- Email: [email protected]
The question of quality of life in fibromyalgia patients
Journal of Psychosomatic Research 57 (2004) 501 – 502
Correspondence
The question of quality of life in fibromyalgia patientsB Fibromyalgia poses some intriguing questions to researchers and attending clinicians that remain unanswered by today’s literature and which still provoke debate: Does it really exist as a clinical individualized entity? Is it a disease or a syndrome? Does fibromyalgia’s pathophysiology reflect a pain processing dysfunction? Does the label bfibromyalgiaQ help or cause more harm to patients? Although research is essential to answer such questions, conclusions driven from the obtained data have to be discussed taking into account the physician’s experience with each individual patient. In my view, fibromyalgia is an individualized syndrome with important psychological, familial and social impact. Its recognition as a diagnosis brings more benefits than harm to most patients. Upon receiving this diagnosis, patients proceed to look for treatment and start helping themselves through positive coping strategies learned through health education resources. Anxiety derived from not knowing the cause of one’s symptoms is otherwise quite an aggravating factor of the syndrome. Besides this theoretical dilemma, fibromyalgia poses challenges that have been overcome in other rheumatic diseases namely, the diagnosis, follow-up and treatment [1,2]. Because it does not have any biological phenomenon to be objectively measured in everyday practice, the solution is to quantify symptoms and the syndrome’s impact on quality of life. It could be included in diagnosis, the identification of patient subgroups of worse severity and prognosis. Therefore, measuring fibromyalgia’s impact on quality of life could be a useful tool to be used as an outcome measure [3– 6]. In order to state the feasibility of this method, it is first necessary to establish if fibromyalgia really causes a negative impact on quality of life. Several articles have been published in prestigious medical journals dealing with this subject and using different questionnaires. All studies show that fibromyalgia’s impact on quality of life is global and important [2,7–9]. Our research group published two of these studies [7,8]: The first one compared fibromyalgia’s impact with that of
rheumatoid arthritis. It included questionnaires about health status, functional capacity, sleep disturbances, economic aspects, helplessness and sexuality. It was concluded that the impact of fibromyalgia is similar to the impact of rheumatoid arthritis, except for functional capacity, which had worse scores compared with the latter [7]. The second article compared fibromyalgia’s impact on quality of life with that of normal controls using The Medical Outcome Study 36 Short-Form Survey (SF36). Statistical difference in favor of the normal group was shown on all scales evaluated [8]. After establishing this impact, quality-of-life measures were included in studies of prognosis and therapeutic intervention. Three of these studies, along with a period evaluation (6 to 8 years) showed these same conclusions [4 – 6]: (1) (2)
This improvement was attributed to the coping strategies developed by the patients or the reduction of anxiety derived for a better understanding of their condition [2]. The treatment of fibromyalgia patients to improve quality of life includes, besides alleviating the symptoms, the discussion of aspects that could be used as tools in patient orientation through individual consultation or through techniques of health education. Among these aspects, it is important to define factors that can influence the magnitude of the negative impact on one’s quality of life. The literature has quite a few studies dealing with this subject, and we can rule the following cited factors [2,9]: (1) (2) (3) (4) (5) (6)
B
No financial support.
0022-3999/04/$ – see front matter D 2004 Elsevier Inc. All rights reserved. doi:10.1016/j.jpsychores.2004.08.003
Symptoms stayed stable during the whole study period, with little tendency to improvement; There was significant improvement on the quality of life parameters.
severity of anxiety and/or depression; the development of positive coping strategies; daily fluctuation of symptom severity; confidence in health professionals and their advice; understanding of their condition by relatives and friends; maintenance of their productive activities and execution of plans for the future.
502
Correspondence / Journal of Psychosomatic Research 57 (2004) 501 – 502
There are many unanswered questions about this syndrome. One could say that we do not fully know what fibromyalgia really is (syndrome or disease), or even that little is known about its disease mechanisms. What is truly known is that there is tremendous suffering being experienced by these patients. Doctors need not question if what is known is enough, but instead, use this little part of knowledge to face the challenge of improving patients’ quality of life through several methods of intervention. This is only possible beginning with the recognition of the syndrome’s existence and understanding the magnitude of the problem.
