Excess body weight is a significant issue for children and young people with rheumatic conditions, as obesity can contribute to systemic inflammation. Among children aged 2 to 15 years in the general population, approximately 15% are living with obesity.1 In comparison, obesity has been reported in 5% to 23% of patients with juvenile idiopathic arthritis,2 suggesting that it is also a relevant concern within this clinical group. Obesity may exacerbate disease activity and complicate management by increasing levels of proinflammatory mediators, potentially affecting disease severity and response to treatment.3 Although evidence of the effect of obesity on rheumatic disease in adults is well established, pediatric research remains limited, and clinicians therefore require guidance on communicating the relevance of weight to disease activity and treatment outcomes.
Despite this need, no evidence-based guidance exists on how healthcare professionals should approach weight discussions within pediatric rheumatology, and clinicians lack structured frameworks for these conversations. These conversations are further complicated by the sensitivities involved; for example, many young people have limited control over diet, physical activity, and broader socioeconomic constraints, and poorly framed discussions risk causing feelings of helplessness, defensiveness, and/or stigma. As a result, clinicians may feel unsure about how to raise weight-related concerns, underscoring the need for tailored communication guidance for this setting. It is crucial to engage young people in healthcare encounters, as research suggests that their experiences vary and they may disengage or feel reluctant to participate if encounters are emotionally distressing.4
This article focuses on a Patient and Public Involvement and Engagement activity to guide further research and policy. It was co-produced and co-authored with young people with arthritis from the Your Rheum group. The Your Rheum group—comprising young people aged 11 to 24 across the United Kingdom with diagnosed rheumatic conditions—advises, inputs, and shapes adolescent and young adult rheumatology research.5
We would like to share reflections from recent patient involvement meetings with the Your Rheum group, where young people discussed their experiences of weight-related conversations with healthcare professionals. These reflections provide qualitative insights into the experiences of young people regarding weight discussions across pediatric rheumatology. The group was initially consulted to discuss our preliminary research findings on the relationship between obesity and juvenile psoriatic arthritis. During 2 Microsoft Teams calls, we presented preliminary data on how weight was associated with time to diagnosis, disease severity, well-being, functional ability, and psoriasis features. We explored how research into childhood weight and BMI could be applied in clinical practice. There were 14 children and young people in the first session and 11 in the second session. Through polls, open-ended questions, and group discussions, we asked young people to reflect on the research findings and their experiences of weight-related conversations.
Regarding an association between disease duration before diagnosis and body weight, most young people (79%, 11/14) said they were not surprised that diagnosis took longer in obese young people with arthritis, noting that “if you are overweight, doctors blame that for everything.” This raises an important point about the contrast between the experiences of young people and the clinical challenges in diagnosing. Healthcare professionals have noted that higher body weight can make it harder to assess joints (eg, distinguishing true swelling from extra adipose tissue, or inflammatory pain from mechanical pain), which could delay diagnosis. However, the young people did not mention these clinical challenges; they focused on the feeling that weight is often overemphasized or blamed for symptoms. Several young people expressed frustration at feeling dismissed, with comments such as “Take my arthritis seriously and treat me rather than blame my weight” and reflections of broader dismissal in others with JIA such as “Maybe they blame it on their weight instead of actually investigating.” Reflections such as “Obese people are ignored” and “Don’t fob us off because of weight” highlight the emotional effect of weight-related discussions and a recurring feeling of being blamed rather than supported. These insights show the importance of balancing recognition of potential diagnostic challenges with awareness of weight-related bias to avoid delays or harm in patient care.
Four key findings that emerged from the research were discussed: (1) children with obesity may experience longer times to diagnosis, (2) they tend to report higher levels of pain and poorer well-being, (3) they are more likely to present with psoriatic skin manifestations, and (4) obesity influences outcomes in adult psoriatic arthritis. Of these, the potential association between body weight and time to diagnosis was ranked as the most important issue. The second most important was the relationship between body weight and increased pain and poorer well-being, followed by the effect of weight on psoriatic skin manifestations.
When asked to reflect on a potential association between body weight and pain related to arthritis, young people expressed concern, frustration, and distress, with some describing pain as “debilitating” or feeling the need to “act on it” (Figure 1). These responses illustrate the complex emotional effect of weight-related issues in pediatric rheumatology and underscore the importance of approaching discussions with both sensitivity and support, recognizing the effect of communication on psychological well-being.
Word cloud illustrating the feelings of young people about weight and arthritis-related pain.
