After the earthquake: Unmet needs in people with cystic fibrosis in Turkiye- multicenter study
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- Aug 14
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Author links open overlay panelSeyda Karabulut a, Velat Sen b, Beste Özsezen c, Ali Özdemir d, Melih Hangül e, Suat Savas b, Hadice Selimoğlu Sen b, Gaye Inal f, Huseyin Arslan g, Mahir Serbes h, Pelin Asfuroglu i, Ezgi Cay j, Erdem Topal k, Neval Metin Çakar a, Almala Pınar Ergenekon a, Ela Erdem Eralp a, Sedat Oktem l, Zeynep Seda Uyan m, Fazilet Karakoc a, Bulent Karadag a, Yasemin Gokdemir a
a Marmara University, The School of Medicine, The Division of Pediatric Pulmonology, Istanbul, Turkiye b Dicle University The School of Medicine, The Division of Pediatric Pulmonology, Diyarbakır, Turkiye c Dokuz Eylul University, The School of Medicine, The Division of Pediatric Pulmonology, Izmir, Turkiye d Mersin City Training and Research Hospital, The Division of Pediatric Pulmonology, Mersin, Turkiye e Adana City Hospital, The Division of Pediatric Pulmonology, Adana, Turkiye f Gaziantep University, The School of Medicine, The Division of Pediatric Allergy and Immunology, Gaziantep, Turkiye g Hatay Training and Research Hospital, The Division of Pediatric Pulmonology, Hatay, Turkiye h Cukurova University, The School of Medicine, The Division of Pediatric Allergy and Immunology, Adana, Turkiye i Gaziantep City Hospital, The Division of Pediatric Pulmonology, Gaziantep, Turkiye j Hatay Defne Hospital, The Division of Child Health and Diseases, Hatay, Turkiye k İnönü University The School of Medicine, The Division of Pediatric Pulmonology, Malatya, Turkiye l Medipol University, The School of Medicine, The Division of Pediatric Pulmonology, Istanbul, Turkiye m Koc University, The School of Medicine, The Division of Pediatric Pulmonology, Istanbul, Turkiye
Received 17 February 2025, Revised 23 June 2025, Accepted 30 June 2025, Available online 16 July 2025.
Highlights
This is the first multicenter study, conducted in a low/middle-income country, to explore the unmet needs in earthquakes among people with cystic fibrosis.
Post-disaster conditions disrupted daily CF care, highlighting the need for resilient support structures to ensure continuous care for pwCF.
The study highlights the need for emergency plans to reduce health inequities and ensure access to healthcare after natural disasters.
Abstract
Background
We aimed to assess unmet needs of pwCF in the earthquake zone by income level.
Methods
Following the February 6, 2023 Earthquake in Turkiye, the shorter version of the 'Your Current Life Situation' (YCLS) survey was adapted for post-earthquake conditions. The adapted YCLS was administered through face-to-face interviews at participants in seven earthquake-affected provinces to determine the insecurity areas and unmet needs in pwCF. Parents completed the survey for those pwCF under 18 years old; those over 18 completed it themselves.
Results
Among 255 participants, 91.7% (n=234) had incomes below the poverty threshold and 71.8% (n=183) below the hunger threshold. Post-earthquake, 69% (n=176) lived in overcrowded conditions and 37.6% (n=96) relocated to temporary housing. Under these challenging circumstances, 34.5% (n=88) of pwCF experienced disruptions in routine visits, and 20.8% (n=53) reported disruption in daily CF care routine. Financial and food insecurities were prevalent, with 77.3% (n=197) and 53.3% (n=136) of participants affected, respectively. The potential impact of earthquake-induced relocation on the participants' insecurity status was analyzed. Among those who relocated, financial, transportation, and housing insecurity appeared to be more prevalent (p<0.001).
Conclusion
This is the first study to analyze association between income level and unmet needs among pwCF living in earthquake-affected zone. The study revealed significant financial and food insecurity among pwCF in these areas. The findings emphasize the need for disaster-specific emergency action plans to address these vulnerabilities, ensuring access to healthcare and basic needs during crises.
