The patient
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Multicenter Study
Psychometric evaluation of the Cushing's Quality-of-Life questionnaire.
Cushing's disease (CD) is a rare disorder of chronic hypercortisolism due to an adrenocorticotropic hormone (ACTH)-secreting pituitary corticotroph adenoma. Because hypercortisolism symptoms are wide ranging, it is important to assess a variety of outcomes including both clinical factors, such as cortisol levels, and health-related quality of life (HR-QOL), to better understand the severity and impact of CD on patients and the potential efficacy of CD treatment. Pasireotide, a somatostatin analog that targets somatostatin receptors on the pituitary adenoma, is under development as a treatment for CD. A phase III clinical trial was conducted to investigate its safety and efficacy in patients with CD. In this trial, HR-QOL was assessed with the Cushing's Quality-of-Life (CushingQOL) questionnaire, specifically developed and validated in patients with Cushing's syndrome. ⋯ This study provided evidence within the context of a longitudinal design that the CushingQOL questionnaire is a reliable, valid, and responsive instrument for the assessment of HR-QOL in adults with CD in accordance with recommendations set forth by regulatory agencies in the USA and Europe.
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Trusting relationships between mental health consumers and health care providers are critical in the management and recovery process. Although community pharmacy staff are well placed to form relationships with mental health consumers and carers, little is known about the existence, nature or significance of consumer-staff relationships. ⋯ Trusting relationships between consumers and carers and community pharmacy staff were deemed to be important in mental health care and contributed to consumers' and carers' views of pharmacy as a safe health care space. Community pharmacy services that included core elements of patient-centred care appeared to facilitate relationship formation and associated benefits. Education and training is needed for community pharmacy staff to improve mental health knowledge and promote positive engagement with consumers and carers.
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Hepatitis C virus (HCV) antiviral therapy entails a long treatment course, as well as significant side effects that can lead to medication non-adherence and premature termination of treatment. Few large studies have comprehensively examined patient perspectives on the treatment experience, particularly the social and personal effects. ⋯ Patient perspectives can help formulate and refine HCV treatment support programs. Effective support programs for diverse populations are crucial as the complexities and costs of HCV treatment increase. The call for greater support from peers, providers, and employers demands new systems such as patient-centered care teams.
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Chronic low back pain (CLBP) is the most common chronic pain condition and is associated with clinical, economic, social, and public health impacts. The effect of CLBP on patients' health-related quality of life (HRQoL) is significant. The symptoms and impacts most often associated with CLBP include pain and disability; patients most affected are often crippled by the condition. CLBP also affects patients' mental, physical, and psychosocial well-being. A variety of self-report measures have been developed for the assessment of CLBP, such as the Roland Morris Disability Questionnaire (RMDQ); however, existing measures may not meet current regulatory expectation for the development, documentation, and use of patient-reported outcomes (PRO) questionnaires (U.S. Department of Health and Human Services, Food and Drug Administration, 2009). ⋯ The CLBP-IQ was developed in accordance with current US Food and Drug Administration guidance on instrument development. Results from both concept elicitation and cognitive debriefing interviews support the content validity of the CLBP-IQ in patients with CLBP. Future development should proceed with psychometric evaluation.
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To validate a widely used health outcomes instrument for patients with chronic kidney disease and on dialysis, the Kidney Disease Quality of Life questionnaire (KDQOL-36), in English-speaking haemodialysis patients in Singapore. ⋯ The English version of the KDQOL-36 appears to be reliable and valid to measure quality of life for haemodialysis patients in Singapore.