The DOI matches its Crossref record; 117 of the 119 references it cites were found in a registry or an index.
Patients’ experiences of chronic non-malignant musculoskeletal pain: a qualitative systematic review
Open accessAbstract
BACKGROUND: Musculoskeletal (MSK) pain is one of the most predominant types of pain and accounts for a large portion of the primary care workload. AIM: To systematically review and integrate the findings of qualitative research to increase understanding of patients' experiences of chronic non-malignant MSK pain. DESIGN AND SETTING: Synthesis of qualitative research using meta-ethnography using six electronic databases up until February 2012 (Medline, Embase, Cinahl, Psychinfo, Amed and HMIC). METHOD: Databases were searched from their inception until February 2012, supplemented by hand-searching contents lists of specific journals for 2001-2011 and citation tracking. Full published reports of qualitative studies exploring adults' own experience of chronic non-malignant MSK pain were eligible for inclusion. RESULTS: Out of 24 992 titles, 676 abstracts, and 321 full texts were screened, 77 papers reporting 60 individual studies were included. A new concept of pain as an adversarial struggle emerged. This adversarial struggle was to: 1) affirm self; 2) reconstruct self in time; 3) construct an explanation for suffering; 4) negotiate the healthcare system; and 5) prove legitimacy. However, despite this struggle there is also a sense for some patients of 6) moving forward alongside pain. CONCLUSIONS: This review provides a theoretical underpinning for improving patient experience and facilitating a therapeutic collaborative partnership. A conceptual model is presented, which offers opportunities for improvement by involving patients, showing them their pain is understood, and forming the basis to help patients move forward alongside their pain.
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“The way pain patients feel is often dismissed in health care [8,9].”
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“In spite of a number of recent studies in this area, however, in their meta-analysis, Bawa et al. demonstrated only limited evidence in support of mindfulness-based interventions for patients with chronic pain and called for more and better studies in this area [70, 71].”
From Identification and Management of Chronic Pain in Primary Care: a Review (2016) · cites this paper as [71]
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Meiling, J. B., Moman, R. N., Pagan-Rosado, R. D., Kinzelman-Vesely, E. A., Hunt, C., & Hooten, W. M. (2021) · Journal of Pain Research · doi:10.2147/jpr.s327504 · Cited by 3
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Chibnall, J. T., & Tait, R. C. (2021) · Pain Medicine · doi:10.1093/pm/pnab337 · Cited by 3
Kurz, R., & Hebron, C. (2022) · Physiotherapy Theory and Practice · doi:10.1080/09593985.2022.2144782 · Cited by 4
“This lack of a clear medical diagnosis can create uncertainty, with those experiencing pain finding it difficult to understand why their symptoms are ongoing (Toye et al., 2013).”
BackgroundNelson, E.-U. E., Akintunde, A. A., & Ojo, Y. A. (2023) · Cogent Social Sciences · doi:10.1080/23311886.2023.2228080 · Cited by 3
“Corroborating previous studies (Glenton, 2003; Lillrank, 2003; Toye et al., 2013; Zajacova et al., 2021), the findings of this study show that chronic pain was intractable, caused untold suffering and had negative effects on the lives of the participants.”
BackgroundResultNizza, I. E., Smith, J. A., & Kirkham, J. A. (2023) · European Journal of Pain · doi:10.1002/ejp.2214 · Cited by 5
“Their experience echoes evidence that people with CP fight to retain their old identity and struggle to adjust to who they have become (Hellstrom, 2001; Smith & Osborn, 2007; Toye et al., 2013).”
Painogenicity: an ecological approach to reduce the burden of chronic pain
Johnson, M. I. (2024) · Public Health · doi:10.1016/j.puhe.2024.02.022 · Cited by 3
Patient Perceptions of Physician Burden in the Treatment of Chronic Pain
Tait, R. C., Chibnall, J. T., & Kalauokalani, D. K. (2021) · Journal of Pain · doi:10.1016/j.jpain.2021.03.140 · Cited by 3
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“8 Moreover, interdisciplinary approaches can improve psychological well-being, physical functioning, coping skills and reduce the need for medications.”
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“…DHSs within health services in a way that provides timely, integrative and personalized care could help young people who are often left “waiting in pain” [23,32,58–61], and better support them to navigate health services and systems; a barrier to care identified in our study and others [62].”
