Cancer Patients as 'Experts' in Defining Quality of Life Domains. A Multicentre Survey by the Italian Group for the Evaluation of Outcomes in Oncology (IGEO)
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 con...
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| Veröffentlicht in: | Quality of life research 2000-03, Vol.9 (2), p.151-159 |
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| creator | Costantini, M. E. Mencaglia P. D. Giulio E. Cortesi Roila, F. E. Ballatori Tamburini, M. 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 |
| description | 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 'experts'. 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 'psychological 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. |
| doi_str_mv | 10.1023/A:1008967104082 |
| format | Article |
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A Multicentre Survey by the Italian Group for the Evaluation of Outcomes in Oncology (IGEO)</title><source>Jstor Complete Legacy</source><source>MEDLINE</source><source>SpringerLink Journals</source><creator>Costantini, M. ; E. Mencaglia ; P. D. Giulio ; E. Cortesi ; Roila, F. ; E. Ballatori ; Tamburini, M. ; 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</creator><creatorcontrib>Costantini, M. ; E. Mencaglia ; P. D. Giulio ; E. Cortesi ; Roila, F. ; E. Ballatori ; Tamburini, M. ; 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</creatorcontrib><description>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 'experts'. 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 'psychological 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. 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Pastore</creatorcontrib><title>Cancer Patients as 'Experts' in Defining Quality of Life Domains. A Multicentre Survey by the Italian Group for the Evaluation of Outcomes in Oncology (IGEO)</title><title>Quality of life research</title><addtitle>Qual Life Res</addtitle><description>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 'experts'. 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. 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These results reinforce the criticism that available quality of life instruments are more likely to reflect the perspective of health professionals than patients.</description><subject>Breast cancer</subject><subject>Cancer</subject><subject>Content analysis</subject><subject>Diseases</subject><subject>Epidemiology</subject><subject>Female</subject><subject>Humans</subject><subject>Italy</subject><subject>Male</subject><subject>Middle Aged</subject><subject>Multivariate Analysis</subject><subject>Neoplasms - psychology</subject><subject>Oncology</subject><subject>Outcome Assessment (Health Care)</subject><subject>Psychology</subject><subject>Psychometrics</subject><subject>Quality of Life</subject><subject>Questionnaires</subject><subject>Social psychology</subject><subject>Surveys and Questionnaires</subject><subject>Wellbeing</subject><issn>0962-9343</issn><issn>1573-2649</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2000</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><sourceid>BENPR</sourceid><recordid>eNp90U2P0zAQBmALgdjuwpkLQhYHCocsduzENreqW0qlooKAc-S6k8VVYhd_rDY_hv9Kwi4cOHAayfO8MxoZoWeUXFJSsreLd5QQqWpBCSeyfIBmtBKsKGuuHqIZUXVZKMbZGTqP8UgmSsrH6IwSJRkXaoZ-LrUzEPAnnSy4FLGOeL66PUFIcY6tw1fQWmfdNf6cdWfTgH2Lt7YFfOV7bV28xAv8MXfJmjEeAH_J4QYGvB9w-g54k8aQdngdfD7h1offr6sb3eVxoXfTtF1OxvcQp207Z3znrwf8erNe7d48QY9a3UV4el8v0Lf3q6_LD8V2t94sF9vCMMZSwcCYsqJQHQTotpRC1gdeGQbAialU3UrGpN6DgJZIuQcmKOWcKCprSoQEdoHmd3NPwf_IEFPT22ig67QDn2MjBOWCKMVG-er_siwrVldyhC__gUefgxuvaKRkktVKTujFPcr7Hg7NKdheh6H58z8jeH4HjjH58LfPyZRX7BesMZoa</recordid><startdate>20000301</startdate><enddate>20000301</enddate><creator>Costantini, M.</creator><creator>E. 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| fulltext | fulltext |
| identifier | ISSN: 0962-9343 |
| ispartof | Quality of life research, 2000-03, Vol.9 (2), p.151-159 |
| issn | 0962-9343 1573-2649 |
| language | eng |
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| source | Jstor Complete Legacy; MEDLINE; SpringerLink Journals |
| subjects | Breast cancer Cancer Content analysis Diseases Epidemiology Female Humans Italy Male Middle Aged Multivariate Analysis Neoplasms - psychology Oncology Outcome Assessment (Health Care) Psychology Psychometrics Quality of Life Questionnaires Social psychology Surveys and Questionnaires Wellbeing |
| title | Cancer Patients as 'Experts' in Defining Quality of Life Domains. A Multicentre Survey by the Italian Group for the Evaluation of Outcomes in Oncology (IGEO) |
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