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Quality of life of ...
Quality of life of patients with osteosarcoma in the european american osteosarcoma study-1 (EURAMOS-1) : Development and implementation of a questionnaire substudy
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- Calaminus, Gabriele (författare)
- University Hospital Bonn
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- Jenney, Meriel (författare)
- University Hospital of Wales
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- Hjorth, Lars (författare)
- Lund University,Lunds universitet,Sena effekter efter barncancerbehandling,Forskargrupper vid Lunds universitet,Late effects after childhood cancer treatment,Lund University Research Groups,Skåne University Hospital
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- Baust, Katja (författare)
- University Hospital Bonn
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- Bernstein, Mark (författare)
- Dalhousie University
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- Bielack, Stefan (författare)
- Klinikum Stuttgart Olgahospital
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- de Vos, Patricia (författare)
- Ghent University Hospital
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- Hogendoorn, Pancras C.W. (författare)
- Leiden University Medical Centre
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- Jovic, Gordana (författare)
- University College London
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- Krailo, Mark (författare)
- University of Southern California,Children's Oncology Group, Arcadia
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- Kreitz, Kiana (författare)
- University of Münster
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- Marina, Neyssa (författare)
- Five Prime Therapeutics Inc
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- Popoola, Babasola O. (författare)
- University College London
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- Sauerland, Cristina (författare)
- University of Münster
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- Smeland, Sigbjørn (författare)
- University of Oslo,Oslo university hospital
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- Teske, Carmen (författare)
- University Hospital Bonn
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- Schweinitz, Clara V. (författare)
- University Hospital Bonn
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- Whelan, Jeremy (författare)
- University College London Hospital
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- Wiener, Andreas (författare)
- West German Proton Therapy Centre Essen (WPE)
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- Sydes, Matthew R. (författare)
- University College London
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- Nagarajan, Rajaram (författare)
- University of Cincinnati,Cincinnati Children's Hospital Medical Center
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(creator_code:org_t)
- 2019-09-26
- 2019
- Engelska.
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Ingår i: JMIR Research Protocols. - : JMIR Publications Inc.. - 1929-0748. ; 8:9
- Relaterad länk:
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http://dx.doi.org/10... (free)
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https://jmir.org/api...
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https://lup.lub.lu.s...
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https://doi.org/10.2...
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Abstract
Ämnesord
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- Background: The quality of life (QoL) of patients with osteosarcoma (OS) may be adversely affected by the disease or its treatment. Therefore, it is important to understand the QoL of patients undergoing treatment for OS to improve the QoL. We report on the first prospective international QoL study that was embedded within a large randomized clinical trial from 4 national study groups. Objective: This paper aimed to describe the QoL study development, methodology, accrual details, and characteristics of the QoL cohort. Methods: A total of 2260 patients registered in the EURopean AMerican Osteosarcoma Study-1 (EURAMOS-1), of whom 97.92% (2213/2260) were eligible for the optional QoL assessment and could participate in terms of questionnaire availability. Overall, 61.86% (1369/2213) of patients and/or proxies completed the QoL evaluation at the first assessment time point (E1) after the start of preoperative treatment. The QoL measures used (self- and/or proxy reports) depending on the patient’s age and national study group. Participants and nonparticipants in the ancillary QoL study were compared regarding relevant demographic and disease-related characteristics at registration in the trial. Results: The participation rate at time point E1 did not differ with regard to age, gender, the occurrence of pathological fracture, or the presence of any metastases at diagnosis. No differences were found regarding the primary tumor site. Only the national study group affiliation had an influence on participation. Participation decreased linearly with trial progress up to 20% at the final time point of QoL assessment. Conclusions: This study demonstrates the feasibility of international cooperation for the purpose of assessing and understanding the QoL of pediatric and adolescent/young adult patients with cancer. Future outcomes of this QoL substudy will help to adapt interventions to improve QoL.
Ämnesord
- MEDICIN OCH HÄLSOVETENSKAP -- Hälsovetenskap -- Folkhälsovetenskap, global hälsa, socialmedicin och epidemiologi (hsv//swe)
- MEDICAL AND HEALTH SCIENCES -- Health Sciences -- Public Health, Global Health, Social Medicine and Epidemiology (hsv//eng)
- MEDICIN OCH HÄLSOVETENSKAP -- Klinisk medicin -- Cancer och onkologi (hsv//swe)
- MEDICAL AND HEALTH SCIENCES -- Clinical Medicine -- Cancer and Oncology (hsv//eng)
Nyckelord
- Adolescent
- Cancer
- Child
- Observational study
- Osteosarcoma
- Quality of life
- Sarcoma
- Survivors of childhood cancer
- Young adult
Publikations- och innehållstyp
- art (ämneskategori)
- ref (ämneskategori)
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Calaminus, Gabri ...
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Jenney, Meriel
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Hjorth, Lars
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Baust, Katja
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Bernstein, Mark
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Bielack, Stefan
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de Vos, Patricia
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Hogendoorn, Panc ...
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Jovic, Gordana
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Krailo, Mark
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Kreitz, Kiana
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Marina, Neyssa
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Popoola, Babasol ...
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Sauerland, Crist ...
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Smeland, Sigbjør ...
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Teske, Carmen
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Schweinitz, Clar ...
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Whelan, Jeremy
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Wiener, Andreas
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Sydes, Matthew R ...
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Nagarajan, Rajar ...
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