scholarly journals Symptom and Illness Experience for English and Spanish-Speaking Children with Advanced Cancer: Child and Parent Perspective

Children ◽  
2021 ◽  
Vol 8 (8) ◽  
pp. 657
Author(s):  
Donna S. Zhukovsky ◽  
Cathy L. Rozmus ◽  
Rhonda Robert ◽  
Eduardo Bruera ◽  
Robert J. Wells ◽  
...  

Understanding the symptom and illness experience of children with advanced cancer facilitates quality care; yet, obtaining this understanding is complicated by the child’s developmental level and physical and psychological health factors that affect communication. The purpose of this study was to describe the symptom and illness experience of English- and Spanish-speaking children with advanced cancer as described by the child and parent. We conducted hermeneutic phenomenological, descriptive, and interpretive interviews with eligible children and parents. The interdisciplinary research team analyzed transcripts hermeneutically until consensus on theme labels was reached. Four themes and associated subthemes were identified from the interviews of the 10 child–parent dyads: 1. symptoms disrupt life (path to diagnosis, life is disrupted), 2. isolation (lack of understanding, family separations/relationships), 3. protection, and 4. death is not for children. Children and parents readily described the impact symptoms and cancer treatment had on their lives and relationships. These findings underscore the salient aspects of daily life disrupted by cancer. With a deeper understanding of symptom burden and its interference, relationship and communication implications, and anticipatory grief, the treating team may better optimize care for children and their families living with advanced cancer.

2017 ◽  
Vol 35 (31_suppl) ◽  
pp. 124-124
Author(s):  
Diane Portman ◽  
Sarah Thirlwell ◽  
Kristine A. Donovan

124 Background: Appetite and weight loss are common in patients with advanced cancer and specialized cachexia clinics have been established to address these symptoms. Given the association between anorexia/cachexia and other adverse symptoms, these patients may also benefit from specialty level palliative care (PC). However, referral to outpatient specialty level PC is often delayed or does not occur. We sought to examine the prevalence of other factors associated with appetite and weight loss in patients with advanced cancer and the impact of a specialized cachexia clinic on identification and treatment of other PC needs. Methods: The records of patients referred by their Oncologist to the cachexia clinic of a cancer center from August 2016 to June 2017 were reviewed retrospectively. Subjects who had been referred to PC by their Oncologist were excluded. Patients had been assessed for symptom burden using the Edmonton Symptom Assessment Scale (ESAS-r). Patients identified with PC needs had been referred to the PC clinic for follow-up within 30 days after cachexia clinic consultation. Results: Thirty subjects were evaluated in the cachexia clinic (average age 68 years; 63% female). The predominant diagnosis was lung cancer (70%). An average of 6 symptoms per patient were in the moderate to severe range on ESAS, excluding appetite. Depression, fatigue and pain were most common. The average cachexia clinic total ESAS score was 51.61. Only 17% of patients had completed advance directives. Ninety-three % of patients were referred to PC and 68% were seen. The average number of PC visits was 2.79. Within the PC clinic, advance directive completion increased to 37%, goals of care discussion occurred with 50% and 17% received hospice referrals. At the most recent follow-up in the PC clinic, the average total ESAS score had decreased by 11.44 (22%) and all ESAS item scores were improved on average. Conclusions: The cachexia clinic proved a useful means to identify other PC needs and achieve effective PC referrals. We suggest this is proof of concept that specialty clinics can be a meaningful way to achieve an earlier entry point to comprehensive PC in patients who were not previously referred by their Oncologists.


Author(s):  
Paolo Cotogni ◽  
Andrea Saini ◽  
Anna De Luca

Traditionally, palliative care (PC) systems focused on the needs of advanced cancer patients. But, most patients needing PC have end-stage organ diseases. Similarly, PC models focused on the needs of patients in hospice or at home; however, in most cases PC is provided in acute hospitals. Indeed, the symptom burden that these patients experience in the last year of life frequently forces them to seek care in Emergency Department. The majority of them are admitted to the hospital and many die. This issue poses important concerns. Despite the efforts of attending healthcare professionals, inhospital patients do not receive optimal care near the end-of-life. Also, evidence is emerging that delay in identifying patients needing PC have a detrimental impact on their quality of life (QoL). Therefore, there is an urgent need to early and properly identify these patients among those hospitalized. Several trials reported the efficacy of PC in improving the QoL in these patients. Each hospital should ensure that a multidisciplinary PC team is available to support attending physicians to achieve the best QoL for both PC patients and their families. This review discusses the role and the impact of inhospital PC in patients with end-stage disease or advanced cancer.


