Quality of life and challenges experienced by the surviving adults with transfusion dependent thalassaemia in Malaysia: a cross sectional study

Abstract

Background Improvement in medical management has enabled transfusion dependent thalassaemia (TDT) patients to survive beyond childhood, building families, and contributing to the labour force and society. Knowledge about their adult life would provide guidance on how to support their needs. This study aims to explore the general well-being of adults with TDT, their employment status and challenges. Methods This study recruited 450 people with TDT, aged 18 and above, of both genders through all regional Thalassaemia societies in Malaysia and from the two participating hospitals, over five months in year 2016. A self-administered questionnaire including ‘Healthy Days Core Module’, WHOQOL-BREF and employment measurements was used. Multiple linear regression models were fitted with associations adjusted for several potential confounders. Results A total of 196 adults with TDT responded to the survey (43.6% response rate). Almost half (45%) had comorbidities and 9% suffered multiple complications: bone-related (13%), hormonal (12%), cardiac (3%) and infections (2%), resulting in 23% seeking treatment more than twice monthly. Within a month, they suffered from at least three days with poor physical and or mental health and their normal daily activities were disrupted up to three days. 36% were jobless and 38% of those with a job were receiving salaries below RM1000. The mean WHOQOL-BREF score (mean (SD)) was: physical health 62.6 (15.5), psychological health 64.7 (15.7), social relationship 64 (15.9), environmental health 60.8 (16.7). Having days with mental issues, financial status, education level, ethnic and marital status were main factors affecting QOL scores. Open questions showed dissatisfaction with health service provision, conflicting judgement in prioritising between health and job, and poor public empathy. Conclusion The adults with TDT perceived their health as good and had less unhealthy days when compared with people with other chronic diseases. However, some perceived themselves to be facing more life disruption in a rather non-supportive community and that health services do not meet their needs. Future qualitative studies are needed to focus on their perceived needs and to look for more tailored supportive approaches.

Health‐related quality of life with standard and curative therapies in thalassemia: A narrative literature review

“…Splenectomy was not seen to impact HRQOL in the physical and mental health domains, 26 but did lower vitality scores 19 . Factors affecting HRQOL on the WHOQOL‐BREF form included having days with mental issues, financial status, education level, ethnic status, and marital status 30 . TranQOL HRQOL scores were impacted by age, 29,35 gender, 29 receiving social support, 29,35 hemoglobin levels, 29 and comorbidities 29 .…”

“…Of these, 250 met the timeline of publication in the last 5 years. These articles were abstract and full‐text screened, ultimately yielding 31 included studies 18–48 . The results of this literature review are provided in the PRISMA flowchart in Figure 1.…”

“…19 Factors affecting HRQOL on the WHOQOL-BREF form included having days with mental issues, financial status, education level, ethnic status, and marital status. 30 TranQOL HRQOL scores were impacted by age, 29,35 gender, 29 receiving social support, 29,35 hemoglobin levels, 29 and comorbidities. 29 In pediatric patients, quality of life was found to be correlated with caregiver quality of life, 23 parent education level, 23,45 child education, 45 parent working status, 23 family income, 45 place of residence, 23 family history of disease, 23 blood transfusion frequency, 23,25 pretransfusion hemoglobin levels, 23 nutrition, 23 comorbidities, 23 and age.…”

Life satisfaction and difficulties experienced by the family members of individuals with thalassemia

“…Spirituality eases acceptance of the disease and allows people to become accustomed to it over time. Furthermore, patients' quality of life is affected by socio‐demographic variables (Adam, 2019 ; Foong et al, 2022 ). Patients' reactions differed according to their personality traits, the effects of the disease, and socio‐demographic variables.…”

Percepciones de la asociación de la actividad física y la calidad de vida en el rendimiento académico en universidades colombianas (Perceptions of the association of physical activity and quality of life in academic performance in Colombian universities)

“…Posibles influencias en la optimización de la salud (Glorieux, et al, 2022), parten de modelos de mediación moderada (Zhang, et al, 2022). Por ende, la calidad de vida y desafíos experimentados (Foong, et al, 2022), potencian cambios en la búsqueda del estilo de vida adecuado (Brandl, et al, 2022).…”