{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,6]],"date-time":"2026-10-06T04:25:34Z","timestamp":1791260734888,"version":"4.1.0"},"reference-count":41,"publisher":"Walter de Gruyter GmbH","issue":"1","license":[{"start":{"date-parts":[[2024,1,1]],"date-time":"2024-01-01T00:00:00Z","timestamp":1704067200000},"content-version":"unspecified","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2024,4,16]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Objectives<\/jats:title>\n                    <jats:p>The etiology of fibromyalgia (FM) is disputed, and there is no established cure. Quantitative data on how this may affect patients\u2019 healthcare experiences are scarce. The present study aims to investigate FM patients\u2019 pain-related healthcare experiences and explore factors associated with high satisfaction and pain relief.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>An anonymous, online, and patient-administered survey was developed and distributed to members of the Norwegian Fibromyalgia Association. It addressed their pain-related healthcare experiences from both primary and specialist care. Odds ratios for healthcare satisfaction and pain relief were estimated by binary logistic regression. Directed acyclic graphs guided the multivariable analyses.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      The patients (\n                      <jats:italic>n<\/jats:italic>\n                      = 1,626, mean age: 51 years) were primarily women (95%) with a 21.8-year mean pain duration and 12.7 years in pain before diagnosis. One-third did not understand why they had pain, and 56.6% did not know how to get better. More than half had not received satisfactory information on their pain cause from a physician, and guidance on how to improve was reported below medium. Patients regretted a lack of medical specialized competence on muscle pain and reported many unmet needs, including regular follow-up and pain assessment. Physician-mediated pain relief was low, and guideline adherence was deficient. Only 14.8% were satisfied with non-physician health providers evaluating and treating their pain, and 21.5% were satisfied (46.9% dissatisfied) with their global pain-related healthcare. Patients\u2019 knowledge of their condition, physicians\u2019 pain competence and provision of information and guidance, agreement in explanations and advice, and the absence of unmet needs significantly increased the odds of both healthcare satisfaction and pain relief.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>Our survey describes deficiencies in FM patients\u2019 pain-related healthcare and suggests areas for improvement to increase healthcare satisfaction and pain relief. (REC# 2019\/845, 09.05.19).<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1515\/sjpain-2023-0141","type":"journal-article","created":{"date-parts":[[2024,4,16]],"date-time":"2024-04-16T11:55:20Z","timestamp":1713268520000},"source":"Crossref","is-referenced-by-count":11,"title":["Healthcare experiences of fibromyalgia patients and their associations with satisfaction and pain relief. A patient survey"],"prefix":"10.1515","volume":"24","author":[{"given":"Sigrid H\u00f8rven","family":"Wigers","sequence":"first","affiliation":[{"name":"Department of General Practice, Institute of Health and Society, University of Oslo , P.O. Box 1130, Blindern, NO-0318 Oslo , Norway"},{"name":"Unicare Jel\u00f8y , Moss , Norway"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marit B.","family":"Veier\u00f8d","sequence":"additional","affiliation":[{"name":"Oslo Centre for Biostatistics and Epidemiology, Department of Biostatistics, Institute of Basic Medical Sciences, University of Oslo , Oslo , Norway"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anne Marit","family":"Mengshoel","sequence":"additional","affiliation":[{"name":"Department