"You have to believe the patient": What do people with fibromyalgia find helpful (and hindering) when accessing health care?

Background: Fibromyalgia (FM) is a complex, still poorly understood, and difficult-to-treat chronic pain condition for which many people struggle to find adequate care. Aims: This study investigated the research question, "What do people accessing health care services for fibromyalgia perceive as helpful, hindering, and absent but desired?" with the aim of identifying clear, implementable changes for clinical practice. Materials and methods: This study used the enhanced critical incident technique (ECIT), a qualitative research method that focuses on helping, hindering, and desired factors, to explore the health care experiences of 14 individuals (12 women and 2 men) diagnosed with FM. Results: Using qualitative data analysis, results identified three categories of health care experiences: (1) systemic navigation, including financial and economic security; accessibility, flexibility, and continuity of care; and diversity of treatment options; (2) clinician-patient alliance, including invalidation and prejudice; therapeutic bond; and clinician-patient alignment on treatment plan; and (3) patient self-management strategies, including information-seeking and education, self-advocacy, social supports, symptom management strategies, and other coping strategies. Participants tended to conceptualize their health care concerns as a multilayered systemic problem. Conclusions: Participants described a medical system they perceived as poorly equipped to support their needs and tended to invalidate their health concerns. Helping experiences tended to be the result of unique efforts on the part of individual clinicians. Findings emphasize the importance of recognizing the complexities and psychological impact of pain, trusting clinician-patient relationships, multidisciplinary/interdisciplinary care within a biopsychosocial framework, and improved education and awareness around psychosocial aspects of FM and effective management of chronic pain.

Contexte: La fibromyalgie est une maladie chronique complexe, encore mal comprise et difficile à traiter, pour laquelle beaucoup de gens ont du mal à trouver des soins adéquats.Objectifs: Cette étude s'est penchée sur la question de recherche : « Qu'est-ce que les personnes qui ont accès aux soins de santé pour la fibromyalgie perçoivent comme utile, gênant, et absent mais désiré? ¼ en vue de définir des changements clairs et réalisables pour la pratique clinique.Matériaux et méthodes: Cette étude a utilisé la technique des incidents critiques améliorée, une méthode de recherche qualitative qui met l'accent sur les facteurs aidants, entravants et souhaités, afin d'étudier les expériences de soins de santé de 14 personnes (12 femmes et 2 hommes) ayant reçu un diagnostic de fibromyalgie.Résultats: À l'aide d'une analyse qualitative des données, les résultats ont permis de définir trois catégories d'expériences de soins de santé : (1) la navigation systémique, y compris la sécurité financière et économique; l'accessibilité, la flexibilité et la continuité des soins; et la diversité des options de traitement; (2) l'alliance clinicien-patient, y compris l'invalidation et les préjugés; le lien thérapeutique; et l'alignement clinicien-patient sur le plan de traitement; et (3) les stratégies d'auto-prise en charge des patients, y compris la recherche d'information et l'éducation, l'autonomie sociale, les soutiens sociaux, les stratégies de prise en charge des symptômes et d'autres stratégies d'adaptation. Les participants avaient tendance à conceptualiser leurs préoccupations en matière de soins de santé comme un problème systémique à plusieurs niveaux.Conclusions: Les participants ont décrit un système médical qu'ils percevaient comme mal outillé pour répondre à leurs besoins et qui avait tendance à invalider leurs préoccupations en matière de santé. Les expériences d'aide tendaient à être le résultat d'efforts isolés de la part de certains cliniciens. Les résultats soulignent l'importance de reconnaître la complexité et les répercussions psychologiques de la douleur, des relations de confiance entre cliniciens et patients, des soins multidisciplinaires ou interdisciplinaires dans un cadre biopsychosocial. Ils soulignent aussi l'importance d'améliorer l'éducation et la sensibilisation aux aspects psychosociaux de la fibromyalgie et de la prise en charge efficace de la douleur chronique.

