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

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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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