Lived Experiences of Cognitive Dysfunction in Fibromyalgia: How Patients Discuss Their Experiences and Suggestions for Patient Education.

Cognitive dysfunction (CD) is a common, impairing symptom experienced by persons with fibromyalgia (FM). This study explored how individuals with FM describe their experience of CD in an online peer support environment. Posts referencing cognitive symptoms were extracted from two Facebook FM peer support groups at two timepoints. Using inductive Thematic Analysis, key discussion themes were identified and compared across groups and time. Four themes represented the way members described their cognitive experiences in FM: understanding and describing CD experiences, distrust of cognitive abilities, choosing between pain and medication side effects, and misunderstanding and judgement from others. Two themes represented the impact of CD on members' lives: impaired social interaction and loss of identity. Group members described broad impairments in daily functioning that significantly and negatively impacted their quality of life, indicating CD symptoms may play a more prominent role in the FM experience than previously understood. An infographic is included to aid patient education and help facilitate patient-provider discussions of CD symptoms.

"Don't need [therapy]! Not necessary, that's what we're for!": Does content from fibromyalgia Facebook peer support groups emulate psychological flexibility principles?

Objective: Many persons with fibromyalgia (FM) use online peer support groups (OPSGs) to address unmet emotional or psychological needs. Some OPSG members have suggested that participation in an OPSG is a viable substitute for professional psychological services, however, no published research exploring this claim was identified. Methods: Discussion content collected from three Facebook FM OPSGs was thematically analyzed to explore whether the content posted in FM OPSGs emulated content consistent with the psychological flexibility model underlying Acceptance and Commitment Therapy (ACT) - an evidence-based psychotherapy for chronic pain conditions. Results: The content posted in OPSGs did not emulate and often contradicted the core psychological flexibility processes or skills emphasized in ACT programs. Conclusion: Participation in an FM OPSG should be approached cautiously. Content from the FM OPSGs should not be considered a substitute for professionally delivered ACT, although participation may provide emotional support to help individuals move towards readiness for active psychotherapy. Innovation: This research represents a novel application of the psychological flexibility model underlying ACT to assess the potential therapeutic value of a peer support community. Additionally, it is the first to clarify that content in FM OPSGs is not aligned with psychological flexibility processes.

"My Fibro Family!" A qualitative analysis of facebook fibromyalgia support groups' discussion content.

Background: Fibromyalgia (FM) is a diagnostically controversial syndrome characterized by chronic widespread pain, fatigue, sleep difficulties, cognitive dysfunction, and mental health symptoms. Though online peer support groups (OPSGs) may help persons with FM access support and information, there are concerns that such groups can be harmful. Aims and Methods: Using a nonparticipatory observational stance, the authors analyzed discussions in three Facebook FM OPSGs (approximately 15,000 members, mostly women) to determine what themes best characterize their discussion content and whether being in a particular group was related to the type of thematic content to which they were exposed. Results: Two themes were identified that represented explicit reasons group members participated in the OPSG (trying to understand FM and seeking/offering emotional support). Six themes represented underlying reasons members sought informational and emotional support in FM OPSGs (fighting FM, learning to live with FM, struggling with identity, distressing thoughts and feelings, judgment, empowerment-seeking). No salient differences were identified between the thematic content of each group. Conclusions: The findings suggest that FM OPSGs may provide much needed psychosocial and emotional support regarding important aspects of psychological adjustment to living with FM while also inadvertently encouraging approaches to living with FM that do not align with evidence-based FM management recommendations (e.g., investment in fighting rather than accepting FM). These findings may be useful to patients considering joining an FM OPSG and to health providers helping patients navigate to resources that can address their emotional or psychological support needs.

