Measuring Quality of Life Using Patient-Reported Outcomes in Real-World Metastatic Breast Cancer Patients: The Need for a Standardized Approach

Abstract

Metastatic breast cancer (MBC) patients are almost always treated to minimize the symptom burden, and to prolong life without a curative intent. Although the prognosis of MBC patients has improved in recent years, the median survival after diagnosis is still only 3 years. Therefore, the health-related quality of life (HRQoL) should play a leading role in making treatment decisions. Heterogeneity in questionnaires used to evaluate the HRQoL in MBC patients complicates the interpretability and comparability of patient-reported outcomes (PROs) globally. In this review, we aimed to provide an overview of PRO instruments used in real-world MBC patients and to discuss important issues in measuring HRQoL. Routinely collecting symptom information using PROs could enhance treatment evaluation and shared decision-making. Standardizing these measures might help to improve the implementation of PROs, and facilitates collecting and sharing data to establish valid comparisons in research. This is a prerequisite to learn about how they could impact the clinical care pathway. In addition, the prognostic value of intensified PRO collection throughout therapy on survival and disease progression is promising. Future perspectives in the field of PROs and MBC are described.

Patient reported outcomes in oncology: changing perspectives—a systematic review

“…Five main advantages related with cancer patients are consistently and actually presented in literature regarding PRO incorporation in daily clinical practice. They are: (1) stepped care models design reflecting patient’s disease pathway [ 4 , 5 , 31 , 32 , 34 , 36 – 57 ] (2) prognosis value [ 2 – 4 , 22 , 31 , 34 , 37 – 43 , 47 , 50 , 53 , 57 – 74 ] (3) communication improvements [ 4 , 5 , 10 , 22 , 31 , 32 , 34 , 36 , 38 , 40 – 43 , 46 – 50 , 53 , 55 , 65 – 69 , 71 – 82 ], (4) patient safety optimization [ 4 , 5 , 10 , 30 , 31 , 34 , 36 , 39 – 43 , 47 , 48 , 52 , 53 , 55 , 56 , 60 – 62 , 64 – 66 , 68 , 70 , 72 – 74 , 77 – 87 ] and (5) healthcare risk identification, i.e., unmet problems identification, symptom detection and symptom control [ 2 ,…”

“…Indeed, most studies reviewed the evidence that the communication processes in health systems are complex. PROs incorporation in oncology improves clinical practice [ 42 , 47 , 92 ], structures the communication, develops effective communication tools and communication skills training [ 93 – 95 ], and contributes to the delivery of effective oncology high-quality care [ 34 , 39 , 76 ], improved patient-safety and patient satisfaction, and reduces patient anxiety [ 39 , 42 , 48 , 49 , 65 – 67 , 77 , 88 ].…”

“…identified key areas of improvement and confirmed that well-conducted and reported prognostic model studies with a PRO predictor have great potential to improve healthcare delivery [ 38 ]. The physical functioning, global health and QoL domains were consider significant prognostic factors (prognosticators) and several domains have been evidenced [ 39 , 40 , 43 ] including patient-reported functional scores [ 37 , 42 , 60 , 61 , 63 , 68 ], patient-reported symptom interference [ 38 , 49 , 59 , 62 , 65 , 66 ], patient-reported depression [ 96 ], or patient-reported fatigue [ 67 , 69 ].…”

“…Stepped care models design based on PROs data collection can reflect the patient’ disease pathway, allowing the development of appropriate and sustainable long-term follow-up models for cancer survivors, foreseeing supported self-management and shared care (supportive care, epidemiological data, groups screening) [ 5 , 32 , 34 , 36 , 37 , 40 , 41 , 43 , 47 , 49 , 54 , 56 , 57 , 65 , 97 ]. Automated algorithms may support risk-stratified guideline-informed care [ 4 , 31 , 38 , 42 , 47 , 50 , 52 , 53 ].…”

“…The present study reports that PROs can capture patient’s essentials on disease pathway. They are crucial at baseline and follow-up stages and consistently consider them in research and clinical practice is a major concern for future in health systems [ 31 – 34 , 37 – 42 , 50 , 51 , 59 – 63 , 65 , 66 , 69 , 77 , 88 , 93 , 94 , 97 – 99 ].…”