The 2006 National Institutes of Health (NIH) Consensus paper presented recommendations by the Ancillary Therapy and Supportive Care Working Group to support clinical research trials in chronic graft-versus-host disease (GVHD). Topics covered in that inaugural effort included the prevention and management of infections and common complications of chronic GVHD, as well as recommendations for patient education and appropriate follow-up. Given the new literature that has emerged during the past 8 years, we made further organ-specific refinements to these guidelines. Minimum frequencies are suggested for monitoring key parameters relevant to chronic GVHD during systemic immunosuppressive therapy and, thereafter, referral to existing late effects consensus guidelines is advised. Using the framework of the prior consensus, the 2014 NIH recommendations are organized by organ or other relevant systems and graded according to the strength and quality of supporting evidence.
In 2015 the National Institutes of Health (NIH) convened six working groups to address the research needs and best practices for patient-centered late effects of hematopoietic stem cell transplantation (HCT) survivors. The Patient-Centered Outcomes Working Group, charged with summarizing the HRQOL evidence base, used a scoping review approach to efficiently survey the large body of literature in adult and pediatric HCT survivors over 1 year after transplantation. The goals of this paper are to 1) summarize the current literature describing patient-centered outcomes (PCO) in survivors including the various dimensions of healthrelated quality of life affected by HCT and describe interventions tested to improve these outcomes; 2) highlight areas with sufficient evidence allowing for integration into standard practice; 3) address methodological issues that restrict progress in this field; 4) identify major gaps to guide future research; and 5) specify priority research recommendations. PCOs were summarized within physical, psychological, social and environmental domains, as well as for adherence to treatment, and health behaviors. Interventions to improve outcomes were evaluated for evidence of efficacy, although few interventions have been tested in long-term HCT survivors. Methodologic issues defined included lack of consistency in the selection of PCO measures, along with the absence of a standard for timing, frequency, and mode of administration. Recommendations for HCT survivorship care included: integration of annual screening of PCOs; use of evidence based practice guidelines; and provision of treatment summaries and survivorship care plans after HCT. Three priority research recommendations included: 1) Design and test risk-targeted interventions with dose intensity modulation matching the needs of HCT survivors with priority domains including sexual dysfunction, fatigue, sleep disruption, non-adherence to medications & recommended health care, health behaviors including physical inactivity and healthy eating, and psychological dysfunction, with particular consideration of novel technologies to reach HCT survivors distant from their transplant centers, 2) Design a consensus based methodologic framework for outcomes evaluation, and 3) Evaluate and compare existing practices for integrating PCOs screening and interventions across HCT survivorship programs.
Back pain is one of the most common causes of disability in industrialized nations. Despite this, the variables that contribute to disability are not well understood and optimal measurement strategies of disability have not yet been determined. The present study sought to comprehensively assess the strongest predictors of physical activity as a proxy for disability. New patients in a chronic pain specialty clinic completed questionnaires to assess the predictors of physical activity and engaged in 5 days of home data collection wearing an accelerometer to assess physical activity in daily life, which is how disability was operationalized in this study. Analysis of repeated measures patient data revealed that, of 3 composite variables each representing a theoretical model, the model representative of operant factors significantly predicted physical activity. Subsequent analyses showed that pain sensitivity, fear avoidance, and solicitous spousal responses account for a significant amount of the variance in physical activity. These findings suggest that external sources of reinforcement or punishment may serve to influence physical behavior beyond that of internal cues such as fear avoidance or pain. Implications for treatment are discussed, including the potential benefits of specifically incorporating the patient's sources of operant reinforcement or punishment into treatment.
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