scholarly journals Development and Assessment of a Low Literacy, Pictographic Nausea Action Plan

Blood ◽  
2021 ◽  
Vol 138 (Supplement 1) ◽  
pp. 2978-2978
Author(s):  
Patrick Reeves ◽  
Scott Penney ◽  
Kristen Aileen Romanelli ◽  
Donald Rees ◽  
Philip Rogers ◽  
...  

Abstract Objective Chemotherapy-induced nausea and vomiting (CINV) is characterized by disabling nausea and emesis that can recur throughout the treatment of cancer and affects approximately 59% of pediatric and young adult patients. CINV can be associated with significant clinical morbidity, frequent hospital admissions, negative effects on health care related quality-of-life and can exhibit downstream effects such as weight loss that can worsen overall outcomes. Despite the vast number and potential combinations of pharmacotherapies and lifestyle modifications available to manage CINV in children, there are currently no clinical action tools offered to manage this condition better at home. We aimed to develop and assess an evidence-based, personalized pictogram-based nausea action plan (NAP) to aid providers, parents, and patients in the management of CINV. Methods The USNAP (Figure 1) facilitates the management of CINV by using a health literacy-informed approach to provide instructions for pharmacotherapies and lifestyle modifications. This study included Part 1 (Pictogram Validation) and Part 2 (Assessment). For Part 1, Pictogram transparency, translucency, and recall were assessed by parent survey with transparency ≥85%, mean translucency score ≥5, recall ≥85% required for validation. For Part 2, the USNAP was assessed by parents, clinical librarians, and clinicians. Patient/caregiver perceptions (n=27) were assessed using the Consumer Information Rating Form (17 questions) to gauge comprehension, design quality and usefulness. Readability was assessed by 5 formulas and a Readability Consensus Score was calculated. Clinical Librarians (n=2) used the Patient Education Materials Assessment Tool to measure the understandability (19 questions) and actionability (7 questions) of the plan and audiovisual educational content (>80% acceptable.) Suitability was assessed by clinicians (n=16) using Doaks' Suitability Assessment of Materials (superior≥70% rating). Results All 15 pictograms demonstrated appropriate transparency, translucency, and recall. Patient/caregiver perceptions reflected appropriate comprehension, design quality, and usefulness. The Readability Composite Score measured at a fourth-grade level. Clinical librarians reported acceptable understandability and actionability. Clinicians reported superior suitability. Conclusion The Uniformed Services Nausea Action Plan (USNAP) is the first clinical action tool designed to assist in managing CINV at home. Although recent clinical practice updates provide guidance on the therapeutic management of CINV in pediatric and young adult patients with cancer, these recommendations do not fully address the needs of the patient at home or adequately inform in instances of low health literacy. The USNAP seeks to mitigate this by making the clinical practice guidance useful to patients and caregivers at home. In addition, the USNAP is poised to identify other urgent clinical developments for patients with cancer that could masquerade as nausea and may serve as an early warning sign in these instances. The USNAP met all criteria for clinical implementation. The USNAP has potential to become an important tool in the care of patients with CINV, improving both quality-of-care and clinical outcomes. Future study of USNAP implementation for treating children with chronic CINV is needed. Figure 1 Figure 1. Disclosures No relevant conflicts of interest to declare.

2008 ◽  
Vol 94 (2) ◽  
pp. 154-159 ◽  
Author(s):  
Bèatrice Fervers ◽  
Magali Remy-Stockinger ◽  
Valèrie Mazeau-Woynar ◽  
Renèe Otter ◽  
Alessandro Liberati ◽  
...  

