ABSTRACT
BACKGROUND: Early cancer recognition is key to improving patient outcomes. Diagnosis is often delayed in myeloproliferative neoplasm (MPN) patients, putting them at risk of thromboembolic events and other complications pre-diagnosis. A clear understanding of the barriers to presentation and diagnosis is required. AIMS: To explore barriers and factors influencing delayed presentation and diagnosis of MPNs. DESIGN & SETTING: A cross-sectional study of MPN patients within the United Kingdom and the Republic of Ireland. METHOD: An online cross-sectional survey of MPN patients. Symptoms and factors influencing patient and General Practitioner (GP) delay were examined. Adjusted odds ratios (aOR) were calculated to explore the relationship between these factors and patient/GP delay. RESULTS: Most (80.2%) of the 620 patients completing the survey reported symptomatic presentation. The most common symptoms associated with patient delay were pruritus (aOR 1.89, 95% CI 1.19-3.01), headaches (aOR 1.86, 95% CI 1.13-2.82) and concentration difficulties (aOR 1.75, 95% CI 1.12-2.76). Attributing symptoms to ageing (aOR 1.92, 95% CI 1.19-3.11) and not wanting to burden the GP (aOR 2.17, 95% CI 1.35-3.50) were significantly associated with patient delay. Those reporting >3 blood cancer warning signs were more likely to experience GP delay than those experiencing fewer (aOR 3.26, 95% CI 1.75-6.29), and lack of relational continuity of GP care was significantly associated with GP delay (aOR 3.41, 95% CI 1.65-7.28). CONCLUSION: Debunking misconceptions around ageing, encouraging timely communication with GPs and improving relational continuity of GP care could assist in reducing diagnostic delays, prevent potentially fatal disease complications and ultimately improve MPN patient outcomes.
ABSTRACT
Vision loss has been associated with mental health problems such as depression, anxiety, and post-traumatic stress disorder, which significantly impact lives of working age adults with adventitious total bilateral blindness and low vision. It is imperative, therefore, to prioritize the mental health in this population by exploring and understanding the factors that impact on their mental health. Hence, the objective of this scoping review is to identify and chart existing literature on the protective and risk factors of mental health of working age adults with adventitious total bilateral blindness and low vision. We developed this scoping review protocol in line with the Joanna Briggs Institute guidance. This scoping review will include publications in English language with no date restrictions exploring the protective and risk factors of mental health of our study population. A three-step search strategy will be employed. Searches will be carried out in the following databases: Medline, Embase, PsycInfo, PsycArticles, CINAHL and Web of Science. Search for grey literature will be conducted in Google, Google Scholar and Websites dedicated to information on visual impairment. Collated results will be imported into Endnote Basic (Clarivate) for deduplication. Two reviewers will independently conduct double screening of all the titles and abstracts in Rayyan- a web application, and full texts in Endnote while three other reviewers will conduct screening of a subset of for example 10% of titles and abstracts and full texts. Furthermore, two reviewers will independently conduct double data extraction while three other reviewers will revise, cross check, and correct any extraction errors. Extracted data will be presented in tabular formats and summarized descriptively in line with the research objectives. This scoping review will generate evidence on factors impacting the mental health of the working age adults with adventitious total bilateral blindness and low vision as well as critically highlight gaps in the literature. The findings will inform and critically underpin future empirical research which will explore the lived experiences of working age people with adventitious total bilateral blindness. Additionally, evidence from this review will inform the development of interventions in the promotion of mental health as well as assisting rehabilitation specialists and workers, public health practitioners and other relevant stakeholders in addressing the mental health needs of working age adults with adventitious total bilateral blindness and low vision.
Subject(s)
Vision, Low , Adult , Humans , Mental Health , Blindness/epidemiology , Blindness/etiology , Blindness/prevention & control , Risk Factors , Academies and Institutes , Review Literature as TopicABSTRACT
BACKGROUND: Myeloproliferative neoplasms (MPNs) are a group of haematological malignancies that affect approximately 8 people in every 100,000 individuals in the UK. Little is known about the aetiology of MPNs, as previous studies have been hampered by small sample sizes, thus it is important to understand the cause of MPNs in a larger study to identify prevention strategies and improve treatment strategies. This study aims to determine environmental, lifestyle, genetic and medical causes of MPNs and to assess the relevance of occupational carcinogen exposures and quality of life impacts. METHODS: A UK-wide case-control study of 610 recently diagnosed MPN patients (within 24 months) receiving clinical care at 21 NHS study sites in Scotland, England, Wales and Northern Ireland and 610 non-blood relative/friend controls is underway. Data on occupational and residential history, medical and environmental factors, and quality of life are being collected from the participants via a structured interview and self-complete questionnaires. Clinical data is being provided by the clinical team. Blood, saliva and toenail samples are also being collected for genetic and elemental analysis. Adjusted odds ratios (ORs) and 95% confidence intervals (95%CI) will be calculated using a p < 0.05 to investigate potential risk factors for the MPN clinical and genetic subtypes, and further analyses will be conducted based on the type of data and outcome of interest at a later stage. DISCUSSION: The study design is most effective for investigating the aetiology of rare diseases. The study will enable identification of potential causes of MPNs through in-depth assessment of potential risk factors with potential for longer follow-up of a number of outcomes.