As with many other chronic diseases, systemic lupus erythematosus (SLE) and lupus nephritis (LN) have significant impacts on the health-related quality of life (HRQoL). Medication non-adherence is a significant challenge in the management of SLE, with consistently up to 75% of patients being non-adherent with their SLE medications. There is a need to assess the patient’s perspective using patient-reported outcomes (PROs) to better understand the current impact of LN on HRQoL and treatment adherence in our region. The aim of this study was to explore the relationship between HRQoL and treatment adherence in patients with LN from the Colombian Caribbean.
Methods
A cross-sectional study was conducted from June to December 2022, including patients with biopsy-proven LN. HRQoL and treatment adherence were assessed using the Lupus Quality of Life (LupusQoL) and the Compliance Questionnaire in Rheumatology 19 (CQR19) instruments, respectively. Patients were categorized as adherent or non-adherent based on medication intake (defined as >80% correct dosage). Principal component analysis (PCA) was employed to identify principal components between adherent and non-adherent patients.
Results
A total of 42 patients with LN were included. Of these, 38 (90%) were female, and the mean age was 31 ± 10 years. Proliferative class IV was the predominant histopathological profile (90%). Twenty-five (60%) patients were categorized as non-adherent. Across all LupusQoL domains, a comprehensive range of responses was observed. Pain, planning, and intimate relationships domains remained unaffected, while burden to others domain had the lowest score. Poorer planning score correlated with older age (r = −0.72; p < .05) and longer disease duration (r = −0.74; p < .05). SLEDAI-2 K correlated with the pain domain (r = −0.78; p < .05). Non-adherent patients exhibited significantly worse pain domain scores compared to adherent counterparts (p < .05). PCA showed strong interactions between planning and pain, as well as between physical health and body image domains.
Conclusions
LupusQoL pain domain scores were significantly worse in non-adherent patients compared to adherent patients. Effective pain management could be a determinant in HRQoL and treatment adherence rates in our population.
CarterEEBarrSGClarkeAE. The global burden of SLE: prevalence, health disparities and socioeconomic impact. Nat Rev Rheumatol2016; 12(10): 605–620. DOI: 10.1038/nrrheum.2016.137.
2.
DavidsonA. What is damaging the kidney in lupus nephritis?Nat Rev Rheumatol2016; 12(3): 143–153. DOI: 10.1038/nrrheum.2015.159.
3.
McElhoneKCastelinoMAbbottJ, et al.The LupusQoL and associations with demographics and clinical measurements in patients with systemic lupus erythematosus. J Rheumatol2010; 37(11): 2273–2279. DOI: 10.3899/jrheum.091277.
4.
McElhoneKAbbottJShelmerdineJ, et al.Development and validation of a disease-specific health-related quality of life measure, the LupusQol, for adults with systemic lupus erythematosus. Arthritis Rheum2007; 57(6): 972–979. DOI: 10.1002/art.22881.
5.
Jinoos YazdanyMDM. Health-related quality of life measurement in systemic lupus erythematosus: the LupusQoL, SLEQoL, and L-QoL. Health-related2011; 141(4): 520–529. DOI: 10.1002/acr.20636.
6.
RadinMEl HasbaniGBarinottiA, et al.Quality of life measures in Systemic Lupus Erythematosus: a systematic review. Reumatismo2022; 73(4): 1447. DOI: 10.4081/reumatismo.2021.1447.
7.
Williams-HallRBerryPWilliamsonN, et al.Generation of evidence supporting the content validity of SF-36, FACIT-F, and LupusQoL, and novel patient-reported symptom items for use in patients with systemic lupus erythematosus (SLE) and SLE with lupus nephritis (LN). Lupus Sci Med2022; 9(1): e000712. DOI: 10.1136/lupus-2022-000712.
8.
RinaldiSDoriaASalaffiF, et al.Health-related quality of life in Italian patients with systemic lupus erythematosus. I. Relationship between physical and mental dimension and impact of age. Rheumatology2004; 43(12): 1574–1579. DOI: 10.1093/rheumatology/keh397.
9.
MehatPAtiquzzamanMEsdaileJM, et al.Medication nonadherence in systemic lupus erythematosus: a systematic review. Arthritis Care Res2017; 69(11): 1706–1713. DOI: 10.1002/acr.23191.
10.
LiuLHFevrierHBGoldfienR, et al.Understanding nonadherence with hydroxychloroquine therapy in systemic lupus erythematosus. J Rheumatol2019; 46(10): 1309–1315. DOI: 10.3899/jrheum.180946.
11.
ChehabGSauerGMRichterJG, et al.Medical adherence in patients with systemic lupus erythematosus in Germany: predictors and reasons for non-adherence – a cross-sectional analysis of the LuLa-cohort. Lupus2018; 27(10): 1652–1660. DOI: 10.1177/0961203318785245.
12.
