Beyond Study: Exploring well-being in the Canadian childhood cancer community

The COVID-19 pandemic has created striking and co-occurring challenges to the health and wellness of Canadian children and their families. Although the impacts of the pandemic are widespread, the COVID-19 pandemic may have put children with and survivors of childhood cancer and their family caregivers at increased risk of negative psychosocial health outcomes.

The Beyond Study aims to better understand the impact of the COVID-19 pandemic on the well-being of the Canadian childhood cancer community during the pandemic and beyond.

With this initiative led by researchers at Concordia University and SickKids Hospital, we also want to learn more about patients’, survivors’, and parents’ psychosocial support needs, including during the pandemic.

Who can participate?

  1. Canadian youth (younger than 18 years old) who are currently receiving cancer treatment
  2. Canadian youth (younger than 18 years old) who have received cancer treatment in the past
  3. Their parents and caregivers
  4. Bereaved parents who have lost their child (younger than 18 years old) to cancer

What will you be asked to do?

If you decide to sign up, you will be asked to

  1. Complete a short online survey (15-20 minutes)
  2. Have the option to complete a virtual interview with the research team (30-45 minutes)

Interested in this study?

Email us or fill out this sign-up form to learn more about the study and to participate.

 


Sexual and Reproductive Health

Reproductive and Sexual Health Care and Outcomes of Adolescent and Young Adult (AYA) Cancer Patients 

Were You Diagnosed with Cancer Between the Ages of 15-39?

Researchers at the University of British Columbia are conducting focus group research with AYA cancer patients from diverse backgrounds about experiences with sexual and reproductive health.

ELIGIBILITY CRITERIA

  1. 18 years old or over 
  2. Were diagnosed with cancer between 15 to 39 years old, inclusive
  3. Reside in Canada
  4. Can communicate in English

Interested in participating or learning more? Contact the study coordinator.

Compensation will be offered!

Scan here for the consent form and survey!


Pain Management Skills for Survivors of Childhood Cancer

Researchers at Alberta Children’s Hospital are conducting a study to see if survivors of childhood cancer living with chronic pain find an online self-guided pain management program helpful for managing their pain.

We are looking for youth who

  1. Are ages 10 to 17  
  2. Have a history of cancer, and 
  3. Have chronic pain that gets in the way of things they want to do.

Participants will spend about 30 minutes per week for eight weeks on this online program and then answer some questions about what they liked and did not like about the program, and if they found it helpful. Survivors can receive up to $75 for participating.

Please email the study coordinator for more information.


Understanding Children’s Experiences of Serious Illness

Researchers from the University of Calgary are looking to recruit children ages 7 to 18 who have been living with a serious illness for more than one month. Participation will include an hour-long interview where art will be created to help with expression. 
 
If you are interested or wish to learn more about the research study, email Kate Wong.

Adolescents and Young Adults becoming Physically Active after Cancer Trial

Investigators from the Canadian Institute of Health Research, University of Calgary, University of Alberta and Alberta Health Services are examining if a home-based, mobile health intervention can increase physical activity levels by 120 minutes per week among adolescents and young adult (AYA) cancer survivors. The findings will help us improve care and outcomes for AYA cancer survivors.

Eligibility Criteria

  • Live in Alberta;
  • Diagnosed with a first cancer between 15 and 39 years of age in Alberta;
  • Within one year of completing active treatment; and
  • Complete <5 hours of exercise per week.

To learn more about the study and what’s involved, visit the study website at ayapact.com.


Seeking Survivors of Acute Lymphoblastic Leukemia / Solid Tumours

Seeking survivors of acute lymphoblastic leukemia (ALL)/solid tumors:

  • ≥ 2 years treatment OR ≥ 5 from diagnosis;
  • Are 8 to 17 years old;
  • Are able to speak and read english; and
  • Have a parent/caregiver willing to answer some questions.

Fill out the eligibility survey here.


Creating a National mHealth Aftercare Strategy for Survivors of Childhood Cancer

Treatment for childhood cancer can lead to serious medical conditions later in life. Appropriate follow-up care is critical for survivors of childhood cancer. Researchers at the University of Calgary would like to understand the barriers and enablers to receiving appropriate follow-up care for survivors of childhood cancer. This information will guide the development of a Canada-wide childhood cancer survivor patient platform.

We are asking eligible participants to complete an online questionnaire that will take about 15-20 minutes to complete. Participation in this study is completely voluntary and you may withdraw from the study at any time. We may also ask you to participate in a 1.5 to 2-hour focus group with other survivors of childhood cancer or healthcare providers.

