The diagnosis and management of cancer profoundly impact every aspect of a patient’s quality of life. Yet, despite its importance, quality of life (QoL) is not always a focus in cancer research and clinical trials. Perhaps this is due to the difficulty in accurately measuring something so inherently subjective and complex. While existing tools capture different aspects of QoL, no single tool covers every dimension. In addition, traditional clinical trials tend to emphasize physical well-being, underrepresenting psychological and social factors despite their importance for patients’ overall well-being. 

Given the challenges in capturing the full spectrum of QoL, Patient-Reported Outcome Measures (PROMs) provide a solution by allowing patients to share their direct experiences, including the physical, emotional, and social impacts of cancer and its treatment.  

PROMS – Giving Cancer Patients a Voice

Besides providing direct communication between patients and their healthcare providers, PROMs also give patients a higher level of autonomy when it comes to their healthcare. Treatment adjustments can be made based on these insights in order to align with patients’ personal goals, whether it’s prioritizing quality of life over survival or balancing symptom management with treatment efficacy. 

On a broader scale, PROM data can drive systemic improvements by offering concrete evidence of patients’ needs, which can inform policy changes, resource allocation, and advocacy for enhanced cancer support services. 

Challenges and Considerations in Implementing PROMs

There are several challenges and considerations to implementing PROMs in routine cancer care and research. 

Standardization and Validation: It is important to develop validated and standardized PROMs to accurately reflect cancer patients’ experiences. Quality of life is impacted by cancer types and disease stages differently, so disease or stage-specific PROMs are needed. PROM guidelines emphasize the need for comprehensive and robust measures to ensure their validity and reliability across a wide range of patient populations.1 

Complexity of Measurement: Capturing the multifaceted nature of quality of life, which includes physical, emotional, social, and psychological dimensions, requires comprehensive tools. This complexity can make it challenging to develop PROMs that are both thorough and easy for patients to complete. 

Integration into Clinical Practice: Incorporating PROMs into routine clinical workflows can be difficult due to time constraints, the need for training healthcare providers, and ensuring that the data collected is used effectively in patient care. 

Patient Burden: For PROMs to be successful, they must not be excessively burdensome for patients to complete. Long or complex questionnaires can lead to lower response rates and incomplete data. 

Cultural and Linguistic Adaptation: PROMs need to be culturally and linguistically adapted to be relevant and understandable for diverse patient populations.  

How Can Patient Advocates Overcome These Challenges? 

As a patient advocate, you have a unique role in improving cancer care.  You can help ensure that patient voices are heard and that quality of life is prioritized in cancer care. 

Here are some specific actions you can take: 

• Host Educational Sessions: Organize workshops, webinars, and support groups to educate other patients about PROMs and their importance. Share practical tips on how to complete these measures and discuss their benefits. 

• Public Speaking: Share your personal story and experiences at conferences, workshops, and community events to highlight the importance of PROMs. 

• Social Media Advocacy: Use social media platforms to raise awareness about PROMs and their benefits. Share informative posts, patient stories, and advocacy messages. 

• Create Resources: Develop easy-to-understand materials such as infographics, videos, and online content that explain PROMs and their role in cancer care. 

• Engage with Healthcare Providers:  Encourage healthcare facilities to implement pilot programs using PROMs and share success stories from institutions that have already benefited from PROM integration.  

• Policy Advocacy: When engaging with policymakers, present case studies or data showing how PROMs have improved patient outcomes and satisfaction in similar settings. 

• Collaborate with Researchers: Partner with academic institutions and research organizations to conduct studies using PROM data. This can help identify areas for improvement in cancer care. 

• Data Sharing: Advocate for the sharing of de-identified PROM data to facilitate broader research and quality improvement initiatives. 

The Future of PROMs in Cancer Care

As the development of more refined and targeted PROMs continues, the future of cancer care looks promising. With advancements in technology, digital health tools will make it easier to collect and analyze PROM data in real time, enabling more dynamic and responsive care.   

A key driver of this technological progress is artificial intelligence (AI). By streamlining data collection through adaptive questionnaires, improving data analysis with predictive algorithms, and enabling real-time patient health monitoring, AI will revolutionize how PROMs are used in healthcare. For instance, AI-powered tools like natural language processing (NLP) can analyze free-text responses, making PROMs more personalized and comprehensive. Predictive analytics will empower healthcare providers to anticipate and address declines in a patient’s quality of life, leading to quicker, more proactive interventions. Furthermore, AI will help reduce bias in interpreting PROM data and ensure that these tools are culturally and linguistically adapted for diverse populations. 

By fully integrating PROMs into standard practice, we can shift towards a more patient-centered approach to cancer treatment—one that values not just survival but also a meaningful quality of life. This patient-centered approach has the power to transform cancer care, ensuring that all aspects of the patient experience are considered, respected, and addressed, making cancer care more holistic and responsive to the needs of each individual.