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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