Mesothelioma patients may soon be able to play a larger role in determining their treatment while battling their cancer. Thanks to a new initiative from Johns Hopkins University, a patient-reported outcome (PRO) survey will allow patients to report physical, social and emotional symptoms and needs. The information will be evaluated and tracked over time by their medical team to help make treatment decisions.
Mesothelioma, a rare, incurable cancer caused by asbestos, is difficult to treat. The treatment regimen most often involves surgery, chemotherapy and radiation. With such an arduous treatment plan, patients are faced with debilitating side effects, pain, emotional stress and sometimes feelings of depression and loneliness. Through Johns Hopkins' new PRO system, oncologists can request that their patients complete a questionnaire denoting their symptoms and needs, and the doctors can then use the information to confer with other physicians for recommendations for treatment.
For the last six years an "international multidisciplinary team" of researchers and practitioners, led by Johns Hopkins University researchers, have focused on creating PatientViewpoint.org, a patient portal that allows physicians to order a patient survey as if it were a test. This PRO system is unique in that the information is used for research as well as to evaluate the effectiveness of the treatment the patient is receiving.
The system includes consensus-developed recommendations that were selected from extensive interviews with medical oncologists, radiation oncologists, nurses, an internist, a palliative care specialist, an outcomes researcher, a chaplain, a social worker, and patient advocates. According to the article outlining the system in The Journal of Supportive Oncology, treatment suggestions offered range from medication adjustments to lifestyle modifications to referrals to other disciplines. The recommendations are not cancer specific, but are designed to address issues common to all cancers.
The recommendations for emotional function, as identified in the report, include the following:
- Perform a full assessment, including underlying cause(s), severity, source of distress, and its impact on QOL [quality of life]
- Identify and evaluate coping strategies and support systems
- Express empathy and listen actively to patients and families
- Educate patient about disease and treatment processes and realistic expectations
- Appropriate psychosocial counseling for patient and/or their families; refer to social work, psych liaison, chaplain
- Suggest psycho-education materials, online support groups, buddy/partner opportunities, or Web sites
The web-based PatientViewpoint allows instant access to the information, and it links directly with the patient's electronic medical records. This provides the doctor with an immediate view of the patient's needs, and allows both the doctor and the patient to follow the progress and to review the treatment history at any time.
"In the future, this sort of system will become part of the standard of care for collecting data," said Dr. Albert W. Wu, co-author of the report. "This will allow doctors and the health care system to make the best decisions for patients and make sure they do as well as they possibly can."
The system is currently being tested for the treatment of breast and prostate cancer patients. The team anticipates the recommendations will evolve slightly as more types of cancers are used with PatientViewpoint.
