تقييم نوعية حياة مرضى التليف الكيسي في الضفة الغربية والخيارات العلاجية الجديدة
Assessing Quality of life of Cystic Fibrosis patients in West Bank and New Therapeutic Options
ساميه عزت محمد صلاح
Samya Izat Mohammed Salah
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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 .