Dataset Information

Preference-based measure of health-related quality of life and its determinants in sickle cell disease in Nigeria.

ABSTRACT:

Background

Health-related quality of life (HRQL) and economic burden are important issues for people with sickle cell disease (SCD) owing to better survival due to medical advances. Preference-based or utility information is necessary to make informed economic decisions on treatment and alternative therapies. This study aimed to assess preference-based measures of HRQL in sickle cell patients.

Methods and findings

Data were collected from two SCD outpatient clinics in Ibadan, Nigeria. A standard algorithm was used to derive utility scores, and measure SF-6D from the SF-36. A multivariate regression model was used to assess predictors and their impact. A combination of socio-demographic, bio-physiological and psychosocial variables predicted utility score in people with SCD. Socio-demographic and bio-physiological factors explained 7.5% and 17.9% of the variance respectively, while psychosocial factors explained 4.9%. Women had lower utility scores with a small effect size (d = 0.17). Utility score increased with level of education but decreased with age, anxiety, frequency of pain episodes and number of co-morbidities.

Conclusions

Utility score in SCD was low indicating a substantial impact of the disease on HRQL of patients and the value they place on their health state due to the limitations they experienced. Interventions should include both clinical and psychosocial approach to help in improving their quality of life of the patients.

SUBMITTER: Ojelabi AO

PROVIDER: S-EPMC6860997 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:BACKGROUND:Health-related quality of life (HRQL) in interstitial lung disease (ILD) patients is impaired. We aimed to identify baseline predictors for HRQL decline within a 12-month observation period. METHODS:We analyzed 194 ILD patients from two German ILD-centers in the observational HILDA study. We employed the disease-specific King's Brief Interstitial Lung Disease questionnaire (K-BILD) with the subdomains 'psychological impact', 'chest symptoms' and 'breathlessness and activities', and the generic EQ-5D Visual Analog Scale (VAS). We evaluated how many patients experienced a clinically meaningful decline in HRQL. Subsequently, we investigated medical and sociodemographic factors as potential predictors of HRQL deterioration. RESULTS:Within the study population (34.0% male, Ø age 61.7) mean HRQL scores hardly changed between baseline and follow up (K-BILD: 52.8 vs. 52.5 | VAS: 60.0 vs. 57.3). On the intra-individual level, 30.4% (n?=?59) experienced a clinically relevant deterioration in K-BILD total score and 35.4% (n?=?68) in VAS. Lower baseline forced vital capacity (FVC) % predicted determined HRQL decline in K-BILD total score (ß-coefficient: - 0.02, p?=?0.007), VAS (ß-coefficient: - 0.03, p?<?0.0001), and in the subdomain 'psychological impact' (ß-coefficient: - 0.02, p?=?0.014). Lower baseline diffusing capacity of carbon monoxide (DLCO) % predicted determined deterioration in 'breathlessness and activities' (ß-coefficient: - 0.04, p?=?0.003) and 'chest symptoms' (ß-coefficient: - 0.04, p?=?0.002). Additionally, increasing age predicted decline in 'psychological impact' (ß-coefficient: 0.06, p?<?0.007). CONCLUSION:Around a third of ILD patients experienced a clinically relevant HRQL deterioration in a 12-month period, which was associated with baseline lung function values in all K-BILD domains. As lung function values are time-dependent variables with possible improvements, in contrast to age and ILD subtype, it, thus, seems important to improve lung function and prevent its decline in order to maintain HRQL on the possibly highest level.