of Interdisciplinary Health Sciences, Institute of Health and Society, University of Oslo , Oslo , Norway"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Karin \u00d8ien","family":"Forseth","sequence":"additional","affiliation":[{"name":"Independent Researcher , Vestre Sand\u00f8ya , Norway"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mina Piiksi","family":"Dahli","sequence":"additional","affiliation":[{"name":"Department of General Practice, Institute of Health and Society, University of Oslo , P.O. Box 1130, Blindern, NO-0318 Oslo , Norway"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Niels Gunnar","family":"Juel","sequence":"additional","affiliation":[{"name":"Department of General Practice, Institute of Health and Society, University of Oslo , P.O. Box 1130, Blindern, NO-0318 Oslo , Norway"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"B\u00e5rd","family":"Natvig","sequence":"additional","affiliation":[{"name":"Department of General Practice, Institute of Health and Society, University of Oslo , P.O. Box 1130, Blindern, NO-0318 Oslo , Norway"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"374","published-online":{"date-parts":[[2024,4,16]]},"reference":[{"key":"2025120910063078688_j_sjpain-2023-0141_ref_001","doi-asserted-by":"crossref","unstructured":"Abd-Allah F, Abdulle AM, Abera SF, Abu-Raddad LJ, Adetokunboh O, Afshin A, et al. Global, regional, and national incidence, prevalence, and years lived with disability for 328 diseases and injuries for 195 countries, 1990\u20132016: A systematic analysis for the Global Burden of Disease Study 2016. Lancet. 2017;390:1211\u201359.","DOI":"10.1016\/S0140-6736(17)32154-2"},{"key":"2025120910063078688_j_sjpain-2023-0141_ref_002","doi-asserted-by":"crossref","unstructured":"Andrews P, Steultjens M, Riskowski J. Chronic widespread pain prevalence in the general population: A systematic review. Eur J Pain. 2018;22:5\u201318.","DOI":"10.1002\/ejp.1090"},{"key":"2025120910063078688_j_sjpain-2023-0141_ref_003","doi-asserted-by":"crossref","unstructured":"Wolfe F. The history of the idea of widespread pain and its relation to fibromyalgia. Scand J Pain. 2020;20:647\u201350.","DOI":"10.1515\/sjpain-2020-0072"},{"key":"2025120910063078688_j_sjpain-2023-0141_ref_004","doi-asserted-by":"crossref","unstructured":"Nicholas M, Vlaeyen JWS, Rief W, Barke A, Aziz Q, Benoliel R, et al. The IASP classification of chronic pain for ICD-11: Chronic primary pain. Pain. 2019;160:28\u201337.","DOI":"10.1097\/j.pain.0000000000001390"},{"key":"2025120910063078688_j_sjpain-2023-0141_ref_005","doi-asserted-by":"crossref","unstructured":"Yunus M, Masi AT, Calabro JJ, Miller KA, Feigenbaum SL. Primary fibromyalgia (fibrositis): Clinical study of 50 patients with matched normal controls. Semin Arthritis Rheum. 1981;11:151\u201371.","DOI":"10.1016\/0049-0172(81)90096-2"},{"key":"2025120910063078688_j_sjpain-2023-0141_ref_006","doi-asserted-by":"crossref","unstructured":"Wolfe F, Clauw DJ, Fitzcharles MA, Goldenberg DL, H\u00e4user W, Katz RL, et al. 2016 Revisions to the 2010\/2011 fibromyalgia diagnostic criteria. Semin Arthritis Rheum. 2016;46:319\u201329.","DOI":"10.1016\/j.semarthrit.2016.08.012"},{"key":"2025120910063078688_j_sjpain-2023-0141_ref_007","doi-asserted-by":"crossref","unstructured":"Gaskin DJ, Richard P. The economic costs of pain in the United States. J Pain. 2012;13:715\u201324.","DOI":"10.1016\/j.jpain.2012.03.009"},{"key":"2025120910063078688_j_sjpain-2023-0141_ref_008","doi-asserted-by":"crossref","unstructured":"Morales-Espinoza EM, Kostov B, Salami DC, Perez ZH, Rosalen AP, Molina JO, et al. Complexity, comorbidity, and health care costs associated with chronic widespread pain in primary care. Pain. 2016;157:818\u201326.","DOI":"10.1097\/j.pain.0000000000000440"},{"key":"2025120910063078688_j_sjpain-2023-0141_ref_009","doi-asserted-by":"crossref","unstructured":"Kumbhare