8 results on '"Carey, Mariko L."'
Search Results
2. Development of cancer needs questionnaire for parents and carers of adolescents and young adults with cancer
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Carey, Mariko L., Clinton-McHarg, Tara, Sanson-Fisher, Robert William, and Shakeshaft, Anthony
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- 2012
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3. Quality of patient-centred care: Medical oncology patients' perceptions and characteristics associated with quality of care.
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Tzelepis, Flora, Hanna, Joseph H., Paul, Christine L., Boyes, Allison W., Carey, Mariko L., and Regan, Timothy
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ONCOLOGY ,MEDICAL quality control ,CANCER patients ,MEDICAL communication ,INTEGRATIVE oncology - Abstract
The article discusses quality of patientâ€centered care focusing on medical oncology patients' perceptions and characteristics associated with quality of care. Topics include service provided at medical oncology treatment centers, measurement of quality of care using confirmatory factor analysis, and importance given to patient preferences and values in cancer information and treatment decision making.
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- 2017
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4. Development and Psychometric Evaluation of the Quality of Patient-Centered Cancer Care Measure With Hematological Cancer Survivors.
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Tzelepis, Flora, Sanson‐Fisher, Robert W., Hall, Alix E., Carey, Mariko L., Paul, Christine L., and Clinton‐McHarg, Tara
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HEMATOLOGIC malignancies ,PATIENT-centered care ,PSYCHOMETRICS ,HEALTH outcome assessment ,EMOTIONS ,SURVIVAL analysis (Biometry) ,PATIENT education ,CANCER treatment - Abstract
BACKGROUND: The Institute of Medicine (IOM) recommended 6 objectives for achieving patient-centered care. However, most patient-reported outcome measures developed with cancer populations fail to address all 6 patient-centeredness dimensions. The Quality of Patient-Centered Cancer Care (QPCCC) measure was developed on the basis of IOM recommendations, and the measure's validity, reliability, and floor and ceiling effects were examined. METHODS: The development of the QPCCC measure included interviews with hematological cancer survivors and feedback from hematologists and cancer patients. To evaluate the measure's psychometric properties, hematological cancer survivors were identified via 2 cancer registries and were mailed the QPCCC measure. To examine test-retest reliability, a second QPCCC measure was mailed to survivors 7 to 14 days after they had returned the first measure. RESULTS: Overall, 545 hematological cancer survivors completed the 48-item QPCCC measure. Exploratory factor analysis revealed a 10-factor structure with factor loadings > 0.40. The subscales were labeled Treatment Delivery, Treatment Decision Making, Coordinated and Integrated Care, Emotional Support, Timely Care, Follow-Up Care, Respectful Communication, Patient Preferences and Values, Cancer Information, and Equitable Care. The QPCCC measure demonstrated acceptable internal consistency for all subscales (Cronbach's α = .73-.94). When test-retest reliability was assessed, 4 items demonstrated substantial agreement ( > 0.60), whereas 40 items showed moderate agreement (κ = 0.41-0.60). Ceiling effects were present for 8 subscales. CONCLUSIONS: The QPCCC measure has acceptable face and content validity, construct validity, and internal consistency. However, the measure's discriminant validity and test-retest reliability could be improved. The QPCCC measure could be used to improve patient-centered cancer care. [ABSTRACT FROM AUTHOR]
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- 2015
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5. The quality of patient-centred care: haematological cancer survivors' perceptions.
