Objectives
- 1.Describe characteristics of ENABLE CHF-PC study patient participants randomized to receive the intervention who did and did not complete semi-structured qualitative interview querying about their perspectives concerning intervention dose, dose effect, and trial experience.
- 2.Describe common intervention dose, trial experience, and outcome categories and themes described by ENABLE CHF-PC patient participants.
- 3.Describe implications for early palliative care trials and palliative care intervention design (with an emphasis on dosing aspects) for persons living with advanced heart failure in the Southeastern US.
Background
Understanding palliative care intervention dose and dose experience is a critical step for developing interventions for the 6.2 million US adults living with heart failure.
Research Objectives
To explore ENABLE CHF-PC (Educate, Nurture, Advise Before Life Ends Comprehensive Heart Care for Patients and Caregivers) participants’ perspectives and experiences with an early palliative care intervention dose attributes.
Methods
We invited all available ENABLE CHF-PC intervention participants to participate in a semi-structured phone interview to elicit their experiences with intervention dose attributes (amount, duration, frequency, and intensity), content, trial participation, and intervention impact on QoL and healthcare resource use. Interviews were transcribed verbatim and analyzed using constant comparative analysis.
Results
Of 86 invited participants, 45 were able to be contacted and interviewed. Interview/non-interview participant groups were well-balanced with no significant between-group differences in baseline sociodemographic characteristics or primary outcomes except gender. Interview participants were an average age of 62.6 (SD 7.3); 71.1% female; 66.7% African American; 66.7% urban residents. Fourteen themes emerged clustering around 3 categories: 1) intervention impressions and dose attributes, 2) individual contexts (e.g. life considerations like employment, caregiving responsibilities, comorbidities), and 3) study outcomes. Description of dose attributes (e.g. duration, frequency, amount, intensity, timing, and delivery), included the relationship on outcome change. The intervention was well-received, but participants varied on how the intervention dose should be modified to achieve intended outcomes. They described their study experience as filtered through a personal contextual lens (disease-related factors, family support, nurse coach relationship, emotions) which impacted their intervention experience and potentially their outcomes. Participants also described overall study impact on their health-seeking behaviors, HF knowledge, provider communication, and non-healthcare relationships.
Conclusion
The intervention dose and experience resonated differently among participants.
Implications for Research, Policy, or Practice
These differing perspectives of early palliative care intervention dose and design support the rationale for considering principles of precision medicine, adaptive interventions, and SMART trial design.
Article info
Identification
Copyright
© 2021 Published by Elsevier Inc.
