Development of the Warwick Axial Spondyloarthritis faTigue and Energy questionnaire (WASTEd)-a new patient-reported outcome measure.

Objective: The aim was to co-produce and test a potential new patient-reported outcome measure (PROM), the Warwick Axial Spondyloarthritis faTigue and Energy questionnaire (WASTEd), providing vital qualitative confirmation of conceptual relevance, clarity and acceptability. Methods: Informed by measurement theory, we collaborated with patient partners throughout a three-stage, iterative process of PROM development. In stage 1, informed by patient interviews, reviews exploring patients' fatigue experiences and existing PROMs of fatigue, an initial measurement framework of axial spondyloarthritis (axSpA) fatigue and energy and candidate items were defined. In stage 2, the relevance and acceptability of the measurement framework and candidate items were assessed qualitatively by focus group participants. In stage 3, patients participated in pre-testing interviews to assess item comprehensiveness, relevance, acceptability and comprehensibility. Results: Stage 1 informed the development of an initial five-domain measurement framework with 59 candidate items. In stage 2, five patients and seven health-care professionals participated in four focus groups to derive a 40-item model of fatigue and energy. Collaborative engagement with patient research partners supported refinement of questionnaire structure and content further. Pre-testing with ten patients across two interview rounds in stage 3 produced a four-domain, 30-item long-form questionnaire. Conclusion: An active collaboration with patients and health-care professionals has supported the co-production of a potential new PROM of axSpA fatigue, underpinned by strong evidence of face and content validity. The WASTEd extends the assessment of fatigue beyond severity, highlighting the importance of symptom frequency, energy and self-management. Future research will involve psychometric evaluation, supporting item reduction, structural refinement and confirmation of PROM validity.

Qualitative interview study exploring the patient experience of living with axial spondyloarthritis and fatigue: difficult, demanding and draining.

OBJECTIVE: To explore patients' lived experiences of axial spondyloarthritis (axSpA) and fatigue. DESIGN: Interpretative phenomenological analysis (lived experience) was used as the study design. Analysis drew together codes with similar meaning to create superordinate and subordinate themes. SETTING: Rheumatology departments in three National Health Service Foundation Trusts in the north, midlands and south of England. PARTICIPANTS: A purposive sample of seventeen axSpA patients were recruited. The age range was 22-72 years (median age 46), nine were male and eight, female. RESULTS: A central concept of achieving balance was identified as the active process of integrating axSpA symptoms and fatigue into daily life, working with and not against their condition to lead a fulfilled life. This was conveyed through three superordinate themes: struggling to find energy, engaging in everyday life and persevering through difficulties. Struggling to find energy was the challenge of retaining enough stamina to do things in daily life. Engaging in everyday life highlighted dedication to being active and organised, learning through experience and acceptance of a changed way of being. Persevering through difficulties identified the physical and emotional effort required to keep moving forward and the importance of feeling supported. CONCLUSION: Achieving balance through finding energy, engaging and persevering everyday was fundamental to having the best possible life. The experience of energy emerged as a distinct but related component of fatigue. However, while energy could be maintained or replenished, fatigue was more difficult to overcome and required greater effort. Energy may be a useful indicator of an individual's current state and ability to sustain activities that supports their well-being, such as exercise. Awareness of the elements of achieving balance in axSpA may enable patients and clinicians to work together to tailor treatments to individual patient need.

Protective role of humoral immune responses during an outbreak of hepatitis E in Egypt.

Although the seroprevalence of hepatitis E virus (HEV) is approximately 80% in adult Egyptians living in rural areas, symptomatic HEV-caused acute viral hepatitis (AVH) is sporadic and relatively uncommon. To investigate the dichotomy between HEV infection and clinical AVH, HEV-specific immune responses in patients with symptomatic and asymptomatic HEV infection during a waterborne outbreak in Egypt were examined. Of 235 acute hepatitis patients in Assiut hospitals screened for HEV infection, 42 (17.9%) were acute hepatitis patients confirmed as HEV-caused AVH; 37 (88%) of the 42 patients were residents of rural areas, and 14 (33%) were from one village (Kom El-Mansoura). Another 200 contacts of AVH cases in this village were screened for HEV and 14 (7.0%), all of whom were family members of AVH cases, were asymptomatic HEV IgM-positive. HEV infections in this village peaked during the summer. Asymptomatic HEV seroconverters had significantly higher levels of epitope-specific neutralising (p=0.006) and high avidity (p=0.04) anti-HEV antibodies than the corresponding AVH cases. In conclusion, naturally acquired humoral immune responses appear to protect HEV-exposed subjects from AVH during an HEV outbreak in Egypt.

Prospective study of cross-infection from upper-GI endoscopy in a hepatitis C-prevalent population.

BACKGROUND: A high prevalence of hepatitis C (HCV) in the Egyptian Nile Delta increases the demand for upper-GI endoscopy (UGIE) and the risk of cross-infection with this virus. OBJECTIVE: To assess the potential for UGIE to transmit HCV when endoscopes are reprocessed according to current international standards. DESIGN: A prospective cohort study to detect the incidence of HCV and hepatitis B cross-infections. SETTING: The endoscopic unit of the National Liver Institute, a hospital for patients with chronic liver disease. PATIENTS: A total of 859, including 149 of 249 patients (60%) at risk (HCV-antibody negative) retested 3 to 10 months after UGIE with endoscopes previously used on HCV carriers. INTERVENTIONS: Nurses were trained to process endoscopes according to American Society for Gastrointestinal Endoscopy guidelines, and procedures were observed and recorded. MAIN OUTCOME MEASUREMENTS: Seroconversions were determined by using enzyme immunoassays for anti-HCV; reverse transcriptase-polymerase chain reaction was used to detect HCV-ribonucleic acid (RNA). RESULTS: Four patients, initially negative, tested positive for anti-HCV after UGIE. However, 2 of these had HCV-RNA in their baseline blood sample, and the other 2 did not have HCV-RNA in their follow-up sample. LIMITATIONS: Very-high prevalence of anti-HCV in subjects reduced the proportion at risk of infection, and follow-up was difficult. CONCLUSIONS: There were no cases of proven transmission of HCV when endoscopes were reprocessed by using currently accepted standards. This negative study is encouraging, because patients undergoing UGIE in the Nile Delta of Egypt where HCV-caused liver disease is so pervasive would be at maximum risk of HCV cross-infection from UGIE.

Integrating Chinese traditional medicine into a U.S. public health paradigm.

Chinese traditional medicine (CTM) is a health care system with an extensive history of practical clinical experience. The foundation of CTM, while relatively simple, is substantively different from much of allopathic medicine. Such differences are difficult to explain using a Western medical vocabulary, and extend beyond linguistic foundations. This proves challenging when trying to identify appropriate teaching and research methods that are sensitive to the CTM paradigm and yet relevant to a public health orientation. Given the increased use of CTM, it becomes important to address possibilities that would ensure successful integration of CTM into a public health framework. We propose a model in which both CTM and biomedical clinical services could be offered to provide diverse, yet truly integrative, therapeutic approaches. Within this model, it is critical to enhance reciprocal educational and research-directed opportunities for both CTM practitioners and allopathic clinicians. Considerable responsibility rests upon academic institutions in becoming proactive in developing and implementing educational curricula and research programs that illustrate more effectively the potential bilateral benefit(s), limitations, and, ultimately, roles that CTM and biomedical approaches may assume within an integrative system of care.