Background
 
Medical procedures in children are common, and can cause anxiety, pain and distress in children and in their parents or carers. Pharmacological (i.e. medication) and non-pharmacological (i.e. distraction) approaches are often used to minimise procedural pain and anxiety. Although effective, ​pharmacological approaches often cause negative side-effects. On the other hand, non-pharmacological are effective approaches which can include therapy play to promote education and coping, or distracting children from their pain or anxiety associated with medical procedures.

Screen-based technologies are increasingly common non-pharmacological resources being used to improve procedural pain and anxiety in paediatric care. They can involve passively watching a video or actively playing a computer game (i.e., interactive video games).

Though research has shown that screen-based technologies can reduce procedural pain and anxiety, we still do not know much about the effectiveness of screen-based technologies depending on the extent to which the user engages with such technologies. We might expect that active engagement with technology may result in lowered pain perception due to greater immersion with the technology. It is also unclear if interventions that educate patients about their upcoming procedure (i.e., preparatory interventions) are more effective than interventions that simply aim to reduce pain and anxiety through distraction alone. We therefore reviewed the available literature covering a 20-year period to understand the strength and nature of existing evidence.

Findings

We systematically identified, located
and accessed experimental studies that examined the effect of video games interventions on procedural pain and anxiety among children (aged 0–18
years). Through our systematic search
of the literature, we identified 36
relevant studies representing 3406
​young patients. The evidence suggests that children who used interactive video games reported less pain and anxiety compared to children who used other types of interventions (e.g. clown therapy). The studies also showed that playing interactive video games were more effective at reducing children’s procedural anxiety compared to passive games. The evidence also showed that carers of children who played interactive video games reported lower anxiety than carers of children who used other interventions.
​
Our review supports the use of interactive video games to reduce procedural pain and anxiety in children, and their carers. Although we did not observe any substantial benefits of preparatory video games over distraction-based ones. It remains unclear though about the best timing and setting to implement interactive video games to achieve the maximum benefit on patient outcomes, for example if repeated exposure may further reduce pain and anxiety in children undergoing medical procedures.
 
This article was published in the British Journal of Anaesthesia. The full paper can be found here.   
 
This post was written by Dr Christina Signorelli and Mr Sylvester Okeke.
​

This article was published in the Australian Journal of General Practice. The full paper can be found here.  
 
Cancer diagnosis is usually associated with concerns and anxieties around survival, as well as the psychosocial and economic costs of managing a chronic disease. Although this apprehension is similar across different age groups diagnosed with cancer, the experience of children and adolescents may be significantly different from the experience of adults and the elderly. The cancer experience can interfere with education and development and may constitute a major stressor to the patient as well as parents, siblings and extended families.  
 
Given that around a third of child and adolescent cancer survivors report high levels of anxiety, it is important that psychosocial care aimed at mitigating the impact of these stressful events accompanies treatment and survivorship care. This need for support extends beyond diagnosis and treatment to the long-term survivorship period, which is often focused on the management of cancer late effects. This paper curates the latest in clinical research in regards to the role of the general practitioner (GP) in providing care during and after cancer treatment. The impact of the GP, on facilitating and supporting ongoing wholistic care, is presented as a personal case study, shared by a long-term survivor of childhood cancer and his own experiences with primary care.  
 
Child and adolescents’ experiences by stage 

Diagnosis 
Lived experiences: Following a diagnosis, feelings are largely characterised by shock, fear, anger and anxiety. Coping mechanisms of denial and avoidance may also be experienced. There may also be a feeling of social isolation and concerns with body image.  
The role of the GP: At the point of diagnosis the GP may help the family to process medical information and answer questions. The GP may be mindful of the needs of other family members and ensure acute or chronic illnesses continue to be addressed amid the chaos that sometimes accompanies a new cancer diagnosis.  
 
Treatment 
Lived experiences: At this stage there may be distress associated with accepting the reality of a cancer diagnosis. During treatment children and adolescents experience both physical (pain, fatigue) and emotional (grief, anger, and fear for the future) challenges. 
The role of GP: The GP can support both the patient and their family and ensure that they understand treatment options and are engaged with all treatment protocols. This can be attained through regular communication with the patient and their family. 
 
