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Quality of life thalassemia patients health and social care essay

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Thalassemia is familial upset of blood characterized by anaemia. It is the most common individual cistron upset in the universe with bulk of new instances in the development states. Thalassemia is a chronic disease in which patients can non do plenty good quality haemoglobin to prolong life. Therefore these ruddy cells break down prematurely ensuing in terrible anaemia.


It is prevailing in the antecedently malaria endemic zones all over the universe. The planetary thalassaemia bearer frequence is about 5 % . It is widely prevailing in Bangladesh with bearer frequence of 7 % among which 4 % HbE bearers and 3 % beta thalassaemia bearers. It is estimated that 7000 new babes born with thalassaemia each twelvemonth. Thalassemia patients undergo womb-to-tomb blood transfusion and Fe chelation.

WHO defines quality of life as “ an person ‘s perceptual experience of their place in life in the context of the civilization and value systems in which they live and in relation to their ends, outlooks, criterions and concerns. It is a wide ranging construct affected in a complex manner by the individual ‘s physical wellness, psychological province, personal beliefs, societal relationships and their relationship to salient characteristics of theirenvironment. “ 1


Hemoglobin upsets are an emerging planetary wellness job. The quality of life surveies in developed states revealed important lessening in QOL due to hard and long term intervention. Though the disease is rather common in Bangladesh, there was no survey conducted onhealth-related quality of life ( HRQOL ) in Bangladesh and hazard indexs associated with it.

There is scarceness of published research in thalassaemia in Bangladesh. A PubMed hunt with keyword ‘Thalassemia Bangladesh ‘ returned merely 13 consequences.

Most diseases have a major impact on the afflicted single above and beyond mortality. Diseases that may non be deadly may be associated with considerable agony and disablement. For this ground, it is besides of import to see the impact of a disease as measured by its consequence on a individual ‘s quality of life, even though such step are non, in fact, steps of disease happening. For illustration, it is possible to analyze the extent to which patients with thalassemia rheniums compromised by the unwellness in transporting out activities of day-to-day life. Although considerable contention exists about which quality of life steps are most appropriate and valid there is general understanding that such steps can be reasonability used to be after short-run intervention plan for groups of patient. Such patients can be evaluated over a period of months to find the consequence of the intervention on their ego reported quality of life. Quality of life steps have besides been used for set uping precedences for scarce wellness attention resources. Although prioritization of wellness attention resources is frequently chiefly based on mortality informations, because many diseases are chronic and non life threatening, quality of life must besides be taken into history for this intent. Patients may put different weights on different quality of life steps depending on cultural background, instruction, and for illustration, spiritual values. As a consequence mensurating quality of life and developing valid indices that are utile for obtaining comparative informations in different patients and in different populations remain a major challenge.

Operational Definition of the Variables

Health Related Quality of Life ( HRQOL ) : Individual ‘s ability to map physically, emotionally and socially within his/her environment at a degree consistent with his or her outlook measured utilizing structured and good validated tool PedsQL.

Age: Age of the respondent calculated in old ages by subtracting day of the month of birth from day of the month ofinterview. If day of the month of birth is non available, age in accomplished old ages is taken alternatively.

Highest instruction: Highest formal instruction of the respondent calculated in figure of old ages.

Area of abode: Residence of the respondent in footings of belonging to metropolis, town and small town. City is defined as the big and of import town such i. e. divisional centres. Town is defined as the population centre smaller than metropolis i. e. territory central office.

Highest instruction of household caput: Highest formal instruction of the household caput calculated in figure of old ages.

Familyincome: Monthly income of the caput of the household along with income of the other household members.

Number of siblings: Number of siblings of the respondent.

Number of thalassemics among the siblings: Number of siblings enduring from thalassaemia other than the respondent himself.

Type of thalassaemia: Respondent or parent reported thalassemia type as diagnosed in the haemoglobin cataphoresis. The common types are Beta thalassaemia and Hb E beta thalassaemia.

Age of diagnosing: The age at which thalassaemia was foremost diagnosed in the respondent.

Blood group: Blood group and Rh type of the respondent.

Requires blood transfusion: Weather the respondent requires blood transfusion of keeping life.

Age of first transfusion: The age at which the respondent received foremost blood transfusion.

