Wahab Sakeenah, Joshua Anthony, Dhillon Haryana M, Barnet Megan
Hornsby Ku-Ring-Gai Hospital, Hornsby, NSW, Australia.
Vincent's Hospital Sydney, Darlinghurst, NSW, Australia.
J Cancer Surviv. 2024 Aug 14. doi: 10.1007/s11764-024-01655-7.
In the cancer context, exceptional response incorporates unusual or unexpected response to anti-cancer treatment. For this study, exceptionally 'good' responses are defined as progression-free survival of more than three times the median from comparable trials. We aimed to explore how people meeting the definition of exceptional response to systemic cancer treatment experience adjust to their unexpected survivorship.
Individuals with 'exceptional response' to anti-cancer therapy nationally were referred by their treating clinicians to the Exceptional Responders Program. We conducted a qualitative sub-study involving semi-structured interviews with purposively selected participants. Those eligible had metastatic cancer, had survived at least 3 times the expected time since diagnosis, spoke English, and were aged > 18 years. Interviews were audiorecorded, transcribed and analysed thematically; and continued until thematic saturation was achieved.
Twenty participants were interviewed. Thirteen were male (65%) with a median age of 63 years. Median time since cancer diagnosis was 6.5 years (range 3-18); survival times ranged between 3 and 10 times that expected. We identified four themes which varied in importance between individuals and over time.
Exceptional responders may benefit from routine screening of distress and unmet needs to provide psychosocial support. Clinical services must focus on first capturing and then tailoring care to meet the diverse needs of this growing cohort.
Adjustment to a diagnosis of advanced cancer and subsequent unexpected long-term survival is an often isolating experience and is common amongst exceptional responders. Seeking psychological and social support may assist with adjustment.
在癌症领域，特殊反应是指对抗癌治疗出现不寻常或意想不到的反应。在本研究中，异常“良好”反应被定义为无进展生存期超过同类试验中位数的三倍。我们旨在探讨符合系统性癌症治疗特殊反应定义的人群如何适应其意外的生存期。
全国范围内对抗癌治疗有“特殊反应”的个体由其主治医生转介至特殊反应者项目。我们开展了一项定性子研究，对有目的地挑选出的参与者进行半结构式访谈。符合条件者患有转移性癌症，自确诊以来存活时间至少为预期时间的3倍，说英语，年龄大于18岁。访谈进行录音、转录并进行主题分析；持续进行直至达到主题饱和。
对20名参与者进行了访谈。13名男性（65%），中位年龄63岁。自癌症诊断后的中位时间为6.5年（范围3 - 18年）；生存时间为预期时间的3至10倍。我们确定了四个主题，这些主题在个体之间以及随时间推移重要性有所不同。
特殊反应者可能会从对痛苦和未满足需求的常规筛查中受益，以获得心理社会支持。临床服务必须首先关注识别，然后量身定制护理，以满足这一不断增长群体的多样化需求。
适应晚期癌症诊断及随后意外的长期生存往往是一种孤立的经历，在特殊反应者中很常见。寻求心理和社会支持可能有助于适应。
