Rosacea boards fuel rosacea research

Written by on May 10, 2016 in depression & anxiety, research, symptoms with 0 Comments
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Here are 3 papers that have been written based on what rosacea sufferers have posted over time at the Rosacea Support Community forum site. None of the authors contacted me about their research, rather they sampled the forum postings themselves.

So this means that there are some rosacea researchers directly interested in how rosacea sufferers are seeking help online, and our postings may actually have some real value in informing future research into the disease. I think you’ll agree that their findings are pretty modest, but hey – someone is listening !

1. Psychological Disorders associated with Rosacea

This analysis of the rosacea support community f0und that feelings of depression were the most common reported aspect of rosacea followed by the distress associated with the manifestation of rosacea symptoms.

Psychological disorders associated with rosacea: Analysis of unscripted comments

Leah A. Cardwell, Michael E. Farhangian, Hossein Alinia,Sandy Kuo, Steve R. Feldman

Aim: To assess psychologically distressing aspects of rosacea reported in an informal medical setting
..
Results: Symptoms of depression (n = 44) and the desire to end life (n = 6) were mentioned, but no comments expounded on any suicide plan. Anxiousness (n = 7) and negative impact on confidence/self-esteem (n = 5) were mentioned. Symptoms, or clinical manifestations (n = 29), were the most frequently mentioned distress factor, followed by lifestyle change (n = 20). Patients also voiced difficulty with treatments (n = 15).

2. Methods

An online support forum for patients with rosacea was chosen for data collection (https://rosacea-support.org/community/). Data collection was completed in August 2013. At the time, the support site was composed of 14 forums which included 3685 topics, 27,051 posts and 3350 members.

Of the 27,051 posts, stratified random sampling (10%) and selective coding identified 1951 comments for analysis. The 1951 comments analyzed were coded for the following themes:

  • coping with rosacea,
  • prescription medications,
  • laser and low light therapy,
  • understanding rosacea,
  • stigma, and
  • seeking advice.

446 out of the 1951 comments focused on social perspectives such as coping with rosacea, understanding rosacea, stigma and seeking advice.

These 446 comments were analyzed for psychological effects of rosacea – including

  • symptoms of depression,
  • anxiety,

as well as low confidence/self-esteem – and aspects of rosacea which cause distress –

  • including symptoms,
  • lifestyle change and
  • difficulty with treatments

Related:

2. Rosacea Suffers Seek Alternative Treatments

This paper summarises rosacea sufferers attitudes to alternative rosacea treatments. Posters were foun to be seeking alternative therapies because of perceived medication failures, barriers experienced in getting treatment and distrust of doctors. No great discoveries were made, just a frequency of complementary products and practices and homeopathic products was noted.

Rosacea Patient Perspectives on Homeopathic and Over-the-counter Therapies

Hossein Alinia, MD, Lucy Lan, BA, Sandy Kuo, MD, Karen E. Huang, MS, Sarah L. Taylor, MD, MPH, and Steven R. Feldman, MD, PhD.

J Clin Aesthet Dermatol. 2015 Oct; 8(10): 30–34.

Background: Rosacea patients commonly employ nonprescription therapies. The authors’ aim was to understand rosacea patients’ perceptions of over-the-counter products, complementary and alternative medicine, and homeopathic therapies.

Method: A public, online discussion forum comprising 3,350 members and 27,051 posts provided a source of 346 posts on patient perceptions on alternative rosacea treatments.

Results: Three major themes of nonprescription treatment were identified—motivation for use, patient-provider discussions, and experience with these treatments. Perceived medication failure, barriers to treatment, and distrust of physicians drive patients to seek nonprescription therapies. Still, patients prefer to consult a physician on incorporating nonprescription therapies into treatment.

Complementary and alternative medicine natural products (19.4% of posts), complementary and alternative medicine practices (16.5%), and homeopathic medicine (3.8%) were commonly discussed.

Conclusion: Physicians have an opportunity to be a trusted source of information on the strengths and weaknesses of skin care products and other complementary treatments for rosacea.

Related

3. How Rosacea Suffers use Internet Boards

This article took a random sampling of posts and analysed what rosacea sufferers were seeking. Not unsurprisingly, Most commonly rosacea sufferers were looking for particulars on treatments, triggers, diet and skincare. The conclusion here was that doctors could be doing a better job to provide these sorts of answers in the first place.

Rosacea patients seeking advice: Qualitative analysis of patients’ posts on a rosacea support forum.

J Dermatolog Treat. 2016 Mar;27(2):99-102.

Alinia H, Moradi Tuchayi S, Farhangian ME, Huang KE, Taylor SL, Kuo S, Richardson I, Feldman SR.
BACKGROUND: Social media have become outlets for patients to voice opinions and ask questions. Since suffering from rosacea is an isolating experience and the disease is poorly understood, patients use social media to expand their knowledge about the condition.
OBJECTIVE: To understand rosacea patients’ online health information seeking habits to obtain a better insight of their educational needs.
METHODS: Ten percent of posts in online rosacea forum composed of 3350 members and 27 051 posts, discussing patient viewpoints and concern, selected by stratified random sampling. Three hundred and nine queries were directly categorized to patients “seeking advice” by two investigators and qualitatively analyzed.
RESULTS: Patients primarily sought advice about
  • treatments (n = 155, 50.1%),
  • triggers (n = 53, 17.1%),
  • diet (n = 48, 15.5%),
  • skin care (n = 37, 11.9%)
  • and special presentations of the disease (n = 22, 7.1%).

Questions frequently pertained to adverse effects, efficacy and target of therapy (78, 49, 30 posts, respectively).

CONCLUSION: Proactively providing reliable resources and comprehensive explanations on treatments, triggers, diet and skin care could be helpful in reducing patients’ confusion about rosacea and enhancing rosacea patient-physician relationships.

Related:

 

About the Author

About the Author: David Pascoe started the Rosacea Support Group in October 1998. .

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