What is childhood arthritis?

The CDC states that childhood arthritis “begins when the immune system becomes overactive, leading to joint and body swelling." The CDC also explains that "Childhood arthritis can cause pain, loss of motion, and permanent damage in the joints." As a result, simple activities like walking or playing with friends may become difficult.

Approximately 220,000 children under the age of 18 in the United States have arthritis, making it one of the most common chronic pediatric conditions. Although there is currently no cure, the CDC says that "there are ways to manage and treat it."

Moreover, successful management depends on continuous communication between healthcare providers and caregivers.

 

Why communication matters in childhood arthritis treatment

Childhood arthritis doesn’t follow a predictable course, so symptoms may improve for months before suddenly worsening. The CDC notes that "There may be times when symptoms get worse, known as 'flares.' There may also be times when symptoms get better, known as 'remission.'"

Since symptoms change over time, families often need guidance between office visits, especially when they have questions about medication side effects, specialist referrals, school accommodations, or new symptoms.

Some children with arthritis might not always be able to articulate their pain clearly, while others may minimize their symptoms because they worry about additional tests or treatments. According to research on parents’ experiences and perspectives of pain communication in paediatric rheumatology, many caregivers recognize subtle emotional or behavioural changes before their child acknowledges being in pain. For example, one parent explained, "A really good indicator of pain is that she flips from happy and really enjoying herself, to really grumpy, really fast."

Another parent described noticing physical signs their child didn't even realize they were displaying, "He'll fall to one side, or he'll wince, and he doesn't notice he's doing it. But because I'm watching what he's doing, I'll notice that…did that hurt you? And he'll go, oh, actually, yeah, it did."

The research also found that parents frequently supplement conversations because children forget important details or struggle to explain their symptoms. One caregiver said, "There are times when he's left out information that he's forgotten, and I'll just sort of give them information there."

HIPAA compliant email allows providers to continue these conversations between appointments. Parents can respond with reports on their child’s pain, stiffness, swelling, fatigue, or mobility as they happen. These updates can also give providers a better understanding of disease progression and may help identify worsening disease activity earlier.

"Even if they say you're not in pain, then you still acknowledge it…show them that you are trying to help with that in whatever way…that's the most important thing…that they just feel that you believe them and that you're trying to help,” as a caregiver mentioned in the study explains.

 

Supporting flare management

During doctors’ appointments, parents in the abovementioned study explain that clinic visits often just reflect how the child feels on that day. As evidenced by one parent, "It's hard because when (child) attends clinic, she only really talks about the pain she's experienced in the last couple of days before her appointment, whereas actually a month ago it might have been quite different."

HIPAA compliant email allows families to update providers throughout the course of a flare. For example, if a child using Aleve for pain management experiences increased discomfort or new symptoms, parents can quickly communicate this information to the healthcare team. Their provider can then respond with appropriate adjustments to the treatment plan, leading to better outcomes and improved quality of life for the child during times of increased pain or discomfort.

 

Building patient trust

According to the research study, the building blocks of effective pain communication were based on “Healthcare professionals building rapport, trust and familiarity with child.”

Furthermore, “Parents felt it was important for healthcare professionals to manoeuvre the clinical conversation around other topic areas such as general well-being, hobbies and interests so that conversations were not all pain focused and so that rapport and trust could be built.”

One parent explained, "She just knows when he's being a bit cheeky and stuff and just goes with it… He's just got that trust with her, and he knows that she's on his side and she's there to help him, and because she takes the time with him, he's happy then to open up and share with her."

Providers can use HIPAA compliant emails to engage with their patients so they can ask parents if they would like to receive updates on their child's progress or if they have any specific concerns they would like to address during appointments. Another example could be if the child's behavior indicates possible pain or discomfort, the provider can ask the parent if they have noticed any changes at home that could be contributing to this behavior.

 

Supporting communication with schools

Childhood arthritis affects many aspects of a child's daily life, including their education. Pain, stiffness, fatigue, and reduced mobility may require accommodations that allow children to participate safely at school.

The pediatric rheumatology study found that healthcare professionals often supported children by communicating directly with schools. One parent shared, "The occupational therapists have been involved in getting letters sent to school when he's needed, like a phased return or saying that he needs a stool in science with a back on it."

HIPAA compliant email allows providers to securely send school accommodation letters, therapy recommendations, activity restrictions, return-to-school guidance, and documentation to teachers or school nurses, with appropriate authorization.

 

Supporting families

Childhood arthritis affects the entire family, as the parent experience study found that parents wanted healthcare professionals to recognize the overall impact that chronic pain has on family life. One caregiver described the emotional burden, stating, “I think it's only when you are living with it that you realise the massive effect that pain has psychologically on families… it would be nice for them to say, how is it affecting the family. Because it's like living with a big black cloud."

Another parent explained how quickly families must adapt, "You know, when you go in the hospital with a child that isn't walking, you're coming out of the hospital with a child that is in a wheelchair, you need to adapt your whole life for a completely different set of circumstances."

Providers can use HIPAA compliant emails to support these families. For example, they can send resources for coping with the psychological impact of chronic pain on families, or offer virtual support groups where parents can connect with others facing similar challenges.

 

Including the child in the conversation

The qualitative study found that parents valued healthcare professionals who included children in conversations about their pain as they asked age-appropriate questions and encouraged them to describe their pain. Parents recognized that while they could observe their child’s behavior, they could not fully speak for their child's pain.

As one parent explained, "I can't tell you what it feels like for her because I'm not her, and I don't experience pain in the same way. I think it is definitely a conversation between the healthcare professional and the child."

The study also found that children became more engaged when they were given opportunities to communicate independently. One parent described their daughter's growing confidence during appointments:

"So, I sat in on the first one, and I said, ' How do you feel? And she went mum, do you mind if I just, you know, on my own? And I said, well, no, you know, that was what I wanted in the first place."

Conversely, parents reported that children who remained on the sidelines of clinical conversations often struggled to express how they were feeling. As one caregiver notes, "He was like on the periphery of the conversation and couldn't say how he was feeling."

HIPAA compliant email can help continue these child-centered conversations with appropriate parental consent and in accordance with applicable privacy laws and organizational policies.

More specifically, providers can securely send age-appropriate educational materials, symptom-tracking tools, and self-management resources specific to the children. Providers can also use secure email to share visit summaries written in an accessible language or encourage older children and teenagers to prepare questions before their next appointment.

Read also: How patient-centered communication improves patient outcomes

 

FAQs

Do providers need patient consent for HIPAA compliant emails?

Yes, a provider must get explicit patient consent before sharing their PHI through HIPAA compliant emails.

Learn more: A HIPAA consent form template that's easy to share

 

Are standard emails secure for discussing sensitive healthcare information?

No, standard emails do not provide the necessary encryption to protect sensitive healthcare information from potential breaches. So, providers must use a HIPAA compliant email platform, like Paubox, to safeguard patients' protected health information (PHI) during transmission and at rest.

 

What is considered protected health information (PHI) under HIPAA?

PHI includes any identifiable health information, like medical history, test results, treatment information, and health insurance information.