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. 2026 Jan 18;28:39. doi: 10.1186/s13075-026-03734-9

Mental health needs of children and young people with arthritis

Polly Livermore 1,2,3,, Klaudia H Kupiec 1,2,#, Andrea M Knight 4,#
PMCID: PMC12896321  PMID: 41549272

Abstract

Juvenile Idiopathic Arthritis (JIA) is the most common paediatric rheumatological condition, affecting approximately 1 in 1,000 children and young people. It is a heterogeneous chronic disease characterised by persistent joint inflammation, often requiring long-term management to achieve remission or inactive disease. The unpredictable nature of JIA places children and young people at increased risk of mental health difficulties, which are associated with greater pain, disability, disease activity, and reduced quality of life. Emerging evidence highlights the bidirectional relationship between psychological well-being and disease outcomes, with early depressive symptoms predicting poorer physical functioning. Given that half of all mental health disorders emerge during adolescence, early identification and intervention are critical. Transition to adult services represents another vulnerable period, where psychosocial support and effective family functioning can improve readiness and long-term outcomes. Mental health challenges remain under-recognised within paediatric rheumatology, despite persisting into adulthood and exacerbating disease burden. Recent guidance from the Childhood Arthritis and Rheumatology Research Alliance (CARRA, 2025) underscores the need for routine assessment and integrated management of psychological well-being. This review summarises the prevalence, risk factors, and management strategies for mental health problems in JIA, aiming to inform holistic, multidisciplinary care.

Introduction

Juvenile Idiopathic Arthritis (JIA) is the most common paediatric rheumatological condition. JIA is characterised by joint inflammation of unknown origin and can be heterogeneous in presentation [1]. The International League of Associations for Rheumatology (ILAR) classification of JIA identified 7 subtypes of JIA based on clinical presentation and laboratory features aimed at tailoring treatments to improve outcomes [2]. Approximately 1 in 1000 children and young people are affected by JIA [3]. As there is no cure for this condition, long-term disease management is required with the goal to achieve inactive disease or remission [4].

Living with a rheumatological condition such as JIA is often associated with frequent hospital appointments, and intensive treatment regimens which have educational and social implications, and impacts on peer relationships and participation in activities. Moreover, children and young people can experience flares despite being on treatment, and the unpredictable ups and downs associated with the disease can cause children to feel stuck between hope and despair [5]. Unpredictability of chronic diseases is not just confined to Rheumatic conditions, for example those living with diabetes are well verse to “expect the unexpected” [6] and those living with sickle cell disease need to manage unpredictable episodes of pain, in both onset and duration [7]. The resulting emotional distress due to the unpredictable nature of the disease course of chronic conditions, places children and young people at an increased risk of developing mental health problems. Mental health problems in JIA are associated with an increased disease burden and decreased quality of life such as reduced functional ability and lower physical activity levels [8] greater functional disability and increased severity of disease activity [9], increased pain and perceived stress [10], as well as transition challenges [11, 12].

The impact of JIA on health-related quality of life and well-being may persist over time which can lead to challenges across the lifespan. Hanns et al. (2018) showed that in early adolescence, young people who experienced high levels of depressive symptoms at baseline, reported increased pain perception and disability a year later [13]. This suggests that emotional distress further amplifies disease-related factors. The WHO World Mental Health surveys established that half of mental health disorders in the general population are diagnosed in late adolescence and early adulthood [14] which suggests that early intervention is key. Therefore, early screening and preventative interventions are needed to support children with JIA as they are at an increased risk of developing mental health problems.

Additionally, facilitating a smooth transition from paediatric to adult services needs to be prioritised as transition is associated with a range of psychosocial factors and improved transition readiness has been found to be related with greater social support, family functioning, health-related quality of life, lower levels of disease activity and lower anxiety and depression levels in both adolescents and young adults [11, 12]. Moreover, the disease burden often persists into adulthood, and adults with JIA continue to experience psychosocial problems, impaired physical functioning and increased levels of pain and fatigue [15, 16]. Longitudinal data suggests that adults with JIA who had at least 15 years of active disease, showed a significant decline in their quality of life between the 15- and 30-year follow-up, in relation to physical disability, pain, fatigue, well-being [16]. This further exacerbates the need to improve well-being and mental health support in children and young people with JIA to provide them with coping mechanisms that will sustain them over the life course.

