Putting patients at the helm of symptom management

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Cancer Care Ontario (CCO) is completing the Systemic Therapy Ambulatory Toxicity Management (AToM) Pilot which takes a patient-centred approach to improve how treatment-related toxicities are managed. Population-based studies within Ontario and in other jurisdictions have shown that a high percentage of patients who receive cytotoxic chemotherapy will visit the emergency department (ED) following their treatment, and are sometimes even hospitalized, due to toxicity. Earlier this year the Cancer System Quality Index reported that almost half of the patients who received adjuvant chemotherapy for early stage breast cancer in 2012 visited the ED during a course of treatment. Clearly, there is both room and need for ongoing improvements and AToM has been developed to improve the quality of care for patients receiving systemic treatment.

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A proactive, systematic and patient-centred approach

The AToM Pilot was initiated as a collaboration between CCO’s Systemic Treatment Program and Regional Cancer Programs. Developed by a multidisciplinary team that included physicians, nurses, pharmacists and a patient representative, and led by Dr. Monika Krzyzanowska, a medical oncologist and Clinical Lead for Quality Care & Access at CCO, the Pilot was designed to evaluate the effectiveness of a proactive, systematic approach to symptom assessment and management during chemotherapy using a patient-reported outcome measurement tool to capture toxicity from the patient perspective. “AToM empowers patients to actively be part of their own cancer treatment,” said Robin McLeod, VP, Clinical Programs and Quality Initiatives, “Through enabling patients to self-identify and document symptoms, this Pilot enables healthcare providers to better manage a patient’s symptoms and provide them with collaborative care.”

Enabling patients to report their own symptoms

AToM’s approach is unique because traditionally, in clinical trials and routine care, treatment-related toxicity has been reported by the patient to the provider who then records the toxicity type and severity. However, as reported in studies published over the last decade, there are systematic differences in toxicity-reporting depending on who is doing the reporting.   According to Dr. Krzyzanowska, “engaging the patient directly in reporting their symptoms, using a validated tool, ensures that symptoms that are relevant to the patient are addressed and it encourages self-management.” Significant interest in developing tools that enable patients to directly report on their toxicity themselves motivated the design of the NCI PRO-CTCAE – the National Cancer Institute’s Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events. The tool, being used by CCO in this Pilot, enables women with breast cancer undergoing adjuvant chemotherapy to manually report their own symptoms and document treatment toxicities.

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Coupling self-management with follow-up support

As part of the Pilot, at each chemotherapy appointment, patients are asked to complete the NCI PRO-CTCAE tool and are also asked to fill out a questionnaire detailing any additional problems they may be experiencing, including how they have handled these problems such as visits to ED or hospitalizations during the previous cycle of treatment. Once patients leave their cancer centre after receiving chemotherapy, they are contacted by phone twice by a nurse – first between 24 to 48 hours following chemotherapy and then again between eight to 10 days following chemotherapy – and the nurse works with the patient to complete the NCI PRO-CTCAE tool to identify symptom burden and make recommendations regarding their management.

Improving patient outcomes and quality of care

The AToM Pilot launched September 2013 at Sunnybrook, Thunder Bay & satellite sites in Northwest and currently, there are more than 70 patients enrolled. The feedback has been positive. Providers value this initiative as it provides additional support and a systematic approach to ensure the utmost quality of life for patients as they are going through treatment. “As a health care provider, a proactive symptom management approach such as this is highly valued,” said Dr. Gandhi, Medical Oncologist at Sunnybrook Odette Cancer Centre, “It allows more timely management of chemotherapy-related issues so the goal of safely and fully completing therapy can be achieved.   Clinic visits can be more productive and efficient, and the avoidance of emergency assessments can benefit not only patients, but the system at large. Ultimately, the patient experience through a vital time of the cancer journey can be optimized.” The Pilot is anticipated to finish by Spring 2015 at which point the results will be analyzed.