Laurie H Rubel, Cynthia Nicol, Anna Chronaki
A critical mathematics perspective on reading data visualizations: reimagining through reformatting, reframing, and renarrating
Educational studies in mathematics
rare diseases often complex chronic many lifeshortening germany healthcare rare diseases organized expert centers rare diseases patients additionally regional general practicioners specialists basic medical care thus collaboration information exchange sectors highly relevant study focuses patient caregiver perspective intersectoral interdisciplinary care local healthcare professionals hcps centers rare diseases germany aims 1 investigate patients caregivers general experience healthcare 2 analyse patients caregivers perception collaboration cooperation local healthcare professionals expert centers rare diseases 3 investigate patients caregivers satisfaction healthcare expert centers rare diseases total 299 individuals 176 patients 123 caregivers pediatric patients participated survey using questionnaire comprising several instruments constructs fifty participants additionally interviewed using semistructured guideline patients reported receive written information care contact person medical issues experienced interdisciplinary exchange within centers rare diseases patients caregivers sample mainly satisfied healthcare centers rare diseases qualitative interviews showed rather mixed picture including experiences uncoordinated care low engagement communication difficulties professionals different sectors patients reported several factors influenced organization quality healthcare eg engagement health literacy patients engagement hcps findings indicate high relevance transferring affected patients specialized care fast possible provide best medical treatment increase patient satisfaction intersectoral collaboration exceed written information exchange unburden patients feeling responsible communication sectors specialists results indicate lack inclusion psychosocial aspects routine care suggests opportunities necessary improvements