-
Article
Open AccessAssociations between Health-Related Quality of Life and Self-Reported Emergency Room Department Visits and Inpatient Hospitalizations: Insights from a Secondary Data Analysis of Patients with Light-Chain (AL) Amyloidosis
Light-chain (AL) amyloidosis is a rare, progressive, and typically fatal disease. Health-related quality of life (HRQoL) has been shown to be a significant prognostic factor associated with clinical outcomes s...
-
Article
Open AccessPatient-reported treatment-related symptom burden for patients with advanced melanoma in Canada
Little is known on the impact of emerging treatments for advanced melanoma (stages III and IV) on patients’ functioning and well-being. The objective of this study was to describe the patient-reported treatmen...
-
Article
Open AccessPsychometric validation of the work productivity and activity impairment questionnaire in ulcerative colitis: results from a systematic literature review
Patients with ulcerative colitis, a type of inflammatory bowel disease, report negative impacts of disease symptoms on work-related outcomes, including absenteeism and presenteeism. As a way to better understa...
-
Article
Open AccessHumanistic burden of disease for patients with advanced melanoma in Canada
Metastatic melanoma is a highly aggressive cancer, often striking in the prime of life. This study provides new information directly from advanced melanoma (stage III and IV) patients on how their disease impa...
-
Article
Open AccessLight Chain (AL) Amyloidosis: The Journey to Diagnosis
Light chain (AL) amyloidosis is a rare, complex disease associated with significant morbidity and mortality. Delays in diagnosis are common and may have detrimental consequences on patients’ prognosis. Too lit...
-
Article
Open AccessContent validation of the SF-36v2® health survey with AL amyloidosis patients
This study examined the content validity of the SF-36v2® Health Survey (SF-36v2) in patients with AL amyloidosis using qualitative interviews with physicians and patients. The study included three distinct pha...
-
Article
Open AccessEffect of ivacaftor treatment in patients with cystic fibrosis and the G551D-CFTR mutation: patient-reported outcomes in the STRIVE randomized, controlled trial
Cystic fibrosis (CF) is an inherited, rare autosomal recessive disease that results in chronically debilitating morbidities and high premature mortality. We evaluated how ivacaftor treatment affected CF sympto...
-
Article
Open AccessMeasurement properties of the Flu-Like Symptom Index from the Hepatitis Physical Symptom Severity Diary
Chronic Hepatitis C (CHC) Virus infection is a serious health issue in the US. Standard treatment involves peginterferon alpha and ribavirin, often associated with adverse side effects including flu-like symp...
-
Article
Open AccessThe impact of itch symptoms in psoriasis: results from physician interviews and patient focus groups
The objective of this qualitative study was to better understand the impact of psoriasis symptoms using a 3-part process: 1) develop a disease model for psoriasis to identify the most important concepts releva...
-
Article
Open AccessPredicting declines in physical function in persons with multiple chronic medical conditions: What we can learn from the medical problem list
Primary care physicians are caring for increasing numbers of persons with comorbid chronic illness. Longitudinal information on health outcomes associated with specific chronic conditions may be particularly r...
-
Article
Applications of computerized adaptive testing (CAT) to the assessment of headache impact
Objective: To evaluate the feasibility of computerized adaptive testing (CAT) and the reliability and validity of CAT-based estimates of headache impact scores in comparison with 'static' surveys. Methods: Respo...
-
Article
Usefulness of the SF-8™ Health Survey for comparing the impact of migraine and other conditions
Background: Migraine headaches have been shown to have substantial personal and societal implications. Health-related quality of life (HRQOL) assessments of migraineurs have been used to monitor and evaluate pat...
-
Article
A new tool for monitoring asthma outcomes: The ITG Asthma Short Form
Background: Asthma treatment has broadened from managing clinical markers to incorporate factors that are most meaningful to patients, collectively called health-related quality of life (HQL). Objective: To deve...
-
Article
A questionnaire to assess the generic and disease-specific health outcomes of patients with chronic hepatitis C
A 69-item questionnaire measuring generic functioning and well-being and disease-specific health outcomes was developed and tested using the pre-treatment data from patients with chronic hepatitis C (CHC) part...
