An Integrative Review of Factors Associated With Symptom Burden at the End of Life in Children With Cancer

2020 ◽  
Vol 37 (4) ◽  
pp. 284-295 ◽  
Author(s):  
Ijeoma Julie Eche ◽  
Ifeoma Mary Eche ◽  
Teri Aronowitz

Children with cancer experience multiple symptoms at end of life (EOL) that impair their health-related quality of life. Using the Preferred Reporting Items for Systematic reviews and Meta-Analyses guidelines, this integrative literature review comprehensively summarized symptom experiences of children with cancer at EOL. The Cumulative Index to Nursing and Allied Health Literature (CINAHL), PubMed, and Academic Premier were searched between January 2007 to September 2019 for articles published in English using the MeSH terms: symptom burden or distress AND children with cancer or pediatric cancer or cancer children or oncology and pediatrics AND EOL care or palliative care or death or dying or terminally ill. The inclusion criteria were the following: (a) study designs [randomized controlled trials, nonexperimental, secondary analysis (if aims were distinct from primary studies) and qualitative]; (b) participants <18 years old (died of cancer, had no realistic chance of cure, or had advanced cancer); and (c) focused on symptom experiences/burden at EOL. Exclusion criteria were nonresearch articles, systematic reviews, case studies, reports, and studies that focused on cancer survivors and/or those receiving curative therapies. Twenty-seven articles met inclusion criteria. The most prevalent symptoms—pain, fatigue, dyspnea, and loss of appetitewere associated with impairments in health-related quality of life. Children with brain tumors experienced higher symptom burden compared to those with hematologic/solid malignancies. Children who received cancer-directed therapies experienced disproportionate symptoms and were more likely to die in the intensive care unit compared with those who did not receive cancer-directed therapies. Most common location of death was home. This integrative review indicated that children with cancer were polysymptomatic at EOL. Strategies facilitating effective symptom management at EOL are needed.

2009 ◽  
Vol 89 (5) ◽  
pp. 443-455 ◽  
Author(s):  
Stefania Costi ◽  
Mauro Di Bari ◽  
Paolo Pillastrini ◽  
Roberto D'Amico ◽  
Ernesto Crisafulli ◽  
...  

Background, Objectives, and Measurements Patients with chronic airway obstruction (CAO) frequently experience dyspnea and fatigue during activities performed by accessory muscles of ventilation, which competitively participate in arm elevation. This systematic review of randomized controlled trials (RCTs) concerning patients with CAO addresses the effects of upper-extremity exercise training (UEET), added to lower-extremity training or comprehensive pulmonary rehabilitation, on the following patient-centered outcomes: exercise capacity, symptoms, ability to perform daily activities, and health-related quality of life. Methods Studies were retrieved using comprehensive database and hand-search strategies. Two independent reviewers determined study eligibility based on inclusion criteria. A detailed description of treatments was mandatory. Reviewers rated study quality and extracted information on study methods, design, intervention, and results. Results Forty publications were evaluated. Four RCTs met the inclusion criteria but had serious methodological limitations, which introduce possible biases that reduce their internal validity. The outcomes measured were heterogeneous, and the results were inconsistent regarding maximal exercise capacity, dyspnea, and health-related quality of life. No effect of UEET was demonstrated for measures of arm fatigue. Limitations and Conclusions The limited methodological quality of the studies retrieved prevented us from performing a meta-analysis, the results of which could be misleading. This systematic review shows that there is limited evidence examining UEET and that the evidence available is of poor quality. Therefore, a recommendation for the inclusion or exclusion of UEET in pulmonary rehabilitation programs for individuals with CAO is not possible. Further research is needed to definitively ascertain the effects of this training modality on patient-centered outcomes.


2020 ◽  
Author(s):  
Tayseer Afifi ◽  
Khamis Elessi ◽  
Obay Baraka ◽  
Mohammed Omar ◽  
Israa Ahmad ◽  
...  

Abstract Purpose This study aims to evaluate health-related quality of life among children with different chronic conditions and make a comparison among them. In addition, the study will draw a comparison between children’s perspective about their quality of life and parents’ perspective. Furthermore, the study will address the associations between quality of life with disease severity, duration and the presence of other co-morbidities. Methods This was a prospective, analytical, correlational study design in which Pediatric Quality of Life Inventory (PedsQL 4.0 generic core scale) was administered to assess quality of life on 110 children; 50 children with cancer, 30 children with thalassemia and 30 children undergoing hemodialysis. Researchers interviewed children as well as their parents. Results Results showed that children with Thalassemia had the lowest scores and suffered from poor quality of life compared to the other two groups of children. Interestingly, quality of life level among children undergoing dialysis was lower than children with cancer. However, there were marked discrepancy between child’s and parents’ answers on scale questions. The level of quality of life, in all children, were statistically significant in relation with family size, income and parents’ education. Conclusion We identified high prevalence of poor level of health-related quality of life among children included in this study. The findings support that the quality of life among children with chronic conditions should receive more attention in our local medical settings.