Transfusion interval: Respondent or parent reported usual interval between blood transfusions.

Pre-transfusion hemoglobin degree: Respondent or parent reported pre-transfusion haemoglobin degree during last 3 months.

Duration since last transfusion: Duration since last blood transfusion calculated from last day of the month of transfusion as reported by respondent or parent.

Serum ferritin degree: Serum ferritin degree in ng/L in last six month as reported by the respondent or parent.

Type of Fe chelator: Type of Fe chelator taken by the respondent. The options are desferrioxamine, deferiporne, deferasirox or combination of these drugs.

Regularity of Fe chelator: Weather the respondent takes the drugs daily or as prescribed.

Splenectomy: If splenectomy was done.

Date of splenectomy: Date or twelvemonth of the splenectomy as reported by respondent or parent.

Complications i. e. Hepatitis B, C: Weather any complication ensuing from intervention of thalassaemia is present i. e. hepatitis B, hepatitis degree Celsius, diabetes, bosom disease, hypothyroidism and growing deceleration.

Visit to specialist physician for thalassaemia: If the respondent visits specialist physician for thalassaemia and continuance since last visit to a specializer physician.

Height: Height of the respondent measured in centimetre utilizing height base.

Weight: Weight of the respondent measured in kg utilizing bathroom graduated table.

Liver size: Size of the liver in centimetre signifier costal border along the mid costal line.

Spleen size: Size of the lien in centimetre from the costal border along the axis of the spleen towards navel.

Facial alterations: Facial alterations scored harmonizing to three standards i. e. bossing of the skull, giantism of zygoma, dental malformation. Each standard was scored 0-4 and amount of all standards used as the concluding mark.

Review of Related Literature

It is estimated that more than 300, 000 kids are born with familial disease of haemoglobin each twelvemonth among which about 80 % born in low to income countries.

A survey of hurting in the thalassaemia patient used SF-36v2 wellness study for adult/adolescent and kids were used PF-28 child wellness questionnaire. 4

Iron Chelation Therapy



The progress in the intervention of thalassaemia have resulted in increased life anticipation 5. The drawn-out life ps have exposed antecedently unidentified issues like bodily hurting. A survey conducted in the Thalassemia Clinical Research Network ( TRCN ) among 265 adults/adolescent and 103 kids with thalassemia 69 % of adult/adolescent reported bodily hurting with at least 28 % reported at least moderate hurting. Parent reported hurting in 56 % of kids while merely 11 % reported pain reasonably frequently. Though there was no difference in the hurting in kids with thalassaemia compared with the general population, hurting increased significantly with age. The survey besides showed that increased hurting is associated with lessening in quality of life and increased anxiousness anddepression. 4


This survey was done to happen out the wellness related quality of life of the thalassaemia patient in the selected centres in Dhaka metropolis and hazard indexs associated with it. The undermentioned methodological analysis was followed to carry on the survey.

A cross-sectional survey was designed to measure the HRQOL and associated hazard indexs.

Figure 1: Conventional diagram of a cross-sectional survey

The entire survey period accounted 6 months from January 2010 to June 2010. During this period a scope of activity was undertaken get downing from title choice, protocol readying, protocol presentation, informations aggregation, informations cleansing, information analysis, study composing and printing. The clip allocated for informations aggregation by class coordinator was from 18 April 2010 to 7 May 2010. The elaborate work agenda is appended in AnnexureA -A 1.

This survey was done on thalassaemia patients came at 3 centres in the Dhaka metropolis viz. ASHA -Thalassemia Center, Bangladesh Thalassemia Society and Thalassemia Hospital and Red Crescent Blood Center. Dhaka Shishu Hospital Thalassemia Center was planned as one of the sites in the initial protocol, but the establishment declined the research worker for informations aggregation. Therefore it was replaced with Red Crescent Blood Center with permission from research usher.

The survey population included all the patients coming to the survey location for outpatient audience and blood transfusion.

A convenient sampling was done. All available instances within the informations aggregation period were included in the survey. Overall 120 instances were included in the survey.

