For Alison Hamilton, the decision whether to start a family was one she struggled with.
Hamilton has cystic fibrosis (CF), a genetic disease that mainly affects the digestive system and lungs. The degree of CF severity, as well as additional complications, differs from person to person, but most patients experience reoccurring lung infections with thick and sticky secretions that are very difficult to expectorate.
“I didn’t know anyone with CF who had kids,” says Hamilton. “It was something my husband and I wanted to do, but we just didn’t know what to expect. I get emotional every time I talk about this, but if it wasn’t for the Cystic Fibrosis Clinic, I don’t think we would have had the confidence we did when starting a family. The care and support they provided me made me feel confident that I could handle it.”
Hamilton now has an adorable four-year-old daughter named Hailey.
Alison Hamilton and her daughter Hailey
The Saskatchewan Health Authority’s LiveWell Cystic Fibrosis Clinic is the only cystic fibrosis clinic for adults in Saskatchewan. The adult CF clinic has been in place for many years and has evolved over that time, taking a respected multidisciplinary team approach that patients have come to rely on.
“The clinic is very efficient,” says Hamilton. “Cystic fibrosis is a multidisciplinary disease, so when I’m here, I get to see the full team, all at once.”
The clinic, based out of Royal University Hospital in Saskatoon, consists of a respirologist, a nurse clinician, a pharmacist, a physiotherapist, a dietitian, a social worker and a psychiatrist.
Members of the SHA’s LiveWell Cystic Fibrosis Clinic team – From left to right: Mark Reynolds, Tracy Pytlowany, Val Larocque,
Rae Rivard, Niki Afseth, Dr. Julian Tam and Nora Jacek.
“CF can absolutely cause morbidity and mortality at a young age,” says Dr. Julian Tam, the clinic’s respirologist. “Yet care strategies, treatments and outcomes have improved over time, and we have statistics that show the majority of individuals with CF live into adulthood. As a team, we try our best to help our patients live as healthy and meaningful lives as possible in the midst of all their health challenges.”
And patients like Hamilton appreciate the individualized care strategies that the multidisciplinary team implements with each patient.
“When I was a kid, it was just a cookie-cutter approach – ‘Oh, you have CF, so you need these medications, we’re going to give you these tests, and you need to be on this diet,’ and so on,” she says. “Now the CF community and medical community are really putting the focus on the patient. They look at you as an individual and not just a generic person with CF. My care plan is much different than the next person’s plan, which makes sense because it’s not the same disease for everyone.”
“The multidisciplinary approach is what sets this program apart,” says Lois Crossman, manager of Chronic Disease Management with Saskatchewan Health Authority. “The patients come in to the clinic and can see all the team members, no matter what they are coming in for that day, so it provides that integrated and co-ordinated care based on best practice.”
“The focus on the multidisciplinary team approach is very different from when I first started my career,” says Val Larocque, pharmacist with the CF clinic. “To have that has been so fulfilling, because as you work with different care providers, you understand how to help each other to help the patient.”
For example, the order in which patients take some medications can be important for the effectiveness of their physiotherapy, and different aspects of their care and medication can impact their nutritional needs.
“I love having that interconnectedness and everyone working together to provide that ideal teaching opportunity for the patients so that they understand the importance of all the different aspects of their care,” notes Larocque.
Niki Afseth is the clinic’s nurse clinician and the main point person for all the patients between clinic visits. For her, the way the team is structured not only builds communication and trust within their team but with the patients, as well.
“We have long-term relationships with our patients,” she says. “The continuity of care is unparalleled. We’ve seen people through major life events – getting married, having children, and all those life transitions we get to be a part of. And everything changes, so that’s why for me, as a team, communication is key with the patient at the lead to make sure it works for them.”
In order to make sure that it does indeed work for the patients, the program has four clinics a month, on average.
“By increasing the number of clinics, we have bettered our care because patients are being monitored more frequently and becoming healthier because of it,” says Dr. Tam.
Before the patients even enter the clinic, they go for some standard tests, such as lung function testing. Those results are then sent to the team right away so they can review them before seeing the patient.
“One of the biggest things we stress is infection prevention and control. CF patients can grow challenging and resistant bugs in their lungs, so we try to minimize the spread of organisms,” explains Dr. Tam. “When they come to the clinic, they are each assigned their own room and then each of us gown and glove before going in to speak with each of them.”
For patients with CF, complications with their lungs are just part of having this complex disease.
“A fair amount of our CF patients also have CF-related diabetes, which is treated differently from Type 1 or Type 2 diabetes," explains Dr. Tam.
Rae Rivard is the team’s dietitian. “I come from chronic disease management so the other part of my job is helping patients with diabetes, and I think it’s a really good mix to be doing both,” she says. “Some of our patients have huge nutritional requirements and challenges when it comes to their nutrition, like poor appetites or low vitamin levels. So we work together to educate, empower and help our patients with a plan to overcome some of those barriers.”
In addition to nutrition, a focus on physical activity and physiotherapy is really important for CF patients. Mark Reynolds is the team’s physiotherapist, specializing in chest physiotherapy.
“I always wanted to be a chest physio and I gravitated to the CF clinic because I was doing chest physio for in-hospital patients and this was a direct transference of those skills to the patients in this clinic,” he explains.
Reynolds feels that his job is to help patients help themselves.
“I want to empower them to do their own exercises and be self-sufficient. So we focus on active exercises, where they are blowing and generating pressure because it helps clear and clean their lungs; that’s number one. Number two is being a coach and coaching them into activity. Exercise and CF go together, because the harder you breathe, the more you’re going to generate wind, and when you move air, you move secretions. Move the person – that’s the golden rule.”
While CF is an evolving disease, the health care issues of the CF patient population are evolving as well.
“Some of our older patients, I think, are from an era where they didn’t really expect to live past their twenties and now some of them are in their forties and fifties, which is amazing,” says Afseth. “But with that comes its own impacts and over the years we’ve seen increased mental health issues with our patients. There’s a lot of treatment burden and stress when dealing with a chronic illness and sometimes CF patients are dealing with more than one. On top of that, they’re trying to balance work with a social life and care requirements. It can be a lot to deal with.”
That’s why the team has a psychiatrist and social worker involved in the clinic to help with those struggles.
“Having a chronic disease is a burden and can lead to stress,” says clinic social worker Tracy Pytlowany. “Research tells us that anxiety and depression are common issues that arise in this part of the population. Social workers can provide support and link people to resources in their home community, making referrals to community supports as needed. We can also help patients with applications for disability, in case they need to take time off work due to illness, and offer support to both patients and their families during difficult times.”
Pytlowany believes firmly in the effectiveness of the team approach of this clinic.
“Seeing patients through life transitions is highly rewarding and allows you to build a relationship with the patient over time, something that’s not usually possible in an acute care environment,” she notes.
Helping CF patients find that balance and live a normal, productive life is what this team strives for.
“I think seeing a patient manage to balance their health as well as their personal goals is incredibly rewarding,” says Dr. Tam. “It’s just fantastic to see a patient achieve life milestones, whether it’s getting their dream job, getting married, or having a child, while still finding ways to follow through with their own treatment plans.”
And that balance is what Hamilton is striving for too. In addition to being a mom to Hailey – a very active little girl – Hamilton also works full time and volunteers with the Saskatchewan Health Authority as a patient and family advisor.
“Trying to keep healthy can be a challenge, given the evolution and escalation of the disease,” says Hamilton. “Just when you think you’re stable in one area, another thing hits you, so it’s helpful for me to just be able to come here, to this team, and know that I’ll be taken care of.”