Barriers to Adherence in Juvenile Idiopathic Arthritis: A Multicenter Collaborative Experience and Preliminary Results

Favier, L.; Taylor, Janalee; Rich, Kristin Loiselle; Jones, Karla; Vora, Sheetal S.; Harris, Julia G.; Gottlieb, Beth S.; Robbins, Lisa L.; Lai, Jamie; Lee, Tzielan; Kohlheim, Melanie; Gill, Jennifer; Bouslaugh, Laura; Young, Angela M.; Griffin, Nancy; Morgan, Esi M.; Modi, Avani C.

doi:10.3899/jrheum.171087

Cited by 40 publications

(38 citation statements)

References 44 publications

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“…Since the advent of biologics, families of children with JIA have navigated more complex treatment regimens. Our prior work studying adherence barriers in JIA indicated that worry about JIA treatments was common for caregivers and patients [ 10 ], which suggests a need for more communication regarding specific concerns. Further, in a study assessing perceptions of adolescents prescribed biologic therapy, most adolescents preferred an active and involved role with dedicated education during their clinic visits [ 43 ].…”

Section: Discussionmentioning

confidence: 99%

“…Barriers to adherence were measured via a JIA-specific barriers assessment tool previously reported by our group, Barriers to Adherence Tool (BAT) [ 10 ]. This fourteen item checklist assesses logistical, social, psychological and knowledge-based adherence barriers in both patients and caregivers for all treatment modalities (medications, injections, infusions and physical/occupational therapy).…”

Section: Methodsmentioning

confidence: 99%

“…For example, prescription refills for adherence to disease modifying anti-rheumatic drugs (DMARD) and injectable anti-tumor necrosis-alpha drugs only occurred 46.9 and 65.7% of the time, respectively [ 9 ]. Our prior work studying adherence barriers in the current treatment landscape indicates that 70% of adolescents with JIA and 77% of their caregivers endorse at least one adherence barrier [ 10 ]. The most commonly reported barriers include worry about future consequences, pain, and forgetting, which are all amenable to intervention.…”

Section: Introductionmentioning

confidence: 99%

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Feasibility of a musculoskeletal ultrasound intervention to improve adherence in juvenile idiopathic arthritis: a proof-of concept trial

Favier¹,

Ting²,

Modi³

2018

Pediatr Rheumatol

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BackgroundNon-adherence is a prevalent and modifiable issue in juvenile idiopathic arthritis (JIA) that currently lacks provider-based intervention. Education surrounding disease status is one way in which families remain engaged in their care. Musculoskeletal ultrasound is one such form of demonstrative, real-time education that may impact the way patients and caregivers self-manage their disease. The aims of this study are to 1) assess the feasibility, acceptability and perceived usefulness of musculoskeletal ultrasound as a non-adherence intervention tool and 2) to examine changes in methotrexate adherence in adolescents with JIA following the ultrasound.MethodsEight adolescents with polyarticular or extended oligoarticular JIA and their caregivers completed this 12 week study. A within subject design was used to compare baseline and post-intervention adherence, quality of life and disease activity indices. Adherence measures included electronic measurement of methotrexate in addition to self-reported adherence questionnaires. The ultrasound intervention included a one-time, rheumatologist provided, educational examination of three or more currently or historically active joints.ResultsThe ultrasound intervention was found to be both feasible and acceptable. One hundred percent of eligible participants completed the ultrasound intervention. The ultrasound was well received by patients and caregivers, with most believing this to be a helpful tool. Baseline adherence was 75.3% among participants, with half of the participants being classified as non-adherent. Electronically measured and self-reported adherence measures did not show significant changes during the post-intervention period. Two participants improved, four participants maintained, and two participants decreased adherence. On ultrasound, 18/27 (66.7%) of the examined joints displayed abnormalities, with 63% being discrepant and additive to the rheumatologist’s physical examination.ConclusionsWhile our intervention did not show any changes in adherence, quality of life or disease activity indices in this proof-of-concept trial, the intervention does show promise in acceptability measures and merits future study in a more robust trial design. An additional study benefit was that the musculoskeletal ultrasound intervention was able to demonstrate subclinical disease, leading to clinically impactful therapeutic changes in several participants.

