Patient reported outcome measures in the treatment of colorectal cancer – understanding importance and implementation into practice

Colorectal cancer (CRC) remains the third most commonly diagnosed malignancy in Australia.1 Advances in treatment have resulted in increased survival, but how these treatments impact patients' quality of life (QoL) is still unclear.2 Patient Reported Outcome Measures (PROMs) are tools that can help guide patient-centred care and shared decision making.3 While they provide valuable insight into patients' perspectives, the implementation of PROMs into treatment algorithms comes with its own challenges.3 With the shift toward personalized healthcare, there has been increased appreciation for the importance of PROMs.4 PROMs are standardized tools or questionnaires that enable patients to report their symptoms and experiences, covering a broad range of topics, including physical wellbeing, psychological wellbeing, social functioning, and symptom burden.3 While PROMs focus on healthcare outcomes, Patient Reported Experience Measures (PREMs) focus on patients' experiences with healthcare services.5 PREMs assess patient satisfaction of the service provided, covering communication, care, and logistics, such as clinic wait times.5 There is understandably overlap between PROMs and PREMs as both aim to capture patients' lived experience. PROMs can be generic or disease-specific. Generic PROMs provide a broad overview of patient health. For example, the EuroQol-5 Dimension (EQ-5D) and the European Organization for the Research and Treatment of Cancer Quality of Life Questionnaire Core-30 (EORTC-QLQ-C30) are two of the most common generic PROMs used in CRC.3, 6 Both assess patient mobility, self-care, usual activities, pain, and the presence of anxiety or depression.3 Disease-specific PROMs contain domains relevant to specific patient populations, providing an overview of the impact of both pathology and treatment on patients.3 For CRC, the Functional Assessment of Cancer Therapy-Colorectal (FACT-C) and the EORTC-QLQ Colorectal Cancer Module 29 (EORTC-QLQ-CR29) have been extensively validated.3 Presented in a Likert scale, FACT-C covers generic domains of physical, emotional, social, and functional wellbeing, in addition to 9 colorectal-specific items including bowel habits, cramping, appetite, stoma care, and patients' attitudes toward their stoma.6 In comparison, EORTC-QLQ-CR29 is a supplementary module to be delivered alongside the generic EORTC-QLQ-C30.6 EORTC-QLQ-CR29 contains 29 items, graded on a Likert scale, covering topics such as urinary and bowel habits, sexual function, perception of health, and stoma management.6 PROMs can help with shared decision making by guiding discussions with patients on the potential challenges of treatment.6 These may include the physical and functional impacts of CRC surgery, the expected trajectory of their recovery, and the potential adverse effects of chemotherapy.2 This is particularly useful in conversations with high-risk patients and can help frame treatment discussions. Numerous studies have quantified chemotherapy toxicity effects on patients, including gastrointestinal upset, immune suppression, and peripheral neuropathy.7 In the 2004 MOSAIC trial, 92% of patients experienced peripheral neuropathy during treatment, with 76% reporting symptoms 18 months post-treatment.7 Additionally, patients' symptoms can be missed or underappreciated by clinicians in up to half of cases.3 PROMs provide an alternative avenue for patients to voice their symptoms and are particularly useful in highlighting trends over time,3 enabling clinicians to promptly intervene. For example, PROMs have been shown to help with distress identification, stomal therapy issues as well as focus discussions on sensitive topics, such as sexual function or financial burden.3, 4 Despite their perceived importance,4 limited experience in their utility in CRC still exists within Australia. PROMs have primarily been utilized within clinical trials to assess treatment benefits, where they have been shown to improve the quality of reporting on patient-reported outcomes compared to other outcome measures.4 Finally, the implementation of PROMs has an impact on overall patient care. In their randomized controlled trial monitoring symptoms of 766 patients undergoing cancer treatment, Basch et al. found that health-related QoL measurements improved in those who regularly completed PROMs as part of their routine cancer treatment, compared to those who did not, and reduced the need for emergency room visits, improved chemotherapy compliance, and quality-adjusted survival.4 Australia has a diverse population, with a wide range of literacy proficiency. PROMs such as EORTC-QLQ-CR29 and FACT-C have been validated in numerous languages6 but patient participation has been shown to be a major challenge. In some studies, the patient response rate was as low as 36%, leading to large volumes of missing data.2 PROMs can be delivered via different modalities, including paper, electronic, or SMS.3 The challenge is developing and incorporating software that can automatically send PROMs to patients in a time-appropriate manner based on their journey, as well as being able to store and interpret results that have meaning.3 In addition, many patients from lower socioeconomic groups may not have available devices to access digital PROMs platforms. There may be considerable burden on both clinicians and patients with routine PROMs collection.3 Integrating PROMs into existing clinical workflows can be challenging, especially if clinicians feel that it adds extra time to already busy schedules.6 The time and ownership placed on patients to complete PROMs is another barrier,3 in particular during high-intensity visits for chemotherapy treatment when some patients may be too unwell to engage sufficiently. PROMs data must be ideally translated into actionable outcomes. While it is clear that PROMs are beneficial in treatment review and planning, there is a gap in the literature on the exact processes clinicians use to implement PROMS data into care.3 Further research is required to define these pathways, develop education plans, and produce guidelines. Understandably, there is also a financial burden with incorporating PROMS into clinical care.3 While PROMs have been suggested to positively impact health outcomes, there have been limited studies that analyze the cost–benefit of PROMs implementation.4 Integration into electronic medical record systems and training may not be readily available with existing public hospital resources. Increasing appreciation of quality of life in patients with colorectal cancer will help lead to better clinical outcomes. However, several barriers still exist which limit the routine implementation of PROMs into clinical practice. Further work needs to be done to see how PROMs can be delivered to all patients in a simple and cost-effective manner. Open access publishing facilitated by The University of Melbourne, as part of the Wiley - The University of Melbourne agreement via the Council of Australian University Librarians.