Health Behaviour Research Collaborative, School of Medicine and Public Health, University of Newcastle, Callaghan, NSW, 2308, Australia.
Priority Research Centre for Health Behaviour, University of Newcastle, Callaghan, NSW, 2308, Australia.
Support Care Cancer. 2018 Aug;26(8):2843-2849. doi: 10.1007/s00520-018-4140-2. Epub 2018 Mar 9.
To describe the perceptions of haematological cancer patients about the components of care deemed essential to supporting them to obtain and understand information about their cancer, its treatment and its impact on their life.
A cross-sectional survey was conducted with individuals diagnosed with haematological cancer. Eligible patients presenting for a scheduled outpatient appointment were invited to complete a pen-and-paper survey in the clinic waiting room while waiting for their appointment. Those who completed the survey were mailed a second survey approximately 4 weeks later. Participants provided data about their demographic and disease characteristics and perceptions of optimal care for haematological cancer patients.
A total of 170 patients completed both surveys and were included in the analysis. The items endorsed as essential components of care by the highest number of participants were being able to share accurate information about their disease, treatment and ongoing care with their GP/family doctor (49%); being able to obtain up-to-date information specific to their circumstances (43%); being able to obtain information in the amount of detail that they want (34%); being able to call a health care professional at the treatment centre where they are receiving care (34%) and being able to call an experienced health care professional who has knowledge of their disease and its treatment (34%).
Further research is needed to determine ways of meeting the preferences of haematological cancer patients and determining the associated impact on patient outcomes.
描述血液癌症患者对支持他们获取和理解有关癌症、治疗及其对生活影响的信息的护理要素的看法。
采用横断面调查的方法对确诊为血液癌症的个体进行研究。在预约门诊就诊期间，邀请符合条件的患者在诊所候诊室填写纸质调查问卷。完成调查的患者会在大约 4 周后收到第二份邮寄调查问卷。参与者提供了有关其人口统计学和疾病特征以及对血液癌症患者最佳护理的看法的数据。
共有 170 名患者完成了两份调查并纳入分析。得到最多参与者认可的护理要素包括能够与他们的全科医生/家庭医生分享有关疾病、治疗和持续护理的准确信息（49%）；能够获得针对自身情况的最新信息（43%）；能够获得他们希望了解的详细信息（34%）；能够拨打他们正在接受治疗的治疗中心的医疗保健专业人员的电话（34%）；以及能够拨打一位了解他们的疾病及其治疗的经验丰富的医疗保健专业人员的电话（34%）。
需要进一步研究确定满足血液癌症患者偏好的方法，并确定其对患者结局的影响。