Guidance statements from the Childhood Arthritis and Rheumatology Research Alliance (CARRA) published in August 2025, further stress the importance of addressing mental health concerns in children and young people with rheumatological conditions. The guidance recommends that it is imperative to assess and manage mental health conditions better to improve well-being and quality of life [17].

This current review summarizes the prevalence, challenges and risk factors for mental health problems in children and young people with JIA, as well as approaches to assessment and management for paediatric rheumatology teams caring for these patients.

Prevalence of mental health problems in children and young people with JIA

A systematic review showed that prevalence rates fluctuated highly with approximately 7%−64% of children and young people living with JIA suffering from anxiety, and between 7% and 36% suffering from depression [18]. Although mood and anxiety disorders are most commonly researched due to their high prevalence rates presenting a global burden, children and young people with JIA are also at an increased risk of suicidal behaviours, sleeping disorders, psychosis [19] and adjustment disorder [20, 21].

Varying rates for the prevalence of mental health disorders in JIA can be partially explained by differences among study populations in clinical features associated with adverse mental health such as functional limitations, active disease and the inability to achieve remission [22, 23], number of medications taken [22], and pain [13, 22, 24]. Differences in mental health prevalence rates have also been observed between different JIA subtypes based on ILAR classifications with research suggesting that children and young people with poly JIA - in particular rheumatoid factor negative poly JIA – are more at risk of developing a mental health disorder than other subtypes [13, 20, 22]. However, the reasons as to why children and young people with poly JIA are at an elevated risk need to be further explored to understand the underlying mechanisms. Poly JIA is associated with higher joint involvement and higher disease activity which could explain why these children are more vulnerable, but this needs to be further researched. Additionally, literature indicates a potential contributing role of systemic inflammation in children with depression [25] but this has not been well-studied in children with JIA. One study found depression and anxiety to be associated with disease activity and disability, but not with serum markers of inflammation (i.e., interleukin-6, C-reactive protein) [26]. Further studies are needed to examine the relationship between inflammation and mental health disorders in JIA.

Moreover, different methods of assessment are often employed which also explains some of the variance. For example, some researchers use psychiatric evaluations with the help of structured diagnostic interviews to assess psychiatric disorders using the Diagnostic and Statistical Manual of Mental Disorders (DSM) DSM-III-R criteria [27, 28], or the DSM-IV [29], while others rely on the International Classification of Diseases ICD-10 [1921, 30, 31]. However, a high proportion of screening and assessments are based on a range of different standardised and validated clinical self-assessments that capture various mental health symptoms with different outcomes [8, 24, 29, 3241]. Understanding which tools are suitable for a comprehensive assessment to help children and young people at risk is vital as a study by Fawole et al. (2021) found, that in addition to children and young people who received a mental health diagnosis from a clinician, a further 18% of children and young people with JIA reported experiencing mental health symptoms that were not formally diagnosed [42].

Furthermore, a recent review by Palman and McDonagh (2020) highlighted additional challenges for children and young people with rheumatological conditions [41]. For example, anxiety relating to disease management such as needle phobia and procedural anxieties may not be captured appropriately with existing standardised measures [4345].

Challenges & complexities: risk factors and impact on outcomes

When mental health challenges coexist with JIA they can amplify the impact of the disease, exacerbating the child’s overall symptom burden and disease management challenges, affecting multiple domains of life. The current review highlights challenges in relation to the following 5 domains: pain, education, adherence, transition, and family.

Pain

Pain and mental health in JIA are bidirectionally linked - pain increases emotional strain, and emotional difficulties can intensify the experience of pain [46]. Anxiety and depressive symptoms in adolescents with JIA have been found to consistently associated with greater pain, disability, and overall disease burden, with a higher baseline depression score predicting worse pain at one and four years [13]. Experiencing ongoing pain despite treatment, or failure to achieve remission, has also been shown to be strongly linked to depression, emphasizing further how poorly controlled pain can adversely affect mental health [22].