Survivorship 
Lived experiences: Though survivors may experience joy as they celebrate survival and the completion of intense treatment regimens, they may also experience feelings of uncertainty, fear of recurrence, post traumatic stress disorder, financial toxicity, and stressors due to the ongoing need to manage multiple co-morbidities. 
The role of the GP: The GP may assume an active surveillance role for long-term effects and make timely specialists referrals. The GP has a valuable role in continuously promoting positive health behaviours and providing psychosocial support or referral for the family if needed.  
 
Bereavement 
Lived experiences: The loss of a family member is characterised by grief and changes to family dynamics (e.g., parent-child and marital dyads).  
The role of the GP: As a clinician who knew the patient and family, their ongoing care of remaining family members is important. Encouraging ongoing self-care and health behaviours, as well as support navigating psychosocial care pathways is important.  
 
Case study 
The experiences of a long-term childhood cancer survivor, seeking support for the treatment of late effects, was featured in this article.  
 
“… At age 20, I had a fertility test…It came back negative, azoospermia...Of course, the GP couldn’t change anything, but it would have been a great time to point me towards some help or support. I should have done it myself, but I was traumatised…I was referred to a specialist who treated me like everyone else, ignored my history and put me through several years of torture…I felt weak, humiliated and suicidal. Finally, when I re-engaged with the multidisciplinary team at the childhood cancer long-term follow-up clinic, I met a new endocrinologist who changed my life completely – instantly” (A survivor’s voice). 
 
Funding
The Behavioural Sciences Unit (BSU) is proudly supported by the Kids with Cancer Foundation. JM is supported by the Medical Research Future Fund, Australian Brain Cancer Mission, Brain Cancer Survivorship Grant (MRFBC000002). CEW is supported by a Career Development Fellowship from the National Health and Medical Research Council of Australia (APP1143767). CS is supported by a CINSW Early Career Fellowship (2020/ECF1144). This work has been supported by a Medical Research Future Fund (MRFF) Brain Cancer Survivorship grant (MRFBC000002). 

Brittany McGill, clinical psychologist and PhD candidate at the Behavioural Sciences Unit, recently wrote an article for ABC news on the heavy burden of decision making for young families during the COVID-19 pandemic. ​In this article, Brittany explored evidence-based psychological coping strategies to help parents manage anxiety about decision-making in situations with high levels of uncertainty, such as a global pandemic. These ideas included:
i. Shift focus to what you can control;
ii. Acknowledge that there may be no ‘right’ answer, but only what is best for your family; and
iii. Practise self-compassion and kindness to others.

Background

Between 10% and 30% of school age children live with a chronic illness that has the potential to impact their participation in school. For some, chronic illness results in occasional days absent, for others, there are recurrent medical appointments and bouts of poor health requiring time away from school. Quantifying the impact of chronic illness on a child’s education and academic outcomes has been challenging. Using linked data from over 300 000 children attending NSW schools, we have examined the impact of hospitalisation for a chronic condition on NAPLAN (Australia’s standardised school assessment) completion and performance.

Findings

Our new analysis shows children with a chronic illness are more likely to miss sitting the NAPLAN, and when they do complete the NAPLAN assessment, they are more likely to perform below national minimum standards.  Children hospitalised with chronic condition even only once had 25-37% increased odds of performing below national minimum standards in reading and 36%–42% increased odds of performing below national minimum standards in numeracy. Children hospitalised for mental health/behavioural conditions, cardiovascular or neurological conditions appeared to be at particular risk of performing below standards on NAPLAN assessment.

What does this mean?

Children with chronic illness are at risk of underperforming in standardised academic assessment, and are also likely to miss assessment. Current policies and support only go part way to addressing the needs of students with chronic illness. Integrated interventions that incorporate health, education, and psychological support, specifically for students with chronic illness is desperately needed to stop these vulnerable children falling through gaps between hospital and school.

Co-authored by Dr Joanna Fardell (@jefardell) and Dr Nan Hu (@hnnathanhu)

​To read the full paper click here

Background

When children or teenagers are diagnosed with cancer, they may experience challenges like social isolation while stuck at home or in hospital, feeling “different” because of physical appearance changes like hair loss, or being excluded from social activities. Two previous research studies from more than 15 years ago also showed that young people with a history of cancer may also experience serious symptoms of social anxiety, which is usually described as the significant fear of certain social situations, in which young people experience distressing worry about how others perceive them. For someone experiencing serious social anxiety, meeting new people, attending a busy social event, or presenting in class can be really difficult things to do. Yet, these are all behaviours that are key to young people having active, normal and meaningful social lives, and thriving as they mature into adulthood.  

