Kamminga Nadia Christina Willemina, Lugtenberg Marjolein, Van den Broek Julia Annabel, Nijsten Tamar, Wakkee Marlies, Tabeau Kasia
Department of Dermatology, Erasmus MC Cancer institute, University Medical Center Rotterdam, Rotterdam, Netherlands.
Department Tranzo, Tilburg School of Social and Behavioral Sciences, Tilburg University, Tilburg, Netherlands.
JMIR Cancer. 2025 Jan 2;11:e55746. doi: 10.2196/55746.
Survivorship care plans (SCPs), ie, personalized health care plans for cancer survivors, can be used to support the growing group of melanoma survivors throughout their disease trajectory. However, implementation and effectiveness of SCPs are suboptimal and could benefit from the involvement of stakeholders in developing a user-centered design.
The aim of this study was to identify the ideal SCP for patients with melanoma in terms of functions and features to be included according to different stakeholders and to explore their underlying motives.
In total, 3 cocreation sessions were organized with mixed samples of stakeholders, ie, patients with (a history of) melanoma (n=4), health care providers (HCPs) active in melanoma care (n=3), and IT specialists active in hospital IT departments (n=6). They were invited to compose their ideal melanoma SCP based on potential functions and features identified from prior qualitative research. These functions and features belonged to one of the four main categories of survivorship care (SSC): (1) information and education, (2) identification and treatment, (3) oncological follow-up, and (4) coordination. Participants were invited to explain their motives for including functions and features. Ideas were shared between stakeholders, and interaction was promoted. Descriptive statistics were used to determine the ideal SCP per stakeholder group. To analyze underlying motives, all cocreation sessions were audio-taped, transcribed verbatim, and analyzed in a thematic content analysis.
With regard to their ideal SCPs, all stakeholders added functions from all 4 SSC categories. Patients assembled a rather compact SCP with category 2 on identification and treatment being most important. Both HCPs and IT professionals constructed a somewhat larger SCP, with category 3 on oncological follow-up being the most important aspect and HCPs also focusing on category 4 on coordination. As for the motives behind their ideal SCP compositions, patients predominantly added functions based on their personal experiences or experiences from fellow patients, whereas both HCPS and IT professionals based their compositions primarily on their respective areas of expertise: HCPs related their additions to their roles as medical practitioners; for example, in providing a complete treatment plan and obtaining informed consent, while IT professionals' contributions were mainly influenced by feasibility and privacy concerns.
This cocreation study provides insights into stakeholders' ideal melanoma SCP and the motivations behind them. Considering the diversity in both the preferences and underlying motives regarding SCP composition between patients, HCPs, and IT specialists, it is crucial to develop a broad SCP that extends beyond traditional SCP content, emphasizing personalization. In addition to continued stakeholder involvement, efforts should be focused on addressing potential feasibility and privacy issues to ensure the SCP meets both patients' and HCPs' needs.
生存护理计划（SCPs），即针对癌症幸存者的个性化医疗保健计划，可用于在黑色素瘤幸存者的整个疾病发展过程中为不断壮大的这一群体提供支持。然而，SCPs的实施和效果并不理想，若有利益相关者参与制定以用户为中心的设计，可能会有所助益。
本研究的目的是根据不同利益相关者的意见，确定黑色素瘤患者理想的SCP应包含的功能和特征，并探究其潜在动机。
总共组织了3次共创会议，参会人员为利益相关者的混合样本，即有（黑色素瘤病史的）患者（n = 4）、从事黑色素瘤护理工作的医疗保健提供者（HCPs，n = 3）以及医院信息技术部门的信息技术专家（n = 6）。邀请他们根据先前定性研究确定的潜在功能和特征，构建他们理想的黑色素瘤SCP。这些功能和特征属于生存护理的四个主要类别之一：（1）信息与教育，（2）识别与治疗，（3）肿瘤学随访，以及（4）协调。邀请参与者解释他们纳入功能和特征的动机。利益相关者之间分享想法，并促进互动。使用描述性统计来确定每个利益相关者群体的理想SCP。为了分析潜在动机，所有共创会议都进行了录音，逐字转录，并进行主题内容分析。
关于他们理想的SCP，所有利益相关者都添加了来自所有4个生存护理类别中的功能。患者构建了一个相对紧凑的SCP，其中第2类识别与治疗最为重要。HCPs和信息技术专业人员都构建了一个稍大的SCP，其中第3类肿瘤学随访是最重要的方面，HCPs还关注第4类协调。至于他们理想的SCP构成背后的动机，患者主要根据自己的个人经历或其他患者的经历添加功能，而HCPs和信息技术专业人员的构成主要基于他们各自的专业领域：HCPs将他们添加的内容与他们作为医生的角色相关联；例如，提供完整的治疗计划和获得知情同意，而信息技术专业人员的贡献主要受到可行性和隐私问题的影响。
这项共创研究深入了解了利益相关者理想的黑色素瘤SCP及其背后的动机。考虑到患者、HCPs和信息技术专家在SCP构成方面的偏好和潜在动机存在差异，开发一个超越传统SCP内容、强调个性化的广泛SCP至关重要。除了利益相关者持续参与外，应集中精力解决潜在的可行性和隐私问题，以确保SCP满足患者和HCPs的需求。