Education

Anxiety and low mood can impact upon a child’s education with those with JIA often experiencing reduced school attendance and difficulty participating [47, 48]. Higher depressive symptoms in JIA patients have also been shown to be significantly associated with poorer school performance and increased truancy, providing direct evidence that mental health negatively impacts academic engagement [22]. It is important to note that pain also plays a significant role on education and vocational development in those with JIA [43]. Having a supportive school is important as it can mediate some of the mental health burden and help provide mental health support [49], while schools who struggle to support a child’s health condition can affect a child’s mental health negatively. A review focusing on how school experiences can impact upon mental health of children and young people with chronic conditions, such as hearing loss, cystic fibrosis and type 1 diabetes, found that school absenteeism, feeling different, stigma, bullying, teacher and student relationships are associated with educational, social integration and psychological challenges [50]. Negative judgements of others and peer bullying in particular in Physical Education (PE) classes have been reported by young people with JIA [51]. This needs to be addressed as bullying increases the risk of anxiety, depression and self-harm [52]. Recommendations on how to support children with chronic conditions in schools in order to promote their well-being and mental health have been proposed. These suggest that support should be provided to assist with school absences, and compliance with medications, whilst also addressing the need for teacher training, and integration by facilitating social acceptance of children and young people with JIA and other chronic conditions [53, 54]. It is also important to note that there is a discrepancy between parents’ and schools’ views on managing a child or young person’s JIA, with schools reporting that they were confident in managing their pupils’ JIA, whilst parents reported a lack of understanding from school staff [55]. These discrepancies should not be ignored as successful integration and tailored support is required to improve children’s well-being to promote academic achievement. Poor relationships between students and teachers have been identified as a predictor of childhood psychiatric disorders [56] and lower academic achievement [57].

Adherence

Mental health is an important factor in adherence, with the two being shown to be closely linked [58]. However, adherence is rarely addressed in the JIA literature in the context of mental health. Survey data from the UK reveal that anxiety around injections and reluctance to take medication are common, suggesting that emotional distress can impair adherence behaviour [49]. However, most research on anxiety and depression among youth with JIA focuses on prevalence, disease activity, quality of life, and family mental health—without directly linking these mental health issues to treatment adherence. Systematic reviews of adherence behaviours note that while medication and exercise adherence are documented, adherence to psychological therapies also remains virtually unstudied in JIA [59].

Transition

Coping with a chronic health condition as an adolescent adds extra challenges to those already experienced in the physical, social and mental domains. Pubertal changes, developing identity, school pressures and gaining independence are just some of the areas which can be impacted from taking medications, attending appointments and coping with illness. The process of moving health care from paediatric services to adult services, is otherwise known as ‘transition’. The EULAR/PReS Standards for Transitional Care explicitly emphasises the importance of mental health and psychosocial wellbeing during this time, recognising transition as a critical and vulnerable time that requires psychological support in transition plans [60]. Young people already struggling with their mental health are also at risk from inadequacies of the transition process and limited tools to support timely transfer, both being detrimental to the individual [43].

Family

The coexistence of JIA and mental health difficulties in the child can have pervasive emotional and psychological consequences for the entire family, with parents/carers often reporting heightened levels of anxiety, depression and perceived vulnerability [18, 61]. Higher levels of parental depression and anxiety have been found to be associated with higher psychopathology scores among children with juvenile rheumatoid arthritis [62]. Furthermore, reported parental elevated stress levels and perceived reduced quality of life have been attributed to their child’s disease activity and illness uncertainty [63, 64]. In a UK multicentre study, 82% (218) parents/carers reported that their child’s diagnosis impacted their own mental health and 47% of parents/carers reported that a JIA diagnosis had impacted siblings’ mental health (e.g., anxiety/low mood), underscoring wider family effects [58]. Psychosocial factors in parents/carers are associated with (and can predict) later child pain, reinforcing a bidirectional child–family loop [46, 65].

