No Cover Image

Journal article 40 views 6 downloads

Medically explained symptoms: a mixed methods study of diagnostic, symptom and support experiences of patients with lupus and related systemic autoimmune diseases

Melanie Sloan, RUPERT HARWOOD, Stephen Sutton, David D’Cruz, Paul Howard, Chris Wincup Orcid Logo, James Brimicombe, Caroline Gordon

Rheumatology Advances in Practice, Volume: 4, Issue: 1

Swansea University Author: RUPERT HARWOOD

  • 71734.VoR.pdf

    PDF | Version of Record

    Copyright: The Author(s) 2020. This is an Open Access article distributed under the terms of the Creative Commons Attribution License.

    Download (386.83KB)

Check full text

DOI (Published version): 10.1093/rap/rkaa006

Abstract

ObjectivesThe aim was to explore patient experiences and views of their symptoms, delays in diagnosis, misdiagnoses and medical support, to identify common experiences, preferences and unmet needs.MethodsFollowing a review of LUPUS UK’s online forum, a questionnaire was posted online during December...

Full description

Published in: Rheumatology Advances in Practice
ISSN: 2514-1775
Published: Oxford University Press (OUP) 2020
Online Access: Check full text

URI: https://cronfa.swan.ac.uk/Record/cronfa71734
first_indexed 2026-04-13T11:07:24Z
last_indexed 2026-04-14T04:53:28Z
id cronfa71734
recordtype SURis
fullrecord <?xml version="1.0"?><rfc1807><datestamp>2026-04-13T13:10:47.2378010</datestamp><bib-version>v2</bib-version><id>71734</id><entry>2026-04-13</entry><title>Medically explained symptoms: a mixed methods study of diagnostic, symptom and support experiences of patients with lupus and related systemic autoimmune diseases</title><swanseaauthors><author><sid>dd86f6440382422aff81e48faba9a002</sid><firstname>RUPERT</firstname><surname>HARWOOD</surname><name>RUPERT HARWOOD</name><active>true</active><ethesisStudent>false</ethesisStudent></author></swanseaauthors><date>2026-04-13</date><abstract>ObjectivesThe aim was to explore patient experiences and views of their symptoms, delays in diagnosis, misdiagnoses and medical support, to identify common experiences, preferences and unmet needs.MethodsFollowing a review of LUPUS UK&#x2019;s online forum, a questionnaire was posted online during December 2018. This was an exploratory mixed methods study, with qualitative data analysed thematically and combined with descriptive and statistically analysed quantitative data.ResultsThere were 233 eligible respondents. The mean time to diagnosis from first experiencing symptoms was 6&#x2009;years 11&#x2009;months. Seventy-six per cent reported at least one misdiagnosis for symptoms subsequently attributed to their systemic autoimmune rheumatic disease. Mental health/non-organic misdiagnoses constituted 47% of reported misdiagnoses and were indicated to have reduced trust in physicians and to have changed future health-care-seeking behaviour. Perceptions of physician knowledge and listening skills were highly correlated with patient ratings of trust. The symptom burden was high. Fatigue had the greatest impact on activities of daily living, yet the majority reported receiving no support or poor support in managing it. Assessing and treating patients holistically and with empathy was strongly felt to increase diagnostic accuracy and improve medical relationships.ConclusionPatient responses indicated that timely diagnosis could be facilitated if physicians had greater knowledge of lupus/related systemic autoimmune diseases and were more amenable to listening to and believing patient reports of their symptoms. Patient priorities included physicians viewing them holistically, with more emotional support and assistance in improving quality of life, especially in relation to fatigue.</abstract><type>Journal Article</type><journal>Rheumatology Advances in Practice</journal><volume>4</volume><journalNumber>1</journalNumber><paginationStart/><paginationEnd/><publisher>Oxford University Press (OUP)</publisher><placeOfPublication/><isbnPrint/><isbnElectronic/><issnPrint/><issnElectronic>2514-1775</issnElectronic><keywords>systemic lupus erythematosus, patient views, quality of life, patient&#x2013;physician interaction, misdiagnoses, symptoms, UCTD, diagnostic delays, medical support</keywords><publishedDay>26</publishedDay><publishedMonth>2</publishedMonth><publishedYear>2020</publishedYear><publishedDate>2020-02-26</publishedDate><doi>10.1093/rap/rkaa006</doi><url/><notes/><college>COLLEGE NANME</college><CollegeCode>COLLEGE CODE</CollegeCode><institution>Swansea University</institution><apcterm>Another institution paid the OA fee</apcterm><funders>This work was supported by LUPUS UK.