Pigmented villonodular synovitis: a crowdsourcing study of two hundred and seventy two patients
Purpose We aimed to ascertain the feasibility of crowdsourcing via Facebook for medical research purposes; by investigating surgical, oncological and functional outcome and quality-of-life (QOL) in patients with pigmented villonodular synovitis (PVNS) enrolled in a Facebook community (1112 members)....
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| Veröffentlicht in: | International orthopaedics 2016-12, Vol.40 (12), p.2459-2468 |
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| creator | van der Heijden, Lizz Piner, Sheila R. van de Sande, Michiel Adrianus Josephus |
| description | Purpose
We aimed to ascertain the feasibility of crowdsourcing via Facebook for medical research purposes; by investigating surgical, oncological and functional outcome and quality-of-life (QOL) in patients with pigmented villonodular synovitis (PVNS) enrolled in a Facebook community (1112 members).
Methods
Patients completed online open surveys on demographics, surgery and clinical outcomes (group 1); and patient-reported outcome measures (PROMs) including knee-injury osteoarthritis outcome score (KOOS), hip-disability osteoarthritis outcome score (HOOS), Toronto extremity salvage score (TESS) and SF-36 (group 2). Mean follow-up was 70 months (12–374). Consistency checks were performed with Cohen’s kappa statistic for intra-rater agreement.
Results
The first survey was completed by 272 patients (group 1) and 72 patients completed the second (group 2). In group 1, recurrence-rate was 58 % (69/118) after arthroscopic, 36 % (35/97) after open and 50 % (5/10) after combined synovectomy (
p
= 0.003). In group 2, recurrence-rate was 67 % (26/39) after arthroscopic and 51 % (17/33) after open synovectomy (
p
= 0.19). Recurrence-risk was increased for diffuse disease (OR = 16; 95%CI = 3.2–85;
p
|
| doi_str_mv | 10.1007/s00264-016-3208-1 |
| format | Article |
| fullrecord | <record><control><sourceid>proquest_cross</sourceid><recordid>TN_cdi_proquest_miscellaneous_1868307527</recordid><sourceformat>XML</sourceformat><sourcesystem>PC</sourcesystem><sourcerecordid>1868307527</sourcerecordid><originalsourceid>FETCH-LOGICAL-c420t-d7bd999d0e115af609b60cf6e541d1906e444370483d26843c412e35bb92d0fe3</originalsourceid><addsrcrecordid>eNqNkUtPwzAQhC0EouXxA7ggH7kEdm3HibkhxEtCggOcrSR2SqrULnbSqv8eQ4Ej4rTa3W_mMEPICcI5AhQXEYBJkQHKjDMoM9whUxScZTmqfJdMgQvMmFT5hBzEOAfAQpa4TyaswHTlOCX6uZstrBusoauu773zZuyrQOPG-VU3dPGSVrQJfm2iH0PTuRmNw2g21Ld0WHv6NjoTkrhyhka7Sk6br_uyGrq0xCOy11Z9tMff85C83t68XN9nj093D9dXj1kjGAyZKWqjlDJgEfOqlaBqCU0rbS7QoAJphRC8AFFyw2QpeCOQWZ7XtWIGWssPydnWdxn8-2jjoBddbGzfV876MWosZcmhyFnxD5RJWShkkFDcoimBGINt9TJ0iypsNIL-rEBvK9CpAv1ZgcakOf22H-uFNb-Kn8wTwLZATC83s0HPU7QupfOH6wejCJGs</addsrcrecordid><sourcetype>Aggregation Database</sourcetype><iscdi>true</iscdi><recordtype>article</recordtype><pqid>1826679120</pqid></control><display><type>article</type><title>Pigmented villonodular synovitis: a crowdsourcing study of two hundred and seventy two patients</title><source>MEDLINE</source><source>Springer Nature - Complete Springer Journals</source><source>Elektronische Zeitschriftenbibliothek - Frei zugängliche E-Journals</source><creator>van der Heijden, Lizz ; Piner, Sheila R. ; van de Sande, Michiel Adrianus Josephus</creator><creatorcontrib>van der Heijden, Lizz ; Piner, Sheila R. ; van de Sande, Michiel Adrianus Josephus</creatorcontrib><description>Purpose
We aimed to ascertain the feasibility of crowdsourcing via Facebook for medical research purposes; by investigating surgical, oncological and functional outcome and quality-of-life (QOL) in patients with pigmented villonodular synovitis (PVNS) enrolled in a Facebook community (1112 members).
