Abstract

Multiple myeloma (MM) burden on patients has been exhaustively addressed in research; however, the burden of MM on patients’ family-engaged caregivers is often overlooked. Decision-aids (DAs), such as treatment guidance documents, may facilitate shared decision-making for patients and caregivers who are burdened by health-related, financial, and social factors. However, patient and caregiver preferences may not be integrated in DAs. This analysis aimed to evaluate how patient and caregiver preferences were considered in DAs. A targeted literature review was conducted on peer-reviewed publications using PubMed, ProQuest, CINAHL Complete, and Cochrane databases, complemented with a gray literature search. All findings were limited to English language articles published in the past 5 years. Data on whether and how patient and caregiver preferences were mentioned in the identified DAs were extracted and synthesized qualitatively. Forty-one DAs were included. Twenty-two highlighted the importance of considering patient preferences; however, only 11 DAs mentioned any specific factors for consideration. Medical factors included treatment goals, tolerability of aggressive treatment options, frequency and length of hospital visits, mode of drug administration, and limiting future treatment options. Non-medical factors included ability to work and related unemployment, health insurance coverage, direct/indirect costs, distance to hospital, ability to drive, and need for social or transportation support services. Evidence that holistically maps patient and caregiver perspectives is lacking in DAs. There are no interactive MM treatment DAs incorporating patient and caregiver factors. An interactive DA built upon a patient value framework tailored for MM could support more personalized treatment decisions. Patients and caregivers could evaluate treatment options, harmonizing benefit-risk assessment received from healthcare professionals and provide an integrated voice for health technology assessment and regulatory reviews. Collection of real-world evidence to further understand patient and caregiver preferences is needed.

Full Text
Published version (Free)

Talk to us

Join us for a 30 min session where you can share your feedback and ask us any queries you have

Schedule a call