The fibromyalgia syndrome (FMS) disconnect – provisions FMS patients need from their healthcare versus what they actually receive: a rehabilitation scientist’s perspective

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Published: Nov 19, 2012
DOI: https://doi.org/10.5750/ijpcm.v2i4.289
Keywords:
Fibromyalgia syndrome functional limitations healthcare provisions patient advocacy patient experiences person-centered care provider empathy

Main Article Content

Nicole Marlow
Medical University of South Carolina

Abstract

The recently released Institute of Medicine report – Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research – calls for a “cultural transformation” in order “to better prevent, assess, treat and understand pain of all types”. Fibromyalgia syndrome (FMS) is a chronic widespread musculoskeletal pain disorder that affects 4-10 million Americans and 0.5-6% of the world population. It is the most common chronic pain condition seen by rheumatologists and general medicine providers and is reported much more frequently among women than men (75-90% of cases). The symptoms of FMS often contribute to increased disability and reduced health-related quality of life. The literature regarding the “patient experience” for these individuals highlights the substantial dissension between (and the consequent need for improvements pertaining to) their direct health needs and the actual provisions of their healthcare. The present paper addresses how healthcare providers, educators and/or researchers might address this disconnect as part of the efforts to increase the person-centeredness of clinical services.

Article Details

Issue
Vol. 2 No. 4 (2012)
Section
Regular Articles

References

Institute of Medicine. (2011) Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research. Washington, DC: Institute of Medicine.

National Institute of Arthritis and Musculoskeletal and Skin Diseases, Questions and Answers about Fibromyalgia.

Toda, K. (2007). The prevalence of fibromyalgia in Japanese workers. Scandinavian Journal of Rheumatology 36, 140-144.

Mas, A.J., Carmona, L., Valverde, M. & Ribas, B. (2008). Prevalence and impact of fibromyalgia on function and quality of life in individuals from the general population: results from a nationwide study in Spain. Clinical and Experimental Rheumatology 26, 519-526.

National Fibromyalgia Association. Fibromyalgia Prevalence.

WrongDiagnosis.Com. Prevalence and Incidence of Fibromyalgia.

Branco, J.C., Bannwarth, B., Failde, I., Abello Carbonell, J., Blotman, F., Spaeth, M., Saraiva, F., Nacci, F., Thomas, E., Caubère, J.P., LeLay, K., Taieb, C. & Matucci-Cerinic, M. (2010). Prevalence of fibromyalgia: a survey in five European countries. Seminars in Arthritis and Rheumatism 39, 448-453.

Bannwarth, B., Blotman, F., Roue-Le Lay, K., Caubère, J.P., Andre, E. & Taieb, C. (2009). Fibromyalgia syndrome in the general population of France: a prevalence study. Joint, bone, spine: revue du rhumatisme 76, 184-187.

Schochat, T. & Raspe, H. (2003). Elements of fibromyalgia in an open population. Rheumatology (Oxford) 42, 829-835.

Bazelmans, E., Vercoulen, J.H., Galama, J.M., van Weel, C., van der Meer, J. W. & Bleijenberg, G. (1997). Prevalence of chronic fatigue syndrome and primary fibromyalgia syndrome in The Netherlands. Nederlands Tijdschrift Voor Geneeskunde 141, 1520-1523.

Wolfe, F., Hawley, D.J. & Wilson, K. (1996). The prevalence and meaning of fatigue in rheumatic disease. The Journal of Rheumatology 23, 1407-1417.

Sardini, S., Ghirardini, M., Betelemme, L., Arpino, C., Fatti, F. & Zanini, F. (1996). Epidemiological study of a primary fibromyalgia in pediatric age. Minerva Pediatrica 48, 543-550.

Wolfe, F., Ross, K., Anderson, J., Russell, I. J. & Hebert, L. (1995). The prevalence and characteristics of fibromyalgia in the general population. Arthritis and Rheumatism 38, 19-28.

Buskila, D., Neumann, L., Hershman, E., Gedalia, A., Press, J. & Sukenik, S. (1995). Fibromyalgia syndrome in children--an outcome study. Journal of Rheumatology 22, 525-528.

