Patient-Focused Cancer Care Outcomes

A research team led by Dr. Doris Howell has undertaken a scoping review and extensive consultation process to identify patient-focused outcomes for inclusion in a core patient-reported measurement system for use nation-wide in Canada.

With an estimated 171,000 new cases and 75,300 estimated deaths in Canada in 2009, cancer continues to be the leading cause of premature deaths. Although, significant advances have been made in the treatment of cancer with improvement in survival patients report difficulty accessing the information and resources they need to minimize the adverse physical and psychosocial consequences of cancer.

Patient-focused outcomes are defined as those that matter to the patient and include physical, emotional, and social health and related dimensions such as effective coping, sexual health, and financial burden and are usually measured. The use of patient-focused outcomes in routine practice requires acceptance by clinicians, patients, and administrators; timely communication among cancer care providers; efficient data collection, analysis, and reporting; and resources for responding to identified patient problems.

Cancer survivors were included on the advisory panel to help guide the research process and allow the researchers to begin to understand what is important to the cancer patient as they navigate through the trajectory of the illness. The domains identified were

1. Physical health including relevant dimensions such as physical function, symptoms, sexual function, sleep and wake disturbance, nutritional status, and cognitive function
2. Emotional health including emotional distress (anxiety and depression) and psychological adjustment (coping, body image, self-concept, meaning and spirituality, and subjective well-being)
3. Social health including social function and support, as well as social costs; and
4. Quality of life

Attached is a brief executive summary, Patient-Focused Cancer Care Outcomes: A Core Set of Validated Patient-Reported Measures for Canada, detailing the study and its recommendations.

Recommendations are outlined in the attached summary:

1: Performance evaluation in the cancer system should include measures that assess outcomes from a whole-person, patient-focused perspective, and are self-reported by the patient or caregivers.

2: The routine use of patient-focused outcomes requires widespread acceptance by clinicians, patients, and administrators. We must increase awareness of the need for development and implementation of routine and standardized patient-reported outcomes measurement among researchers, clinicians, and patients.

3: In the development of a patient-focused cancer care measurement outcomes system, we should leverage patient involvement to identify the outcomes that are real and relevant to patients and their caregivers; develop key indicators that make sense to a wide range of patients; and support patient empowerment and systems to support self-management.

4: Patient-focused outcomes measurement should be culturally and geographically relevant across all cancer populations to address the highly diverse needs of the Canadian cancer patients, survivors, and their significant others.

5: Routine assessment of patient-focused outcomes should be coordinated, continuous, comprehensive, and integrated in care delivery to avoid patient and clinician burden.

6: An outcomes measurement system should be electronically implemented to ensure real-time relay of information among health-care professionals and decrease burden for patients. Modern measurement approaches such as Item Response Theory (IRT) modeling can provide significant opportunities to improve rigor and efficiency of electronic patient-reported data collection and analysis. IRT allows the development of “item banks” to facilitate measurement via Computer-adaptive testing (CAT) via a computer.

7: To improve utilization of patient-focused outcomes at the point of clinical contact outcomes measurement should be feasible and provide clear and interpretable data to the clinician and the patient. An outcomes measurement evaluation system implemented electronically has the potential to increase patient response rates, decrease the time taken to complete questionnaires, and most importantly greatly improve the translation of information between health-care professionals.

8: Valid, reliable, and responsive patient-focused outcomes measures grounded in theoretical foundations are needed to address the specific concerns of cancer patients across the entire continuum of the disease with instruments developed to evaluate phase-specific outcomes. We need tools that accurately, feasibly, and reliably capture the patient experience of cancer and are content valid for comparison across various populations, studies, and timeframes.

9: A systematic process needs to be developed for the reporting, sharing, and storing of patient information to maintain patient confidentiality and dignity. This process should allow for linkages with other cancer registry data sources.

10: Patient-focused outcomes should be used to evaluate patient experiences with health- care which can ultimately be utilized to improve the quality of cancer care and system planning.

11: The area of social costs, subjective well-being, and self-efficacy were flagged by the advisory panel as meaningful outcomes. These outcomes, as well as patient-family experience with care processes and safety outcomes need further exploration. As the evidence builds, future work should focus on identifying the relevance and feasibility of assessing these outcomes as part of a core outcomes measurement system to improve quality of clinical care.

Further information on this landmark project can be obtained by contacting the principal investigator, Dr. Doris Howell (doris.howell@uhn.on.ca), or the research coordinator Tala Chulak (tchulak@uhnresearch.ca).