caa a22 4500 47584758X CHVBK 20180406123918.0 cr unu---uuuuu 170329e20000301xx s 000 0 eng 10.1023/A:1008967104082 doi (NATIONALLICENCE)springer-10.1023/A:1008967104082 Cancer patients as 'sexperts' in defining quality of life domains. A multicentre survey by the Italian Group for the Evaluation of Outcomes in Oncology (IGEO) [Elektronische Daten] [M. Costantini, E. Mencaglia, P.D. Giulio, E. Cortesi, F. Roila, E. Ballatori, M. Tamburini, P. Casali, L. Licitra, D.D. Candis, B. Massidda, M. Luzzani, E. Campora, S.D. Placido, S. Palmeri, P.M. Angela, G. Baracco, R. Gareri, A. Martignetti, S. Ragosa, L. Zoda, M.T. Ionta, S. Bulletti, L. Pastore] Although the subjective nature of quality of life is generally accepted, less attention has been paid to the procedure of selecting domains to be explored with questionnaires. To explore what contributes to cancer patients' quality of life, a survey was conducted with the aim of identifying contents of quality of life using cancer patients as 'sexperts'. A questionnaire with open-ended items aimed at exploring the meaning of quality of life and at determining the contents of health and not health related quality of life, was submitted to a sample of cancer patients stratified by residence, cancer site and stage of disease. The 248 questionnaires received were transcribed and broken down into phrases to allow coding. A content analysis was performed, using as a conceptual framework, the domains identified by the Italian Society of Psycho-Oncology. Overall, 43 domains and a list of symptoms were identified. The two most frequently reported symptoms were pain (21.4% patients) and fatigue (14.1% patients). Social relationships and psychological domains were heavily represented. Twenty sub-domains related to the domain 'spsychological well-being'. This study suggests that information on the content of quality of life questionnaires to be submitted to people affected by a specific disease, should be derived by studying people suffering the specific disease. These results reinforce the criticism that available quality of life instruments are more likely to reflect the perspective of health professionals than patients. Kluwer Academic Publishers, 2000 Cancer nationallicence Content analysis nationallicence Quality of life nationallicence Costantini M. Unit of Clinical Epidemiology and Trials, National Cancer Institute, Genoa aut Mencaglia E. Division of Psychology, Istituto Nazionale per lo Studio e la Cura dei Tumori, Milan aut Giulio P.D. Nursing Research Unit, Istituto Mario Negri, Milan aut Cortesi E. Medical Oncology, Università La Sapienza, Rome aut Roila F. Medical Oncology Department, Ospedale Policlinico, Perugia aut Ballatori E. Medical Statistics Unit, Department of Internal Medicine, Università de L'Aquila, Milan aut Tamburini M. Division of Psychology, Istituto Nazionale per lo Studio e la Cura dei Tumori, Milan aut Casali P. Division of Medical Oncology, Istituto Nazionale per lo Studio e la Cura dei Tumori, Milan aut Licitra L. Division of Medical Oncology, Istituto Nazionale per lo Studio e la Cura dei Tumori, Milan aut Candis D.D. Division of Medical Oncology, Istituto Nazionale per lo Studio e la Cura dei Tumori, Milan aut Massidda B. Medical Oncology, Università di Cagliari, Milan aut Luzzani M. Department of Pain Therapy and Palliative Care, National Cancer Institute, Genoa aut Campora E. Department of Medical Oncology I, National Cancer Institute, Genoa aut Placido S.D. Università Federico II, Naples aut Palmeri S. Medical Oncology, Università di