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Section: Discussionmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Feasibility of a musculoskeletal ultrasound intervention to improve adherence in juvenile idiopathic arthritis: a proof-of concept trial

Favier¹,

Ting²,

Modi³

2018

Pediatr Rheumatol

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“…Characteristics unique to cSLE make adherence particularly difficult, including number of medications, the complexity of medication regimens, medication-related organ damage, disease flares, and psychological manifestations [7,8]. For young adults with rheumatic diseases, adherence barriers include forgetfulness, polypharmacy, cost, personal problems, and/or refusal [9,10]. Specific to those with cSLE, medication-specific knowledge deficits and the lack of perceived improvement in daily symptoms are significant barriers to medication adherence [2,10,11].…”

Section: Introductionmentioning

confidence: 99%

Feasibility and acceptability of an innovative adherence intervention for young adults with childhood-onset systemic Lupus Erythematosus

et al. 2020

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Background: In Childhood-Onset Systemic Lupus Erythematosus (cSLE), poor medication adherence rates are very high. Interventions targeting this problem in cSLE are limited thus effective interventions are needed. The objective of this study is to examine the feasibility and acceptability an intervention (automated digital reminders + personalized prescribed treatment plan (pPTP)) to improve medication adherence in young adults with cSLE over 3 months. Method: This is a proof-of-concept randomized controlled study. All participants received SimpleMed+ pillboxes that track adherence. The treatment group received a pPTP, and in month 2, preselected digital reminders for missed doses. Reminders were discontinued after 30 days and adherence data collected. Data analysis was done using t-tests. Results: Twenty-one participants were approached and nineteen consented to participate, yielding a recruitment rate of 86%. Participants were on average 20.5 years, mostly black (58%) and female (84%). Of the nineteen consented, eleven were randomized to control (57%) and eight to treatment (42%) groups respectively. All participants in the treatment group rated the pillbox as easy to use, notably; none reported boredom with the pillbox or reminders. Also, 88% of participants in the treatment group rated the pillbox as helpful, however, only 50% reported the pPTP taught them new information about lupus or made them more interested in their lupus management. Conclusions: This is the first use of an electronic pillbox to track adherence to multiple medications in cSLE. The high rating of the pillbox makes it an acceptable method of measuring adherence. Feasibility and acceptability ratings for the intervention were mixed suggesting a there is a subset of cSLE patients for whom this intervention would be beneficial. Future research should focus on a larger trial.

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“…Dada esta situación, existe literatura acerca de las barreras percibidas por padres y pacientes con AIJ para adherir a las diferentes intervenciones terapéuticas, las cuales dificultan el logro de efectos positivos a largo plazo 30,31 . Favier et al, identificó que el olvido de la terapia, la sensación de dolor y la creencia de que la terapia no es necesaria, son las principales barreras a la adherencia y que tanto el uso de mediciones de estas barreras, como realizar acciones que faciliten la adherencia, son vitales para el logro de una mejor calidad de vida en estos pacientes 31 .…”

Section: Discussionunclassified

Efectividad de la terapia Watsu en pacientes con artritis idiopática juvenil. Un ensayo clínico controlado paralelo, aleatorio y simple ciego

2019

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La artritis idiopática juvenil (AIJ), es una enfermedad reumatológica en menores de 16 años, que produce discapacidad física temprana. Se propone el uso de hidroterapia Watsu en estos pacientes.Objetivo: Evaluar la efectividad del Watsu en comparación a hidroterapia convencional en la calidad de vida relacionada con la salud (CVRS), estado de salud funcional, dolor y rangos articulares de movimiento en pacientes con AIJ aguda o subaguda.Pacientes y Método: Ensayo clínico controlado paralelo, con asignación 1:1, aleatorio y simple ciego, en 46 pacientes con AIJ en fase aguda y subaguda entre 8-18 años de edad. Se utilizaron las evaluaciones Pediatric Quality of Life Inventory 4.0 (PedsQL4.0), Childhood Health Assessment Questionnaire (CHAQ) y 10 joints-Global range of motion score (GROMS) al inicio, posterior al tratamiento y a los 3 meses de seguimiento. Los pacientes se asignaron aleatoriamente al grupo Watsu (n = 24) y al grupo hidroterapia convencional (n = 22), participando de 10 sesiones de 45 minutos, con frecuencia de una vez por semana.La terapia Watsu presentó mejoras estadísticamente significativas en funcionamiento físico-CVRS (p = 0,041), índice de discapacidad (p = 0,015), índice de malestar (p = 0,015) y estado de salud funcional-CHAQ (p = 0,013) posterior al tratamiento en comparación a la hidroterapia convencional.Conclusiones: La terapia Watsu mejoró la CVRS, sensación de dolor y estado de salud funcional en comparación a la hidroterapia convencional. Se requiere de adaptaciones metodológicas en futuros estudios para mejorar la validez externa de estos resultados.

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Barriers to Adherence in Juvenile Idiopathic Arthritis: A Multicenter Collaborative Experience and Preliminary Results

Cited by 40 publications

References 44 publications

Feasibility of a musculoskeletal ultrasound intervention to improve adherence in juvenile idiopathic arthritis: a proof-of concept trial

Feasibility of a musculoskeletal ultrasound intervention to improve adherence in juvenile idiopathic arthritis: a proof-of concept trial

Feasibility and acceptability of an innovative adherence intervention for young adults with childhood-onset systemic Lupus Erythematosus

Efectividad de la terapia Watsu en pacientes con artritis idiopática juvenil. Un ensayo clínico controlado paralelo, aleatorio y simple ciego

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