Preliminary development and psychometric evaluation of an unmet needs measure for adolescents and young adults with cancer: the Cancer Needs Questionnaire - Young People (CNQ-YP)
<p>Abstract</p> <p>Background</p> <p>Adolescents and young adult (AYA) cancer survivors may have unique physical, psychological and social needs due to their cancer occurring at a critical phase of development. The aim of this study was to develop a psychometrically rig...
| Main Authors: | , , , , |
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| Format: | Article |
| Language: | English |
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BMC
2012-01-01
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| Series: | Health and Quality of Life Outcomes |
| Subjects: | |
| Online Access: | http://www.hqlo.com/content/10/1/13 |
| _version_ | 1818212497501454336 |
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| author | Clinton-McHarg Tara Carey Mariko Sanson-Fisher Rob D'Este Catherine Shakeshaft Anthony |
| author_facet | Clinton-McHarg Tara Carey Mariko Sanson-Fisher Rob D'Este Catherine Shakeshaft Anthony |
| author_sort | Clinton-McHarg Tara |
| collection | DOAJ |
| description | <p>Abstract</p> <p>Background</p> <p>Adolescents and young adult (AYA) cancer survivors may have unique physical, psychological and social needs due to their cancer occurring at a critical phase of development. The aim of this study was to develop a psychometrically rigorous measure of unmet need to capture the specific needs of this group.</p> <p>Methods</p> <p>Items were developed following a comprehensive literature review, focus groups with AYAs, and feedback from health care providers, researchers and other professionals. The measure was pilot tested with 32 AYA cancer survivors recruited through a state-based cancer registry to establish face and content validity. A main sample of 139 AYA cancer patients and survivors were recruited through seven treatment centres and invited to complete the questionnaire. To establish test-retest reliability, a sub-sample of 34 participants completed the measure a second time. Exploratory factor analysis was performed and the measure was assessed for internal consistency, discriminative validity, potential responsiveness and acceptability.</p> <p>Results</p> <p>The Cancer Needs Questionnaire - Young People (CNQ-YP) has established face and content validity, and acceptability. The final measure has 70 items and six factors: Treatment Environment and Care (33 items); Feelings and Relationships (14 items); Daily Life (12 items); Information and Activities (5 items); Education (3 items); and Work (3 items). All domains achieved Cronbach's alpha values greater than 0.80. Item-to-item test-retest reliability was also high, with all but four items reaching weighted kappa values above 0.60.</p> <p>Conclusions</p> <p>The CNQ-YP is the first multi-dimensional measure of unmet need which has been developed specifically for AYA cancer patients and survivors. The measure displays a strong factor structure, and excellent internal consistency and test-retest reliability. However, the small sample size has implications for the reliability of the statistical analyses undertaken, particularly the exploratory factor analysis. Future studies with a larger sample are recommended to confirm the factor structure of the measure. Longitudinal studies to establish responsiveness and predictive validity should also be undertaken.</p> |
| first_indexed | 2024-12-12T05:49:20Z |
| format | Article |
| id | doaj.art-3cff2217d08244c697106bf80551d32f |
| institution | Directory Open Access Journal |
| issn | 1477-7525 |
| language | English |
| last_indexed | 2024-12-12T05:49:20Z |
| publishDate | 2012-01-01 |
| publisher | BMC |
| record_format | Article |
| series | Health and Quality of Life Outcomes |
| spelling | doaj.art-3cff2217d08244c697106bf80551d32f2022-12-22T00:35:43ZengBMCHealth and Quality of Life Outcomes1477-75252012-01-011011310.1186/1477-7525-10-13Preliminary development and psychometric evaluation of an unmet needs measure for adolescents and young adults with cancer: the Cancer Needs Questionnaire - Young People (CNQ-YP)Clinton-McHarg TaraCarey MarikoSanson-Fisher RobD'Este CatherineShakeshaft Anthony<p>Abstract</p> <p>Background</p> <p>Adolescents and young adult (AYA) cancer survivors may have unique physical, psychological and social needs due to their cancer occurring at a critical phase of development. The aim of this study was to develop a psychometrically rigorous measure of unmet need to capture the specific needs of this group.</p> <p>Methods</p> <p>Items were developed following a comprehensive literature review, focus groups with AYAs, and feedback from health care providers, researchers and other professionals. The measure was pilot tested with 32 AYA cancer survivors recruited through a state-based cancer registry to establish face and content validity. A main sample of 139 AYA cancer patients and survivors were recruited through seven treatment centres and invited to complete the questionnaire. To establish test-retest reliability, a sub-sample of 34 participants completed the measure a second time. Exploratory factor analysis was performed and the measure was assessed for internal consistency, discriminative validity, potential responsiveness and acceptability.</p> <p>Results</p> <p>The Cancer Needs Questionnaire - Young People (CNQ-YP) has established face and content validity, and acceptability. The final measure has 70 items and six factors: Treatment Environment and Care (33 items); Feelings and Relationships (14 items); Daily Life (12 items); Information and Activities (5 items); Education (3 items); and Work (3 items). All domains achieved Cronbach's alpha values greater than 0.80. Item-to-item test-retest reliability was also high, with all but four items reaching weighted kappa values above 0.60.</p> <p>Conclusions</p> <p>The CNQ-YP is the first multi-dimensional measure of unmet need which has been developed specifically for AYA cancer patients and survivors. The measure displays a strong factor structure, and excellent internal consistency and test-retest reliability. However, the small sample size has implications for the reliability of the statistical analyses undertaken, particularly the exploratory factor analysis. Future studies with a larger sample are recommended to confirm the factor structure of the measure. Longitudinal studies to establish responsiveness and predictive validity should also be undertaken.</p>http://www.hqlo.com/content/10/1/13Adolescents and young adultscancerunmet needsmeasure developmentpsychometric evaluationreliabilityvalidity |
| spellingShingle | Clinton-McHarg Tara Carey Mariko Sanson-Fisher Rob D'Este Catherine Shakeshaft Anthony Preliminary development and psychometric evaluation of an unmet needs measure for adolescents and young adults with cancer: the Cancer Needs Questionnaire - Young People (CNQ-YP) Health and Quality of Life Outcomes Adolescents and young adults cancer unmet needs measure development psychometric evaluation reliability validity |
| title | Preliminary development and psychometric evaluation of an unmet needs measure for adolescents and young adults with cancer: the Cancer Needs Questionnaire - Young People (CNQ-YP) |
| title_full | Preliminary development and psychometric evaluation of an unmet needs measure for adolescents and young adults with cancer: the Cancer Needs Questionnaire - Young People (CNQ-YP) |
| title_fullStr | Preliminary development and psychometric evaluation of an unmet needs measure for adolescents and young adults with cancer: the Cancer Needs Questionnaire - Young People (CNQ-YP) |
| title_full_unstemmed | Preliminary development and psychometric evaluation of an unmet needs measure for adolescents and young adults with cancer: the Cancer Needs Questionnaire - Young People (CNQ-YP) |
| title_short | Preliminary development and psychometric evaluation of an unmet needs measure for adolescents and young adults with cancer: the Cancer Needs Questionnaire - Young People (CNQ-YP) |
| title_sort | preliminary development and psychometric evaluation of an unmet needs measure for adolescents and young adults with cancer the cancer needs questionnaire young people cnq yp |
| topic | Adolescents and young adults cancer unmet needs measure development psychometric evaluation reliability validity |
| url | http://www.hqlo.com/content/10/1/13 |
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