Supportive care research

At Children’s of Minnesota, we focus on research that seeks to improve the day-to-day quality of life for children and teens. This is called supportive care research. It is important to minimize symptoms that can occur due to illness and/or treatment so the patient can continue to do the “work of childhood” including playing, going to school, being with friends, and developing their bodies and minds. Minimizing effects of chemotherapy through physical therapy.

Minimizing effects of chemotherapy through physical therapy
Lynn Tanner, PT, a physical therapist in the Oncology Program, has developed new and creative physical therapy interventions, called the Stoplight Program, for children undergoing treatment for acute lymphocytic leukemia (ALL). During treatment for ALL we know children can be challenged by changes in the nerves and muscles from the chemotherapy. These physical therapy treatments aim to prevent or minimize these side effects. We have collected information about the results or outcomes for those who have completed the Stoplight Program and share this information with other cancer treatment centers around the world.

Physical function in children undergoing cancer treatment
Laura Gilchrist, PT, PhD, has dedicated her career to finding new ways to improve physical function in children undergoing cancer treatment. With Tanner, she is exploring ways to measure and treat chemotherapy-induced damage to the peripheral nerves in the hands and feet. While this issue is well described in adults, Gilchrist is developing a measurement tool specifically for use in children to determine which changes in nerve function are permanent, with the goal of preventing such damage. This tool will not only help Children’s patients, but will be utilized by health care providers and researchers across the country to more precisely evaluate this treatment-related side effect. This is the first step in her quest to create a new model that integrates physical status into the care of cancer patients.

In a second study led by Dr. Gilchrist, children at the end of cancer treatment are being evaluated for balance, endurance, strength, posture, and walking mechanics. She is using a state-of-the-art computerized walkway system to collect information on changes in walking mechanics. Potential deficits such as decreased step length, foot drop, and changes in gait pattern are measured using this novel device. Research outcomes will potentially help children maintain motor development during treatment and prevent chronic late effects, such as obesity and decreased bone mineral density.

Improving fatigue and related symptoms
Fatigue is one of the most prevalent and distressing symptoms reported by children with cancer. Cancer treatment can last from a few months for up to three years.   Therefore it is important to manage fatigue symptoms during cancer treatment so the child has less distress and more energy for engaging in the normal activities of childhood that are vital to ongoing development.

Casey Hooke, APRN, CNS, and her colleagues are currently evaluating whether yoga will reduce fatigue and sleep disturbance symptoms and improve balance in children and teens during and after cancer treatment. This study builds on research conducted in adults that showed cancer survivors who participated in a six-week yoga course had improved symptoms and quality of life.

In a second study Dr. Hooke and her team are evaluating a small, cost-effective device called the FitBit to see if it helps to increase activity levels in children receiving cancer treatment. The FitBit measures motion and provides daily feedback to the wearer. Children with ALL who are receiving maintenance chemotherapy will wear the FitBit for two weeks. Goals will be set with the patient to increase the steps walked each day and use the FitBit to give daily feedback on the number of steps walked and their level of activity. We will evaluate if the FitBit helps patients to be more active, and if patients who increase their activity have less of an increase in fatigue when steroid medications are part of their treatment, which often increase fatigue symptoms.

Green Light to Recovery: A team approach to care in the PICU after surgery for a brain or spinal cord tumor
Children and teens hospitalized in the pediatric intensive care unit (PICU) after surgery for a brain or spinal cord tumor are at risk for problems with muscle and nerve function. Lack of activity and muscle weakness that occur from immobility common in ICU patients can intensify these challenges. A proactive approach to self-care and rehabilitation provides many benefits. Evidence shows early ambulation (walking) and rehabilitation, removal of central lines and catheters, and decreasing sedation medications can reduce common complications (Warren, Platt, Thomas, et al.,1978; Jeffries, Mason, Brewer, et al., 2009; Needham, Korupolu, Zanni, et al., 2010; Yu, 2010).

At Children’s, a multidisciplinary team developed a comprehensive program to address the risks and promote wellness during this recovery period. The team, lead by Linda Madsen, CNP, includes expert rehabilitation therapists, nurses, child-life specialists, neuro-surgery, intensive care and neuro-oncology providers. The guidelines are designed to improve patient outcomes (results), minimize complications and prevent further disabilities.

The program goal is to support recovery as fully and quickly as possible while at Children’s Hospital, with a focus on early and ongoing rehabilitation, prevention of infection and constipation, optimal nutrition and restful sleep.

Rehabilitation services are essential for recovery and a priority in daily routines. Research shows an early increase in activity after surgery decreases complications and promotes recovery. Rehabilitation begins very soon after surgery. Because early movement can be uncomfortable, pain medications are used as needed to facilitate these sessions. Therapists work with each child, nursing and the family to teach exercises and activities to promote recovery. The frequency of the visits is geared for the individual child’s needs.

Physical therapists help the child:

  • move in bed, sit, stand and walk/crawl
  • work on flexibility, strength, large muscle skills and balance

Occupational therapists help the child regain:

  • self-care activities such as brushing teeth, eating, and dressing
  • use of hands and coordination, as well as how they think and learn

Speech therapists help the child:

  • talk and understand what is spoken
  • work with memory, thinking and problem solving
  • address feeding challenges

Nurses help the child: 

  • balance rest and activity
  • provide pain management
  • support the rehabilitation plan
  • encourage movement and self care goals

Nutrition/Elimination is maintained by returning to normal eating as soon as possible after surgery. Nutrition is vital for the body to recover.

  • eat and drink by mouth as soon as possible, a temporary feeding tube is placed if needed.
  • change medicines from IV methods to by mouth/tube when the child starts eating to prevent IV infections.
  • prevent constipation by using daily laxative medications and the toilet or bedside commode within a day of surgery.
  • urinate normally without the help of a catheter within a day or two of surgery whenever possible.

Sleep, rest and optimal restorative sleep are balanced with periods of activity and daily routines. During rest and at night, interruptions, visitors, noise, light and stimulation are minimized.

Daily hygiene is essential because the mouth is a source of germs that can travel to other parts of the body.

  • tooth brushing twice daily significantly decreases the risk of infection in the lungs and the blood
  • routine bathing assists in recovery and sense of well-being

The family role:

  • participate and encourage adequate activity and periods of rest
  • support the schedule and work on daily goals
  • encourage self-care – don’t do for them if they can do for themselves
  • encourage nutritious foods
  • learn from therapists and work with your child between rehab sessions

Outcomes (results) in the following areas are monitored and compared before and after the program starts:

  • oral hygiene practices
  • removal of intravenous line and catheters
  • decrease dosage and discontinuation of steroid medications
  • switching medications from Intravenous to oral ( by mouth) methods
  • prevention and early management of high blood sugar (hyperglycemia)
  • promoting nutrition
  • scheduled laxative regime
  • rehabilitation activities beginning within 24 hours of admission to the PICU