Validation of the International Classification of Functioning, Disability and Health Core Set for chronic widespread pain from the perspective of fibromyalgia patients
Open accessAbstract
Introduction: Functioning is recognized as an important study outcome in chronic widespread pain (CWP). The Comprehensive ICF Core Set for CWP is an application of the International Classification of Functioning, Disability and Health (ICF) with the purpose of representing the typical spectrum of functioning of patients with CWP. The objective of the study was to add evidence to the validation of the Comprehensive ICF Core Set for CWP from the patient perspective. The specific aims were to explore the aspects of functioning and health important to patients with fibromyalgia, and to examine to what extent these aspects are represented by the current version of the Comprehensive ICF Core Set for CWP. Methods: The sampling of patients followed the maximum variation strategy. Sample size was determined by saturation. The focus groups were digitally recorded and transcribed verbatim. The meaning condensation procedure was used for qualitative data analysis. After qualitative data analysis, the identified concepts were linked to ICF categories. Results: Thirty-three patients participated in six focus groups. Fifty-four ICF categories out of 67 categories of the Comprehensive ICF Core Set for CWP were reported by the patients. Forty-eight additional categories that are not covered in the Comprehensive ICF Core Set for CWP were raised. Conclusions: Most ICF categories of the existing version of the Comprehensive ICF Core Set for CWP could be confirmed from the patient perspective. However, several categories not included in the Core Set emerged and should be considered for inclusion.
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Subsequent studies as well as the data of this study showed the importance of quantitative measures of body pain and of the key variables that comprise the SS scale in characterizing fibromyalgia.
“Subsequent studies as well as the data of this study showed the importance of (improved) quantitative measures of body pain (18 -22), and of the key variables that comprise the SS scale in characterizing fibromyalgia.”
From The American College of Rheumatology Preliminary Diagnostic Criteria for Fibromyalgia and Measurement of Symptom Severity (2010) · cites this paper as [20]
The Discussion (page not available in our copy) says pain was the central topic reported by fibromyalgia patients, with 159 concepts linked to sensation of pain. That supports the importance of pain, but this qualitative focus-group study does not establish the importance of improved quantitative measures of body pain—the part to which this citation is attached. (LLM, conf=0.84)
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“Existing ICF categories do not allow for describing the pain location or features of pain quality such as pressure, stabbing or rest pain at a sufficient level of detail [14,15].”
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von Bülow, C., Amris, K., la Cour, K., Danneskiold‐Samsøe, B., & Wæhrens, E. E. (2015) · Scandinavian Journal of Occupational Therapy · doi:10.3109/11038128.2015.1095237 · Cited by 11 · see citing works
“The finding that ADL motor skill deficits frequently limited ADL task performance in women with fibromyalgia is in accordance with previous findings based on self-report [20,21].”
ResultViehoff, P. B., Heerkens, Y. F., van Ravensberg, C. D., Hidding, J. T., Damstra, R. J., Napel, H. T., & Neumann, H. A. M. (2015) · PubMed · Cited by 11 · see citing works
Lage, S. M., Jácome, C. I. O., Oliveira, A., Araújo, A. G., Pereira, D. A. G., & Parreira, V. F. (2018) · Disability and Rehabilitation · doi:10.1080/09638288.2018.1493159 · Cited by 10 · see citing works
“previous studies [18,27,29-31], questions were more specific to each ICF component.”
