Publications by authors named "H L MAKIN"

Background: Dermatomyositis (DM) is a rare and severely debilitating autoimmune disease that can affect children and adults; however, there is little understanding of the patient-reported experience and uncertainty around validated clinical outcomes assessments (COAs) that could measure changes in the condition during clinical trials of new treatments.

Objectives: The aim of this study was to understand the patient experience of DM, with a focus on its cutaneous manifestations, to describe the patient experience and determine the suitability of existing COA measures.

Methods: Adult (≥ 18 years) patients (N = 28) with severe active cutaneous manifestations of DM were interviewed.

View Article and Find Full Text PDF

Introduction: Understanding the patient journey of hepatocellular carcinoma (HCC) may inform future clinical decision-making and enhance the patient experience. The objectives of this study were to explore the patient experience of HCC in relation to treatment options, treatment decision-making and treatment goals throughout the disease journey. This study also aimed to determine the symptoms and impacts of HCC across early, intermediate and advanced HCC.

View Article and Find Full Text PDF

Introduction: Dermatomyositis (DM) is a rare systemic autoimmune disease characterized by a distinctive debilitating skin rash and skeletal muscle weakness. It is unclear if existing clinical outcome assessment (COA) measures include the concepts of priority to patients and those necessary to fully capture improvements in the active cutaneous manifestations of DM. This study aimed to develop the Cutaneous Dermatomyositis Investigator Global Assessment (CDM-IGA), a de novo IGA, for use in clinical trials of adult DM.

View Article and Find Full Text PDF

Introduction: Individuals with a severe mental illness (SMI) are more likely to drink at harmful levels or abstain. While it is known that drinking patterns change over time, the reasons for this among those with a SMI are unclear. This study aimed to (i) explore the experiences with alcohol, particularly in relation to mental health symptoms, and (ii) how drinking patterns have changed over time, among individuals who have a SMI diagnosis, who either currently drink alcohol or no longer drink.

View Article and Find Full Text PDF

Objectives: While the assessment of actual food intake is essential in the evaluation of behaviour change interventions for weight-loss, it may not always be feasible to collect this information within traditional experimental paradigms. For this reason, measures of food preference (such as measures of food value and choice) are often used as more accessible alternatives. However, the predictive validity of these measures (in relation to subsequent food consumption) has not yet been studied.

View Article and Find Full Text PDF