Contexte: La fibromyalgie (FM) est un syndrome dont le diagnostic est controversé et qui se caractérise par des douleurs chroniques généralisées, de la fatigue, des troubles du sommeil, un dysfonctionnement cognitif et des symptômes de santé mentale. Bien que les groupes de soutien par les pairs en ligne puissent aider les personnes atteintes de FM à obtenir du soutien et de l'information, certains s'inquiétent du fait que ces groupes peuvent être nuisibles.Buts et méthodes: En utilisant une position d'observation non participative, les auteurs ont analysé les discussions dans trois groupes de soutien par les pairs en ligne FM sur Facebook (environ 15 000 membres, principalement des femmes) pour déterminer quels thémes caractérisent le mieux leur contenu de discussion et si le fait de faire partie d'un groupe particulier était lié au type de contenu thématique auquel ils ont été exposés.Résultats: Deux thémes représentant les raisons explicites pour lesquelles les membres du groupe ont participé au groupe de soutien par les pairs en ligne ont été recensés (essayer de comprendre la fibromyalgie et rechercher/offrir un soutien émotionnel). Six champs thématiques représentaient les raisons sous-jacentes pour lesquelles les membres cherchaient de l'information et du soutien émotionnel dans les groupes de soutien par les pairs en ligne FM (combattre la fibromyalgie, apprendre à vivre avec la fibromyalgie, avoir des difficultés d'identité, les pensées et sentiments pénibles, le jugement, la recherche de l'autonomie). Aucune différence marquante n'a été observée dans le contenu thématique d'un groupe à l'autre.Conclusions: Les résultats indiquent que les groupe de soutien par les pairs en ligne FM peuvent fournir des services psychosociaux indispensables et un soutien émotionnel concernant des aspects importants de l'adaptation psychologique à la vie avec la FM, tout en encourageant par inadvertance des approches de vie avec la FM qui ne correspondent pas aux recommandations de prise en charge de la FM fondées sur des données probantes (par exemple, investir dans la lutte contre la FM plutôt que de l'accepter). Ces résultats peuvent être utiles aux patients qui envisagent de se joindre à un groupe de soutien par les pairs en ligne FM et aux prestataires de soins de santé qui aident les patients à trouver des ressources qui peuvent répondre à leurs besoins de soutien émotionnel ou psychologique.

Identifying the features of partner acceptance of arthritis: A qualitative analysis.

BACKGROUND: Patients who are more accepting of their chronic arthritis pain report better physical, mental, and occupational functioning, but acceptance of arthritis from the partner perspective has received little attention in the literature. In fact, no attempts have been made to define partner acceptance of arthritis and no psychometrically validated measure currently exists. AIMS: The aim of this study was to use qualitative research methods to identify the features of partner acceptance of arthritis and examine the similarities and differences between patient and partner acceptance in an arthritis context. METHODS: Twenty-one romantic partners of individuals with arthritis participated in a semistructured interview focusing on their experiences adjusting to their spouse's arthritis and their general perceptions of the meaning of acceptance. Interview transcripts were coded using thematic analysis. RESULTS: Partners' descriptions of acceptance differed slightly across accounts, but the majority of participants agreed that acceptance is part of a positive process of adjusting to arthritis. Six themes that characterize the acceptance process were identified: (1) understanding the nature of arthritis; (2) believing in the patient's pain experience; (3) living with negative feelings; (4) establishing a new normal; (5) engaging in valued activities; and (6) relationship willingness. CONCLUSIONS: The identified themes share some commonalities with experiential acceptance and patient chronic pain acceptance, although partner acceptance of arthritis also has several unique features. These findings suggest that more research on this distinct construct is merited. Directions for future research on partner acceptance of arthritis are discussed.

Contexte: Les patients qui acceptent davantage leur douleur arhtirtique chronique font état d'un meilleur fonctionnement physique, mental et professionnel, mais l'acceptation de l'arthtite du point de vue du partenaire a reçu peu d'attention dans la littérature. En fait, aucune tentative pour définir l';acceptation de l'arthrite par le partenaire n'a été effectuée, et il n'existe actuellement aucune mesure psychométrique valable.Objectifs: Utiliser les méthodes de la recherche qualitative pour cerner les caractéristiques de l'acceptation de l'arthrite par le partenaire et étudier les similitudes et les différences entre l'acceptation par le patient et l'acceptation par le partenaire dans un contexte d'arthrite.Méthodes: Vingt-et-un conjoints de personnes souffrant d'arthrite ont participé à une entrevue semi-structurée portant sur leur expérience d'adaptation à l'arthrite de leur conjoint ou conjointe et sur leur perception de ce que signifie l'acceptation. Les transcriptions d'entrevues ont été codifiées à l'aide d'une analyse thématique.Résultats: Les descriptions de l'acceptation qu'ont fait les partenaires différaient légèrement d'un récit à l'autre, mais la majorité des participants étaient d'accord pour dire que l'acceptation fait partie d'un processus positif d'adaptation à l'arthrite. Six thèmes caractèrisant le processus d'acceptation ont été répertoriés : (1) comprendre de la nature de l'arthrite; (2) croire l'expérience de douleur vécue par le patient; (3) vivre avec des sentiments négatifs; (4) établir une nouvelle normalité; (5) prendre part à des activités que l'on apprécie ; et (6) disposition à entretenir des relations.Conclusions: Les thèmes rèpertoriès ont certains points communs avec l'acceptation expérientielle et l'acceptation de la douleur chronique du patient, bien que l'acceptation de l'arthrite par le partenaire présente également plusieurs caractéristiques uniques. Ces conclusions indiquent que davantage d'études devraient porter sur ce concept distinct. Des pistes de recherche sur l'acceptation de l'arthrite par le partenaire sont abordées.