D, Ahmed S, Sander T, Grosman-Rimon L, Srbely J. A survey of physicians\u2019 knowledge and adherence to the diagnostic criteria for fibromyalgia. Pain Med. 2018;19:1254\u201364.","DOI":"10.1093\/pm\/pnx271"},{"key":"2025120910063078688_j_sjpain-2023-0141_ref_010","doi-asserted-by":"crossref","unstructured":"Perrot S, Choy E, Petersel D, Ginovker A, Kramer E. Survey of physician experiences and perceptions about the diagnosis and treatment of fibromyalgia. BMC Health Serv Res. 2012;12:356.","DOI":"10.1186\/1472-6963-12-356"},{"key":"2025120910063078688_j_sjpain-2023-0141_ref_011","doi-asserted-by":"crossref","unstructured":"Album D, Johannessen LEF, Rasmussen EB. Stability and change in disease prestige: A comparative analysis of three surveys spanning a quarter of a century. Soc Sci Med. 2017;180:45\u201351.","DOI":"10.1016\/j.socscimed.2017.03.020"},{"key":"2025120910063078688_j_sjpain-2023-0141_ref_012","doi-asserted-by":"crossref","unstructured":"Briones-Vozmediano E, Vives-Cases C, Ronda-P\u00e9rez E, Gil-Gonz\u00e1lez D. Patients\u2019 and professionals\u2019 views on managing fibromyalgia. Pain Res Manag. 2013;18:19\u201324.","DOI":"10.1155\/2013\/742510"},{"key":"2025120910063078688_j_sjpain-2023-0141_ref_013","doi-asserted-by":"crossref","unstructured":"Brauer SG, Yoon JD, Curlin FA. Physician satisfaction in treating medically unexplained symptoms. South Med J. 2017;110:386\u201391.","DOI":"10.14423\/SMJ.0000000000000643"},{"key":"2025120910063078688_j_sjpain-2023-0141_ref_014","doi-asserted-by":"crossref","unstructured":"Loeser JD, Schatman ME. Chronic pain management in medical education: a disastrous omission. Postgrad Med. 2017;129:332\u20135.","DOI":"10.1080\/00325481.2017.1297668"},{"key":"2025120910063078688_j_sjpain-2023-0141_ref_015","doi-asserted-by":"crossref","unstructured":"Silverwood V, Chew-Graham CA, Raybould I, Thomas B, Peters S. \u2018If it\u2019s a medical issue I would have covered it by now\u2019: Learning about fibromyalgia through the hidden curriculum: a qualitative study. BMC Med Educ. 2017;17:160.","DOI":"10.1186\/s12909-017-0972-6"},{"key":"2025120910063078688_j_sjpain-2023-0141_ref_016","doi-asserted-by":"crossref","unstructured":"Sessle B. Unrelieved pain: A crisis. Pain Res Manag. 2011;16:416\u201320.","DOI":"10.1155\/2011\/513423"},{"key":"2025120910063078688_j_sjpain-2023-0141_ref_017","doi-asserted-by":"crossref","unstructured":"Staud R. Peripheral pain mechanisms in chronic widespread pain. Best Pract Res Clin Rheumatol. 2011;25:155\u201364.","DOI":"10.1016\/j.berh.2010.01.010"},{"key":"2025120910063078688_j_sjpain-2023-0141_ref_018","doi-asserted-by":"crossref","unstructured":"Henriksson KG. Is fibromyalgia a distinct clinical entity? Pain mechanisms in fibromyalgia syndrome. A myologist\u2019s view. Baillieres Best Pract Res Clin Rheumatol. 1999;13:455\u201361.","DOI":"10.1053\/berh.1999.0035"},{"key":"2025120910063078688_j_sjpain-2023-0141_ref_019","doi-asserted-by":"crossref","unstructured":"Affaitati G, Costantini R, Tana C, Cipollone F, Giamberardino MA. Co-occurrence of pain syndromes. J Neural Transm (Vienna). 2020;127:625\u201346.","DOI":"10.1007\/s00702-019-02107-8"},{"key":"2025120910063078688_j_sjpain-2023-0141_ref_020","doi-asserted-by":"crossref","unstructured":"Mengshoel AM. A long, winding trajectory of suffering with no definite start and uncertain future prospects - narratives of individuals recently diagnosed with fibromyalgia. Int J Qual Stud Health Well-Being. 2022;17:2056956. 10.1080\/17482631.2022.2056956.","DOI":"10.1080\/17482631.2022.2056956"},{"key":"2025120910063078688_j_sjpain-2023-0141_ref_021","doi-asserted-by":"crossref","unstructured":"Paul-Savoie E, Bourgault P, Potvin S, Gosselin E, Lafrenaye S. The impact of pain invisibility on patient-centered care and empathetic attitude in chronic pain management. Pain Res Manag. 