References [1] Alarcon GS, Bradley MD. Advances in the treatment of fibromyalgia: current status and future directions. Am J Med Sci 1998;315:397 – 404. [2] Bernard AL, Prince A, Esall P. Quality of life issues for fibromyalgia patients. Arthritis Care Res 2000;13:42 – 50. [3] Hawley DJ, Wolfe F, Cathey MA. Pain, functional ability and psychological status: a 12-month study of severity in fibromyalgia. J Rheumatol 1988;15:1551 – 6.
[4] Mengshoe AM, Haugen M. Health status in fibromyalgia —a follow-up study. J Rheumatol 2001;28:2085 – 9. [5] Baumgartner E, Finckh A, Cedraschi C, Vischer TL. A six year prospective study of a cohort of patients with fibromyalgia. Ann Rheum Dis 2002;61:644. [6] Noller V, Sprott H. Prospective epidemiological observations on the course of the disease in fibromyalgia patients. J Negat Results Biomed 2003;23:4. [7] Martinez JE, Ferraz MB, Sato EI, Atra E. Fibromyalgia vs rheumatoid arthritis: a longitudinal comparison of quality of life. J Rheumatol 1995;22:201 – 4. [8] Martinez JE, Barauna Filho IS, Kubokawa K, Cevasco G, Pedreira IS, Machado LAM. Evaluation of the quality of life in Brazilian women with fibromyalgia through the bMedical Outcome Survey 36 Item Short Form StudyQ. Disabil Rehabil 2001;23:64 – 8. [9] So¨derberg S, Lundman B, Norberg A. Living with fibromyalgia: sense of coherence, perception of well-being and stress in daily life. Res Nurs Health 1997;20:495 – 503.
Jose´ Eduardo Martinez Medical School of Sorocaba Pontific Catholic University of Sa˜o Paulo Rua Riachuelo, 460 sala 103 Sorocaba, Sa˜o Paulo 18035-330, Brazil Tel./fax: +55 15 3224 5603 E-mail address: [email protected]
Correspondence
The question of quality of life in fibromyalgia patientsB Fibromyalgia poses some intriguing questions to researchers and attending clinicians that remain unanswered by today’s literature and which still provoke debate: Does it really exist as a clinical individualized entity? Is it a disease or a syndrome? Does fibromyalgia’s pathophysiology reflect a pain processing dysfunction? Does the label bfibromyalgiaQ help or cause more harm to patients? Although research is essential to answer such questions, conclusions driven from the obtained data have to be discussed taking into account the physician’s experience with each individual patient. In my view, fibromyalgia is an individualized syndrome with important psychological, familial and social impact. Its recognition as a diagnosis brings more benefits than harm to most patients. Upon receiving this diagnosis, patients proceed to look for treatment and start helping themselves through positive coping strategies learned through health education resources. Anxiety derived from not knowing the cause of one’s symptoms is otherwise quite an aggravating factor of the syndrome. Besides this theoretical dilemma, fibromyalgia poses challenges that have been overcome in other rheumatic diseases namely, the diagnosis, follow-up and treatment [1,2]. Because it does not have any biological phenomenon to be objectively measured in everyday practice, the solution is to quantify symptoms and the syndrome’s impact on quality of life. It could be included in diagnosis, the identification of patient subgroups of worse severity and prognosis. Therefore, measuring fibromyalgia’s impact on quality of life could be a useful tool to be used as an outcome measure [3– 6]. In order to state the feasibility of this method, it is first necessary to establish if fibromyalgia really causes a negative impact on quality of life. Several articles have been published in prestigious medical journals dealing with this subject and using different questionnaires. All studies show that fibromyalgia’s impact on quality of life is global and important [2,7–9]. Our research group published two of these studies [7,8]: The first one compared fibromyalgia’s impact with that of
rheumatoid arthritis. It included questionnaires about health status, functional capacity, sleep disturbances, economic aspects, helplessness and sexuality. It was concluded that the impact of fibromyalgia is similar to the impact of rheumatoid arthritis, except for functional capacity, which had worse scores compared with the latter [7]. The second article compared fibromyalgia’s impact on quality of life with that of normal controls using The Medical Outcome Study 36 Short-Form Survey (SF36). Statistical difference in favor of the normal group was shown on all scales evaluated [8]. After establishing this impact, quality-of-life measures were included in studies of prognosis and therapeutic intervention. Three of these studies, along with a period evaluation (6 to 8 years) showed these same conclusions [4 – 6]: (1) (2)
This improvement was attributed to the coping strategies developed by the patients or the reduction of anxiety derived for a better understanding of their condition [2]. The treatment of fibromyalgia patients to improve quality of life includes, besides alleviating the symptoms, the discussion of aspects that could be used as tools in patient orientation through individual consultation or through techniques of health education. Among these aspects, it is important to define factors that can influence the magnitude of the negative impact on one’s quality of life. The literature has quite a few studies dealing with this subject, and we can rule the following cited factors [2,9]: (1) (2) (3) (4) (5) (6)
B
No financial support.
