thalassemia, nursing

The Egyptian Journal of Hospital Medicine (October 2017) Vol. 69 (7), Page 2814-2818

2814

Received:21 /09/2017 DOI: 10.12816/0042571

Accepted:30 /09/2017

Assessment of Patients with Beta-thalassemia Ahmad Hameed Allehaiby

1 , Sarah Musaed Alluheibi

2 , Sarah Mohammed Alnassar

3 ,

Mansor Ahmed Bayydih 4 , Mohammad Mabrook S Almohammadi

5 , Layla Mohammed

Alnashry 6 , Abdulrahim Abdullatif Alomair

7 , Mazen Mosfer A Alzahrani

8 , Rawan Ezzi

Abufaia 9 , Riyad Mohammed Alhajji

10 , Meshal Fahad M Alshamrani

11 ,

Omar Hasan Abdullah Badahman 11

, Haitham Musaad A Aloraini 12

1- Primary Health Care, Jeddah, 2- Primary Health Care, Mecca, 3- Obhur PHC, 4- Sabya PHC, 5- Elixir Medical Center, 6- University of Tabuk, 7- King Faisal University, 8- Al-Azizyah Maternity& Children

Hospital Jeddah, 9- Asfan PHC, 10- Alomran Center, 11- King Abdulaziz University, 12- Almaarefa College

ABSTRACT

Background: Thalassemia major has become a public health problem worldwide, mainly in developing

and poor countries, while the role of educating the family and community has not been considered enough

in patients’ care. Purpose: This study was done to examine the impact of partnership care model on mental

health of patients with beta-thalassemia major. Materials and Methods: This experimental study, with

pretest and posttest design, was performed on patients with beta-thalassemia major in Jeddah city. 40

patients with beta-thalassemia major were assigned randomly into two groups of intervention (20 patients)

and control (n=20) groups. Mental health of the participants was measured using the standard questionnaire

before and after intervention in both groups. The intervention was applied to the intervention group for 6

months, based on the partnership care model. Results: There were significant differences between the

scores of mental health and its subscales between the two groups after the intervention (𝑃< 0.05). Conclusions: The findings of the study revealed the efficacy and usefulness of partnership care model on

mental health of patients with beta-thalassemia major; thus, implementation of this model is suggested for

the improvement of mental health of patients with beta-thalassemia major.

Keywords: Beta-thalassemia, mental health, DeferoxamineMesylate.

INTRODUCTION

Thalassemia is a public health problem

worldwide, mainly in developing countries [1]

.

According to the World Health Organization

report, more than 15 million people suffer from

thalassemia worldwide [2]

and annually about 56

thousand children are born with it in the world [3]

.

This disease is a major problem, not only for

patients and their families, but also for public

health system in any country, bearing in mind the

care and treatment costs; containing regular

infusions of DeferoxamineMesylate (desferal),

recurrent hospitalization, and other medical

procedures [4, 5]

. The aim of the treatment is to

preserve hemoglobin levels at at least 10 g/dL in

both genders. The blood volume for transfusion

was calculated based on the patient’s hemoglobin

(10–15 mL/kg). Treatment with chelators starts

after the first 10–20 blood transfusions or when

blood Ferritin level reaches more than 1000 ng/mL

[10]. Intravenous chelators are routinely used in

chelation therapy. Oral or combined chelator’s

therapy is used when the patient is unable to

tolerate the intravenous chelators or when

sufficient intravenous chelators are not obtainable.

Deferoxamine is injected subcutaneously using an

injection pump at a rate of 20–60 mg/kg of body

weight usually over 8- to 12-hour period, and 3 to

5 times a week [6]

. Complex medical care and life

long unpleasant clinical self-management regimen

have adverse effects on mental function and mood

of patients and their families [7, 8]

.

Studies have presented that these patients

suffer from psychological issues, such as anxiety

and depression, and might be easily hurt by these

problems [8]

. Another important point is that this

disease affects the patients’ health and causes

physical disorder, growth retardation, and late

puberty [9]

which affects their self-conscious and

will eventually rise the patient’s anxiety and

negatively affect their lives [10]

.

In developing countries, adults with

thalassemia major are not treated due to absence of

public consciousness and inaccessibility of drugs

and experience mood disorders, including despair,

isolation, depression, hostility, sadness, anxiety,

fear of death, lack of self-esteem, and anger [11]

.

