The purpose of this study was to better understand the lived experience of functional decline for people with advanced cancer living at home | BMJ Supportive & Palliative Care
Context: People with advanced cancer experience bodily change resulting in debilitating functional decline. Although inability to participate in everyday activities (occupation) contributes to profound suffering, limited research has examined the relationship between altered bodily experience (embodiment) and functional ability.
Conclusions: This study highlights the role active participation in everyday activities plays in mediating adjustment to functional decline. These findings challenge us to look beyond palliation of physical symptoms and psychospiritual care as ends in themselves. Symptom control and palliation should be viewed as mechanisms to optimise active participation in essential and valued activities.
Full reference: et al. (2017) Living actively in the face of impending death: constantly adjusting to bodily decline at the end-of-life.
Anneke Ullrich et. al. Quality of life, psychological burden, needs, and satisfaction during specialized inpatient palliative care in family caregivers of advanced cancer patients BMC Palliative Care. Published online 10 May 2017.
This pilot study aimed to investigate quality of life, psychological burden, unmet needs, and care satisfaction in family caregivers of advanced cancer patients (FCs) during specialized inpatient palliative care (SIPC) and to test feasibility and acceptance of the questionnaire survey.
During a period of 12 weeks, FCs were recruited consecutively within 72 h after the patient’s admission. They completed validated scales on several outcomes: quality of life (SF-8), distress (DT), anxiety (GAD-7), depression (PHQ-9), supportive needs (FIN), palliative care outcome (POS), and satisfaction with care (FAMCARE-2). We used non-parametric tests, t-tests and correlation analyses to address our research questions.
FCs showed high study commitment: 74 FCs were asked to participate whereof 54 (73%) agreed and 51 (69%) returned the questionnaire. Except for “bodily pain”, FCs’ quality of life (SF-8) was impaired in all subscales. Most FCs (96%) reported clinically significant own distress (DT), with sadness, sorrows and exhaustion being the most distressing problems (80–83%). Moderate to severe anxiety (GAD-7) and depression (PHQ-9) were prevalent in 43% and 41% of FCs, respectively. FCs scored a mean number of 16.3 of 20 needs (FIN) as very or extremely important (SD 3.3), 20% of needs were unmet in >50% of FCs. The mean POS score assessed by FCs was 16.6 (SD 5.0) and satisfaction (FAMCARE-2) was high (73.4; SD 8.3).
This pilot study demonstrated feasibility of the questionnaire survey and showed relevant psychosocial burden and unmet needs in FCs during SIPC. However, FCs’ satisfaction with SIPC seemed to be high.
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Björkhem-Bergman, L. & Bergman, P. BMJ Supportive & Palliative Care. Published Online: 15 April 2016
Vitamin D is a hormone that is synthesised in the skin in the presence of sunlight. Sufficient vitamin D levels are important—not only for a healthy skeleton—but also for a healthy immune system.
Many patients with cancer have insufficient vitamin D levels, and low vitamin D levels are associated with increased ‘all-cause mortality’ and especially mortality due to cancer. Low vitamin D levels have also been associated with increased risk of infections, increased pain, depressive disorders and impaired quality of life.
We review the role of vitamin D in the immune system, in relation to cancer disease, pain and depression. We have recently performed an observational study in 100 patients with palliative cancer in Sweden.
The main result was that low vitamin D levels were associated with higher opioid dose, that is, more pain. We also describe a case report where vitamin D supplementation resulted in radically decreased opioid dose, less pain and better well-being.
Vitamin D supplementation is not connected with any adverse side effects and is easy to administrate. Thus, we hypothesise that vitamin D-supplementation to patients with palliative cancer might be beneficial and could improve their well-being, decrease pain and reduce susceptibility to infections. However, more clinical studies in this field are needed before firm conclusions can be drawn.
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Krug, K. et al. (2016) BMC Palliative Care: 15(4)
Background: Family caregivers play a key role in palliative care at home, and understanding the interdependencies in the constellation of patient, family caregivers and service providers is important. As few longitudinal studies have examined the influence of patient quality of life (QoL) in palliative care on burden of family caregivers, the aim of this study was to identify correlations between changing patient QoL and changing burden of family caregivers that need consideration in patient management.
Methods: Palliative patients with cancer in primary care evaluated their QoL (Quality of Life Questionnaire Core 15 Palliative Care, QLQ-C15-PAL). They were assessed monthly for an interval of 6 months or until death of the patient. Family caregivers reported the burden they perceived while supporting the patient (Short form of the Burden Scale for Family Caregivers, BSFC). Longitudinal data were analysed for all patients with at least 3 available assessments, considering the most recent data for participants with more than 3 assessments. Changes in patient QoL were analysed using the Friedman test. In a stepwise regression analysis, influences of change in patient QoL on changing caregiver burden were investigated.
Results: One hundred patients (63 men, 37 women; average age: 68 years) were enrolled in the study. The most common primary diagnoses were colon, lung or breast cancer. In 58 cases, assessments were available from both patients and caregivers. Patients reported overall quality of life increasing towards end of life, although reporting that physical functioning deteriorated. Symptoms of pain and fatigue bothered patients most. Caregiver burden was moderate and on average did not change over time. In a stepwise regression model, the difference in emotional functioning and the difference in dyspnoea showed an influence on the development of caregiver burden (explained variance of 19.3 %).
Conclusions: Patients’ dyspnoea, feelings of depression and anxiety impacted on the perceived burden of family caregivers, but are manageable symptoms. Our results corroborate the need of regular assessment of patients’ needs taking into account caregiver burden. In this way, general practice teams can intervene early and may more likely meet patients’ needs in the end of life care process.
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