Saudi experience of adherence with quality indicators of health care for childhood systemic lupus erythematosus

Ghada AlSalmi; Kawthar AlHusieni; Sulaiman M Al-Mayouf

doi:10.4103/ara.ara_4_21

ORIGINAL ARTICLE

Year : 2021 | Volume : 1 | Issue : 1 | Page : 2-6

Saudi experience of adherence with quality indicators of health care for childhood systemic lupus erythematosus

Ghada AlSalmi, Kawthar AlHusieni, Sulaiman M Al-Mayouf
King Faisal Specialist Hospital and Research Center, Riyadh, Saudi Arabia

Date of Submission	30-Jul-2021
Date of Decision	29-Aug-2021
Date of Acceptance	02-Sep-2021
Date of Web Publication	13-Nov-2021

Correspondence Address:
Dr. Sulaiman M Al-Mayouf
Department of Pediatrics, Pediatric Rheumatology, King Faisal Specialist Hospital and Research Center, Alfaisal University, Po Box 3354, Riyadh 11211
Saudi Arabia

Source of Support: None, Conflict of Interest: None

DOI: 10.4103/ara.ara_4_21

Abstract

Objective: The objective of the study is to report the compliance with childhood-onset systemic lupus erythematosus-quality indicators (cSLE-QIs) in a Saudi Tertiary Childhood Lupus Clinic. Methods: In this cross-sectional, observational study, charts of patients with cSLE followed regularly between January 2010 and December 2019 at King Faisal Specialist Hospital and Research center, Riyadh, were reviewed. Data were collected at the last follow-up visit comprising the compliance with the quality of medical care of patient with cSLE using cSLE-QIs, which capturing diagnostic testing, lupus nephritis, medication, bone health, ophthalmological assessment, vaccination, and transition. Pregnancy domain and smoking cessation were not measured in this study. Results: A total of 66 (58 females) cSLE patients were assessed. The median age at disease onset was 10 (interquartile range [IQR]: 7.0–11.0) years, and the median disease duration was 4 (IQR: 3.0–6.0) years. Most of the patients had nephritis (69.7%), while cardiovascular and neuropsychiatric features were 37.7% and 18.8%, respectively. The adherence with cSLE-QIs differed markedly; performance of diagnostic testing, medication management including corticosteroid weaning, and bone health was high while the compliance with flu vaccine, eye screening, photoprotection, and education about cardiovascular risk was lower. There was a noticeable variability between the international childhood lupus clinics. Conclusion: Providing cSLE patients with a high quality of health care is challenging without the proper guidance. Hopefully, these findings will enhance the adherence to cSLE-QIs and increase the likelihood of the desired outcome.

Keywords: Outcome, quality indicators, Saudi Arabia, systemic lupus erythematosus

How to cite this article:
AlSalmi G, AlHusieni K, Al-Mayouf SM. Saudi experience of adherence with quality indicators of health care for childhood systemic lupus erythematosus. Ann Rheumatol Autoimmun 2021;1:2-6

How to cite this URL:
AlSalmi G, AlHusieni K, Al-Mayouf SM. Saudi experience of adherence with quality indicators of health care for childhood systemic lupus erythematosus. Ann Rheumatol Autoimmun [serial online] 2021 [cited 2023 May 28];1:2-6. Available from: https://www.arajournal.org//text.asp?2021/1/1/2/330432

Introduction

Systemic lupus erythematosus (SLE) is an autoimmune disease involving multisystems with heterogeneous presentations that can challenge to treat and monitor. Unfortunately, there is no available cure. However, there is a great development in the management of SLE leading to a significant improvement in the survival and quality of life of patients with SLE.^[1],[2] Childhood-onset SLE (cSLE) accounts for 20% of the whole lupus population. Despite great similarity with the adult counterpart, several studies showed that cSLE has more severe disease activity and more frequent organ involvement.^[3],[4],[5] Patients with SLE may experience periods of improvement and clinical remission because of the treatment adjustment, which must coincide with regular assessment of the disease activity using a standardized core set. Several recommendations have been established for monitoring SLE patients; these recommendations represent systematically developed statements to improve the clinical practice and should help the treating physicians in minimizing the variability in the assessment and treatment approach. In the real practice, there is a disparity and variability in medical care of cSLE.^[6] Quality indicators (QIs) have been established to ensure that the minimum of standards of medical care has been provided in a routine clinical practice.^{[7],[8],[9],[10]} Recently, cSLE-OIs have been developed and assessed in different international tertiary pediatric rheumatology centers.^[9],[11] To the best of our knowledge, cSLE-OIs have not been assessed in cSLE populations form Middle East. Our study aimed to assess the quality of the comprehensive medical care at our pediatric SLE clinic by rating the compliance with cSLE-OIs.