Around 5-13% of young people in the general population (without a history of cancer) experience such serious levels of social anxiety symptoms that they have been diagnosed with Social Anxiety Disorder. This is a mental health disorder where fear of meeting new people or participating in certain social activities is so severe that young people become very distressed and often decide to avoid certain kinds of social activities all together. Individuals with Social Anxiety Disorder need treatment from a clinical psychologist. No recent studies have tried to understand how common serious symptoms of social anxiety may be among young people with a history of cancer. We also do not know from previous studies what impact social anxiety symptoms might have on the daily life of young people with a history of cancer.  

We conducted a research study to understand: 

1. The proportion of Australian survivors of childhood and adolescent cancer who experience serious symptoms of social anxiety (suggesting they might have Social Anxiety Disorder) 

1. How survivors describe the impact of these symptoms on their daily life 

​Findings

We asked 57 survivors of childhood or adolescent cancer who were currently between the ages of 13-25 to participate. We invited them to complete one survey and one interview. Surveys were completed by 27/57 survivors, who were between 1-16 years old at their time of diagnosis.  

We found that 9/27 survivors (33%) experienced ‘clinically significant’ symptoms of social anxiety. This means the symptoms were so serious that they negatively affected young people’s functioning in daily life and signaled that young people might have Social Anxiety Disorder. In interviews, these survivors described how social anxiety caused them to have thoughts of worry and fear during social interactions, which led to behaviours like avoidance. ​

What’s next? 

We need to make sure that we pick up and treat social anxiety symptoms among young people with a history of cancer. When these symptoms are left untreated, they can last for 10 years or more, or get worse over time. Social anxiety symptoms are also linked to other social and emotional concerns, like depression, other forms of anxiety, and education or workplace challenges. Our findings suggest young people diagnosed with cancer may be at risk of serious social anxiety symptoms, so it is important for researchers and clinicians to work together to find ways to better assess and address these symptoms.  ​

To do this well, there are many questions that still need answering. We do not know if tools used to assess social anxiety symptoms in young people without a history of cancer give us a good picture of these symptoms and the unique ways they might occur among young people with a history of cancer. We also do not know when social anxiety symptoms may begin after a cancer diagnosis, or if there are certain factors that might predict which young people with cancer may develop more serious social anxiety symptoms over time. Our team is working on studies to answer these questions. We hope this will help us to better protect and promote positive mental health and healthy social functioning among young people diagnosed with cancer. 

This paper was published in the Journal of Adolescent and Young Adult Oncology. 
You can read the full paper here.

Background

Supporting a child through illness or injury that is serious enough to require hospitalisation may be the most distressing challenge a parent will ever face. Families with hospitalised children experience emotional,  social, practical and financial stress during their child’s hospitalisation. Aiming to ameliorate some of these stressors, Starlight Children’s Foundation’s Starlight Express Rooms have become an integral part of children’s hospitals across Australia. Starlight Express Rooms offer families a non-clinical, fun, and vibrant environment in which to find respite from clinical wards and to receive emotional, social and practical support. Despite a multitude of anecdotal reports that Starlight Express Rooms are appreciated by families, the Starlight Children’s Foundation identified that more research was needed to fully document the value and significance of the Starlight Express Rooms.
Results from this research can inform the on-going investment in these rooms in Australia, as well as other playrooms/recreation rooms in children’s hospitals around the world.
 
Participant information
​

• Parents of hospitalised children were eligible to participate if their child had used the Starlight Express Room in the previous 12 months.
• 123 parents completed questionnaires
  • 60 had accessed the room in Sydney Children’s Hospital, and 63 had accessed the room in Monash Children’s Hospital.
• 13 parents completed an interview

 
Findings
​
1. What are parents’ positive and negative associations with the Starlight Express Rooms?
Parents overwhelmingly reported positive associations with the Starlight Express Rooms and were far less likely to report negative associations with the Starlight Express Rooms (Figure 1). 

