Ose Dominik, Winkler Eva C, Berger Sarah, Baudendistel Ines, Kamradt Martina, Eckrich Felicitas, Szecsenyi Joachim
Department of General Practice and Health Services Research, University Hospital Heidelberg, Heidelberg, Germany.
Department of Population Health, Health System Innovation and Research, University of Utah, Salt Lake City, UT, USA.
Patient Prefer Adherence. 2017 Apr 10;11:731-742. doi: 10.2147/PPA.S127612. eCollection 2017.
Given the inherent complexity of cancer care, in which personal, social, and clinical aspects accumulate and interact over time, self-management support need to become more comprehensive. This study has the following two aims: 1) to analyze and describe the complexity of individual patient situations and 2) to analyze and describe already established self-management strategies of patients to handle this complexity.
A qualitative study was conducted. Ten focus groups were performed collecting perspectives of the following three user groups: patients with colorectal cancer (n=12) and representatives from support groups (n=2), physicians (n=17), and other health care professionals (HCPs; n=16). Data were analyzed using qualitative content analysis.
The results showed that cancer patients are struggling with the complexity of their individual situations characterized by the 1) "complexity of disease", 2) "complexity of care", and 3) "complexity of treatment-related data". To deal with these multifaceted situations, patients have established several individual strategies. These strategies are "proactive demanding" (eg, to get support and guidance or a meaningful dialog with the doctor), "proactive behavior" (eg, preparation of visits), and "proactive data management" (eg, in terms of merging treatment-related data and to disseminate these to their health care providers).
Patients with colorectal cancer have to handle a high complexity of individual situations within treatment and care of their disease. Private and social challenges have a culminating effect. This complexity increases as patients experience a longer duration of treatment and follow-up as patients have to handle a significantly higher amount of data over time. Self-management support should focus more on the individual complexity in a patient's life. This includes assisting patients with strategies that have already been established by themselves (like preparation of visits).
鉴于癌症护理本身的复杂性，其中个人、社会和临床方面会随着时间积累并相互作用，自我管理支持需要变得更加全面。本研究有以下两个目标：1）分析和描述个体患者情况的复杂性；2）分析和描述患者已建立的应对这种复杂性的自我管理策略。
进行了一项定性研究。开展了10个焦点小组，收集以下三个用户群体的观点：结直肠癌患者（n = 12）和支持小组代表（n = 2）、医生（n = 17）以及其他医疗保健专业人员（HCPs；n = 16）。使用定性内容分析法对数据进行分析。
结果表明，癌症患者正在应对其个体情况的复杂性，其特点是1）“疾病复杂性”、2）“护理复杂性”和3）“治疗相关数据复杂性”。为应对这些多方面的情况，患者建立了多种个人策略。这些策略包括“积极要求”（例如，获得支持和指导或与医生进行有意义的对话）、“积极行为”（例如，就诊准备）和“积极数据管理”（例如，合并治疗相关数据并将其提供给医疗保健提供者）。
结直肠癌患者在疾病治疗和护理过程中必须应对高度复杂的个体情况。个人和社会挑战具有累积效应。随着患者治疗和随访时间延长，这种复杂性会增加，因为患者需要处理的数据量会显著增多。自我管理支持应更多地关注患者生活中的个体复杂性。这包括协助患者运用他们自己已经建立的策略（如就诊准备）。
