Fibromyalgia: Patient perception on their disease and health system. Qualitative research study

Escudero-Carretero, María José; García-Toyos, Noelia; Prieto-Rodríguez, María Ángeles; Pérez-Corral, Olivia; March-Cerdá, Joan Carles; López-Doblas, Manuela

doi:10.1016/S2173-5743(10)70005-8

Información del artículo

Estadísticas

Abstract

Objective

To know the experiences and expectations of persons with fibromyalgia towards the health system and its professionals.

Methods

Qualitative study with three focal groups. The first focal group included patients with fibromyalgia, 20 women and 1 man, receiving care in the public health system, with different assistance paths and progression. Informed Consent was required. Content analysis was done.

Results

Patients describe a difficult experience, with symptoms that may involve incapacity for daily activities. Until knowing their diagnosis, they feel a lack of understanding and also loneliness. They develop different coping strategies, as looking for information or association. From the health system they expect: attention and a fast diagnosis, accessibility to consultations, medical exams and therapies or an impulse for research. They want trained professionals, proactive attitudes, interest, empathy and information.

Discussion

Qualitative methods seem suitable for delving into patient experience. Health assistance must improve patients’ quality of life, facilitating their assistance process and offering companionship, interest, comprehension and support.

Keywords:

Fibromyalgia

Patient expectation

Patient satisfaction

Qualitative analysis

Quality of health care

Professional-patient relationship

Resumen

Objetivo

Conocer la experiencia y vivencia de personas con fibromialgia y sus expectativas sobre el sistema sanitario y sus profesionales.

Métodos

Diseño cualitativo a través de grupos focales. Se realizaron tres grupos, uno con pacientes que pertenecían a asociaciones de fibromialgia. Participaron 20 mujeres y 1 varón. Se incluyeron personas que recibían atención en el sistema sanitario público, con distintas trayectorias asistenciales y evolución. Se pidió consentimiento informado. Análisis de contenido.

Resultados

Describen una vivencia difícil con una sintomatología que puede ser incapacitante para las actividades cotidianas. Hasta que reciben el diagnóstico, perciben incomprensión y soledad. Desarrollan distintas estrategias de afrontamiento, como buscar información o asociarse. Esperan del sistema sanitario: atención y diagnósticos ágiles, acceso a consultas, pruebas que necesiten y terapias beneficiosas o impulso a la investigación. Quieren profesionales con formación para abordar la fibromialgia, una actitud proactiva, interés, empatía e información.

Discusión

La metodología cualitativa fue idónea para profundizar en la experiencia de pacientes. La atención sanitaria debe dirigirse a mejorar su calidad de vida facilitando su proceso asistencial y ofreciendo acompañamiento, interés, comprensión y apoyo.

Palabras clave:

Fibromialgia

Expectativas de pacientes

Satisfacción de pacientes

Análisis cualitativo

Calidad de la atención de salud

Relaciones profesional-paciente

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References

[1.]

A. Collado, J. Alijotas, P. Benito.

Consensus document on the diagnosis and treatment of fibromyalgia in Catalonia.

Med Clin (Barc), 118 (2002), pp. 745-749

[2.]

J. Andreu, J. Sanz.

Fibromyalgia and its diagnosis.

Rev Clin Esp, 205 (2005), pp. 333-336

Medline

[3.]

V. De Felipe, B. Castel Bernal, J. Vidal-Fuentes.

Scientific evidence of the psychological aspects in fibromyalgia. Possibilities of intervention.

Reumatol Clin, 2 (2006), pp. 38-43

[4.]

J. Ancochea Millet, R. Sedó Fortuny.

A reflection on fibromyalgia.

Aten Primaria, 29 (2002), pp. 562-564

Medline

[5.]

Consejería de Salud Junta de Andalucía. Fibromialgia: proceso asistencial integrado. Sevilla: Consejería de Salud Junta de Andalucía; 2005.

[6.]

J. Rivera, C. Alegre, M.B. Nishishinya.

Evidence in fibromyalgia treatment.

Reumatol Clin, 2 (2006), pp. 34-37

[7.]

J. Rotés Querol.

Fibromyalgia in 2002.

Rev Esp Reumatol, 32 (2005), pp. 77-81

[8.]

L.A. Merayo Alonso, F.J. Garcia Cano, L. Rodriguez, Franco A.

bibliometric approach to research in fibromyalgia.

Reumatol Clin, 3 (2007), pp. 55-62

http://dx.doi.org/10.1016/S1699-258X(07)73602-1 | Medline

[9.]

Documento de la SER sobre tratamiento de la Fibromialgia. Reumatismos. 2005; septiembre-octubre.

[10.]

M.C. Raymond, J.B. Brown.

Experience of fibromyalgia. Qualitative study.

Can Fam Physician, 46 (2000), pp. 1100-1106

Medline

[11.]

L. Carmona.

Systematic review: the diagnosis of fibromyalgia itself have any deleterious effect on prognosis?.