</funders><projectreference/><lastEdited>2026-04-13T13:10:47.2378010</lastEdited><Created>2026-04-13T12:03:59.9437037</Created><path><level id="1">Faculty of Medicine, Health and Life Sciences</level><level id="2">Swansea University Medical School - Biomedical Science</level></path><authors><author><firstname>Melanie</firstname><surname>Sloan</surname><order>1</order></author><author><firstname>RUPERT</firstname><surname>HARWOOD</surname><order>2</order></author><author><firstname>Stephen</firstname><surname>Sutton</surname><order>3</order></author><author><firstname>David</firstname><surname>D&#x2019;Cruz</surname><order>4</order></author><author><firstname>Paul</firstname><surname>Howard</surname><order>5</order></author><author><firstname>Chris</firstname><surname>Wincup</surname><orcid>0000-0002-8742-8311</orcid><order>6</order></author><author><firstname>James</firstname><surname>Brimicombe</surname><order>7</order></author><author><firstname>Caroline</firstname><surname>Gordon</surname><order>8</order></author></authors><documents><document><filename>71734__36496__7127267020374850ae11d2439a3f097f.pdf</filename><originalFilename>71734.VoR.pdf</originalFilename><uploaded>2026-04-13T13:06:23.6206184</uploaded><type>Output</type><contentLength>396112</contentLength><contentType>application/pdf</contentType><version>Version of Record</version><cronfaStatus>true</cronfaStatus><documentNotes>Copyright: The Author(s) 2020. This is an Open Access article distributed under the terms of the Creative Commons Attribution License.</documentNotes><copyrightCorrect>true</copyrightCorrect><language>eng</language><licence>http://creativecommons.org/licenses/by/4.0/)</licence></document></documents><OutputDurs/></rfc1807>
spelling 2026-04-13T13:10:47.2378010 v2 71734 2026-04-13 Medically explained symptoms: a mixed methods study of diagnostic, symptom and support experiences of patients with lupus and related systemic autoimmune diseases dd86f6440382422aff81e48faba9a002 RUPERT HARWOOD RUPERT HARWOOD true false 2026-04-13 ObjectivesThe aim was to explore patient experiences and views of their symptoms, delays in diagnosis, misdiagnoses and medical support, to identify common experiences, preferences and unmet needs.MethodsFollowing a review of LUPUS UK’s online forum, a questionnaire was posted online during December 2018. This was an exploratory mixed methods study, with qualitative data analysed thematically and combined with descriptive and statistically analysed quantitative data.ResultsThere were 233 eligible respondents. The mean time to diagnosis from first experiencing symptoms was 6 years 11 months. Seventy-six per cent reported at least one misdiagnosis for symptoms subsequently attributed to their systemic autoimmune rheumatic disease. Mental health/non-organic misdiagnoses constituted 47% of reported misdiagnoses and were indicated to have reduced trust in physicians and to have changed future health-care-seeking behaviour. Perceptions of physician knowledge and listening skills were highly correlated with patient ratings of trust. The symptom burden was high. Fatigue had the greatest impact on activities of daily living, yet the majority reported receiving no support or poor support in managing it. Assessing and treating patients holistically and with empathy was strongly felt to increase diagnostic accuracy and improve medical relationships.ConclusionPatient responses indicated that timely diagnosis could be facilitated if physicians had greater knowledge of lupus/related systemic autoimmune diseases and were more amenable to listening to and believing patient reports of their symptoms. Patient priorities included physicians viewing them holistically, with more emotional support and assistance in improving quality of life, especially in relation to fatigue. Journal Article Rheumatology Advances in Practice 4 1 Oxford University Press (OUP) 2514-1775 systemic lupus erythematosus, patient views, quality of life, patient–physician interaction, misdiagnoses, symptoms, UCTD, diagnostic delays, medical support 26 2 2020 2020-02-26 10.1093/rap/rkaa006 COLLEGE NANME COLLEGE CODE Swansea University Another institution paid the OA fee This work was supported by LUPUS UK. 2026-04-13T13:10:47.2378010 2026-04-13T12:03:59.9437037 Faculty of Medicine, Health and Life Sciences Swansea University Medical School - Biomedical Science Melanie Sloan 1 RUPERT HARWOOD 2 Stephen Sutton 3 David D’Cruz 4 Paul Howard 5 Chris Wincup 0000-0002-8742-8311 6 James Brimicombe 7 Caroline Gordon 8 71734__36496__7127267020374850ae11d2439a3f097f.pdf 71734.VoR.pdf 2026-04-13T13:06:23.6206184 Output 396112 application/pdf Version of Record true Copyright: The Author(s) 2020. This is an Open Access article distributed under the terms of the Creative Commons Attribution License. true eng http://creativecommons.org/licenses/by/4.0/)