2. How does use of Starlight Express Rooms relate to parent and child wellbeing?
Parents who reported ‘clinically relevant stress’ used the Starlight Express Rooms more times than parents who did not report ‘clinically relevant’ stress.
Parents who reported lower child physical functioning used the room more than those who reported higher child physical functioning
3. What are parents’ most and least valued aspects of the Starlight Express Rooms?
Most valued: Parents reported that the Starlight Express Rooms gave them respite from the hospital and medical realities, while also providing their children with much needed fun and laughter. Parents also reported the importance of social support from the Captain Starlights, volunteers, and other parents using the room.
Least valued: Parents reported that the rooms were not particularly accessible for infants and very young children. Parents also wanted more access to the Starlight Express Rooms and the Captain Starlights and suggested extending opening hours of the Rooms.
 
Summary
​
Overall our findings demonstrate the overwhelmingly postive benefit of Starlight Express Rooms for hospitalised children and their families. The respite and social support provided within the Starlight Express Rooms may be particularly important for highly distressed parents and families of children with lower psychosocial functioning. It appears as though the room being a medical-free zone, the mythology of the Captain Starlights, and the emphasis on joy and fun in the room, culminate to offer a sense of escapism within the hospital, resulting in families experiencing respite and support. Nevertheless, limits to the accessibility of the recreation rooms may hinder them from providing support to families of very young children and infants, and to families of children who are critically unwell (e.g. admitted to the ICU). 

This paper was published in the Journal of Pediatric Nursing. You can read the full paper here.

Background

We know from existing research that a cancer diagnosis during adolescence or young adulthood can disrupt young people’s social development. Young people diagnosed with cancer may be less likely to graduate from higher education, or to stay employed, compared to healthy peers. Survivors may also miss school or work because of the impacts of cancer treatment. Or, they may struggle to keep up once they do return. While physical health problems, like fatigue, can be challenging, it can also be hard for young people to catch up on missed social life. Young people may find themselves socially isolated because of hospital appointments or not feeling well. Spending time away from friends, classmates or work colleagues can also lead to challenges keeping up with or enjoying social activities such as dating or activities with friends.
 
It is important to find a way to better evaluate young people’s social functioning concerns during and after cancer treatment. To do this, we wanted to first understand what social functioning means for these young people. How has it been defined in existing research? Second, we wanted to understand what tools have been used most often to evaluate social functioning in young people with cancer. Are these tools also evaluating what matters to these young people? And lastly, we wanted to identify what factors might affect young people’s social functioning during and after cancer treatment. Are there factors that researchers and clinicians could use to develop support services that prevent poor social functioning or promote good social functioning?
 
Our Review

We reviewed 37 studies on social functioning among adolescents and young adults with cancer. We have recently published our findings in the journal Psycho-Oncology.
We found that 3 definitions were used to describe social functioning among adolescents and young adults with cancer:

1. Social functioning as a domain of health-related quality of life: focused on limitations and difficulties with participation in social activities (19/37 studies)
2. Social well-being: focused on one or areas in which cancer may affect young people’s social lives, such as education, employment, financial burden, interpersonal relationships and supportive care (16/37 studies)
3. Social adjustment: focused on social skills, social behavior, peer acceptance and quality of friendships (2/37 studies)

We also found that, despite differences in definitions, most studies used health-related quality of life tools to measure young people’s social functioning. These tools focused mostly on identifying limitations and difficulties young people experienced with participation in social activities. However, qualitative studies, such as those that interviewed young people with cancer, showed us that social functioning meant a lot of different things to young people: functioning in school or work, functioning in friendships, functioning in romantic relationships, functioning financially, and more. These real-world aspects of AYAs’ social lives are not always measured by health-related quality of life tools. This means that research needs to do better at capturing all these different areas that mattered to young people.
Another important finding was how many different factors contribute to social functioning for young people with cancer.  Negative body image, feeling different from peers/comparing oneself to peers, cultural/social stigma around cancer, depression, and fatigue are key contributors to poor social functioning among young people with cancer. On the other hand, having access to adequate social support from family and friends, as well as age-appropriate and high-quality healthcare that addresses young people’s fertility and sexual/intimate relationship concerns can help to protect and promote good social functioning for these young people.

For more information or to read the full paper online, please click here. 

Get active with activity trackers!

Wearable activity trackers have been growing in popularity over the past few years. A benefit of using a wearable activity tracker is the ease of monitoring how much physical activity you’ve done for the day, simply on your wrist or smart phone. There are a wide variety of trackers available with several features which not only track your step counts, but also calories, distance walked, time spent in moderate to vigorous physical activity, and/or sleep.