2010 ◽  
Vol 8 (1) ◽  
pp. 83-93 ◽  
Author(s):  
Genevieve N. Thompson ◽  
Harvey M. Chochinov

AbstractObjective:To deliver quality care at the end of life, understanding the impact of various changes and life transitions that occur in older age is essential. This review seeks to uncover potential sources of distress in an elder's physical, psychological, social, and spiritual well-being to shed light on the unique challenges and needs facing this age group.Methods:Papers relating to older adults (aged 65 years and older or a mean age of 65 years and older) with advanced/terminal cancer receiving palliative, hospice, or end-of-life care published after 1998 were reviewed.Results:Older adults with advanced cancer have unique needs related to changes in their physical, psychological, social, and spirituals well-being. Changes in each of these domains offer not only the risk of causing distress but also the potential for growth and development during the final stages of advanced cancer.Significance of results:Being aware of the various changes that occur with aging will help health care professionals tailor interventions to promote dignity-conserving care and greatly reduce the potential for suffering at the end of life.


2020 ◽  
Vol 91 (8) ◽  
pp. 651-661
Author(s):  
Joshua T. Davis ◽  
Hilary A. Uyhelji

INTRODUCTION: Although the impact of microorganisms on their hosts has been investigated for decades, recent technological advances have permitted high-throughput studies of the collective microbial genomes colonizing a host or habitat, also known as the microbiome. This literature review presents an overview of microbiome research, with an emphasis on topics that have the potential for future applications to aviation safety. In humans, research is beginning to suggest relationships of the microbiome with physical disorders, including type 1 and type 2 diabetes mellitus, cardiovascular disease, and respiratory disease. The microbiome also has been associated with psychological health, including depression, anxiety, and the social complications that arise in autism spectrum disorders. Pharmaceuticals can alter microbiome diversity, and may lead to unintended consequences both short and long-term. As research strengthens understanding of the connections between the microbiota and human health, several potential applications for aerospace medicine and aviation safety emerge. For example, information derived from tests of the microbiota has potential future relevance for medical certification of pilots, accident investigation, and evaluation of fitness for duty in aerospace operations. Moreover, air travel may impact the microbiome of passengers and crew, including potential impacts on the spread of disease nationally and internationally. Construction, maintenance, and cleaning regimens that consider the potential for microbial colonization in airports and cabin environments may promote the health of travelers. Altogether, the mounting knowledge of microbiome effects on health presents several opportunities for future research into how and whether microbiome-based insights could be used to improve aviation safety.Davis JT, Uyhelji HA. Aviation and the microbiome. Aerosp Med Hum Perform. 2020; 91(8):651–661.


2020 ◽  
Author(s):  
Khanh Ngoc Cong Duong ◽  
Tien Nguyen Le Bao ◽  
Phuong Thi Lan Nguyen ◽  
Thanh Vo Van ◽  
Toi Phung Lam ◽  
...  

BACKGROUND The first nationwide lockdown due to the COVID-19 pandemic was implemented in Vietnam from April 1 to 15, 2020. Nevertheless, there has been limited information on the impact of COVID-19 on the psychological health of the public. OBJECTIVE This study aimed to estimate the prevalence of psychological issues and identify the factors associated with the psychological impact of COVID-19 during the first nationwide lockdown among the general population in Vietnam. METHODS We employed a cross-sectional study design with convenience sampling. A self-administered, online survey was used to collect data and assess psychological distress, depression, anxiety, and stress of participants from April 10 to 15, 2020. The Impact of Event Scale-Revised (IES-R) and the Depression, Anxiety, and Stress Scale-21 (DASS-21) were utilized to assess psychological distress, depression, anxiety, and stress of participants during social distancing due to COVID-19. Associations across factors were explored using regression analysis. RESULTS A total of 1385 respondents completed the survey. Of this, 35.9% (n=497) experienced psychological distress, as well as depression (n=325, 23.5%), anxiety (n=195, 14.1%), and stress (n=309, 22.3%). Respondents who evaluated their physical health as average had a higher IES-R score (beta coefficient [B]=9.16, 95% CI 6.43 to 11.89), as well as higher depression (B=5.85, 95% CI 4.49 to 7.21), anxiety (B=3.64, 95% CI 2.64 to 4.63), and stress (B=5.19, 95% CI 3.83 to 6.56) scores for DASS-21 than those who rated their health as good or very good. Those who self-reported their health as bad or very bad experienced more severe depression (B=9.57, 95% CI 4.54 to 14.59), anxiety (B=7.24, 95% CI 3.55 to 10.9), and stress (B=10.60, 95% CI 5.56 to 15.65). Unemployment was more likely to be associated with depression (B=3.34, 95% CI 1.68 to 5.01) and stress (B=2.34, 95% CI 0.84 to 3.85). Regarding worries about COVID-19, more than half (n=755, 54.5%) expressed concern for their children aged <18 years, which increased their IES-R score (B=7.81, 95% CI 4.98 to 10.64) and DASS-21 stress score (B=1.75, 95% CI 0.27 to 3.24). The majority of respondents (n=1335, 96.4%) were confident about their doctor’s expertise in terms of COVID-19 diagnosis and treatment, which was positively associated with less distress caused by the outbreak (B=–7.84, 95% CI –14.58 to –1.11). CONCLUSIONS The findings highlight the effect of COVID-19 on mental health during the nationwide lockdown among the general population in Vietnam. The study provides useful evidence for policy decision makers to develop and implement interventions to mitigate these impacts. CLINICALTRIAL


