Real Time Symptom Monitoring With Cancer Survivors

The use of computer adaptive tests with cancer survivors would minimize burden and help focus assessment. It has potential to sharpen measurement precision with a minimum number of questions255 and has several unique advantages: (1) compared to paper-and-pencil tests, computer adaptive testing technology is efficient, requiring fewer questions to arrive at an accurate estimate; (2) it allows respondents and providers to receive immediate feedback on the person's HRQL status; (3) with its IRT underpinnings, it allows users to communicate with one another in a common language and metric; (4) the problem of excessive floor or ceiling effects is greatly reduced (yielding scores that promote accurate selection and classification decisions and reducing respondent boredom or frustration); and (5) since computer adaptive testing automates test administration, scoring and recording, human error is eliminated.

As a result, self-report information can be viewed differently from all other data used in clinical practice. Further, a growing evidence base suggests that routine, formal assessment of patient-reported symptoms and health status may improve communication between patient and physician,213,256 satisfaction with care,257,258 and HRQL.259 Though studies are mixed, some research suggests benefit from routine assessment of HRQL in clinical practice including: (a) aiding detection of physical or psychosocial problems that otherwise might be overlooked, (b) monitoring disease and treatment, (c) allowing timely alterations in treatment, (d) facilitating patient-physician communication, and (e) improving the delivery of care.260-269 There is a need for future research on the applicability and clinical utility (i.e., improving specific outcomes) of such an approach.

At present such practice is rare, especially during survivorship, in part because HRQL measures have diverse scaling properties and require a high degree of sophistication to understand and appropriately interpret. Other barriers to the integration of HRQL data into clinical practice include: (1) physician misunderstanding of HRQL, including the belief that it cannot be measured reliably; (2) physician tendency to disregard subjective patient data in favor of objective data; and (3) time, effort, and cost required to accomplish valid assessment.149,216,270- 273 For these reasons, results from these assessments need to be presented in an efficient user friendly format that includes reference or normative data.274 In addition, results and interpretation of health status information must be delivered in a way that guides intervention.259,275

Quality of care and HRQL during survivorship may be improved by routine symptom and function monitoring used to trigger care management recommendations. Since computer adaptive testing enables brief-yet-precise measurement of clinically relevant symptoms and functional limitations in oncology practice, it can allow clinicians to monitor individual patients and detect small but important changes. Specific care recommendations can then be based on the level, or change in level, of a given symptom.

For example, completed and ongoing projects in our research lab utilize computer data processing and transaction services to telecommunication devices to collect weekly patient symptom and HRQL information. Patients with newly diagnosed or recurrent advanced lung cancer who are beginning any line chemotherapy telephone a computerized survey system weekly to complete a brief lung cancer-specific symptom index for 12 weeks, in addition to measures of HRQL and treatment satisfaction at baseline, 6 and 12 weeks. Results from a pilot trial support the use of computer and telephone technology as a means of collecting weekly data as well as the use of graphic reports as part of routine physician visits. A nurse monitors patient responses on the weekly symptom survey. The nurse contacts any patient who endorses any symptom severity as "very much" or "quite a bit" or reports a 2-point worsening from the previous week within 24 hours. The nurse verifies the accuracy of the report and either provides education or counseling (e.g., energy conservation, reminders on medication adherence) to the patient and/or calls the patient's physician for further consultation on symptom management (e.g., medication change, new diagnostic tests, office visit). In this way, the physician is engaged in active symptom management between clinic visits. Summary reports with graphic displays of cumulative symptom and HRQL information are generated (Figure 3), reviewed and discussed with patients at each physician visit, at which time patients also rate acceptability and satisfaction with



Not at all

1= A little bit


= somewhat

3 = Quite a bit


= Very much

1 2345 B78 9 10

Figure 3. Symptom Monitoring Summary Report.

the system, and patients and physicians rate the utility and understandability of the report.

Similar symptom monitoring could be applied to cancer survivor medical follow-up appointments, since computer adaptive tests are scored in real-time and results could be presented in graphic and/or written reports immediately to the physician and patient, enabling a focused discussion status and options.232,276 Patients have reported these discussions improve communication with providers213,256 and may encourage better care.277 This represents another area where improved surveillance may impact quality of care during survivorship and needs to be systematically investigated.

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