Quality, Accessibility and Coordination of Health Care in Norway for People with Chronic Illnesses - Seen From the Users Point of View, 2013

While modern biomedicine revolutionised doctors ability to diagnose, treat and cure a wide range of diseases, health services in the western world struggle to meet the needs of an increasing number of people with complex chronic illnesses in need of long- term coordinated care. Patients with chronic conditions which are difficult to explain, diagnose and cure, including so-called medically unexplained physical symptoms (MUPS), are especially challenging. When a clear etymology, precise diagnostic tools and efficient treatments are lacking, the medical encounter becomes difficult for both doctor and patient. This project was designed to gain knowledge about how this user group experience the quality, accessibility and coordination of primary and secondary health care in the Norwegian National Health System. The main questions were: How do chronically ill persons perceive the quality, accessibility and coordination of national health services? Are their experiences systematically associated with gender, age, place of residence, or socioeconomic position? And what needs to be done to improve services offered to patients with complex chronic conditions? Cases chosen for the empirical study were people with Myalgic Encephalomyelitis (ME) and people with coeliac disease (CD). Special attention were given to women with ME. The project involved an international collaboration with a multidisciplinary group of researchers from three countries with similar National health systems: England, Canada and Norway.

尽管现代生物医学彻底改变了医生对多种疾病的诊断、治疗与治愈能力，但西方世界的医疗服务仍难以满足日益增多的复杂慢性病患者对长期协调护理的需求。其中，患有难以解释、诊断和治愈的慢性病（包括所谓的医学无法解释的躯体症状（MUPS））的患者尤其具有挑战性。当缺乏明确的病因、精准的诊断工具和有效的治疗方法时，医患互动对双方而言都会变得困难。

本项目旨在了解该用户群体对挪威国家医疗体系中初级和二级医疗服务的质量、可及性与协调性的体验。核心问题包括：慢性病患者如何看待国家医疗服务的质量、可及性与协调性？他们的体验是否与性别、年龄、居住地或社会经济地位存在系统性关联？需采取哪些措施来改善为复杂慢性病患者提供的服务？

实证研究选取的案例为肌痛性脑脊髓炎（ME）患者和乳糜泻（CD）患者，其中特别关注ME女性患者。该项目涉及与来自英国、加拿大和挪威这三个拥有相似国家医疗体系的多学科研究团队的国际合作。