Many young people expressed a clear motivation to improve their health and engage in weight discussions when handled respectfully. All young people (100%) said they would want to know if their weight was linked to their condition (Figure 2). As one participant said, “If I could make any changes to positively affect my health, I would attempt to make them.” Another added that they “don’t want to be in pain” and wanted to know factors that could influence their health “so that it can make me recover faster.” When reflecting on how weight might affect pain, this was described as “upsetting” but also “helpful,” highlighting that these conversations, though sometimes difficult, should not be avoided. A comment that captured much of the feedback from the meeting was, “It’s more about how I’m told; of course I want to know about my health.”
Response from children and young people in the Your Rheum group to the question, “If your weight could link to your disease, would you want to know?”
After sharing the results with the young people from the group, we wanted to ask them about their prior experiences talking about weight in a healthcare setting. Having had a conversation about weight with any healthcare professional was reported by 79% (11/14) of young people. The young people noted that weight is a frequent topic in consultations, often raised regardless of health status.
Emotions reported when reflecting on weight-related discussions in rheumatology included feeling “self-conscious” and “embarrassed,” with comments suggesting that these conversations can amplify negative body image. This is especially significant during adolescence, a period marked by increased vulnerability to self-esteem difficulties and mental health challenges.6 Research from the Millennium Cohort Study shows that low self-esteem and poor body image in early adolescence strongly predict emotional difficulties, including anxiety and depression, by age 17.7
The young people identified doctors (67%, 8/12) and parents or carers (33%, 4/12) as preferred people to discuss weight with. None selected teachers, social media, friends, lecturers, or employers. Young people emphasized the need for discussions to take place in a supportive context, where weight is discussed “only when it is relevant to a physical symptom” as part of their disease rather than blaming the patient. Reflecting on how healthcare professionals discussed weight, one young person said, “They constantly talk about how it’s good I’m skinny, and it’s a constant reinforcement to stay skinny,” highlighting the risk of harmful or unintended messages, even when comments are meant positively.
Based on this feedback, young people prefer to have these discussions with healthcare professionals, provided the information is clearly explained as relevant to their condition and is communicated in appropriate and sensitive language. Discussions could explore whether the young person has had past experiences, such as eating disorders, that may affect their comfort in discussing weight. As one young person expressed, “Ask if I’ve had any issues with weight in the past (eg, eating disorders).” Support could also include practical resources. One young person stated that “I would like leaflets that I can read in my own time; it can feel like being told off when a doctor brings it up.” Providing written materials and asking about past experiences could make a significant difference in helping young people feel respected, informed, and supported rather than judged.
Separately, some young people did not always understand the clinical relevance of discussing weight in relation to their condition. This may reflect a broader lack of health education and insufficient explanation from clinicians about why weight is being raised in the context of long-term health outcomes. It is therefore important for healthcare professionals to frame weight discussions empathetically and explain the rationale for raising it, connecting it explicitly to health and disease management. Clinicians should also clarify that discussions are about body composition and health, not just the number on the scale, to avoid feelings of blame or weight bias.
Feedback from the involvement session highlighted several positive approaches that could be used to sensitively engage and involve young people in similar research in the future. Children and young people appreciated the use of online poll platforms (Mentimeter), which allowed easy and anonymous input into the group discussion through cell phones and which supported interactive features such as polls, rating scales, and word clouds, making the format particularly engaging for a younger group. First, the lack of pressure to respond was reassuring, given the sensitive nature of the topics discussed. Second, they reported that it was helpful to hear experiences from others, fostering a sense that they were not alone. Third, they described the environment as “safe, inclusive, and supportive.” Constructive suggestions for improvement included clearer signposting to additional sources of support following discussions to help young people access further guidance after discussing sensitive topics.
We propose the development of a framework for weight communication in pediatric rheumatology, co-designed with young people. Additionally, involving parents and healthcare professionals in this process will help address uncertainty or discomfort and ensure support at home. A collaborative approach could foster more constructive conversations about weight and health, empowering young people and improving outcomes in children and young people with rheumatic disease.
We hope that sharing these perspectives will encourage reflection and lead to improved communication strategies in rheumatology and beyond, helping young people feel informed, supported, and understood.
ACKNOWLEDGMENT
We thank the young people involved in Your Rheum and their families for their input and support. We thank the Your Rheum administrators at Arthritis UK for their support.
Footnotes
CONTRIBUTIONS
ENAAXBB: formal analysis, investigation, methodology, validation, visualization, writing – original draft, writing – review & editing. AC, HL: conceptualization, funding acquisition, methodology, supervision, writing – review & editing. EB: resources, validation, writing – review & editing. CW: resources, methodology, writing – review & editing. SSW: supervision, conceptualization, funding acquisition, data curation, methodology, validation, writing – review & editing.
FUNDING
This work was supported by the Brit-PACT Research Grant. Your Rheum is supported by Arthritis UK. SSW is supported by the Medical Research Council (MR/W027151/1).
COMPETING INTERESTS
The authors declare no conflicts of interest relevant to this article.
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