Aged / Cancer Survivors: psychology / Surveys and
                      Questionnaires / Patient Reported Outcome Measures /
                      Palliative Care / Cancer (Other) / Delphi study (Other) /
                      Patient centred research (Other) / Patient-reported outcome
                      measures (Other) / Quality of life (Other)},
      cin          = {C071},
      ddc          = {610},
      cid          = {I:(DE-He78)C071-20160331},
      pnm          = {313 - Krebsrisikofaktoren und Prävention (POF4-313)},
      pid          = {G:(DE-HGF)POF4-313},
      typ          = {PUB:(DE-HGF)16},
      pubmed       = {pmid:40536596},
      pmc          = {pmc:PMC12179011},
      doi          = {10.1186/s41687-025-00907-z},
      url          = {https://inrepo02.dkfz.de/record/302141},
}