Weir, P.T., Harlan, G.A., Nkoy, F.L., Jones, S.S., Hegmann, K.T., Gren, L.H. & Lyon, J.L. (2006). The incidence of fibromyalgia and its associated comorbidities: a population-based retrospective cohort study based on International Classification of Diseases, 9th Revision codes. Journal of Clinical Rheumatology: Practical Reports on Rheumatic & Musculoskeletal Diseases 12, 124-128.

Sim, J. & Madden, S. (2008). Illness experience in fibromyalgia syndrome: a metasynthesis of qualitative studies. Social Science & Medicine 67, 57-67.

Huisman, A.M., White, K.P., Algra, A., Harth, M., Vieth, R., Jacobs, J.W., Bijlsma, J. W. & Bell, D.A. (2001). Vitamin D levels in women with systemic lupus erythematosus and fibromyalgia. The Journal of Rheumatology 28, 2535-2539.

Wolfe, F., Hawley, D.J., Goldenberg, D.L., Russell, I.J., Buskila, D. & Neumann, L. (2000). The assessment of functional impairment in fibromyalgia (FM): Rasch analyses of 5 functional scales and the development of the FM Health Assessment Questionnaire. The Journal of Rheumatology 27, 1989-1999.

Al-Allaf, A.W. (2007). Work disability and health system utilization in patients with fibromyalgia syndrome. Journal of Clinical Rheumatology: Practical Reports on Rheumatic & Musculoskeletal Diseases 13, 199-201.

Robinson, R.L. & Jones, M.L. (2006). In search of pharmacoeconomic evaluations for fibromyalgia treatments: a review. Expert Opinion on Pharmacotherapy 7, 1027-1039.

Bennett, R.M., Jones, J., Turk, D.C., Russell, I.J. & Matallana, L. (2007). An internet survey of 2,596 people with fibromyalgia. BMC Musculoskeletal Disorders 8, 27.

Shaver, J.L., Wilbur, J., Robinson, F.P., Wang, E. & Buntin, M.S. (2006). Women's health issues with fibromyalgia syndrome. Journal of Women's Health 15, 1035-1045.

Rutledge, D.N., Jones, K. & Jones, C.J. (2007). Predicting high physical function in people with fibromyalgia. Journal of Nursing Scholarship 39, 319-324.

Berger, A., Dukes, E., Martin, S., Edelsberg, J. & Oster, G. (2007). Characteristics and healthcare costs of patients with fibromyalgia syndrome. International Journal of Clinical Practice 61, 1498-1508.

Panton, L.B., Kingsley, J.D., Toole, T., Cress, M.E., Abboud, G., Sirithienthad, P., Mathis, R. & McMillan, V. (2006). A comparison of physical functional performance and strength in women with fibromyalgia, age- and weight-matched controls, and older women who are healthy. Physical Therapy 86, 1479-1488.

Verbunt, J.A., Pernot, D.H. & Smeets, R.J. (2008). Disability and quality of life in patients with fibromyalgia. Health and Quality of Life Outcomes 6, 8.

Kurtze, N., Gundersen, K.T. & Svebak, S. (1999). Quality of life, functional disability and lifestyle among subgroups of fibromyalgia patients: the significance of anxiety and depression. British Journal of Medical Psychology 72 (4), 471-484.

Zhao, Y., Sun, P., Watson, P., Mitchell, B. & Swindle, R. (2011). Comparison of medication adherence and healthcare costs between duloxetine and pregabalin initiators among patients with fibromyalgia, Pain Practice 11, 204-216.

White, L.A., Birnbaum, H.G., Kaltenboeck, A., Tang, J., Mallett, D. & Robinson, R.L. (2008). Employees with fibromyalgia: medical comorbidity, healthcare costs, and work loss. Journal of Occupational and Environmental Medicine 50, 13-24.

Wolfe, F., Smythe, H.A., Yunus, M.B., Bennett, R.M., Bombardier, C., Goldenberg, D.L., Tugwell, P., Campbell, S.M., Abeles, M., Clark, P. et al. (1990). The American College of Rheumatology 1990 Criteria for the Classification of Fibromyalgia. Report of the Multicenter Criteria Committee. Arthritis and Rheumatism 33, 160-172.

Abeles, A.M., Pillinger, M.H., Solitar, B.M. & Abeles, M. (2007). Narrative review: the pathophysiology of fibromyalgia. Annals of Internal Medicine 146, 726-734.