Injured workers' construction of expectations of return to work with sub-acute back pain: the role of perceived uncertainty.

INTRODUCTION: Little is known about the formation of expectations of return to work (RTW) from the perspective of injured workers with back injuries. This modified grounded theory study uses a biopsychosocial approach that considers the workers' complex social circumstances, to unpack the multidimensional construct of expectations of RTW from the injured worker's perspective. METHOD: Initial semi-structured interviews were conducted with 18 individuals with sub-acute back pain, who were off work between 3 and 6 months. Follow-up interviews were conducted with 7 participants for the purposes of member checking. The interview data was coded, compared and analyzed over the course of data collection, until saturation was reached. RESULTS: Data analysis revealed that expectations of return-to-work are constructed based on perceived uncertainty which subsumes five inter-related categories (1) perceived lack of control over the return-to-work process, (2) perceived lack of recognition by others of the impact of the injury, (3) perceived inability to perform the pre-injury job, (4) fear of re-injury, and (5) perceived need for workplace accommodations. Expectations, once formed, were influenced by the worker's experience of coping with perceived uncertainty. CONCLUSION: Perceived uncertainty plays a key role in injured workers' formation of expectations of return-to-work. Implications are discussed regarding how this perceived uncertainty plays a role in the development of (re)injury prevention and rehabilitation programs. The importance of further research on perceived uncertainty is presented, along with potential future research considerations.

Pain behavior and the development of pain-related disability: the importance of guarding.

OBJECTIVE: To examine prospectively the association between the 4 categories of objectively assessed pain behavior and various disability outcomes. In the present study, relationships among the 4 categories of pain behavior and various disability-related outcomes were examined. METHODS: One hundred forty-eight workers were identified within 6 weeks of a first episode of low-back pain in the workplace. During a physical examination, observations were made of guarding, words, sounds, and facial expressions of pain. Three months later, participants were evaluated with respect to return to work and standardized self-report measures of pain-related disability. Administrative records were examined to determine the number of days lost and costs associated with their rehabilitation. RESULTS: Only guarding showed consistent prospective associations with all disability outcomes. When examined in the context of other variables that have been associated with disability in the same population, guarding showed consistent independent associations. DISCUSSION: Guarding behavior may play a role in the transition from acute to chronic pain. The findings underscore the multidimensional nature of pain behavior and suggest that there is value in examining overt pain behaviors in prospective studies of the development of chronic occupational pain disability.

Prediction of occupational disability from psychological and neuropsychological evidence in forensic context.

Within the fields of psychiatry, psychology, and neuropsychology, medical examiners are often tasked with providing an opinion about an injured individual's health prognosis and likelihood of returning to work. Traditionally, examiners have conducted such assessments by employing clinical intuition, expert knowledge, and judgment. More recently, however, an accumulation of research on factors predictive of disability has allowed examiners to provide prognostications using specific empirically supported evidence. This paper integrates current evidence for four common clinical issues encountered in forensic assessments-musculoskeletal pain, depression, Posttraumatic Stress Disorder, and traumatic brain injury. It discusses an evidence-informed, cross-diagnostic and multifactorial model of predicting disability that is emerging from the literature synthesis, along with recommendations for best forensic assessment practice.

Non-modifiable worker and workplace risk factors contributing to workplace absence: A stakeholder-centred synthesis of systematic reviews.