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Tzelepis, Flora, Sanson‐Fisher, Robert W., Hall, Alix E., Carey, Mariko L., Paul, Christine L., and Clinton‐McHarg, Tara
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PATIENT-centered care ,CANCER patient attitudes ,MEDICAL quality control ,CANCER treatment ,SOCIAL support ,MENTAL depression - Abstract
Objective: Patient-reported outcome measures (PROMs) that assess the quality of patient-centred cancer care have failed to measure all six patient-centredness dimensions endorsed by the Institute of Medicine (IOM). This study is the first to use the Quality of Patient-Centered Cancer Care (QPCCC) measure that covers all six IOM patient-centredness dimensions to examine haematological cancer survivors' perceptions of care and characteristics associated with perceived quality of care. Methods: Haematological cancer survivors diagnosed in the last 6 years and aged 18-80 years were recruited from two Australian state population-based cancer registries. Survivors were mailed the 48-item QPCCC measure. Results: Overall, 545 haematological cancer survivors completed the measure. Areas of care most commonly identified as delivered were hospital staff showing respect to survivors (93%) and making sure the correct treatment was received (93%). Aspects of care most frequently nominated as not delivered were hospital staff helping family and friends (34%) or the survivor (32%) to find other people with similar experiences to talk to. Characteristics associated with survivors perceiving higher quality care was delivered included being employed, having private health insurance, being younger, a Non-Hodgkin lymphoma diagnosis and more recent diagnosis. Being depressed or stressed was associated with perceived lower quality of care. Conclusions: Provision of peer support programs that allow haematological cancer survivors and families and friends to talk to others in similar situations could be improved. Using PROMs to identify areas where cancer survivors perceive improvements are needed is essential to quality improvement efforts. [ABSTRACT FROM AUTHOR]
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- 2015
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6. Are we missing the Institute of Medicine's mark? A systematic review of patient-reported outcome measures assessing quality of patient-centred cancer care.
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Tzelepis, Flora, Rose, Shiho K., Sanson-Fisher, Robert W., Clinton-McHarg, Tara, Carey, Mariko L., and Paul, Christine L.
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SYSTEMATIC reviews ,HEALTH outcome assessment ,MEDICAL care ,CANCER patients ,EMOTIONS ,MEDICAL publishing ,CROSS-cultural studies ,MEDICAL needs assessment - Abstract
Background The Institute of Medicine (IOM) has endorsed six dimensions of patient-centredness as crucial to providing quality healthcare. These dimensions outline that care must be: 1) respectful to patients' values, preferences, and expressed needs; 2) coordinated and integrated; 3) provide information, communication, and education; 4) ensure physical comfort; 5) provide emotional support--relieving fear and anxiety; and 6) involve family and friends. However, whether patient-reported outcome measures (PROMs) comprehensively cover these dimensions remains unexplored. This systematic review examined whether PROMs designed to assess the quality of patient-centred cancer care addressed all six IOM dimensions of patient-centred care and the psychometric properties of these measures. Methods Medline, PsycINFO, Current Contents, Embase, CINAHL and Scopus were searched to retrieve published studies describing the development and psychometric properties of PROMs assessing the quality of patient-centred cancer care. Two authors determined if eligible PROMs included the six IOM dimensions of patient-centred care and evaluated the adequacy of psychometric properties based on recommended criteria for internal consistency, test-retest reliability, face/content validity, construct validity and cross-cultural adaptation. Results Across all 21 PROMs, the most commonly included IOM dimension of patient-centred care was "information, communication and education" (19 measures). In contrast, only five measures assessed the "involvement of family and friends." Two measures included one IOM-endorsed patient-centred care dimension, two measures had two dimensions, seven measures had three dimensions, five measures had four dimensions, and four measures had five dimensions. One measure, the Indicators (Non-small Cell Lung Cancer), covered all six IOM dimensions of patient-centred care, but had adequate face/content validity only. Eighteen measures met the recommended adequacy criteria for construct validity, 15 for face/content validity, seven for internal consistency, three for cross-cultural adaptation and no measure for test-retest reliability. Conclusions There are no psychometrically rigorous PROMs developed with cancer patients that capture all six IOM dimensions of patient-centred care. Using more than one measure or expanding existing measures to cover all six patient-centred care dimensions could improve assessment and delivery of patient-centred care. Construction of new comprehensive measures with acceptable psychometric properties that can be used with the general cancer population may also be warranted. [ABSTRACT FROM AUTHOR]
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- 2014
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7. Do we get it right? Radiation oncology outpatients' perceptions of the patient centredness of life expectancy disclosure.