​It’s very common that people often overestimate the physical activity they are doing. Using a wearable activity tracker could be a great motivational tool (that does not lie to you) and might even empower you to engage in more physical activity.

The use of wearable activity trackers to monitor physical activity levels and to motivate children and adolescents is growing in the field of paediatric oncology.

Why are activity trackers relevant for paediatric cancer survivors?
Many children and adolescents on cancer treatment, or who have finished cancer treatment, do not participate in adequate physical activity levels. Physical activity is essential for young people as it helps to improve fitness, muscle strength and, most importantly, helps to reduce the risk of chronic illnesses such as cardiovascular disease. Childhood survivors are at risk of developing treatment-related chronic illnesses, including cardiovascular disease, obesity and secondary cancers, so encouraging them to be active is particularly important.

Do wearable fitness trackers encourage people to be active, or are they just more convenient to track (rather than writing things down, etc.)?
Activity trackers that provide feedback to the user (i.e., step counts or time spent in (MVPA)) have the potential to motivate and engage people to increase their physical activity levels; however, further research is needed to understand how activity trackers can be effective at improving physical activity levels when incorporated into different interventions.

How can oncology nurses use this data to discuss the potential benefit of wearable trackers with their patients?
Oncology nurses can discuss with patients the importance of physical activity and the potential benefits of using an activity tracker to monitor how much physical activity they are achieving. They are widely available and can provide a breadth of information including intensities of physical activity, duration of physical activity, energy expenditure, sleep and time spent in sedentary behaviours.

Little Big Steps
I recently found out about Little Big Steps, a charity championing physical activity for paediatric cancer patients. The charity was founded by two mums, Cass and Cindy, and the whole idea for Little Big Steps arose when Cass gave her son Lochie a fitness watch for his 8th birthday. Lochie who had been spending increasingly more time in bed due to the nature of his gruelling treatments, was on his feet getting his steps count up, seeking out physical activity just to see the progress on his new watch. Not only did his mood improve, but he was coping better with his treatments as well, all thanks to those small steps he was taking every day.

Three years on and Lochie is now in remission, and Little Big Steps is going strong - funding research into the benefits of physical activity during cancer treatment for kids, and providing Fitbits to kids across Australia who are battling with cancer.

If you would like to support Little Big Steps and help get kids with cancer moving, head on over to the website and make a donation today. You can also follow Little Big Steps on Facebook or Instagram

https://www.instagram.com/littlebigstepsaustralia/
https://www.facebook.com/LittleBigStepsAustralia/

To read the full interview with our exercise physiologist and PhD student, Lauren Ha, click on this link: Wearable Fitness Trackers May Improve Health in Childhood Cancer Survivors (oncnursingnews.com)

For adolescents and young adults, going through cancer treatment can be really tough. Sometimes it’s unclear how things are going to turn out. There may be difficult conversations that young people want to have with family, friends, and their healthcare team that they might not have the words for.

​When there is so much uncertainty related to the future, being able to put words to their concerns can help young people feel more in control and have more of a say in their care and treatment.
​
Voicing my CHOiCESTM
Voicing my CHOiCES™ is an advance care planning tool for young people, developed by a team in the United States to give young people a way to express the things that are important to them - their thoughts about how they want to be comforted, supported, treated, and remembered.

Advance care planning is a series of steps that a patient, their family and healthcare professionals can take to make sure that the patient’s values, choices and decisions can be communicated in the future, if they were no longer able to do so themselves. For adolescents and young adults these steps are often recorded in a booklet, such as Voicing my CHOiCES™. Helping young people to express their preferences is really important for allowing them to achieve good quality of life and to live their lives to the fullest.
​
What this study aims to achieve
We have recently developed an advance care planning tool specifically for Australian young people for when it is not certain that their cancer can be cured. Our team evaluated the American Voicing my CHOiCES™ tool with Australian young people, their families and healthcare professionals. The next step is to evaluate this new Australian version of the Voicing my CHOiCES™ tool. Having an Australian advanced care planning tool will ensure young people’s voices are heard if their treatment does not go to plan or takes an unexpected turn.

