A Meta-Synthesis of the Experience of Chronic Temporomandibular Disorder Patients Within Health Care Services

Aims: To systematically review the qualitative evidence related to experiences of patients with temporomandibular disorders (TMD) and to explore their journeys within health care services. Methods: A systematic search of the following databases was conducted: MEDLINE, Embase, PsycINFO, Web of Science, CINAHL Complete, and the Cochrane database. Thematic synthesis was used to analyze and synthesize the data from qualitative studies that explored the journeys of TMD patients within health care services. The Critical Appraisal Skills Programme (CASP) tool was used to critically appraise the quality of the included studies. Results: The search strategies yielded 4,563 articles across all databases, and 18 articles were eventually included. Six themes were derived: care-seeking attitudes; expectations and health care experience; the patient-clinician interaction; diagnosis as a stepping stone for improvement; management; and social support. Conclusion: The journey within health care services may play a valuable role in the ability to cope with chronic TMDs. Receiving a diagnosis, being listened to, and being believed are among the most important elements making for a positive clinical experience.

chronic pain; health care services; patient experience; qualitative evidence synthesis; temporomandibular disorders

1. de Leeuw R, Klasser G (eds). Orofacial Pain: Guidelines for Assessment, Diagnosis, and Management, ed 6. Chicago: Quintessence, 2018.

2. Durham J, Aggarwal V, Davies SJ, et al. Tempromandibular disorders (TMDs): An update and management guidance for primary care from the UK Specialist Interest Group in Orofacial Pain and TMDs (USOT). London: Royal College of Surgeons of England, 2013.

3. Linaker C, Harris EC, Cooper C, Coggon D, Palmer KT. The burden of sickness absence from musculoskeletal causes in Great Britain. Occup Med (Lond) Oct 2011;61:458–464.

4. de Vries HJ, Brouwer S, Groothoff JW, Geertzen JH, Reneman MF. Staying at work with chronic nonspecific musculoskeletal pain: A qualitative study of workers’ experiences. BMC Musculoskelet Disord 2011;12:126.

5. White BA, Williams LA, Leben JR. Health care utilization and cost among health maintenance organization members with temporomandibular disorders. J Orofac Pain 2001;15:158–169.

6. Campbell C, Guy A. ‘Why can’t they do anything for a simple back problem?’ A qualitative examination of expectations for low back pain treatment and outcome. J Health Psychol 2007;12:641–652.

7. Bergman AA, Matthias MS, Coffing JM, Krebs EE. Contrasting tensions between patients and PCPs in chronic pain management: A qualitative study. Pain Med 2013;14:1689–1697.

8. Breckons M, Bissett SM, Exley C, Araujo-Soares V, Durham J. Care pathways in persistent orofacial pain: Qualitative evidence from the DEEP study. JDR Clin Trans Res 2017;2:48–57.

9. Durham J, Steele J, Moufti MA, Wassell R, Robinson P, Exley C. Temporomandibular disorder patients’ journey through care. Community Dent Oral Epidemiol 2011;39:532–541.

10. Fulford KWM, Ersser S, Hope T. Essential Practice in Patient-Centred [sic] Care. Wiley-Blackwell, 1995.

11. Lutz BJ, Bowers BJ. Patient-centered care: Understanding its interpretation and implementation in health care. Sch Inq Nurs Pract 2000;14:165–183; discussion 183–187.

12. World Health Organization. WHO global strategy on people-centred [sic] and integrated health services: Interim report. WHO, 2015. Accessed 6 February 2023. https://apps.who.int/iris/handle/10665/155002

13. Lo Scalzo A, Donatini A, Orzella L, Cicchetti A, Profili S, Maresso A. Health Systems in Transition. Italy. Health system review. European Observatory on Health Systems and Policies, 2009.

14. Kroneman M, Boerma W, van den Berg M, Groenewegen P, de Jong J, van Ginneken E. Netherlands: Health system review. Health Syst Transit 2016;18:1–240.

15. National Health Service Department of Health and Social Care. NHS Patient Experience Framework. 22 February 2012. Accessed 6 February 2023. https://www.gov.uk/government/publications/nhs-patient-experience-framework

16. Seers K. Qualitative systematic reviews: Their importance for our understanding of research relevant to pain. Br J Pain 2015;9:36–40.

17. Booth A. Clear and present questions: Formulating questions for evidence based practice. Library Hi Tech 2006;24:355–368.

18. Noyes J, Booth A, Flemming K, et al. Cochrane Qualitative and Implementation Methods Group guidance series-paper 3: Methods for assessing methodological limitations, data ex-traction and synthesis, and confidence in synthesized qualita-tive findings. J Clin Epidemiol 2018;97:49–58.

19. Long HA, French DP, Brooks JM. Optimising the value of the critical appraisal skills programme (CASP) tool for quality appraisal in qualitative evidence synthesis. Res Method Med Health Sci 2020;1:31–42.