BACKGROUND: Workplace stakeholders report the identification and translation of relevant high quality research to inform workplace disability policy and practice is a challenge. The present study engaged academic and community stakeholders in conducting a best evidence-synthesis to identify non-modifiable risk and protective worker and workplace factors impacting work-related absence across a variety of health conditions. OBJECTIVE: To identify non-modifiable worker and workplace disability risk and protective factors impacting work-related absence across common health conditions. METHODS: The research team searched Medline, Embase, CINAHL, The Cochrane Library, PsycINFO, BusinessSource-Complete, and ABI/Inform from 2000 to 2011. Quantitative, qualitative, or mixed methods systematic reviews of work-focused population were considered for inclusion. Two or more reviewers independently reviewed articles for inclusion and methodological screening. RESULTS: The search strategy, including expert input and grey literature, led to the identification of 2,467 unique records. From this initial search, 2325 were eliminated by title or abstract review, 142 articles underwent comprehensive review to assess for inclusion, 26 systematic reviews met eligibility criteria for this synthesis. For non-modifiable worker and workplace factors we found consistent evidence across two or more health conditions for increased risk of disability in situations where workers experience lower education, older age, emotional distress, poor personal functioning, decreased physical functioning, psychological symptoms, overweight status, and greater sick leave history. LIMITATIONS: Heterogeneity of existing literature due to differences in outcome measures, definitions and research designs limited ability to assess effect size and results reflect findings limited to English-language papers.

Modifiable workplace risk factors contributing to workplace absence across health conditions: A stakeholder-centered best-evidence synthesis of systematic reviews.

BACKGROUND: A challenge facing stakeholders is the identification and translation of relevant high quality research to inform policy and practice. This study engaged academic and community stakeholders in conducting a best evidence-synthesis to enhance knowledge use. OBJECTIVES: To identify modifiable workplace disability risk and protective factors across common health conditions impacting work-related absence. METHODS: We searched MEDLINE, Embase, CINHAL, The Cochrane Library, PsycINFO, BusinessSourceComplete, and ABI/Inform from 2000 to 2011. Systematic reviews that employed quantitative, qualitative, or mixed methods of work-focused population were considered for inclusion. Two or more independent reviewers reviewed titles only, titles and abstracts, and/or full articles when assessing eligibility for inclusion. Selected articles underwent methodological screening. RESULTS: The search strategy, expert input and grey literature identified 2,467 unique records from which 142 full text articles underwent comprehensive review. Twenty-seven systematic reviews met eligibility criteria. Modifiable work factors found to have consistent evidence across two or more health conditions included lack of social support, increased physical demands at work, job strain, lack of supervisory support, increased psychological demands, low job satisfaction, low worker control of job, and poor leadership quality. CONCLUSIONS: The active engagement of stakeholders led to greater understanding of relevance of the study findings for community stakeholders and appreciation of the mutual benefits of collaboration.

Models of return to work for musculoskeletal disorders.

BACKGROUND: Musculoskeletal pain disorders are the most prevalent, costly, disabling, and commonly researched conditions in the workplace, yet the development of overarching conceptual models of return to work (RTW) in these conditions has been lagging. METHOD: A critical review of the literature was performed using multiple medical and health search engines in order to provide an evaluation of the evolution and the state of the art of health and disability models with a focus on specific models of RTW. RESULTS: The main tenets, implications for diagnosis, treatment, and disability compensation, are the key perspectives analyzed for the following specific models of RTW: biomedical, psychosocial, forensic, ecological/case management, biopsychosocial, and two more recent models developed by the Institute of Medicine and the World Health Organization, respectively. CONCLUSIONS: Future development of models that are truly transdisciplinary, and address temporal and multidimensional aspects of occupational disability, remains a goal.

Prognosis and the identification of workers risking disability: research issues and directions for future research.

INTRODUCTION: Screening procedures based on prognostic data are an important prerequisite for prevention of disability due to low-back pain. This paper reviews the research on prognosis to delineate the most pertinent research challenges, and outlines directions for future research to improve the scientific quality and screening accuracy of prognostic efforts. METHODS: Reviews of prognosis research were examined to identify key methodological and research issues. RESULTS: Certain issues such as sampling procedures, research designs, data analyses, prognostic indicators, and follow-up procedures limit the value of prior studies. Absence of a clear conceptual framework hampers interpretation of findings and moving research questions forward. The recurrent nature of back pain and the need to effectively include the impact of employer actions and the job market were also identified as significant issues. CONCLUSIONS: Future research will be enhanced by addressing conceptual and definitional issues, applying tested and sensible measures, and careful follow-up of the study population.