Keywords
Social determinant of health
Cystic fibrosis
Your current life situation
Earthquake
Income level
Socioeconomic status
1. Introduction
Clinical outcomes in cystic fibrosis (CF) vary significantly among individuals, shaped not only by genetic and healthcare-related factors but also by broader social determinants of health (SDH), which play a crucial role in disease management and outcomes [1].
World Health Organization (WHO) defines SDH "the circumstances into which individuals are born, grow, live, work, and age" and highlights "the broader forces and systems that shape daily living conditions, driven by the distribution of financial, political, and resource power at local, national, and global levels" [2,3]. Factors such as access to healthcare, financial stability, education, housing, and social support play a crucial role in shaping disease management, treatment compliance, and health outcomes in pwCF. In countries like Turkiye, where geographical and socioeconomic disparities significantly impact healthcare access, SDH play an even more pronounced role in shaping health outcomes for pwCF. Socioeconomic conditions are significantly worse in the eastern and southeastern regions of the country than in other regions [4,5]. Previous studies have demonstrated that geographic and socioeconomic inequalities were already significant public health issues in the eastern regions of the country [6]. Despite the presence of a national newborn screening program in Turkiye, residing in the Southeastern Anatolia region has been associated with a higher incidence of delayed CF diagnosis compared to other regions in the country [7]. These findings highlight the critical role of SDH in shaping health outcomes. Additionally, natural disasters, such as earthquakes, act as significant environmental stressors that exacerbate existing inequalities in SDH. Vulnerable populations like pwCF face heightened risks in post-disaster conditions due to the disruption of healthcare access and the challenges of maintaining complex treatment regimens.
Turkiye's geographical and geological structure makes it particularly prone to natural disasters, especially earthquakes. The February 2023 Earthquakes in Turkiye had profound social and psychological impacts [8]. The earthquake caused widespread damage over an area of about 350,000 km2 (140,000 square miles), affecting a total of about 9.1 million people in Turkiye [9,10].
Cystic fibrosis (CF) requires adherence to a complex and time-consuming treatment regimen, including regular medication, physical therapy, and nutritional programs [11]. In the aftermath of a devastating earthquake, maintaining this treatment regimen becomes even more challenging. Developing emergency response plans and delivering rapid and effective healthcare services post-disaster are crucial for maintaining the quality of life for pwCF and their families.
This study aims to identify specific areas of insecurity—such as transportation, housing, food access, financial stability, and access to health and clinical care—and unmet needs of pwCF living in earthquake-affected regions in Turkiye, with a focus on addressing the interplay between disaster-induced disruptions of care and SDH. By examining the impact of the February 2023 earthquakes on CF care and outcomes, this study seeks to provide insights into mitigating health disparities and improving the quality of life for pwCF.
2. Materials and methods
This cross-sectional descriptive study was conducted between September 1, 2023, and June 1, 2024, in seven provinces (in the Southeast Anatolia region of Turkiye) affected by the February 6, 2023 earthquake. PwCF and/or their parents attending routine outpatient clinic visits at these CF centers were asked if they would like to participate in the study. To those who accepted, we explained, in detail and privately, the aims of the study. We obtained written informed consent from all adult participants (≥18 years) and from the parent/s of those under 18 years of age.
The study was approved by the Ethics Committee of the Marmara University The School of Medicine (Protocol number: 09.2023.1075).
2.1. Study design and questionnaire selection
The shorter form of the Your Current Life Situation (YCLS) questionnaire was chosen to assess SDH among pwCF living in earthquake-affected areas [12]. The YCLS was developed by Kaiser Permanente’s (KP) Care Management Institute (CMI) and is primarily used to identify social needs for populations at risk of high healthcare utilization [12]. We used the YCLS questionnaire to assess the unmet needs of pwCF. The shorter form of the YCLS survey has nine questions.
