Needs and preferences among patients with high-grade glioma and their caregivers - A longitudinal mixed methods study

Piil, Karin; Jakobsen, Janus Christian; Juhler, Marianne; Guetterman, Timothy C.; Fetters, Micheal D; Jarden, Mary

doi:10.1111/ecc.12806

Cited by 54 publications

(61 citation statements)

References 48 publications

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“…As in other studies, the caregivers of our patients reported high distress, even higher than that of the patients ( 1 , 2 , 22 , 23 ). Our caregivers were mostly life partners accompanying their relative to the consultation.…”

Section: Discussionsupporting

confidence: 85%

“…Caregivers face challenging situations as well, sometimes even more so than glioma patients. The neurological, psychological and cognitive symptoms of patients with gliomas represent significant challenges to their caregivers: Not only do they have to cope with the diagnosis of the family member, with the therapy and the knowledge that they will finally lose their partner or parent or child, but also accept changes in roles, relationships, social isolation, financial restriction and sooner or later, have to take care of the partner or family member day and night ( 19 – 23 ).…”

Section: Introductionmentioning

confidence: 99%

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Supportive Care Needs in Glioma Patients and Their Caregivers in Clinical Practice: Results of a Multicenter Cross-Sectional Study

et al. 2018

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Objective: Supportive care needs in glioma patients often remain unrecognized, and optimization in assessment is required. First, we aimed at assessing the support needed using a simple structured questionnaire. Second, we investigated the psychosocial burden and support requested from caregivers.Methods: Patients were assessed at three centers during their outpatient visits. They completed the Distress Thermometer (DT; score ≥ 6 indicated significant burden in brain tumor patients), the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ)-C30+BN20, and the Patients' Perspective Questionnaire (PPQ) that assessed psychosocial distress as well as support requested and received by patients for specific domains (e.g., family, doctor, and mobile care). In each subgroup, patients' caregivers were assessed simultaneously by a questionnaire developed for the study. Multivariate backward logistic regressions were performed for investigating predictors of patients' request for support.Results: Assessments were conducted for 232 patients. Most patients (82%) had a high-grade glioma and a mean age of 52 years (range 20–87). The male to female ratio was 1.25:1. According to the PPQ results, 38% (87) of the patients felt depressed; 44% (103), anxious; and 39% (91), tense/nervous. Desired support was highest from doctors (59%) and psychologists (19%). A general request for support was associated with lower global health status (p = 0.03, odds ratio (OR) = 0.96, 95% CI: 0.92–0.99) according to EORTC QLQ-C30. Most of the assessed caregivers (n = 96) were life partners (64%; n = 61) who experienced higher distress than the corresponding patients (caregivers: 6.5 ± 2.5 vs. patients: 5.3 ± 2.4). When patients were on chemotherapy, caregivers indicated DT ≥ 6 significantly more frequently than patients themselves (p = 0.02).Conclusion: Our data showed that glioma patients and their caregivers were both highly burdened. The PPQ allowed us to evaluate the psychosocial support requested and perceived by patients, detect supportive care needs, and provide information at a glance. Patients in poorer clinical condition are at risk of having unmet needs. The caregivers' burden and unmet needs are not congruent with the patients' need for support. In particular, caregivers of patients on chemotherapy were more highly burdened than patients themselves.

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Section: Discussionsupporting

confidence: 85%

Section: Introductionmentioning

confidence: 99%

Supportive Care Needs in Glioma Patients and Their Caregivers in Clinical Practice: Results of a Multicenter Cross-Sectional Study

et al. 2018

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“…Brain tumor patients desire interventions that will help them redefine hope and improve their HRQoL . The current review was only able to identify two RCTs where the intervention group showed significant improvement in HRQoL over the control group(s)—a home‐based psychosocial intervention and individualized acupuncture combined with standard rehabilitation .…”