​Together with our consumers and stakeholders, our team has adapted the language, content and structure of the tool to better suit Australian adolescents and young adults living with cancer. This has been an important step: not only to make the tool more relevant to our Australian healthcare system, but also to make the tool ‘speak’ in language that makes sense to Australian adolescents and young adults.
We’ve had help from the Australian Medical Association Queensland to update the tool’s look and graphic design to better suit Australian young people’s preferences and needs.  The result is a tool with a more Australian flavour, and a look that our consumers felt was more inviting and engaging for them. Using tools like this can help us to help patients, families, and health-professionals alike navigate the murky waters of, “What next?”

If you’d like to read more about this study you can check out Ursula’s blog post on Oncology News - https://oncologynews.com.au/talking-about-dying-is-never-easy/
 
You can also read more from the team on the communication needs of young people with cancer here - https://www.liebertpub.com/doi/full/10.1089/jayao.2019.0084
 
If you’d like to be involved or find out more about evaluating the new Australian Voicing my CHOiCES™, get in contact with our Chief Investigator Ursula via the details below, or leave us a message on the website (https://www.behaviouralsciencesunit.org/difficult-discussions.html)
 
Ursula Sansom-Daly
Email: ursula@unsw.edu.au
Phone: (+612) 9382 3114 

Chronic Kidney Disease (CKD) is a severe, multi-organ condition that can dramatically interfere with patients’ quality of life. Children and adolescents are at increased risk of premature death and commonly experience a range of co-existing illnesses, including cardiovascular disease, mineral and bone disorders, intellectual impairment and impaired growth. The genetic underpinnings of CKD are increasingly being realized. As a result, genetic testing has become integrated as a component of standard care for children and families, to inform more accurate diagnoses and to guide more effective therapies.
 
Although the genetic diagnosis can be important for clinical care, the impact of genetic testing on children and families is not well understood. To address this, our team set out to investigate the experiences of families 26 Australian families who received genetic testing for their child’s kidney disease. We carried out in-depth interviews with parents to understand the psychosocial impacts of genetic kidney disease and to identify their information and support needs.
 
 
Parents’ Experiences of Genetic Testing
Our findings demonstrated that genetic testing can be an “emotional rollercoaster” for families. Parents were motivated to have genetic testing for their child in the hope that the test results would enhance their child’s clinical care and improve outcomes for their child. It was particularly important for parents to feel supported by their child’s treating clinical team when undergoing testing to ease levels of anxiety awaiting the test outcome. Regular communication between families and their child’s treating team, with clear and compassionately delivered information increased parents’ levels of trust and helped them to feel reassured.
 
The Psychosocial Impact of a Genetic Test Result
Parents expressed positive attitudes towards the genetic diagnosis when it improved their understanding of their condition and provided them with insight into possible outcomes. Emotional benefits associated with receiving the genetic diagnosis included providing a sense of closure and opportunity to prepare for their child’s future emotionally and practically. Parents often reported that the genetic diagnosis empowered them with information to optimally manage their child’s kidney disease and to explain their child’s condition. Many parents found that the genetic diagnosis helped them to connect with peer support groups. Importantly, getting connected with a shared community reduced social isolation and improved parents’ capacity to adapt to their child’s diagnosis.
 
However, timing was important for families and delayed diagnoses and genetic diagnoses that had less of an impact on their child’s clinical care were described to be discouraging. Often families expressed profound uncertainty for their child’s future and how the genetic diagnosis would progress. Our families told us that they would have benefited from having condition specific resources and improved communication tools to explain the range of timeframes it could take to receive a genetic diagnosis. Guidance on how to appropriately explain their child’s genetic CKD in an age-appropriate manner was frequently desired. Parents reflected that establishing peer support groups for adolescents living with CKD would be a valuable.
 
Preferences for Genetic Information.
Parents felt “overloaded” with emotions during clinical genetics appointments, which made it hard to absorb complex genetic information. Time to process the content delivered during genetics appointments was important and parents reported that accessible, take-home resources helped them to “digest” genetic information.
Parents were aware that genetic research was advancing, and this gave some parents increased hope for their child’s future. Being knowledgeable and keeping updated with research developments regarding regarding their child’s genetic diagnosis was considered important. An accessible, online platform with expert information specific to their child’s genetic condition was the preferred format for this information.
 
Considering the critical need for fast-pace information required by parents and families undergoing genetic testing. We hope that our findings will promote and inform the development of accurate and accessible resources that address the holistic needs of families and children with genetic kidney disease.
​
You can read more about this research here