Typically, to provide a comprehensive assessment, six additional questions from the YCLS item bank that examine various aspects of patients' living situations are included. Details on the YCLS form and its use can be found in the literature [13]. The earthquake-adapted YCSL form was translated using reverse translation. The translation was reviewed by a bilingual individual whose native languages are both Turkish and English.
To address challenges faced by pwCF in the earthquake-affected areas, five additional questions were included. All questions had binary (Yes/No) response options.
❑ Did you have to relocate due to the earthquake?
❑ In the past year, were there any instances when you were unable to access routine healthcare services (such as visits to your cystic fibrosis center)?
❑ In the past year, were there any instances when you could not access healthcare services due to a new health issue (e.g., lack of doctors or hospitals)?
❑ In the past year, was there any period when your cystic fibrosis care was interrupted?
If the response to the last question was “Yes,” participants were asked to indicate the reasons:
■
Difficulty accessing medications
■
Difficulty accessing devices
■
Difficulty following treatment protocols
The earthquake-adapted YCLS questionnaire was completed by caregivers for individuals under the age of 18, and by the individuals themselves for those aged 18 and over.
Participants’ income level were determined according to the hunger and poverty threshold data announced monthly by the Turkish Statistical Institute (TUIK). The monthly hunger threshold for a family of four for September 2023 was 459,2 US dollars, and the poverty threshold was 1588,6 US dollars [14].
2.2. Statistical analysis
Descriptive statistics included the mean and standard deviation (±SD) for continuous variables, the median and interquartile range (IQR) for non-normally distributed variables, and frequencies and percentages for categorical variables. The normality of the data distribution was assessed using the Kolmogorov-Smirnov (KS) test. For continuous variables that were not normally distributed, the Mann-Whitney U test was used as a non-parametric method to compare two independent groups. For normally distributed continuous variables, the independent samples t-test was employed to compare the means between two groups. For the analysis of qualitative data, Fisher’s Exact and Chi-square tests were applied. In all analyses, statistical significance was determined at a p-value of ≤ 0.05. Data were analyzed using SPSS 29 software.
3. Results
3.1. Demographic data
According to Turkiye National CF Registry System 2023 data, a total of 601 pwCF reside in these seven earthquake-affected provinces [15]. Two hundred fifty-five (42%) pwCF were included in the study.
Of the pwCF, 52.1% (n=133) were male, the mean (±SD) age was 8.2 (±5.2) years, and 94.5% (n=241) were under 18 years of age. A total of 84.7% (n=216) of the pwCF did not have the p.Phe508del variant in any allele, and only 12.9% (n=33) were using CFTR modulator therapy. A total of 91.7% (n=234) of participants had an income below the poverty threshold, and 71.8% (n=183) had an income below the hunger threshold. Only 3.9% (n=10) of patients had family income above the poverty threshold. 4.3% (n=11) of the participants did not provide their income status in the survey. Table 1 summarizes the demographic and clinical characteristics of the participants.
Table 1. Participant characteristics(N = 255).
Empty Cell | N ( %) |
Gender - Male | 133 (52.1%) |
Age | |
- Age (years); mean (±SD) - <18 years old | 8.2 (±5.2) 241 (94.5%) |
The individual completing the questionnaire - Father | 137 (53.7%) |
Household size - four or less - five and above | 79 (30.9%) 176 (69%) |
Family income threshold - Below hunger threshold - Below poverty threshold - Above poverty threshold | 183 (71.8%) 234 (91.7%) 10 (3.9%) |
Clinical characteristics of pwCF# | |
• Age at diagnosis (months); median (IQR) | 4 (2;8) |
• Newborn screening | 136 (53.3%) |
• FEV1pp %; mean (±SD) | 76.6 (±2) |
• BMI z-score; median (IQR) | −0.91 (−1.84; 0.22) |
• CFTR Variants | |
O Homozygous p.F508del | 14 (5.5%) |
O Heterozygous p.F508del | 15 (5.9%) |
O Other | 216 (84.7%) |
O Unknown | 10 (3.9%) |
3.2. Unmet needs
The majority of participants experienced financial insecurity (77.3%, n=197), food insecurity (53.3%, n=136), and housing insecurity (45.1%, n=115). The unmet needs for the five domains in the study is presented in Fig. 1. When analyzing unmet needs by income levels (Fig. 2), among participants experiencing food insecurity, 90.8% (n=118) were living below the hunger threshold. Similarly, 82.4% (n=154) of those reporting financial insecurity, 86.5% (n=77) of those with housing insecurity, and 81.4% (n=83) of those experiencing transportation insecurity were also living below the hunger threshold.
