Ho Margaret Kay, Hsue Crystal Cheuk Yiu, Lai Cheng Heng Nicholas, Chan Kwun Ting, Cheng Cheuk Nam, Chow Chun Fung, Lui Ka Ho, Rashed Shireen, Wong Elaine, Yu Wai Yan, Cheung Vanessa H M, Siu Steven W K, Ho Mei-Ling, Yuen Kwok-Keung, Chang Amy Tien Yee
Li Ka Shing Faculty of Medicine, University of Hong Kong, Hong Kong, China.
Department of Clinical Oncology, University of Hong Kong, Hong Kong, China.
Ann Palliat Med. 2020 Nov;9(6):4522-4533. doi: 10.21037/apm.2019.10.06. Epub 2020 Jan 1.
Palliative care aims to improve the quality of life for patients and their families, by helping them to cope with problems associated with illness. It targets four aspects of health: physical, psychological, social, and spiritual. Most of the current literature on palliative care is limited to the perspectives of health professionals. This study aims to investigate the views of outpatients receiving palliative care at the Hong Kong Queen Mary Hospital Hospice Centre (HKQMHHC), which offers palliative care services to cancer patients.
This observational cross-sectional study was performed with the completion of a single paper- based original questionnaire over 18 afternoon clinic sessions on Thursdays and Fridays from December 2017 to February 2018 at the HKQMHHC. The questionnaire was designed to examine patients' perspectives; in particular, the Edmonton Symptom Assessment Scale (ESAS) was used to assess their symptoms. Descriptive and univariate analyses were performed.
One hundred patients attending HKQMHHC were included in the study. The study revealed that all the mean scores for aspects of care offered at the centre were above 8, on a scale of 0-10 with 0 being extremely inadequate and 10 being extremely adequate. Each respondent was able to identify an average of 1.82 of the 4 aspects of palliative care. Eighty-seven percent of respondents perceived the physical aspect of this care to be of the highest priority. A negative correlation (P<0.05) was found between the extent of symptoms experienced by the patient and their satisfaction towards the services offered.
Patients generally held very positive attitudes, reflecting that the services sufficiently met their needs. However, owing to their rather limited knowledge, this may have restricted their perspectives to a largely superficial level, as many discerned palliative care to be simply targeting physical health with medical consultations. Considering the implications of the results, the addition of accessibility and education components to Hong Kong's current system of palliative care is crucial in the betterment of such services for patients. There should also be increased local coverage of palliative care services to facilitate convenience of access. With reference to the World Health Organisation (WHO) palliative care model, the inclusion of a continued spectrum of services, such as physical and mental health activities and psychosocial counselling, should be reinforced throughout the progression of disease so as to better help patients to cope with illness. The discovery of the relationship between extent of symptoms experienced and patients' satisfaction towards services provided is a new direction for further study.
姑息治疗旨在通过帮助患者及其家人应对与疾病相关的问题，提高他们的生活质量。它关注健康的四个方面：身体、心理、社会和精神。目前关于姑息治疗的大多数文献都局限于卫生专业人员的视角。本研究旨在调查在香港玛丽医院临终关怀中心（HKQMHHC）接受姑息治疗的门诊患者的观点，该中心为癌症患者提供姑息治疗服务。
本观察性横断面研究于2017年12月至2018年2月的周四和周五下午，在HKQMHHC通过完成一份基于纸张的原始问卷，共进行了18次门诊时段的调查。该问卷旨在考察患者的观点；特别是，使用埃德蒙顿症状评估量表（ESAS）来评估他们的症状。进行了描述性和单变量分析。
100名到HKQMHHC就诊的患者被纳入研究。研究表明，该中心提供的护理各方面的平均得分均高于8分（满分0 - 10分，0分表示极其不足，10分表示极其充足）。每位受访者平均能够识别出姑息治疗4个方面中的1.82个方面。87%的受访者认为这种护理的身体方面是最优先的。患者经历的症状程度与他们对所提供服务的满意度之间存在负相关（P<0.05）。
患者总体上持有非常积极的态度，这表明服务充分满足了他们的需求。然而，由于他们的知识相当有限，这可能将他们的观点限制在很大程度上的表面层面，因为许多人认为姑息治疗只是通过医疗咨询针对身体健康。考虑到结果的影响，在香港当前的姑息治疗体系中增加可及性和教育内容对于改善此类患者服务至关重要。还应增加姑息治疗服务在当地的覆盖范围，以方便患者获得。参照世界卫生组织（WHO）的姑息治疗模式，在疾病的整个进展过程中，应加强纳入一系列持续的服务，如身心健康活动和心理社会咨询，以便更好地帮助患者应对疾病。发现患者经历的症状程度与对所提供服务的满意度之间的关系是进一步研究的一个新方向。
