Preliminary development of proxy-rated quality-of-life scales for children and adults with Niemann-Pick type C
Author:
Funder
Actelion Pharmaceuticals
Publisher
Springer Science and Business Media LLC
Subject
Public Health, Environmental and Occupational Health
Link
http://link.springer.com/content/pdf/10.1007/s11136-019-02234-5.pdf
Reference30 articles.
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2. Patterson, M. C., Mengel, E., Wijburg, F. A., Muller, A., Schwierin, B., Drevon, H., et al. (2013). Disease and patient characteristics in NP-C patients: Findings from an international disease registry. Orphanet Journal of Rare Disease, 8, 73.
3. Joachim, G., & Acorn, S. (2003). Life with a rare chronic disease: The scleroderma experience. Journal of Advanced Nursing, 42, 598–606.
4. Bury, M. (1982). Chronic illness as biographical disruption. Sociology of Health & Illness, 4, 167–182.
5. Reeve, J., Lloyd-Williams, M., Payne, S., & Dowrick, C. (2010). Revisiting biographical disruption: Exploring individual embodied illness experience in people with terminal cancer. Health, 14, 178–195.
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