Palermo, Naples aut Angela P.M. Medical Oncology Department, Ospedale Policlinico, Perugia aut Baracco G. Psychology Service, National Cancer Institute, Genoa aut Gareri R. Medical Oncology, Università La Sapienza, Rome aut Martignetti A. Università Federico II, Naples aut Ragosa S. Medical Oncology, Università di Cagliari, Milan aut Zoda L. Medical Oncology, Università di Palermo, Naples aut Ionta M.T. Medical Oncology, Università di Cagliari, Milan aut Bulletti S. Medical Oncology Department, Ospedale Policlinico, Perugia aut Pastore L. Medical Oncology, Università La Sapienza, Rome aut Quality of Life Research Kluwer Academic Publishers 9/2(2000-03-01), 151-159 0962-9343 9:2<151 2000 9 11136 https://doi.org/10.1023/A:1008967104082 text/html Onlinezugriff via DOI 1 research-article jats NATIONALLICENCE 856 40 https://doi.org/10.1023/A:1008967104082 text/html Onlinezugriff via DOI NATIONALLICENCE 700 1- Costantini M. Unit of Clinical Epidemiology and Trials, National Cancer Institute, Genoa aut NATIONALLICENCE 700 1- Mencaglia E. Division of Psychology, Istituto Nazionale per lo Studio e la Cura dei Tumori, Milan aut NATIONALLICENCE 700 1- Giulio P.D. Nursing Research Unit, Istituto Mario Negri, Milan aut NATIONALLICENCE 700 1- Cortesi E. Medical Oncology, Università La Sapienza, Rome aut NATIONALLICENCE 700 1- Roila F. Medical Oncology Department, Ospedale Policlinico, Perugia aut NATIONALLICENCE 700 1- Ballatori E. Medical Statistics Unit, Department of Internal Medicine, Università de L'Aquila, Milan aut NATIONALLICENCE 700 1- Tamburini M. Division of Psychology, Istituto Nazionale per lo Studio e la Cura dei Tumori, Milan aut NATIONALLICENCE 700 1- Casali P. Division of Medical Oncology, Istituto Nazionale per lo Studio e la Cura dei Tumori, Milan aut NATIONALLICENCE 700 1- Licitra L. Division of Medical Oncology, Istituto Nazionale per lo Studio e la Cura dei Tumori, Milan aut NATIONALLICENCE 700 1- Candis D.D. Division of Medical Oncology, Istituto Nazionale per lo Studio e la Cura dei Tumori, Milan aut NATIONALLICENCE 700 1- Massidda B. Medical Oncology, Università di Cagliari, Milan aut NATIONALLICENCE 700 1- Luzzani M. Department of Pain Therapy and Palliative Care, National Cancer Institute, Genoa aut NATIONALLICENCE 700 1- Campora E. Department of Medical Oncology I, National Cancer Institute, Genoa aut NATIONALLICENCE 700 1- Placido S.D. Università Federico II, Naples aut NATIONALLICENCE 700 1- Palmeri S. Medical Oncology, Università di Palermo, Naples aut NATIONALLICENCE 700 1- Angela P.M. Medical Oncology Department, Ospedale Policlinico, Perugia aut NATIONALLICENCE 700 1- Baracco G. Psychology Service, National Cancer Institute, Genoa aut NATIONALLICENCE 700 1- Gareri R. Medical Oncology, Università La Sapienza, Rome aut NATIONALLICENCE 700 1- Martignetti A. Università Federico II, Naples aut NATIONALLICENCE 700 1- Ragosa S. Medical Oncology, Università di Cagliari, Milan aut NATIONALLICENCE 700 1- Zoda L. Medical Oncology, Università di Palermo, Naples aut NATIONALLICENCE 700 1- Ionta M.T. Medical Oncology, Università di Cagliari, Milan aut NATIONALLICENCE 700 1- Bulletti S. Medical Oncology Department, Ospedale Policlinico, Perugia aut NATIONALLICENCE 700 1- Pastore L. Medical Oncology, Università La Sapienza, Rome aut NATIONALLICENCE 773 0- Quality of Life Research Kluwer Academic Publishers 9/2(2000-03-01), 151-159 0962-9343 9:2<151 2000 9 11136 Metadata rights reserved Springer special CC-BY-NC licence nationallicence BK010053 XK010053 XK010000 NATIONALLICENCE NATIONALLICENCE NL-springer