Methods
Patients completed online open surveys on demographics, surgery and clinical outcomes (group 1); and patient-reported outcome measures (PROMs) including knee-injury osteoarthritis outcome score (KOOS), hip-disability osteoarthritis outcome score (HOOS), Toronto extremity salvage score (TESS) and SF-36 (group 2). Mean follow-up was 70 months (12–374). Consistency checks were performed with Cohen’s kappa statistic for intra-rater agreement.
Results
The first survey was completed by 272 patients (group 1) and 72 patients completed the second (group 2). In group 1, recurrence-rate was 58 % (69/118) after arthroscopic, 36 % (35/97) after open and 50 % (5/10) after combined synovectomy (
p
= 0.003). In group 2, recurrence-rate was 67 % (26/39) after arthroscopic and 51 % (17/33) after open synovectomy (
p
= 0.19). Recurrence-risk was increased for diffuse disease (OR = 16; 95%CI = 3.2–85;
p
< 0.001). Mean function and QOL did not differ after arthroscopic or open synovectomy: KOOS 49
vs.
58 (
p
= 0.24), HOOS 62
vs.
53 (
p
= 0.56), TESS 78
vs.
82 (
p
= 0.86), SF-36 61
vs.
66 (
p
= 0.41). Cohen’s kappa statistic for intra-rater agreement was good to outstanding (κ = 0.68–0.95;
p
< 0.001).
Conclusion
Local recurrence-risk was higher for diffuse-type disease and arthroscopic synovectomy. Functional outcome and QOL were comparable for both types of surgery. Gathering data via crowdsourcing seems a promising and innovative way of evaluating rare diseases including PVNS.</description><identifier>ISSN: 0341-2695</identifier><identifier>EISSN: 1432-5195</identifier><identifier>DOI: 10.1007/s00264-016-3208-1</identifier><identifier>PMID: 27169531</identifier><language>eng</language><publisher>Berlin/Heidelberg: Springer Berlin Heidelberg</publisher><subject>Adolescent ; Adult ; Aged ; Arthroscopy ; Child ; Crowdsourcing ; Feasibility Studies ; Female ; Health Surveys ; Humans ; Male ; Medicine ; Medicine & Public Health ; Middle Aged ; Neoplasm Recurrence, Local - surgery ; Original Paper ; Orthopedics ; Osteoarthritis - surgery ; Quality of Life ; Recovery of Function ; Social Media ; Synovectomy - methods ; Synovitis, Pigmented Villonodular - diagnosis ; Synovitis, Pigmented Villonodular - diagnostic imaging ; Synovitis, Pigmented Villonodular - surgery ; Young Adult</subject><ispartof>International orthopaedics, 2016-12, Vol.40 (12), p.2459-2468</ispartof><rights>The Author(s) 2016</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c420t-d7bd999d0e115af609b60cf6e541d1906e444370483d26843c412e35bb92d0fe3</citedby><cites>FETCH-LOGICAL-c420t-d7bd999d0e115af609b60cf6e541d1906e444370483d26843c412e35bb92d0fe3</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://link.springer.com/content/pdf/10.1007/s00264-016-3208-1$$EPDF$$P50$$Gspringer$$Hfree_for_read</linktopdf><linktohtml>$$Uhttps://link.springer.com/10.1007/s00264-016-3208-1$$EHTML$$P50$$Gspringer$$Hfree_for_read</linktohtml><link.rule.ids>314,776,780,27901,27902,41464,42533,51294</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/27169531$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>van der Heijden, Lizz</creatorcontrib><creatorcontrib>Piner, Sheila R.</creatorcontrib><creatorcontrib>van de Sande, Michiel Adrianus Josephus</creatorcontrib><title>Pigmented villonodular synovitis: a crowdsourcing study of two hundred and seventy two patients</title><title>International orthopaedics</title><addtitle>International Orthopaedics (SICOT)</addtitle><addtitle>Int Orthop</addtitle><description>Purpose
We aimed to ascertain the feasibility of crowdsourcing via Facebook for medical research purposes; by investigating surgical, oncological and functional outcome and quality-of-life (QOL) in patients with pigmented villonodular synovitis (PVNS) enrolled in a Facebook community (1112 members).
Methods
Patients completed online open surveys on demographics, surgery and clinical outcomes (group 1); and patient-reported outcome measures (PROMs) including knee-injury osteoarthritis outcome score (KOOS), hip-disability osteoarthritis outcome score (HOOS), Toronto extremity salvage score (TESS) and SF-36 (group 2). Mean follow-up was 70 months (12–374). Consistency checks were performed with Cohen’s kappa statistic for intra-rater agreement.