FeldmanCHYazdanyJGuanH, et al.Medication nonadherence is associated with increased subsequent acute care utilization among medicaid beneficiaries with systemic lupus erythematosus. Arthritis Care Res2015; 67(12): 1712–1721. DOI: 10.1002/acr.22636.
13.
de KlerkEvan der HeijdeDvan der TempelH, et al.Development of a questionnaire to investigate patient compliance with antirheumatic drug therapy. J Rheumatol1999; 26(12): 2635–2641. https://www.ncbi.nlm.nih.gov/pubmed/10606375
14.
De KlerkEVan Der HeijdeDLandewéR, et al.The compliance-questionnaire-rheumatology compared with electronic medication event monitoring: a validation study. J Rheumatol2003; 30(11): 2469–2475.
15.
HughesLDDoneJYoungA. A 5 item version of the Compliance Questionnaire for Rheumatology (CQR5) successfully identifies low adherence to DMARDs. BMC Musculoskelet Disord2013; 14: 286. DOI: 10.1186/1471-2474-14-286.
16.
Quintana LópezGMuñetón LópezGCoral-AlvaradoP, et al.Design and validation of LupusCol, an instrument for the evaluation of health-related quality of life in Colombian adult patients with systemic lupus erythematosus. Rheumatology2015; 54(1): 104–112. DOI: 10.1093/rheumatology/keu277.
17.
MedinaJEMoraCJaimesDA, et al.Valoración de la actividad, del daño crónico y alteración de la calidad de vida en una cohorte de pacientes colombianos con lupus eritematoso sistémico por medio de SELENA-SLEDAI, BILAG 2004, SLICC/ACR y SF-36. Rev Colomb Reumatol2013; 20(4): 211–217. DOI: 10.1016/S0121-8123(13)70135-X.
18.
Machado-AlbaJEMachado-DuqueMEGaviria-MendozaA, et al.Clinical characterization of a cohort of patients treated for systemic lupus erythematosus in Colombia: a retrospective study. PLoS One2023; 18(5): e0285889. DOI: 10.1371/journal.pone.0285889.
19.
AringerMJohnsonSR. Systemic lupus erythematosus classification and diagnosis. Rheum Dis Clin North Am2021; 47(3): 501–511. DOI: 10.1016/j.rdc.2021.04.011.
SavitzSTStearnsSCZhouL, et al.A comparison of self-reported medication adherence to concordance between Part D claims and medication possession. Med Care2017; 55(5): 500–505. DOI: 10.1097/MLR.0000000000000701.
22.
Fernández-AvilaDGAcciniMTobónM, et al.Validation and calibration to Spanish of the Compliance Questionnaire on Rheumatology in a group of Colombian patients on treatment for rheumatoid arthritis. Rev Colomb Reumatol2019; 26(2): 105–110. DOI: 10.1016/j.rcreu.2019.03.001.
23.
BarbichTCerdaOLSchneebergerEE, et al.Adherence to treatment with tofacitinib in patients with rheumatoid arthritis in daily clinical practice. Reumatol Clin2022; 18(3): 164–168. DOI: 10.1016/j.reumae.2020.11.003.
24.
Carrión-NessiFSMarcano-RojasMVFreitas-DeNobregaDC, et al.Validation of the LupusQoL in Venezuela: a specific measurement of quality of life in patients with systemic lupus erythematosus. Reumatol Clin2022; 18(6): 355–360. DOI: 10.1016/j.reuma.2021.02.007.
25.
R Core Team. R: a language and environment for statistical computing. Vienna, Austria: R Foundation for Statistical Computing, 2020. URL: https://www.R-project.org/
26.
Elera-FitzcarraldCAlvaMGamboa-CardenasR, et al.Factors associated with health-related quality of life in Peruvian patients with systemic lupus erythematosus. Lupus2018; 27(6): 913–919. DOI: 10.1177/0961203317751062.
27.
Carrión-NessiFSMarcano-RojasMVRomero ArochaSR, et al.Impact of demographic, clinical, and treatment compliance characteristics on quality of life of Venezuelan patients with systemic lupus erythematosus. BMC Rheumatol2022; 6(1): 2–10. DOI: 10.1186/s41927-021-00232-0.
28.
Etchegaray-MoralesIMéndez-MartínezSJiménez-HernándezC, et al.Factors associated with health-related quality of life in Mexican lupus patients using the LupusQoL. PLoS One2017; 12(1): e0170209. DOI: 10.1371/journal.pone.0170209.
29.
Garcia-GonzalezARichardsonMGarcia Popa-LisseanuM, et al.Treatment adherence in patients with rheumatoid arthritis and systemic lupus erythematosus. Clin Rheumatol2008; 27(7): 883–889. DOI: 10.1007/s10067-007-0816-6.
30.
HardyCGladmanDDSuJ, et al.Barriers to medication adherence and degree of nonadherence in a systemic lupus erythematosus (SLE) outpatient population. Rheumatol Int2021; 41(8): 1457–1464. DOI: 10.1007/s00296-021-04898-0.