Methods

This work is a cross-sectional, observational study including patients with cSLE seen and followed between January 2010 and December 2019 at King Faisal Specialist Hospital and Research Center (KFSHRC), Riyadh, Saudi Arabia. All included patients fulfilled Systemic Lupus International Collaborating Clinics (SLICC) Classification Criteria, with minimal follow-up period of 1 year at KFSHRC.^[12] Patients with SLE but associated with underlying disease such immunodeficiency or overlap syndrome were excluded.

As part of our usual health-care and routine follow-up visits, patients are seen and assessed every 3 months. However, the frequency of visits varies depending on the patient's disease activity. An interval history including reviewing the medications and complete physical examination besides laboratory and imaging evaluation completed at each follow-up visit.

The data collection was for the period from January 2010 to December 2019. Medical records of all enrolled patients were reviewed for demographic characteristics, clinical and laboratory data. Data regarding QIs based on the published cSLE QIs were collected.^[9] Data have relevance to QIs comprising lupus nephritis, ophthalmological assessment, vaccination status, and medication including use of glucocorticoids, hydroxychloroquine and Vitamin D supplementation, and antihypertensive medications during the disease course were collected. A QI only considered being met if there was written documentation that certain education (i.e. proper information has been explained and offered to the patient/parents) or test had been performed. It is worth mentioning that KFSHRC policy determined the cut-off age of transferring pediatric patients to adult care services is 14 years. Considering this point, we believe that certain OIs addressing “pregnancy and reproductive health” and life-style modification OI focusing on “smoking cessation” are irrelevant to our patients. Accordingly, pregnancy domain and smoking cessation were not measured in this study.

Disease outcome was measured using SLICC American College of Rheumatology Damage Index (pSDI), which comprises 12 different domains: ocular, neuropsychiatric, renal, pulmonary, cardiovascular, peripheral vascular, gastrointestinal, musculoskeletal, skin, premature gonadal failure, diabetes, and malignancy.^[6] Data regarding pSDI were collected at the last available follow-up visit.

Statistical analysis

All statistical analyses of data were done using the SAS software package, version 9.4 (Statistical Analysis System, SAS Institute Inc., Cary, NC, USA). The results were expressed as mean ± standard deviation and medians for continuous variables and percentages for categorical variables. The median and interquartile range (IQR) were used when deemed necessary.

Ethical considerations

This study was conducted under the Declaration of Helsinki and the guidelines of the Research Advisory Council (RAC) of the KFSHRC and the laws of Saudi Arabia. The study protocol was approved under RAC# 2191122. All the collected data result from routine medical procedure and extracted from the patient's file. All data were collected anonymously, and the confidentiality of the patients was protected. Personal identifying data was not collected for this research project.

Results

Demographic and clinical features

A total of 66 (58 females) cSLE were enrolled. All included patients were 14 years or younger and had treatment and regular follow-up in our pediatric lupus clinic at KFSHRC-Riyadh, which is the main tertiary hospital in Saudi Arabia with a busy pediatric rheumatology service. The median age at disease onset was 10 (IQR 7.0–11.0) years and a median disease duration of four (IQR: 3.0–6.0) years. Most of the patients had major systems involvement. Forty-nine (74.2%) patients had nephritis proved by renal biopsy. Of those patients, 33 (67.3%) had proliferative disease, six (12.2%) had membranous, four (8.2%) had mesangial, and six (12.2%) had proliferative/membranous glomerulonephritis. Cardiovascular and neuropsychiatric features were seen in 24 (37.8%) and 12 (18.2%) patients, respectively. [Table 1] shows the frequency and distribution of the system involvement. All patients received induction treatment in the form of corticosteroid and hydroxychloroquine. According to the clinical indications, patients received various conventional synthetic and biologic disease-modifying antirheumatic drugs. Mycophenolate mofetil was the most common conventional synthetic drugs while rituximab was the most frequent biologic drug. At the last follow-up visit, the mean disease damage (pSDI) was 2.3 ± 1.6.

Table 1: The frequency and distribution of systems involvement

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Adherence with childhood-onset systemic lupus erythematosus quality indicators

The adherence with cSLE-QIs differed markedly. The percentage of compliance with QIs is listed in [Table 2]. The performance of diagnostic testing was high; all newly diagnosed patients with cSLE had the standard laboratory evaluation. In contrast, the adherence to general prevention measures was observed in less than half of our patients. Influenza vaccine and photoprotection were documented in only 41% and 45.5%, respectively, of the included patients.