Development of Research Instrument

A pretested semi structured Bangla questionnaire and checklist was used for informations aggregation. The variables were identified harmonizing to the specific aims and taking the of import variables into consideration which reveled in the literature reappraisal. Then appropriate graduated tables of measuring for these variables were identified and English questionnaire was drafted. After necessary rectification and tuning the English questionnaire was translated into Bangla. The questionnaire was so reviewed by research usher and co-workers of the research worker.

The PedsQL Core scales 6-11 by James W. Varni was used for appraisal of quality of life with due permission from the writer. The tool consists of 4 ( four ) graduated tables for different age group i. e. Young grownup ( 18-25 ) , adolescent ( 13-18 ) , kid ( 8-12 ) , immature kid ( 5-7 ) .

The interlingual rendition of the instrument was carried out harmonizing to the lingual guideline sent by the writer. The purpose was to develop a questionnaire which is conceptually tantamount to the original version, every bit good as clear and easy to understand. The interlingual rendition procedure consisted of three stairss –

Forward Translation

Backward Translation

Patient Testing

In each measure a interlingual rendition study was prepared and sent to writer. For interlingual rendition of the PedsQL to Bangla, the research worker appointed two transcribers viz. Dr. Jenny Roslin D’costa and Dr. Tareq Salahuddin and himself acted as the undertaking director for the interlingual rendition procedure as stipulated in the lingual proof guideline. Each the transcriber was given the 4 ( Young grownup, adolescent, kid, immature kid ) original PedsQL graduated tables for different age group along with the lingual proof guideline. They were asked to interpret independently. After completion of the interlingual rendition a meeting was arranged on 16. 04. 2010 for rapprochement of the interlingual renditions.

The undertaking director went through all 4 graduated tables one by one. There was no major dissension among the transcribers. They agreed to alter some of the words with equivalent word and rephrased some of the instructions and inquiries. Both the transcriber translated “ walk more than one block ” literally. The undertaking director pointed that actual interlingual rendition of western block will transport no significance in Bangla and among the mark population. Therefore he suggested it to be replaced with Bangla equivalent. He quoted Wikipedia mention below to explicate the significance of block.

Since the spacing of streets in grid programs varies so widely among metropolis, or even within metropolis, it is hard to generalise about the size of a metropolis block. However, as mention points, the standard block in Manhattan is about 264 by 900 pess ( 80 m A- 270 m ) ; and in some U. S. metropolis criterion blocks are every bit broad as 660 pess ( 200 m ) . The blocks in cardinal Melbourne, Australia, are 660 by 330 pess ( 200 m A- 100 m ) , formed by dividing the square blocks in an original grid with a narrow street down the center. ”

The transcriber discussed the issue and replaced block with “ walking more than 100 paces ” which is frequently used in Bangla to intend “ walk a short distance ” . After alteration of all four graduated tables ( Young grownup, adolescent, kid, immature kid ) version -1 of each paperss was prepared.

Dr. Md. Rajib Hossain was appointed for the backward interlingual rendition of Bangla VersionA aˆ‘ A 1 of the PedsQL graduated tables ( Young grownup, adolescent, kid, immature kid ) and research worker himself acted as the undertaking director. He was besides given the lingual proof guideline and asked non to entree the original graduated tables from cyberspace. After completion of the interlingual rendition a meeting was arranged on 17. 04. 2010 to compare his interlingual rendition with the original graduated tables. The consequence of the treatment in the meeting is documented in the undermentioned subdivision.

The rubric contrary translated as “ list ” alternatively of “ stock list ” . This is due to non holding a similar word Bangla word. The closest interlingual rendition was synonymous to “ name ” and Dr. Hossain accepted it.

In the Young Adult Report, Teen Report and Child Report “ walking more than one block ” , which was changed to “ walking more than 100 paces ” in forward interlingual rendition due to cultural differences was rearward translated same. Dr. Hossain besides agreed on the alterations made. The point 8 “ I have low energy ” was reverse translated as “ I feel weak ” . Therefore the interlingual rendition in version 1 was updated in version 2 which literally translates to “ I have low energy ” . In the emotion subdivision, point 4 “ I worry what will go on to me ” translated back as “ I get dying about my hereafter ” but it was decided to maintain the current Bangla interlingual rendition. In “ how I get along with others ” point 5, there is non actual interlingual rendition of “ equal ” hence the contrary interlingual rendition was “ others of my age ” which was acceptable. The other differences were considered as normal lexical fluctuations.

