Saunders Carla, Gooden Helen, Robotin Monica, Mumford Jan
School of Medicine and Public Health, The University of Newcastle, Wallsend NSW, Australia.
BMC Res Notes. 2009 Sep 9;2:179. doi: 10.1186/1756-0500-2-179.
This is the first investigation of its kind to explore the views of people affected by pancreatic cancer with regard to research priorities. Pancreatic cancer has an extremely poor outlook in terms of early diagnosis, effective treatment and survival. Those affected by the disease generally lack opportunities to voice their needs or concerns in an organised manner, link with others affected by the condition and take part in research.
This qualitative study adopts a self-selected telephone focussed discussion group approach. Information was obtained from distinct carer and patient groups after adequate controls such as the 'safe space' technique (repeatedly enquiring on and respecting the emotional needs) were implemented to protect participants from undue physical and psychological distress.
Five themes emerged overall, with three themes being common between the patients and carers groups. Early detection, clinician communication and public awareness were areas of recurring discussion and consensus for both groups. The fourth theme to emerge for the patient group centred on quality of care, while the fourth theme of the carer group focused on the need for more and improved treatment options.
Research priorities for pancreatic cancer consumers have been identified via an investigation that was tailored to meet exceptional needs. This research gives us a primary understanding of the role that pancreatic cancer patients can play in identifying areas of research that are responsive to their needs and priorities when suitably planned. Importantly it also provides a much greater understanding of the grim realities of the disease for those affected. This work is likely to be of value to anyone planning to work with those with a time limited, challenging condition.
这是同类研究中首次探索胰腺癌患者对于研究重点的看法。胰腺癌在早期诊断、有效治疗和生存方面前景极差。受该疾病影响的人群通常缺乏以有组织的方式表达自身需求或担忧、与其他患者建立联系以及参与研究的机会。
这项定性研究采用了自我选择的电话焦点讨论组方法。在实施了诸如“安全空间”技术（反复询问并尊重情感需求）等适当控制措施以保护参与者免受过度的身体和心理困扰后，从不同的护理人员和患者群体中获取了信息。
总体上出现了五个主题，其中三个主题在患者和护理人员群体中是共有的。早期检测、与临床医生的沟通以及公众意识是两组反复讨论并达成共识的领域。患者群体出现的第四个主题围绕护理质量，而护理人员群体的第四个主题则侧重于需要更多且更好的治疗选择。
通过一项针对特殊需求进行定制的调查，确定了胰腺癌患者对于研究重点的看法。这项研究让我们初步了解到，在经过适当规划后，胰腺癌患者在确定符合其需求和优先事项的研究领域时可以发挥的作用。重要的是，它还让我们更深入地了解了该疾病给患者带来的严峻现实。这项工作可能会对任何计划与患有这种时间有限且具有挑战性疾病的患者合作的人有价值。
