Unlocking Patient Engagement: The PROMising Challenge
Patient-reported outcomes (PROs) are a powerful tool in healthcare, but their potential is often hindered by challenges in implementation and patient adherence.
PROs, which capture patients' perspectives on their health and treatment, have traditionally been used in randomized controlled trials (RCTs) to assess medical interventions' effectiveness. However, their value in routine clinical care is increasingly recognized, as they can support personalized care, enhance patient-care team communication, and provide real-time insights into treatment effectiveness and quality of life.
But here's where it gets controversial: Despite their importance, collecting PROs in clinical care faces significant obstacles. These include a lack of infrastructure for electronic data collection and limited commitment from healthcare providers due to various reasons, such as unawareness of PRO data relevance or difficulties integrating PRO assessments into clinical workflows.
Moreover, the patient-reported outcome measure (PROM) itself can be a barrier to successful data collection. In routine care settings, where sustained adherence to PRO assessments relies on continuous patient compliance, PROMs must be engaging and relevant to patients. Factors like health literacy, item content relevance, and assessment timing and frequency play a crucial role in patient engagement.
While implementation barriers are well-documented, a research gap exists regarding the influence of PROM-specific factors on adherence. High response rates are vital to ensure the collected PRO data is representative and reliable. Incomplete or biased data can lead to inaccurate assessments of treatment efficacy and patient well-being.
This systematic literature review aims to identify PROM-specific factors that impact patient adherence to PRO assessments in routine care. By focusing on the structure and content of PROMs, we explore how these factors influence acceptance, adherence, and response rates.
Methodology
The review was registered on medRxiv and followed the PRISMA guidelines. A comprehensive search strategy was formed to identify instrument characteristics that affect patient response rates. Inclusion criteria were set to include patients aged 18 or older in routine care settings with multiple medical contacts. Clinical trials and study protocols were excluded.
Seven databases were searched, including MEDLINE, Embase, CINAHL, PsychArticles, PsycInfo, Scopus, and Web of Science. Grey literature was also included to minimize bias. The review covered English and German studies published in the last 10 years, encompassing various study designs such as systematic reviews, observational studies, and qualitative studies.
Results
The initial database search yielded 420 papers, and 10 additional articles were handpicked by the authors. After removing duplicates and screening titles and abstracts, 30 articles were assessed in the full-text screening. The articles primarily focused on technology acceptance and implementation, with a few addressing PROM development and guidelines.
Surprisingly, none of the studies met the inclusion criteria, highlighting a significant gap in the literature. This null-results review suggests that potential biases in PROM design may be overlooked factors influencing patient participation and data quality.
Discussion
The absence of evidence on PROM-specific factors influencing patient adherence raises important questions. One possible explanation is publication bias, where studies with non-significant results may not be published. Another explanation is that research on PROMs has historically focused more on implementation logistics rather than critically examining the instruments themselves.
This is intriguing, given the known presence of gender, racial, and sociodemographic biases in healthcare tools, including PROMs. While awareness is growing, more attention is needed to understand how PROMs' contextual assumptions may shape patient responses and engagement.
And this is the part most people miss: The structure and content of PROMs have only recently been recognized as variables with measurable impact on response rates, adherence, and equity. This oversight indicates a blind spot in PROM research, where the measure is often seen as a neutral tool rather than a potential influencer of patient engagement.
The review has limitations, including a 10-year time frame that may exclude relevant foundational work and specific inclusion criteria that could omit valuable insights from studies using different terminology and methods.
Implications and Future Research
Poor adherence to PRO assessments may be linked to psychological factors, as patients' perceptions and motivations play a role. Understanding these barriers can support the development of patient-centered PROMs and implementation strategies.
Addressing this research gap can empower patients and guide clinicians, developers, and policymakers in recognizing the importance of PROM design in patient engagement. It emphasizes the need to go beyond surface-level optimization and explore the functional dynamics of PROMs in clinical practice, where patient motivations and experiences significantly impact treatment outcomes.
Conclusion
This study reveals a critical gap in the literature regarding the impact of PROM design on patient adherence and response rates in routine clinical care. It suggests that inherent design elements of PROMs may contribute to nonresponse bias, particularly in their structure and content. Further research is needed to evaluate how PROM-specific characteristics influence their utility and integration into clinical workflows, ensuring value-based and patient-centered care in both research and routine practice.