Among participants, no statistically significant differences were observed in FEV1pp or BMI z-scores across various domains of insecurity (financial, food, housing, transportation, and health and clinical care).
Table 2 summarizes the disruptions in medical care experienced by pwCF in the post earthquake period. A total of 34.5% (n=88) reported disruptions in routine visits, while 22% (n=56) faced difficulties in accessing hospital care during health issues. Additionally, 20.8% (n=53) experienced disruptions in their daily CF care routine which include disruptions in administering treatment in 14.9% (n=38), difficulties in accessing medications in 14.5% (n=37), challenges in obtaining medical devices in 11% (n=28). Of the participants, 96 (37.6%) pwCF were forced to relocate to temporary housing (container, tent, etc.) because of the earthquake. Only 10 participants (3.9%, n=10/255) had to move to another province due to the earthquake, 10 (3.9%) participants did not have access to clean water, and 23 (9%) had no private shower facilities and had to use communal showers. PwCF who had to relocate to temporary housing had more unmet needs than pwCF who did not have to relocate (Table 3). Significant differences were observed in financial, transportation and housing insecurities.
Table 2. The disruptions in medical care experienced by pwCF.
Unmet Needs in Medical Care | Number | Percent |
-The disruption in routine visits | 88 | 34.5% |
-The disruption in accessing hospital care during health issues | 56 | 22% |
-The disruption in daily CF care routine | 53 | 20.8% |
❑ The Disruption in Treatment Administration | 38 | 14.9% |
❑ The Disruption in Access to Medications | 37 | 14.5% |
❑ The Disruption in Access to Medical Devices | 28 | 11% |
Table 3. Presence of unmet needs according to relocation status among participants.
Relocation Status/Unmet Needs | Relocated pwCF | Non-Relocated pwCF | p-value |
Financial Insecurity | 83a (91.2%) | 114b (74%) | <0.001 |
Food Insecurity | 58 (61.1%) | 78 (49.4%) | 0.06 |
Transportation Insecurity | 51a (53.7%) | 57b (36.1%) | 0.009 |
Health and Clinical Care Insecurity | 48 (53.3%) | 67 (43.8%) | 0.18 |
Housing Insecurity | 93b (100%) | 22a (19.1%) | <0.001 |
Clarification: The table presents the distribution of various types of insecurity based on relocation status. Values are expressed as counts and percentages within each group. Certain insecurity-related questions were left unanswered by some participants, both among those who relocated and those who did not. *Superscripts (a and b) denote statistical significance for pairwise comparisons, where values with different superscripts differ significantly at the specified p-value threshold.
4. Discussion
This study demonstrated that poverty, a widespread issue in the region, is a major driver of unmet needs among pwCF, which are further exacerbated by natural disasters. Of the pwCF who were included in the study, almost 90% had incomes below the poverty threshold, while 70% had incomes below the hunger threshold. Following the earthquake, nearly 40% of the participants were forced to relocate to temporary housing. Insecurity in health and clinical care was identified in 45% of the participants. These findings indicate that natural disasters like earthquakes adversely impact the health and quality of care of pwCF.
Income, which indicates access to material resources, is a common measure of socioeconomic status (SES) [16]. According to the Turkish Statistical Institute (TUIK), income levels in the eastern and southeastern provinces are lower compared to other regions of the country [5]. In our study, most of the participants from the southeastern provinces reported that their income levels were below the poverty threshold. Our participants who were below the hunger threshold also reported significant food, financial, housing and transportation insecurities. These findings were consistent with the TUIK report, which highlighted economic challenges in the region.
