Quality of life among patients with a brain tumor and their carers

Janda, Monika; Steginga, Suzanne K.; Langbecker, Danette; Dunn, Jeff; Walker, David G.; Eakin, Elizabeth G.

doi:10.1016/j.jpsychores.2007.06.018

Cited by 161 publications

(147 citation statements)

References 42 publications

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“…Without good health and social care, support carers may be tied to the home, leading to difficulties in going to work and accessing support outside of the home. In a study by Janda et al (2007) a correlation was found between carers' and patients' overall quality of life, with patients and carers in the same household reporting similar reductions in emotional and social wellbeing.…”

mentioning

confidence: 98%

“…Poor cognitive functioning has been linked to high levels of stress and anxiety in carers (Pinquart et al, 2003). Managing relationships, cognitive diffi culties, personality changes and symptoms such as fatigue can be exhausting and anxiety provoking for carers (Janda et al, 2007(Janda et al, , 2008. Despite the demands on carers it is reported that for some people, family relationships can become stronger and closer, despite behavioural and personality changes (Cook 2005;Arber et al 2007).…”

mentioning

confidence: 99%

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A study of patients with a primary malignant brain tumour and their carers: symptoms and access to services

Arber¹,

Faithfull

Plaskota

et al. 2010

Int J Palliat Nurs

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Aim: To investigate the symptom experience, access to supportive care services and rehabilitation of patients with a primary malignant brain tumour (PMBT) and their carers. Methods: A case review of 70 patients with a diagnosis of PMBT who received palliative care in fi ve specialist palliative care units between July 2005 and June 2006. The review examined patients' symptom experience, care issues, access to rehabilitation and access to supportive care services. Results: The two most signifi cant issues experienced by patients and identifi ed in the case review were hemiparesis (17%) and cognitive problems (16%). There were a number of care problems concerning safety related to mobility and falls (9%). Symptoms related to fatigue and tiredness were reported infrequently. There was an absence of information relating to the needs of informal carers; however, 18% of carers accessed bereavement counselling services following the death of the person they cared for. Conclusion: The needs of carers were not found to be routinely documented within the case notes. For some patients, referral to specialist palliative care services occur late in the illness trajectory, which means that patients and carers may not be able to access the full range of supportive care services available. Initial assessment of patients should identify the range of support services that both carers and patients are offered; and the uptake and response to services should be documented throughout the illness trajectory.

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confidence: 98%

mentioning

confidence: 99%

A study of patients with a primary malignant brain tumour and their carers: symptoms and access to services

Arber¹,

Faithfull

Plaskota

et al. 2010

Int J Palliat Nurs

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“…On the 200-point FACT-Br scale, the mean patient score was 131.8+27.6 points (median, 135.5; mean FACT-G, 79.2+16.1), which is highly consistent with scores reported in previous studies of QOL in glioma. 3,24 Although our analysis suggested that patients in this study reported total FACT-Br scores that were on average 4.75 (95% CI,1.44 -8.05) points higher than their caregivers reported in simultaneous assessments (P ¼ .008), this difference would not be deemed clinically significant using a benchmark of half of the standard deviation in FACT-Br scores or 13.8 points. 21 Likewise, none of the patient-caregiver differences in subscale scores exceeded the corresponding clinically significant difference thresholds as presented in Table 2.…”

Section: Discussionmentioning

confidence: 57%

Concordance of patient and caregiver reports in evaluating quality of life in patients with malignant gliomas and an assessment of caregiver burden

Jacobs

Kumthekar

Stell

et al. 2014

Neuro-Oncology Practice

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“…Irrespective of the level of functioning or disability, the consequences of glioma can hinder patients in participating fully in vocational and social activities, affecting the quality of life (QOL) of both patients and their family members to a great extent (Janda et al 2007;Taphoorn et al 2010;Aaronson et al 2011). As the disease progresses, patients rely more heavily on their loved ones for physical and emotional support.…”

Section: Background Gliomasmentioning

confidence: 99%

“…Especially the quality of life of those caregivers of patients with more aggressive, high-grade tumours appears to be vulnerable compared with both the normative population (Flores et al 2014;Janda et al 2007) and other caregiver populations (Boele et al 2013a). While this negative effect may be attenuated by personality traits and coping strategies (Baumstarck et al 2016), the physical and emotional consequences of caregiving are often hypothesized to influence the quality of care delivered to glioma patients in the home.…”

Section: Consequences Of Family Caregivingmentioning

confidence: 99%

Challenges and support for family caregivers of glioma patients

Boele

Grant²,

Sherwood

2017

British Journal of Neuroscience Nursing

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Glioma patients are not only confronted with the diagnosis and treatment of cancer, but often experience disease-specific symptoms that greatly affect everyday life. Common symptoms among patients include motor dysfunction, sensory loss, seizures, cognitive deficits, changes in behaviour and personality, mood issues, and fatigue. This review focuses on family caregivers, for whom dealing with the diagnosis and treatment of a brain tumour in their loved one while managing disease-specific symptoms can be challenging. Supportive interventions to assist caregivers have been reported, but high quality scientific evidence for the effectiveness of these programs is largely lacking. Further research is needed to determine how we can best support family caregivers to manage glioma patients' symptoms while maintaining their own health as a caregiver. Research is also required in evaluating the health economic benefits of support programs for caregivers, as better care for caregivers may potentially reduce overall healthcare costs. KeywordsFamily caregiving; informal caregiving; glioma; brain tumour; supportive care Key points-Psychological distress is reported in approximately half of family caregivers in neuro-oncology; -Providing assistance for family caregivers may prevent them from developing emotional or physical problems themselves; -Research shows that family caregivers of glioma patients can benefit from information and concrete advice on dealing with everyday difficulties; -More research is needed as large-scale implementation of caregiver support may be hindered by the lack of high quality scientific evidence for the beneficial effects of caregiver interventions in neuro-oncology.

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Quality of life among patients with a brain tumor and their carers

Cited by 161 publications

References 42 publications

A study of patients with a primary malignant brain tumour and their carers: symptoms and access to services

A study of patients with a primary malignant brain tumour and their carers: symptoms and access to services

Concordance of patient and caregiver reports in evaluating quality of life in patients with malignant gliomas and an assessment of caregiver burden

Challenges and support for family caregivers of glioma patients

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