Cost burden among the CF population in the United States: A focus on debt, food insecurity, housing and health services

Seyoum, Semret; Regenstein, Marsha; Benoit, Marie; Dieni, Olivia; Willis, Anne; Reno, Kim; Clemm, Cristen

doi:10.1016/j.jcf.2023.01.002

Cited by 12 publications

(4 citation statements)

References 18 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Food insecurity (FI), which is the lack of access to nutritionally adequate and safe food, is a significant social determinant of health, that is more common in people with CF, with 33% impacted in 2019 79,80 . FI is linked to weight loss, poor airway clearance, and poor medication adherence 81 .…”

Section: Potential Obstacles To Growth For Infants With Cfmentioning

confidence: 99%

“…FI is linked to weight loss, poor airway clearance, and poor medication adherence 81 . Families with CF face challenges in meeting the recommended nutritional intake and associated expenses as one in five families are unable to afford balanced meals 80 . Other competing costs such as basic living expenses, healthcare costs, transportation, contribute to FI.…”

Section: Potential Obstacles To Growth For Infants With Cfmentioning

confidence: 99%

See 1 more Smart Citation

Improving growth in infants with CF

Gabel,

Gaudio,

Shaikhkhalil

2024

Pediatric Pulmonology

View full text Add to dashboard Cite

Cystic fibrosis (CF) results in chronic pulmonary infections, inflammation, pancreatic insufficiency, and multiple gastrointestinal manifestations. Malnutrition and poor growth are hallmarks of CF, and strongly associated with poor outcomes. Through newborn screening, many infants can be diagnosed within a few days of life, which allows for early initiation of nutritional counseling and close clinical follow‐up. Obstacles to growth for infants with CF start in utero, as newborns with CF can have a lower birth weight than the general population. Improving infant growth has been linked to improved clinical outcomes and survival. It remains a top priority and challenge for caregivers and healthcare teams. An interdisciplinary approach, including registered dietitian and social work support, is essential to optimize health for infants with CF. Remaining barriers to normalcy include deficits in linear growth, lack of accurate nutrition biomarkers, persistence of inequities related to social determinant of health, particularly in the global CF community.

show abstract

Section: Potential Obstacles To Growth For Infants With Cfmentioning

confidence: 99%

Section: Potential Obstacles To Growth For Infants With Cfmentioning

confidence: 99%

Improving growth in infants with CF

Gabel,

Gaudio,

Shaikhkhalil

2024

Pediatric Pulmonology

View full text Add to dashboard Cite

show abstract

“…When analysing health-related quality of life, 4 dimensions of the patient's functioning are taken into account: physical condition, emotional state, social functioning and socio-economic conditions, and bodily sensations [12]. Considering the socio-economic aspect, the patient and his family are burdened with significant costs of treatment and rehabilitation [8,13,14]. According to the data, the monthly cost of treatment and rehabilitation of a cystic fibrosis patient is up to PLN 4000 [15].…”

Section: Introductionmentioning

confidence: 99%

Life quality of adult patients with cystic fibrosis

Siczek,

Kobos

2023

ppiel

View full text Add to dashboard Cite

Introduction: Cystic fibrosis is a genetic, multi-system chronic disease. The disease is caused by mutations in the CFTR gene. The incidence of the disease in Poland is estimated at 1 per 4400 births. In Poland in 2019, 1231 patients suffering from cystic fibrosis were registered.Objective of the study: Analysis of patients' quality of life suffering from cystic fibrosis. Material and methods: This cross-sectional study was conducted in a pulmonary ward between August and December 2022. The study group consisted of 52 adult patients suffering from cystic fibrosis. The mean age of the patients was 29.25 years (SD = 8.43). Twenty-three respondents received causal treatment. To collect the research material, a standardized Cystic Fibrosis Quality of Life (CFQoL) questionnaire was used, which covered number of domains: physical activity, social activity, treatment-related causes, respiratory system symptoms, emotional wellbeing, concerns for the future, interpersonal relations, body image, concerns about work/study, and personal data from a questionnaire filled in by the subject. Results: The study showed that, in total, patients obtained an average of 51.24 points in the CFQoL questionnaire (SD = 20.18). Low quality of life was demonstrated in 23 patients. In the assessment of the quality of life, patients rated physical functioning the highest, and fears about the future and fears about work/study the lowest. There was no significant relationship between gender (p = 0.449), age (p = 0.362), education (p = 0.905), marital status (p = 0.084), professional status (p = 0.096), and the area of residence of the respondents (p = 0.122) and their overall quality of life. A significant relationship was found between the overall quality of life and the use of oxygen and causative drugs in patients' treatment. Conclusions: Nearly half of patients with cystic fibrosis assess their quality of life as low. Patients who take causative drugs have a better quality of life. More frequent hospitalizations reduce the quality of life of patients.

show abstract

“…People with CF already have high out-of-pocket expenses annually (median $8244), which is about a quarter of the median per capita income in the United States. 8 There is no guaranteed coverage if people cannot afford this astronomical outof-pocket cost. Changing the copay assistance program is akin to denying access to CFTR modulators and will lead to the deterioration of health in people with CF.…”

mentioning

confidence: 99%