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Table 2 Impact of COVID-19 on rare disease organisations and patients across the Asia Pacific region

From: A thematic study: impact of COVID-19 pandemic on rare disease organisations and patients across ten jurisdictions in the Asia Pacific region

  Overall: Asia Pacific HKSAR China Mainland China Australia, New Zealand Japan, Taiwan, Singapore India, Malaysia, Philippines
Impact on rare disease organisations’ operation
1. Daily operations 42%* 33%* 41%* 50%* 43%* 60%*
2. Reduced capacity or completely non-functional 63% 72% 48% 56% 86% 50%
3. Support patients’ physical & psychological wellbeing 55%* 47%* 59%* 63%* 43%* 40%*
4. Financial impacts (e.g. funding) 33%* 27%* 14%* 50%* 71%* 40%*
5. Support work made more difficult or much more difficult during the pandemic 63% 72% 47% 75% 71% 67%
6. Able to adapt and digitalise operations 58%* 0%* 63%* 100%* 50%* 0%*
7. Able to supply protective gear 21%* 50%* 13%* 0%* 50%* 0%*
Impact on rare disease patients
1. Faced challenges accessing medical care or treatment / avoided seeking care for complications related to their rare condition 86%* 100%* 83%* 81%* 57%* 80%*
2a. Difficulty accessing medical care: scheduled appointments postponed or cancelled 68%* 67%* 79%* 63%* 57%* 60%*
2b. Had their rehabilitation therapies cancelled or postponed 12%* 20%* 8%* 6%* 0%* 20%*
3. Feeling concerned about their rare health condition because of COVID-19 20%* 13%* 17%* 31%* 14%* 40%*
4. Difficulty accessing medicines 58% 56% 73% 56% 14% 50%
5. Trouble procuring personal protective equipment 55% 78% 50% 56% 71% 17%
6. General impacts
[% of patients impacted in some degree; % of patients that were very or extremely impacted]
95%; 57% 89%; 50% 93%; 45% 100%; 69% 100%; 43% 100%; 83%
7. Negative impact on physical health or wellbeing 36%* 40%* 33%* 38%* 29%* 40%*
8. Negative impact on mental health or well-being 29%* 27%* 13%* 63%* 0%* 60%*
9. Negative impact on social health or well-being 57%* 80%* 38%* 56%* 57%* 80%*
10. Negative financial impact (i.e. loss of income or job) 14%* 0%* 17%* 25%* 29%* 0%*
  1. *Based on top 3 areas provided as qualitative responses
  2. COVID-19 Coronavirus Disease of 2019, HKSAR Hong Kong Special Administrative Region