Tamene Fetene Terefe, Haimanot Abebe Geletie, Fisha Alebel GebreEyesus, Tadesse Tsehay Tarekegn, Baye Tsegaye Amlak, Kassa Kindie, Omega Tolessa Geleta, Agerie Aynalem Mewahegn, Bogale Chekole Temere, Shegaw Tesfa Mengist, Masino Tessu Beshir, Alemayehu Wondie, Belayneh Mengist
Clinical competency and associated factors among undergraduate nursing students studying in universities of Southern regional state of Ethiopia, 2021
Heliyon
activated phosphoinositide 3kinase delta syndrome apds ultrarare primary immunodeficiency 256 cases reported globally study aimed explore disease burden apds perspective individuals apds caregivers qualitative interviews conducted healthcare providers hcps individuals apds caregivers explore symptoms healthrelated quality life hrqol impact apds individuals caregivers also completed narrative account exercise interviews audio recorded transcribed data analysed using thematic analysis saturation recorded semistructured qualitative interviews conducted healthcare providers hcps individuals apds caregivers individuals caregivers option completing narrative account exercise six hcps participated interview seven participants completed narrative account exercise n 5 caregivers n 2 individuals apds 12 took part interview n 4 caregivers n 8 individuals apds themes identified hcps interviews included symptoms clinical manifestations hrqol impacts treatmentsmanagement apds narrative account exercise identified similar themes addition journey diagnosis themes explored individualcaregiver interviews reported clinical manifestations symptoms apds included susceptibility infections lymphoproliferation gastrointestinal gi disorders fatigue bodily pain breathing difficulties hrqol impacts living apds included negative impacts daily activities including work education social leisure activities physical functioning well emotional wellbeing concern future interpersonal relationships impacts caregiver hrqol included negative impacts physical health work emotional wellbeing interpersonal relationships family life holidays management apds included use healthcare services medications including immunoglobulin replacement therapy irt rapamycin prophylactic antibiotics leniolisib well medical procedures due complications apds high disease burden unmet need licensed targeted treatments modify disease progression study first describe daytoday experience hrqol impact apds perspective individuals living condition caregivers treating physicians