Results
The first survey was completed by 272 patients (group 1) and 72 patients completed the second (group 2). In group 1, recurrence-rate was 58 % (69/118) after arthroscopic, 36 % (35/97) after open and 50 % (5/10) after combined synovectomy (
p
= 0.003). In group 2, recurrence-rate was 67 % (26/39) after arthroscopic and 51 % (17/33) after open synovectomy (
p
= 0.19). Recurrence-risk was increased for diffuse disease (OR = 16; 95%CI = 3.2–85;
p
< 0.001). Mean function and QOL did not differ after arthroscopic or open synovectomy: KOOS 49
vs.
58 (
p
= 0.24), HOOS 62
vs.
53 (
p
= 0.56), TESS 78
vs.
82 (
p
= 0.86), SF-36 61
vs.
66 (
p
= 0.41). Cohen’s kappa statistic for intra-rater agreement was good to outstanding (κ = 0.68–0.95;
p
< 0.001).
Conclusion
Local recurrence-risk was higher for diffuse-type disease and arthroscopic synovectomy. Functional outcome and QOL were comparable for both types of surgery. Gathering data via crowdsourcing seems a promising and innovative way of evaluating rare diseases including PVNS.</description><subject>Adolescent</subject><subject>Adult</subject><subject>Aged</subject><subject>Arthroscopy</subject><subject>Child</subject><subject>Crowdsourcing</subject><subject>Feasibility Studies</subject><subject>Female</subject><subject>Health Surveys</subject><subject>Humans</subject><subject>Male</subject><subject>Medicine</subject><subject>Medicine & Public Health</subject><subject>Middle Aged</subject><subject>Neoplasm Recurrence, Local - surgery</subject><subject>Original Paper</subject><subject>Orthopedics</subject><subject>Osteoarthritis - surgery</subject><subject>Quality of Life</subject><subject>Recovery of Function</subject><subject>Social Media</subject><subject>Synovectomy - methods</subject><subject>Synovitis, Pigmented Villonodular - diagnosis</subject><subject>Synovitis, Pigmented Villonodular - diagnostic imaging</subject><subject>Synovitis, Pigmented Villonodular - surgery</subject><subject>Young Adult</subject><issn>0341-2695</issn><issn>1432-5195</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2016</creationdate><recordtype>article</recordtype><sourceid>C6C</sourceid><sourceid>EIF</sourceid><recordid>eNqNkUtPwzAQhC0EouXxA7ggH7kEdm3HibkhxEtCggOcrSR2SqrULnbSqv8eQ4Ej4rTa3W_mMEPICcI5AhQXEYBJkQHKjDMoM9whUxScZTmqfJdMgQvMmFT5hBzEOAfAQpa4TyaswHTlOCX6uZstrBusoauu773zZuyrQOPG-VU3dPGSVrQJfm2iH0PTuRmNw2g21Ld0WHv6NjoTkrhyhka7Sk6br_uyGrq0xCOy11Z9tMff85C83t68XN9nj093D9dXj1kjGAyZKWqjlDJgEfOqlaBqCU0rbS7QoAJphRC8AFFyw2QpeCOQWZ7XtWIGWssPydnWdxn8-2jjoBddbGzfV876MWosZcmhyFnxD5RJWShkkFDcoimBGINt9TJ0iypsNIL-rEBvK9CpAv1ZgcakOf22H-uFNb-Kn8wTwLZATC83s0HPU7QupfOH6wejCJGs</recordid><startdate>20161201</startdate><enddate>20161201</enddate><creator>van der Heijden, Lizz</creator><creator>Piner, Sheila R.</creator><creator>van de Sande, Michiel Adrianus Josephus</creator><general>Springer Berlin Heidelberg</general><scope>C6C</scope><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>7X8</scope><scope>7QP</scope></search><sort><creationdate>20161201</creationdate><title>Pigmented villonodular synovitis: a crowdsourcing study of two hundred and seventy two patients</title><author>van der Heijden, Lizz ; Piner, Sheila R. ; van de Sande, Michiel Adrianus Josephus</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c420t-d7bd999d0e115af609b60cf6e541d1906e444370483d26843c412e35bb92d0fe3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2016</creationdate><topic>Adolescent</topic><topic>Adult</topic><topic>Aged</topic><topic>Arthroscopy</topic><topic>Child</topic><topic>Crowdsourcing</topic><topic>Feasibility Studies</topic><topic>Female</topic><topic>Health Surveys</topic><topic>Humans</topic><topic>Male</topic><topic>Medicine</topic><topic>Medicine & Public Health</topic><topic>Middle Aged</topic><topic>Neoplasm Recurrence, Local - surgery</topic><topic>Original Paper</topic><topic>Orthopedics</topic><topic>Osteoarthritis - surgery</topic><topic>Quality of Life</topic><topic>Recovery of Function</topic><topic>Social Media</topic><topic>Synovectomy - methods</topic><topic>Synovitis, Pigmented Villonodular - diagnosis</topic><topic>Synovitis, Pigmented Villonodular - diagnostic imaging</topic><topic>Synovitis, Pigmented Villonodular - surgery</topic><topic>Young Adult</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>van der Heijden, Lizz</creatorcontrib><creatorcontrib>Piner, Sheila R.