Infographics

These infographics were developed in collaboration with the patients and families participating in the INSIGHT study to assist in answering the most common questions asked in the clinic.  Translations of some of our resources are available in English, French, Spanish, German, Tamil, Mandarin, Bengali and Portuguese.

Nephrotic syndrome infographics

Medication infographics

Educational videos

These videos were created to help patients and families learn more about our studies.

 

The kidneys are paired organs in the body.

 

They normally filter waste and excess water from the blood. The filer acts like a colander holding some important proteins in and letting water and other particles through.

Cells that normally put up a protective barrier in the filers of the kidney aren’t functioning and become leaky.

 

This leads to important proteins  spilling into the urine.

 

When this happens, urine becomes frothy, the body swelling, and if left untreated, children are at risk of severe infection, blood clots and kidney failure.

 

This condition is known as Nephrotic Syndrome and is a common kidney disorder in children

 

to treat nephrotic kidney syndrome, children must take medications exactly as prescribed.  Steroids are the most effective treatment for Nephrotic syndrome.  It may take several weeks for the protein to go away.

 

if your child is having difficulty taking their medication, contact our healthcare team for advice.

 

Home monitoring for nephrotic syndrome is very important.

 

measuring urine dipsticks regularly may detect a relapse.  it is important to take proper precautions when caring for a child with nephrotic syndrome.

Keep a calendar, diary, or urine test results and medication dose. Collect a small amount of urine in a cup or special bowl that fits over the toilet. Check urine regularly using urine dispensers.

 

The first urine of the day is the most accurate urine to check.   Take a dipstick out of the bottle makes sure to replace the bottle cap right away to preserve the dipsticks.  Dip the end of the dipstick that has the testing pad into the urine until it gets completely wet and then remove.

 

Never urinate directly onto the dipstick or dip it into the toilet.

 

wait one full minute , compare the color of the square to the colors on he bottle to get the closest color match possible.

 

write down the corresponding number on the calendar or diary.

 

patients must also maintain a special diet.

  1. reduce stake intake. remove the salt shaker from the table. do not add salt to food when cooking. read food labels to determine amount of salt
  2. eat plenty of fruits and vegetables
  3. take calcium and vitamin D while on prednisone if recommended by your doctor.  This is important to maintain healthy bones.

and it is important to monitor for ongoing symptoms

 

check urine more often if experiencing a cold or flu

watch for signs of eye swelling or puffiness

call the healthcare team if a fever occurs

 

your healthcare team is here to help you!  contact them with any questions or concerns you may have.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The cells that normally put up a protective barrier aren’t functioning, which leads to important proteins being spilled into the urine.

[The kidney illustration turns dark red. A dark red outline emits from the kidneys. The yellow arrow becomes bigger and turns into a dark brown colour.][On-screen text: Urine becomes frothy.]

When this happens, urine becomes frothy and the body swells. In rare cases, the kidneys fail. This condition is known as nephrotic syndrome and is the most common kidney disorder in children.

[The screen zooms out to the illustration of the child lying in the hospital bed. The zoomed-out kidney illustration turns black.][On-screen text: Nephrotic syndrome]

In Ontario, 5 children per hundred thousand are diagnosed with nephrotic syndrome each year.

[The screen zooms out, showing five children lying in hospital beds.][On-screen text: 5 children per 100,000.][An illustration of a group of health-care professionals and scientists appears on the left side of the screen. A speech bubble with a question mark appears above the illustration.]

Scientists do not yet know what causes this disorder. The INSIGHT research team aims to understand the genetic, environmental, and socio-economic factors leading to nephrotic syndrome.

[The screen zooms into the health-care professionals and scientists. The INSIGHT logo appears above them and pans to the left. Thought bubbles with icons depicting DNA, the Earth and a group of people appear alongside icons of kidneys.]

To do this, we collect blood, urine, and health information from children with nephrotic syndrome.

[The screen zooms out and the health-care professionals appear by the bedside of each of the five children lying in hospital beds. Icons of blood in a test tube, urine in a container and an icon with a lowercase ‘I’ in a speech bubble appear on the screen.]

Understanding what causes this disorder can help improve diagnosis, treatment, and outcomes.

[The INSIGHT logo appears on the screen. The text reads, “If you are interested in participating, contact insight.study@sickkids.ca or visit us online…”]

INSIGHT website

Twitter: @toronto_insight

[Illustrations of five children lying in hospital beds appear on the screen. A simple illustration of a pair of kidneys appears on the screen, with dashed lines connecting the illustration to each child.]

INSIGHT aims to understand what factors account for why some children with nephrotic syndrome have one relapse while others have many.

[On-screen text reads, “Nephrotic syndrome”. Circles with number of relapses appear above each child.]

We found that there is an association between ethnicity where a family originates in the world and the number of relapses children have.

[The kidney illustration and number of relapses fade from the screen and is replaced with an animation of the Earth that rotates.]

We found that in Toronto, South Asian children are six times more likely to have nephrotic syndrome than European children. South Asian, East Asian and Southeast Asian children had fewer relapses than European children and a longer time between relapses by 50 days.

[The animation of the Earth and three of the children lying in hospital beds fade to focus on two children. A speech bubble containing an illustration of the globe with South Asia highlighted in green appears above the child on the right. Another speech bubble appears above the child on the right and reads, “Six times more likely to have nephrotic syndrome”.

A speech bubble containing an illustration of the globe with Europe highlighted in green appears above the child on the left.