Screening and assessment

Given the burden of mental health problems in the JIA patient population and adverse impact on outcomes, it is important to effectively identify patients who are struggling and facilitate management of mental health problems as part of overall care. All children and young people with JIA would likely benefit from mental health screening to optimize identification of mental health problems. Since these patients and their families often identify rheumatologists as their closest and most trusted providers [42, 66], rheumatology teams can play an important role in identifying and addressing mental health problems [67, 68].

Screening approaches in paediatric rheumatology have mostly focused on identifying symptoms of depression, anxiety and suicidal ideation for adolescents and younger people 12 years and older. This aligns with recently published American College of Rheumatology Guidance for Addressing Mental Health Concerns in Paediatric Rheumatology [17]. These guidance statements recommend at least annual screening in paediatric rheumatology for depression and anxiety symptoms using patient-reported psychometrically validated measures in a private setting. More frequent screening may better enable capture of elevated symptoms, as reflected in the recommendation for additional screening during periods of stress, such as disease flares and psychosocial changes, as well as ongoing discussion about mental health between screening intervals [17]. Consideration of potential inequities in evaluation and access to mental health resources is also important [17].

Several short self-report tools are available for routine assessment of depression, anxiety and suicidal ideation. These include tools such as the Patient Health Questionnaire-4 [69, 70] as a brief combined tool to assess both depression and anxiety, as well as brief measures specifically assessing depression (e.g. Patient Health Questionnaire-9) [71, 72], anxiety (e.g. GAD-7) [73, 74] and suicidal ideation (e.g. ASQ) [75] separately. These tools are validated for adolescents, available free of charge and in several languages, and there are also tools available for assessment of younger children down to age 4 years (see Table 1). Rheumatology sites may select other screening tools, based on preferences and existing processes at their practices. When implementing screening, a protocol to connect the youth to resources should be in place, particularly for those with severe symptoms or suicidal ideation. It is important to note that these screening tools are not diagnostic but rather detect clinically elevated symptoms that warrant further assessment. Mild symptoms may be further addressed by the patient’s primary care provider or non-urgent referral to a mental health provider (e.g. counsellor/therapist, social worker, psychologist); moderate to severe symptoms, including suicidal ideation, should prompt urgent referral to a mental health specialist (e.g. psychiatrist) [17].

Table 1.

Mental health screening measures for children and Adolescents*

Measure Description Age
Range
Time to complete
(min)
Available Languages

Patient Health Questionnaire–4

(PHQ-4) [69, 70]

4 item scale for depression (2 item subscale) and anxiety (2 item subscale).

Raw subscale score > = 3 probable depression/anxiety; combined score for overall psychological distress: 0–2 normal, 3–5 mild, 6–8 moderate, 9–12 severe 3–5

12+ 1 Over 50 translations, including Spanish, German, Greek, Chinese, Persian, Polish, Korean, and Filipino.

Patient Health Questionnaire–9

(PHQ-9) [71, 72]

9 item scale for depression.

Raw scores: 5–9 = mild; 10–14 = moderate; 15–19 = moderately severe); 20–27 = severe.

12+ < 5 Over 50 translations, including Arabic, Chinese, English, French, Hindi, and Spanish

Generalized Anxiety Disorder-7

(GAD-7) [73, 74]

7 item scale for anxiety.

Raw scores: 5–9 = mild; 10–14 = moderate; 15–21 = severe.

12+ < 2 Over 50 translations, including Arabic, Chinese, English, French, Hindi, and Spanish
Screen for Childhood Anxiety Related Emotional Disorders (SCARED) [76, 77]

41 item scale for anxiety.

Raw scores ≥ 25 indicate clinically significant anxiety.

8–18 10 Arabic, Chinese, Czech, English, Finnish, French, German, Hebrew, Italian, Spanish, Tamil, Thai
The Center for Epidemiological Studies Depression Scale for children (CES-DC) [78]

20 item scale for depression.

Raw scores 15 and above indicate significant depression.

6–17 5 English

Mood and Feeling Questionnaire for children

(MFQc) [79, 80]

Short (13 item) and long (33 item) versions for depressive symptoms.

Raw score 12 + on the short form and 27 + on the long form indicate clinically elevated symptoms.

