Department of Paraclinical Sciences, Faculty of Medicine and Health Sciences, Universiti Malaysia Sarawak (UNIMAS), Kota Samarahan, Malaysia.
Society for Cancer Advocacy and Awareness Kuching, Kuching, Sarawak, Malaysia.
PLoS One. 2024 Jul 26;19(7):e0296954. doi: 10.1371/journal.pone.0296954. eCollection 2024.
The state of Sarawak on the island of Borneo in East Malaysia, in working towards developing and strengthening cancer services through a holistic patient-centred approach, must focus on the comprehensive needs of cancer patients by taking into account the psycho-social, cultural and spiritual aspects of Sarawak's multi-ethnic, multi-cultural population.
A 42-item survey questionnaire was developed and validated with a total of 443 patients. The perceived importance of information provided and level of patient satisfaction were assessed with a 5-point Likert scale in 10 domains (Diagnosis, Surgery, Radiotherapy, Systemic therapy, Clinical trials, Pain management, Treatment monitoring, Psychosocial support, Sexual care and fertility issues, and Financial support). A Spearman's rank correlation test was applied to determine the correlation between response in both item and domain categories for perceived importance and satisfaction.
Overall, patients were more satisfied with information related to cancer diagnosis, treatment and surgery but less satisfied with information pertaining to sexual aspects of care and family planning, psycho-social support and financial support. The majority of patients were satisfied with the level of treatment-related information received but preferred the information to be delivered in more easily comprehendible formats. Sexual aspects of care and family planning, psychosocial support and treatment monitoring post-discharge were perceived as important but seldom addressed by health care professionals due to lack of professional counsellors, social workers and clinical nurse specialists. Many patients face financial toxicity following a cancer diagnosis, particularly when diagnosed with advanced cancer requiring complex multi-modality treatment.
Cancer patients in Sarawak have various unmet information needs. Written information and educational videos in local indigenous languages may be more suitable for Sarawak's multi-ethnic population. Sexual aspects of care and family planning are challenging but essential topics to discuss, in particular due to the high prevalence of breast and cervical cancer amongst young women of reproductive age in Sarawak. Financial assessment and information on support services offered by government and non-government organisations should be provided to eligible patients. A holistic needs assessment of each patient at time of diagnosis and support through their cancer journey requires a multi-disciplinary team of medical, nursing and allied health professionals including clinical nurse specialists, pharmacists, counsellors, physiotherapists, occupational therapists, speech and language therapists, dieticians and social workers.
位于东马来西亚婆罗洲岛的沙捞越州，为了通过整体以患者为中心的方法来发展和加强癌症服务，必须考虑到沙捞越多元种族、多元文化人群的心理-社会、文化和精神方面，从而满足癌症患者的综合需求。
开发并验证了一个 42 项的调查问卷，共调查了 443 名患者。通过 5 分制李克特量表在 10 个领域（诊断、手术、放疗、系统治疗、临床试验、疼痛管理、治疗监测、心理社会支持、性护理和生育问题、财务支持）评估患者对提供信息的重要性感知和满意度。采用 Spearman 秩相关检验来确定对项目和领域类别的感知重要性和满意度的反应之间的相关性。
总体而言，患者对癌症诊断、治疗和手术相关信息的满意度更高，但对性护理和计划生育、心理社会支持和财务支持相关信息的满意度较低。大多数患者对治疗相关信息的获取水平感到满意，但更希望以更容易理解的格式提供信息。性护理和计划生育、心理社会支持和出院后治疗监测被认为是重要的，但由于缺乏专业顾问、社会工作者和临床护士专家，医护人员很少关注这些方面。许多患者在癌症诊断后会面临财务毒性，尤其是在被诊断为患有需要复杂多模式治疗的晚期癌症时。
沙捞越的癌症患者有各种未满足的信息需求。用当地土著语言编写的书面信息和教育视频可能更适合沙捞越的多元种族人群。性护理和计划生育是具有挑战性但又必不可少的讨论话题，特别是因为在沙捞越，年轻的育龄期妇女乳腺癌和宫颈癌的发病率很高。应向符合条件的患者提供政府和非政府组织提供的财务评估和支持服务信息。在诊断时对每位患者进行全面需求评估，并在其癌症治疗过程中提供支持，需要由医疗、护理和联合健康专业人员组成的多学科团队，包括临床护士专家、药剂师、顾问、物理治疗师、职业治疗师、言语和语言治疗师、营养师和社会工作者。