2018;2018:6375713. 10.1155\/2018\/6375713.","DOI":"10.1155\/2018\/6375713"},{"key":"2025120910063078688_j_sjpain-2023-0141_ref_022","doi-asserted-by":"crossref","unstructured":"Doebl S, Hollick RJ, Beasley M, Choy E, Macfarlane GJ. Comparing the impact of symptoms and health care experiences of people who have and have not received a diagnosis of fibromyalgia: A cross-sectional survey within the PACFiND study. Arthritis Care Res (Hoboken). 2022;74:1894\u2013902.","DOI":"10.1002\/acr.24723"},{"key":"2025120910063078688_j_sjpain-2023-0141_ref_023","doi-asserted-by":"crossref","unstructured":"Doebl S, Macfarlane GJ, Hollick RJ. \u201cNo one wants to look after the fibro patient\u201d. Understanding models, and patient perspectives, of care for fibromyalgia: reviews of current evidence. Pain. 2020;161:1716\u201325.","DOI":"10.1097\/j.pain.0000000000001870"},{"key":"2025120910063078688_j_sjpain-2023-0141_ref_024","doi-asserted-by":"crossref","unstructured":"Gjengedal E, Sviland R, Moi AL, Ellingsen S, Flinterud SI, Sekse RJT, et al. Patients\u2019 quest for recognition and continuity in health care: Time for a new research agenda? Scand J Caring Sci. 2019;33:978\u201385.","DOI":"10.1111\/scs.12696"},{"key":"2025120910063078688_j_sjpain-2023-0141_ref_025","doi-asserted-by":"crossref","unstructured":"Macfarlane GJ, Kronisch C, Dean LE, Atzeni F, H\u00e4user W, Flu\u00df E, et al. EULAR revised recommendations for the management of fibromyalgia. Ann Rheum Dis. 2017;76:318\u201328.","DOI":"10.1136\/annrheumdis-2016-209724"},{"key":"2025120910063078688_j_sjpain-2023-0141_ref_026","doi-asserted-by":"crossref","unstructured":"Fitzcharles MA, Ste-Marie PA, Goldenberg DL, Pereira JX, Abbey S, Choini\u00e8re M, et al. 2012 Canadian Guidelines for the diagnosis and management of fibromyalgia syndrome: executive summary. Pain Res Manag. 2013;18(3):119\u201326.","DOI":"10.1155\/2013\/918216"},{"key":"2025120910063078688_j_sjpain-2023-0141_ref_027","doi-asserted-by":"crossref","unstructured":"Arnold LM, Clauw DJ. Challenges of implementing fibromyalgia treatment guidelines in current clinical practice. Postgrad Med. 2017;129:709\u201314.","DOI":"10.1080\/00325481.2017.1336417"},{"key":"2025120910063078688_j_sjpain-2023-0141_ref_028","doi-asserted-by":"crossref","unstructured":"Nost TH, Stedenfeldt M, Steinsbekk A. \u201cNo one wants you\u201d - a qualitative study on the experiences of receiving rejection from tertiary care pain centres. Scand J Pain. 2020;20:525\u201332.","DOI":"10.1515\/sjpain-2019-0175"},{"key":"2025120910063078688_j_sjpain-2023-0141_ref_029","doi-asserted-by":"crossref","unstructured":"Choy E, Perrot S, Leon T, Kaplan J, Petersel D, Ginovker A, et al. A patient survey of the impact of fibromyalgia and the journey to diagnosis. BMC Health Serv Res. 2010;10:102. 10.1186\/1472-6963-10-102.","DOI":"10.1186\/1472-6963-10-102"},{"key":"2025120910063078688_j_sjpain-2023-0141_ref_030","doi-asserted-by":"crossref","unstructured":"Mengshoel AM, Sim J, Ahlsen B, Madden S. Diagnostic experience of patients with fibromyalgia - A meta-ethnography. Chronic Illn. 2018;14:194\u2013211.","DOI":"10.1177\/1742395317718035"},{"key":"2025120910063078688_j_sjpain-2023-0141_ref_031","doi-asserted-by":"crossref","unstructured":"Gendelman O, Amital H, Bar-On Y, Ben-Ami Shor D, Amital D, Tiosano S, et al. Time to diagnosis of fibromyalgia and factors associated with delayed diagnosis in primary care. Best Pract Res Clin Rheumatol. 2018;32:489\u201399.","DOI":"10.1016\/j.berh.2019.01.019"},{"key":"2025120910063078688_j_sjpain-2023-0141_ref_032","unstructured":"Lauche R, H\u00e4user W, Jung E, Erbsl\u00f6h-M\u00f6ller B, Gesmann M, K\u00fchn-Becker H, et al. Patient-related predictors of treatment satisfaction of patients with fibromyalgia syndrome: results of a cross-sectional survey. Clin Exp Rheumatol. 2013;31(Suppl 79):S34\u201340."