BackgroundFresk, M., Brodin, N., Grooten, W. J. A., Joseph, C., & Kiessling, A. (2018) · European Journal of Public Health · doi:10.1093/eurpub/cky135 · Cited by 10 · see citing works
Prodinger, B., Rastall, P., Kalra, D., Wooldridge, D., & Carpenter, I. (2018) · Applied Clinical Informatics · doi:10.1055/s-0038-1649488 · Cited by 9 · see citing works
Ewert, T. (2012) · Bundesgesundheitsblatt - Gesundheitsforschung - Gesundheitsschutz · doi:10.1007/s00103-012-1457-8 · Cited by 8 · see citing works
Explaining functioning outcomes across musculoskeletal conditions: a multilevel modelling approach
Cieza, A., Bostan, C., Oberhauser, C., et al. (2010) · Disability and Rehabilitation · doi:10.3109/09638288.2010.515702 · Cited by 8 · see citing works
Self-citationA Rehabilitation Framework: The International Classification of Functioning, Disability and Health
Taylor, W. J., & Geyh, S. (2012) · Wiley eBooks · doi:10.1002/9781118702741.ch2 · Cited by 7 · see citing works
Löfgren, M., Ekholm, J., Broman, L., Njoo, P., & Schult, M. (2013) · Journal of Multidisciplinary Healthcare · doi:10.2147/jmdh.s46501 · Cited by 6 · see citing works
“There are, in fact, several ongoing scientific studies investigating the development of the Brief and Comprehensive ICF Core Sets for CWP. 11,14,33,34 Another limitation may have been the mix of primary diagnoses in the patients included.”
Beeinträchtigungen der Teilhabe bei Patientinnen mit Fibromyalgiesyndrom
Ullrich, A., Farin, E., & Jäckel, W. H. (2012) · Der Schmerz · doi:10.1007/s00482-011-1123-3 · Cited by 5 · see citing works
The Fibromyalgia Decomposition Phenomenon: A Reflexive Thematic Analysis
Fitzmaurice, B. C., Grenfell, R. L., Heneghan, N. R., Rayen, A. T. A., & Soundy, A. (2024) · Behavioral Sciences · doi:10.3390/bs14010047 · Cited by 5 · see citing works
“Early data recognise that the ICF framework can be used towards quantifying functional impairment in chronic widespread pain and FM [8,11,15,16].”
BackgroundMethodChung, P., Khan, F., & Judson, R. (2021) · Journal of Rehabilitation Medicine · doi:10.2340/16501977-2860 · Cited by 5 · see citing works
The Role of Forgiveness in Chronic Pain and Fibromyalgia
Offenbächer, M., Dezutter, J., Vallejo, M. Á., & Toussaint, L. L. (2015) · Springer eBooks · doi:10.1007/978-94-017-9993-5_9 · Cited by 5 · see citing works
Socorro-Cumplido, J. L., Chaler, J., Almirall, M., Sánchez‐Raya, J., Cano, M., & Román‐Viñas, B. (2024) · Journal of Pain · doi:10.1016/j.jpain.2024.104749 · Cited by 4 · see citing works
Disability and functioning assessment of women with RSI/WRMSDs: the use of the ICF checklist
Magalhães, F. D. B., de Lima, M. A. G., Neves, R. D. F., Costa-Black, K. M., Health, N. L., Services, B. S. I. E. H. A. S., de Araújo, T. M., & Porto, L. A. (2019) · Revista Brasileira de Medicina do Trabalho · doi:10.5327/z1679443520190443 · Cited by 4 · see citing works
Cassisi, G., & Sarzi‐Puttini, P. (2022) · Clinical and Experimental Rheumatology · doi:10.55563/clinexprheumatol/mopepq · Cited by 3 · see citing works
“The WHOICF (International Classifications of Function) core sets for CWP were validated in FM patients in 2009, but did not include a number of categories that are very significant for defining FM (5, 6).”
BackgroundMethodRojas, M. F. M., Guilera, G., Patiño, E. M. A., Barrios, M., & Gómez‐Benito, J. (2024) · Disability and Rehabilitation · doi:10.1080/09638288.2024.2390047 · Cited by 6 · see citing works
“Some studies even included additional data to verify whether new categories emerged after reaching saturation [17,32].”
Kurtaiş, Y., Öztuna, D., Genç, A., Kutlay, Ş., Tennant, A., & Küçükdeveci, A. A. (2013) · Journal of Musculoskeletal Pain · doi:10.3109/10582452.2013.827772 · Cited by 3 · see citing works
“To our knowledge, there is only one study investigating the validity of ICF Comprehensive Core Set for CWP (19) from the perspective of 33 FMS patients.”