6–17 5–10 Arabic, Chinese, English, Filipino, Finnish, German, Norwegian, Portuguese, Spanish and others
Patient Symptom Checklist 17 items (PSC-17) [81]

17 item scale for behavioral health problems.

Raw score > = 15 indicate possible behavioral health disorder; sub-scores for certain group of questions indicate internalizing, externalizing and attention problems

4–17 < 5 English, Spanish, Chinese, Vietnamese, Indonesian, Norwegian
Patient Reported Outcomes Information Measurement System (PROMIS) [82, 83]

8 item scales for depressive and anxiety symptoms.

Raw scores are converted to standardized T-scores:<50 = Normal; 50.0—54.9 = Mild; 55.0—64.9 = Moderate; 65 + = Severe.

Available in pediatric (8–17) & adult versions (18+) < 5 Many translations including Arabic, Bengali, Chinese, Czech, Dutch, English, French, German, Gujarati, Hindi, Hungarian, Italian, Japanese, Kannada, Korean, Malayalam, Marathi, Polish, Portuguese, Punjabi, Russian, Spanish, Tamil, Telugu, Ukrainian
Ask Suicide-Screening Questions (ASQ) [75] 4 questions + 1 acuity question (if needed) -> identifies those who need further safety/mental health assessment 8+ 1 > 20 translations including Arabic, Chinese, Filipino, French, Hebrew, Hindi, Italina, Japanese, Spanish, Vietnamese

*Screening measures detect symptoms and are not diagnostic. A positive screen indicated by a score above the cutoff indicates a need for further assessment to determine the presence or absence of a mental health disorder, and the appropriate treatment. All listed measures are publicly available to our knowledge, although there may be specific requirements for use per the measure developers. The list of available languages may not be complete as newer language translations become available

Discussion of results at the time of screening also provides important and helpful context for understanding the reported symptoms [17]. For example, factors contributing to depression and anxiety symptoms may include stress related to chronic disease burden, pain, changes in appearance, physical limitations and treatment factors (e.g. needle phobia). In addition, other contributing factors may include family and socioeconomic factors, developmental and behavioural issues, and substance abuse. Health-related behaviours associated with depression and anxiety may also be present, such as medication non-adherence, medical visit non-attendance, and somatic symptoms. Discussion of screening results can assess for these potential contributors and behaviours to help tailor interventional strategies for children and young people with JIA. Anecdotally some Paediatric Rheumatology Centres, especially those in North America, are beginning to also assess parental and sibling mental health, however, this comes with challenges, such as the necessity to have protocols in place for safeguarding purposes when positive findings are identified.

Most clinics suffer from suboptimal resources to address mental health, however, the feasibility and acceptability of mental health screening in the paediatric rheumatology setting has been shown [84, 85]. Clinics are increasingly implementing mental health screening [8688] and integrated care models [89, 90] and automation of screening processes within electronic health records has enabled less burdensome administration [91]. Non-rheumatologist providers may also assist with screening processes and facilitating connection of youth to intervention, depending on personnel available at individual clinics. These may include social workers, child life specialists, medical assistants, nurses, nurse practitioners, psychologists and psychiatrists. If not available in the rheumatology setting, other clinicians such as primary care physicians and adolescent medicine specialists may help with further assessment [92] and management of depression and anxiety symptoms with pharmacological and non-pharmacological therapies.

Of note, some rheumatologists, paediatricians and primary care physicians may not be adequately trained to identify and refer those at risk [43, 93, 94]. Training opportunities should also be available for paediatric rheumatologists and wider multi-disciplinary teams to better support affected children and young people. For example, a paediatric rheumatology multi-disciplinary team mental health educational workshop increased healthcare professionals’ competence levels by 85%, focusing on (1) understanding the impact of mental health, (2) identifying children at risk, (3) performing routine screening and (4) understanding the role of different interventions [95]. These types of educational activities could help increase clinicians’ skills and capacity for addressing mental health concerns in paediatric rheumatology.