Reumatol Clin, 2 (2006), pp. 52-57

http://dx.doi.org/10.1016/S1699-258X(06)73022-4 | Medline

[12.]

E. Bosch Romero, N. Sáenz Moya, M. Valls Esteve, S. Viñolas Valer.

Study of quality of life of patients with fibromyalgia: impact of a health education program.

Aten Primaria, 30 (2002), pp. 16-21

Artículo | Medline

[13.]

A. Arillo, C. Vilches, M. Major.

Frequent users and difficult: how do you feel treated by their doctors?.

An Sist Sanit Navar, 29 (2006), pp. 47-58

Medline

[14.]

A. Klemet, W. Häuser, W. Brückl.

Principles of treatment, coordination of medical care and patient education in fibromyalgia syndrome and chronic widespread.

Shmerz, 22 (2008), pp. 283-294

[15.]

M. Martínez Lavin.

The doctor-patient relationship in the context of fibromyalgia. Tribulations and proposals.

Reumatol Clin, 3 (2007), pp. 53-54

http://dx.doi.org/10.1016/S1699-258X(07)73601-X | Medline

[16.]

J. Sim, S. Madden.

Illness experience in fibromyalgia syndrome: a metasynthesis of qualitative studies.

Soc Sci Med, 67 (2008), pp. 57-67

http://dx.doi.org/10.1016/j.socscimed.2008.03.003 | Medline

[17.]

S. Steihaug.

Women's strategies for handling chronic muscle pain: a qualitative study.

Scand J Prim Health Care, 25 (2007), pp. 44-48

http://dx.doi.org/10.1080/02813430601016944 | Medline

[18.]

P. Asbring, A.L. Närvänen.

Patient power and control: a study of women with uncertain illness trajectories.

Qual Health Res, 14 (2004), pp. 226-240

http://dx.doi.org/10.1177/1049732303260682 | Medline

[19.]

P. Asbring, A.L. Närvänen.

Women's experiences of stigma in relation to chronic fatigue syndrome and fibromyalgia.

Qual Health Res, 12 (2002), pp. 148-160

Medline

[20.]

A. Buzzaqui Echevarría, J. Selles Uris.

The discussion group. A tool for research in primary care.

Aten Prim Form Contin Med, 4 (1997), pp. 421-433

[21.]

M.M. Calvente Garcia, I. Mateo Rodriguez.

Focus groups as qualitative research technique in health: design and implementation.

Aten Primaria, 25 (2000), pp. 181-186

Medline

[22.]

F.J. Mercado, E. Alcántara Hernández, N. Flores Lara.

Medical care for chronic disease: reflections on the methodological procedures of a qualitative study.

Rev Esp Salud Pública, 76 (2002), pp. 461-471

Medline

[23.]

J. Kitzinger.

Qualitative research: introducing focus groups.

BMJ, 311 (1995), pp. 299-302

Medline

[24.]

V.A. Zeithaml, A. Parasuraman, L.L. Berri.

Total quality management services.

Ediciones Díaz de Santos, (1993),

[25.]

C. Calderón.

Quality criteria in Qualitative Health Research (ICS): notes for a necessary debate.

Rev Esp Salud Pública, 76 (2002), pp. 473-482

Medline

[26.]

M.C. Ubago Linares, I. Ruiz Pérez, M.J. Bermejo Perez.

Clinical and psychosocial characteristics of people with fibromyalgia. Impact of diagnosis on their activities.

Rev Esp Salud Pública, 79 (2005), pp. 683-695

Medline

[27.]

M. Junyent Priu, A. Benavides Ruiz, M. Muñoz Borrell.

Fibromyalgia: a challenge for primary care.

Semergen, 31 (2005), pp. 255-258

[28.]

D.L. Goldenberg.

Treatment of fibromyalgia syndrome.

Rheum Dis Clin N Am, 15 (1998), pp. 61-71

[29.]

A. Suess, J.C. March Cerdá, M.A. Rodríguez Prieto.

The care process of cancer: needs and expectations.

Oncology (Barc), 29 (2006), pp. 357-367

[30.]

E. Gil Garcia, M. Escudero Carretero, M.A. Rodríguez Prieto.

Experiences, expectations and demands for informal caregivers of patients in disease processes of long duration.

Enferm Clin, 15 (2005), pp. 220-226

[31.]

M.J. Escudero-Carretero, M.A. Prieto-Rodríguez, I. Fernandez-Fernandez.

Expectations held by type 1 and 2 diabetes mellitus patients and their relatives: the importance of facilitating the health-care process.

Health Expect, 10 (2007), pp. 337-349

http://dx.doi.org/10.1111/j.1369-7625.2007.00452.x | Medline

[32.]

J. Júdez Gutiérrez, M.T. Martínez Ros.

Enfermedades crónicas: ¿por qué seguimos esperando a Godot?.

Aten Primaria, 38 (2006), pp. 8-18

Medline

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