Patients’ and Professionals’ Views on Managing Fibromyalgia

Briones-Vozmediano, Érica; Vives‐Cases, Carmen; Ronda, Elena; Gil‐González, Diana

doi:10.1155/2013/742510

Cited by 97 publications

(101 citation statements)

References 58 publications

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“…In diseases such as fibromyalgia, the psychosocial aspects of medical management become more essential, which may be due in part to providers’ lack of training and knowledge in effective therapies that address these challenges [36]. Indeed, these patients expect more moral support from health professionals, while providers often need to address sources of frustration in treating difficult patients [37]. The use of advocacy and support groups may help bridge this gap.…”

Section: Discussionmentioning

confidence: 99%

Factors in Patient Empowerment: A Survey of an Online Patient Research Network

Chiauzzi

DasMahapatra

Cochin

et al. 2016

Patient

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BackgroundProviders and healthcare organizations have begun recognizing the importance of patient empowerment as a driver of patient-centered care. Unfortunately, most studies have investigated empowerment with single diseases. Identifying factors of empowerment across conditions and populations would enable a greater understanding of this construct.ObjectiveThe purpose of this study was to understand empowerment in relation to health information-seeking, interactions with providers and peers, and healthcare access in chronic disease patients. This study also sought to identify key empowerment factors and their association with patient characteristics.MethodsParticipants were recruited through PatientsLikeMe, an online research platform where patients share their personal and medical history data. Patients completed an online survey that assessed self-reported health behavior (e.g. knowledge-seeking, experiences with healthcare providers, and peer interactions) and healthcare access. An exploratory factor analysis identified key empowerment domains. Domain level sum scores and sum of all domains (total score) were compared across patient characteristics and diseases.ResultsOverall, 3988 participants were included in the study, with the majority actively involved in their healthcare, but many cited difficulties with matching their treatment goals with those of their physician (34 %) and spending sufficient time with the physician (36 %). Factor analysis identified two domains—Positive Patient–Provider Interaction, and Knowledge and Personal Control—that explained >60 % of the overall variance in the observed variables. Mean total empowerment scores for patients with a primary complaint of Parkinson’s disease (61.8) and multiple sclerosis (60.3) were significantly greater than fibromyalgia (55.3) and chronic fatigue syndrome (54.8). Patients who were older, male, more educated, and insured also reported significantly greater levels of empowerment.ConclusionsThe two domains of empowerment identified in this study are consistent with previous studies, but the differences in empowerment levels across diseases suggest a need for further studies on disease-related attributes of empowerment. Future research should examine the pathways for empowerment, as well as the relationship between empowerment domains and clinical outcomes.Electronic supplementary materialThe online version of this article (doi:10.1007/s40271-016-0171-2) contains supplementary material, which is available to authorized users.

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Section: Discussionmentioning

confidence: 99%

Factors in Patient Empowerment: A Survey of an Online Patient Research Network

Chiauzzi

DasMahapatra

Cochin

et al. 2016

Patient

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“…We hoped to gain insights into the social construction of the illness from the patients' and professionals' perspectives (Briones-Vozmediano, Ronda-Pérez, & Vives-Cases, 2014; Briones-Vozmediano, Vives-Cases, Ronda-Pérez, & Gil-González, 2013). In the present study we focused on women´s accounts of daily events.…”

Section: Design and Participantsmentioning

confidence: 99%

“I'm not the woman I was”: Women's perceptions of the effects of fibromyalgia on private life

Briones-Vozmediano

Vives‐Cases

Goicolea

2016

Health Care for Women International

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“…This is a difficult condition to treat 18 and is a challenge both for patients who experience it and physicians who treat it. 19 Complementary therapies need to be explored. [20][21][22] Motivation and extent of practice A subset of those who completed the RCT went on to enter the extension trial (n = 20), which required further diligent qigong practice, and those who completed the extension trial (n = 13) reported prominent and sustained health benefits.…”

Section: Underlying Principles Of Qualitative Analysismentioning

confidence: 99%

Qualitative Analysis of a Controlled Trial of Qigong for Fibromyalgia: Advancing Understanding of an Emerging Health Practice

Sawynok

Lynch²

2014

The Journal of Alternative and Complementary Medicine

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This retrospective qualitative analysis of information collected in an RCT of qigong for fibromyalgia indicates that favorable initial experiences with the practice over 8 weeks predispose to continued practice and more health effects. Future individual trials and meta-analyses of qigong will need to attend to the amount, and potentially quality, of practice undertaken in considering trial outcomes.

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Patients’ and Professionals’ Views on Managing Fibromyalgia

Cited by 97 publications

References 58 publications

Factors in Patient Empowerment: A Survey of an Online Patient Research Network

Factors in Patient Empowerment: A Survey of an Online Patient Research Network

“I'm not the woman I was”: Women's perceptions of the effects of fibromyalgia on private life

Qualitative Analysis of a Controlled Trial of Qigong for Fibromyalgia: Advancing Understanding of an Emerging Health Practice

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