</creatorcontrib><creatorcontrib>van de Sande, Michiel Adrianus Josephus</creatorcontrib><collection>Springer Nature OA/Free Journals</collection><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>MEDLINE - Academic</collection><collection>Calcium & Calcified Tissue Abstracts</collection><jtitle>International orthopaedics</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>van der Heijden, Lizz</au><au>Piner, Sheila R.</au><au>van de Sande, Michiel Adrianus Josephus</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Pigmented villonodular synovitis: a crowdsourcing study of two hundred and seventy two patients</atitle><jtitle>International orthopaedics</jtitle><stitle>International Orthopaedics (SICOT)</stitle><addtitle>Int Orthop</addtitle><date>2016-12-01</date><risdate>2016</risdate><volume>40</volume><issue>12</issue><spage>2459</spage><epage>2468</epage><pages>2459-2468</pages><issn>0341-2695</issn><eissn>1432-5195</eissn><abstract>Purpose
We aimed to ascertain the feasibility of crowdsourcing via Facebook for medical research purposes; by investigating surgical, oncological and functional outcome and quality-of-life (QOL) in patients with pigmented villonodular synovitis (PVNS) enrolled in a Facebook community (1112 members).
Methods
Patients completed online open surveys on demographics, surgery and clinical outcomes (group 1); and patient-reported outcome measures (PROMs) including knee-injury osteoarthritis outcome score (KOOS), hip-disability osteoarthritis outcome score (HOOS), Toronto extremity salvage score (TESS) and SF-36 (group 2). Mean follow-up was 70 months (12–374). Consistency checks were performed with Cohen’s kappa statistic for intra-rater agreement.
Results
The first survey was completed by 272 patients (group 1) and 72 patients completed the second (group 2). In group 1, recurrence-rate was 58 % (69/118) after arthroscopic, 36 % (35/97) after open and 50 % (5/10) after combined synovectomy (
p
= 0.003). In group 2, recurrence-rate was 67 % (26/39) after arthroscopic and 51 % (17/33) after open synovectomy (
p
= 0.19). Recurrence-risk was increased for diffuse disease (OR = 16; 95%CI = 3.2–85;
p
< 0.001). Mean function and QOL did not differ after arthroscopic or open synovectomy: KOOS 49
vs.
58 (
p
= 0.24), HOOS 62
vs.
53 (
p
= 0.56), TESS 78
vs.
82 (
p
= 0.86), SF-36 61
vs.
66 (
p
= 0.41). Cohen’s kappa statistic for intra-rater agreement was good to outstanding (κ = 0.68–0.95;
p
< 0.001).
Conclusion
Local recurrence-risk was higher for diffuse-type disease and arthroscopic synovectomy. Functional outcome and QOL were comparable for both types of surgery. Gathering data via crowdsourcing seems a promising and innovative way of evaluating rare diseases including PVNS.</abstract><cop>Berlin/Heidelberg</cop><pub>Springer Berlin Heidelberg</pub><pmid>27169531</pmid><doi>10.1007/s00264-016-3208-1</doi><tpages>10</tpages><oa>free_for_read</oa></addata></record> |
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| ispartof | International orthopaedics, 2016-12, Vol.40 (12), p.2459-2468 |
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| language | eng |
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| source | MEDLINE; Springer Nature - Complete Springer Journals; Elektronische Zeitschriftenbibliothek - Frei zugängliche E-Journals |
| subjects | Adolescent Adult Aged Arthroscopy Child Crowdsourcing Feasibility Studies Female Health Surveys Humans Male Medicine Medicine & Public Health Middle Aged Neoplasm Recurrence, Local - surgery Original Paper Orthopedics Osteoarthritis - surgery Quality of Life Recovery of Function Social Media Synovectomy - methods Synovitis, Pigmented Villonodular - diagnosis Synovitis, Pigmented Villonodular - diagnostic imaging Synovitis, Pigmented Villonodular - surgery Young Adult |
| title | Pigmented villonodular synovitis: a crowdsourcing study of two hundred and seventy two patients |
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