All European countries are facing common challenges for delivering appropriate, evidence-based care to patients with cancer. Despite tangible improvements in diagnosis and treatment, marked differences in cancer survival exist throughout Europe. The reliable translation of new research evidence into consistent patient-oriented strategies is a key endeavour to overcome inequalities in healthcare. Clinical-practice guidelines are important tools for improving quality of care by informing professionals and patients about the most appropriate clinical practice. Guideline programmes in different countries use similar strategies to achieve similar goals. This results in unnecessary duplication of effort and inefficient use of resources. While different initiatives at the international level have attempted to improve the quality of guidelines, less investment has been made to overcome existing fragmentation and duplication of effort in cancer guideline development and research. To provide added value to existing initiatives and foster equitable access to evidence-based cancer care in Europe, CoCanCPG will establish cooperation between cancer guideline programmes. CoCanCPG is an ERA-Net coordinated by the French National Cancer Institute with 17 partners from 11 countries. The CoCanCPG partners will achieve their goal through an ambitious, step-wise approach with a long-term perspective, involving: 1. implementing a common framework for sharing knowledge and skills; 2. developing shared activities for guideline development; 3. assembling a critical mass for pertinent research into guideline methods; 4. implementing an appropriate framework for cooperation. Successful development of joint activities involves learning how to adopt common quality standards and how to share responsibilities, while taking into account the cultural and organisational diversity of the participating organisations. Languages barriers and different organisational settings add a level of complexity to setting up transnational collaboration. Through its activities, CoCanCPG will make an important contribution towards better access to evidence-based cancer practices and thus contribute to reducing inequalities and improving care for patients with cancer across Europe.


2005 ◽  
Vol 3 (6) ◽  
pp. 772 ◽  

Cancer- and treatment-related anemia has received increasing attention, particularly because relationships between anemia and quality of life (QOL) or treatment outcomes are under investigation. This guideline recognizes the multiple etiologies of cancer- and treatment-related anemia, but specifically addresses the treatment of anemia caused by the myelosuppressive effects of chemotherapy and the anemia associated with chronic disease. It provides guidelines for the use of erythropoietic agents in patients with cancer who are receiving chemotherapy. For the most recent version of the guidelines, please visit NCCN.org


2020 ◽  
Vol 3 (2) ◽  
pp. 143-152
Author(s):  
Akbar U Saun ◽  
Erna Rochmawati

Background: Cancer patients choose to understand at home. Families have an important role in the care of clients specifically at home. Readiness is needed in order to provide optimal care and will be able to improve the quality of life of patients. This literature review aims to see how families are prepared to care for patients with cancer at home. Method: Writing this journal literature uses study literature originating from the database, namely EBSCO, PROQUEST, PubMed, and Google Scholar using the keywords Family Preparedness, Family Caregiver, Symptom Management, Palliative Care, family quality of life, Care Parenting. Using inclusion criteria that contain literature sources taken from 2009 to 2019, inclusion criteria, using English, conformity of approval keywords, linkages between the results of literature research and the discussion raised.Results: There are 4 themes found in this literature review, namely family care in patient care, instruments in measuring family readiness, self-affection for families who care for patients at home, and psycho-education in increasing family readiness to care for patients at home. Conclusion: Family readiness to treat patients at home needs to be considered. Nurses play an important role in providing education to the family in providing patient care at home so that the patient's welfare is fulfilled.


2017 ◽  
Vol 35 (6) ◽  
pp. 652-659 ◽  
Author(s):  
Olga Husson ◽  
Brad J. Zebrack ◽  
Rebecca Block ◽  
Leanne Embry ◽  
Christine Aguilar ◽  
...  

Purpose To examine changes in health-related quality of life (HRQoL) and its predictors during the first 2 years after initial cancer diagnosis in adolescent and young adult (AYA) patients with cancer. Patients and Methods A multicenter, longitudinal, prospective study was conducted among a diverse sample of AYA patients with cancer ages 15 to 39 years. One hundred seventy-six patients (75% response) completed a self-report measure of HRQoL (Short Form-36 [SF-36]) within the first 4 months after diagnosis and again 12 and 24 months later. Linear mixed models with random intercepts and slopes estimated changes in QoL. Results Recently diagnosed AYA patients with cancer had significantly worse physical component scale (PCS) scores (38.7 v 52.8; P < .001) and mental component scale (MCS) scores (42.9 v 48.9; P < .001) when compared with population norms. Significant improvements in PCS and MCS scores from baseline to 24-month follow-up were observed; however, these increases were largest during the first 12 months. At the 24-month follow-up, AYA patients still had significantly lower PCS scores (48.0 v 52.8; P < .001) and MCS scores (45.8 v 48.9; P = .002) when compared with population norms. Multivariable analyses revealed that improvements in PCS and MCS scores were primarily a function of being off-treatment and being involved in school or work. PCS but not MCS scores were worse for AYA patients diagnosed with cancers with poorer prognoses. Conclusion Although HRQoL improved over time, it was still compromised 24 months after primary diagnosis. Given relatively little observed improvement in HRQoL during the 12- to 24-month period after diagnosis, AYA patients may benefit from supportive care interventions administered during the second year after diagnosis.


