Embedded Files
Ultimately, counseling with the use of PROMs can inform patients’ decision regarding whether to have surgery and which surgery to have (e.g., metoidioplasty vs. phalloplasty). At the provider level, there is evidence that PROMs improve patient and physician satisfaction, increase workfow efciency, and enable critical discussions [28]. PROMs help enhance both patient and provider satisfaction by helping physicians set appropriate expectations regarding patients’ outcomes. PROMs can also improve relationships and communication between physicians and patients as surgeons gain better understanding of patients’ priorities and desired outcomes from surgery [28]. Te availability and utilization of PROMs may greatly infuence the success of surgery and potentially avoid the need for revision surgery, which is benefcial to the patient and the provider. Te success of surgery is highly dependent on an individual patient’s values and preferences; a physicians’ defnition of success may be highly divergent from a patients’ defnition. PROMs magnify the individuals’ voice and thereby emphasize and facilitate, for the provider, a patient- centered model of care. Tis patient-centered model of care, facilitated in part by PROMs, portends higher chances of success for the patient. It also gives the surgeon and team an opportunity to understand what is important to their patients. Te use of a PROM tool in this context may be a segue to the development and use of tools to measure patient reported experience measures as well, which would Agochukwu‑Mmonu et al. Journal of Patient-Reported Outcomes (2022) 6:39 Page 3 of 5 further improve patients’ experience of gender-afrming surgery [29]. Finally, at the system level, one can use PROMs as a quality metric [26]. Distinct from clinical outcomes, PROMs can be used to measure structures, processes, and outcomes of health care and thereby, can improve quality of care at each step and in several ways [30]. PROM data can be used to evaluate variation in patient care—specifcally, variation in the “best” outcomes from the patient’s perspectives and subsequently, areas for quality improvement. Tis can thereby lead to modifed processes to improve outcomes and quality. PROMs focus on the efectiveness and experience of care, both of which are essential components of quality. Incorporating PROMs facilitates shared decision-making, which also improves quality of care. Additionally, PROMs have the unique ability to capture two additional major components of clinical care provision and quality—provider accountability and performance measurement. Te potential of collaborative quality improvement among providers in this setting is vast. At the policy level, PROMs are fundamental for a transition from volume to value-based healthcare reform. Validated PROMs may also contribute to advocacy eforts for wider coverage and policies that serve transgender and non-binary patients. In this context, validation is important and refers to a PROM tool, which measures what it intends to measure in the target population [12]. PROMs have been and are currently used in genital gender-afrming surgery research, though they are not validated for use in transgender and non-binary populations nor are they specifc for genital gender-afrming surgery [25]. Te primary role of PROMs is to capture the patients’ voice; given this, amplifcation of the patient’s voice at the forefront of PROM development is crucial. Figure 1 demonstrates a conceptual model for patient- engagement in PROM development; it is critical to have a conceptual framework to guide PRO measurement and assessment [31]. We plan to magnify the patients’ voices at each stage of development of PROMs for genital gender-afrming surgery. We propose early engagement with members of the transgender and non-binary communities in a Community-Based Participatory Research model. Engagement and collaboration with the TGNB community is fundamental in development of PROMs that are meaningful and relevant to the TGNB community and most importantly it will illuminate that which is often invisible—the patient perspective. Trough engagement with LGBTQ community health centers, we are conducting focus group sessions for patients who will undergo or who have undergone phalloplasty, vaginoplasty, and metoidioplasty to gain a deep and detailed understanding of goals, experiences, quality of life, expectations, and aspirations. Qualitative analysis will then lead to convergent themes as depicted in Fig. 2. Members of the transgender and non-binary community are leading or co-leading the focus group sessions. From initial discussions, dialogue, and thematic analysis, we will Goals Experiences Perspectives Satisfaction Expectations Community Engagement Item 1 Item 2 Item 2 Item 3 Item 4 Theme 1 Theme 2 Theme 3 Patient reported outcome measure Domain 1 Domain 2 Domain 3 Iteration Community EngagementDeplhi method Quality Satisfaction Value Patient priorities Expectations Shared decision making Quality Improvement Accountability Performance measurement Patient’s voice Advocacy Patientcentered Generate item pool Fig. 1 Patient-engaged conceptual model of patient reported outcome measure development Agochukwu‑Mmonu et al. Journal of Patient-Reported Outcomes (2022) 6:39
Google Sites
Report abuse