Symptom experience in patients with primary brain tumours: A longitudinal exploratory study

Molassiotis, Alex; Wilson, Barbara A.; Brunton, Lisa; Chaudhary, Haseeb; Gattamaneni, Rao; McBain, Catherine

doi:10.1016/j.ejon.2010.03.001

Cited by 63 publications

(72 citation statements)

References 27 publications

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“…The patients' lack of energy (fatigue) put a strain on their social relations, and fatigue has been confirmed as the most debilitating symptom by earlier studies (Molassiotis et al, 2010;Osoba, Brada, Prados, & Yung, 2000). Symptom clusters among patients with HGG (N = 73) have been identified and include symptoms of depression, fatigue, sleep disturbance, cognitive impairment with an impact on QOL, and reduced functional status (Fox, Lyon, & Farace, 2007).…”

Section: Discussionmentioning

confidence: 84%

“…Studies report a high symptom burden and a range of complications among patients with HGG (Armstrong, Cohen, Eriksen, & Hickey, 2004;Ownsworth, Chambers, Hawkes, Walker, & Shum, 2011;Taphoorn & Klein, 2004). Different types of cerebral symptoms and complications may occur, including global cerebral symptoms (fatigue, nausea, headache, confusion), focal symptoms (hemiparesis, seizures, speech difficulties), neurocognitive deficits (impaired attention, concentration difficulties, reduced short-term memory, personality changes), and distressing emotional and psychological reactions (depression, anxiety, stress;Boele, Klein, Reijneveld, Verdonck-de Leeuw, & Heimans, 2014;Kim et al, 2013;Klein et al, 2003;Lovely, Miaskowski, & Dodd, 1999;Molassiotis et al, 2010). Survival and quality of life (QOL) are negatively influenced by this complexity of symptoms and complications.…”

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confidence: 97%

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Daily Life Experiences of Patients With a High-Grade Glioma and Their Caregivers

Piil

Juhler

Jakobsen

et al. 2015

Journal of Neuroscience Nursing

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The individual and sometimes opposing preferences among patients and their caregivers for prognostic information is a chosen strategy that supports individual needs in managing the HGG trajectory. Patients and caregivers experience a feeling of solidarity, from which shared hope arises; however, this hope needs to be supported by healthcare professionals. Driven by hope, they seek to optimize the therapeutic effect of the oncological treatments by being engaged together in health promoting activities. As symptoms progressed, the need for information and guidance regarding symptoms and supportive care interventions became evident. Caregivers play a significant supporting role for the patients and need special support themselves and practical assistance especially when symptoms progress. Finally, there is a need for rehabilitation programs that target the cognitive ability of the patients to participate actively.

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Section: Discussionmentioning

confidence: 84%

mentioning

confidence: 97%

Daily Life Experiences of Patients With a High-Grade Glioma and Their Caregivers

Piil

Juhler

Jakobsen

et al. 2015

Journal of Neuroscience Nursing

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“…While coping strategies were already studied among children with brain tumors [29] and in patients with low-grade gliomas [30], only limited amounts of data are available concerning the strategies used by people with a HHG [31]. While Molassiotis et al [32] reported that patients usually begin to organize their lives more, accept their limitations and find ways to manage limitations after 6 months of the disease diagnosis, limited information is available related to the onset of the disease.…”

Section: Discussionmentioning

confidence: 97%

Coping with a newly diagnosed high-grade glioma: patient-caregiver dyad effects on quality of life

et al. 2016

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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.

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“…However, the individual variations show that some patients with baseline scores Severe cases C16 0 (0) 1 (3.4) 0 (0) 0 (0) 0 (0) Depression mean ± SD 6.1 ± 3.5 5.7 ± 4.0 6.0 ± 3.9 3.9 ± 3.3 b 3.7 ± 3. [9,[40][41][42][43] causes severe limitations of daily activities and reduce QOL [44], being followed by distressful emotional and psychological reactions such as depression [45][46][47][48][49]. Finally, brain tumour histology and grade of malignancy affect the production and release of biological factors that cause depressive symptoms [50].…”

Section: Discussionmentioning

confidence: 99%

Health-related quality of life in patients with high-grade gliomas: a quantitative longitudinal study

et al. 2015

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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) completed questionnaires at 5 time points from time of diagnosis until the final follow-up after 1 year. Scores of Karnofsky Performance Status (KPS), physical activity, anxiety and depression and health-related quality of life (FACT-Br) are obtained. Patients' physical activity level and KPS decrease during the disease- and treatment trajectory. The majority of patients did not report any depressive symptoms, eight individuals (26.7 %) being depressed at various time points. Among a sub-group of participants who completed all study requirements for the entire study period the level of anxiety decreased significantly during the study. The FACT-Br sub-scale of emotional well-being increased significant, indicating a better HRQOL attend of followup. The diagnosis of a HGG leads to an ongoing functional decline measured as a decline of the KPS and a reduced physical activity during leisure time. Supportive care combined with rehabilitative and palliative approaches might well be valuable along the trajectory especially during the post-surgery period when anxiety is at its highest peak.

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Symptom experience in patients with primary brain tumours: A longitudinal exploratory study

Cited by 63 publications

References 27 publications

Daily Life Experiences of Patients With a High-Grade Glioma and Their Caregivers

Daily Life Experiences of Patients With a High-Grade Glioma and Their Caregivers

Coping with a newly diagnosed high-grade glioma: patient-caregiver dyad effects on quality of life

Health-related quality of life in patients with high-grade gliomas: a quantitative longitudinal study

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