Compared to the general population, families with CF already face a heightened financial burden due to the frequent need for healthcare, medications, or devices that are often costly and not fully covered by health insurance. Evans J. et al. reported that in the United Kingdom, 24% of adults with CF and 35% of parents of children with CF experienced financial insecurity, compared to 17% of the general UK population [17]. Similarly, Seyoum et al. highlighted that 64 % of pwCF in the United States faced financial hardship, with 55% reporting debt-related problems [18]. A previous study conducted in Istanbul, the city with the highest income level in Turkiye, revealed that financial insecurity was present in 37.9% of pwCF [13]. Current study was performed in a region economically disadvantaged and further affected by the recent earthquake and financial insecurity was present in almost 80% of the pwCF. Although the Turkish healthcare system covers most CF treatments except CFTR modulators, out-of-pocket expenses related to healthcare, food, and other necessities significantly increase their financial burden, as many pwCF already live below the poverty threshold. Economic disparities lead to inequalities among individuals, even in daily living conditions, creating significant barriers to accessing basic needs and healthcare [18]. Natural disasters could inevitably exacerbate existing inequalities, disproportionately impacting already vulnerable populations, such as pwCF. The high prevalence of financial insecurity identified in our study underscores the urgent need for targeted interventions, including income support and improved access to essential resources—such as food, transportation, and medical supplies—at affordable prices to address the compounded challenges faced by these communities.
Lower SES is associated with significantly poorer outcomes in CF care and may affect the health-related quality of life for pwCF across their lifespan [19]. After Britton first demonstrated the independent effect of SES on the age of death from CF [20], various studies have highlighted the broader impact of financial disparities on health outcomes. Taylor-Robinson et al. further supported these findings, showing that FEV1 was 4 % lower as income levels decreased, and the likelihood of chronic Pseudomonas aeruginosa infection almost doubled in lower-income groups [21]. Building on these earlier findings, Oates et al. reported that pwCF living in the most deprived areas had 2.3% lower FEV1, greater need for intravenous therapy, and 40% higher rates of exacerbations compared to those in the least deprived areas [22].
While our study did not show statistically significant clinical differences between pwCF with and without financial insecurity, such inequities may affect factors beyond standard clinical measures. They can hinder treatment management and limit access to care, highlighting the need for further research into the long‐term impacts of financial insecurity.
Food insecurity, defined as limited or uncertain access to nutritionally adequate foods, is associated with various environmental factors such as limited access to food markets, lack of transportation, and living in unsafe neighborhoods [23,24]. Ozlem Ipek et al. reported that food insecurity was present in 35 % of the general population, with moderate and severe food insecurity affecting 23.2% of households in Turkiye [25]. In a previous study conducted at our CF clinic in Istanbul, food insecurity was identified in 37.2% of the participants [13]. In the current study, 53.3 % of participants reported food insecurity. All of those reporting food insecurity had incomes below the poverty threshold, and 90.8% of them were living below the hunger threshold. Beyond the national context, food insecurity is also a significant global issue. In the United States, previous studies have shown that it affects 26% to 33% of families with children with CF and >40% of adults with CF [18,26,27]. Natural disasters such as earthquakes can additionally restrict access to food.The United Nations Food and Agriculture Organization (FAO) reported that the earthquake severely impacted 11 key agricultural Turkish provinces affecting >15 million people and >20% of the country’s food production [28]. These data highlight the need for additional support for pwCF in the face of natural disasters.
Housing instability encompasses various circumstances, including challenges with paying rent, overcrowded living conditions, reliance on relatives for accommodation, or allocating a substantial portion of household income to housing expenses [29]. In normal conditions, housing issues increase the likelihood of unmet prescription needs, delayed hospital visits, and missed routine care center visits, which are further exacerbated in the presence of a natural disaster [18]. Housing insecurity, which was reported by Seyoum et al. in 26% of the pwCF in the USA, was similarly observed in 23% of patients in our previous study conducted at our clinic, with a higher prevalence (33.9%) among pwCF living with a family income below the hunger threshold [13,18]. A total of 70% of all participants reported living with five or more individuals.Following the earthquake, almost 40% of participants were forced to relocate to temporary housing. Relocated individuals experienced higher levels of financial, transportation, and housing insecurity compared to those who were not relocated. These disadventages may inversely effect the health of the pwCF [9]. Additionally, crowded living conditions, moving frequently, staying with relatives and housing insecurity contribute to food insecurity, primarily through reductions in meal sizes, which is a major concern for families affected by CF, the condition associated with poor nutrition [30,31].
