Learning you have prostate cancer can be very difficult. It adds stress, anxiety and worry about the future. It’s easy to get depressed.
“A cancer diagnosis can certainly be a life-changing event. In addition to the distress a diagnosis causes, patients have to make important treatment decisions that can impact their future quality of life,” said Michael Diefenbach, PhD, professor and director of behavioral research for Northwell’s Departments of Medicine and Urology, and member of the recently founded Center for Health Innovations and Outcomes Research. “There are a lot of questions patients have about sexual and urinary functioning.”
Finding credible answers can be challenging in the digital era. So, Dr. Diefenbach and his team are currently testing a new solution — Healium, a software program funded by the American Cancer Society that can help lead patients to a treatment option most in line with their personal preferences.
Dr. Diefenbach said Phase I of Healium’s trial began last summer with 20 patients enrolled. His team meets with patients an hour before their doctor’s visit to discuss treatment options and go through the Healium program. The goal is to help patients identify which aspects are most important to them with regard to treatment and their quality of life after treatment. Being able to identify these preferences before talking with their physician will help make appropriate treatment decisions.
“[Healium] not only informs patients about different treatment options, but more importantly helps them realize what is important to them. How the treatment they are choosing will impact their future quality of life,” Dr. Diefenbach said. “There are differences in how tolerant men are of their side effects.
“We have heard many times from patients that ‘I don’t care what it takes. I just want it out.’ The idea that they have cancer and that cancer might grow even very slowly, in their body is just not tolerable. They’re willing to take on any potential side effects. Others don’t want to be cut.”
In addition to active surveillance, careful observation of early stage prostate cancer, there are two main treatments for prostate cancer — surgery or radiation. Healium users are asked first whether they would prefer active surveillance or be treated now. After patients provide an answer, they are asked several “quality-of-life” questions relevant to their choice.
Patients receive a summary of their choice and they can either stop there, or start over by exploring a different option. Then the patient meets their physician to further discuss their options and preferences. To complete the evaluation, Dr. Diefenbach’s team follows up with participants six weeks later to obtain feedback about Healium’s usefulness.
“Eventually, during Phase II of the study, the physician will be informed about the patient’s quality of life preferences. The idea is that this might personalize the conversation between patient and physician, as the physician can refer to the patients’ preferences.” he said. “We hope this program increases patient satisfaction with the care they are receiving. The consultation might also be faster and less stressful.” So far, patient feedback has been very positive.
Healium wasn’t Dr. Diefenbach’s first experience with prostate cancer education tools. Twenty years ago — when he worked at Fox Chase Cancer Center in Philadelphia — he spearheaded the development of the prostate interactive education system.
“It started on a CD, prior to the Internet,” he said. “We had lots of videos and couldn’t put it on the Internet because people had dial-up connections. Once that technological hurdle was overcome, we developed the second version — Healing Choices for Prostate Cancer.”
A full-fledged program that included patient and physician testimonials, information about the treatment options and a virtual library, Healing Choices was the “all-encompassing, Rolls Royce of patient education,” Dr. Diefenbach said. The web-based program was tested nationally with 650 participants through the Cancer Information Service, a program sponsored by the National Cancer Institute.
“We found that, for certain sub-groups, our program really provided additional help, particularly for underserved men and those of color,” Dr. Diefenbach said. “That led us to develop a third generation program.”
“One of the most interesting lessons learned from the evaluation of Healing Choices was that we offered too much information. The team decided to streamline the information provided by focusing instead on how to elicit what is important to patients. The result of this research became the Healium program.”
Dr. Diefenbach’s previous experience helped direct the creation of the new software. His team, stationed at Northwell’s Center for Health Innovations and Outcomes Research, performed qualitative and formative research, held focus groups and discussed prostate cancer experiences with caregivers to determine what questions Healium could ask.
“We learned that decisions are not made in a vacuum,” he said. “Cancer is a family disease. The caregiver, spouse or trusted other is hugely influential. These decisions are often made on a family level.”
Healium was developed in 10 months with help from SourceTop, a software developer that has also worked with BRANY IRB, and can run on any operating system and platform.
“I see this as the prototype for a lot of decision-making types we encounter,” he said. “You could use the same model, for example, among women who have hormone therapy after breast cancer.
“No one else is using this. We have a personalized, tailored way of educating and helping patients make a treatment decision. We’re not taking anything away from the physician. We are preparing the patient in advance so they are better equipped to communicate.”
Among Dr. Diefenbach’s other research projects, he piloted a program with the National Cancer Institute that studies the quality of life impacts after prostate surgery. Some of the topics covered include wound care after surgery, becoming familiar with a catheter, dealing with incontinence and communicating needs effectively.
“We meet with the patient and their spouse prior to surgery and talk to them specifically about what to expect after surgery,” he said. “We also show them how to change the bag that is attached to the catheter. It’s a short conversation, but it’s important that both patient and spouse are both present. They can learn to support each other and to trouble shoot together if necessary.
“After surgery, patients have the catheter removed in seven to 10 days in the physician’s office. There they have to wait until they are able to void normally again. We’re using that period of time to introduce and inform the couple about changes the disease and treatment might bring in the future. Now that the treatment is over, we give them tips on how to focus on themselves, enhance communication and intimacy.
“We introduce the concept of being intimate without having sex. We tell them about different ways that can happen. We have developed a brochure with tips and follow up in month to see whether they have used any of our suggestions. The goal of the study is to see if this low-cost intervention can be used by nursing or clinic staff.”
Dr. Diefenbach anticipates 24 couples will be included in the study, which he hopes is finished this summer. If successful, he feels the intervention could be made available on the web and disseminated Northwell-wide.