0022-3999/04/$ – see front matter D 2004 Elsevier Inc. All rights reserved. doi:10.1016/j.jpsychores.2004.08.003
Symptoms stayed stable during the whole study period, with little tendency to improvement; There was significant improvement on the quality of life parameters.
severity of anxiety and/or depression; the development of positive coping strategies; daily fluctuation of symptom severity; confidence in health professionals and their advice; understanding of their condition by relatives and friends; maintenance of their productive activities and execution of plans for the future.
502
Correspondence / Journal of Psychosomatic Research 57 (2004) 501 – 502
There are many unanswered questions about this syndrome. One could say that we do not fully know what fibromyalgia really is (syndrome or disease), or even that little is known about its disease mechanisms. What is truly known is that there is tremendous suffering being experienced by these patients. Doctors need not question if what is known is enough, but instead, use this little part of knowledge to face the challenge of improving patients’ quality of life through several methods of intervention. This is only possible beginning with the recognition of the syndrome’s existence and understanding the magnitude of the problem.
References [1] Alarcon GS, Bradley MD. Advances in the treatment of fibromyalgia: current status and future directions. Am J Med Sci 1998;315:397 – 404. [2] Bernard AL, Prince A, Esall P. Quality of life issues for fibromyalgia patients. Arthritis Care Res 2000;13:42 – 50. [3] Hawley DJ, Wolfe F, Cathey MA. Pain, functional ability and psychological status: a 12-month study of severity in fibromyalgia. J Rheumatol 1988;15:1551 – 6.
[4] Mengshoe AM, Haugen M. Health status in fibromyalgia —a follow-up study. J Rheumatol 2001;28:2085 – 9. [5] Baumgartner E, Finckh A, Cedraschi C, Vischer TL. A six year prospective study of a cohort of patients with fibromyalgia. Ann Rheum Dis 2002;61:644. [6] Noller V, Sprott H. Prospective epidemiological observations on the course of the disease in fibromyalgia patients. J Negat Results Biomed 2003;23:4. [7] Martinez JE, Ferraz MB, Sato EI, Atra E. Fibromyalgia vs rheumatoid arthritis: a longitudinal comparison of quality of life. J Rheumatol 1995;22:201 – 4. [8] Martinez JE, Barauna Filho IS, Kubokawa K, Cevasco G, Pedreira IS, Machado LAM. Evaluation of the quality of life in Brazilian women with fibromyalgia through the bMedical Outcome Survey 36 Item Short Form StudyQ. Disabil Rehabil 2001;23:64 – 8. [9] So¨derberg S, Lundman B, Norberg A. Living with fibromyalgia: sense of coherence, perception of well-being and stress in daily life. Res Nurs Health 1997;20:495 – 503.
Jose´ Eduardo Martinez Medical School of Sorocaba Pontific Catholic University of Sa˜o Paulo Rua Riachuelo, 460 sala 103 Sorocaba, Sa˜o Paulo 18035-330, Brazil Tel./fax: +55 15 3224 5603 E-mail address: [email protected]