RESUMEN
Providing high-quality patient-centered care is the central mission of dialysis facilities. Assessing quality and patient-centeredness of dialysis care is necessary for continuous dialysis facility improvement. Based predominantly on readily measured items, current quality measures in dialysis care emphasize biochemical and utilization outcomes, with very few patient-reported items. Additionally, current metrics often do not account for patient preferences and may compromise patient-centered care by limiting the ability of providers to individualize care targets, such as dialysis adequacy, based on patient priorities rather than a fixed numerical target. Developing, implementing, and maintaining a quality program using readily quantifiable data while also allowing for individualization of care targets that emphasize the goals of patients and their care partners provided the motivation for a September 2022 Kidney Disease Outcomes Quality Initiative (KDOQI) Workshop on Patient-Centered Quality Measures for Dialysis Care. Workshop participants focused on 4 questions: (1) What are the outcomes that are most important to patients and their care partners? (2) How can social determinants of health be accounted for in quality measures? (3) How can individualized care be effectively addressed in population-level quality programs? (4) What are the optimal means for collecting valid and robust patient-reported outcome data? Workshop participants identified numerous gaps within the current quality system and favored a conceptually broader, but not larger, quality system that stresses highly meaningful and adaptive measures that incorporate patient-centered principles, individual life goals, and social risk factors. Workshop participants also identified a need for new, low-burden tools to assess patient goals and priorities.
RESUMEN
Introduction: Our Whole Lives-Hypertension (OWL-H) is an eHealth toolkit for hypertension and cardiac risks factors. It is a hybrid online self-management platform that teaches blood pressure (BP) self-monitoring and evidence-based lifestyle modifications combined with in-person teaching kitchen medical group visit. Qualitative feedback from participants regarding the facilitators and barriers of using OWL-H has been discussed in this article. Methods: The OWL-H platform was pilot tested in a pre-post trial with two cohorts of participants with hypertension (N = 24). The online intervention utilized OWL-H for teaching mindfulness meditation, the Dietary Approaches to Stop Hypertension nutrition plan, and evidence-based strategies for lifestyle modifications. Three in-person teaching kitchen medical group visits were held to demonstrate cooking skills to reinforce the online platform. Semi-structured focus group discussions (FGDs) were held after the intervention. Results: Fourteen of the 24 participants in the trial participated in the FGDs, and 1 participant provided feedback in a solo interview. Major themes that emerged included: (1) participants' request to tailor OWL-H's recipes and meal planning to suit their own dietary needs or preferences, to personalize the Home Practices (e.g., meditation) according to individual preferences (e.g., addition of nature sounds or guided visual imagery); (2) the strengths and weaknesses of OWL-H as a BP self-monitoring tool; (3) the need for community support in managing BP; and (4) participants noted lack of time, work and commute, Internet connectivity, stress, and sickness as obstacles in using OWL-H. Participants described feeling outpaced by the growth of technology and raised concerns of poor Internet connectivity hampering their use of OWL-H. Conclusion: OWL-H and the accompanying teaching kitchen medical group visit are potential tools to help reduce hypertension and cardiac risk factors. The intervention was found to have acceptability among people with lower income. Clinical Trials Registration#: NCT03974334.