In a study conducted by Jennings et al. (2022), 51.6% of pwCF experienced insecurity in accessing healthcare and medication [19]. Current study revealed that health and clinical care insecurity was present in 45% in the earthquake-affected regions of Turkiye. There was a disruption in routine visits in 35% of the patients and access in hospital care during health issues and performing daily CF care were troubled in 20%. Rural populations are more likely to encounter barriers due to the distance from a CF center [16]. Transportation problems and relocation might have further contributed to this situation. Therefore, patients in the affected region require targeted interventions -such as improving transportation access- to address these compounded challenges. This study has several limitations. First, not all pwCF in the earthquake-affected area were included. Demographic data may not fully represent the entire pwCF population in the area. Additionally, income status was not assessed in relation to the pre-and post-earthquake periods. Furthermore, baseline data on the participants’ pre-existing insecurity domains, living conditions, and the interrelationships among these factors remain unknown. One potential limitation of this study is that it includes data from 6 to 9 months after the earthquake, which may be insufficient to identify issues immediately following the disaster.
This is the first study to report on the unmet needs of pwCF following natural disasters such as earthquakes. This study highlights the specific unmet needs faced by pwCF following an earthquake, emphasizing that financial hardships from daily living should not be a barrier to continuing necessary care for pwCF. Second, this multicenter study increases the generalizability of the findings across the earthquake-affected region. Including a broad geographic range provides an understanding of the diverse experiences and challenges faced by pwCF, particularly in areas with limited access to CF centers.
In conclusion, SDH are multifaceted and should also be evaluated in the context of natural disasters and chronic respiratory diseases. Future research should prioritize longitudinal studies to assess the long-term impacts of socioeconomic factors and natural disasters on the health outcomes of pwCF. Policymakers and healthcare providers must develop and maintain actionable plans well in advance of environmental disasters, with a focus on providing financial assistance, improving housing conditions, and ensuring access to essential healthcare services.
CRediT authorship contribution statement
Seyda Karabulut: Investigation, Methodology, Conceptualization, Formal analysis, Software, Writing – original draft, Investigation, Validation. Velat Sen: Software, Data curation, Investigation, Methodology, Conceptualization. Beste Özsezen: Software, Data curation, Investigation, Methodology, Conceptualization. Ali Özdemir: Software, Data curation, Investigation, Methodology, Conceptualization. Melih Hangül: Data curation, Investigation. Suat Savas: Software, Data curation, Investigation. Hadice Selimoğlu Sen: Software, Data curation, Investigation. Gaye Inal: Software, Data curation, Investigation. Huseyin Arslan: Software, Data curation, Investigation. Mahir Serbes: Software, Data curation, Investigation. Pelin Asfuroglu: Software, Data curation, Investigation. Ezgi Cay: Software, Data curation, Investigation. Erdem Topal: Software, Data curation, Investigation, Methodology, Conceptualization. Neval Metin Çakar: Investigation, Methodology. Almala Pınar Ergenekon: Methodology, Supervision. Ela Erdem Eralp: Methodology, Supervision. Sedat Oktem: Project administration, Methodology, Conceptualization. Zeynep Seda Uyan: Project administration, Methodology, Conceptualization. Fazilet Karakoc: Project administration, Methodology, Conceptualization, Writing – review & editing. Bulent Karadag: Project administration, Methodology, Conceptualization, Writing – review & editing. Yasemin Gokdemir: Project administration, Methodology, Conceptualization, Writing – review & editing.
Declaration of competing interest
The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.
Data availability statement
The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.
Funding
This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.
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