探索背后的动机理想黑色素瘤生存护理计划与多方利益相关者:共同创造的研究。

IF 3.3 Q2 ONCOLOGY JMIR Cancer Pub Date : 2025-01-02 DOI:10.2196/55746
Nadia Christina Willemina Kamminga, Marjolein Lugtenberg, Julia Annabel Van den Broek, Tamar Nijsten, Marlies Wakkee, Kasia Tabeau
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引用次数: 0

摘要

背景:幸存者护理计划(SCPs),即针对癌症幸存者的个性化医疗保健计划,可用于支持越来越多的黑色素瘤幸存者的整个疾病轨迹。然而,scp的实施和有效性是次优的,可以从利益相关者参与开发以用户为中心的设计中获益。目的:本研究的目的是根据不同的利益相关者,确定黑色素瘤患者理想的SCP的功能和特征,并探讨其潜在的动机。方法:共组织了3次共同创造会议,参与者包括有黑色素瘤病史的患者(n=4)、从事黑色素瘤护理的医疗保健提供者(n=3)和医院IT部门的IT专家(n=6)。他们被邀请根据先前定性研究确定的潜在功能和特征组成理想的黑色素瘤SCP。这些功能和特征属于生存关怀(SSC)的四个主要类别之一:(1)信息和教育,(2)识别和治疗,(3)肿瘤随访,(4)协调。参与者被邀请解释他们加入功能和特性的动机。利益相关者之间分享了想法,促进了互动。描述性统计用于确定每个利益相关者群体的理想SCP。为了分析潜在的动机,所有的共同创造会议都被录音,逐字记录下来,并在主题内容分析中进行分析。结果:对于理想的scp,所有利益相关者都添加了所有4种SSC类别的功能。患者组装了一个相当紧凑的SCP,第2类的识别和治疗是最重要的。HCPs和IT专业人员都构建了一个更大的SCP,第3类肿瘤随访是最重要的方面,HCPs也关注第4类协调。至于他们理想的SCP组合物背后的动机,患者主要是根据他们的个人经验或其他患者的经验添加功能,而医护人员和IT专业人员主要是根据他们各自的专业领域添加功能:医护人员将他们添加的功能与他们作为医生的角色联系起来;例如,在提供完整的治疗计划和获得知情同意方面,而IT专业人员的贡献主要受到可行性和隐私问题的影响。结论:这项共同创造研究提供了利益相关者理想的黑色素瘤SCP及其背后动机的见解。考虑到患者、HCPs和IT专家在SCP组成方面的偏好和潜在动机的多样性,开发一种超越传统SCP内容、强调个性化的广泛SCP是至关重要的。除了利益相关者的持续参与外,还应努力解决潜在的可行性和隐私问题,以确保SCP满足患者和医护人员的需求。
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Exploring Motives Behind Ideal Melanoma Survivorship Care Plans With Multiple Stakeholders: A Cocreation Study.

Background: 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.

Objective: 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.

Methods: 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.

Results: 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.

Conclusions: 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.

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来源期刊
JMIR Cancer
JMIR Cancer ONCOLOGY-
CiteScore
4.10
自引率
0.00%
发文量
64
审稿时长
12 weeks
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