Alternatively, complications of this ailment

increment with age and make the patient more

tired [12]

. This issue will disrupt the self-care and

psychomental status and interrupt the treatment

procedure. Nurses are on the front lines of

providing care to the patients and witnessing the

patients’ problems. They need to know about the

patient’s psychomental status in order to provide

the most appropriate care plan. In addition, the

Assessment of Patients with Beta-thalassemia

2815

knowledge about these kinds of difficulties can aid

nurses to improve the quality of care in ways that

enhance quality of life in patients. Endemic care

protocols can be an appropriate guide for

improvement of care. Therefore, this study aimed

to utilize an endemic model, name partnership care

model for patients with thalassemia major, and

appraise its influence on mental health (depression

and anxiety) of these patients. Partnership care

model was first developed, implemented, and

evaluated (13)

. In this model, the theory of

collaboration in the care has been processed. In the

care process, the quality and type of

communication between the two sides of the

relationship are vital. In this regard, knowledge,

skill, and special tools for treatment and care are

the next important issues. Originality and

effectiveness of care depend on the correct and

favorable formation of nature and quality of care.

Therefore, the partnership care model is a regular

process for efficient, interactive, and persistent

communication between the patient and the nurse

to identify the needs and problems and sensitizing

the patients to accept continuous health behaviors

and help improve their health. The objectives of

this model were : (1) to establish an efficient,

interactive, and persistent relationship between

team members in the process of care and treatment,

(2) to increase the cooperation, team motivation,

and accountability in the process of care and

treatment, (3) to increase satisfaction and quality

of life of patients, and (4) to reduce complications

and risk factors. To achieve the purposes of the

model, the designed steps have been arranged in a

regular structure, which acts as interconnected and

dynamic series, through observing the relationship

and logical and evolutionary sequence. These

steps included : (1) motivation, (2) readiness, (3)

involvement, and (4) evaluation, which is

predicted for each specific action program [13, 14]

.

This study investigated the effect of this model on

the mental health of patients with thalassemia

major. We hypothesized that the partnership care

model could improve both the overall health and

quality of life of patients.

METHODS

This experimental study with pre test and

post test design was conducted in Jddah City KSA,

on patients with beta-thalassemia major. The study

population included patients with beta-thalassemia

major who referred to King Abdulaziz Hospital,

which included 40 patients of the study sample.

The samples were allocated randomly into two

groups of intervention (20 patients) and control (𝑛 = 20) groups. Partnership care model (motivation,

readiness, involvement, and evaluation) was

conducted for 6 months for the intervention group.

Inclusion criteria for this study consisted of

patients with thalassemia major, receiving

intravenous chelators (Deferoxamine), with the

ability to communicate and give information and

no history of psychiatric illness.

In the demographic questionnaire, variables

such as age, gender, marital status, education level,

age at diagnosis, history of other diseases, and

family status were evaluated. By the questionnaire,

data related to health (including mental health)

were collected. The data gathered in this study

included demographic questionnaire and the

standardized questionnaire GHQ-28. Demographic

questionnaire was developed by researchers based

on scientific resources and on the objectives of the

study. The questionnaire included questions about

age, gender, marital status, education, family

status, age at diagnosis of thalassemia, and history

of other diseases. Content validity was determined

using comments of 10 relative nursing faculty

members and four blood specialists and

psychiatrists. To determine reliability, test-retest

was used. GHQ-28 questionnaire was designed in

1979 by Goldberg and Hiller to screen non

psychopathic psychological disorders and includes

four subscales: physical complaints, symptoms of

anxiety, social dysfunction, and depressive

symptoms. Each subscale consists of 7 statements

and each statement is scored on a Likert scale of

0–3 points and higher scores indicate poorer

mental health. In each subscale, scores over 6 and

total scores above 22 indicate disease. Goldberg

calculated and confirmed Cronbach’s alpha

coefficient of 0.89 for this tool [15]

and the test-

retest, split-half reliability, and Cronbach’s alpha

coefficients were 0.70, 0.93, and 0.90, respectively,

and concurrent validity of the questionnaire was

determined at 0.55 [16]

. Researchers have

introduced the GHQ-28 tool as the best tool in the

age group 12–18 years [17, 18]

.Data was analyzed

using SPSS 20 software, paired 𝑡-test, independent 𝑡-test, and chi-square analysis. 𝑃< 0.05 was considered as statistically significant.

