Making Decisions About Stopping Medicines for Well‐Controlled Juvenile Idiopathic Arthritis: A Mixed‐Methods Study of Patients and Caregivers
Objective Improved treatments for juvenile idiopathic arthritis (JIA) have increased remission rates. We conducted this study to investigate how patients and caregivers make decisions about stopping medications when JIA is inactive. Methods We performed a mixed‐methods study of caregivers and patien...
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| Veröffentlicht in: | Arthritis care & research (2010) 2021-03, Vol.73 (3), p.374-385 |
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| creator | Horton, Daniel B. Salas, Jomaira Wec, Aleksandra Kohlheim, Melanie Kapadia, Pooja Beukelman, Timothy Boneparth, Alexis Haverkamp, Ky Mannion, Melissa L. Moorthy, L. Nandini Ringold, Sarah Rosenthal, Marsha |
| description | Objective
Improved treatments for juvenile idiopathic arthritis (JIA) have increased remission rates. We conducted this study to investigate how patients and caregivers make decisions about stopping medications when JIA is inactive.
Methods
We performed a mixed‐methods study of caregivers and patients affected by JIA, recruited through social media and flyers, and selected by purposive sampling. Participants discussed their experiences with JIA, medications, and decision‐making through recorded telephone interviews. Of 44 interviewees, 20 were patients (50% ages |
| doi_str_mv | 10.1002/acr.24129 |
| format | Article |
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Improved treatments for juvenile idiopathic arthritis (JIA) have increased remission rates. We conducted this study to investigate how patients and caregivers make decisions about stopping medications when JIA is inactive.
Methods
We performed a mixed‐methods study of caregivers and patients affected by JIA, recruited through social media and flyers, and selected by purposive sampling. Participants discussed their experiences with JIA, medications, and decision‐making through recorded telephone interviews. Of 44 interviewees, 20 were patients (50% ages <18 years), and 24 were caregivers (50% caring for children ages ≤10 years). We evaluated characteristics associated with high levels of reported concerns about JIA or medicines using Fisher’s exact testing.
Results
Decisions about stopping medicines were informed by competing risks between disease activity and treatment. Participants who expressed more concerns about JIA were more likely to report disease‐related complications (P = 0.002) and more motivated to continue treatment. However, participants expressing more concern about medicines were more likely to report treatment‐related complications (P = 0.04) and felt more compelled to stop treatment. Additionally, participants considered how JIA or treatments facilitated or interfered with their sense of normalcy and safety, expressed feelings of guilt and regret about previous or potential adverse events, and reflected on uncertainty and unpredictability of future harms. Decision‐making was also informed by trust in rheumatologists and other information sources (e.g., family and online support groups).
Conclusion
When deciding whether to stop medicines whenever JIA is inactive, patients and caregivers weigh competing risks between disease activity and treatment. Based on our results, we suggest specific approaches for clinicians to perform shared decision‐making regarding stopping medicines for JIA.</description><identifier>ISSN: 2151-464X</identifier><identifier>ISSN: 2151-4658</identifier><identifier>EISSN: 2151-4658</identifier><identifier>DOI: 10.1002/acr.24129</identifier><identifier>PMID: 31880862</identifier><language>eng</language><publisher>United States: Wiley Subscription Services, Inc</publisher><subject>Adolescent ; Adult ; Adverse events ; Antirheumatic Agents - administration & dosage ; Antirheumatic Agents - adverse effects ; Arthritis ; Arthritis, Juvenile - diagnosis ; Arthritis, Juvenile - drug therapy ; Arthritis, Juvenile - psychology ; Caregivers ; Caregivers - psychology ; Choice Behavior ; Decision making ; Decision Making, Shared ; Drug Administration Schedule ; Emotions ; Female ; Health Knowledge, Attitudes, Practice ; Humans ; Male ; Mixed methods research ; Mothers - psychology ; Patient Participation ; Patients - psychology ; Physician-Patient Relations ; Remission ; Remission Induction ; Treatment Outcome ; Young Adult</subject><ispartof>Arthritis care & research (2010), 2021-03, Vol.73 (3), p.374-385</ispartof><rights>2019, American College of Rheumatology</rights><rights>2019, American College of Rheumatology.