Section: Resultsmentioning

confidence: 99%

Patient‐reported health‐related quality of life outcomes in supportive‐care interventions for adults with brain tumors: A systematic review

et al. 2018

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Objectives The objectives of this systematic review were to (a) identify supportive‐care (psychosocial/behavioral, pharmacological, complementary, or alternative) interventions that have been evaluated via randomized controlled trials (RCTs) to improve patient‐reported health‐related quality of life (HRQoL) among adults with brain tumors, (b) evaluate the quality of the intervention studies, and (c) evaluate if developed interventions have been efficacious at improving HRQoL, as compared with control conditions in RCTs. Methods This systematic review was conducted using preferred reporting items for systematic reviews and meta‐analyses (PRISMA) guidelines. Four databases were searched for RCTs of supportive‐care interventions for adults with brain tumors, primary or metastatic, that included a patient‐reported HRQoL outcome. Quality of the included studies was assessed using the Effective Public Health Practice Project Quality Assessment Tool for Quantitative Studies. Results Ten RCTs involving 640 patients with either a primary or metastatic brain tumor investigating supportive‐care interventions with a HRQoL outcome were identified. In terms of quality, three of the studies received a “strong” rating, three received a “moderate” rating, and four of the studies received a “weak” rating. Only two of the interventions (ie, a home‐based psychosocial intervention and individualized acupuncture with standard rehabilitation) demonstrated improvements in HRQoL over control conditions. Conclusions HRQoL is of the utmost importance when treating patients with brain tumors. Yet there is a notable paucity of research to inform clinical decisions and evidence‐based practice. More high‐quality studies of interventions aimed at improving HRQoL are needed.

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“…As in the longitudinal study by Piil et al ,26 the present study identifies a proactive attitude on the part of the patients and an immediate need to engage themselves actively to optimise the effect of the standard oncological treatment in the form of surgery, radiotherapy and chemotherapy. The interviews in the present study also showed a link between proactive health behaviour and general psychological well-being.…”

Section: Discussionmentioning

confidence: 68%

Finding ‘the inner drive’ for a rehabilitation process: a small-scale qualitative investigation among male patients with primary glioma

et al. 2019

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ObjectiveBrain tumours are relatively rare but hold a significant place in cancer rehabilitation due to their pronounced disabling capacity to promote physical, cognitive and psychosocial sequelae. This small-scale qualitative study used coping and motivational theories to gain understanding and knowledge of patients’ experience of being diagnosed with a severe disease and of their view of a rehabilitation process.DesignQualitative interview study.SettingOdense University Hospital, Denmark.InformantsFive patients (men, aged 30–79 years) with primary glioma who had participated in a rehabilitation intervention.MethodsSemi-structured interviews were conducted. The phenomenological interpretive analysis was used to analyse the interviews.ResultsThe analysis revealed three main themes: (1) coping with a new life situation, (2) motivating and maintaining elements and (3) experience of the benefit of the rehabilitation programme.ConclusionThe study concluded that interviewed informants use problem-solving coping strategies, which make them more active in their health behaviour. However, passive and emotion-focused strategies related to confronting diagnosis may be used in some cases. The motivational aspect is multifaceted. Personal and interpersonal elements alongside a competitive setting are crucial to self-efficacy and benefit. The intervention’s impact on health-related quality of life also has the potential to increase patients’ resources to manage their situation.Trial registration number NCT02221986

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Needs and preferences among patients with high-grade glioma and their caregivers - A longitudinal mixed methods study

Cited by 54 publications

References 48 publications

Supportive Care Needs in Glioma Patients and Their Caregivers in Clinical Practice: Results of a Multicenter Cross-Sectional Study

Supportive Care Needs in Glioma Patients and Their Caregivers in Clinical Practice: Results of a Multicenter Cross-Sectional Study

Patient‐reported health‐related quality of life outcomes in supportive‐care interventions for adults with brain tumors: A systematic review

Finding ‘the inner drive’ for a rehabilitation process: a small-scale qualitative investigation among male patients with primary glioma

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