Health‐related quality of life and developmental outcome of children on home mechanical ventilation in a developing country: A cross‐sectional study

Abstract

Background Provision of home mechanical ventilation (HMV) to children with chronic respiratory insufficiency enhances growth and quality of life. The hypothesis was that health‐related quality of life (HRQoL) and the development of these children were poorer than in healthy children. Objectives To determine the HRQoL and developmental outcome of children on HMV. Methods This cross‐sectional study used the TNO‐AZL Preschool children's Quality Of Life (TAPQOL; <5 years old) and Health Utilities Index (HUI) 2/3 (≥5 years old) to assess the quality of life and the Schedule of Growing Skills‐II to assess development. Instruments were used on children currently or previously on HMV (≥3 months) and compared with age and sex‐matched controls. Results Sixty‐five patients and 130 controls were recruited. Patients' median (interquartile range) age was 3.12 (1.65, 5.81) years. Patients had significantly lower TAPQOL scores in the domains of lung, liveliness, positive mood, social functioning, motor functioning, and communication, and lower HUI 2/3 scores in hearing, sensation, pain, speech, mobility, ambulatory, dexterity, and self‐care domains. The developmental outcome of patients was poorer in all domains. However, patients had fewer behavioral problems. Those with respiratory tract disease and without comorbidities had better HRQoL and developmental scores. Having a parent as the primary caregiver was associated with better speech and language skills. Conclusions HRQoL and the developmental outcome are lower in children on HMV compared to controls. Children with respiratory tract disease and without comorbidities have a better outcome. Parents play a crucial role in the acquisition of speech.

Disease burden in patients with severe hand, foot, and mouth disease in Jiangsu Province: a cross-sectional study

“…Fifthly, the “motor functioning,” “social functioning,” and “communication” dimensions of the TAPQOL scale were only appropriate for children aged 18 months and older, while the rest of the nine scales were still applicable to children younger than 18 months. 38 Therefore, the assessment of HRQOL for patients younger than 18 months of age may be biased. Sixthly, the TAPQOL scale was completed by the parents of children infected with severe HFMD rather than the children themselves.…”

Quality of life in children with diseases causing central airway obstruction: Reliability and validity of the TAPQOL questionnaire

“…12,17 and has been used to measure HRQoL in different pathologies, on occasions not specifying the psychometric properties of those populations. 10,13,[21][22][23][24][25][26][27] Given that the reliability and validity are not intrinsic properties of questionnaires, but depend on the target population of the measure, the purpose of this study was the psychometric assessment of the TAPQOL questionnaire in patients with CAO that guarantees the results when applied to this population. The statistics used, Cronbach's α for the reliability analysis, and principal component analysis for the validity are endorsed by the bibliography.…”

“…The TAPQOL questionnaire has been widely used in the paediatric population in different pathologies and in different countries 7–13 …”

Building a home ventilation programme: population, equipment, delivery and cost

“…Brazil, 32 Iran, 33 South Africa, 34 Tunisia, 35 Malaysia, 36 Turkey, 37 Argentina, 38 Serbia, 39 India 40 and Pakistan. 41 Evolution of the prevalence of HMV Figure 4 illustrates the evolution over time of HMV in 15 areas, where estimates of prevalence of HMV were available at different periods.…”

“…These countries were, therefore, not included in figures 2 and 3 . By decreasing order of GDP per capita, middle and low-income countries developing HMV include Thailand, 30 China, 31 Brazil, 32 Iran, 33 South Africa, 34 Tunisia, 35 Malaysia, 36 Turkey, 37 Argentina, 38 Serbia, 39 India 40 and Pakistan. 41 …”