</rights><rights>2021 American College of Rheumatology</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c4439-ad939e0374217649162951c2adaa34ebd1407ad89647d200601d7ab568bf93c63</citedby><cites>FETCH-LOGICAL-c4439-ad939e0374217649162951c2adaa34ebd1407ad89647d200601d7ab568bf93c63</cites><orcidid>0000-0002-1831-1339 ; 0000-0002-2216-970X ; 0000-0001-9410-2099 ; 0000-0001-6382-3678</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://onlinelibrary.wiley.com/doi/pdf/10.1002%2Facr.24129$$EPDF$$P50$$Gwiley$$H</linktopdf><linktohtml>$$Uhttps://onlinelibrary.wiley.com/doi/full/10.1002%2Facr.24129$$EHTML$$P50$$Gwiley$$H</linktohtml><link.rule.ids>230,314,776,780,881,1411,27901,27902,45550,45551</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/31880862$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Horton, Daniel B.</creatorcontrib><creatorcontrib>Salas, Jomaira</creatorcontrib><creatorcontrib>Wec, Aleksandra</creatorcontrib><creatorcontrib>Kohlheim, Melanie</creatorcontrib><creatorcontrib>Kapadia, Pooja</creatorcontrib><creatorcontrib>Beukelman, Timothy</creatorcontrib><creatorcontrib>Boneparth, Alexis</creatorcontrib><creatorcontrib>Haverkamp, Ky</creatorcontrib><creatorcontrib>Mannion, Melissa L.</creatorcontrib><creatorcontrib>Moorthy, L. Nandini</creatorcontrib><creatorcontrib>Ringold, Sarah</creatorcontrib><creatorcontrib>Rosenthal, Marsha</creatorcontrib><title>Making Decisions About Stopping Medicines for Well‐Controlled Juvenile Idiopathic Arthritis: A Mixed‐Methods Study of Patients and Caregivers</title><title>Arthritis care & research (2010)</title><addtitle>Arthritis Care Res (Hoboken)</addtitle><description>Objective
Improved treatments for juvenile idiopathic arthritis (JIA) have increased remission rates. We conducted this study to investigate how patients and caregivers make decisions about stopping medications when JIA is inactive.
Methods
We performed a mixed‐methods study of caregivers and patients affected by JIA, recruited through social media and flyers, and selected by purposive sampling. Participants discussed their experiences with JIA, medications, and decision‐making through recorded telephone interviews. Of 44 interviewees, 20 were patients (50% ages <18 years), and 24 were caregivers (50% caring for children ages ≤10 years). We evaluated characteristics associated with high levels of reported concerns about JIA or medicines using Fisher’s exact testing.
Results
Decisions about stopping medicines were informed by competing risks between disease activity and treatment. Participants who expressed more concerns about JIA were more likely to report disease‐related complications (P = 0.002) and more motivated to continue treatment. However, participants expressing more concern about medicines were more likely to report treatment‐related complications (P = 0.04) and felt more compelled to stop treatment. Additionally, participants considered how JIA or treatments facilitated or interfered with their sense of normalcy and safety, expressed feelings of guilt and regret about previous or potential adverse events, and reflected on uncertainty and unpredictability of future harms. Decision‐making was also informed by trust in rheumatologists and other information sources (e.g., family and online support groups).
Conclusion
When deciding whether to stop medicines whenever JIA is inactive, patients and caregivers weigh competing risks between disease activity and treatment. Based on our results, we suggest specific approaches for clinicians to perform shared decision‐making regarding stopping medicines for JIA.