Williams, D.A. & Gracely, R.H. (2006). Biology and therapy of fibromyalgia. Functional magnetic resonance imaging findings in fibromyalgia. Arthritis Research & Therapy 8, 224.

Liptan, G.L. (2010). Fascia: A missing link in our understanding of the pathology of fibromyalgia. Journal of Bodywork and Movement Therapies 14, 3-12.

Wolfe, F., Clauw, D.J., Fitzcharles, M.A., Goldenberg, D.L., Katz, R.S., Mease, P., Russell, A.S., Russell, I.J., Winfield, J.B. & Yunus, M.B. (2010). The American College of Rheumatology preliminary diagnostic criteria for fibromyalgia and measurement of symptom severity. Arthritis Care & Research 62, 600-610.

Mease, P. (2005). Fibromyalgia syndrome: review of clinical presentation, pathogenesis, outcome measures, and treatment. Journal of Rheumatology Supplement 75, 6-21.

Choy, E., Perrot, S., Leon, T., Kaplan, J., Petersel, D., Ginovker, A. & Kramer, E. (2010) A patient survey of the impact of fibromyalgia and the journey to diagnosis, BMC Health Services Research 10, 102.

Barker, K.K. (2005). The fibromyalgia story: Medical authority and women’s world of pain. Philadelphia: Temple University Press.

Hallberg, L.R. & Carlsson, S. G. (1998). Psychosocial vulnerability and maintaining forces related to fibromyalgia. In-depth interviews with twenty-two female patients. Scandinavian Journal of Caring Sciences 12, 95-103.

Henriksson, C.M. (1995). Living with continuous muscular pain--patient perspectives. Part I: Encounters and consequences. Scandinavian Journal of Caring Sciences 9, 67-76.

Sturge-Jacobs, M. (2002). The experience of living with fibromyalgia: confronting an invisible disability. Research and Theory for Nursing Practice 16, 19-31.

Hellstrom, O., Bullington, J., Karlsson, G., Lindqvist, P. & Mattsson, B. (1999). A phenomenological study of fibromyalgia. Patient perspectives. Scandinavian Journal of Primary Health Care 17, 11-16.

Schaefer, K.M. (1995). Struggling to maintain balance: a study of women living with fibromyalgia. Journal of Advanced Nursing 21, 95-102.

Soderberg, S., Lundman, B. & Norberg, A. (1999). Struggling for dignity: the meaning of women's experiences of living with fibromyalgia. Qualitative Health Research 9, 575-587.

Paulson, M., Danielson, E. & Soderberg, S. (2002). Struggling for a tolerable existence: the meaning of men's lived experiences of living with pain of fibromyalgia type. Qualitative Health Research 12, 238-249.

Paulson, M., Norberg, A. & Danielson, E. (2002). Men living with fibromyalgia-type pain: experiences as patients in the Swedish health care system. Journal of Advanced Nursing 40, 87-95.

Madden, S. & Sim, J. (2006). Creating meaning in fibromyalgia syndrome. Social Science & Medicine 63, 2962-2973.

Kelley, P. & Clifford, P. (1997). Coping with chronic pain: assessing narrative approaches. Social Work 42, 266-277.

Raymond, M.C. & Brown, J.B. (2000). Experience of fibromyalgia. Qualitative study. Canadian Family Physician (Médecin de Famille Canadien) 46, 1100-1106.

Soderberg, S. & Lundman, B. (2001). Transitions experienced by women with fibromyalgia. Health Care for Women International 22, 617-631.

Cunningham, M.M. & Jillings, C. (2006). Individuals' descriptions of living with fibromyalgia. Clinical Nursing Research 15, 258-273.

Mengshoel, A.M. & Heggen, K. (2004). Recovery from fibromyalgia - previous patients' own experiences. Disability and Rehabilitation 26, 46-53.

Thorne, S., McGuinness, L., Con, A., Cunningham, M. & Harris, S.R. (2004). Health care communication issues in fibromyalgia: an interpretive description. Physiotherapy Canada (Physiothérapie Canada) 56, 31-38.

Zhao, Y., Chen, S.Y., Wu, N., Fraser, K.A. & Boulanger, L. (2011). Medication adherence and healthcare costs among fibromyalgia patients treated with duloxetine. Pain Practice 11, 381-391.