Management, interventions and treatment

Management of mental health concerns is directed by level of severity of symptoms. While moderate to severe symptoms should prompt referral to a mental health specialist, there is less clear guidance for management of mild to moderate mental health symptoms in paediatric rheumatology [17]. Despite this gap in guidance, the need for mental health treatment in young people with JIA is quite high. A recent study in Germany found that 68% (N = 65) of 12–20-year-old children and young people with JIA who were diagnosed with a mental health condition (as per ICD-10-GM) were on medication, received psychotherapy or both [20]. Due to the high number of children and young people receiving treatment for a mental health condition, it is important to understand what treatments are effective in treating children and young people with JIA and improving their well-being. Additionally, in order for mental health resources to be helpful, children and young people prefer tailored support for paediatric rheumatological diseases [42], suggesting that currently available generic treatments and interventions aimed at improving mental health and well-being generally, may not be suitable for children and young people with JIA in achieving beneficial results. While there is a paucity of literature on interventions targeting lower severity mental health symptoms in children with JIA and other rheumatological diseases, several studies support potential utility and need for further study of such interventions.

A systematic review by Cohen et al. (2017) found three studies that evaluated psychosocial therapies for children and young people with JIA [96]: parent-guided daily massage sessions compared to a control group that provided relaxation therapy [97]; a randomised controlled trial (RCT) comparing an 8-week cognitive behavioural therapy (CBT) group intervention programme to children and young people who were on a waiting list [98]; and an internet-based self-management programme compared to a control group receiving weekly calls from a trained research assistant [99]. Field et al. (1997) found that children in the massage group as compared to the relaxation group showed lower levels of anxiety after massage sessions as assessed by behavioural observations. However, most notably the intervention showed a reduction in pain as measured by self-reported patient and parent questionnaires but also a reduction in incidence and severity of pain as assessed by a physician [97]. Similarly, Loholt et al.’s (2015) CBT intervention was primarily focused on pain management, although a reduction in pain was not found [98]. Lastly, Stinson et al.’s (2010) 12-week long internet-based self-management programme of providing disease-specific information, self-management strategies and social support from a coach with telephone support, helped to increase disease specific knowledge, and reduced pain [99]. However, the outcome measures employed in these three studies focused primarily on reducing pain and improving health-related quality of life relating in particular to disease-specific symptoms and presentation, and did not significantly improve psychosocial function, or reduce anxiety, or stress. Moreover, as these three studies were investigating acceptability, tolerability and feasibility of the intervention, participant numbers were small which makes it more difficult to evaluate the potential impact of these interventions on the wider population.

More recently, a study investigated the impact of art therapy in paediatric rheumatology clinics to improve well-being. Watts et al. (2019) investigated the engagement and acceptability of their art therapy intervention in clinical care, in addition to evaluating which children are likely to be referred to them and when [100]. All rheumatological conditions were included in their sample, 50% (N = 49) of which were diagnosed with JIA. Overall, the intervention was well tolerated, and the study showed that children and young people were more comfortable to talk about their emotions, and were less anxious. The intervention also increased their confidence, and made the hospital visit a more positive experience. The team identified that peak age for referrals was for 7-to 12-year-old children, and most referrals were relating to coping with the diagnosis or the emotional impact [100]. These findings suggest that support should be offered earlier, highlighting the importance of early recognition and intervention to optimise mental health for children and young people.

Considerations

Despite more updated guidelines proposing to address the mental health burden of children and young people with rheumatological conditions, and resources being invested in providing mental health screenings to children and young people with JIA and other rheumatological conditions, key challenges and considerations to accessing mental health screening and services need to be addressed as well. A qualitative study investigating barriers and facilitators for accessing mental health care in young people and young adults with rheumatological conditions, and their parents found that main barriers to accessing mental health support were stigma, nervousness and fear of talking about mental health, uncertainty about getting help, parental emotional burden, minimisation by doctors, and limited access to mental health professionals [66]. In the UK, there is an unequitable provision of psychology to children and young people with rheumatological conditions, with 7 (48%) out of 15 surveyed specialist hospitals not having access to a named psychologist as part of their rheumatology team [101]. Overall, challenges of accessing mental health support included lack of provision, lack of time, and difficulties for those living in larger geographical areas [101]. Unequal access and lack of resources have also been identified as barriers to mental health care in the United States and Canada. A web-based survey for CARRA members found that barriers to screening included lack of staff, lack of time, limited availability of mental health providers, lack of knowledge about mental health and discomfort discussing mental health problems from care providers, willingness of children, young people or their parents and carers to be screened as well as language barriers. Barriers to treatment included long waiting lists, limited availability of locations of providers, uncertainty relating to where to obtain services, time burden, perceived lack of usefulness, stigma, language and communication barriers, distrust as well as financial implications (such as cost to family, insurance concerns, and transportation problems) [66].

