The Relation between Different Aspects of Quality of Life with Coping Style in Adolescents with Thalassemia in Comparison to a Healthy Group

Abbasi, Samira; Shahriari, Mohsen; Ghanavat, Majid; Talakoub, Sedigheh; Asl, Fatemeh Sadat Mosavi; Hemati, Zeinab

doi:10.18502/ijhoscr.v14i1.2357

Cited by 8 publications

(8 citation statements)

References 15 publications

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“…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.…”

Section: Resultsmentioning

confidence: 99%

“…12 However, children with thalassemia and adults with TDT had much lower scores of 69.2 and 69.3, respectively 12 . Adolescent TDT patients had lower total, environmental, and psychological HRQOL scores compared to healthy controls 18 . In a meta‐analysis examining HRQOL using SF‐36, it could be seen that patients with TDT had worse physical, mental, and overall HRQOL 65 .…”

Section: Resultsmentioning

confidence: 99%

“…environmental, and psychological HRQOL scores compared to healthy controls. 18 In a meta-analysis examining HRQOL using SF-36, it could be seen that patients with TDT had worse physical, mental, and overall HRQOL. 65 These patients with TDT had HRQOL scores significantly lower than the UK general population, Norwegian general population, and the UK population with type-2 diabetes.…”

Section: Zhai Et Al 2023 46 (China)mentioning

confidence: 99%

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

Shah,

Badawy

2024

Annals of the New York Academy of Sciences

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Health‐related quality of life (HRQOL) is a patient‐reported outcome that assesses the impact of a disease or illness on different domains of a patient's life. Different general and disease‐specific measures can be used to evaluate HRQOL. This article aimed to summarize the evidence for HRQOL among patients with transfusion‐dependent (TDT) and non‐transfusion‐dependent thalassemia (NTDT). We included HRQOL data related to standard therapy with blood transfusions, iron chelation, and/or luspatercept in TDT and NTDT, as well as curative therapies for TDT, including hematopoietic stem cell transplant (HSCT) and gene therapy. Patients with thalassemia had worse HRQOL scores compared to the general population, and chronic pain was seen to increase in frequency and severity over time with age. NTDT patients reported worse physical health and functioning, mental health, general health, and vitality than TDT patients. However, TDT patients reported worse pain, change in health, and social support than NTDT. Most therapies improved overall HRQOL among thalassemia patients. Deferasirox, an oral iron chelator, was associated with more HRQOL benefits compared to deferoxamine, an intravenous iron chelator. Luspatercept showed clinically meaningful improvement in physical functioning among TDT and NTDT. Furthermore, HSCT and gene therapy were associated with better physical, emotional, and mental domains scores.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Zhai Et Al 2023 46 (China)mentioning

confidence: 99%

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

Shah,

Badawy

2024

Annals of the New York Academy of Sciences

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“…Hence, this could have contributed to the comparatively “higher” QOL scores. We are uncertain whether they are able to maintain or improve their QOL further as they grow older especially when some people with TDT could have been using defective coping strategies since teenage years as reported in some studies [ 13 , 31 ]. They have to learn to juggle between staying healthy with the disease and doing well with normal activities.…”

Section: Discussionmentioning

confidence: 99%

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

Chean

Rahim

et al. 2022

Health Qual Life Outcomes

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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.

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“…While the participants in this study are trying to manage their health as seen in other published articles [28][29][30], their coping abilities may burn out when support and guidance from health care and society remain inadequate. Studies have reported that thalassaemic adolescents have negative coping abilities and used inappropriate approach when faced with stresses in life [31], probably due to over-protective parents and over-dependency on their parents since childhood [10]. On the other hand, an endless assistance could make them less dependent on themselves.…”

Section: Discussionmentioning

confidence: 99%

Quality of Life and Challenges Experienced by the Surviving Adults With Transfusion Dependent Thalassaemia in Malaysia: A Cross Sectional Study

et al. 2021

Preprint

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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 We contacted all regional Thalassaemia societies in Malaysia to invite TDT members aged 18 or over to participate. Participants were also recruited from the two participating hospitals. A self-administered questionnaire including ‘CDC Healthy-days’, WHOQOL-BREF and employment measurements was used. Multiple linear regression models were fitted with associations adjusted for several potential confounders. Results Of the 196 participants, almost half (45%) had comorbidities and 20% suffered multiple types: 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 a mean 3.1 (SD 3.0) days of feeling unhealthy physically, a mean 2.6 (SD 3.5) days mentally unhealthy and their normal daily activities performance were affected for approximately 2.5 (SD 3.3) days - leading to 36% being jobless and 38% of those with a job receiving salaries below RM1000. The mean quality of life (QOL) score (mean (SD) for each QOL domain was: physical health 62.6 (15.5), psychological health 64.7 (15.7), social relationship 64 (15.9), environmental health 60.8 (16.7). Frequent activities limited days, being single, unwillingness to disclose thalassaemia status, presence of comorbidities, discrimination experiences and perceptions about employment difficulties were associated with lower QOL scores. Dissatisfaction with health service provision, conflicting judgement in prioritising between health and job, and poor public empathy were expressed. Conclusion Adults with TDT appeared to be fairly positive about their life in spite of high number of dysfunctional days and had perceptions that health services do not meet their needs. They continued to face life disruption in a rather non-supportive community. Supportive approaches and life-skill training are necessary where interventions should be started during childhood. Adjustment to health services should be considered.

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The Relation between Different Aspects of Quality of Life with Coping Style in Adolescents with Thalassemia in Comparison to a Healthy Group

Cited by 8 publications

References 15 publications

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

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

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

Quality of Life and Challenges Experienced by the Surviving Adults With Transfusion Dependent Thalassaemia in Malaysia: A Cross Sectional Study

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