تقييم نوعية حياة مرضى التليف الكيسي في الضفة الغربية والخيارات العلاجية الجديدة
Date
2017-10-07
Authors
ساميه عزت محمد صلاح
Samya Izat Mohammed Salah
Journal Title
Journal ISSN
Volume Title
Publisher
AL-Quds University
جامعة القدس
جامعة القدس
Abstract
Background
The number of cystic fibrosis patients is increasing around the world, Latest forecasts
published in the European Respiratory Journal indicate an increase of approximately
50% by 2025 (20% in the child population; 75% in the adult population).
There is no accurate epidemiological data on CF disease in Palestine. The general
impression has been that the disease is rare, but this is most likely the result of underdiagnosis
or misdiagnosis due to limited awareness of the condition in the region.
This disease has high treatment burden and some of the novel technology used for
drug delivery is highly beneficial because it may ease patient burden by decreasing
administration time and offer more efficacy and safety. These options are not
available for CF patients in Palestine, only basic traditional therapies are available and
this is the fundamental problem.
Assessment of the patient's perspective of symptom improvement, satisfaction and
their reported increase in health related quality of life (HRQoL) should be part of the
treatment decision making. Most of the cystic fibrosis patients QoL studies have been
conducted in developed countries and only a few in developing countries but no
studies were done in Palestine.
Objective
The purpose of this project was to study the Palestinian health situation by using
specific comparison tools including; Quality of life issues of Palestinian CF patients
attending the Caritas baby hospital, their health status, their related cost effective
treatment (Economical burden) and summarize the available evidence on the use of
new options for the treatment by using a willingness to pay survey.
MethodA descriptive narrative study conducted for patients from West Bank suffering from
cystic fibrosis disease. These patients used basic classic therapies and attending
pediatric pulmonology clinic in Caritas Baby Hospital. Around 77 participants
completed four quantitative assessment measures and provided demographic
information. The status of CF patients were studied by using different aspect. Their
quality of life score using CFQ-R questionnaire were measured. Their health status
were screened by measuring different parameter; pulmonary function test, body mass
index, their age at diagnosis and mortality rate related to CF disease. Their health
related cost and the amount of money they are able to pay for improving their
treatment options using a willingness to pay survey were calculated. Caritas Baby
Hospital (CBH) Medical Research Committee/Ethical Review Board approved this
study and a written informed consents form for the patients and their families were
obtained. Results were analyzed using scoring software and SPSS softwareResults and conclusion
The overall score for CF patients QoL parameters is less than 60% (ranges from 14.5-
55.6) which indicate poor quality of life relative to other countries worldwide. The
lowest score is for body (14.5), treatment (17.5), and respiratory (27.5). The highest
score appears to be for eat (55.6) and emotion (50). Illness severity as measured by
FEV1 percent predicted with mean value of 69.6%. BMI recorded with mean value
15.998 (Kg/m2
). With the overall mean age at diagnosis in our sample was 4.16 years
of age. The study showed that 58.3% (7/12) of patients from Hebron district had high
mortality rate related to CF disease.
The result revealed that quality of life for CF patients is influenced by age, gender,
taking vacation without disease, work or school status, BMI measures, age at
diagnosis for the patient's parameters. In addition, QoL as scored by their parents
parameter which included: the age, educational level and work status of both parents
and is also affected by total number of CF patients in each family.
QoL for CF patients is not influenced by marital status, geographic distribution, place
of residency (city, village and camp), FEV1 measures, willingness to pay answers,
their parent's relationship (father or mother), monthly income, and the effect of taking
influenza vaccine yearly.
For willingness to pay, results indicate that 93.5% said yes and 6.5% said no. 51.4%
of patients are able to pay 100 NIS out of pocket to 2.7% able to pay 2000 NIS or
more out of pocket to get new drugs. With economical evaluation for CF patient, the
total costs for patient with the mean age of our sample 10.7 years of age were
estimated to be around 35650.2 NIS per patient per year. Cost reduction were
estimated after applying Dornase-alfa as a mucolytic drug and Tobramycin nebulizer
solution. This added value can help in part of the cost for making these drugs
available for CF patients in our region.
Overall, quality of life for patients with CF is poor relative to international standards,
the medications used including Hypertonic saline and Gentamycin IV form used asnebulizer solution are not first line therapies around the world, patients and their
families demand better treatment and are willing to pay to get better treatment. Now
we have an objective proof to submit for the need of new therapies for CF patients in
Palestine in order to improve their QoL, health status and longevity .
Description
Keywords
العلوم الصيدلانية , Pharmaceutical Sciences