Health and Wellness Coaching to Reduce Care Burden in ADPKD: A Mixed-Methods Pilot Study of BeWell360-PKD Dyadic Model.

Background: Autosomal Dominant Polycystic Kidney Disease (ADPKD) imposes substantial care burden on patients and their informal caregivers (CGs), often contributing to nonadherence and impaired quality of life. Existing care models insufficiently address the behavioral and psychosocial dimensions of this burden. To evaluate the feasibility and impact of BeWell360-PKD , a person-centered intervention integrating Health and Wellness Coaching (HWC) and capacity-workload support into ADPKD care, on care burden, adherence, self-efficacy, activation, and resilience.

Methods: In this six-month, single-arm, mixed-methods pilot study, seven patient-CG dyads were enrolled from tertiary-care PKD clinic. Board-certified HWCs delivered individualized coaching within routine nephrology care, emphasizing capacity-building, goal setting, and care enactment support. Primary outcomes included changes in treatment burden (Treatment Burden Questionnaire [TBQ], ADPKD Impact Scale [ADPKD-IS]) and CG burden (Burden Scale for Family Caregivers [BSFC-s]). Secondary outcomes included patient activation and resilience, and CG self-efficacy. Semi-structured interviews explored participant experiences.

Results: Patients experienced reduced treatment burden (TBQ mean change -9.3) and modest, domain-specific improvements in physical and fatigue-related ADPKD symptom burden. CG self-efficacy improved (+2.4), while CG burden increased (+14.8), and patient activation declined (-6.6). Qualitative themes reflected disease burden, emotional adaptation, and the perceived value of coaching in promoting behavior change and relational support.

Conclusions: BeWell360-PKD was feasible to implement and demonstrated early signals of benefit in reducing patient burden and improving CG self-efficacy. Increased caregiver burden and declining activation highlight the complexity of dyadic adaptation in ADPKD and the need for larger, controlled studies to refine and tailor coaching interventions.