20. Robertshaw L, Dhesi S, Jones LL. Challenges and facilitators for health professionals providing primary healthcare for refugees and asylum seekers in high-income countries: A system-atic review and thematic synthesis of qualitative research. BMJ Open 2017;7:e015981.

21. Thomas J, Harden A. Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Med Res Methodol 2008;8:45.

22. Lewin S, Booth A, Glenton C, et al. Applying GRADE-CERQual to qualitative evidence synthesis findings: introduction to the series. Implement Sci 2018;13(suppl 1):2.

23. Tong A, Flemming K, McInnes E, Oliver S, Craig J. Enhancing transparency in reporting the synthesis of qualitative research: ENTREQ. BMC Med Res Methodol 2012;12:181.

24. Bonathan CJ, Zakrzewska JM, Love J, Williams AC. Beliefs and distress about orofacial pain: Patient journey through a specialist pain consultation. J Oral Facial Pain Headache 2014;28:223–232.

25. Au TS, Wong MC, McMillan AS, Bridges S, McGrath C. Treatment seeking behaviour in southern Chinese elders with chronic orofacial pain: A qualitative study. BMC Oral Health 2014;14:8.

26. Rollman A, Gorter RC, Visscher CM, Naeije M. Why seek treatment for temporomandibular disorder pain complaints?A study based on semi-structured interviews. J Orofac Pain 2013;27:227–234.

27. Ilgunas A, Wänman A, Strömbäck M. ‘I was cracking more than everyone else’: Young adults’ daily life experiences of hypermobility and jaw disorders. Eur J Oral Sci 2020;128:74–80.

28. Fjellman-Wiklund A, Näsström A, Wänman A, Lövgren A. Patients’ perceived treatment need owing to temporomandibular disorders and perceptions of related treatment in dentistry-a mixed-method study. J Oral Rehabil 2019;46:792–799.

29. Hazaveh M, Hovey R. Patient experience of living with orofacial pain: An interpretive phenomenological study. JDR Clin Trans Res 2018;3:264–271.

30. Garro LC. Narrative representations of chronic illness experience: Cultural models of illness, mind, and body in stories concerning the temporomandibular joint (TMJ). Soc Sci Med 1994;38:775–788.

31. Nilsson IM, Willman A. Treatment seeking and self-constructed explanations of pain and pain management strategies among adolescents with temporomandibular disorder pain. J Oral Facial Pain Headache 2016;30:127–133.

32. Eaves ER, Nichter M, Ritenbaugh C, Sutherland E, Dworkin SF. Works of illness and the challenges of social risk and the specter of pain in the lived experience of TMD. Med Anthropol Q 2015;29:157–177.

33. Durham J, Steele JG, Wassell RW, Exley C. Living with uncertainty: Temporomandibular disorders. J Dent Res 2010;89:827–830.

34. Peters S, Goldthorpe J, McElroy C, et al. Managing chronic orofacial pain: A qualitative study of patients’, doctors’, and dentists’ experiences. Br J Health Psychol 2015;20:777–791.

35. Mienna CS, Johansson EE, Wänman A. “Grin(d) and bear it”: Narratives from Sami women with and without temporomandibular disorders. A qualitative study. J Oral Facial Pain Headache 2014;28:243–251.

36. Wolf E, Birgerstam P, Nilner M, Petersson K. Nonspecific chronic orofacial pain: studying patient experiences and perspectives with a qualitative approach. J Orofac Pain 2008;22:349–358.

37. Wolf E, Birgerstam P, Nilner M, Petersson K. Patients’ experiences of consultations for nonspecific chronic orofacial pain: A phenomenological study. J Orofac Pain 2006;20:226–233.

38. Garro LC, Stephenson KA, Good BJ. Chronic illness of the temporomandibular joints as experienced by support-group members. J Gen Intern Med 1994;9:372–378.

39. Dinsdale A, Forbes R, Thomas L, Treleaven J. The management experiences, needs and preferences of individuals seeking care for persistent intra-articular temporomandibular disorders: A qualitative study. J Oral Rehabil 2022;49:10–21.

40. Williams V, Boylan AM, Nunan D. Critical appraisal of qualitative research: necessity, partialities and the issue of bias. BMJ Evid Based Med 2020;25:9–11.

41. Smith JK. The problem of criteria for judging interpretive inquiry. Educ Eval Policy Analysis 1984;6:379–391.

42. Morse JM. Critical Issues in Qualitative Research Methods. Sage, 1994.

43. Morse JM, Barrett M, Mayan M, Olson K, Spiers J. Verification strategies for establishing reliability and validity in qualitative research. Int J Qual Methods 2002;1:13–22.

44. Noyes J, Booth A, Cargo M, et al. Chapter 21: Qualitative evidence. In: Higgins JPT, Thomas J, Chandler J, et al (eds). Cochrane Handbook for Systematic Reviews of Interventions version 6.3. Updated February 2022. Cochrane, 2022.

45. Carroll C, Booth A, Leaviss J, Rick J. “Best fit” framework synthesis: Refining the method. BMC Med Res Methodol 2013;13:37.