Table 2: The percentage of compliance with modified quality indicators in 66 patients with childhood systemic lupus erythematosus

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With documented attempts, transferring patients who have reached the age of 14 years to the adult rheumatology service were arranged in 83.3% of our patients. All patients had the standard laboratory evaluation at diagnosis. Those who met the findings suggested lupus nephritis underwent renal biopsy. However, there was a considerable variability in performance of laboratory surveillance during follow-up visits. All patients received corticosteroids at diagnosis, with documented attempts at tapering corticosteroids. All patients received hydroxychloroquine, but one male did not take it because of glucose-6-phosphate dehydrogenase deficiency. The majority (91%) of our patients received corticosteroid sparing agents, as indicated. Laboratory tests for monitoring the disease activity and side effects of used medications were regularly performed. However, the education about the risks and benefits of immunosuppressive drugs was not well documented. Treatment of hypertension was documented for almost half of our patients. Bone mineral density measurement was performed in 42 patients and remeasured in almost half of them (46.2%). Calcium and Vitamin D supplementation were offered to all patients with long-term use of corticosteroid. Eye exams were documented in only 34.8% of our patients and of those patients, 46.9% had regular eye exams. Education on cardiovascular risk factors never been documented.

Discussion

Certainly, the new recommendations improved the clinical practice and care of SLE patients.^[6],[8] Occasionally, there is a gap between the recommendations and real routine practice because of the variability in experience of the treating team and resources availability. Therefore, quality care of SLE patients required a comprehensive medical care and regular monitoring and assessment. Researches on quality of medical care including health-related quality of life (HRQOL) among patients with chronic diseases including SLE have been undertaken for many years and become increasingly important. Several studies showed a relationship between a comprehensive medical care and a good HRQOL.^[13],[14] Unfortunately, there is no gold standard for HRQOL. Furthermore, the assessment of HRQOL based only on patient reported assessments which might be affected by various biases. To enhance the comprehensive medical care, QIs set for SLE have been established to evaluate the monitoring of SLE patients in the routine clinical practice.^{[10],[11],[15]} These indicators are a translation of the previous guidelines and recommendations and represent the minimum standard of care as a practical guide that should be provided to improve a high quality of medical care for patients with SLE. Hollander et al. identified 26 QIs specific to cSLE. These 26 QIs fall under several domains: laboratory testing around time of diagnosis, general prevention, lupus nephritis and hypertension management, medication management, bone health, ophthalmologic surveillance, education on cardiovascular risk factors, pregnancy, and neuropsychiatric manifestations.^[9] A recent cross-sectional study assessed quality of medical care measured by observance QIs at different tertiary pediatric rheumatology clinics in the United States, Brazil, and India; authors noticed that the cSLE-OIs were not consistently met with significant differences in the observance of the QIs.^[16] To the best of our knowledge, the adherence to the QIs among cSLE populations has never been investigated in the Middle East. In the present study, we reported the compliance with cSLE-QIs at a Saudi tertiary pediatric lupus clinic. Our results are consistent with the observation from previously published reports; it showed marked variability in the adherence with cSLE-QIs.^[11],[17] The QIs required to diagnose SLE were largely met, while the QIs required to be achieved during the follow-up period were the least implemented. The performance of diagnostic testing, medication management including corticosteroid weaning, and bone health was high while the compliance with flu vaccine, eye screening, photoprotection was lower. It was difficult to decide about the education about cardiovascular risk as this domain never been documented.

Of note, the adherence to cSLE-QIs depends on several factors including factors relating patients and their families and the health-care system. The treating physician has a crucial role in maintaining the standard of medical care and providing the appropriate patient and family education.

Recent study highlighted the importance of adherence to QIs in a cSLE population and the potential impact in optimizing care delivery to reduce disease damage.^[17],[18] Our patients had high average pSDI score. However, we did not correlate the pSDI score with the adherence to cSLE-Qis for the following reasons: it is worth mentioning that QIs are used to assess medical care retrospectively; we believe that inconsistent documentation of certain indicators such as education about photoprotection and cardiovascular risk is negatively affecting the accuracy of QIs performance; and finally, it is essential remember that important aspects of medical care are not covered by the QIs set, such as the management of specific disease manifestations.^{[15],[17],[19]} Thus, impact and relative contribution of implementation of cSLE-QIs on disease activity and damage remain unclear and need further evidence before advocating the use of these QIs in routine clinical practice.

Our study has its limitations, and results should be interpreted carefully. Data were collected retrospectively for patients diagnosed over a long period with variations in management and also inconsistent documentation which might be related to the recent transferring the patient's file system from paper-based to electronic medical files.

Conclusion

Although cSLE-QIs represent a minimal acceptable standard of care, these indicators are not meant to represent the best practice or to serve as guideline for patient management. Obviously, cSLE-QIs provide an initial tool for assessing health-care quality and hopefully to minimize the inconsistencies among pediatric rheumatologists. To our knowledge, this is the first attempt to assess the quality of medical care of cSLE in the Middle East. We hope that it will encourage pediatric rheumatologists in Arab countries to integrate these QIs in their systematic medical care of patients with cSLE.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.

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