Chronic diseases know no age boundaries. Cystic Fibrosis (CF) stands as a compelling illustration of this truth, as it is a life-shortening genetic disease that significantly impacts the respiratory, digestive, and reproductive systems without regard for age. Despite the complexities that CF presents, remarkable progress has been achieved in enhancing both the quality of life and life expectancy for those living with CF.
While CF remains without a cure, groundbreaking treatments and therapies have emerged, aimed at improving symptom management and overall quality of life. These advancements have also driven a demographic shift in CF. In 2001, 47% of CF cases involved adults, but this number has surged to 65% by 2021. The estimated median survival age for individuals with CF in Canada is an impressive 57.3 years, a testament to the strides made in managing this complex condition (Cystic Fibrosis Canada, 2023). This extended life expectancy, while a positive development, brings a unique challenge - the transition from pediatric to adult healthcare providers.
Canada boasts a network of multidisciplinary Cystic Fibrosis Care Clinics that provide a comprehensive approach to managing the condition. These centers offer medical care, physiotherapy, nutritional support, and psychosocial services – a vital support system for individuals living with CF.
Many CF Clinics in Canada have embraced the practice of sharing healthcare staff between pediatric and adult clinics, particularly in smaller facilities. This approach offers a sense of security for young CF patients and their parents as familiar allied staff continue to be part of their care team. This transition process is designed to be less stressful for patients and their families (Gravelle, A., Davidson, G., Chilvers, M., 2012).
However, like any transition, challenges arise. Pediatric staff may find it difficult to "let go" of their patients, inadvertently hindering the development of independence in young adults with CF. The success of this transition hinges on the adult healthcare system's ability to accommodate the patient's needs, provided the patient is willing and prepared for the shift. For those who find the transition less than smooth, participants have suggested a need for more structured transition preparation interventions. This could include actively involving adolescents and young adults in transition decisions and initiating transition preparations early during adolescence (South, K., George, M., Sadeghi, H., et al., 2022).
While living with CF brings daily challenges and requires significant time and effort for treatments, the continuous progress in healthcare and research extends life expectancy into adulthood, providing hope to those affected by CF. Cystic Fibrosis is indeed a complex chronic disease, but with ongoing research, advocacy, and the unwavering support of families and communities, a brighter and longer future is on the horizon for those living with this chronic disease.
References
Cystic Fibrosis Canada. (2023, February). 2021 Annual Data Report. The Canadian Cystic Fibrosis Registry. https://www.cysticfibrosis.ca/uploads/2021-Annual-Data-Report-WEB-AODA.pdf
Gravelle, A., Davidson, G., Chilvers M. (2012). Cystic fibrosis adolescent transition care in Canada: A snapshot of current practice. Paediatrics Child Health, Vol. 17(10), 553-556. https://doi.org/10.1093%2Fpch%2F17.10.553
Singh, J., Towns, S., Jayasuriya, G. (2022). Transition to adult care in cystic fibrosis: The challenge and the structure. Paediatric Respiratory Reviews, Vol. 41, 23-29. https://0-doi-org.aupac.lib.athabascau.ca/10.1016/j.prrv.2020.07.009
South, K., George, M., Sadeghi, H., et al. (2022). Moving up: Healthcare transition experiences of adolescents and young adults with cystic fibrosis. Journal of Pediatric Nursing, Vol. 65, 116-123. https://0-doi-org.aupac.lib.athabascau.ca/10.1016/j.pedn.2022.03.007
Коментарі