Goldenberg, D.L., Burckhardt, C. & Crofford, L. (2004). Management of fibromyalgia syndrome. Journal of the American Medical Association 292, 2388-2395.

Carville, S.F., Arendt-Nielsen, S., Bliddal, H., Blotman, F., Branco, J.C., Buskila, D., Da Silva, J.A., Danneskiold-Samsoe, B., Dincer, F., Henriksson, C., Henriksson, K.G., Kosek, E., Longley, K., McCarthy, G.M., Perrot, S., Puszczewicz, M., Sarzi-Puttini, P., Silman, A., Spath, M. & Choy, E.H. (2008). EULAR evidence-based recommendations for the management of fibromyalgia syndrome. Annals of the Rheumatic Diseases 67, 536-541.

Guymer, E.K. & Littlejohn, G.O. (2002). Fibromyalgia. Diagnosis and management. Australasian Chiropractic & Osteopathy 10, 81-84.

Sumpton, J.E. & Moulin, D.E. (2008). Fibromyalgia: presentation and management with a focus on pharmacological treatment. Pain Research & Management 13, 477-483.

Buckhardt, C.S., Goldenberg, D.L., Crofford, L., et al. (2005) Guideline for Management of Fibromyalgia Syndrome Pain in Adults and Children, Glenview, IL: American Pain Society.

Hauser, W., Thieme, K. & Turk, D.C. (2010). Guidelines on the management of fibromyalgia syndrome - a systematic review. European Journal of Pain 14, 5-10.

Forseth, K.K. & Gran, J. T. (2002). Management of fibromyalgia: what are the best treatment choices? Drugs 62, 577-592.

Brosseau, L., Wells, G.A., Tugwell, P., Egan, M., Wilson, K.G., Dubouloz, C.J., Casimiro, L., Robinson, V.A., McGowan, J., Busch, A., Poitras, S., Moldofsky, H., Harth, M., Finestone, H.M., Nielson, W., Haines-Wangda, A., Russell-Doreleyers, M., Lambert, K., Marshall, A.D., Veilleux, L. & Ottawa Panel Members. (2008). Ottawa Panel evidence-based clinical practice guidelines for aerobic fitness exercises in the management of fibromyalgia: part 1. Physical Therapy, 88, 857-871.

Brosseau, L., Wells, G.A., Tugwell, P., Egan, M., Wilson, K.G., Dubouloz, C.J., Casimiro, L., Robinson, V.A., McGowan, J., Busch, A., Poitras, S., Moldofsky, H., Harth, M., Finestone, H.M., Nielson, W., Haines-Wangda, A., Russell-Doreleyers, M., Lambert, K., Marshall, A.D., Veilleux, L. & Ottawa Panel Members. (2008). Ottawa Panel evidence-based clinical practice guidelines for strengthening exercises in the management of fibromyalgia: part 2. Physical Therapy 88, 873-886.

Crofford, L.J. (2008). Pain management in fibromyalgia. Current Opinion In Rheumatology 20, 246-250.

Garcia-Campayo, J., Serrano-Blanco, A., Rodero, B., Magallon, R., Alda, M., Andres, E., Luciano, J.V. & del Hoyo, Y.L. (2009). Effectiveness of the psychological and pharmacological treatment of catastrophization in patients with fibromyalgia: a randomized controlled trial. Trials 10, 24.

Crofford, L.J., Rowbotham, M.C., Mease, P.J., Russell, I.J., Dworkin, R.H., Corbin, A.E., Young, J.P., Jr., LaMoreaux, L.K., Martin, S.A. & Sharma, U. (2005). Pregabalin for the treatment of fibromyalgia syndrome: results of a randomized, double-blind, placebo-controlled trial. Arthritis and Rheumatism 52, 1264-1273.

Calandre, E.P., Morillas-Arques, P., Rodriguez-Lopez, C.M., Rico-Villademoros, F. & Hidalgo, J. (2007). Pregabalin augmentation of quetiapine therapy in the treatment of fibromyalgia: an open-label, prospective trial. Pharmacopsychiatry 40, 68-71.