Author(s):  
Grete K. Velure ◽  
Bernd Müller ◽  
May Aa. Hauken

Abstract Purpose Curative radiotherapy for cancer may lead to severe late radiation tissue injuries (LRTIs). However, limited knowledge exists about pelvic cancer survivors’ LRTI symptoms, distress, and health-related quality of life (HRQOL). We sought to assess the symptom burden, distress, and HRQOL in survivors with established pelvic LRTIs compared to norm populations and to investigate the relation between these factors. Methods Cancer survivors referred for treatment of established pelvic LRTIs were recruited nationwide. LTRIs were assessed with the Expanded Prostate Cancer Index Composite (EPIC), psychological distress was assessed with the General Health Questionnaire (GHQ-12), and HRQOL was assessed with the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORCT-QLQ-C30). Results A total of 107 participants (mean age 64, 53% men) were included. Compared to norms, participants reported more urinary (mean 68.7 vs. 89.5; p = 0.00; d = 1.4) and bowel symptoms (mean 62.5 vs. 92.4; p = 0.00; d = 2.7), increased psychological distress (mean 13.4 vs. 10.3; p = 0.00; d = 0.6), and overall poorer HRQOL (mean 54.9 vs. 71.2; p = 0.00; d = 0.7). Higher symptom burden and higher levels of psychological distress were associated with lower HRQOL (r2 = 46%), but psychological distress did not moderate the influence of symptoms on HRQOL. Conclusion Cancer survivors with established pelvic LRTIs are highly burdened compared to norms. The association of the LRTI-related symptom burden with HRQOL is independent of the level of psychological distress. Both coping and treatment interventions are crucial to promoting long-term health and HRQOL. Trial registration NCT03570229.


2009 ◽  
Vol 76 (12) ◽  
pp. 1231-1235 ◽  
Author(s):  
Susmitha Chirivella ◽  
Senthil Rajappa ◽  
Sudha Sinha ◽  
Tim Eden ◽  
Ronald D. Barr

2020 ◽  
Vol 10 (3) ◽  
pp. 276-286
Author(s):  
Raymond Javan Chan ◽  
Laisa Teleni ◽  
Suzanne McDonald ◽  
Jaimon Kelly ◽  
Jane Mahony ◽  
...  

ObjectivesTo examine the effects of nurse-led interventions on the health-related quality of life, symptom burden and self-management/behavioural outcomes in women with breast cancer.MethodsCochrane Controlled Register of Trials (CENTRAL), Cumulative Index to Nursing and Allied Health Literature (CINAHL), Medline and Embase databases were searched (January 1999 to May 2019) to identify randomised controlled trials (RCTs) and controlled before-and-after studies of interventions delivered by nurses with oncology experience for women with breast cancer. Risk of bias was evaluated using the revised Cochrane risk-of-bias tool for randomised trials. Intervention effects were synthesised by cancer trajectory using The Omaha System Intervention Classification Scheme.ResultsThirty-one RCTs (4651 participants) were included. All studies were at risk of bias mainly due to inherent limitations such as lack of blinding and self-report data. Most studies (71%; n=22) reported at least one superior intervention effect. There were no differences in all outcomes between those who receive nurse-led surveillance care versus those who received physical led or usual discharge care. Compared with control interventions, there were superior teaching, guidance and counselling (63%) and case management (100%) intervention effects on symptom burden during treatment and survivorship. Effects of these interventions on health-related quality of life and symptom self-management/behavioural outcomes were inconsistent.DiscussionThere is consistent evidence from RCTs that nurse-led surveillance interventions are as safe and effective as physician-led care and strong evidence that nurse-led teaching, guidance and counselling and case management interventions are effective for symptom management. Future studies should ensure the incorporation of health-related quality of life and self-management/behavioural outcomes and consider well-designed attentional placebo controls to blind participants for self-report outcomes.Protocol registrationThe International Prospective Register of Systematic Reviews (PROSPERO): CRD42020134914).


Author(s):  
Linda Henry ◽  
Sharon Hunt ◽  
Sari D. Holmes ◽  
Lisa M. Martin ◽  
Niv Ad

Objective Atrial fibrillation (AF) management suggests that women do not tolerate medication rhythm control strategies as well as men do; however, AF percutaneous catheter ablation has been found to be favorable. The study purpose was to compare the sex-based outcomes for patients who undergo the Cox-Maze procedure for AF. Methods Data were collected through our AF surgical ablation registry. Rhythm was verified by electrocardiogram and 24-hour holter at 6 and 12 months. General health-related quality of life (Short-Form 12) and specific AF symptom burden (Atrial Fibrillation Symptom Checklist: Frequency and Severity, version 3) were obtained at baseline and 12 months. Results Since 2005, a total of 540 patients have undergone a Cox-Maze procedure (34% were women). The women presented with higher operative risk [additive European System for Cardiac Operative Risk Evaluation (EuroSCORE), 6.71 ± 2.61 vs 5.25 ± 2.80, t = 5.85, P < 0.001], higher rates of congestive heart failure (49% vs 32%, P < 0.001), and more concomitant mitral valve procedures (32% vs 19%, P = 0.001). Perioperative outcomes were similar. Return to sinus rhythm off antiarrhythmics were not different at 6 and 12 months (78% vs 75%, P = 0.53, and 81% vs 80%, P = 1.00, respectively). Cumulative 2-year survival (93.9% for the men and 89.3% for the women) was not different for all-cause mortality (hazard ratio, 1.47; confidence interval, 0.68–3.21; P = 0.33) and cardiac-related mortality [women: 10/14 (71%) vs men 7/11 (64%), P = 1.00]. Health-related quality of life showed significant improvement; AF symptoms significantly decreased across the sexes. Conclusions Outcomes after the Cox-Maze procedure are similar across sex. Atrial fibrillation surgical ablation should be considered a treatment option for women—it is safe and effective, improves general health-related quality of life, and reduces AF symptom burden.


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