Evidence map›Paper›PMID 37491246›Full record

ArticlePediatric rheumatology online journal2023

"I'd like more options!": Interviews to explore young people and family decision-making needs for pain management in juvenile idiopathic arthritis.

Karine Toupin-April, Isabelle Gaboury, Laurie Proulx, Adam M Huber, Ciarán M Duffy, Esi M Morgan, Linda C Li, Elizabeth Stringer, Mark Connelly, Jennifer E Weiss and 20 more

Open access · goldAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Pediatric rheumatology online journal, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.

0numbers the graph read from it
0cells of the map it votes in
4citing papers in PubMed
2.9field-weighted citation impact, top 9% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

4 citing papers in PubMed, 5 citations in OpenAlex.

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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

30 authors at 20 institutions in 3 countries.

Karine Toupin-AprilSchool of Rehabilitation Sciences, Faculty of Health Sciences, University of Ottawa, Ottawa, ON, Canada. ktoupina@uottawa.ca.ORCID http://orcid.org/0000-0003-0141-7193
Isabelle GabouryDepartment of Family and Emergency Medicine, Faculty of Medicine and Health Sciences, Université de Sherbrooke, Longueuil, Québec, Canada.
Laurie ProulxCanadian Arthritis Patient Alliance, Ottawa, ON, Canada.
Adam M HuberDivision of Rheumatology, IWK Health Centre, Halifax, NS, Canada.
Ciarán M DuffyChildren's Hospital of Eastern Ontario Research Institute, Ottawa, ON, Canada.
Esi M MorganDivision of Rheumatology, Seattle Children's Hospital, Seattle, Washington, USA.
Linda C LiDepartment of Physical Therapy, Faculty of Medicine, University of British Columbia, Vancouver, BC, Canada.
Elizabeth StringerDivision of Rheumatology, IWK Health Centre, Halifax, NS, Canada.
Mark ConnellyDepartment of Pediatrics, Children's Mercy Kansas City, Kansas City, MO, USA.
Jennifer E WeissDivision of Rheumatology, Hackensack University Medical Center, Hackensack Meridian School of Medicine, Hackensack, NJ, USA.
Michele GibbonChildren's Hospital of Eastern Ontario Research Institute, Ottawa, ON, Canada.
Hannah SachsPublic Health Agency of Canada, Ottawa, ON, Canada.
Aditi SivakumarChildren's Hospital of Eastern Ontario Research Institute, Ottawa, ON, Canada.
Alexandra SiroisCanadian Arthritis Patient Alliance, ON, Sudbury, Canada.
Emily SirotichCanadian Arthritis Patient Alliance, New Haven, CT, USA.
Natasha TrehanUniversity of Ottawa, Ottawa, ON, Canada.
Naomi AbrahamsFaculty of Social Sciences, University of Ottawa, Ottawa, ON, Canada.
Janice S CohenChildren's Hospital of Eastern Ontario Research Institute, Ottawa, ON, Canada.
Sabrina CavalloSchool of Rehabilitation, Faculty of Medicine, Université de Montréal, Montréal, QC, Canada.
Tania El HindiStatistics Canada, Government of Canada, Ottawa, ON, Canada.
Marco RagusaThe Ottawa Hospital, University of Ottawa, Ottawa, ON, Canada.
France LégaréDepartment of Family and Emergency Medicine, Université Laval, Québec City, QC, Canada.
William B BrinkmanCincinnati Children's Hospital Medical Center, OH, Cincinnati, USA.
Paul R FortinUniversité Laval, QC, Canada.
Simon DécarySchool of Rehabilitation, Faculty of Medicine and Health Sciences, Université de Sherbrooke, Sherbrooke, QC, Canada.
Rebecca LeeCentre for Epidemiology Versus Arthritis, Centre for Musculoskeletal Research, Division of Musculoskeletal and Dermatological Sciences, Faculty of Biology, Medicine and Health, University of Manchester, Manchester Academic Health Science Centre, Manchester, UK.
Sabrina GmucaDivision of Rheumatology, Children's Hospital of Philadelphia, Philadelphia, PA, USA.
Gail PatersonArthritis Rehabilitation and Education Program, Arthritis Society Canada, Ottawa, ON, Canada.
Peter TugwellSchool of Epidemiology and Community Medicine, Department of Medicine, University of Ottawa, Ottawa, ON, Canada.
Jennifer N StinsonChild Health Evaluative Sciences, Research Institute, The Hospital for Sick Children, University of Toronto, Toronto, ON, Canada.
University of Ottawa · CACanadian Arthritis Patient Alliance · CADalhousie University · CAUniversité de Sherbrooke · CAArthritis Society · CACentre hospitalier universitaire de Québec · CACentre Hospitalier Universitaire Sainte-Justine · CACentres Intégré Universitaires de Santé et de Services Sociaux · CAChildren's Hospital of Eastern Ontario · CAChildren's Hospital of Philadelphia · USChildren's Mercy Hospital · USCincinnati Children's Hospital Medical Center · USHackensack University Medical Center · USManchester Academic Health Science Centre · GBPublic Health Agency of Canada · CAQueen's University · CASeattle Children's Hospital · USStatistics Canada · CAUniversity of British Columbia · CAUniversity of Toronto · CA

