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      The 4 U’s Rule of Fibromyalgia: A Proposed Model for Fatigue in a Sample of Women with Fibromyalgia: A Qualitative Study

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          Abstract

          Although fatigue usually goes unnoticed, it is a symptom that poses great challenges to patients with fibromyalgia and is a strong limitation. The aim of this study is to identify and describe the variables involved in fatigue in nine different situations of the Goal Pursuit Questionnaire (GPQ) that may occur in the daily lives of women with fibromyalgia, according to an ABC (Antecedents–Behaviors–Consequences) model. This study followed a qualitative descriptive research method and a deductive–inductive hybrid approach based on a phenomenological paradigm. Twenty-six women with fibromyalgia participated in focus group discussions between February and March of 2018. Thematic content analysis was carried out from transcribed verbatim interviews. We identified nine major themes that emerged from the participants’ conversations: self-imposed duties, muscle fatigue, overwhelming feeling of tiredness, difficulty thinking, difficulty concentrating, negative emotions, lifestyle changes, affected everyday activities, and lack of motivation for daily activities and social interactions. We conclude that the ABC model allowed certain elements to emerge regarding the fatigue experience, highlighting its importance as a symptom in fibromyalgia. This additional analysis of the ABC model showed that fatigue can be described through the 4 U’s Rule, which is integrated by these four adjectives: (1) Unpredictable, (2) Uncontrollable, (3) Unseen, and (4) Unintelligible. Identifying these characteristics can contribute to a better understanding of fibromyalgia in addition to better treatment for these patients.

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          Patient perspectives on the impact of fibromyalgia.

          The objective of this study was to elicit and assess important symptom domains and the impact of fibromyalgia on patients' quality of life and functioning from a patient's perspective. The intention was to collect this information as part of an overall effort to overcome shortcomings of existing outcome measures in fibromyalgia. This was a qualitative study in which six focus group sessions with 48 women diagnosed with fibromyalgia were conducted to elicit concepts and ideas to assess the impact of fibromyalgia on their lives. The focus groups conducted with fibromyalgia patients identified symptom domains that had the greatest impact on their quality of life including pain, sleep disturbance, fatigue, depression, anxiety, and cognitive impairment. Fibromyalgia had a substantial negative impact on social and occupational function. Patients reported disrupted relationships with family and friends, social isolation, reduced activities of daily living and leisure activities, avoidance of physical activity, and loss of career or inability to advance in careers or education. The findings from the focus groups revealed that fibromyalgia has a substantial negative impact on patients' lives. A comprehensive assessment of the multiple symptoms domains associated with fibromyalgia and the impact of fibromyalgia on multidimensional aspects of function should be a routine part of the care of fibromyalgia patients.
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            Identifying the clinical domains of fibromyalgia: contributions from clinician and patient Delphi exercises.

            In evaluating the effectiveness of fibromyalgia (FM) therapies, it is important to assess the impact of those therapies on the full array of domains considered important by both clinicians and patients. The objective of this research was to identify and prioritize the key clinically relevant and important domains impacted by FM that should be evaluated by outcome assessment instruments used in FM clinical trials, and to approach consensus among clinicians and patients on the priority of those domains to be assessed in clinical care and research. Group consensus was achieved using the Delphi method, a structured process of consensus building via questionnaires together with systematic and controlled opinion feedback. The Delphi exercises involved 23 clinicians with expertise in FM and 100 patients with FM as defined by American College of Rheumatology criteria. The Delphi exercise revealed that the domains ranked most highly by patients were similar to the domain rankings by clinicians. Pain was consistently ranked highest by both panels. Fatigue, impact on sleep, health-related quality of life, comorbid depression, and cognitive difficulty were also ranked highly. Stiffness was ranked highly by patients but not clinicians. In contrast, side effects was important to clinicians but was not identified as important in the patient Delphi exercise. The clinician and patient Delphi exercises identified and ranked key domains that need to be assessed in FM research. Based on these results, a conceptual framework for measuring patient-reported outcomes is proposed.
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              Are women with fibromyalgia less physically active than healthy women?

              The primary purpose was to quantify and compare physical activity in fibromyalgia (FM) patients to age-matched healthy controls using both objective and self-report measures. Secondary purposes were to compare self-reported and objective measurement of physical activity and to evaluate the relationship between physical activity and pain and mood. Patients with FM (n=39) and healthy controls (n=40) completed the International Physical Activity Questionnaire and wore an accelerometer at the hip for 7 d. Pain and mood were measured using the McGill Pain Questionnaire, Pain Catastrophizing Scale, Beck Depression Inventory, State-Trait Anxiety Inventory, Profile of Mood States, and Fibromyalgia Impact Questionnaire. FM patients had significantly lower physical activity than controls measured by both the International Physical Activity Questionnaire and accelerometer (P 0.05). Finally, physical activity levels were negatively related (r=-0.37, P<0.05) to depressed mood for FM patients and positively related (r=-0.41, P<0.05) to self-reported vigor for healthy controls. This controlled study objectively demonstrates that FM patients are less physically active than healthy controls, thus extending on two earlier investigations that did not show differences in total physical activity levels using wrist-mounted actigraphy methods. Physical activity levels were not predictive of pain in FM but were significantly related to depressed mood. FM patients may also have a greater variability in their manner of self-report than healthy controls. Therefore, physical activity measurement in FM patients should not be limited solely to self-report measures. © 2011 by the American College of Sports Medicine
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                Author and article information

                Journal
                Int J Environ Res Public Health
                Int J Environ Res Public Health
                ijerph
                International Journal of Environmental Research and Public Health
                MDPI
                1661-7827
                1660-4601
                27 August 2020
                September 2020
                : 17
                : 17
                : 6224
                Affiliations
                [1 ]Department of Psychology of Universidad Rey Juan Carlos, Avenida Atenas s/n, 28922 Alcorcón, Spain; lilian.velasco@ 123456urjc.es (L.V.-F.); lorena.gutierrezh@ 123456urjc.es (L.G.-H.); mateos.pintado.beatriz@ 123456gmail.com (B.M.-P.); dangarvi@ 123456ucm.es (D.G.-d.C.); sheila.blanco.rico@ 123456urjc.es (S.B.-R.); lucialogrosan@ 123456gmail.com (L.S.-C.)
                [2 ]Department of Behavioural Sciences and Health of Universidad Miguel Hernández, Avinguda de la Universitat d’Elx s/n, 03202 Elche, Spain; slroig@ 123456umh.es (S.L.-R.); mapastor@ 123456umh.es (M.Á.P.-M.)
                Author notes
                [* ]Correspondence: cecilia.penacoba@ 123456urjc.es ; Tel.: +34-91-488-8864
                Author information
                https://orcid.org/0000-0001-6307-5921
                Article
                ijerph-17-06224
                10.3390/ijerph17176224
                7504300
                02383841-cd9b-4d78-b1ed-e22e55e525b0
                © 2020 by the authors.

                Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license ( http://creativecommons.org/licenses/by/4.0/).

                History
                : 12 August 2020
                : 25 August 2020
                Categories
                Article

                Public health
                fibromyalgia syndrome,fatigue,focus groups,qualitative research,hybrid approach,narrative analysis

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