It is therefore important for the paediatric rheumatology community to continue to advocate for timely access to mental health services for their patients with JIA, and to build the body of mental health research in the field to increase evidence for mental health supports. It must also be recognised that there is a range of mental health interventions, from psychoeducation to counselling to evidence-based psychotherapy to psychotropic medications, depending on symptom severity. Only a small fraction of patients may need urgent intervention, or evaluation by a psychologist or psychiatrist. This is highlighted by the psychosocial preventative health model, based on the work of Kazak and colleagues (2015) and adapted for paediatric rheumatology [102], in which early identification of psychosocial distress and tiered supports match identified levels of need and risk. Therefore, stepped and stratified approaches to care help maximize utilization of limited resources by reserving highly specialized care for young people with more severe mental health concerns [103].

Suggestions for the future

As shown in this review, children and young people with JIA are at an increased risk of developing mental health problems, therefore, future research should focus on identifying suitable interventions that address mental health problems alongside the disease to treat a child more holistically. In order to maximise best outcomes a systems approach focusing on the family and educational context should be utilised. Moreover, considering the large range of screening tools that are available, further guidelines should focus on if screening could be simplified by evaluating which measure or measures (if different measures are needed for different mental health disorders), is/are the best fit that could be used globally to allow a more standardised approach to evaluate outcomes. In order for screening to be inclusive, standardised measures should be easily available to clinical teams without any cost implications that will cause a burden to health services. Additionally, barriers to accessing mental health support need to be addressed to provide a more equitable distribution to promote the well-being of all children and young people who are at risk.

Potentially promising approaches for improving screening and intervention access include partnering with patient organisations to advocate for resources, training in mental health care for paediatric rheumatology clinicians and allied health professionals, strengthening care partnerships with primary care doctors and adolescent medicine specialists. Peer support interventions, utilising the lived experience of patients themselves to promote coping and resilience, may also be helpful in the context of limited mental health services. Additionally, technology may also be leveraged to increase access to care through self-management apps and virtual administration of counselling and coaching, and evidence-based therapies such as mindfulness and cognitive behavioural therapy.

Conclusion

This review highlights current advances, challenges and opportunities in the field of mental health for children and young people with JIA. In line with the guidance statements from the Childhood Arthritis and Rheumatology Research Alliance (CARRA) which were published earlier this year that stress the importance of addressing mental health concerns in children and young people with rheumatological conditions, this review highlights the crucial role of early intervention to improve well-being of children and young people to improve both physical and mental health related outcomes in children with JIA. There is substantial evidence that shows that mental health screening in paediatric rheumatology clinics is well tolerated and accepted. However, more research needs to be conducted to understand the benefits of mental health interventions to understand what treatments should be recommended. A multi-faceted, family-centred strategy is recommended to address risk factors and the complex challenges of medication adherence, transition, schooling, pain, and family functioning, with the ultimate goal of reducing disease burden and improving quality of life for children and their families.

Acknowledgements

None.

Authors’ contributions

P.L., K.K and A.K. wrote the main manuscript text and A.K. prepared Table 1. All authors reviewed the manuscript.

Funding

No funding.

Data availability

No datasets were generated or analysed during the current study.

Declarations

Ethics approval and consent to participate

Not applicable.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.

Footnotes

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Klaudia H. Kupiec and Andrea M. Knight contributed equally to this work.

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Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Data Availability Statement

No datasets were generated or analysed during the current study.


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