},{"key":"2025120910063078688_j_sjpain-2023-0141_ref_033","doi-asserted-by":"crossref","unstructured":"Jung E, Erbsl\u00f6h-M\u00f6ller B, Gesmann M, K\u00fchn-Becker H, Petermann F, Langhorst J, et al. Are members of fibromyalgia syndrome self-help groups \u201cdifferent\u201d? Demographic and clinical characteristics of members and non-members of fibromyalgia syndrome self-help groups. Z Rheumatol. 2013;72:474\u201381.","DOI":"10.1007\/s00393-012-1119-0"},{"key":"2025120910063078688_j_sjpain-2023-0141_ref_034","doi-asserted-by":"crossref","unstructured":"Hughes G, Martinez C, Myon E, Ta\u00efeb C, Wessely S. The impact of a diagnosis of fibromyalgia on health care resource use by primary care patients in the UK: An observational study based on clinical practice. Arthritis Rheum. 2006;54:177\u201383.","DOI":"10.1002\/art.21545"},{"key":"2025120910063078688_j_sjpain-2023-0141_ref_035","doi-asserted-by":"crossref","unstructured":"Lynch ME, Campbell F, Clark AJ, Dunbar MJ, Goldstein D, Peng P, et al. A systematic review of the effect of waiting for treatment for chronic pain. Pain. 2008;136:97\u2013116.","DOI":"10.1016\/j.pain.2007.06.018"},{"key":"2025120910063078688_j_sjpain-2023-0141_ref_036","doi-asserted-by":"crossref","unstructured":"Annemans L, Wessely S, Spaepen E, Caekelbergh K, Caub\u00e8re JP, Le Lay K, et al. Health economic consequences related to the diagnosis of fibromyalgia syndrome. Arthritis Rheum. 2008;58:895\u2013902.","DOI":"10.1002\/art.23265"},{"key":"2025120910063078688_j_sjpain-2023-0141_ref_037","doi-asserted-by":"crossref","unstructured":"Wilson N, Beasley MJ, Pope C, Dulake D, Moir LJ, Hollick RJ, et al. UK healthcare services for people with fibromyalgia: Results from two web-based national surveys (the PACFiND study). BMC Health Serv Res. 2022;22:989. 10.1186\/s12913-022-08324-4.","DOI":"10.1186\/s12913-022-08324-4"},{"key":"2025120910063078688_j_sjpain-2023-0141_ref_038","doi-asserted-by":"crossref","unstructured":"Peters ML. Emotional and cognitive influences on pain experience. Mod Trends Pharmacopsychiatry. 2015;30:138\u201352.","DOI":"10.1159\/000435938"},{"key":"2025120910063078688_j_sjpain-2023-0141_ref_039","unstructured":"Bonica JJ. The management of pain. In John J. Bonica, John D. Loeser, C. Richard Chapman, Wilbert E. Fordyce, editors. 2nd edn. Philadelphia London: Lea & Febiger; 1990."},{"key":"2025120910063078688_j_sjpain-2023-0141_ref_040","doi-asserted-by":"crossref","unstructured":"B\u00e4ckryd E. What do we mean by \u201cbiopsychosocial\u201d in pain medicine? Scand J Pain. 2023;23:621\u20132.","DOI":"10.1515\/sjpain-2022-0162"},{"key":"2025120910063078688_j_sjpain-2023-0141_ref_041","doi-asserted-by":"crossref","unstructured":"Johansson M, Guyatt G, Montori V. Guidelines should consider clinicians\u2019 time needed to treat. BMJ. 2023;380:e072953. 10.1136\/bmj-2022-072953.","DOI":"10.1136\/bmj-2022-072953"}],"container-title":["Scandinavian Journal of Pain"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.degruyterbrill.com\/document\/doi\/10.1515\/sjpain-2023-0141\/xml","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/www.degruyterbrill.com\/document\/doi\/10.1515\/sjpain-2023-0141\/pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,12,9]],"date-time":"2025-12-09T13:09:54Z","timestamp":1765285794000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.degruyterbrill.com\/document\/doi\/10.1515\/sjpain-2023-0141\/html"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,1,1]]},"references-count":41,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2024,3,7]]},"published-print":{"date-parts":[[2024,3,7]]}},"alternative-id":["10.1515\/sjpain-2023-0141"],"URL":"https:\/\/doi.org\/10.1515\/sjpain-2023-0141","relation":{},"ISSN":["1877-8879"],"issn-type":[{"value":"1877-8879","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,1,1]]},"article-number":"20230141"}}