</description><subject>Adolescent</subject><subject>Adult</subject><subject>Adverse events</subject><subject>Antirheumatic Agents - administration & dosage</subject><subject>Antirheumatic Agents - adverse effects</subject><subject>Arthritis</subject><subject>Arthritis, Juvenile - diagnosis</subject><subject>Arthritis, Juvenile - drug therapy</subject><subject>Arthritis, Juvenile - psychology</subject><subject>Caregivers</subject><subject>Caregivers - psychology</subject><subject>Choice Behavior</subject><subject>Decision making</subject><subject>Decision Making, Shared</subject><subject>Drug Administration Schedule</subject><subject>Emotions</subject><subject>Female</subject><subject>Health Knowledge, Attitudes, Practice</subject><subject>Humans</subject><subject>Male</subject><subject>Mixed methods research</subject><subject>Mothers - psychology</subject><subject>Patient Participation</subject><subject>Patients - psychology</subject><subject>Physician-Patient Relations</subject><subject>Remission</subject><subject>Remission Induction</subject><subject>Treatment Outcome</subject><subject>Young Adult</subject><issn>2151-464X</issn><issn>2151-4658</issn><issn>2151-4658</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2021</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><recordid>eNp1kctuEzEUhkcIRKvSBS-ALLGhi7S-zcUskKLhVtQIxEWwszz2mcRlYg-2J5AdjwCvyJPgkhIBEt7Y0vn86bf_orhL8CnBmJ4pHU4pJ1TcKA4pKcmMV2Vzc3_mHw6K4xgvcV6MNg0Tt4sDRpoGNxU9LL4v1EfrlugxaButdxHNOz8l9Cb5cbwaLMBYbR1E1PuA3sMw_Pj6rfUuBT8MYNCLaQPODoDOjfWjSiur0TykVbDJxodojhb2C5h8ZwFp5U3M5slske_RK5UsuBSRcga1KsDSbiDEO8WtXg0Rjq_3o-Ld0ydv2-ezi5fPztv5xUxzzsRMGcEEYFZzSuqKC1JRURJNlVGKcegM4bhWphEVrw3FuMLE1Korq6brBdMVOyoe7bzj1K3B6BwlqEGOwa5V2EqvrPx74uxKLv1G1oyIRogseHAtCP7TBDHJtY06f5By4KcoKWOEljlXmdH7_6CXfgouP09SLqioM4czdbKjdPAxBuj3YQiWV13L3LX81XVm7_2Zfk_-bjYDZzvgcy5n-3-TnLevd8qfAMm2YA</recordid><startdate>202103</startdate><enddate>202103</enddate><creator>Horton, Daniel B.</creator><creator>Salas, Jomaira</creator><creator>Wec, Aleksandra</creator><creator>Kohlheim, Melanie</creator><creator>Kapadia, Pooja</creator><creator>Beukelman, Timothy</creator><creator>Boneparth, Alexis</creator><creator>Haverkamp, Ky</creator><creator>Mannion, Melissa L.</creator><creator>Moorthy, L. Nandini</creator><creator>Ringold, Sarah</creator><creator>Rosenthal, Marsha</creator><general>Wiley Subscription Services, Inc</general><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>7QP</scope><scope>NAPCQ</scope><scope>7X8</scope><scope>5PM</scope><orcidid>https://orcid.org/0000-0002-1831-1339</orcidid><orcidid>https://orcid.org/0000-0002-2216-970X</orcidid><orcidid>https://orcid.org/0000-0001-9410-2099</orcidid><orcidid>https://orcid.org/0000-0001-6382-3678</orcidid></search><sort><creationdate>202103</creationdate><title>Making Decisions About Stopping Medicines for Well‐Controlled Juvenile Idiopathic Arthritis: A Mixed‐Methods Study of Patients and Caregivers</title><author>Horton, Daniel B. ; Salas, Jomaira ; Wec, Aleksandra ; Kohlheim, Melanie ; Kapadia, Pooja ; Beukelman, Timothy ; Boneparth, Alexis ; Haverkamp, Ky ; Mannion, Melissa L. ; Moorthy, L. Nandini ; Ringold, Sarah ; Rosenthal, Marsha</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c4439-ad939e0374217649162951c2adaa34ebd1407ad89647d200601d7ab568bf93c63</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2021</creationdate><topic>Adolescent</topic><topic>Adult</topic><topic>Adverse events</topic><topic>Antirheumatic Agents - administration & dosage</topic><topic>Antirheumatic Agents - adverse effects</topic><topic>Arthritis</topic><topic>Arthritis, Juvenile - diagnosis</topic><topic>Arthritis, Juvenile - drug therapy</topic><topic>Arthritis, Juvenile - psychology</topic><topic>Caregivers</topic><topic>Caregivers - psychology</topic><topic>Choice Behavior</topic><topic>Decision making</topic><topic>Decision Making, Shared</topic><topic>Drug Administration Schedule</topic><topic>Emotions</topic><topic>Female</topic><topic>Health Knowledge, Attitudes, Practice</topic><topic>Humans</topic><topic>Male</topic><topic>Mixed methods research</topic><topic>Mothers - psychology</topic><topic>Patient Participation</topic><topic>Patients - psychology</topic><topic>Physician-Patient Relations</topic><topic>Remission</topic><topic>Remission Induction</topic><topic>Treatment Outcome</topic><topic>Young Adult</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Horton, Daniel B.</creatorcontrib><creatorcontrib>Salas, Jomaira</creatorcontrib><creatorcontrib>Wec, Aleksandra</creatorcontrib><creatorcontrib>Kohlheim, Melanie</creatorcontrib><creatorcontrib>Kapadia, Pooja</creatorcontrib><creatorcontrib>Beukelman, Timothy</creatorcontrib><creatorcontrib>Boneparth, Alexis</creatorcontrib><creatorcontrib>Haverkamp, Ky</creatorcontrib><creatorcontrib>Mannion, Melissa L.