Coping Styles, Pain Expressiveness, and Implicit Theories of Chronic Pain.

Whereas some individuals use active coping strategies and are able to adaptively cope with their pain, others use passive strategies and catastrophic appraisals, which are often associated with increased displays of pain behavior and negative pain-related outcomes. To investigate attribution-based implicit theories as a potential underlying mechanism that might affect coping success, we hypothesized that pain patients with an incremental implicit theory of pain (i.e., view pain as malleable) would have more active coping strategies, lower levels of pain expressiveness, and better pain-related outcomes than those with an entity implicit theory of pain (i.e., view pain as nonmalleable). Patients with chronic back pain undergoing a functional assessment completed a variety of self-report measures and participated in a pain-inducing physiotherapy procedure. The results revealed those with an incremental theory of pain used more active coping strategies, displayed less pain behavior, and reported better pain-related outcomes (e.g., lower levels of depression) than individuals with an entity theory of pain. The findings suggest implicit theories of pain may represent an underlying social-cognitive mechanism linked to important coping, emotional, and expressive reactions to chronic pain. Identifying such a mechanism may provide valuable information for the assessment and treatment of chronic pain.

Attractiveness, diagnostic ambiguity, and disability cues impact perceptions of women with pain.

PURPOSE/OBJECTIVE: This experimental study investigated how physical attractiveness, disability cue, and diagnostic ambiguity stereotypes impact perceptions of a patient's pain/disability and personality. RESEARCH METHOD/DESIGN: After viewing photographs of women pictured with or without a cane, accompanied by descriptions of the women's diagnosis (fibromyalgia or rheumatoid arthritis), 147 university students rated the women's pain/disability and personality. RESULTS: Analyses revealed that more attractive women received lower ratings on pain/disability and higher ratings (more positive) on personality. Moreover, those pictured with a disability cue got higher ratings on both pain/disability and personality, and those with medical evidence of pathology (less ambiguity) got higher ratings on pain/disability and lower ratings on personality. Examination of the 3 stereotypes in a single study enabled an evaluation of their interactions. An Attractiveness × Disability Cue × Diagnostic Ambiguity interaction for ratings of pain/disability revealed that the presence of both medical evidence and a disability cue were needed to override the strong "beautiful is healthy" stereotype. Significant 2-way interactions for ratings of personality indicated that the impact of the disability stereotype tends to be overshadowed by the attractiveness stereotype. CONCLUSION/IMPLICATIONS: The results indicate that these stereotypes have a large effect on perceptions of women with chronic pain and that attractiveness, a contextual variable unrelated to the pain experience, exerts an even stronger effect when there is less objective information available. This could have clinical ramifications for assessment and treatment of patients with chronic pain, which often occurs in the absence of "objective" medical evidence or any external cues of disability.

Evaluation of chronic pain-related information available to consumers on the Internet.

OBJECTIVE: Recent surveys suggest more than one third of patients utilize the Internet to seek information about chronic pain (CP) and that 60% of patients feel more confident in the information provided online than provided by their physician. Unfortunately, the quality of online information is questionable. For example, some Websites make unsubstantiated claims while others may have covert motives (i.e., product advertisement). This article presents two studies that utilized a well-validated tool to evaluate the quality of online CP-related information. DESIGN: A Website search was conducted by entering the most commonly used pain-related search terms into the three most commonly used search engines in North America. In study 1, the first 50 Websites from each search were evaluated using a consumer-focused evaluation tool-the DISCERN. In study 2, 21 clients with CP used the DISCERN to rate a random selection of Websites from among the 10 highest scoring and five lower scoring sites from Study 1, and answered open-ended questions regarding the DISCERN and Websites. RESULTS: Ratings indicated that Websites ranged substantially in quality, with many providing incomplete and incorrect information, and others providing accurate and detailed information. The majority of the Websites provided low-quality information. Client ratings of the Websites were consistent with those of the researchers. CONCLUSIONS: Overall, these findings speak to the risks associated with clients making CP-related treatment choices based on information obtained online without first evaluating the Website.

Revised neurobehavioral scales of the MMPI: sensitivity and specificity in traumatic brain injury.