Nutrients ◽  
2021 ◽  
Vol 13 (3) ◽  
pp. 761
Author(s):  
Delky Meza-Valderrama ◽  
Ester Marco ◽  
Vanesa Dávalos-Yerovi ◽  
Maria Dolors Muns ◽  
Marta Tejero-Sánchez ◽  
...  

The recent publication of the revised Consensus on definition and diagnosis of sarcopenia (EWGSOP2) and the Global Leadership Initiative on Malnutrition (GLIM) criteria changed the approach to research on sarcopenia and malnutrition. Whilst sarcopenia is a nutrition-related disease, malnutrition and cachexia are nutritional disorders sharing the common feature of low fat-free mass. However, they have differential characteristics and etiologies, as well as specific therapeutic approaches. Applying the current definitions in clinical practice is still a challenge for health professionals and the potential for misdiagnosis is high. This is of special concern in the subgroup of older people with cancer, in which sarcopenia, malnutrition, and cancer cachexia are highly prevalent and can overlap or occur separately. The purpose of this review is to provide an updated overview of the latest research and consensus definitions of sarcopenia, malnutrition, and cachexia and to discuss their implications for clinical practice in older patients with cancer. The overall aim is to improve the quality of nutritional care in light of the latest findings.


2013 ◽  
Vol 31 (17) ◽  
pp. 2136-2145 ◽  
Author(s):  
Ashley Wilder Smith ◽  
Keith M. Bellizzi ◽  
Theresa H.M. Keegan ◽  
Brad Zebrack ◽  
Vivien W. Chen ◽  
...  

Purpose Adolescents and young adults (AYAs) diagnosed with cancer face numerous physical, psychosocial, and practical challenges. This article describes the health-related quality of life (HRQOL) and associated demographic and health-related characteristics of this developmentally diverse population. Patients and Methods Data are from the Adolescent and Young Adult Health Outcomes and Patient Experience (AYA HOPE) study, a population-based cohort of 523 AYA patients with cancer, ages 15 to 39 years at diagnosis from 2007 to 2009. Comparisons are made by age group and with general and healthy populations. Multiple linear regression models evaluated effects of demographic, disease, health care, and symptom variables on multiple domains of HRQOL using the Pediatric Quality of Life Inventory (PedsQL) and the Short-Form Health Survey 12 (SF-12). Results Overall, respondents reported significantly worse HRQOL across both physical and mental health scales than did general and healthy populations. The greatest deficits were in limitations to physical and emotional roles, physical and social functioning, and fatigue. Teenaged patients (ages 15 to 17 years) reported worse physical and work/school functioning than patients 18 to 25 years old. Regression models showed that HRQOL was worse for those in treatment, with current/recent symptoms, or lacking health insurance at any time since diagnosis. In addition, sarcoma patients, Hispanic patients, and those with high school or lower education reported worse physical health. Unmarried patients reported worse mental health. Conclusion Results suggest that AYAs with cancer have major decrements in several physical and mental HRQOL domains. Vulnerable subgroups included Hispanic patients, those with less education, and those without health insurance. AYAs also experienced higher levels of fatigue that were influenced by current symptoms and treatment. Future research should explore ways to address poor functioning in this understudied group.


