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Quality of life tools reflect disease severity but can they be improved?

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Chronic venous disease (CVD) encompasses a spectrum of clinical presentations, with severity increasing from telangiectasia to varicose veins (VVs), oedema, skin changes and venous ulceration. While presentations differ, a constant… Click to show full abstract

Chronic venous disease (CVD) encompasses a spectrum of clinical presentations, with severity increasing from telangiectasia to varicose veins (VVs), oedema, skin changes and venous ulceration. While presentations differ, a constant outcome remains, namely, an impact on patients’ health-related quality of life (HRQoL), defined by the World Health Organisation as “individuals’ perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns”. This concept is enshrined in clinical guidelines, both to reflect effectiveness of intervention from a patient perspective and to assess cost-effectiveness using quality adjusted life years (QALYs) estimated from HRQoL score improvements. Multiple HRQoL tools exist. Generic tools, such as the EuroQoL-5D, contain multidimensional questions assessing biopsychosocial functioning together with overall perceptions of health. While applicable to various diseases, their broad nature precludes identification of condition-specific attributes. Conversely, disease-specific tools may be employed to explore issues unique to named conditions; commonly employed CVD-specific tools include the Aberdeen Varicose Vein Questionnaire (AVVQ), Chronic Venous Insufficiency Quality of Life Questionnaire (CIVIQ) and VEnous INsufficiency Epidemiological And Economic Study-QoL/Symptoms (VEINESQoL/Sym). Criteria established in an evaluation of patientreported outcome measures (PROMs) have been used to validate CVD-specific tools, which largely support the use of the commoner tools listed above. However, a review reported scarcity of validation studies, with only the AVVQ, CIVIQ and VEINES-QoL/ Sym considered thoroughly validated. This is despite the AVVQ and CIVIQ having only ever been validated by their creators, with further linguistic validation only. This leads to some concerns. Firstly, validation studies published solely by the creators lead to questions regarding bias. Secondly, even if no partiality exists, the validation studies are limited to local populations; these tools have been applied to international populations despite questionable generalisability. Finally, the paucity of validation studies for other existing tools raises the question of whether tools have been created sequentially despite unsubstantiated needs. Despite these potential issues, studies have established that these commonly used tools correlate with clinical severity assessed using the Venous Clinical Severity Score and CEAP classification. However, with nine items in the AVVQ focusing on symptoms and signs, correlation with clinical severity is not surprising. While this relationship is less uncertain for the CIVIQ with a single question on symptoms, the VEINES-QoL/Sym, with nine of the 26 items focusing on symptoms, may face the same pitfalls as the AVVQ. Furthermore, given the multidimensionality of HRQoL, unidimensional correlation with severity is clearly insufficient. Tools should holistically evaluate the biopsychosocial issues experienced by patients. A good balance of questions has to be achieved, preferably weighted to best reflect each domain’s impact, but these weightages differ markedly for current tools. The AVVQ focuses greatly on the physical effects of VVs, while the CIVIQ emphasises more on the psychosocial domains in C0–4 disease. The VEINES-QoL/Sym shows further generalisation, covering broad CVD related domains, but this generalisability causes insensitivity to symptomology changes in VVs. There may be no agreement to which weightage works best as the importance of each domain can vary between patients. There may be a role for individualisation of HRQoL scores, with importance of each domain determined independently for individual patients, or for preferential use of HRQoL tools for specific outcomes.

Keywords: validation studies; disease; severity; quality life; life

Journal Title: Phlebology
Year Published: 2019

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