Author(s):  
Albert Tuca Rodríguez ◽  
Miguel Núñez Viejo ◽  
Pablo Maradey ◽  
Jaume Canal-Sotelo ◽  
Plácido Guardia Mancilla ◽  
...  

Abstract Purpose The main aim of the study was to assess the impact of individualized management of breakthrough cancer pain (BTcP) on quality of life (QoL) of patients with advanced cancer in clinical practice. Methods A prospective, observational, multicenter study was conducted in patients with advanced cancer that were assisted by palliative care units. QoL was assessed with the EORTC QLQ-C30 questionnaire at baseline (V0) and after 28 days (V28) of individualized BTcP therapy. Data on background pain, BTcP, comorbidities, and frailty were also recorded. Results Ninety-three patients completed the study. Intensity, duration, and number of BTcP episodes were reduced (p < 0.001) at V28 with individualized therapy. Transmucosal fentanyl was used in 93.8% of patients, mainly by sublingual route. Fentanyl titration was initiated at low doses (78.3% of patients received doses of 67 μg, 100 μg, or 133 μg) according to physician evaluation. At V28, mean perception of global health status had increased from 31.1 to 53.1 (p < 0.001). All scales of EORTC QLQ-C30 significantly improved (p < 0.001) except physical functioning, diarrhea, and financial difficulties. Pain scale improved from 73.6 ± 22.6 to 35.7 ± 22.3 (p < 0.001). Moreover, 85.9% of patients reported pain improvement. Probability of no ≥ 25% improvement in QoL was significantly higher in patients ≥ 65 years old (OR 1.39; 95% CI 1.001–1.079) and patients hospitalized at baseline (OR 4.126; 95% CI 1.227–13.873). Conclusion Individualized BTcP therapy improved QoL of patients with advanced cancer. Transmucosal fentanyl at low doses was the most used drug. Trial registration This study was registered at ClinicalTrials.gov database (NCT02840500) on July 19, 2016.


2021 ◽  
Vol 10 (11) ◽  
pp. 2354
Author(s):  
Francesca J. New ◽  
Sally J. Deverill ◽  
Bhaskar K. Somani

Background: Malignant ureteric obstruction occurs in a variety of cancers and has been typically associated with a poor prognosis. Percutaneous nephrostomy (PCN) can potentially help increase patient longevity by establishing urinary drainage and treating renal failure. Our aim was to look at the outcomes of PCN in patients with advanced cancer and the impact on the patients’ lifespan and quality of life. Materials and Methods: A literature review was carried out for articles from 2000 to 2020 on PCN in patients with advanced malignancies, using MEDLINE, EMBASE, Scopus, CINAHL, Cochrane Library, clinicaltrials.gov, and Google Scholar. All English-language articles reporting on a minimum of 20 patients who underwent PCN for malignancy-associated ureteric obstruction were included. Results: A total of 21 articles (1674 patients) met the inclusion criteria with a mean of 60.2 years (range: 21–102 years). PCN was performed for ureteric obstruction secondary to urological malignancies (n = −633, 37.8%), gynaecological malignancies (n = 437, 26.1%), colorectal and GI malignancies (n = 216, 12.9%), and other specified malignancies (n = 205, 12.2%). The reported mean survival times varied from 2 to 8.5 months post PCN insertion, with an average survival time of 5.6 months, which depended on the cancer type, stage, and previous treatment. Conclusions: Patients with advanced malignancies who need PCN tend to have a survival rate under 12 months and spend a large proportion of this time in the hospital. Although the advent of newer chemotherapy and immunotherapy options has changed the landscape of managing advanced cancer, decisions on nephrostomy must be balanced with their survival and quality of life, which must be discussed with the patient.


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