Abstract:The diagnosis of a high-grade glioma usual is followed by functional impairment(s), cognitive decline and an impaired psycho-social well-being. This might well have a significant and negative impact on the health related quality of life. The purpose of this study was to explore physical activity levels, prevalence and severity of anxiety and depressive symptoms and health-related quality of life among patients with a highgrade glioma. This paper is based on a longitudinal mixed methods study. Patients (n = 30)… Show more
“…We also found that 22% of patients had a pathological score regarding depression in concurrence with other studies (e.g. [ 6 ]). Depression scores positively correlated with the functional status measured by the KPS.…”
Section: Discussionsupporting
confidence: 92%
“…A number of well-validated and reliable QoL instruments have been standardised, with both general measures and specific modules for various tumour sites, treatment modalities, and additional dimensions like spirituality [ 4 ] (Gill & Feinstein, 1994). However, a combination of a quantitative and qualitative approach may provide a more comprehensive picture of a patient’s QoL [ 5 , 6 ] (Lucchiari, Botturi, Masiero, Pravettoni, 2015; Piil et al 2015).…”
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.MethodsWe 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.ResultsOur 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.ConclusionBrain 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.
“…We also found that 22% of patients had a pathological score regarding depression in concurrence with other studies (e.g. [ 6 ]). Depression scores positively correlated with the functional status measured by the KPS.…”
Section: Discussionsupporting
confidence: 92%
“…A number of well-validated and reliable QoL instruments have been standardised, with both general measures and specific modules for various tumour sites, treatment modalities, and additional dimensions like spirituality [ 4 ] (Gill & Feinstein, 1994). However, a combination of a quantitative and qualitative approach may provide a more comprehensive picture of a patient’s QoL [ 5 , 6 ] (Lucchiari, Botturi, Masiero, Pravettoni, 2015; Piil et al 2015).…”
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.MethodsWe 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.ResultsOur 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.ConclusionBrain 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.
“…However, the sequence and the nature of the information provided varied, and this difference may partially explain the discrepancies between patients and caregivers as it relates to daily life consequences. Given that previous studies did not retrieve these discrepancies [13,28], longitudinal approaches will determine whether the observed discrepancy diminishes during later stages of the disease [8]. Scores ranging 0-100, the higher the score the higher coping strategy is used *p < 0.05 before correction for multiple testing; **p < 0.01 before correction for multiple testing; ( * ) p < 0.05 after correction for multiple testing correlated with the use of social support by the patient, indicating that the caregiver feels badly when the patient finds external resources but feels valued when the patient does not utilize external support.…”
Section: Discussionmentioning
confidence: 92%
“…The announcement of such a diagnosis and poor prognosis, the effects of the tumor on cognition and functionality, and the toxicity of treatments have rapid and important consequences on the everyday life of patients and their relatives [2,3]. These social, emotional, psychological and physical consequences have already been described [4][5][6], indicating an important quality of life (QoL) alteration at a level that is not normally observed in other cancers [7][8][9][10][11][12][13]. Due to these major lifestyle disruptions, there is an interest in studying how patients and caregivers handle the problems of daily life and how the Abstract Patients with high-grade gliomas (HGG) and their caregivers have to confront a very aggressive disease that produces major lifestyle disruptions.…”
Patients with high-grade gliomas (HGG) and their caregivers have to confront a very aggressive disease that produces major lifestyle disruptions. There is an interest in studying the ability of patients and their caregivers to cope with the difficulties that affect quality of life (QoL). We examine, in a sample of patient-caregiver dyads in the specific context of newly diagnosed cases of HGG, whether the QoL of patients and caregivers is influenced by the coping processes they and their relatives use from a specific actor-partner interdependence model (APIM). This cross-sectional study involved 42 dyads with patients having recent diagnoses of HGG and assessed in the time-frame between diagnosis and treatment initiation. The self-reported data included QoL (Patient-Generated Index, EORTC QLQ-C30, and CareGiver Oncology QoL), emotional status, and coping strategies (BriefCope). The APIM was used to test the dyadic effects of coping strategies on QoL. Coping strategies, such as social support, avoidance, and problem solving, exhibited evidence of either an actor effect (degree to which the individual's coping strategies are associated with their own QoL) or partner effect (degree to which the individual's coping strategies are associated with the QoL of the other member of the dyad) for patients or caregivers. For positive-thinking coping strategies, actor and partner effect were not observed. This study emphasizes that the QoL for patients and their caregivers was directly related to the coping strategies they used. This finding suggests that targeted interventions should be offered to help patients and their relatives to implement more effective coping strategies.
“…In our previous longitudinal qualitative study we interviewed patients with HGG and their caregivers, and identified a need for information and guidance regarding symptoms and supportive care interventions . In the same population we quantitatively measured HRQOL over time and found high levels of anxiety among the newly diagnosed patients (Piil, Jakobsen, Christensen, Juhler, & Jarden, 2015).…”
Previous reports on the patient perspective of daily life during a 1-year high-grade glioma (HGG) trajectory from the time of diagnosis are sparse. The aim of this longitudinal mixed methods study is to identify the specific needs and preferences for rehabilitation and supportive care and how it links with physical activity, psychological measures and health quality longitudinally over the first year after diagnosis among patients with HGG and their caregivers by integrating qualitative and quantitative findings. Using a longitudinal mixed methods design, patients with malignant glioma (n = 30) and their caregivers (n = 33) were interviewed and completed questionnaires (patients only) about physical activity level, anxiety/depression and quality of life five times during the 1-year period. Their needs and preferences included interventions designed to re-define hope after diagnosis, health promoting physical activities initiated early, psychological symptom management strategies, and life planning. Caregivers are committed to their caregiving role, but their engagement is nonetheless challenged over time by enormous caregiver burdens. The identified specific needs and preferences favour supportive care, education, information and rehabilitation. Guidelines attentive to these needs and implemented in clinical practice have the potential to improve patients' health-related quality of life and support caregivers by involving them more actively in care and management.
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