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      Experiencing brain cancer: what physicians should know about patients

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          Abstract

          During the last 20 years, numerous studies have highlighted the need to consider Quality of Life (QoL) issues in the treatment of brain cancer. However, gaps in scientific knowledge are still present as we have poor data surrounding the whole experience in patients and regarding their needs.

          The present study was aimed at evaluating QoL in brain cancer patients and correlated aspects. In particular, we aimed to assess QoL, mood state, and emotional issues in order to describe the patients’ experience to find out the critical aspects involved.

          Methods

          We obtained data from 85 patients during chemotherapy treatment at the National Neurological Institute ‘C. Besta’ of Milan, Italy. We used standardised questionnaires to assess different aspects of patients’ QoL. In particular, the functional assessment of cancer therapy-brain (FACT-Br) and the Hamilton scale were used. We also performed a semi-structured ad hoc interview in order to collect ­narrative data about patients’ experience.

          Results

          Our data depict a difficult adjustment process to the illness, even though positive elements emerged. Indeed, patients reported a satisfying self-perceived QoL, although specific concerns are still present. Further, even if many patients report depressive symptoms, only a minority have a severe condition.

          Conclusion

          Brain cancer may heavily affect patients’ QoL and well being. However, some element of the context may improve the ­adjustment to the disease. In particular, we found that most patients found psychosocial resources to cope with cancer and that spiritual well being also seems to play a key role. These issues deserve further studies in order to obtain significant clinical recommendations.

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          Most cited references25

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          Hormones and mood: from menarche to menopause and beyond.

          M. Steiner (2003)
          The lifetime prevalence of mood disorders in women is approximately twice that of men. The underlying causality of this gender difference is not yet understood. There is increasing scientific attention to the modulation of the neuroendocrine system by fluctuating gonadal hormones. This review attempts to summarize our current state of knowledge on the role and potential relevance of estrogen and other sex steroids to psychiatric disorders specific to women from menarche to menopause. The sudden appearance of higher levels of estrogen in puberty alters the sensitivity of the neurotransmitter systems. Moreover, the constant flux of estrogen and progesterone levels throughout the reproductive years portends constant modification of the neurotransmitter systems. Premenstrual syndromes may be the result of an altered activity or sensitivity of certain neurotransmitter systems. Pregnancy and delivery produce dramatic changes in estrogen and progesterone levels as well as significant suppression along the HPA axis, possibly increasing vulnerability to depression. At menopause, estrogen levels decline while pituitary LH and FSH levels increase. The loss of modulating effects of estrogen and progesterone may underlie the development of perimenopausal mood disorders in vulnerable women. The pattern of neuroendocrine events related to female reproduction is vulnerable to change and is sensitive to psychosocial, environmental, and physiological factors. Further research is needed to be able to identify specific genetic markers which might help us better understand how the balance between estrogen, progesterone, testosterone, and other steroid hormones affect neurotransmitter function.
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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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              Unmet spiritual care needs impact emotional and spiritual well-being in advanced cancer patients.

              Spiritual care is an important part of healthcare, especially when facing the crisis of advanced cancer. Do oncology inpatients receive spiritual care consistent with their needs? When inconsistent, are there deleterious effects on patient outcomes? Patients with advanced cancer (N = 150) were surveyed during their inpatient stay at a southeastern medical center using validated instruments documenting spirituality, quality of life, mood, and satisfaction with care. Relationships between the receipt of less spiritual care than desired and patient outcomes were examined. Almost all patients had spiritual needs (91%) and the majority desired and received spiritual care from their healthcare providers (67%; 68%), religious community (78%; 73%), and hospital chaplain (45%; 36%). However, a significant subset received less spiritual care than desired from their healthcare providers (17%), religious community (11%), and chaplain (40%); in absolute terms, the number who received less care than desired from one or more sources was substantial (42 of 150). Attention to spiritual care would improve satisfaction with care while hospitalized for 35% of patients. Patients who received less spiritual care than desired reported more depressive symptoms [adjusted β (SE) = 1.2 (0.47), p = 0.013] and less meaning and peace [adjusted β (SE) = -2.37 (1.15), p = 0.042]. A substantial minority of patients did not receive the spiritual care they desired while hospitalized. When spiritual needs are not met, patients are at risk of depression and reduced sense of spiritual meaning and peace. Spiritual care should be matched to cancer patients' needs.
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                Author and article information

                Journal
                Ecancermedicalscience
                Ecancermedicalscience
                ecancermedicalscience
                ecancermedicalscience
                Cancer Intelligence
                1754-6605
                2015
                12 November 2015
                : 9
                : 591
                Affiliations
                [1 ]Department of Philosophy, Università degli studi di Milano, Via Festa del Perdono 7, Milan 20122, Italy
                [2 ]National Neurological Institute, ‘Carlo Besta’, Milan 20133, Italy
                [3 ]Department of Oncology and Hemato-oncology, Università degli Studi di Milano, Via Festa del Perdono 7, Milan 20122, Italy
                [4 ]Applied Research Unit for Cognitive and Psychological Science, European Institute of Oncology, Milan 20141, Italy
                Author notes
                Correspondence to: Claudio Lucchiari. Claudio.lucchiari@ 123456unimi.it
                Article
                can-9-591
                10.3332/ecancer.2015.591
                4659704
                e6262827-409a-4f39-8de4-906045b5447f
                © 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/3.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

                History
                : 26 July 2015
                Categories
                Research

                Oncology & Radiotherapy
                high grade gliomas,quality of life,depression,emotional well-being,spiritual well-being

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