This is a really important study. Glad I found it.

Sense of coherence or self-efficacy as predictors of health-related quality of life in sickle cell disease patients https://discovery.researcher.life/article/sense-of-coherence-or-self-efficacy-as-predictors-of-health-related-quality-of-life-in-sickle-cell-disease-patients/77b16280c2103ca3b537a4caef258f4f

This study can lead to deeper mental health analyses of #SickleCell patients that can promote more efficacious treatment. It is difficult to have a sense of control of one's life and capacity to advocate and work for oneself when one is in constant pain, and often tethered geographically by their ability to get to the hospital in case of emergency. Plus, many would want to keep going to their preferred providers, so that results in a lot of staying near home.

#health #science #medicine #BlackHealth #MentalHealth #SelfEfficacy #QualityOfLife #HRQoL #SickleCellAnemia #hematology #BloodDisorders #Blood

#BlackMastodon
@blackmastodon@a.gup.pe
@BlackMastodon@chirp.social

Improving Interpretation of Evidence Relating to Quality of Life in Health Technology Assessments of Rare Disease Treatments | SpringerLink https://link.springer.com/article/10.1007/s40271-022-00598-4
#HRQoL #PROMs

#HTA of #RareDiseases must: consider what matters most to the patient population; use different forms of evidence to understand QoL impacts; provide methodological guidance to capture QoL impacts on patients/carers.