Developing a patient-centred outcome measure for patients suffering with pernicious anaemia
type: CreativeWork
description: Background: Pernicious Anemia (PA) is a potentially serious medical condition with a complex symptom profile that is under researched in the scientific literature. There is little consensus regarding its diagnosis, and individual differences in symptom perception and treatment expectation and outcome suggest the centrality of psychological factors in managing this condition. Health-related quality of life (HRQoL) has been suggested as an important health indicator in clinical outcomes in terms of determining the impact of illness on daily functioning, and subsequently informing health interventions. Given the absence of objective markers of patients’ experience, the current thesis describes the development of a patient-centred measure for the identification and management of health-related quality of life in patients diagnosed with pernicious anaemia (PA-HRQoL), informed by the findings of four exploratory studies. The findings of these studies are supported by empirical evidence and provide rich information that reflect the burden of PA on individuals’ quality of life. Methods study 1: Study 1 reflected an audit of patients’ records, aimed to establish the parameters for the focus of the instrument development through investigating the progression of patients from diagnosis through treatment and management of this condition. Data was collected on all PA cases (N=257, 189 females, 68 males, age range 25-97 years old, Mean age= 65, SD=17) in a pilot GP practice. Information recorded included demographics, symptoms, co-morbidities and treatment frequency. Findings study 1: Results from this audit exercise indicated that specific tests carried out to diagnose PA (IFAB and GPC) were only requested for a small proportion of the sample. In some cases, discrepancies were noted regarding the outcome of these tests and an accurate PA diagnosis. Despite negative test results, some patients were diagnosed with PA, which may imply inconsistencies in the way PA is managed. Patie…
abstract: Background: Pernicious Anemia (PA) is a potentially serious medical condition with a complex symptom profile that is under researched in the scientific literature. There is little consensus regarding its diagnosis, and individual differences in symptom perception and treatment expectation and outcome suggest the centrality of psychological factors in managing this condition. Health-related quality of life (HRQoL) has been suggested as an important health indicator in clinical outcomes in terms of determining the impact of illness on daily functioning, and subsequently informing health interventions. Given the absence of objective markers of patients’ experience, the current thesis describes the development of a patient-centred measure for the identification and management of health-related quality of life in patients diagnosed with pernicious anaemia (PA-HRQoL), informed by the findings of four exploratory studies. The findings of these studies are supported by empirical evidence and provide rich information that reflect the burden of PA on individuals’ quality of life. Methods study 1: Study 1 reflected an audit of patients’ records, aimed to establish the parameters for the focus of the instrument development through investigating the progression of patients from diagnosis through treatment and management of this condition. Data was collected on all PA cases (N=257, 189 females, 68 males, age range 25-97 years old, Mean age= 65, SD=17) in a pilot GP practice. Information recorded included demographics, symptoms, co-morbidities and treatment frequency. Findings study 1: Results from this audit exercise indicated that specific tests carried out to diagnose PA (IFAB and GPC) were only requested for a small proportion of the sample. In some cases, discrepancies were noted regarding the outcome of these tests and an accurate PA diagnosis. Despite negative test results, some patients were diagnosed with PA, which may imply inconsistencies in the way PA is managed. Patie…
author: Semedo, Lenira
language: eng
keywords: Pernicious Anaemia, health-related quality of life, outcome, treatment control
date published: 2018-3
date modified: 2026-07-24T04:39:25Z
provider: University of South Wales
publisher: Networked Digital Library of Theses and Dissertations
type: WebPage
source organization: University of South Wales