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In-home checkups anytime

Clinical study harnesses power of the Internet to ask 'more questions more often' in assessing quality of life for post-transplant patients
Nigel Bush
Dr. Nigel Bush has begun a study that uses an Internet-based tool to monitor the quality of life of recovering transplant patients on a daily basis. Photo by Gordon Todd

In-home Internet use eases the stress of shop- ping for busy parents, simplifies homework for high-school students and makes commu- nication with distant friends a snap.

Now, scientists in the Clinical Research Division think that the power of the Internet might improve follow-up assessment of cancer patients who have undergone bone-marrow and stem-cell transplants.

Drs. Nigel Bush and Gary Donaldson have begun a study that uses an Internet-based tool to monitor the quality of life of recovering transplant patients on a daily basis, far more frequently than the typical schedule of once or twice each year.

Because bone-marrow and stem-cell transplantation may cause numerous long-term effects on an individual's physical and emotional health, patients undergo many years of follow-up care through the Long Term Follow-Up program to assess both their disease-free progression and their quality of life post-transplant.

Predicting early onset

"Based on results from our own past studies here at the Hutch, we believe that quality-of- life measures may be sensitive to subsequent clinical events such as disease relapse," said Bush, who developed the Internet site. Our hope is that by measuring quality of life more often, we can predict early onset of problems."

The group initiated the study, which has an enrollment goal of 300 patients, to alleviate some of the challenges associated with in-home measurements of quality of life. Such monitoring is typically conducted with mailed questionnaires.

"As our research has progressed, we've wanted to include more questions more often," Bush said. "But as our questionnaires have become longer, we can only expect patients to complete them a few times each year. That means we might get a very detailed picture from them twice a year, but we get nothing in between.

"Our new methods allow us to combine a few questions from a larger questionnaire pool each day, and to combine the data over time to yield more detailed and complete quality-of-life measurement."

The researchers hope that the ease of participation will encourage regular use of the Internet-based tool, ultimately enabling doctors and nurses to provide earlier intervention at the first sign of problems. Thus far, the system has received enthusiastic support from participating patients.

Patients eligible to participate in the study, which has just enrolled its first 30 participants, are adults who have just finished inpatient care after transplant and have home Internet access.

Those who wish to join the project sign informed-consent documents explaining details of the study, are given a hands-on tutorial to get them started, and are provided with access to the secure Internet site. Patients are asked to commit to the study for one year, although they are free to continue for a longer time.

Five questions for each logon

Each day, or as frequently as they choose, participants can log onto the site, where they will be asked five questions about either their quality of life or their physical symptoms. The questions are selected automatically by the system from a pool of 38 total questions and changed each day.

Patients also have the option of completing a symptom checklist, with which they can report any unusual medical issues over the previous 24 hours. Once each month, patients answer a larger set of online questionnaires.

Other staff involved in the four-year study, funded by the National Cancer Institute, include Dr. Carol Moinpour, an investigator in the Southwest Oncology Group, Donna Milliken, a systems analyst in the Clinical Research Division, Vivian Markle, a research nurse at the Seattle Cancer Care Alliance, and Regan Hollady, project coordinator.


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