Health-Related Quality of Life of Patients and Families with Primary Immunodeficiency in Malaysia: a Cross-Sectional Study

Meelad, Ruwaydah Ahmed; Hamid, Intan Juliana Abd; Zainudeen, Zarina Thasneem; Hashim, Ilie Fadzilah; Azizuddin, Muhd Nur Akmal; Mangantig, Ernest; Taib, Fahisham; Mohamad, Norsarwany; Ismail, Intan Hakimah; Latiff, Amir Hamzah Abdul; Noh, Lokman Mohd

doi:10.1007/s10875-023-01463-1

Cited by 2 publications

(10 citation statements)

References 23 publications

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“…19,28 Contrary to some studies on specific PID types, our research included various PID types and revealed no differences in anxiety, depression, and HRQOL scores based on the IUIS classification, aligning with previous research in diverse patient groups. 2,14,20 In our study investigating the subdomains of HRQOL, we observed some remarkable relationships. Trait anxiety has negative effects on all of the subdimensions of HRQOL except physical functioning and role limitations due to emotional problems.…”

Section: Ta B L Ementioning

confidence: 67%

“…[3][4][5]12,13 There are numerous studies assessing the child's psychology from the parent's perspective. 9,14,15 It is demonstrated that children with PID had anxiety and depressive symptoms and notably reduced pediatric HRQOL both from the perspectives of the child and the parent. 4,8,14 Meelad et al reported that children often rated themselves as physically and socially active, while their parents had concerns in these areas.…”

Section: Discussionmentioning

confidence: 99%

“…9,14,15 It is demonstrated that children with PID had anxiety and depressive symptoms and notably reduced pediatric HRQOL both from the perspectives of the child and the parent. 4,8,14 Meelad et al reported that children often rated themselves as physically and socially active, while their parents had concerns in these areas. 14 Kuburovic found that children with PID reported similar school functioning to controls, as their self-reports.…”

Section: Discussionmentioning

confidence: 99%

“…4,8,14 Meelad et al reported that children often rated themselves as physically and socially active, while their parents had concerns in these areas. 14 Kuburovic found that children with PID reported similar school functioning to controls, as their self-reports.…”

Section: Discussionmentioning

confidence: 99%

“…4,9 Piazza-Waggoner found that children with mild illnesses exhibited less adaptive coping, and their caregivers demonstrated more maladaptive coping compared to other groups. 4,14 Children often selfassessed more positively than their parents with the same medical condition, implying better self-evaluation skills 4,10,11 or distressed caregivers may view their child's behavioral functioning more negatively. 11 However, this difference could also imply that children consistently underestimate the severity of their illness.…”

Section: Discussionmentioning

confidence: 99%

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Life quality, depression, and anxiety levels in parents of children with primary immunodeficiency

Kaplan Sarıkavak,

Sarıkavak,

Türkyılmaz Uçar

et al. 2024

Pediatric Allergy Immunology

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BackgroundPrimary immune deficiencies (PID) encompasses genetic disorders that result in recurrent infections and immune dysregulation, often increasing the risk of malignancies. The aim of this study is to determine the quality of life, depression, and anxiety in parents of children with PID.MethodsVarious validated assessment tools, including the Beck Depression Inventory (BDI), State and Trait Anxiety Inventory (STAI), the 36‐item Short Form Survey (SF‐36), and a demographic form, were employed to gather data from 85 parents of 64 PID patients and 85 parents of 75 healthy children.ResultsThe findings reveal that parents of PID patients exhibited higher BDI, STAI‐S, STAI‐T, and fatigue subdomain of SF‐36 (p = .013, p = .013, p = .027, p = .000). Both parents had lower energy levels than the normal population, but mothers experienced higher levels of anxiety and depression. PID mothers' had higher scores than fathers of PID patients with healthy children in BDI, STAI‐S, and STAI‐T (p = .002, p = .010, p = .001). Mothers of PID patients reported lower scores in RLEP, E/F, EWB, P, and GH compared to fathers (p = .009, p = .005, p = .034, p = .001, p = .003). Additionally, the study found that STAI‐T influenced all subdimensions of HRQOL. These results highlight the substantial emotional and psychological burden placed on parents caring for children with PID.ConclusionThe study underscores the importance of supporting caregivers to enhance the overall well‐being of both parents and children with PID. Such support can potentially alleviate depression and anxiety levels among parents, ultimately improving their quality of life and aiding in the management of children with PID.

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