31.
Mosley-WilliamsALumleyMAGillisM, et al.Barriers to treatment adherence among African American and white women with systemic lupus erythematosus. Arthritis Rheum2002; 47(6): 630–638. DOI: 10.1002/art.10790.
32.
JulianLJYelinEYazdanyJ, et al.Depression, medication adherence, and service utilization in systemic lupus erythematosus. Arthritis Rheum2009; 61(2): 240–246. DOI: 10.1002/art.24236.
33.
PetriMPerez-GutthannSLongeneckerJC, et al.Morbidity of systemic lupus erythematosus: role of race and socioeconomic status. Am J Med1991; 91(4): 345–353. DOI: 10.1016/0002-9343(91)90151-m.
34.
KoneruSKocharlaLHigginsGC, et al.Adherence to medications in systemic lupus erythematosus. J Clin Rheumatol2008; 14(4): 195–201. DOI: 10.1097/RHU.0b013e31817a242a.
35.
MarengoMFWaimannCAde AchavalS, et al.Measuring therapeutic adherence in systemic lupus erythematosus with electronic monitoring. Lupus2012; 21(11): 1158–1165. DOI: 10.1177/0961203312447868.
36.
Prados-MorenoSSabioJMPérez-MármolJM, et al.Adherence to treatment in patients with systemic lupus erythematosus. Med Clin2018; 150(1): 8–15. DOI: 10.1016/j.medcli.2017.05.035.
37.
Costedoat-ChalumeauNPouchotJGuettrot-ImbertG, et al.Adherence to treatment in systemic lupus erythematosus patients. Best Pract Res Clin Rheumatol2013; 27(3): 329–340. DOI: 10.1016/j.berh.2013.07.001.
38.
ShenavandehSManiAEazadnegahdarM, et al.Medication adherence of patients with systemic lupus erythematosus and rheumatoid arthritis considering the psychosocial factors, health literacy and current life concerns of patients. Curr Rheumatol Rev2021; 17(4): 412–420. DOI: 10.2174/1573397117666210301144651.
39.
XieXYangHNieA, et al.Predictors of medication nonadherence in patients with systemic lupus erythematosus in Sichuan: a cross-sectional study. Patient Prefer Adherence2018; 12: 1505–1511. DOI: 10.2147/PPA.S169776.
40.
SaillerLPuissantBMélianiP, et al.Blood concentrations of hydroxychloroquine and its desethyl derivative correlate negatively with the percentage of CD45RO+ cells among CD4+ lymphocytes in hydroxychloroquine-treated lupus patients. Ann N Y Acad Sci2007; 1108: 41–50. DOI: 10.1196/annals.1422.005.
KhanFGranvilleNMalkaniR, et al.Health-related quality of life improvements in systemic lupus erythematosus derived from a digital therapeutic plus tele-health coaching intervention: randomized controlled pilot trial. J Med Internet Res2020; 22(10): e23868. DOI: 10.2196/23868.
44.
ChambersSAAllenERahmanA, et al.Damage and mortality in a group of British patients with systemic lupus erythematosus followed up for over 10 years. Rheumatology2009; 48(6): 673–675. DOI: 10.1093/rheumatology/kep062.
45.
Elera-FitzcarraldCFuentesAGonzálezLA, et al.Factors affecting quality of life in patients with systemic lupus erythematosus: important considerations and potential interventions. Expert Rev Clin Immunol2018; 14(11): 915–931. DOI: 10.1080/1744666X.2018.1529566.
46.
WaldheimEAjeganovaSBergmanS, et al.Variation in pain related to systemic lupus erythematosus (SLE): a 7-year follow-up study. Clin Rheumatol2018; 37(7): 1825–1834. DOI: 10.1007/s10067-018-4079-1.
47.
PascoeKLoboscoSBellD, et al.Patient- and physician-reported satisfaction with systemic lupus erythematosus treatment in US clinical practice. Clin Ther2017; 39(9): 1811–1826. DOI: 10.1016/j.clinthera.2017.07.039.
48.
MozaffarianNLoboscoSLuP, et al.Satisfaction with control of systemic lupus erythematosus and lupus nephritis: physician and patient perspectives. Patient Prefer Adherence2016; 10: 2051–2061. DOI: 10.2147/PPA.S111725.
49.
BirtJAHadiMASargaloN, et al.Patient experiences, satisfaction, and expectations with current systemic lupus erythematosus treatment: results of the SLE-UPDATE Survey. Rheumatol Ther2021; 8(3): 1189–1205. DOI: 10.1007/s40744-021-00328-6.
50.
EmamikiaSGentlineCEnmanY, et al.How can we enhance adherence to medications in patients with systemic lupus erythematosus? Results from a qualitative study. J Clin Med2022; 11(7): 1857. DOI: 10.3390/jcm11071857.
