Person-reported outcome measures (PROMs) are standardized, validated questionnaires designed to measure PROs [
26]. A distinction can be made between generic and disease-specific measures. While generic questionnaires may capture more common aspects of the person’s life and allow for comparison with normative populations, disease-specific questionnaires may be more sensitive to specific symptoms experienced by persons with diabetes [
27]. In clinical practice, it depends on the purpose whether a generic and/or diabetes-specific questionnaire is most suitable.
The International Society Of Quality Of Life (ISOQOL) taxonomy of PROMs in clinical practice distinguishes different applications and types of instruments which need to be taken into account when choosing PROMs [
26]. In this taxonomy, a distinction can be made between screening tools and monitoring tools. First,
screening tools are PROMs that can help identify problems that may otherwise have gone unnoticed. Often,
preference-based measures are used for this purpose which provide a single score, aggregated across one or multiple PRO domains, that is interpreted based on norm scores for an estimate of severity. An example is screening for depressive symptoms, where a generic depressive symptoms questionnaire with an established cut-off is used to screen young people at risk for depression [
28]. PROMs used for psychosocial screening allow for care that is proactive rather than reactive, as it enables early identification of mental health symptoms and other concerns, hence, facilitating interventions and hopefully, preventing larger concerns or crises in the future [
9,
29]. However, PROMs used for psychosocial screening tend to put the focus on problems, risks, and vulnerabilities and do not automatically direct the conversation to the bigger picture of living with diabetes and motivations for self-management behaviors in this context. Therefore, second to screening tools,
monitoring tools are PROMs that can track changes over time and become an important part of person-centered care when feedback is provided not only to the clinician but also to the person with diabetes.
Profile measures are especially suitable for this purpose as they provide multiple scores across a broad range of PRO domains [
26]. 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. 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].
Most PROMs, including HRQOL instruments, include items that are problem-focused, missing important positive aspects of living with diabetes (e.g., resilience, areas of strengths, self-efficacy, and feeling empowered and supported), which might facilitate conversations about motivation to change self-management behaviors. The MIND Youth-Questionnaire and the recently developed Type 1 Diabetes And Life (T1DAL) measure are some of the first PROMs to assess both positive and risk-related aspects of diabetes-related HRQOL [
32,
33]. Next to these measures, PROMs taking a eudaimonic approach might tap more directly into the motivational aspects. Eudaimonic well-being focuses on appraisals of life as having meaning, purpose, and hope [
34]. It has shown to be linked to autonomous motivation, psychological well-being, positive health-related behaviors, and resistance to the impact of illness [
35]. Therefore, the PROMIS Pediatric Meaning and Purpose item banks could therefore be indicative of the person’s motivation as well as goal-directedness in life in general [
36].
In sum, PROMs are designed and can be used for different purposes depending on the goal, such as screening or monitoring. When implemented in clinical care, a discussion of the PROMs is essential to give providers insight in aspects of the young person’s life that otherwise could have gone unnoticed and to get better insight in the motivation of young people to adhere to self-management recommendations.