Exploring the Burden of X-Linked Hypophosphataemia: An Opportunistic Qualitative Study of Patient Statements Generated During a Technology Appraisal.

Introduction: Capturing the patient experience of living with a rare disease such as X-linked hypophosphataemia (XLH) is critical for a holistic understanding of the burden of a disease. The complexity of the disease coupled with the limited population makes elicitation of the patient burden methodologically challenging. This study used qualitative information direct from patient and caregiver statements to assess the burden of XLH.

Psychometric development of the Upper Limb Lymphedema Quality of Life Questionnaire demonstrated the patient-reported outcome measure to be a robust measure for breast cancer-related lymphedema.

Objectives: To develop and undertake initial validation of a patient-reported outcome measure to assess health-related quality of life in patients with breast cancer-related upper limb lymphedema (ULL).

Study Design And Setting: We developed and validated the Upper Limb Lymphedema Quality of Life (ULLQoL) scale in two stages: devising the items and pretesting with patients and clinicians; longitudinal validation to test its psychometric properties-underlying dimensions, internal consistency, test-retest reliability, construct validity, and responsiveness. Patients with ULL were recruited from two outpatient clinics.

Symptoms and Association with Health Outcomes in Relapsing-Remitting Multiple Sclerosis: Results of a US Patient Survey.

Background. A variety of symptoms have been reported, but the prevalence of specific symptoms in relapsing-remitting multiple sclerosis (RRMS), how they are related to one another, and their impact on patient reported outcomes is not well understood. Objective.

Long-term disease history, clinical symptoms, health status, and healthcare utilization in patients suffering from Lambert Eaton myasthenic syndrome: Results of a patient interview survey in Germany.

Introduction: The burden of disease in Lambert-Eaton myasthenic syndrome (LEMS) patients is unclear. This study focused on the patient's perspective to obtain patient-reported information on clinical symptoms, burden of illness, impact of LEMS on activities of daily living (ADL), and management of LEMS.

Methods: Semi-structured, face-to-face interviews with LEMS patients from two specialized centres in Germany between September and December 2010.

Inhaled corticosteroids for asthma: impact of practice level device switching on asthma control.

Background: As more inhaled corticosteroid (ICS) devices become available, there may be pressure for health-care providers to switch patients with asthma to cheaper inhaler devices. Our objective was to evaluate impact on asthma control of inhaler device switching without an accompanying consultation in general practice.

Methods: This 2-year retrospective matched cohort study used the UK General Practice Research Database to identify practices where ICS devices were changed without a consultation for > or =5 patients within 3 months.

How does patients' quality of life guide their preferences regarding aspects of asthma therapy?: a patient-preference study using discrete-choice experiment methodology.

Background And Objective: Previous work has suggested that people with poor health-related quality of life (HR-QOL) as a result of asthma are willing to pay the most for successful therapy. There is also evidence that preferences are an important influence on adherence to therapy. We report a patient preference study using a discrete-choice experiment (DCE) to elicit willingness to pay (WTP) of patients with asthma in Spain, the Netherlands, and the UK.

Comparison of the clinical efficacy and safety of salmeterol/fluticasone propionate versus current care in the management of persistent asthma in Korea.

Objectives: In the Asia-Pacific region there is a general preference for prescribing oral over inhaled medications for the treatment of asthma. This study compared inhaled salmeterol/fluticasone propionate therapy (SFC) with physician-determined current care (CC) in the management of persistent asthma in Korea.

Methods: Adult patients with a documented history of reversibility in FEV(1) (>or= 12%) or PEF (>or= 15%), were randomised in a 2:1 ratio to unblinded treatment with SFC (50/250 microg bd or 50/500 microg bd) via Diskus (N = 284) or CC (N = 140) for 52 weeks.

Salmeterol/fluticasone stable-dose treatment compared with formoterol/budesonide adjustable maintenance dosing: impact on health-related quality of life.

Background: Improving patients' health-related quality of life (HRQoL) is recognized as a fundamental part of asthma management. The aims of this study were to evaluate the long-term efficacy (including symptom-free days and exacerbations) and impact on HRQoL of a stable-dose regimen of salmeterol/fluticasone propionate (SAL/FP) and an adjustable maintenance dosing (AMD) regimen of formoterol/budesonide (FOR/BUD) where treatment is adjusted based on symptoms [SAM40056].

Methods: A total of 688 outpatients with asthma receiving regular low-dose inhaled corticosteroids (ICS) plus a long-acting beta2-agonist, or medium dose ICS alone participated in this randomized, double-blind, double-dummy, parallel-group, 1-year trial, which was conducted in 91 centers in 15 countries.

Survey of pharmacists' attitudes towards interchangeable use of dry powder inhalers.

Background: It is a common cost-containment practice in some countries to dispense a cheaper, generic version of a prescribed medication. This presents few problems for most medications. However, dry powder inhalers used in asthma and COPD vary markedly in design and method of operation, so generic substitution may not be acceptable to patients or healthcare professionals.

Defining COPD exacerbations: impact on estimation of incidence and burden in primary care.

Aims: To investigate the impact of definition on the incidence of chronic obstructive pulmonary disease (COPD) exacerbations in primary care.

Methods: In a one-year prospective, observational study, data from diary cards were used to determine the incidence of symptom- and healthcare-defined exacerbations. One hundred and twenty seven patients completed > or =80% of days in the diary card and were included in the analysis.