</creatorcontrib><creatorcontrib>Moorthy, L. Nandini</creatorcontrib><creatorcontrib>Ringold, Sarah</creatorcontrib><creatorcontrib>Rosenthal, Marsha</creatorcontrib><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>Calcium & Calcified Tissue Abstracts</collection><collection>Nursing & Allied Health Premium</collection><collection>MEDLINE - Academic</collection><collection>PubMed Central (Full Participant titles)</collection><jtitle>Arthritis care & research (2010)</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Horton, Daniel B.</au><au>Salas, Jomaira</au><au>Wec, Aleksandra</au><au>Kohlheim, Melanie</au><au>Kapadia, Pooja</au><au>Beukelman, Timothy</au><au>Boneparth, Alexis</au><au>Haverkamp, Ky</au><au>Mannion, Melissa L.</au><au>Moorthy, L. Nandini</au><au>Ringold, Sarah</au><au>Rosenthal, Marsha</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Making Decisions About Stopping Medicines for Well‐Controlled Juvenile Idiopathic Arthritis: A Mixed‐Methods Study of Patients and Caregivers</atitle><jtitle>Arthritis care & research (2010)</jtitle><addtitle>Arthritis Care Res (Hoboken)</addtitle><date>2021-03</date><risdate>2021</risdate><volume>73</volume><issue>3</issue><spage>374</spage><epage>385</epage><pages>374-385</pages><issn>2151-464X</issn><issn>2151-4658</issn><eissn>2151-4658</eissn><abstract>Objective
Improved treatments for juvenile idiopathic arthritis (JIA) have increased remission rates. We conducted this study to investigate how patients and caregivers make decisions about stopping medications when JIA is inactive.
Methods
We performed a mixed‐methods study of caregivers and patients affected by JIA, recruited through social media and flyers, and selected by purposive sampling. Participants discussed their experiences with JIA, medications, and decision‐making through recorded telephone interviews. Of 44 interviewees, 20 were patients (50% ages <18 years), and 24 were caregivers (50% caring for children ages ≤10 years). We evaluated characteristics associated with high levels of reported concerns about JIA or medicines using Fisher’s exact testing.
Results
Decisions about stopping medicines were informed by competing risks between disease activity and treatment. Participants who expressed more concerns about JIA were more likely to report disease‐related complications (P = 0.002) and more motivated to continue treatment. However, participants expressing more concern about medicines were more likely to report treatment‐related complications (P = 0.04) and felt more compelled to stop treatment. Additionally, participants considered how JIA or treatments facilitated or interfered with their sense of normalcy and safety, expressed feelings of guilt and regret about previous or potential adverse events, and reflected on uncertainty and unpredictability of future harms. Decision‐making was also informed by trust in rheumatologists and other information sources (e.g., family and online support groups).
Conclusion
When deciding whether to stop medicines whenever JIA is inactive, patients and caregivers weigh competing risks between disease activity and treatment. Based on our results, we suggest specific approaches for clinicians to perform shared decision‐making regarding stopping medicines for JIA.</abstract><cop>United States</cop><pub>Wiley Subscription Services, Inc</pub><pmid>31880862</pmid><doi>10.1002/acr.24129</doi><tpages>12</tpages><orcidid>https://orcid.org/0000-0002-1831-1339</orcidid><orcidid>https://orcid.org/0000-0002-2216-970X</orcidid><orcidid>https://orcid.org/0000-0001-9410-2099</orcidid><orcidid>https://orcid.org/0000-0001-6382-3678</orcidid><oa>free_for_read</oa></addata></record> |
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| subjects | Adolescent Adult Adverse events Antirheumatic Agents - administration & dosage Antirheumatic Agents - adverse effects Arthritis Arthritis, Juvenile - diagnosis Arthritis, Juvenile - drug therapy Arthritis, Juvenile - psychology Caregivers Caregivers - psychology Choice Behavior Decision making Decision Making, Shared Drug Administration Schedule Emotions Female Health Knowledge, Attitudes, Practice Humans Male Mixed methods research Mothers - psychology Patient Participation Patients - psychology Physician-Patient Relations Remission Remission Induction Treatment Outcome Young Adult |
| title | Making Decisions About Stopping Medicines for Well‐Controlled Juvenile Idiopathic Arthritis: A Mixed‐Methods Study of Patients and Caregivers |
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