Research Centre for Autonomy and Participation of Chronically Ill People, Zuyd University of Applied Sciences, Heerlen, The Netherlands.
Department of Family Medicine, CAPHRI, Maastricht University, Maastricht, The Netherlands.
Health Expect. 2021 Apr;24(2):478-490. doi: 10.1111/hex.13189. Epub 2021 Jan 13.
Patient and public involvement (PPI) in quality improvement of oncological care pathways for older patients are rare.
Improve the care pathway experience of older cancer patients and explore lessons learned regarding how to engage this vulnerable group.
Experience-Based Co-Design.
Older cancer patients, their caregivers and healthcare professionals within colorectal and breast cancer care pathways.
Co-design quality improvement teams.
Colorectal cancer care pathway touchpoints were (a) availability of a contact person during diagnostic, treatment and aftercare phases; (b) collaboration between physicians and different hospital departments; (c) continuous relationship with same physician; (d) respectful treatment; (e) and information transfer with primary care. Breast cancer care pathway touchpoints were (a) comprehensive information package and information provision, (b) care planning based on patient preferences, (c) continuity of patient-professional relationship and (d) specialized care in case of vulnerability. Challenges related to PPI included (a) ability of older cancer patients to be reflective, critical and think at a collective level; (b) gaining support and commitment of professionals; (d) overcoming cultural differences and power inequalities; and (e) involving researchers and facilitators with appropriate expertise and position.
This multidisciplinary quality improvement project revealed several challenges of PPI with older cancer patients and their caregivers. Research teams themselves need to assume the role of facilitator to enable meaningful PPI of older cancer patients.
Patient and caregiver representatives and advocates were involved in the design, conduct, analysis, interpretation of the data and preparation of this manuscript.
患者和公众参与(PPI)在改善老年肿瘤患者的肿瘤护理路径质量方面很少见。
改善老年癌症患者的护理路径体验,并探索如何使这一弱势群体参与进来的经验教训。
基于经验的共同设计。
结直肠癌和乳腺癌护理路径中的老年癌症患者、他们的照顾者和医疗保健专业人员。
共同设计质量改进团队。
结直肠癌护理路径的接触点包括:(a)在诊断、治疗和康复阶段有联系人;(b)医生与不同医院科室之间的协作;(c)与同一名医生保持持续的关系;(d)尊重患者;(e)与初级保健的信息传递。乳腺癌护理路径的接触点包括:(a)全面的信息包和信息提供;(b)基于患者偏好的护理计划;(c)患者与专业人员的关系连续性;(d)在脆弱性情况下提供专业护理。与 PPI 相关的挑战包括:(a)老年癌症患者进行反思、批判性思考和集体思考的能力;(b)获得专业人员的支持和承诺;(d)克服文化差异和权力不平等;(e)涉及具有适当专业知识和地位的研究人员和促进者。
这项多学科的质量改进项目揭示了老年癌症患者及其照顾者参与 PPI 的一些挑战。研究团队本身需要承担促进者的角色,以使老年癌症患者能够进行有意义的 PPI。
患者和护理人员代表以及倡导者参与了设计、进行、分析、解释数据和准备本手稿。