The influence of symptom severity of palliative care patients on their family caregivers.

BACKGROUND: This study anlyzed whether family caregivers of patients with advanced cancer suffer impaired sleep quality, increased strain, reduced quality of life or increased care burden due to the presence and heightened intensity of symptoms in the person being cared for. METHOD: A total of 41 patient-caregiver dyads (41 caregivers and 41 patients with advanced cancer) were recruited at six primary care centres in this cross-sectional study. Data were obtained over a seven-month period. Caregiver's quality of sleep (Pittsburgh Sleep Quality Index), caregiver's quality of life (Quality of Life Family Version), caregiver strain (Caregiver Strain Index), patients' symptoms and their intensity (Edmonton Symptom Assessment System), and sociodemographic, clinical and care-related data variables were assessed. The associations were determined using non-parametric Spearman correlation. RESULTS: Total Edmonton Symptom Assessment System was significantly related to overall score of the Pittsburgh Sleep Quality Index (r = 0.365, p = 0.028), the Caregiver Strain Index (r = 0.45, p = 0.005) and total Quality of Life Family Version (r = 0.432, p = 0.009), but not to the duration of daily care (r = -0.152, p = 0.377). CONCLUSIONS: Family caregivers for patients with advanced cancer suffer negative consequences from the presence and intensity of these patients' symptoms. Therefore, optimising the control of symptoms would benefit not only the patients but also their caregivers. Thus, interventions should be designed to improve the outcomes of patient-caregiver dyads in such cases.

Complementary music therapy for cancer patients in at-home palliative care and their caregivers: protocol for a multicentre randomised controlled trial.

BACKGROUND: Patients with advanced cancer, receiving at-home palliative care, are subject to numerous symptoms that are changeable and often require attention, a stressful situation that also impacts on the family caregiver. It has been suggested that music therapy may benefit both the patient and the caregiver. We propose a study to analyse the efficacy and cost utility of a music intervention programme, applied as complementary therapy, for cancer patients in palliative care and for their at-home caregivers, compared to usual treatment. METHOD: A randomised, double-blind, multicentre clinical trial will be performed in cancer patients in at-home palliative care and their family caregivers. The study population will include two samples of 40 patients and two samples of 41 caregivers. Participants will be randomly assigned either to the intervention group or to the control group. The intervention group will receive a seven-day programme including music sessions, while the control group will receive seven sessions of (spoken word) therapeutic education. In this study, the primary outcome measure is the assessment of patients' symptoms, according to the Edmonton Symptom Assessment System, and of the overload experienced by family caregivers, measured by the Caregiver Strain Index. The secondary outcomes considered will be the participants' health-related quality of life, their satisfaction with the intervention, and an economic valuation. DISCUSSION: This study is expected to enhance our understanding of the efficacy and cost-utility of music therapy for cancer patients in palliative care and for their family caregivers. The results of this project are expected to be applicable and transferrable to usual clinical practice for patients in home palliative care and for their caregivers. The approach described can be incorporated as an additional therapeutic resource within comprehensive palliative care. To our knowledge, no previous high quality studies, based on a double-blind clinical trial, have been undertaken to evaluate the cost-effectiveness of music therapy. The cost-effectiveness of the project will provide information to support decision making, thereby improving the management of health resources and their use within the health system. TRIAL REGISTRATION: The COMTHECARE study is registered at Clinical Trials.gov, NCT04052074. Registered 9 August, 2019.

Intervention to improve quality of sleep of palliative patient carers in the community: protocol for a multicentre randomised controlled trial.

BACKGROUND: Sleep disorders are commonly experienced by community caregivers for persons with cancer, with at least 72% reporting moderate to severe disorders. A consequence of this condition, which is associated with the presence of overload in the caregiver, is the increased risk of clinical depression. The aim of this study is to evaluate the effects of music on the sleep quality achieved by informal caregivers for cancer patients receiving home palliative care. In addition, we will assess the influence of specific variables that could modify these effects, analyse the correlates related to nocturnal wakefulness and consider the diurnal consequences according to the sleep characteristics identified. METHODS: This single-blind, multicentre, randomised clinical trial will focus on informal providers of care for cancer patients. Two samples of 40 caregivers will be recruited. The first, intervention, group will receive seven music-based sessions. The control group will be masked with seven sessions of therapeutic education (reinforcing previous sessions). Outcomes will be evaluated using the Pittsburgh Sleep Quality Index, a triaxial accelerometer, EuroQol-5D-5L, the Caregiver Strain Index, the Epworth Sleepiness Scale and the Client Satisfaction Questionnaire. The caregivers' satisfaction with the intervention performed will also be examined. DISCUSSION: This study is expected to extend our understanding of the efficacy of music therapy in enhancing the sleep quality of caregivers for patients receiving home palliative care. To our knowledge, no reliable scientific investigations of this subject have previously been undertaken. Music is believed to benefit certain aspects of sleep, but this has yet to be proven and, according to a Cochrane review, high-quality research in this field is necessary. One of the main strengths of our study, which heightens the quality of the randomised clinical trial design, is the objective assessment of physical activity by accelerometry and the use of both objective and subjective measures of sleep in caregivers. Music therapy for the caregivers addressed in this study is complementary, readily applicable, provokes no harmful side effects and may produce significant benefits. TRIAL REGISTRATION: The IMECA study is registered at Clinical Trials.gov, ClinicalTrials.gov Identifier: NCT04491110 . Registered 29 July, 2020.

