The Daffodil Centre a Joint Venture with Cancer Council New South Wales, The University of Sydney, Sydney, Australia.
Centre for Medical Psychology and Evidence-Based Decision-Making (CeMPED), School of Psychology, The University of Sydney, Sydney, NSW, Australia.
Psychooncology. 2021 Oct;30(10):1745-1755. doi: 10.1002/pon.5738. Epub 2021 Jun 2.
As many men diagnosed with prostate cancer (PC) are now living well beyond diagnosis and treatment, these survival gains necessitate improved understanding of long-term survivorship experiences. This is the first qualitative study that aimed to provide insights into PC survivors' adjustment to diagnosis and any persisting or emerging cancer/treatment-related issues over 15+ years.
Semi-structured interviews were conducted with 37 men purposively sampled from the 15-year follow-up phase of a population-wide cohort study, the New South Wales Prostate Cancer Care and Outcomes Study (PCOS). Interview data were transcribed and thematically analysed applying a framework methodology.
The majority of participating men (88.6%) had been diagnosed with localised disease and were treated with radical prostatectomy as primary treatment (54.1%). Four main interconnecting themes relating to men's long-term survivorship experience with PC were identified: (1) Survivorship reflections, (2) interactions with the healthcare system, (3) personal and social relationships and (4) dominant coping strategies. Many men reported gaps along the continuum of care and a feeling of abandonment across their long-term survivorship, encompassed by a perceived lack of psychosocial and informational support for persisting treatment side-effects, especially sexual dysfunction. Receiving adequate survivorship care and trusting patient-clinician relationships appeared to be associated with greater resilience and positivity in the men's acceptance of cancer-related long-term challenges and personal limitations.
Long-term PC survivors continue to experience lasting treatment impacts, with many men reporting unmet needs and a lack of continuity of multidisciplinary care. Implementation of coordinated and tailored survivorship care and shared care pathways with multidisciplinary practitioners will facilitate men's improved engagement and timely access to supportive care interventions, helping to avoid the 'survivorship abyss'.
由于许多被诊断患有前列腺癌 (PC) 的男性现在的生存时间已经远远超过了诊断和治疗期，因此需要更好地了解长期生存者的经历。这是第一项旨在深入了解 PC 幸存者在诊断后适应情况以及 15 年以上持续存在或新出现的癌症/治疗相关问题的定性研究。
对来自全人群队列研究——新南威尔士州前列腺癌护理和结局研究 (PCOS) 15 年随访阶段的 37 名男性进行了半结构化访谈。对访谈数据进行了转录，并应用框架方法进行了主题分析。
大多数参与研究的男性（88.6%）被诊断为局限性疾病，且作为主要治疗方法接受了根治性前列腺切除术（54.1%）。确定了与男性 PC 长期生存经历相关的四个主要相互关联的主题：（1）生存反思；（2）与医疗保健系统的相互作用；（3）个人和社会关系；（4）主要应对策略。许多男性报告称在整个治疗过程中存在差距，并在长期生存期间感到被抛弃，这与持续治疗副作用（尤其是性功能障碍）缺乏心理社会和信息支持有关。接受足够的生存护理和信任医患关系似乎与男性对癌症相关长期挑战和个人局限性的接受度更高的韧性和积极性有关。
长期 PC 幸存者仍在经历持续的治疗影响，许多男性报告存在未满足的需求，且缺乏多学科护理的连续性。实施协调和定制的生存护理以及多学科从业者的共同护理路径，将促进男性更好地参与并及时获得支持性护理干预措施，有助于避免“生存鸿沟”。
