Keeping care and family close to home
Eleven hours, 1,086 km and hundreds of dollars. That is how much the Kienapple family saves each time they participate in a telemedicine appointment with Dr. Guido Filler, paediatric nephrologist and Chief of Paediatrics at London Health Sciences Centre (LHSC).
Robert and Dominique Kienapple and their children Malcolm, Bronte and Parker live in Sturgeon Falls, located between North Bay and Sudbury in Northern Ontario, population 14,500. Their son Malcolm, 7, was diagnosed with nephrotic syndrome at 20 months.
Nephrotic syndrome is a kidney disorder that causes the body to excrete too much protein in the urine, while the protein in the blood drops. It typically presents itself through unusual swelling in the feet and ankles. Dominique noticed Malcolm had rapid weight gain, beyond what would be considered typical before a growth spurt.
“We had bought a pair of shoes for Malcolm and found two days later he could no longer fit into them,” says Dominique.
Nephrotic syndrome is caused by changes to the filters in the kidneys that normally prevent proteins from the blood to enter the urine. Often this condition responds to steroids, but in Malcolm's case, a genetic defect in the filter cells caused a serious form that required stronger and possibly life-long treatment.
This required a trip to Children’s Hospital at LHSC because there are no paediatric nephrologists in the region.
Their initial visit involved the long road trip to London and taking several days off work. Dominique was also eight months pregnant with Bronte.
“We spent close to a week at LHSC while Malcolm underwent tests and a biopsy to determine his diagnosis and treatment options,” says Robert. “When Malcolm was ready to be discharged, Dr. Filler said that we would need regular follow-up appointments to monitor his condition and treatment. He explained that we could have follow-up appointments through telemedicine.”
Dr. Filler, who has been using telemedicine since 1999, currently sees more than 60 patients through virtual appointments using the Ontario Telemedicine Network (OTN). Some of his patients are from fly in communities such as Pikangikum in Northwestern Ontario, others are in Windsor.
“Most of the benefits of telemedicine are for the patients and their families. There is less travel time, less cost, less lost wages and work hours, and they receive care closer to home which is a convenience,” says Dr. Filler.
For Malcolm’s appointments, a nurse in Sturgeon Falls first completes point-of-care testing such as blood pressure, weight and physicals as necessary, and has this information at hand at the start of the telemedicine appointment.
Dominique admits they were a bit uncertain about how telemedicine would work and whether the level of care would be comparable to seeing the doctor in person.
“However, the thought of not having to travel to London again for a little while was welcoming since we were expecting our second child in less than a month,” she says.
The first telemedicine appointment with Dr. Filler was held at their paediatrician’s office in Sudbury.
“We were immediately very pleased with the quality of the picture, sound and ease at which we could communicate, and our skepticism quickly turned to relief as we realized the benefits that this technology would bring to our family,” says Robert.
Most telemedicine stations also have a small portable camera with magnification. For example, Dr. Filler is able to use the camera to check for fine hair growth, which is a side effect of one of the medications.
“Sometimes these tools allow for a more detailed assessment when compared to the tools in a clinic,” says Dr. Filler.
The first few years after diagnosis, the family would drive to Sudbury for the telemedicine appointments, and Malcolm’s paediatrician would join in.
“The paediatrician would be in the room and could speak with Dr. Filler if she had any questions,” says Robert. “It was a huge benefit for us all, there is a definite advantage with everyone on the same page.”
Now Malcolm’s clinic visits are held at the Local Health Integration Network (LHIN) facility, which is two blocks from home and two blocks from work, so everyone in the family can attend the appointments. Indeed, Sturgeon Falls now boasts three OTN sites.
“The trip to London is a challenge for us for several reasons – the loss of work time, the travel costs, the reality of driving over 1000 km with young children, childcare for Malcolm’s younger siblings, the concerns about road safety especially in the winter months, and the overall impact of being away from home,” says Robert.
That is not to say that all of Malcolm’s appointments are through telemedicine. The Kienapple family has made three trips to London since the initial visit in 2010, however they also have the benefit of three to four OTN appointments a year.
“This allows Malcolm to be followed much more closely despite the distance to London,” says Dominique.
Robert concurs. “We are unbelievably happy with the level of service from Dr. Filler. We are in an isolated community and to have access to a paediatric nephrology specialist is incredible.
“We have found very few disadvantages to telemedicine. The main one is the pre-determined duration of the appointment. Although we were advised that the appointment was 30 minutes, we were a little surprised during our first visit when the call cut out while we were in mid-sentence,” says Robert.
With a telemedicine clinic visit, the time and duration of the appointment is booked with the Ontario Telemedicine Network, so the “air time” of the appointment is scheduled to the minute.
Most importantly, the Kienapples are able to live their family life without the major interruptions a several-day trip to London three or four times a year would bring for the family and for Malcolm as he goes to school, plays soccer and hockey, and takes up his new favorite sport of swimming.
“As a parent, the comfort of knowing that we can have regular visits and our son can get excellent care right where we live eliminates a great deal of our worry and stress about his well-being. For Malcolm this reduces the number of hospital visits and he is able to spend more time just being a seven-year-old,” says Robert.
“Malcolm has been picked and prodded since he was a very young child, so this telemedicine is routine for him,” says Dominique. “He is a typical active boy. He has a condition that we monitor, otherwise he is living his life as a normal seven year old.”