Authors' reply regarding "On diagnosing and treating PANS/ PANDAS: questions from a patient support group"

2021 ◽  
Author(s):  
HCV Pfeiffer ◽  
C De Visscher ◽  
H Gjone ◽  
S Ygberg ◽  
LB Herner ◽  
...  
Keyword(s):  
Support Group ◽  
Patient Support ◽  
Patient Support Group

scholarly journals Using pre-existing social networks to determine the burden of disease and real-life needs in rare diseases: the example of Thygeson's superficial punctate keratitis

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Rana Saad ◽  
Sami Saad ◽  
Oscar Haigh ◽  
Domitille Molinari ◽  
Marc Labetoulle ◽  
...  
Keyword(s):  
Social Networks ◽  
Chronic Disease ◽  
Support Group ◽  
Burden Of Disease ◽  
Ocular Surface ◽  
Eye Drops ◽  
Patient Support ◽  
Patient Support Group ◽  
Thygeson's Superficial Punctate Keratitis ◽  
Punctate Keratitis

Abstract Background Thygeson’s superficial punctate keratitis (TSPK) is a rare and still poorly understood disease of the ocular surface, responsible for recurrent episodes of photophobia and eye pain. While TSPK is considered as a benign condition, a subset of patients has frequent recurrences or even chronic disease, two situations in which there are currently no therapeutic guidelines. We used a preexisting Facebook TSPK patient support group to assess the clinical journey and the burden of disease of TSPK. Results An online survey was sent to the patient support group. The first part of the questionnaire gathered information on demographics and the patient’s clinical journey [diagnostic modalities, symptoms, duration and frequency of recurrent episodes (RE), efficacy and tolerance to treatments]. The second part focused on quality of life (QoL) using the Ocular Surface Disease-QoL (OSD-QoL) questionnaire. Seventy-two patients out of 595 members of the support group completed the questionnaire during the 3-months study period. Eighty percent of patients developed symptoms before 30 years old, and 47% reported a delay in the diagnosis above 1 year. Sixty percent of patients reported over 5 RE yearly, and 18% of RE lasted more than 3 months. Forty percent of all patients used cyclosporine eyedrops (50% of those with > 5 episodes/year) and it was perceived as effective by 72% of these patients. The impact on daily life activities was judged as severe by 22% of patients, while 38% reported reduced professional activity and 80% were deeply saddened by their eye condition. Conclusion TSPK patients may present with frequent recurrences and/or chronic disease, that result in a severe impact on QoL, and an off-label use of topical immunomodulatory eye drops, suggesting the urgent need for controlled studies. The utility of using social networks for rare ophthalmic disease research includes, faster data collection, data from patients across the globe, and also raises relevant questions about their real needs.

THE RENAL PATIENT SUPPORT GROUP: SUPPORTING PATIENTS WITH CHRONIC KIDNEY DISEASE THROUGH SOCIAL MEDIA

2014 ◽  
Vol 40 (3) ◽  
pp. 216-218 ◽  
Author(s):  
Shahid Muhammad ◽  
Michelle Allan ◽  
Filson Ali ◽  
Magda Bonacina ◽  
Meshia Adams
Keyword(s):  
Chronic Kidney Disease ◽  
Social Media ◽  
Kidney Disease ◽  
Support Group ◽  
Patient Support ◽  
Patient Support Group ◽  
Renal Patient

scholarly journals Stronger Than Cancer: A Campaign of Thai Cancer Society

2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 248s-248s
Author(s):  
C. Parnmetpichayah ◽  
S. Narkpongpun ◽  
S. Soradatta ◽  
S. Kudtiyakarn ◽  
R. Yingchankul ◽  
...  
Keyword(s):  
Cancer Patient ◽  
Support Group ◽  
Good Luck ◽  
Patient Support ◽  
Cancer Society ◽  
Patient Support Group ◽  
Thai People ◽  
Cancer Intervention ◽  
The Cost ◽  
Heart Foundation

Amount raised: Bht 3 million (∼USD 90,000) Background and context: Thai Cancer Society (TCS), a new cancer patient support group (PSG) in Thailand, was established in 2016, under the auspices of Heart to Heart Foundation. TCS aims to raise awareness of cancer, promote access to universal cancer care, and coordinated existing cancer-specific PSGs. To promote the Thai Cancer Society, a campaign “Stronger than Cancer: 1,000,000 km for Cancer Patients” was launched in 1 October 2017 and ended on World Cancer Day (WCD), 4 February 2018. Aim: To engage general public to exercise and raise awareness of cancer prevention, TCS, and WCD. Strategy/Tactics: People like to share and this is the era of online content. Thai people likes to donate money as for merit-making and good luck. This campaign created a conditional donation scheme whereby people can only donate if they run or walk. Program process: The campaign created a Facebook page and provide piggy bank to multiple business groups and engage participant to donate, on condition that they have run or walk first then they can donate 1 baht (USD 0.03) per km. They may use Endomondo application to track their running distance, share it on Facebook page, and automatically accumulated at aim to collect 1,000,000 km by WCD. An running event was conducted on WCD to collect piggy bank and donation were concluded. Costs and returns: Around 4400 people signed up for the campaign, >30,000 piggy bank was distributed, and 2185 used Endomondo app and some used other methods to collect their record. The app recorded 1,090,000 km by WCD deadline. Over 3,000,000 Baht was raised within 4 month, and donation continued after the WCD since many people continue to exercise and collect money. The cost of whole program was 1,500,000 Bht, inclusive of the running event. What was learned: This campaign has successfully engage many people to start exercise, using donation as motivation. New mindset on cancer intervention has been cultivated that we can overcome the cancer in 1 way or another.

scholarly journals On diagnosing and treating PANS/PANDAS: Questions from a patient support group

2021 ◽  
Author(s):  
Katrin Pettersson ◽  
Geir Rune Karlinger ◽  
Caroline Dawn Sutton
Keyword(s):  
Support Group ◽  
Patient Support ◽  
Patient Support Group
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