The impact of current healthrelated quality of li

Authors: Barbara Sokołowska Wojciech Szczeklik Olga Piłat Michał Wodkowski Justyna Pieczątka Jolanta Gąsior Katarzyna Szczeklik Anna Włudarczyk Karolina Pacułt Jacek Musiał

Publish Date: 2013/01/18

Volume: 32, Issue: 6, Pages: 779-785

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Abstract

Eosinophilic granulomatosis with polyangiitis EGPA is a rare autoimmune small and medium vessel vasculitis EGPA is accompanied by asthma and involves mainly the blood vessels of the lungs gastrointestinal system and peripheral nerves however the skin kidneys and heart may be also affected To investigate if patients with EGPA experience reduced healthrelated quality of life HRQOL and the effect of this parameter on their own perception of future health outlook Twentysix EGPA patients are in disease remission and completed a customdesigned questionnaire and the Medical Outcomes Study Short Form 36 SF36 Using the RAND method eight HRQOL dimensions were calculated general health physical functioning emotional role limitations physical role limitations social functioning mental health bodily pain and vitality Using normbased scores the HRQOL of patients was compared with that of the general population EGPA patients had decreased HRQOL across all eight dimensions of the SF36 Patients with higher mental component score felt more positive about their future health while patients with low physical component score were likely not to feel negatively about their future health Also 36  of older patients 50 years had a positive outlook compared to 47  of younger patients 50 years and patients with a longer disease course were much less likely to have a positive outlook 30  positive than those with a shorter course 50  positive Although not statistically significant these correlations warrant further investigation with a larger patient population Despite being in disease remission EGPA patients had decreased quality of life which in turn influenced their perception of their future health outlookEosinophilic granulomatosis with polyangiitis EGPA previously known as Churg–Strauss syndrome is a noninheritable and nontransmissible disease affecting medium and small vessels It is an autoimmune vasculitis leading to tissue necrosis with eosinophilia and eosinophil tissue infiltration 1 EGPA is accompanied by asthma and involves mainly the blood vessels of the lungs gastrointestinal system and peripheral nerves however other organs such as skin kidneys and most notably the heart may also be affected 2 3 Over the years the prognosis for EGPA patients has improved tremendously After the introduction of corticosteroids into therapy 5year mortality rates have decreased to 139  from previously reported 3month rates of approximately 50  4 5 It can be safely said that over the last decade EGPA has been reduced to a chronic relapsing disease usually requiring indefinite medication and periodic followup The question thus arises whether this improvement has had a proportionally positive impact on the quality of life in these patients Additionally the understanding of the term “health” has also changed dramatically during this time and—unsurprisingly—patients’ expectations have evolved correspondingly In fact many of them expect not only to be physically and emotionally healthy but to also enjoy a quality of life similar to that of people unaffected by diseaseQuality of life is defined as an individual’s 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 6 Measurement of such a relative parameter is challenging Standardized methods such as the healthrelated quality of life HRQOL Short Form 36 SF36 have become a useful tool in measuring the quality of life of distinct patient populations and comparing it to healthy populations at one moment in time It is also used to monitor the impact of novel treatments methods on the quality of life over a prolonged period of time 7 The additional advantage of using such tools is that they provide a uniform platform which facilitates the comparison of quality of life measurements across similar types of diseases 8Although SF36 has been used in patients with many autoimmune diseases such as granulomatosis with polyangitiis disease GPA Wegener’s granulomatosis 9 systemic lupus erythematosus 10 newly diagnosed antineutrophil cytoplasmic antibody ANCAassociated vasculitis 8 there has been no study using this method that focuses solely on patients with eosinophilic granulomatosis with polyangiitis EGPA patients suffer from a unique set of symptoms that affect their daily lives in ways different from other vasculitic diseases This is partially due to the considerable burden that asthma places on patient’s daily living activities especially before a diagnosis is made 11 Another question that has not been addressed is how patients’ feel about their perceived future health outlook an important yet rarely considered outcome measure 12 and what factors influence this perceptionThese reasons prompted the investigation of whether current quality of life in EGPA patients exerts any influence on their future health outlook Several other significant factors such as gender employment and duration of disease were also screened for correlation with future health outlookMedical records from the Outpatient Allergy and Immunology Clinic of the Jagiellonian University Hospital in Cracow Poland were searched to identify patients with EGPA The diagnosis was verified before enrollment in all patients included in this study As no diagnostic criteria are available for EGPA the American College of Rheumatology ACR classification criteria were used 13 They are the most widely accepted criteria in this condition They distinguish six key features of the disease among them asthma peripheral blood eosinophilia of 10  mono or polyneuropathy paranasal sinus abnormality eosinophilic accumulation in tissues confirmed by a biopsy and migratory infiltrates in lungs At least four of the criteria listed above had to be confirmed in order to validate the diagnosis A custom questionnaire regarding current symptoms current medication regimen and employment history Short Form 36 Health Survey QualityMetrics v 2 as well as future health outlook were included in the survey package The Short Form 36 Health Survey a standardized questionnaire is used to compile two key parameters a mental component score MCS and a physical component score PCS An absolute score 0–100 was obtained for each parameter Using the RAND method a total of eight HRQOL dimensions were measured general health GH physical functioning PF emotional role limitations RE physical role limitations RP social functioning SF mental health MH bodily pain BP and vitality VT A score of 50 was judged to be equivalent to the general population while scores above or below this threshold indicated that a corresponding difference from the normal population was present Using normbased scores we compared the HRQOL of patients with a sample from a general population Patients were also asked to assess how they currently perceive their personal future health outlook as one of three options positive negative or unchanged The available medical documentation and survey data were used to analyze the disease course and evaluate its activity by the Birmingham Vasculitis Activity Score BVAS score BVAS v3 range 0–56 patients available at http//wwwvasculitisorg/diseasehtm 14 Patients with BVAS 2 were assumed to be in disease remission and included to the study The survey packages were mailed to personal home addresses with return postage paid All subjects gave informed consent to participate prior to inclusion in the study Patients answered the survey and mailed it back to the hospital The study protocol complied with the Helsinki Declaration and was approved by the Jagiellonian University Ethics CommitteeStatistical analysis was performed using Statistica Statsoft v100 software Descriptive statistical analyses were performed for all Ninetyfive percent confidence intervals were also calculated on the basis of the Poisson distribution The distributions of the response variables were checked for normality and transformations were performed as appropriate When the pattern of the results observed using the transformed scores was similar to the results obtained from the raw data analysis the raw data analysis is presented if different we report the results obtained using the transformed scores Nonparametric tests were used as appropriate where the normality assumptions could not be met The data were analyzed using Mann–Whitney U tests and Fisher’s test p values less than 005 were considered as statistically significant

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