In Young Child Report, “ a batch of job ” in the direction subdivision was back translated “ large job ” . In the reply options “ a batch ” was translated as “ many times ” . The difference was due to weak backward interlingual rendition. “ Functioning ” in the subdivision rubrics had no actual Bangla word, which was reflected in each of the subdivision rubric. The difference was acceptable. In the first subdivision “ Physical operation ” , foremost 6 points was translated as interrogative get downing with “ Do you ” . Therefore sentence building was altered to repair it.

The other differences in all the graduated tables were considered normal lexical difference transporting the same significance of the original graduated table. The alterations were incorporated in version-1 of the translated graduated table and the version 2 is produced.

In the patient proving measure, the research worker found that in the Likert graduated table ( 0-4 ) , patients did non understand the difference of “ frequently ” and “ about ever ” clearly. Therefore he suggested interlingual rendition of these two points to be modified which retranslate as “ frequently ” and “ ever ” . However the writer of the tool expressed his concern that altering “ about ever ” to “ ever ” will cut down your responses at that terminal of the graduated table. He advised to return to “ about ever ” which will be helpful in comparing the research worker ‘s findings with other published informations on the PedsQL utilizing a one-sample t-test. The writer suggested utilizing cognitive questioning method to get the better of this issue.

The survey questionnaire was besides pretested along with the PedsQL graduated tables. Entire 37 points were included in the concluding questionnaire after necessary all right tuning.

Datas Collection Plan

The PedsQL Generic mark tool has 4 graduated tables for different age group of 5-7, 8-12, 13-18 and 18-25 old ages. The sale for 5-7 old ages is interviewer administered while remainders are designed to be self administered. However the research worker communicated the writer of the tool about the low literacy rate which may cut down the pertinence of the ego administered tool. The writer provided a Cognitive Interviewing Guideline, which was applied for questioning all the tools.

Data Processing and Analysis Plan

After aggregation, informations were checked exhaustively for consistence and completeness. Datas were cleaned and edited manually. Statistical Package for SocialScience( SPSS ) version 16. 0 for Windowss was used to analyse the information. Descriptive statistics were computed for the demographic variables. Chi-square analysis was carried out to measure the important association of qualitative informations. Datas were presented by tabular arraies and graphs.

Ethical Issues

The survey was done through aggregation of informations utilizing questionnaire and neither any intercession nor any invasive process was be undertaken. However, prior to induction of the survey ethical clearance was taken from NIPSOM ethical commission. Before induction of the interview a brief debut on the purpose and aim of the survey was presented to the respondents. They were informed about their full right to take part or decline to take part in the survey. The research worker besides assured the respondents that there was no invasive process included in the survey and all the findings of the survey will be used to steer the service suppliers and policy shapers for the betterment of thalassaemia intervention. A complete confidence was given to them that all information provided by them will be kept confidential and their names or anything which can place them will non be published or exposed anyplace. Their engagement and part will be acknowledged with due regard. After completion of these processs the interview was started with their due permission.


This cross sectional survey was conducted among 108 thalassaemia patients in three thalassaemia intervention centre in Dhaka metropolis. The information was analyzed utilizing appropriate descriptive and illative statistical process and presented in this chapter utilizing tabular arraies and graphs, harmonizing to specific aims where applicable.

The determination is organized under the undermentioned subdivisions

Socio-demographic features of the respondents

Data was collected on socio-demographic position of the respondents which is shown in the tabular array xx. xx.

The age of the respondent was usually distributed ( One sample Kolmogorov Smirnov Test, P = 0. 28 ) with average 13. 28 old ages and standard divergence A±5. 19 old ages. There was no important difference of quality of life in one manner ANOVA ( F= 1. 68, p= 0. 18 ) among the PedsQL age groups.

Number of thalassaemia among the siblings

Correlation analysis and additive and ordinal logistic arrested development were used to pattern forecaster of hurting. Forecasters important in initial analysis, commanding for age, sex, and state, thalassemia diagnosing, regular transfusion, bone denseness, pre-transfusion haemoglobin degree. Partial correlativity, commanding for age and sex, was used to measure the consequence of hurting on quality of life.

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