The ability of 23 previously identified Minnesota Multiphasic Personality Inventory (MMPI) "neurologic content" items to distinguish between individuals with traumatic brain injury (TBI; n = 32) or spinal cord injury (SCI; n = 17) was examined. Principal-components analysis of the 23 items revealed three conceptually coherent, nonoverlapping, and uncorrelated factors (Cognitive, Somatic, Inactivity) that together accounted for 44% of the total variance. Coefficients of internal consistency for the factors were in the moderate to high range. Together, the factors were named the Revised Neurobehavioral Scales of the MMPI. The group with TBI scored significantly higher on the Cognitive scale and significantly lower on the Inactivity scale than the group with SCI (with or without depression as a covariate). The Glasgow Coma Scale correlated significantly and negatively with the Cognitive scale in the group with TBI. Discriminant function analysis revealed that together the scales correctly classified individuals with sensitivity and a positive predictive value (with respect to TBI) of 87% and 81%, respectively. Specificity and a negative predictive value (with respect to SCI) were 68% and 76%, respectively. The overall rate of correct classification of individual cases was 80% (with or without depression in the analysis). The Cognitive scale alone correctly classified individuals in the group with TBI with a positive predictive value of 84%. Findings are discussed in terms of the discriminative validity and potential utility of TBI-related MMPI items, as well as the issue of "neurocorrection" of the MMPI (or MMPI-2) in verified cases of TBI.

Comparing two observational systems in the assessment of knee pain.

OBJECTIVE: Research has demonstrated the utility of the Pain Behavior Measurement (PBM) system as a pain index. PBM involves the recording of sighing, rubbing, grimacing, guarding and bracing. A modification of this system has been proposed, focusing on the occurrence of joint flexing, rubbing, unloading the joint, guarding and rigidity, specifically for patients with knee pain. The aim of the present study was to compare the original PBM to the modified version in a sample of knee replacement patients to assess the utility of the more specialized approach. It was expected that the more discomforting physiotherapy activities (knee bending and quadriceps exercises) would result in more pain behaviours than intermediate activities (walking and standing), which, in turn, would result in more pain behaviours than reclining. The extent to which each system reflected this expected pattern was examined. METHODS: Ninety-three seniors were observed while completing a series of structured post-knee surgery physiotherapy activities (knee bending, standing, walking, reclining and a quadriceps exercise). RESULTS: Analyses of self-reported levels of pain were consistent with the expected pattern of pain levels in relation to the physiotherapy activities. Specific pain behaviours within each system (eg, grimacing, rigidity) occurred in a manner consistent with the expected pattern, while other behaviours (e.g., rubbing the affected area) did not. CONCLUSIONS: Although there was no clear advantage for the modified system over the PBM, an optimal approach may involve combining specific behaviours from each system.

The role of health anxiety among patients with chronic pain in determining response to therapy.

Considerable research suggests that health anxiety (HA) influences the response of patients with chronic pain to pain and treatment. The present investigation extends the current understanding of HA and explores whether it affects how patients respond to a common therapeutic intervention, namely instructions to reduce pain behaviour. Sixty-five patients with chronic pain completed measures of pain, anxiety and cognition following an active occupational therapy session in which they were specifically instructed either to inhibit or reduce pain behaviour, or to carry out the session as they normally would. Regression analyses revealed that those with higher levels of HA experienced greater anxiety, somatic sensations and catastrophic cognitions during therapy than those with lower levels of HA. The regression analyses also revealed a consistent trend for an interaction between HA and instructional set; when those with higher HA reduced their pain behaviour, they subsequently reported greater anxiety, and more somatic sensations and catastrophic thoughts than when they carried out the session as they normally would. In contrast, only those with lower HA had a tendency to benefit from reducing pain behaviour, reporting lower state anxiety and fewer somatic sensations during the session than those who did not reduce their pain behaviour. The results suggest that HA should be taken into consideration during treatment.

Using facial expressions to assess musculoskeletal pain in older persons.

Past research examined measures of pain among seniors who were experiencing movement-related exacerbations of musculoskeletal pain and obtained clear support for the utility of the behavioural coding of pain-related body movements (e.g., bracing, guarding). Support for the utility of the Facial Action Coding System (FACS), which involves the objective coding of facial reactions, was not as strong. The findings concerning FACS could have been an artifact of the methodology that was used. Specifically, the duration of the facial reactions was not taken into account and the patients suffered from a variety of painful conditions. Thus, the physical activities involved in the study could have been painful for some patients but not for others. The present study corrected these methodological concerns by accounting for the duration of facial reactions and ensuring that all patients suffered from the same painful condition. Participants were 82 post-surgical (knee replacement) inpatients. Cognitive status was assessed using the Modified Mini Mental Status Examination. Under physiotherapist's supervision, the patients performed structured activities (i.e., reclining, standing, knee bends). Facial reactions were coded using FACS. Facial reactions varied as a function of the degree to which the various activities were strenuous. The results support the utility of FACS in the assessment of musculoskeletal pain among seniors undergoing rehabilitation following knee surgery.