MATERIALS AND METHODS: Systematic searches of PubMed, Scopus and Web of Science databases were conducted. Independent reviewers screened the title, abstract and full texts according to predetermined inclusion and exclusion criteria. Articles published in English from January 2012 to March 2022 reporting the QoL of non-syndromic young patients aged 7-18 years with CL/P were included. Review articles and articles reporting the psychological adjustment of parents or other family members with CL/P were excluded.
RESULTS: 975 publications were identified, of which 20 studies met our inclusion criteria. The majority of studies reported that the CL/P condition has a negative impact on the QoL. Psychological health, functional well-being, socialemotional well-being and school environment are domains that are affected. Compared with typically developing young patients, those with CL/P had lower QoL scores even though QoL was assessed using different instruments across studies. The impact of CL/P on overall QoL scores varied by age but not gender or cleft type.
CONCLUSION: Our reviews had shown the presence of CL/P negatively affects the QoL of young patients. Psychological health is the most affected QoL domain. Understanding the impacted domain will help in planning and delivering better health care for individuals with CL/P and reducing the stigma commonly associated with CL/P. Future studies should target intervention on psychological health and consider resilience factors towards positive adjustment.
STUDY DESIGN: 50 patients aged 2-18 years who perform CIC were included in this cohort study. Patient compliance with CIC was evaluated using the validated Intermittent Catheterization Adherence Scale (ICAS). CIC difficulties were assessed using the validated Intermittent Catheterization Difficulty Questionnaire (ICDQ). Data was obtained on patients' co-morbidity, caregiver factors, socio-economic factors, CIC technique, access to catheters and facilities, urinary tract infections, incontinence, urology tests and treatment. Statistical analysis was performed.
RESULTS: Mean age was 6.68 ± 4.34 years. 32 (64%) patients commenced CIC within the first month of life. Mean daily CIC frequency was 4.70 ± 1.33.30 (60%) participants showed strong adherence to CIC. 39 (78%) participants were able to catheterize with no or minor difficulties. Pain (6, 12%), transient blocking sensation (6.12%), and urinary incontinence (3, 6%) were the predominant difficulties encountered. CIC performed by caregiver was associated with improved adherence compared to patient self-catheterization (p = 0.039). The mean age of participants who self-catheterized was 10.7 ± 3.7 years. Strong adherence was also observed among patients who purchased their own CIC catheters (p = 0.007). Participants with lower ICDQ score were more likely to be compliant with CIC (p = 0.007). CIC adherence was not affected by patient's age, gender, co-morbidity, mobility, caregiver factors, socio-economic factors, and age at initiation of CIC. There was no significant association between CIC adherence and febrile urinary tract infections, upper tract deterioration, and bladder stones at 6 months follow-up.
DISCUSSION: There is lower CIC adherence when a child begins to self-catheterize and healthcare providers should be alert during this period of transition. Though most patients with spina bifida have decreased urethral sensation, some patients do experience significant pain during CIC which may impact their compliance. These patients would need a review of their catheterization techniques to improve adherence. The limitations of our study are its modest sample size from a single center and short study period. Our study provides insights into the feasibility of instituting CIC in developing countries.
CONCLUSION: Strong CIC adherence was observed among patients who were catheterized by their caregiver, purchased their own CIC catheters, and encountered minimal difficulties during catheterization. CIC adherence had no effect on short-term urological outcomes.