Different needs ask for different care: Breast cancer patients’ preferences regarding assessment of care needs and information provision in personalized aftercare

Abstract

Purpose

Aftercare for curatively treated breast cancer patients includes support and information provision. As patients differ in their needs, personalization of aftercare is advocated, but clear guidelines on how to achieve personalization are currently missing. This study investigates patients’ preferences regarding assessment of care needs and information provision.

Method

Semi-structured interviews were conducted with 18 breast cancer patients (15 female, 3 male) who received aftercare for at least three months in five Dutch hospitals. Interviews were analyzed using thematic analysis.

Results

Several patients perceived current aftercare as too intensive or too little, therefore they preferred to discuss their needs beforehand with their health care provider to align aftercare with their needs. Patients preferred more attention to needs on the domains of social and emotional wellbeing and return to work. Patients preferred a comprehensive resource of information on potential (late) effects of cancer and its treatment and of available support options, enabling them to self-manage the dosage and timing of desired information. Patients had positive expectations about an aftercare plan, as it would provide a better overview of their care needs, support options and agreements about the aftercare trajectory.

Conclusions

To facilitate personalization in aftercare, information and care needs should be better addressed and summarized in an aftercare plan. Patients and healthcare practitioners should create the aftercare plan together in shared decision-making. A supporting tool is needed to improve assessment of care needs on multiple domains, to provide layered information and facilitate use of aftercare plans.