Crofford, L.J., Mease, P.J., Simpson, S.L., Young, J.P., Jr., Martin, S.A., Haig, G.M. & Sharma, U. (2008). Fibromyalgia relapse evaluation and efficacy for durability of meaningful relief (FREEDOM): a 6-month, double-blind, placebo-controlled trial with pregabalin. Pain, 136, 419-431.

Mease, P.J., Russell, I.J., Arnold, L.M., Florian, H., Young, J.P., Jr., Martin, S.A. & Sharma, U. (2008). A randomized, double-blind, placebo-controlled, phase III trial of pregabalin in the treatment of patients with fibromyalgia. Journal of Rheumatology 35, 502-514.

Russell, I.J., Mease, P.J., Smith, T.R., Kajdasz, D.K., Wohlreich, M.M., Detke, M.J., Walker, D.J., Chappell, A.S. & Arnold, L.M. (2008). Efficacy and safety of duloxetine for treatment of fibromyalgia in patients with or without major depressive disorder: Results from a 6-month, randomized, double-blind, placebo-controlled, fixed-dose trial. Pain 136, 432-444.

Arnold, L.M., Rosen, A., Pritchett, Y.L., D'Souza, D.N., Goldstein, D.J., Iyengar, S. & Wernicke, J.F. (2005). A randomized, double-blind, placebo-controlled trial of duloxetine in the treatment of women with fibromyalgia with or without major depressive disorder. Pain 119, 5-15.

Arnold, L.M., Lu, Y., Crofford, L.J., Wohlreich, M., Detke, M.J., Iyengar, S. & Goldstein, D.J. (2004). A double-blind, multicenter trial comparing duloxetine with placebo in the treatment of fibromyalgia patients with or without major depressive disorder. Arthritis and Rheumatism 50, 2974-2984.

Clauw, D.J., Mease, P., Palmer, R.H., Gendreau, R.M. & Wang, Y. (2008). Milnacipran for the treatment of fibromyalgia in adults: a 15-week, multicenter, randomized, double-blind, placebo-controlled, multiple-dose clinical trial. Clinical Therapeutics 30, 1988-2004.

Gendreau, R.M., Thorn, M.D., Gendreau, J.F., Kranzler, J.D., Ribeiro, S., Gracely, R.H., Williams, D.A., Mease, P.J., McLean, S.A. & Clauw, D.J. (2005). Efficacy of milnacipran in patients with fibromyalgia. Journal of Rheumatology 32, 1975-1985.

Vitton, O., Gendreau, M., Gendreau, J., Kranzler, J. & Rao, S.G. (2004). A double-blind placebo-controlled trial of milnacipran in the treatment of fibromyalgia. Human Psychopharmacology 19 (Supplement 1) S27-35.

Arnold, L.M., Clauw, D.J., Wohlreich, M.M., Wang, F., Ahl, J., Gaynor, P.J. & Chappell, A.S. (2009). Efficacy of duloxetine in patients with fibromyalgia: pooled analysis of 4 placebo-controlled clinical trials. Primary Care Companion to the Journal of Clinical Psychiatry 11, 237-244.

Hauser, W., Bernardy, K., Uceyler, N. & Sommer, C. (2009). Treatment of fibromyalgia syndrome with gabapentin and pregabalin--a meta-analysis of randomized controlled trials. Pain 145, 69-81.

Mease, P.J., Clauw, D.J., Gendreau, R.M., Rao, S.G., Kranzler, J., Chen, W. & Palmer, R.H. (2009). The efficacy and safety of milnacipran for treatment of fibromyalgia. a randomized, double-blind, placebo-controlled trial. Journal of Rheumatology 36, 398-409.

Hallberg, L.R. & Carlsson, S.G. (2000). Coping with fibromyalgia. A qualitative study. Scandinavian Journal of Caring Sciences 14, 29-36.

Soderberg, S. & Norberg, A. (1995). Metaphorical pain language among fibromyalgia patients. Scandinavian Journal of Caring Sciences 9, 55-59.

Aday, L.A., & Andersen, R. (1974). A framework for the study of access to medical care. Health Services Research 9, 208-220.

Andersen, R.M. (1995). Revisiting the behavioral model and access to medical care: does it matter? Journal of Health and Social Behavior 36, 1-10.

Tait, R.C. (2008). Empathy: necessary for effective pain management? Current Pain and Headache Reports 12, 108-112.