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Commit 0b86c672 authored by Liliana Sanfilippo's avatar Liliana Sanfilippo
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src/contents/Human Practices/Feedback.tsx
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......@@ -9,18 +9,28 @@ export function HPFeedback(){
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<H4 text="Our surveys on cystic fibrosis and gene therapy"></H4>
<p> We are proud of our surveys on gene therapy and cystic fibrosis (CF), which explore knowledge about the disease and willingness to embrace gene therapy as a potential treatment. Since we wanted to differentiate between the general public and affected CF patients, we created two different surveys.</p>
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<p>The majority of respondents (62.70%) indicated that they or their relative require medical treatment or therapy daily. Weekly treatment was necessary for 14.59%, while 9.73% needed therapy several times per week. Only 6.49% reported needing treatment either monthly or rarely. The high frequency of daily treatments highlights the heavy burden of managing cystic fibrosis and reinforces the potential appeal of gene therapy, which could reduce the need for constant medical intervention. </p>
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<p>The majority of respondents (62.70%) indicated that they or their relative require medical treatment or therapy daily. Weekly treatment was necessary for 14.59%, while 9.73% needed therapy several times per week. Only 6.49% reported needing treatment either monthly or rarely. The high frequency of daily treatments highlights the heavy burden of managing cystic fibrosis and reinforces the potential appeal of gene therapy, which could reduce the need for constant medical intervention. </p>
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<p>A significant majority, 78.72%, indicated that they would be open to gene therapy if it significantly improved symptoms, while only 1.42% said no. This overwhelming support aligns with the hope patients have for less invasive and more effective treatments. This also reflects the possibility of gene therapy becoming a central treatment method, especially given the heavy therapeutic load CF patients already carry.</p>
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<p>A vast majority, 93.48%, expressed interest in more information about gene therapy. This mirrors the general public’s desire for further education and suggests that while there is strong support for gene therapy, people still feel they lack sufficient knowledge to make fully informed decisions. Patients especially emphasized the importance of safety and long-term efficacy, areas that should be focal points in future communications. </p>
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<Collapsible id="collapsible1" open={false} title="See the full results of our surveys">
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<p>The majority of respondents (44.17%) learned about CF through media channels, such as television, news, or the internet. Other significant sources of information include family and friends (25.15%), as well as educational institutions (20.86%). Interestingly, only 3.68% of respondents learned about CF from healthcare providers, suggesting that the disease is more commonly understood through external sources rather than direct medical education. This reliance on media and personal connections highlights the importance of accurate and accessible information in the public domain, especially when considering the introduction of gene therapy as a treatment option. </p>
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<p>This chart shows that 23.19% of respondents identified abdominal pain as the most frequent symptom, followed by chronic cough (18.95%) and frequent lung infections (13.72%). Interestingly, symptoms like muscle weakness (2%) and delayed growth (6.23%) were less commonly reported. The emphasis on chronic respiratory and gastrointestinal symptoms aligns with CF being a metabolic disease affecting the whole body like experts such as Dr. Olariu explained to us, reinforcing the need for comprehensive treatments like gene therapy that target multiple aspects of the disease at the cellular level.</p>
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<p>The survey reveals that 36.79% of respondents identified emotional stress as the most stressful aspect of cystic fibrosis, closely followed by physical symptoms at 32.78%. Social restrictions were noted by 17.73% of respondents, and financial burden was a concern for 11.37%. Only 1.34% cited other factors. These results show that emotional and physical challenges dominate the stressors for patients and families, highlighting the need for treatments like gene therapy that could reduce both the physical and emotional burdens of managing CF. </p>
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<p>When asked about gene therapy, 67.58% of respondents indicated familiarity with the concept, while 32.42% had not heard of it. This demonstrates a moderate level of awareness, but it is clear that a third of the population remains unaware of gene therapy. This gap in knowledge represents a significant opportunity for educational efforts, as the lack of familiarity could impact the acceptance and support for gene therapy as a viable treatment option for CF. The comments suggest that many see gene therapy as an emerging field, but there is some confusion regarding its practical applications.</p>
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<p>Respondents were asked what actions could be taken to improve CF awareness (see diagram 4). The most popular option, chosen by 22.87%, was publicity campaigns on TV, radio, and other mass media outlets. Information events at schools and universities followed at 13.20%, along with documentary films and short movies about life with CF (14.01%). These findings suggest that the public sees media as the most effective way to spread awareness, a strategy that could also be employed to educate about gene therapy. The public appears to favor visual and accessible formats, which could be used to highlight the benefits of new treatments like gene therapy. </p>
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<p>The most common concern, shared by 28.77% of respondents, was related to the safety and side effects of gene therapy, followed by long-term effects (27.85%) and costs or accessibility (24.20%) (see diagram 9). Ethical questions were raised by 14.61% of participants, while only 4.57% had no concerns at all. These concerns echo comments made in other parts of the survey, where respondents expressed interest in learning more about the safety protocols and regulatory measures surrounding gene therapy. Clearly, addressing these concerns in future public engagements will be critical to fostering wider acceptance. </p>
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