46. Dodgson JE. Reflexivity in qualitative research. J Hum Lact 2019;35:220–222.

47. Toye F, Seers K, Barker KL. Living life precariously with rheumatoid arthritis - a mega-ethnography of nine qualitative evidence syntheses. BMC Rheumatol 2019;3:5.

48. Primdahl J, Hegelund A, Lorenzen AG, Loeppenthin K, Dures E, Appel Esbensen B. The experience of people with rheuma-toid arthritis living with fatigue: A qualitative metasynthesis. BMJ Open 2019;9:e024338.

49. Toye F, Seers K, Allcock N, et al. Patients’ experiences of chronic non-malignant musculoskeletal pain: A qualitative systematic review. Br J Gen Pract 2013;63:e829–e841.

50. Toye F, Seers K, Allcock N, et al. A meta-ethnography of patients’ experience of chronic non-malignant musculoskeletal pain. NIHR Journals Library 2013.

51. Froud R, Patterson S, Eldridge S, et al. A systematic review and meta-synthesis of the impact of low back pain on people’s lives. BMC Musculoskelet Disord 2014;15:50.

52. Doyle C, Lennox L, Bell D. A systematic review of evidence on the links between patient experience and clinical safety and effectiveness. BMJ Open 2013;3:e001570.

53. Toye F, Seers K, Hannink E, Barker K. A mega-ethnography of eleven qualitative evidence syntheses exploring the experience of living with chronic non-malignant pain. BMC Med Res Methodol 2017;17:116.

54. Toye F, Seers K, Barker K. A meta-ethnography of patients’ experiences of chronic pelvic pain: Struggling to construct chronic pelvic pain as ‘real’. J Adv Nurs 2014;70:2713–2727.

55. Fu Y, McNichol E, Marczewski K, Closs SJ. Patient-professional partnerships and chronic back pain self-management: A qualitative systematic review and synthesis. Health Soc Care Community 2016;24:247–259.

56. Durham J, Exley C, Wassell R, Steele JG. ‘Management is a black art’–professional ideologies with respect to temporo-mandibular disorders. Br Dent J 2007;202:e29; discussion 682–683.

57. Aggarwal VR, Joughin A, Zakrzewska J, Appelbe P, Tickle M. Dentists’ preferences for diagnosis, management and referral of chronic orofacial pain: Results from a national survey. Health Educ J 2012;71:662–669.

58. Improving TMD health care: Practice, education, access, and coverage. In: Yost O, Liverman CT, English R, et al (eds). Temporomandibular Disorders: Priorities for Research and Care. National Academies Press, 2020.

59. Ernstzen D, Stander J, Nkhata LA. Back pain education. International Association for the Study of Pain. 9 July 2021. Accessed 13 February 2023. https://www.iasp-pain.org/resources/fact-sheets/back-pain-education/

60. O’Keeffe M, Maher CG, Stanton TR, et al. Mass media campaigns are needed to counter misconceptions about back pain and promote higher value care. Br J Sports Med 2019;53:1261–1262.

61. Sharma S, Traeger AC, Reed B, et al. Clinician and patient be-liefs about diagnostic imaging for low back pain: A systematic qualitative evidence synthesis. BMJ Open 2020;10:e037820.

62. Linton SJ, Boersma K, Jansson M, Svärd L, Botvalde M. The effects of cognitive-behavioral and physical therapy preventive interventions on pain-related sick leave: A randomized controlled trial. Clin J Pain 2005;21:109–119.

63. Jones T, Lookatch S, Moore T. Effects of a single session group intervention for pain management in chronic pain patients: A pilot study. Pain Ther 2013;2:57–64 [erratum 2013;2:135].

64. Kullgren JT, McLaughlin CG, Mitra N, Armstrong K. Nonfinancial barriers and access to care for U.S. adults. Health Serv Res 2012;47:462–485.

65. Douthit N, Kiv S, Dwolatzky T, Biswas S. Exposing some important barriers to health care access in the rural USA. Public Health 2015;129:611–620.

66. Reuter KE, Geysimonyan A, Molina G, Reuter PR. Healthcare in Equatorial Guinea, West Africa: Obstacles and barriers to care. Pan Afr Med J 2014;19:369.

67. Garcia-Subirats I, Vargas I, Mogollón-Pérez AS, et al. Barriers in access to healthcare in countries with different health systems. A cross-sectional study in municipalities of central Colombia and north-eastern Brazil. Soc Sci Med 2014;106:204–213.

68. Thorne S, Jensen L, Kearney MH, Noblit G, Sandelowski M. Qualitative metasynthesis: Reflections on methodological orientation and ideological agenda. Qual Health Res 2004;14:1342–1365.

69. Britten N, Campbell R, Pope C, Donovan J, Morgan M, Pill R. Using meta ethnography to synthesise qualitative research: A worked example. J Health Serv Res Policy 2002;7:209–215.