title Medically explained symptoms: a mixed methods study of diagnostic, symptom and support experiences of patients with lupus and related systemic autoimmune diseases
spellingShingle Medically explained symptoms: a mixed methods study of diagnostic, symptom and support experiences of patients with lupus and related systemic autoimmune diseases
RUPERT HARWOOD
title_short Medically explained symptoms: a mixed methods study of diagnostic, symptom and support experiences of patients with lupus and related systemic autoimmune diseases
title_full Medically explained symptoms: a mixed methods study of diagnostic, symptom and support experiences of patients with lupus and related systemic autoimmune diseases
title_fullStr Medically explained symptoms: a mixed methods study of diagnostic, symptom and support experiences of patients with lupus and related systemic autoimmune diseases
title_full_unstemmed Medically explained symptoms: a mixed methods study of diagnostic, symptom and support experiences of patients with lupus and related systemic autoimmune diseases
title_sort Medically explained symptoms: a mixed methods study of diagnostic, symptom and support experiences of patients with lupus and related systemic autoimmune diseases
author_id_str_mv dd86f6440382422aff81e48faba9a002
author_id_fullname_str_mv dd86f6440382422aff81e48faba9a002_***_RUPERT HARWOOD
author RUPERT HARWOOD
author2 Melanie Sloan
RUPERT HARWOOD
Stephen Sutton
David D’Cruz
Paul Howard
Chris Wincup
James Brimicombe
Caroline Gordon
format Journal article
container_title Rheumatology Advances in Practice
container_volume 4
container_issue 1
publishDate 2020
institution Swansea University
issn 2514-1775
doi_str_mv 10.1093/rap/rkaa006
publisher Oxford University Press (OUP)
college_str Faculty of Medicine, Health and Life Sciences
hierarchytype
hierarchy_top_id facultyofmedicinehealthandlifesciences
hierarchy_top_title Faculty of Medicine, Health and Life Sciences
hierarchy_parent_id facultyofmedicinehealthandlifesciences
hierarchy_parent_title Faculty of Medicine, Health and Life Sciences
department_str Swansea University Medical School - Biomedical Science{{{_:::_}}}Faculty of Medicine, Health and Life Sciences{{{_:::_}}}Swansea University Medical School - Biomedical Science
document_store_str 1
active_str 0
description ObjectivesThe aim was to explore patient experiences and views of their symptoms, delays in diagnosis, misdiagnoses and medical support, to identify common experiences, preferences and unmet needs.MethodsFollowing a review of LUPUS UK’s online forum, a questionnaire was posted online during December 2018. This was an exploratory mixed methods study, with qualitative data analysed thematically and combined with descriptive and statistically analysed quantitative data.ResultsThere were 233 eligible respondents. The mean time to diagnosis from first experiencing symptoms was 6 years 11 months. Seventy-six per cent reported at least one misdiagnosis for symptoms subsequently attributed to their systemic autoimmune rheumatic disease. Mental health/non-organic misdiagnoses constituted 47% of reported misdiagnoses and were indicated to have reduced trust in physicians and to have changed future health-care-seeking behaviour. Perceptions of physician knowledge and listening skills were highly correlated with patient ratings of trust. The symptom burden was high. Fatigue had the greatest impact on activities of daily living, yet the majority reported receiving no support or poor support in managing it. Assessing and treating patients holistically and with empathy was strongly felt to increase diagnostic accuracy and improve medical relationships.ConclusionPatient responses indicated that timely diagnosis could be facilitated if physicians had greater knowledge of lupus/related systemic autoimmune diseases and were more amenable to listening to and believing patient reports of their symptoms. Patient priorities included physicians viewing them holistically, with more emotional support and assistance in improving quality of life, especially in relation to fatigue.
published_date 2020-02-26T07:40:14Z
_version_ 1862698809793970176
score 11.102298

Similar Items