Effect of Self-Chosen Music in Alleviating the Burden on Family Caregivers of Patients with Advanced Cancer: A Randomised Controlled Trial.

The experience of caregiver burden among family members of patients with advanced cancer is a common problem. The aim of this study was to determine whether the burden may be alleviated by means of a therapeutic approach based on self-chosen music. This randomised controlled trial (ClinicalTrials.gov, NCT04052074. Registered 9 August 2019) included 82 family caregivers of patients receiving home palliative care for advanced cancer. The intervention group (n = 41) listened to pre-recorded, self-chosen music for 30 min/day for seven consecutive days, while the control group (n = 41) listened to a recording of basic therapeutic education at the same frequency. The degree of burden was assessed by the Caregiver Strain Index (CSI), calculated before and after the seven-day intervention. According to this measure, caregiver burden fell significantly in the intervention group (CSI change: -0.56, SD 2.16) but increased in the control group (CSI change: +0.68, SD 1.47), with a significant group x moment interaction F(1, 80) = 9.30, p = 0.003, η2p = 0.11. These results suggest that, in the short term at least, the use of therapy based on self-chosen music alleviates the burden on family caregivers of palliative cancer patients. Moreover, this therapy is easy to administer at home and does not present any problems in practice.

Cancer Patients' Satisfaction with In-Home Palliative Care and Its Impact on Disease Symptoms.

The aim of the study was to determine whether the satisfaction of cancer patients with in-home palliative care is associated with the impact of disease symptoms and with self-perceived quality of life. This was a cross-sectional descriptive study, conducted in the primary health care sector in six clinical management units, where 72 patients were recruited over a period of six months. The severity of symptoms was determined by the Edmonton Symptom Assessment System (ESAS). Quality of life was evaluated with the EORTC QLQ-C30 (version 3) questionnaire, and patients' satisfaction with the care received was evaluated by the Client Satisfaction Questionnaire (CSQ-8). The patients' satisfaction with the health care received was represented by an average score of 6, on a scale of 1-10; thus, there is room for improvement in patient satisfaction. Moreover, it was found that more intense symptoms and lower quality of life are associated with lower satisfaction with health care received (p = 0.001). Similarly, when symptoms are more severe, the quality of life is lower (p < 0.001). The identification of fatigue, reduced well-being, pain, drowsiness, and depression as the symptoms experienced with the highest intensity by our patients provides valuable information for health care providers in developing individualized symptom management plans for patients with advanced cancer.

Predictors of sleep disturbances in caregivers of patients with advanced cancer receiving home palliative care: A descriptive cross-sectional study.

PURPOSE: To evaluate the quality of sleep in caregivers of patients with advanced cancer receiving home palliative care, basing the analysis on subjective and objective measures, and to develop a predictive model of sleep disturbances among this population. METHOD: A descriptive cross-sectional study was conducted in six clinical management units within primary healthcare centres. Data were obtained during a period of six months, from a sample population of 41 caregivers. The Pittsburgh Sleep Quality Index (PSQI) and a 7-day accelerometry evaluation were performed to assess sleep quality. Daytime sleepiness, caregiver strain and quality of life were also evaluated. RESULTS: According to the PSQI, 90.2% of participants had poor sleep quality. The average duration of night-time sleep, measured by accelerometry and the PSQI, was 6 h. Taking PSQI as the dependent variable, the study model predicted 40.7% of the variability (p < 0.01). The variables "Caregiver strain" and "Daily hours dedicated to care" produced the following results: B coefficient 0.645; p = 0.001; and B coefficient 0.230; p = 0.010, respectively. CONCLUSIONS: The caregivers presented significant health-related alterations, including sleep disturbances, which were directly related to two variables: the index of caregiver strain and the number of hours per day dedicated to providing care.