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      The impact of decision models on self-perceived quality of life: a study on brain cancer patients

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      1 , 2 , 1
      ecancermedicalscience
      Cancer Intelligence

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          Abstract

          Quality of life (QoL) is an increasingly important outcome measure in medicine. Health, in fact, is not only based on functional status but also on psychological and social well being. Since QoL is related to the patient’s perception of their position in life in relation to their goals, expectations, standards and concerns, the way in which the medical context is experienced may be critical. We then hypothesised that self-perceived QoL may be linked to unmet needs in information management and decision involvement. To analyse this hypothesis, we conducted a quantitative study on 84 consecutive patients with a diagnosis of primary high-grade glioma. The functional assessment of cancer therapy-Brain (FACT-Br) scales, the hospital anxiety and depression (HAD) scale and the need evaluation questionnaire (NEQ) questionnaire were used, in order to measure quality-of-life dimension, mood and unmet needs. Patients were classified as having no need (cluster 1), a moderate need (cluster 2) or a high need (cluster 3) to be more involved in the clinical process.

          Our data confirmed previous studies in other clinical areas, showing that shared decision might contribute to a better adaptation process to the illness [ 1]. In fact, patients in cluster 1 showed a significant better self-perceived QoL, despite the lack of clinical differences between clusters. The study showed that patients satisfied with respect to decisional involvement seem to be able to better cope with their disease. Finally, the study suggests the need for a more attuned decision-making process in approaching clinical decisions. Physicians need to better understand patient preferences related to information and decision sharing.

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          Most cited references25

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          Detecting psychological distress in cancer patients: validity of the Italian version of the Hospital Anxiety and Depression Scale.

          The psychometric properties of the Italian version of the Hospital Anxiety and Depression Scale and its utility as a screening instrument for anxiety and depression in a non-psychiatric setting were evaluated. The questionnaire was administered twice to 197 breast cancer patients randomised in a phase III adjuvant clinical trial: before the start of chemotherapy and at the first follow-up visit. The presence of psychiatric disorders was evaluated at the follow-up visit using the Structured Clinical Interview for DSM-III-R in 132 patients. Factor analyses identified two strictly correlated factors. Crohnbach's alpha for the anxiety and depression scales ranged between 0.80 and 0.85. At follow-up, 50 patients (38%) were assigned a current DSM-III-R diagnosis, in most cases adjustment disorders (24%) or major depressive disorder (10%). Receiver operating characteristics (ROC) analysis was used to test the discriminant validity for both anxiety and depressive disorders. The comparison of the areas under the curve (AUC) between the two scales did not show any difference in identifying either anxiety (P = 0.855) or depressive disorders (P = 0.357). The 14-item total scale showed a high internal consistency (alpha = 0.89 and 0.88) and a high discriminating power for all the psychiatric disorders (AUC = 0.89; 95% CI = 0.83-0.94). The cut-off point that maximised sensitivity (84%) and specificity (79%) was 10. These results suggest that the total score is a valid measure of emotional distress, so that the Italian version of HADS can be used as a screening questionnaire for psychiatric disorders. The use of the two subscales as a 'case identifier' or as an outcome measure should be considered with caution.
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            The Functional Assessment of Cancer Therapy-Anemia (FACT-An) Scale: a new tool for the assessment of outcomes in cancer anemia and fatigue.

            D Cella (1997)
            Anemia, frequently associated with cancer and cancer treatment, can use a variety of symptoms that diminish overall quality of life (QOL). Fatigue is the most commonly reported symptom among cancer patients and can significantly affect their daily lives. Using the Functional Assessment of Cancer Therapy-General (FACT-G) instrument, which measures general QOL, as a core questionnaire, 20 new questions related to the impact of fatigue and other anemia-related symptoms on patients with cancer were developed. Two new instruments were produced: the FACT-Fatigue (FACT-F), consisting of the FACT-G plus 13 fatigue items (the Fatigue Subscale), and the FACT-Anemia (FACT-An), consisting of the FACT-F plus seven items addressing other concerns related to anemia, but unrelated to fatigue. FACT-F and FACT-An demonstrated good stability (r = .87 for both) and strong internal consistency (alpha = .95 and .96, respectively). Test-retest reliability coefficients for the Fatigue Subscale and nonfatigue items also showed good stability (r = .84 to .90), and the Fatigue Subscale showed strong internal consistency (alpha = .93 to .95). Convergent and discriminant validity testing revealed a significantly positive relationship with other known measures of fatigue, a significant negative relationship with vigor, and an anticipated lack of relationship with social desirability. The FACT-An, FACT-F, and Fatigue Subscale were found to successfully discriminate patients based on hemoglobin (Hb) level and Eastern Cooperative Oncology Group (ECOG) performance status. When patients were divided into two groups by Hb levels, patients with Hb levels greater than 12 g/dL reported significantly less fatigue, fewer nonfatigue anemia symptoms, better physical well-being, better functional well-being, and higher general QOL. The FACT-An, the FACT-F, and the Fatigue Subscale are useful measures of QOL in cancer patients and add focus to the widespread clinical problems of anemia and fatigue.
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              Information giving and decision-making in patients with advanced cancer: a systematic review.

              Patients with advanced, non-curable cancer face difficult decisions on further treatment, where a small increase in survival time must be balanced against the toxicity of the treatment. If patients want to be involved in these decisions, in keeping with current notions of autonomy and empowerment, they also require to be adequately informed both on the treatments proposed and on their own disease status and prognosis. A systematic review was performed on decision-making and information provision in patients with advanced cancer. Studies of interventions to improve information giving and encourage participation in decision-making were reviewed, including both randomised controlled trials and uncontrolled studies. Almost all patients expressed a desire for full information, but only about two-thirds wished to participate actively in decision-making. Higher educational level, younger age and female sex were predictive of a desire to participate in decision-making. Active decision-making was more common in patients with certain cancers (e.g. breast) than others (e.g. prostate). A number of simple interventions including question prompt sheets, audio-taping of consultations and patient decision aids have been shown to facilitate such involvement.
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                Author and article information

                Journal
                Ecancermedicalscience
                Ecancermedicalscience
                ecancermedicalscience
                Cancer Intelligence
                1754-6605
                2010
                20 August 2010
                : 4
                : 187
                Affiliations
                [1 ]Dipartimento di Studi Sociali e Politici, Università degli studi di Milano, Via Conservatorio 7, 20122 Milano, Italy
                [2 ]Italian National Neurological Institute C Besta, Via Celoria 11, 20133 Milan, Italy
                Author notes
                Correspondence to C Lucchiari. Email: claudio.lucchiari@ 123456unimi.it
                Article
                can-4-187
                10.3332/ecancer.2010.187
                3234023
                22276038
                bde7e3b9-ecc6-49d7-902b-a7a4c6132b36
                © the authors; licensee ecancermedicalscience.

                This is an Open Access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

                History
                : 17 May 2010
                Categories
                Research Article

                Oncology & Radiotherapy
                Oncology & Radiotherapy

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