10.2196/17163 ◽  
2020 ◽  
Vol 12 (1) ◽  
pp. e17163
Author(s):  
Rei Kobayashi ◽  
Masato Ishizaki

Background Low health literacy is associated with factors such as not taking medication as prescribed as well as poor health status and increased hospitalization and mortality risk, and has been identified as a risk factor for decreased physical function in older individuals. Health literacy is becoming an increasingly important issue because of the increased number of people affected by cancer who must make complicated treatment decisions. Health literacy has been shown to be positively associated with quality of life (QOL), and social support has been identified as important for addressing health-related problems and reducing the relative risk of mortality in patients with cancer. However, few studies have examined the relationship between health literacy, social support, age, and QOL. Objective The aim of this study is to examine the effects of health literacy, social support, and age on the QOL of patients with cancer. Methods An anonymous, self-administered online questionnaire was conducted from March 28 to 30, 2017, in Japan on patients with lung, stomach, or colon cancer that were voluntarily registered with an internet survey company. The survey covered basic attributes, health literacy, social support, and QOL. The European Health Literacy Survey Questionnaire, a comprehensive measure of health literacy instrument, was used to measure health literacy; the Japanese version of the Social Support Scale was used to measure social support; and the Japanese version of the Functional Assessment of Cancer Therapy-General (7-item version) assessment tool was used to measure QOL. Results A total of 735 survey invitations were randomly sent to patients with lung, stomach, or colorectal cancer, and responses were obtained from 619 (82.2% response rate). Significant effects on the QOL in patients with lung, stomach, or colon cancer were observed for health literacy, social support, and age, and for the interactions of health literacy and social support and of social support and age. Health literacy, social support, and the interaction between these variables also showed a significant effect on the QOL in patients 50 years or older, but not on those younger than 50 years. Conclusions The results of this study revealed that higher health literacy, social support, and age were associated with the QOL in patients with cancer. In addition, the relationship with QOL was stronger for social support than for health literacy. These findings suggest the importance of health literacy and social support and indicate that social support has a greater effect on QOL than does health literacy, while the QOL in patients with cancer aged younger than 50 years was lower than that of those 50 years or older. Therefore, elucidating the needs of these patients and strengthening social support based on those needs may improve their QOL.


2020 ◽  
Author(s):  
Susan McMillan ◽  
Brent Small ◽  
Amy Houtrow ◽  
Cindy Tofthagen ◽  
William Haley ◽  
...  

2010 ◽  
Vol 28 (29) ◽  
pp. 4457-4464 ◽  
Author(s):  
Alexi A. Wright ◽  
Nancy L. Keating ◽  
Tracy A. Balboni ◽  
Ursula A. Matulonis ◽  
Susan D. Block ◽  
...  

Purpose To determine whether the place of death for patients with cancer is associated with patients' quality of life (QoL) at the end of life (EOL) and psychiatric disorders in bereaved caregivers. Patients and Methods Prospective, longitudinal, multisite study of patients with advanced cancer and their caregivers (n = 342 dyads). Patients were followed from enrollment to death, a median of 4.5 months later. Patients' QoL at the EOL was assessed by caregiver report within 2 weeks of death. Bereaved caregivers' mental health was assessed at baseline and 6 months after loss with the Structured Clinical Interview for Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, and the Prolonged Grief Disorder interview. Results In adjusted analyses, patients with cancer who died in an intensive care unit (ICU) or hospital experienced more physical and emotional distress and worse QoL at the EOL (all P ≤ .03), compared with patients who died at home with hospice. ICU deaths were associated with a heightened risk for posttraumatic stress disorder, compared with home hospice deaths (21.1% [four of 19] v 4.4% [six of 137]; adjusted odds ratio [AOR], 5.00; 95% CI, 1.26 to 19.91; P = .02), after adjustment for caregivers' preexisting psychiatric illnesses. Similarly, hospital deaths were associated with a heightened risk for prolonged grief disorder (21.6% [eight of 37] v 5.2% [four of 77], AOR, 8.83; 95% CI, 1.51 to 51.77; P = .02), compared with home hospice deaths. Conclusion Patients with cancer who die in a hospital or ICU have worse QoL compared with those who die at home, and their bereaved caregivers are at increased risk for developing psychiatric illness. Interventions aimed at decreasing terminal hospitalizations or increasing hospice utilization may enhance patients' QoL at the EOL and minimize bereavement-related distress.


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