Survivors are eligible to participate if:

  • You are currently between 18 and 39 years old
  • You were diagnosed with cancer before 21 years old
  • You were diagnosed at least 5 years ago and/or completed treatment at least 2 years ago

Healthcare Providers (e.g., oncologists, general practitioners, advanced practice nurses) are eligible to participate if:

  • You provide care to survivors of childhood cancer
  • You have more than 5 years of experience as a health care professional

If you have any questions, please contact the research team at care4kids@ucalgary.ca.

Please click here to learn if you are eligible for the study.


Cancer Worry Study

Dr. Fiona Schulte and her research team at the University of Calgary are seeking childhood cancer survivors to participate in small, virtual focus groups to share their experiences with worry about cancer returning. Participants will receive a $10 gift card.

Eligible participants must:

  • Have been diagnosed between ages 0 to 18
  • Have completed active treatment
  • Currently be between 8 and 18 years of age
  • Live in Canada or the USA

For more information or to participate visit the Cancer Worry Study or email the study administrator.


Compassion for Children, Parents/Guardians and Health Care Providers

Despite its reputed centrality to healthcare, compassion remains ill-defined, being conceptualized as an attitude, feeling, trait or state that arises in witnessing the suffering of another. Although compassion has been well conceptualized in the adult cancer population, its importance, meaning and impact in pediatric cancer (8-<18 years) populations has not been studied. This study is being done by the Compassion Research Lab, Faculty of Nursing, at the University of Calgary. The team is looking for the following participants to take part in a one-hour interview, either face-to-face or online through Skype:

Pediatric patients

  1. Between the ages of eight to eighteen years old.
  2. Have been living with a cancer diagnosis for at least three months.
  3. Able to speak and understand English. 
  4. Willing and able to participate in a face to face or Skype interview (60 mins)

Parents/Guardians (P/G)

  1. Parents or guardians of a child (18 years and younger) who is living with a cancer diagnosis.
  2. Are actively involved in decision-making regarding their child’s healthcare needs.
  3. Able to speak and understand English.
  4. Willing and able to participate in a face-to-face or Skype interview.

All participats will receive a $20.00 gift card to either Starbucks, Toys R Us, and Chapter/Indigo.

If you and/or your child would like to participate in the study, please contact the Project Coordinator, Priya Jaggi at 403-220-7894 or parneetpriya.jaggi@ucalgary.ca. The Principal Investigator for this study is Dr. Shane Sinclair.

This study is funded by the C17 Research Network and the Faculty of Nursing Bridge Funding.

This study has been approved by the Health Research Ethics Board of Alberta (HREBA.CC-18-0174), and has received administrative approval.


The MATCH Study

As more people survive cancer, the importance of research on effective interventions for improving quality of life amongst survivors is growing. Two interventions with a substantial evidence-base are Mindfulness-Based Cancer Recovery (MBCR) and Tai chi/Qigong (TCQ). However, these interventions have never been directly compared and they may help cancer patients in different ways.

MBCR focuses primarily on the challenges faced by people living with cancer. Different forms of meditation are introduced, beginning with a body scan and sensory awareness experience and progressing to sitting and walking meditations over the course of the program. Gentle Hatha yoga is incorporated throughout, as a form of moving meditation. Facilitator instruction, group discussion and reflection, problem solving, and skillful inquiry are also used.

Tai chi involves a series of slow specific movements or “forms” done in a meditative fashion to bring about a state of mental calm and clarity. Qigong exercises generally have three components: a posture (moving or stationary), breathing techniques, and mental focus on guiding chi/qi through the body. TCQ incorporates simple Tai Chi elements within a healing framework stemming from Qigong principles.

In order to participate you must:

  • Be over the age of 18
  • Have been diagnosed with any type of cancer (stage I-III) except brain
  • Have completed active treatment (i.e. surgery, chemotherapy, radiation therapy) at least 4 months previously (ongoing hormonal therapies, AIs, tamoxifen, herceptin does not preclude)
  • Be able to attend classes at scheduled times
  • Have sufficient functional capacity to participate (judged by PAR-Q questionnaire, study staff, participant and participant’s physician)
  • Be able to speak, read, and write English sufficiently to participate in all activities.

You are unable to participate if you are experiencing any of the following:

  • Your cancer is metastatic or you are currently on chemotherapy.
  • You currently engage in meditation or tai chi one or more times per week
  • You have participated in the MBCR program in the past.

What is required of participants?

