Booth Sara, Farquhar Morag, Gysels Marjolein, Bausewein Claudia, Higginson Irene J
Addenbrooke's Hospital, Hills Road, Cambridge, UK.
Palliat Support Care. 2006 Sep;4(3):287-93. doi: 10.1017/s1478951506060366.
Disabling breathlessness is the most common symptom of advanced cardiopulmonary disease. It is usually intractable, even when patients receive maximal medical therapy for their underlying condition. A pilot study was undertaken to evaluate a newly formed palliative Breathlessness Intervention Service (BIS).
The methodology followed the Medical Research Council's Framework for the Evaluation of Complex Interventions (Phase I). Qualitative interviews were completed with patients and relatives who had used the service and clinicians who had referred to it. The focus of the interviews was the participants' experience of using BIS.
Patients valued the positive educational approach taken to breathlessness, emphasizing what was possible rather than what had been lost. Non-pharmacological strategies, especially the hand-held fan and exercises, were rated very helpful and new to patients. Participants reiterated that breathlessness was frightening and isolating, exacerbating the disability it caused: the easy access to advice and flexibility of BIS helped to alleviate this. Participants wanted a written record of the advice given. Carers welcomed the focus on their needs. Clinicians valued sharing the management of patients with an intractable problem.
This Phase I study has helped to remodel the service rapidly by uncovering the aspects of BIS that users find most valuable and areas that need change or improvement. The BIS needs to provide written information, to reinforce and extend contacts with other agencies to build on support it already provides for patients and carers, and extend its flexibility and accessibility. Providing a "drop-in" service and continuing education after the initial program of contacts is completed could be a useful service development, warranting further evaluation. A qualitative methodology involving service users and referrers can help to shape service development rapidly.
致残性呼吸困难是晚期心肺疾病最常见的症状。即便患者针对其基础疾病接受了最大程度的药物治疗，它通常仍难以治疗。开展了一项试点研究，以评估新成立的姑息性呼吸困难干预服务（BIS）。
该方法遵循医学研究委员会的复杂干预评估框架（第一阶段）。对使用过该服务的患者和亲属以及转诊至该服务的临床医生进行了定性访谈。访谈重点是参与者使用BIS的体验。
患者重视针对呼吸困难采取的积极教育方法，强调的是所能做到的而非所失去的。非药物策略，尤其是手持风扇和锻炼，被认为非常有帮助且患者此前并不了解。参与者重申，呼吸困难令人恐惧且使人孤立，加剧了其所导致的残疾：BIS易于获取建议且灵活性高，有助于缓解这一情况。参与者希望能有给出建议的书面记录。护理人员对关注他们的需求表示欢迎。临床医生重视与他人共同管理患有难治性问题的患者。
这项第一阶段研究通过揭示用户认为BIS最有价值的方面以及需要改变或改进的领域，有助于迅速重塑该服务。BIS需要提供书面信息，加强并扩展与其他机构的联系，以巩固其已为患者和护理人员提供的支持，并提高其灵活性和可及性。在初步接触计划完成后提供“即到即服务”和继续教育可能是一项有益的服务发展举措，值得进一步评估。涉及服务使用者和转诊者的定性方法有助于迅速推动服务发展。