Funding

A Pilot Randomized Controlled Trial of Resilience Coaching for Adolescents with Chronic Musculoskeletal PainK23AR081409 · NIAMS · CHILDREN'S HOSP OF PHILADELPHIA · PI SABRINA ANDREA GMUCA · 2022 to 2026
$955k
NIAMS NIH HHS K23 AR081409
6 · The paper itself

Abstract

backgroundJuvenile idiopathic arthritis (JIA) is a common pediatric rheumatic condition and is associated with symptoms such as joint pain that can negatively impact health-related quality of life. To effectively manage pain in JIA, young people, their families, and health care providers (HCPs) should be supported to discuss pain management options and make a shared decision. However, pain is often under-recognized, and pain management discussions are not optimal. No studies have explored decision-making needs for pain management in JIA using a shared decision making (SDM) model. We sought to explore families' decision-making needs with respect to pain management among young people with JIA, parents/caregivers, and HCPs.

methodsWe conducted semi-structured virtual or face-to-face individual interviews with young people with JIA 8-18 years of age, parents/caregivers and HCPs using a qualitative descriptive study design. We recruited participants online across Canada and the United States, from a hospital and from a quality improvement network. We used interview guides based on the Ottawa Decision Support Framework to assess decision-making needs. We audiotaped, transcribed verbatim and analyzed interviews using thematic analysis.

resultsA total of 12 young people (n = 6 children and n = 6 adolescents), 13 parents/caregivers and 11 HCPs participated in interviews. Pediatric HCPs were comprised of rheumatologists (n = 4), physical therapists (n = 3), rheumatology nurses (n = 2) and occupational therapists (n = 2). The following themes were identified: (1) need to assess pain in an accurate manner; (2) need to address pain in pediatric rheumatology consultations; (3) need for information on pain management options, especially nonpharmacological approaches; (4) importance of effectiveness, safety and ease of use of treatments; (5) need to discuss young people/families' values and preferences for pain management options; and the (6) need for decision support. Themes were similar for young people, parents/caregivers and HCPs, although their respective importance varied.

conclusionsFindings suggest a need for evidence-based information and communication about pain management options, which would be addressed by decision support interventions and HCP training in pain and SDM. Work is underway to develop such interventions and implement them into practice to improve pain management in JIA and in turn lead to better health outcomes.

Indexed as

Arthritis, JuvenilePain ManagementAdolescentChildDecision Making, SharedHumansPainQualitative ResearchQuality of LifeDecision-making needsJuvenile idiopathic arthritisPain managementShared decision making

Identifiers

PMID37491246
PMCPMC10369758
OpenAlexW4385235001

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.