We need another word for ‘chronic’
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Huet, V. (2026) · International Journal of Art Therapy · doi:10.1080/17454832.2025.2555308 · Cited by 1
“A qualitative systematic review by Toye et al. (2013) on patients’ experiences of their treatment, and a conceptual model for living with chronic pain were summarised.”
Taimeh, D., Ríordáin, R. N., Fedele, S., & Leeson, R. (2023) · Journal of Oral Pathology and Medicine · doi:10.1111/jop.13462 · Cited by 1
“Several qualitative systematic reviews of chronic pain conditions have mentioned in one way or another its significance as a major part of their lives 7,24 .”
Thompson, R., Fors, M., Kammerlind, A.-S. C., Tingström, P., Abbott, A. D., & Johansson, K. M. (2025) · PLoS ONE · doi:10.1371/journal.pone.0316806 · Cited by 1
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“A mega-ethnography by Toye et al. [9] about living with chronic nonmalignant pain served to develop an initial list of key concepts about living with pain, before adding findings from the other reviews [8,18,30–41].”
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“In fact, multiple reports highlight the struggle of chronic pain patients to validate their pain experience and to be believed 43–45 .”
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“…within our study are in keeping with existing research with participants describing such experiences as loss of self-identity, distress and fear [25, 26] and an adversarial experience of healthcare [44] with participants like Bethany and Tony feeling like they must “prove” their CMP, and…”
Okuhara, T., Okada, H., Yokota, R., & Kagawa, Y. (2026) · Frontiers in Communication · doi:10.3389/fcomm.2026.1819681 · Cited by 1
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Initial Validation of the Self Experiences Questionnaire-2 in People with Chronic Pain
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Experiences and impact of chronic pain in South Africans living in a rural area: a qualitative study
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“32 33 These geographical differences reinforce the need for local studies to understand the experience of pain.”
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Hvordan mestre smerter på en bedre måte
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Managing chronic pain in primary care
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Towards a shared understanding of chronic pain
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The indispensable relevance of qualitative research in day-to-day clinical practices
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Mellier, J., Aurélie, B., Defraine, F., Vanderhofstadt, Q., Biagi, L. D., Schetgen, M., D'Ans, P., Foucart, J., Mahieu, C., & Bengoetxea, A. (2024) · Health Expectations · doi:10.1111/hex.70129 · Cited by 3
“A systematic literature review on the experience of persons living with chronic nonmalignant pain highlighted an antagonistic struggle in relation to self, time, and others [20].”
Resentful, Resigned and Respectful: Opioid Analgesics, Pain and Control, a Qualitative Study
Cooper, R. J., Matheson, C., Pagan, E., & Radford, H. E. (2025) · Pharmacy · doi:10.3390/pharmacy13010025
“Similar themes and concerns have emerged in previous qualitative research involving opioid analgesic patients and GPs in England [12] and a meta-ethnography of pain patients [22].”
Stavropoulos, N., & Johnson, M. I. (2025) · Frontiers in Pain Research · doi:10.3389/fpain.2025.1672412
“Many people struggle to make sense of their pain when biomedical treatments fail, often finding it difficult to attribute any positive or meaningful interpretation to their suffering (36).”
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Additional file 1 of Lidocaine for postoperative pain after cardiac surgery: a systematic review
Boswell, M. R., Moman, R. N., Burtoft, M. A., Gerdes, H., Martinez, J. S., Gerberi, D. J., Wittwer, E. D., Murad, M. H., & Hooten, W. M. (2021) · Figshare · doi:10.6084/m9.figshare.14708050
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Løchting, I., Grotle, M., Storheim, K., Foldal, V. S., Standal, M. I., Fors, E. A., & Eik, H. (2021) · Figshare · doi:10.6084/m9.figshare.14433113
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Qualitative Evidence Synthesis
Booth, A., & Fryer, K. (2026) · Health informatics · doi:10.1007/978-3-032-11284-2_11
Taimeh, D., Ríordáin, R. N., Fedele, S., & Leeson, R. (2026) · Oral Surgery Oral Medicine Oral Pathology and Oral Radiology · doi:10.1016/j.oooo.2026.01.007
Moro, C., Spicer, S. G., & Hobson-Merrett, C. (2026) · Journal of Health Psychology · doi:10.1177/13591053261436533
“These encounters reflect prior research on disbelief and the need to “prove legitimacy” in CP (Nicola et al., 2021; Toye et al., 2013; Kool et al., 2009), but this study situates them within structural power and socioeconomic marginali-sation.”
