Cross-cultural Evaluation of the Quality of Dying and Death Questionnaire with Caregivers of Advanced Cancer Patients in Kenya

Author(s):  
Lesley Chalklin
2017 ◽  
Vol 35 (31_suppl) ◽  
pp. 78-78
Author(s):  
Jideuma Ikenna Egwim ◽  
Smita Palejwala

78 Background: Advanced cancers remain a major cause of mortality in Nigeria. Participation in clinical trials (PCTs) and palliative end-of-life care (PEOLC) are two approaches to incurable cancer management in the developed nations but these have been less adopted in Nigeria. This study set out to determine patients’ preferred approach between PCTs and PEOLC for management of advanced cancers in Nigeria. Methods: A survey of 120 advanced cancer patients was conducted using a questionnaire with 5-point Likert scale, variables of interest included demographic information, knowledge and perception about PCTs and PEOLC. Results: Majority of the patients (84%) agree PCTs is an option in management of incurable cancer but just about half accept it is beneficial and will improve their QOL, as against PEOLC, where all the patients considered it an option and deem it beneficial; with 99% and 98% respectively agreeing it will enhance their QOL and that of family members. About 56% believe PCTs carries a risk of burdensome interventions and 52% increased hospital stay at EOL while 47% are of the opinion it will increase cost of care with 45% stating it will lead to increased ICU death. Sixty-nine percent (69%) and 63% respectively agree PCTs increases the suffering of patients and family members while 43% believe it carries a net negative risk-benefit profile, nevertheless, 83% are ready to overlook the risk of PCTs for possible therapeutic benefit while for 87%, the primary motivation for PCTs is personal cure. Majority (58%) believe PCTs does not improve quality of dying/death contrary to PEOLC where 88% believe it would improve the quality of dying/death. Overall, by direct comparison 78%:13% prefer PEOL to PCTs; {X2(p-value), 40.26(0.001)}. Conclusions: Both modalities are acceptable to advanced cancer patients but the study reveals several ethical issues with PCTs including risk of burdensome interventions, suffering of patients, therapeutic misconception and misperception of curability. A major determinant to accepting PEOL is its positive impact on patients’ QOL. Concerted efforts are needed to significantly enhance access of PEOLC to cancer patients.


2021 ◽  
Vol Publish Ahead of Print ◽  
Author(s):  
Daniel Gutiérrez-Sánchez ◽  
Rafael Gómez-García ◽  
María Luisa Martín Roselló ◽  
Antonio I. Cuesta-Vargas

2013 ◽  
Vol 14 (1) ◽  
pp. 139-146 ◽  
Author(s):  
Gemma Cramarossa ◽  
Liang Zeng ◽  
Liying Zhang ◽  
Ling-Ming Tseng ◽  
Ming-Feng Hou ◽  
...  

2015 ◽  
Vol 9 ◽  
Author(s):  
Donemico Fuoco ◽  
Jonathan di Tomasso ◽  
Caroline Boulos ◽  
Robert D Kilgour ◽  
Jose A Morais ◽  
...  

2021 ◽  
Author(s):  
Johanna Sommer ◽  
Christopher Chung ◽  
Dagmar M. Haller ◽  
Sophie Pautex

Abstract Background: Patients suffering from advanced cancer often loose contact with their primary care physician (PCP) during oncologic treatment and palliative care is introduced very late.The aim of this pilot study was to test the feasibility and procedures for a randomized trial of an intervention to teach PCPs a palliative care approach and communication skills to improve advanced cancer patients’ quality of life. Methods: Observational pilot study in 5 steps. 1) Recruitment of PCPs. 2) Intervention: training on palliative care competencies and communication skills addressing end-of-life issues.3) Recruitment of advanced cancer patients by PCPs. 4) Patients follow-up by PCPs, and assessment of their quality of life by a research assistant 5) Feedback from PCPs using a semi-structured focus group and three individual interviews with qualitative deductive theme analysis.Results: 8 PCPs were trained. PCPs failed to recruit patients for fear of imposing additional loads on their patients. PCPs changed their approach of advanced cancer patients. They became more conscious of their role and responsibility during oncologic treatments and felt empowered to take a more active role picking up patient’s cues and addressing advance directives. They developed interprofessional collaborations for advance care planning. Overall, they discovered the role to help patients to make decisions for a better end-of-life.Conclusions: PCPs failed to recruit advanced cancer patients, but reported a change in paradigm about palliative care. They moved from a focus on helping patients to die better, to a new role helping patients to define the conditions for a better end-of-life.Trial registration : The ethics committee of the canton of Geneva approved the study (2018-00077 Pilot Study) in accordance with the Declaration of Helsinki


2014 ◽  
Vol 24 (4) ◽  
pp. 817-828 ◽  
Author(s):  
Geok Ling Lee ◽  
Mandy Yen Ling Ow ◽  
Ramaswamy Akhileswaran ◽  
Grace Su Yin Pang ◽  
Gilbert Kam Tong Fan ◽  
...  

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