Centre for Cancer Research and Cell Biology, Queen's University Belfast, UK; European Cancer Concord, Leeds, UK.
School of Nursing and Midwifery, Queen's University Belfast, UK.
Eur J Cancer. 2018 Mar;92:88-95. doi: 10.1016/j.ejca.2018.01.074. Epub 2018 Feb 9.
Little is known about how patient groups provide information for patients. We invited 838 patient groups from Europe and North America to participate in an online survey.
The survey covered: (i) availability, accessibility and quality of information provided; (ii) methods by which patient groups communicate; (iii) ways in which patient groups acquire information and confirm its veracity/accuracy; (iv) how people access information online.
European patient groups were significantly less effective in providing medical-related information than their North American counterparts in: clinical trials, potential causes of cancer, medical research, diagnosis/screening, symptoms, treatments (all p < 0.0001); Recommendations of best practice/care (p < 0.03), healthcare services(p = 0.029) and complimentary medicine (p = 0.01). Clinical trials (p = 0.0006), medical research (p = 0.006) and diagnosis/screening (p = 0.0024) were also areas where North American patients were more likely to require medical-related information. Similar patterns emerged for non-medical information with nutrition (<0.0001), watchful waiting (p = 0.0003), self-management of care (p = 0.0003), prevention (p = 0.002) and emotional issues (p = 0.016) being less effectively communicated by European patient groups. Nutrition was also an area where North American patients were more likely to require non-medical-related information. The main barriers in accessing online information which showed differences between European and North American patients were: perceived lack of need, mainly due to faith in their doctors (p = 0.0001); limited access to the internet (p = 0.0005), limited computer skills (p = 0.02); and lower income (p = 0.027).
These results emphasise the more mature nature of cancer patient engagement/information provision in North America, providing valuable insights and guidance to inform development of more robust and effective cancer patient information communication platforms in Europe.
对于患者群体如何为患者提供信息，我们知之甚少。我们邀请了来自欧洲和北美的 838 个患者群体参与在线调查。
该调查涵盖：（i）提供的信息的可用性、可及性和质量；（ii）患者群体沟通的方式；（iii）患者群体获取信息并确认其真实性/准确性的方式；（iv）人们在线获取信息的方式。
与北美患者群体相比，欧洲患者群体在以下方面提供医学相关信息的效果显著较差：临床试验、癌症的潜在原因、医学研究、诊断/筛查、症状、治疗（均 p<0.0001）；最佳实践/护理的建议（p<0.03）、医疗保健服务（p=0.029）和补充医学（p=0.01）。临床试验（p=0.0006）、医学研究（p=0.006）和诊断/筛查（p=0.0024）也是北美患者更可能需要医学相关信息的领域。类似的模式也出现在非医学信息中，营养（<0.0001）、静观其变（p=0.0003）、自我护理（p=0.0003）、预防（p=0.002）和情绪问题（p=0.016），欧洲患者群体的沟通效果较差。营养也是北美患者更可能需要非医学相关信息的领域。在获取在线信息方面，欧洲和北美患者之间存在差异的主要障碍是：感知到的需求不足，主要是由于对医生的信任（p=0.0001）；互联网接入有限（p=0.0005）、计算机技能有限（p=0.02）和收入较低（p=0.027）。
这些结果强调了北美癌症患者参与/信息提供更加成熟的性质，为欧洲开发更强大和有效的癌症患者信息传播平台提供了有价值的见解和指导。