RESULTS

Mean age of patients in the intervention group

was 15.1 ± 4.25 and in the control group was 14.9

± 3.55 (𝑃> 0.05). There was no significant difference between the two groups regarding

gender, education, and age at diagnosis (Table 1).

After the implementation of partnership care

model, there was statistically significant difference

between scores of mental health and subscale for

symptoms of anxiety, depressive symptoms, social

dysfunction, and physical complaints between the

two groups (𝑃< 0.05) (Table 2).

Ahmad Allehaiby et al.

2816

Table 1: The comparison of the variables between the experimental and control groups

Variable groups Intervention group n=20

(%)

Control group n=20

(%) Statistical test and 𝑃 value

Gender      

Male 10 (50) 11 (55) Fisher

Female 10 (50) 9 (45) 𝑃 = 0.59 Education      

Primary school 15 (75) 15 (75) 𝜒2 = 7.74 Secondary school 4 (20) 3 (15) df = 4

High school 1 (5) 2 (10) 𝑃 = 0.101 Age at diagnosis      

<1 year 15 (75) 16 (80) 𝜒2 = 8.94 1–3 years 2 (10) 1 (5) df = 6

3–5 years 3 (15) 3 (15) 𝑃 = 0.173 History of other diseases      

Negative 15 (75) 16 (80) 𝜒2 = 8.94 Diabetes 1 (5) 1 (5) df = 6

Kidney disease 3 (15) 3 (15) 𝑃 = 0.173 Liver disease 1 (5) 0 (0.0)

Family status     𝜒2 = 2.21 Living with two parents 18 (90) 19 (95) df = 2

Living with one parent 2 (10) 1 (5) 𝑃 = 0.319

Table 2: Comparison of mental health and its subscales in the intervention and control groups before and

after intervention

Variable Group Intervention Control Independent 𝑡-test

Mean ± SD Mean ± SD

Physical complaints Before 5.9 ± 0.63 5.8 ± 0.70 𝑇 = 0.64, 𝑃 = 0.50

After 3.8 ± 0.56 5.7 ± 0.65 𝑇 = 1.19, 𝑃 = 0.006

Paired 𝑡-test 𝑇 = 10.5, 𝑃 = 0.000 𝑇 = 1.34, 𝑃 = 0.17

Anxiety Before 8.5 ± 1.11 8.8 ± 1.20 𝑇 = 0.42, 𝑃 = 0.90

After 5.3 ± 1.56 9.1 ± 0.71 𝑇 = 7.2, 𝑃 = 0.017

Paired 𝑡-test 𝑇 = 7.7, 𝑃 = 0.000 𝑇 = 1.8, 𝑃 = 0.108

Social dysfunction Before 9.7 ± 0.91 9.8 ± 0.39 𝑇 = 0.37, 𝑃 = 0.77

After 7.1 ± 1.74 9.2 ± 0.21 𝑇 = 2.20, 𝑃 = 0.072

Paired 𝑡-test 𝑇 = 5.0, 𝑃 = 0.007 𝑇 = 1.49, 𝑃 = 0.23

Depression Before 10.7 ± 1.29 11.0 ± 0.69 𝑇 = 0.29, 𝑃 = 0.12

After 4.3 ± 1.13 11.1 ± 0.43 𝑇 = 5.19, 𝑃 = 0.008

Paired 𝑡-test 𝑇 = 8.4, 𝑃 = 0.001 𝑇 = 1.0, 𝑃 = 0.36

Total score of mental health Before 35.1± 7.29 35.4 ± 7.83 𝑇 = 0.72, 𝑃 = 0.41

After 11.3 ± 3.04 35.3 ± 6.98 𝑇 = 7.9, 𝑃 = 0.004

Paired 𝑡-test 𝑇 = 48.9, 𝑃 = 0.000 𝑇 = 1.0, 𝑃 = 0.39

DISCUSSION

In the current study, mental health scores in

thalassemia patients were higher in both groups

before intervention than the cut-off point that

validated poor mental health status of the patients.

