Patient-Reported and Parent Proxy-Reported Outcomes in Pediatric Medical Specialty Clinical Settings: A Systematic Review of Implementation

Abstract

Objective Youth with chronic illness are at higher risk for psychosocial difficulties, leading to a call for screening via patient-reported outcomes (PROs). The purpose of the current review is to summarize PRO implementation in pediatric medical specialty settings. A literature review of PRO implementation in these settings, conceptual issues, value and approach, legal and ethical concerns, as well as a case example of PROA in type 1 diabetes are presented. Methods A systematic review was conducted to identify relevant articles published since the most recent Journal of Pediatric Psychology Special Issue on Evidence-Based Assessment in Pediatric Psychology (2008). Results Thirty-two articles were identified and reviewed. The majority of studies reported that PROA was feasible, did not disrupt clinic flow, identified psychosocial issues warranting intervention, and was acceptable to families and providers. Response to elevated scores and impact on behavioral health referrals varied. Conclusion While many evidenced-based assessment measures are well-validated within pediatric chronic illness groups, the literature regarding implementation of PROs is still emerging. Research findings are promising, with PROs being feasible, acceptable, and leading to increased discussion of psychosocial issues when integrated into pediatric medical settings. Additional research is needed to evaluate the longitudinal impact of PROs and the optimal manner of responding to assessment data, particularly when clinically-elevated. Ultimately, identifying psychosocial issues in pediatric medical settings can promote optimal health and well-being of youth with chronic illness and their families.

Using Person-Reported Outcomes (PROs) to Motivate Young People with Diabetes

“…The assessment of person-reported outcomes (PROs) provides a unique opportunity to tap into the experiences of the person with diabetes and their families, and may give the health care provider a more complete picture of the person's unique perspective on their health and well-being [22]. The brief behavioral strategies for screening and emotional support that go hand in hand with the use of PROs may further facilitate this process [21]. Guidelines and recommendations from both pediatric and adult diabetes professional associations support assessing PROs during routine clinical care [10,19,20].…”

“…An example is routine monitoring of HRQOL which provide scores across different domains that matter to the person, generic as well as diabetes-specific. This facilitates discussion between people with diabetes and clinicians regarding psychosocial concerns as well as the different domains of HRQOL in relation to diabetes self-management and well-being [17,21,22,30,31]. More recently, multi-dimensional person-centered PROMs (profile measures) are being co-developed with people living with diabetes to enable active participation and collaboration between the health care team and people with diabetes and their families [18].…”

“…The next step is implementation of PROMs in clinical care. Multiple reviews exist in the literature summarizing research regarding the use of PROMs on topics such as the use of PROs for persons and proxies in pediatric medical specialty clinics [21], the impact of PROMs on person-centered (pediatric) diabetes care [18,22], and PROMs addressing specific topics, e.g., adherence and self-management [12]. The high-level findings of these reviews indicate that the use of PROMs is generally feasible and acceptable for young persons with diabetes, families, and diabetes care providers and helps focus the clinical encounter more on psychosocial factors and drive care decisions.…”

“…The high-level findings of these reviews indicate that the use of PROMs is generally feasible and acceptable for young persons with diabetes, families, and diabetes care providers and helps focus the clinical encounter more on psychosocial factors and drive care decisions. However, results are mixed or limited regarding the impact on psychosocial outcomes, adherence, self-management, glycemic outcomes, and whether their use impacts referrals and access to specialty care [21,22]. The reviews emphasize that using PROMs alone does not seem sufficient to influence clinical and psychosocial outcomes, but rather should be used to guide clinical conversations to elicit the person's perspective about topics to inform a meaningful intervention or follow-up [18,21].…”

“…Despite these recent developments in and recommendations of the use of PROs in clinical care [10,19,20], the literature on integration of PROs in diabetes clinical care is relatively new. Therefore, much remains to be learned about the most effective way for health care teams to utilize PROs to motivate young people with T1D and to improve selfmanagement and glycemic outcomes [9,21]. In this manuscript, we aim to review how PROs are currently used in care for young people with diabetes, and how they can additionally be utilized to engage young people in their care, and to motivate them for behavior change.…”