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Mackenzie, Lisa J., Carey, Mariko L., Paul, Chris L., Sanson‐Fisher, Rob W., and D'Este, Catherine A.
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CANCER patients , *LIFE expectancy , *RADIOTHERAPY , *MEDICAL personnel - Abstract
Objective A patient-centred approach to discussing life expectancy with cancer patients is recommended in Western countries. However, this approach to eliciting and meeting patient preferences can be challenging for clinicians. The aims of this study were the following: (i) to examine cancer patients' preferences for life expectancy disclosure; and (ii) to explore agreement between cancer patients' preferences for, and perceived experiences of, life expectancy disclosure. Methods Cancer patients undergoing radiotherapy treatment in metropolitan Australia completed a cross-sectional touchscreen computer survey including optional questions about their life expectancy disclosure preferences and experiences. Results Of the 208 respondents, 178 (86%) indicated that they would prefer their clinician to ask them before discussing life expectancy, and 30 (14%) indicated that they would prefer others (i.e. clinicians, family) to decide whether they were given life expectancy information. Of the 175 respondents who were classified as having a self- determined or other-determined disclosure experience, 105 (60%) reported an experience of life expectancy disclosure that was in accordance with their preferences. Cohen's κ was −0.04 (95% CI, −0.17, 0.08), indicating very poor agreement between patients' preferences for and perceived experiences of life expectancy disclosure ( p = 0.74). Conclusions In light of patient-centred prognosis disclosure guidelines, our findings of a majority preference for, and experience of, a self-determined approach to life expectancy disclosure amongst radiation oncology patients are encouraging. However, poor agreement between preferences and experiences highlights that additional effort from clinicians is required in order to achieve a truly patient-centred approach to life expectancy disclosure. Copyright © 2013 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]
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- 2013
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8. Access to Care and Impacts of Cancer on Daily Life: Do They Differ for Metropolitan Versus Regional Hematological Cancer Survivors?
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Paul, Christine L., Hall, Alix E., Carey, Mariko L., Cameron, Emilie C., and Clinton‐McHarg, Tara
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ANALYSIS of variance ,CANCER patients ,CHI-squared test ,COMPARATIVE studies ,HEALTH services accessibility ,METROPOLITAN areas ,POPULATION geography ,QUALITY of life ,RURAL conditions ,SELF-evaluation ,SURVEYS ,T-test (Statistics) ,MULTIPLE regression analysis ,WELL-being ,DATA analysis software ,DESCRIPTIVE statistics ,HEMATOLOGIC malignancies - Abstract
Purpose Little is known about access to care for hematological cancer patients. This study explored patient experiences of barriers to accessing care and associated financial and social impacts of the disease. Metropolitan versus nonmetropolitan experiences were compared. Methods A state-based Australian cancer registry identified adult survivors of hematological cancers (including lymphoma, leukemia and myeloma) diagnosed in the previous 3 years. Survivors were mailed a self-report pen and paper survey. Findings Of the 732 eligible survivors, 268 (37%) completed a survey. Forty percent of participants reported at least one locational barrier which limited access to care. Only 2% reported cancer-related expenses had restricted their treatment choices. Almost two-thirds (64%) reported at least one financial or social impact on their daily lives related to cancer. The most frequently reported impacts were the need to take time off work (44%) and difficulty paying bills (21%). Survivors living in a nonmetropolitan location had 17 times the odds of reporting locational or financial barriers compared with those in metropolitan areas. Preferred potential solutions to alleviate the financial and social impacts of the disease were: free parking for tests or treatment (37%), free medications or treatments (29%), and being able to get treatment in their local region (20%). Conclusions Providing more equitable access to care for hematological cancer patients in Australia requires addressing distances traveled to attend treatment and their associated financial and social impacts on nonmetropolitan patients. Greater flexibility in service delivery is also needed for patients still in the workforce. [ABSTRACT FROM AUTHOR]
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- 2013
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