Developing a patient-centred outcome measure for PA patients
Research type
Research Study
Full title
Developing a patient-centred outcome measure for the identification and management of health related quality of life in patients suffering with Pernicious Anaemia
IRAS ID
181272
Contact name
Lenira Semedo
Contact email
Sponsor organisation
University of South Wales
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
Pernicious Anaemia (PA) is an under-researched chronic condition defined as a common cause of Vitamin B12 deficiency, having serious implications for sufferers and medical management. A patient-centred outcome measure for the identification and management of health related quality of life in patients diagnosed with PA would provide clinicians with accurate indicators of individual patient needs. Patients experience a range of symptoms with differing degrees of severity including extreme tiredness, pins and needles and gait disturbances. Psychological symptoms include depression, negative affect, cognitive problems and inability to cope with daily living.Patients require lifelong therapy with intramuscular vitamin B12 every three months ( WHO recommendation), however don't seem to benefit from more frequent injections. Despite this, patients vary in their responses to B12 therapy and significant numbers request more frequent treatment to alleviate perceived symptoms and maintain what they perceive as being an acceptable quality of life.This represents a dilemma for medical practitioners, as patients feel that GPs are reluctant to administer treatment, whereas GPs are concerned with early medicalisation when there is no demonstrated physical benefit.Given the lack of objective tests to assess the severity of patients’ symptoms and response to treatment, it is anticipated that this tool may be of great benefit for PA sufferers in terms of improving PA management, therefore resulting in the improvement of individuals' quality of life. The present research arises from a collaborative project between the University of South Wales Psychology team and the Haematology and Health Psychology departments in the ABMU Local Health Board. Thus, patient access will be facilitated through participating local GP surgeries.The present study will employ a cross-sectional survey design as the basis for data gathering and subsequent development/implementation of a valid and reliable brief screening/outcome measure for patients suffering with PA.
REC name
North West - Preston Research Ethics Committee
REC reference
16/NW/0582
Date of REC Opinion
5 Aug 2016
REC opinion
Further Information Favourable Opinion