Determinants of occupational disability following a low back injury: a critical review of the literature.

The aim of this research was to determine prognostic indicators of work disability in occupational back pain as reported in the literature, by systematically searching the research literature, assessing the methodological quality of the research, and synthesizing the findings into a concise summary. An article was considered eligible for review if research participants had an injury of the back, the article was based on original research, published in English, and involved a cohort with back pain less than 6 months post injury with at least one follow up assessment. Each article was independently reviewed by two "blinded" reviewers using 19 appraisal criteria for methodological quality of prognostic studies. Nineteen studies met the methodological standard to be included. Time since onset, demographic factors, functional disability, psychological distress, pain reports, previous episodes, and work environment were identified as important prognostic factors. Most studies compartmentalized the factors they considered. What is needed is a comprehensive multivariate biopsychosocial job-related model of work disability.

Biopsychosocial multivariate predictive model of occupational low back disability.

STUDY DESIGN: To establish outcome, 253 workers with subacute and chronic low back conditions were assessed with a comprehensive multimethod biopsychosocial protocol at baseline, 3 days after the initial examination, and 3 months later. OBJECTIVE: To validate empirically a biopsychosocial model for prediction of occupational low back disability. SUMMARY OF BACKGROUND DATA: Costs of low back occupational disability continue to spiral despite stabilization of low back injury rates. An empirically based model to predict occupational disability in workers with low back injuries is required. METHODS: Workers with subacute low back injuries (4-6 weeks after injury, n = 192) and those with chronic back pain (6-12 months after injury, n = 61) were the study participants. The biopsychosocial protocol included five groups of variables: 1) sociodemographic, 2) medical, 3) psychosocial, 4) pain behavior, and 5) workplace-related factors. Predictive validity was investigated through a 3-month follow-up assessment, at which time the return to work outcome was determined. Stepwise logistic regression models were developed to predict work status. RESULTS: The final integrated model consisted of variables from a wide biopsychosocial spectrum: vitality, health transition, feeling that job is threatened due to injury, expectations of recovery, guarding behavior, perception of severity of disability, time to complete walk, and right leg typical sciatica. CONCLUSIONS: The "winning" variables identified in the integrated model are dominated by cognitions, which are accompanied by disability behaviors. A cognitive-behavioral model with an adaptation-oriented rather than a pathology-oriented focus is favored for early intervention with high-risk workers since cognitions are amenable to change.

Are components of a comprehensive medical assessment predictive of work disability after an episode of occupational low back trouble?

STUDY DESIGN: One hundred fifty-nine subacute low back work-injured patients completed a full medical assessment at baseline. A full repeat examination was performed 3 months later, when return-to-work status was determined. OBJECTIVE: To determine the prognostic value of a comprehensive medical assessment for the prediction of return-to-work status. SUMMARY OF BACKGROUND DATA: A systematic review of the work disability prediction literature of low back trouble prognosis revealed that no high-quality studies included a full medical history and physical examination in the design. The results of studies included in the systematic review were equivocal with respect to predictive usefulness of medical variables. METHODS: Participants completed medical history questionnaires and then were clinically examined by one of six experienced examiners (three physicians and three physiotherapists). Return-to-work status was measured 3 months later, and predictive validity was evaluated using logistic regression modeling. RESULTS: Medical variables (, medical history subscales, physical examination subscales, and lumbar range-of-motion tests) showed modest correct classification rates varying between 61.6% and 69.1% for participants. CONCLUSIONS: Comprehensive medical assessments play a crucial role in the early identification of serious pathology after low back trouble. We were unable to identify, however, any medical evaluation variables that would account for significant proportions of variance in return to work. The weight of evidence obtained in this study suggests that injured workers' subjective interpretations and appraisals may be more powerful predictors of the course of postinjury recovery than exclusively medical assessments.