McErlean Gemma, Brice Lisa, Gilroy Nicole, Kabir Masura, Greenwood Matt, Larsen Stephen R, Moore John, Gottlieb David, Hertzberg Mark, Brown Louisa, Hogg Megan, Huang Gillian, Ward Christopher, Kerridge Ian
School of Nursing, Faculty of Science, Medicine and Health, University of Wollongong, Wollongong, NSW, Australia.
Cancer Services, South Western Sydney Local Health District, Sydney, NSW, Australia.
J Cancer Surviv. 2022 Apr;16(2):432-444. doi: 10.1007/s11764-021-01038-2. Epub 2021 Apr 4.
Allogenic blood and marrow transplant (allo-BMT) is an arduous treatment used increasingly for many life-threatening conditions. Recognition of the profound impacts of the long term and late effects is ever-growing, as is the healthcare workload (treatment burden) of survivorship.
To quantify the treatment burden of long-term survival following allo-BMT, regarding the range of health services, therapies and investigations accessed by survivors.
A large, multi-centre cross-sectional survey of adult allo-BMT survivors transplanted between 2000 and 2012 in Sydney, Australia. Participants completed six validated instruments and one purposed designed for the study, the Sydney Post BMT Study (SPBS), answering questions relating to medication use, medical treatments, referrals, assessments and frequency of hospital/clinic attendance.
Of the 441 allo-BMT survivors, over a quarter who were more than 2 years post BMT attended the hospital clinic at least monthly, and 26.7% required a number of regular medical procedures (e.g. venesection, extracorpororeal photopheresis). Specialist medical and allied health referral was very common, and compliance with internationally recommended long-term follow-up (LTFU) care was suboptimal and decreased as time from BMT increased.
Respondents reported a large medication (conventional and complementary), screening, assessment and health care burden.
Treatment burden contributes significantly to the 'workload' of survivorship and can have a severe and negative impact on BMT survivors, carers and the healthcare system-making it difficult to comply with optimal care. Clinicians must be primed with skills to identify survivors who are overburdened by the health care required for survival and develop strategies to help ease the burden.
同种异体血液和骨髓移植（allo-BMT）是一种用于多种危及生命疾病的艰巨治疗方法。对长期和晚期影响的深刻认识不断增加，幸存者的医疗工作量（治疗负担）也是如此。
量化allo-BMT后长期生存的治疗负担，涉及幸存者所使用的健康服务、治疗和检查范围。
对2000年至2012年在澳大利亚悉尼接受移植的成年allo-BMT幸存者进行了一项大型多中心横断面调查。参与者完成了六项经过验证的工具以及一项为该研究专门设计的工具，即悉尼BMT后研究（SPBS），回答了有关药物使用、医疗治疗、转诊、评估以及医院/诊所就诊频率的问题。
在441名allo-BMT幸存者中，超过四分之一在BMT后两年以上的人至少每月到医院诊所就诊一次，26.7%的人需要进行一些常规医疗程序（如静脉切开术、体外光化学疗法）。专科医疗和相关健康转诊非常普遍，对国际推荐的长期随访（LTFU）护理的依从性不理想，并且随着距BMT时间的增加而降低。
受访者报告了大量的药物（传统和补充药物）、筛查、评估和医疗负担。
治疗负担对生存“工作量”有重大贡献，并且可能对BMT幸存者、护理人员和医疗系统产生严重负面影响，使得难以遵守最佳护理。临床医生必须具备识别因生存所需医疗保健负担过重的幸存者的技能，并制定减轻负担的策略。
