Parent Perspectives on Addressing Emotional Health for Children and Young Adults With Juvenile Myositis.

OBJECTIVE: To assess parent perspectives regarding the emotional health impact of juvenile myositis (JM) on patients and families, and to assess preferences for emotional health screening and interventions. METHODS: Parents of children and young adults with JM were purposively sampled for participation in focus groups at the Cure JM Foundation National Family Conference in 2018. Groups were stratified by patient age group (6-12, 13-17, and 18-21 years), and conversations were audiorecorded, transcribed verbatim, and co-coded via content analysis, with subanalysis by age group. A brief survey assessed preferences for specific emotional health interventions. RESULTS: Forty-five parents participated in 6 focus groups. Themes emerged within 2 domains: emotional challenges, and screening and interventions. Themes for emotional challenges comprised the impact of JM on: 1) patient emotional health, particularly depression and anxiety; 2) parent emotional health characterized by sadness, grief, anger, guilt, and anxiety; and 3) family dynamics, including significant sibling distress. Subanalysis revealed similar themes across age groups, but the theme of resiliency emerged specifically for young adults. Themes for emotional health screening and interventions indicated potential issues with patient transparency, several barriers to resources, the facilitator role of rheumatology providers, and preferred intervention modalities of online and in-person resources, with survey responses most strongly supporting child/parent counseling and peer support groups. CONCLUSION: JM is associated with intense patient and family distress, although resiliency may emerge by young adulthood. Despite existing barriers, increasing access to counseling, peer support groups, and online resources with rheumatology facilitation may be effective intervention strategies.

COVID-19 and myositis - unique challenges for patients.

OBJECTIVE: The COVID-19 pandemic and the subsequent effects on healthcare systems is having a significant effect on the management of long-term autoimmune conditions. The aim of this study was to assess the problems faced by patients with idiopathic inflammatory myopathies (IIM). METHODS: An anonymized eSurvey was carried out with a focus on effects on disease control, continuity of medical care, drug procurance and prevalent fears in the patient population. RESULTS: Of the 608 participants (81.1% female, median (s.d.) age 57 (13.9) years), dermatomyositis was the most frequent subtype (247, 40.6%). Patients reported health-related problems attributable to the COVID-19 pandemic (n = 195, 32.1%); specifically 102 (52.3%) required increase in medicines, and 35 (18%) required hospitalization for disease-related complications. Over half (52.7%) of the surveyed patients were receiving glucocorticoids and/or had underlying cardiovascular risk factors (53.8%), placing them at higher risk for severe COVID-19. Almost one in four patients faced hurdles in procuring medicines. Physiotherapy, critical in the management of IIM, was disrupted in 214 (35.2%). One quarter (159, 26.1%) experienced difficulty in contacting their specialist, and 30 (4.9%) were unable to do so. Most (69.6%) were supportive of the increased use of remote consultations to maintain continuity of medical care during the pandemic. CONCLUSION: This large descriptive study suggests that the COVID-19 pandemic has incurred a detrimental effect on continuity of medical care for many patients with IIM. There is concern that delays and omissions in clinical care may potentially translate to poorer outcomes in the future.

Introducing new tools for assessment of parent- and child-reported outcomes in paediatric rheumatology practice: a work in progress.

It is increasingly recognised that regular assessment of parent- and child-reported outcomes (PCROs) in routine paediatric rheumatology practice may help to increase the quality of care of children with rheumatic diseases. However, most of the instruments available for assessment of PCROs have remained essentially research tools and are not routinely administered in most centres. Recently, new multidimensional questionnaires for paediatric rheumatic diseases have been devised. These tools have been specifically designed for regular administration in a busy clinical setting and have the advantage over other clinical measures of incorporating all main PCROs in a single instrument. This review describes briefly the multidimensional questionnaires developed for the assessment of PCROs in children with juvenile idiopathic arthritis, juvenile dermatomyositis, and juvenile systemic lupus erythematosus and discusses the rationale underlying their creation. Furthermore, it illustrates the methodology and benefits related to the use of multidimensional questionnaires in the collection of standardised quantitative data.

The differential effect of child age on the illness intrusiveness--parent distress relationship in juvenile rheumatic disease.

OBJECTIVE: Examine age-related patterns of association between parent-reported illness intrusiveness and parent distress in parents of youth with juvenile rheumatic diseases (JRDs). STUDY DESIGN: Cross-sectional multiple regression analysis tested child age as a moderator in the illness intrusiveness-distress relationship. PARTICIPANTS: Fifty-two parents of children ages 9-17 diagnosed with JRD. MAIN OUTCOME MEASURES: The Illness Intrusiveness Scale--Parent Version and the Brief Symptom Inventory. RESULTS: Parent-reported illness intrusiveness demonstrated a significant main effect on distress for all parents in the sample. This was qualified by an Illness Intrusiveness x Child Age interaction. Illness intrusiveness was found to be significantly related to distress among parents of older youth, but was only marginally related to distress for parents of younger children. CONCLUSIONS: Results are consistent with family life cycle development models of adjustment to childhood chronic illness. The clinical implications of the findings are also discussed.

Juvenile dermatomyositis: medical, social and economic status in adulthood.

Eighteen adults were studied an average of 18.5 years after the diagnosis of juvenile dermatomyositis had been made. Persistent weakness was found in six patients and recurrent rash in the classic distribution in seven. Other clinical features present were Raynaud's phenomenon, arthritis and subcutaneous nodules. Minor increases in the serum creatine phosphokinase level were noted in seven patients and did not correlate with the presence of weakness or rash. Educational achievement and employment status were better in this group than in a group of adults with juvenile rheumatoid arthritis or the general adult population of British Columbia. Significant residual disability related to calcinosis and flexion contractures was present in only three of the patients.