Two children lying in hospital beds appear to the right of the child from South Asia. Speech bubbles containing icons of globes highlighting East Asia and Southeast Asia, respectively, appear above the two children. A dark red box highlights the speech bubbles for South Asia, East Asia and Southeast Asia.]

South Asian, East Asian and Southeast Asian children also respond better to treatment with steroids than European children.

[Speech bubbles containing icons of a pair of kidneys (text reads: fewer relapses), a double headed arrow between two circles (text reads: longer time between relapses) and a syringe (text reads: respond better to treatment) appear on the screen below the dark red box.]

Understanding differences by ethnicity may point to underlying biological and environmental differences leading to nephrotic syndrome.

[The speech bubbles pan off the screen. The animation of the Earth returns on screen.][The INSIGHT logo appears on the screen. The text reads, “If you are interested in participating, contact insight.study@sickkids.ca or visit us online…”]

INSIGHT website

Twitter: @toronto_insight

[An illustration of five children lying in hospital beds appear on the screen. Illustrations of each child’s parents appear.]

At INSIGHT, we found that a parent’s health literacy might influence the number of nephrotic syndrome relapses their child has.

[The screen transitions to a split screen zooming into two children and their parents. On the left side, there is a speech bubble that reads, “Higher health literacy” and on the right side, “Average health literacy”. A speech bubble that reads, “Relapses: ???” appear above each child.]

Health literacy involves understanding written and spoken health information and the ability to advocate for oneself in the health care system.

[The illustrations of the two children in hospital beds disappear from the screen, leaving the parents remaining on-screen. Speech bubbles depicting a person reading and asking questions appear above the parents. Additional speech bubbles depicting health-care professionals and another person asking questions appear.]

In this study we assessed two components of health literacy reading comprehension and numeracy skills.

[The screen returns to the split screen view. On-screen labels read, “Reading comprehension” and “Numeracy skills”.]

We found that children of parents with higher reading comprehension had half the number of relapses in a longer initial relapse free period after diagnosis.

[On the left side, a speech bubble that reads “Higher health literacy” appears above the parents, and a speech bubble with a kidney icon appears above the child. On the right side, a speech bubble that reads “Average health literacy” appears above the parents, and a speech bubble with two kidney icons appears above the child.][The kidney icons in the speech bubbles above each of the two children are replaced with icons of calendars. On the left, more days on the calendar are highlighted than on the right.]

Children of parents with the highest reading comprehension were five times more likely to have complete remission after treatment.

[Illustrations of the two children standing upright appear on the screen. The label on the left side reads, “Higher reading comprehension” while the right side reads, “Average reading comprehension”. Speech bubbles with stacked rectangles and a label that reads, “chance of remission” appear above each child. On the left, there is one rectangle. On the right, there are five stacked rectangles.]

Interestingly those with post-secondary education level or higher did not necessarily have higher health literacy.

[Illustrations of each child’s parents appear on the screen beside their child. A text box above the parents on the left reads, “No secondary education”. The parents on the right are wearing grad caps.]

Education alone is not the best indicator of health literacy. A more comprehensive approach could help identify families that could benefit from additional teaching and monitoring.

[The screen zooms out from the split screen view. Health-care professionals appear standing beside the two families.] [The INSIGHT logo appears on the screen. The text reads, “If you are interested in participating, contact insight.study@sickkids.ca or visit us online…”]

INSIGHT website

Twitter: @toronto_insight

[Illustrations of five children lying in hospital beds appear on the screen. Illustrations of each child’s parents appear on screen shortly after.]

INSIGHT aims to understand what factors contribute to parent’s preferences about having their child undergo genetic testing.

[On-screen text: Genetic testing][The screen zooms into one of the children at a microscopic level. The screen shows circles containing an illustration of DNA in each.]

Genes are the building blocks inside ourselves that make us uniquely who we are. They determine the color of our eyes and hair and our risk of getting certain diseases.

[The screen zooms into a strand of DNA. Icons depicting an eye, hair and an illustration of a body with red pain spots appear with lines connecting the icons to specific places on the DNA strand.]

Genetic testing can reveal abnormal changes in a child’s genetic makeup that contribute to the nephrotic syndrome.

[The eye, hair and body icons disappear from the screen. An illustration of a pair of kidneys appears, with lines connecting the icon to specific places on the DNA strand. A speech bubble appears above the kidney icon that reads, “Nephrotic syndrome”. The kidneys turn dark red.]

We found that in the patients and families we studied, South Asian, East Asian and Southeast Asian parents were 75 percent less likely to agree to have their child undergo genetic testing than European parents.

[The screen zooms out to show the five children and their parents. Three coloured bars that are one-quarter filled and labelled “South Asian”, “East Asian” and “Southeast Asian” appear on screen. A fourth bar appears from the left that is completely coloured in and labelled “European”. A speech bubble appears over this bar that reads, “75% more likely”.][Text above the bars read, “Agree to Genetic Testing”. Four coloured circles corresponding to each of the four bars appear at the top of the screen, with the text “tailor genetic counselling” below the circles.]

Understanding ethnic differences in attitudes toward genetic testing can allow us to properly tailor genetic counseling to suit each parent’s needs.

[The INSIGHT logo appears on the screen. The text reads, “If you are interested in participating, contact insight.study@sickkids.ca or visit us online…”]

INSIGHT website

Twitter: @toronto_insight

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