  • Indicate whether you have a strong preference for taking either mindfulness or tai chi/qigoing classes. If you have a preference you will get the group that you want. If you don’t have a preference, we will assign you to one or the other randomly, like the flip of a coin
  • Once you are assigned to a group, you will either start within a week or two, or wait three-four months to start – we will tell you how long you are assigned to wait.
  • Before the group sessions begin, we will ask you to come into the cancer centre to complete a package of questionnaires on the computer (or on paper), which will take about 30-45 minutes. Then we will measure your blood pressure and heart rate for about 20 minutes, and conduct a few simple tests of your flexibility, balance and strength. Finally you will visit the lab either that day or over the next week, and have three small (10mL) tubes of blood drawn for later analysis.
  • Before your classes start, you will also collect saliva (spit) samples in little tubes at home, four times a day over three days.
  • Your classes will either begin shortly after that, or you will wait 3-4 months for the next class. If you are waiting, you will fill out the questionnaires and do the other tests one more time before your classes begin.
  • When your classes begin, they will occur once weekly for 9-11 weeks (depending on your group). Classes will be held at the Holy Cross Site of Cancer Control Alberta.
  • After completing your classes, you will once again complete the same questionnaires either online at home, or on paper, and visit the hospital again for the 20 minute blood pressure test, balance, strength and flexibility tests, and to provide another 2 tubes of blood.
  • 6 months later, you will once again complete the questionnaires, blood pressure test, balance, flexibility and strength tests and provide 2 tubes of blood at the lab.

To learn more or sign up for the study, please visit The MATCH Study website.


Your support helped bring a new children’s cancer drug to clinical trial

The drug is called Carfilzomib and clinical health researchers at 10 major pediatric hospitals across North America are now evaluating it in a phase I clinical trial for difficult-to-treat children’s cancers.

Open to all eligible children with relapsed leukemia and solid tumours, the study will closely monitor and analyze the side effects of Carfilzomib to determine the maximum dose children can safely tolerate. The trial will cost approximately $3.5 million (U.S.) to administer.

Dr. Aru Narendran of the Alberta Children’s Hospital and University of Calgary and Dr. Jessica Boklan of Phoenix Children’s Hospital are the principal investigators in a new phase I clinical trial, studying the side effects of a drug called Carfizomib on children with high-risk cancers. Dr. Tony Truong, co-principal investigator at the Alberta Children’s Hospital, along with U of C clinical research staff, Karen Mazil and Pina Giuliano, are helping to monitor side effects and analyze findings from the study.

Previously tested and approved for use in adult patients, Carfilzomib has shown promise for treating adults with multiple myeloma—a high-risk leukemia. Studies in a University of Calgary lab revealed that the drug also acts on pediatric cancer cells. These findings from Dr. Aru Narendran’s lab were presented last year at a meeting of the American Association of Cancer Research.

Carfilzomib was originally synthesized from a natural substance made by a soil bacterium to protect itself. Scientists in Dr. Craig Crews’ lab at Yale University serendipitously discovered in 1998 that Carfilzomib also has strong anti-cancer properties. Their discovery led to clinical drug trials and FDA approval in 2012 for use in adults with multiple myeloma—a high-risk leukemia.

Carfilzomib’s anti-cancer properties lies in its ability to inhibit a mechanism called the proteasome, which cancer cells use for survival. Because cancer cells divide and multiply so quickly and recklessly, they make a lot of mistakes, leading to abnormally formed proteins within the cancer cells. These poorly formed molecules put stress on the cancer and threaten its survival. To get around this, the cancer cells increase their use of a mechanism called the proteasome to repair their mistakes. But by inhibiting proteasomes, Carfilzomib prevents the cancer cell from repairing itself and ultimately helps it to die of its own imperfections.

“The beauty of this drug is it goes after a mechanism used by all cancer cells, so it can be used against different cancers,” says Dr. Narendran a pediatric cancer researcher with the Experimental and Applied Therapeutics (ExpAT) program at the Alberta Children’s Hospital and the University of Calgary. “Normal cells don’t make so many mistakes, so this drug will be less toxic to normal cells, which may mean fewer side effects for children.”

Another promising attribute of Carfilzomib is that it works synergistically with other chemotherapies to boost their ability to kill cancer cells. This is especially important for chemo-resistant cancers.

“It’s kind of a safety net,” says Dr. Narendran. “Because the chemo agents and their toxicity are already known to us, we can use these chemotherapies with Carfilzomib to boost their potency for better outcomes.”

Although Carfilzomib looks promising, Dr. Narendran stresses that “What we know so far comes only from adult patients or from laboratory studies against pediatric cancer cells. We do not know if it will actually offer any benefit to pediatric cancer patients yet.”

As a phase I clinical trial, the study is not intended to cure children, but to understand its toxicities and determine suitable doses for treating children in the future.

Still, it is the first important step in a long quest to find safe and effective treatments for children with incurable cancers.

If it lives up to its potential, Carfilzomib may one day offer hope for children with incurable cancers.

If you are interested in this study for your child, please speak with your child’s oncologist to determine eligibility.