Porcuna, V. A., Rodríguez-Martín, B., & Avello, D. (2026) · Nursing and Health Sciences · doi:10.1111/nhs.70348
“…methodological quality was not used as an inclusion or exclusion criterion but rather with the final aim of determining whether the selected studies provided an adequate description of the concepts they included and whether they were methodologically sound (Campbell et al. 2011; Toye et al. 2013).”
Ahmed, T. K. I., Hadyanto, R., Medahunsi, S., & Sofat, N. (2026) · Therapeutic Advances in Musculoskeletal Disease · doi:10.1177/1759720x261447164
“26,27 It is widely accepted that drivers of pain chronicity include factors such as age, genetics, high body mass index, sleep disturbance, fear avoidance, catastrophising, job dissatisfaction and financial difficulties.”
Sharma, K., & Friedman, J. (2026) · Plastic & Reconstructive Surgery Global Open · doi:10.1097/gox.0000000000008017
Palahí-Calsina, I., Jubany, J., Espelt, A., Viladomat-Sallés, J., Bettagnier, S., & Borao, O. (2026) · Clinical Rehabilitation · doi:10.1177/02692155261485354
Okuhara, T., Okada, H., Yokota, R., & Kagawa, Y. (2026) · PEC Innovation · doi:10.1016/j.pecinn.2026.100503
“People with MUEP mobilize diverse interactional practices in clinical settings to secure legitimacy and maintain access to treatment and reasonable accommodation [5,6,8,9].”
Szeremeta, Y. C. (2026) · Medical Hypotheses · doi:10.1016/j.mehy.2026.112223
What young adults with persistent musculoskeletal pain need from generative AI between visitsPreprint
Pang, J., Li, Z., Xu, C., & Ge, C. (2026) · Research Square · doi:10.21203/rs.3.rs-11494498/v1
Seçinti, E., Klooster, B., Robinson, R. L., Bernstein, M. C., Tallarico, M., Chatterton, K., Voci, A., Olonilua, D., Linton, S. R., Litcher‐Kelly, L., et al. (2026) · Musculoskeletal Care · doi:10.1002/msc.70281
“Several reviews focussing on the patient experience of CLBP have been published (Toye et al. 2013).”
Metadata
- Authors
- Toye, F., Seers, K., Allcock, N., Briggs, M., Carr, E., Andrews, J., & Barker, K.
- Affiliations
- University of Warwick (GB)
- Glasgow Caledonian University (GB)
- Leeds Beckett University (GB)
- University of Calgary (CA)
- Nuffield Orthopaedic Centre (GB)
- Venue
- British Journal of General Practice
- Published
- 2013-12
- Volume
- 63
- Issue
- 617
- Pages
- e829-e841
- ISSN
- 0960-1643 (ISSN-L)
- 1478-5242
- PMC
- PMC3839392
- OpenAlex
- W2091768352
- Cited by
- 156
- References
- 119
- Citations by year
- 2026: 13 · 2025: 19 · 2024: 14 · 2023: 18 · 2022: 18 · 2021: 18 · 2020: 10 · 2019: 6 · 2018: 6 · 2017: 12 · 2016: 13 · 2015: 4 · 2014: 5
- FWCI
- 0.93
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- British Journal of General Practice (publishedVersion)
- PubMed Central (publishedVersion)
- PubMed (publishedVersion)
- Research Explorer (The University of Manchester) (submittedVersion)
- ResearchOnline (submittedVersion)
- Funders
- National Institute for Health and Care Research (09/2001/09, PDA/01/05/010)
- Topics
- Health Sciences › Health Professions › Physical Therapy, Sports Therapy and Rehabilitation › Musculoskeletal pain and rehabilitation
- Social Sciences › Arts and Humanities › History and Philosophy of Science › Medicine, History, and Philosophy
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Pediatric Pain Management Techniques
- Keywords
- patient experience, self-affirmation, pain coping, legitimacy, patient-provider partnership, conceptual model, primary care
- MeSH terms
- Adaptation, Psychological, Adolescent, Adult, Aged, Aged, 80 and over, Humans, Interpersonal Relations, Middle Aged, Patient Acceptance of Health Care, Self Concept, Stress, Psychological, Qualitative Research, Young Adult, Chronic Pain, Musculoskeletal Pain
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