BackgroundTremolosa, I. A., Guilera, G., Heras, M. L., et al. (2021) · PLoS ONE · doi:10.1371/journal.pone.0244959 · Cited by 3 · see citing works
Fresk, M., Grooten, W. J. A., Brodin, N., et al. (2024) · Journal of Rehabilitation Medicine · doi:10.2340/jrm.v56.36886 · Cited by 1 · see citing works
“Although these ICF categories have been confirmed from the patient’s perspective in fibromyalgia in the validation study by Hieblinger et al. (24), they seem not be central for describing impairments of functional impairments and activity limitations related to work.”
InfluentialEkici, G., ÖNDEŞ, A., & Bülbül, Ö. (2019) · Ergoterapi ve Rehabilitasyon Dergisi · doi:10.30720/ered.579947 · Cited by 1 · see citing works
Aspects of work and health in women with fibromyalgia
Palstam, A. (2015) · Gothenburg University Publications Electronic Archive (Gothenburg University)
Stucki, G. (2010)
Self-citation1 Fysiotherapie in relatie tot het biopsychosociale model
van Burken, P. (2010) · Bohn Stafleu van Loghum eBooks · doi:10.1007/978-90-313-8121-0_1
The Essence of Health and Disability in Persons with Chronic Widespread Pain
München, L.-M.-U. (2011)
Public Health Interventions in ICHI
van Gool, C. H., Hirs, W. M., Napel, H. T., et al. (2012)
Clauw, D. J., Goldenberg, D. L., RUSSELL, A. S., & Russell, I. J. (2010)
From pain mechanisms to functioning: a rehabilitation perspective on fibromyalgia
Iolascon, G., on behalf of the Board of Directors of the Italian Society of Physical and Rehabilitation Medicine (SIMFER), & Moretti, A. (2026) · European Journal of Physical and Rehabilitation Medicine · doi:10.23736/s1973-9087.26.09490-6
Hamedi, D., Mehraban, A. H., Dahmardehei, M., et al. (2026) · Disability and Rehabilitation · doi:10.1080/09638288.2026.2745726
- Authors
- Hieblinger, R., Coenen, M., Stucki, G., Winkelmann, A., & Cieza, A.
- Affiliations
- Ludwig-Maximilians-Universität München (DE)
- Swiss Paraplegic Research (CH)
- Corresponding author
- Stucki, Gerold
- Venue
- Arthritis Research & Therapy
- Published
- 2009-05-14
- Volume
- 11
- Issue
- 3
- Pages
- R67-R67
- ISSN
- 1478-6354 (ISSN-L)
- PMC
- PMC2714113
- OpenAlex
- W2046787765
- Semantic Scholar
- db18b57f1596482f7235c0aeb0048af75bc0adf6
- Cited by
- 57
- References
- 56
- Citations by year
- 2026: 2 · 2024: 4 · 2022: 1 · 2021: 3 · 2020: 1 · 2019: 3 · 2018: 4 · 2016: 1 · 2015: 5 · 2014: 5 · 2013: 4 · 2012: 10
- FWCI
- 4.94
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Locations
- Arthritis Research & Therapy (publishedVersion, cc-by)
- Europe PMC (PubMed Central) (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- ePrints Soton (University of Southampton) (submittedVersion)
- Open access LMU (Ludwid Maxmilian's Universitat Munchen) (submittedVersion)
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Fibromyalgia and Chronic Fatigue Syndrome Research
- Health Sciences › Medicine › Pharmacology › Musculoskeletal pain and rehabilitation
- Health Sciences › Health Professions › Physical Therapy, Sports Therapy and Rehabilitation › Medical Practices and Rehabilitation
- Keywords
- chronic widespread pain, fibromyalgia, International Classification of Functioning, Disability and Health, ICF Core Sets, patient perspectives, functioning
- MeSH terms
- Activities of Daily Living, Adult, Aged, Chronic Disease, Disability Evaluation, Female, Fibromyalgia, Persons with Disabilities, Humans, Male, Middle Aged, Pain, Pain Measurement, International Classification of Diseases
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