Naderi et al.’s study [19

showed that more than

half(50.6%) of patients with thalassemia suffer

from mental disorders (19). Other similar studies,

along with the high prevalence of mental health,

have reported high number of such disorders (such

as anxiety and depression) demanding extensive

follow-up [11, 20]

. Sadowski et al.’s Anther study [21]

demonstrated that mental health issues in

thalassemia patients (47.4%) is not only higher

Assessment of Patients with Beta-thalassemia

2817

compared to healthy controls (26.3%), but similarly

significantly higher than hemophilia patients

(24.6%) (21) .

In the present study, the subscales

(symptoms of anxiety, social dysfunction,

depressive symptoms,and physical complaints) in

both groups before the intervention were higher

than the specified cut-off point indicating

impairment in these subscales. Salehi et al.’s A

study [22]

displayed that a high percentage of

thalassemia patients were supposed to have or

suffering from physical problems as a result of the

influence of the disease on their presence, early

fatigue, headache, or anemia. Research has shown

that thalassemia major can have a devastating

impact on social activities of patients [1]

; for

instance, Sadowski et al.’s study [21]

indicated

severe physical health problems in patients with

thalassemia increase over time compared to healthy

subjects, leading to social dysfunction and

exacerbation of psychiatric disorders such as

depression and anxiety( 21) . The outcomes of

multiple studies revealed that the pervasiveness of

depression and anxiety is significantly greater in

patients with thalassemia than in healthy controls.

This anxiety might be as a result of fear of early

death, repeated blood transfusions, negative self-

thoughts, concern in family formation, and different

feelings in these patients [10]

.In the present study,

amongst the subscales, the highest score was allied

to depression. Research has shown relationship

between thalassemia major and depression [23]

.

Depression is confirmed as the most common

psychiatric disorders in thalassemia patients in other

studies [19]

. In the study of Marvasti et al.’s [24]

, the

danger of depression was much higher in patients

with thalassemia compared to healthy subjects (24)

.

Keşkek et al.’s study [23]

displayed It was found

that not only is the pervasiveness of depression

higher in patients with thalassemia compared to

healthy subjects, but the severity of depression is

also alarmingly higher in patients with thalassemia

which needs urgent measures in these patients (23)

.

Depression has negative and severe impacts on

physical and mental health, which may be as a

result of chronic nature of the ailment the changed

appearance, long treatment period, early death

expectation,sense of deprivation, and social

reflections, for example, family, community, and

school [25]

.

Our study showed that the implementation

of partnership care model is able to significantly

improve the mental health of patients with

thalassemia. Ratanasiripong et al.’s study [26]

showed that application of educational feedback

program significantly decreased anxiety,stress, and

depression (26)

.Alijany-Renany et al.’s [13]

demonstrated that the quality of life of children

with thalassemia considerablyenhanced, compared

to control group and before intervention and after

implementation of partnership care model ( 13)

.

Ghavidel et al. [27

showed that the implementation

of partnership care model resulted in significant

improvement in quality of life of hemodialysis

patients in all aspects of physical, mental, and

general health and life force and energy (27)

.

Partnership care model was like wise shown on

other patients. A significant and positive outcome

of the implementation of this model was approved

on improving the quality of life of patients with

hypertension, coronary arteries, chronic

bronchiolitis, and stroke [28]

. This model was

implemented by Mamene et al., who concluded

that this model will correct the lifestyle in several

indexes and diet behavior [29]

. Nayyeri et al.’s study

30] displayed that the implementation of partnership

care model is effective in increasing the quality of

sleep in patients with heart failure (30)

. The

outcomes of all these studies, are similar to our

study, which indicate the promising effect of the

implementation of this model in different diseases.

Konstam et al. [31]

demonstrated that educating the

approaches of controlling anxiety and cognitive

treatment interventions can aid special patients

recognize the physical and mental reasons of

anxiety and depression and the ultimate response of

these patients to education of the approaches is

reduced anxiety and depression (31).

CONCLUSION

The results of the current study showed that

patients with thalassemia major are faced with

severe mental health problems, particularly

depression, which necessitates planning of the

authorities and using experienced consulters to

educate life skills and how to face psychological

and social problems to avoid and treat

psychological disorders in these patients. Similarly,

the findings of the current study showed that

partnership care model is effective and useful in

improving the mental health of patients with

thalassemia major; therefore, regarding the efficacy

of this model, besides its inexpensiveness and

simplicity for families and children, implementation

of such program is recommended for improvement

of mental health of patients with thalassemia.

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