• 100 patients with Sjogren’s syndrome give their advice about how to better handle their disease

    Sjogren’s syndrome is a disease with a diverse range of symptoms such as dry mouth, dry eye, lethargy, and joint pain which greatly impact quality of life. However, patients’ experience of their disease symptoms and how they manage their diseases is not well known. QLife conducted a survey in a Japanese Hospital with 100 patients at a Rheumatology Clinic to discover their “real opinion” about their disease. In addition, Clinic Director, Professor Akira Sagawa gave his insight about the questionnaire results.

    Sagawa Akira Rheumatic Clinic Director
    1969:Graduated from Hokkaido University School of Medicine
    1993:Manager of Yamanoue Hospital Center for Rheumatism and Collagen Disease
    1995:Director of Hospital
    2006:Opened Sagawa Akira Rheumatic Clinic in Sapporo City Chuo Ward

    1. 1. Patients report dry eye (99%) and dry mouth (98%). Over 80% report the disease “influences daily life”
    2. 2. After symptoms first appear, diagnosis as Sjogren’s syndrome takes on average three years , but the longest was 44 years
    3. 3. Diagnosis of Sjogren’s syndrome, 40% of patients to confront with the disease
    4. 4. Advice from patients: Do not strain yourself, avoid stress
    5. 5. To alleviate the pain of Sjogren’s syndrome
    6. 6. Contact us
    Patients report dry eye (99%) and dry mouth (98%). Over 80% report the disease “influences daily life”

    When patients were asked about their current symptoms and their impact on daily life, almost all complained of “dry eye” (99%) and “dry mouth” (98%) symptoms, as well as “feeling fatigued” (84%), and “joint pain” (82%). Regarding the degree of influence of each symptom, 84.7% of patients experiencing dry mouth and 83.8% of patients experiencing dry eye answered that their symptoms were “very influential on their quality of life” or “slightly affected their quality of life”.Furthermore, dry eye (33%) and dry mouth (29%) were the symptoms that many patients want treated.

    Dr. Sagawa’s Commentary

    Sjogren’s syndrome is characterized by a range of unpleasant symptoms, especially dry eye and dry mouth which many patients report affect their daily life. There are eye drops that improve dry eye and drinks that encourage the secretion of saliva, so patients are encouraged to consult their doctor to find the best solution for their complaints.

    In the survey, patients were asked to describe their episodes of dry mouth and dry eye symptoms. Here is what they had to say:

    Dry Mouth

    • I cannot eat rice crackers and cookies without water.
    • My tongue was rough and tingling, so it was difficult to eat.
    • Because it tends to cause tooth decay and periodontal disease, I have increased how much I brush my teeth.
    • When my thirst is terrible, the inside of my cheek sticks to my teeth.
    • Dry mouth causes trouble talking which influences socializing.
    • Keeping myself hydrated brings me to the toilet a lot.
    • When asleep, my tongue stuck to my upper mouth and I could not breathe.

    Dry eye

    • My eyes always hurt and the sun is always bright, so I do not like to go out on sunny days.
    • I was using contact lenses, but since my eyes are bad, contact lenses stick to my eyes and are hard to remove, so I stopped using them.
    • My eyes always hurt and I constantly have bloodshot eyes. So now I often narrow my eyes.
    • I need to carry eye drops because eyes are always dry. When I do not carry them, I need to yawn to release tears.
    After symptoms first appear, diagnosis as Sjogren’s syndrome takes on average three years , but the longest was 44 years

    The survey showed that from the onset of symptoms, it takes three years on average (44 years as the longest) to be diagnosed with Sjogren’s syndrome. On average respondents reported 1.8 years from the symptoms’ first appearance until they sought their first medical consultation. The average period from the first medical consultation to the diagnosis of Sjogren’s syndrome was 1.2 years.

    Dr. Sagawa’s Commentary

    Even if people are aware of the drying of their eyes and mouth, some people endure their symptoms due to their old age and do not see their doctor. Dryness of the eyes and mouth are pathological symptoms with various possible causes, so it is necessary to investigate what is causing a patient to experience them. If these symptoms occur, see your doctor as soon as possible. If you think it may be Sjogren’s syndrome, it is better to consult with a collagen disease and rheumatology specialist.

    Diagnosis of Sjogren’s syndrome, 40% of patients to confront with the disease

    When asked if there was a change in their feelings about facing their disease after being diagnosed with Sjogren’s syndrome, 9% answered “I was much more positive” and 31% “I became somewhat positive”. Below are comments from the patients who became positive after their diagnosis.

    • Once the cause was identified and the medicine worked, I did not need to lie down for long time even when I work or go out.
    • I have been called a liar and treated as lazy, depressed, and a malingerer for many years, but I was relieved that I was right.
    • Because the symptoms are relatively light and it is possible to deal with them on my own, I thought that I could work or endure it.
    • I was anxious because the cause was uncertain, but from the day I knew the cause, I could face it.
    Advice from patients: Do not strain yourself, avoid stress
    • It is necessary for families to understand your disease, so tell them about it and ask for their help when something happens.
    • It is important to meet a doctor who you can consult about anything regardless of the size of the hospital because you will need long-term treatment.
    • The pain and difficult time you are having is hard to share to get understanding from other people. Relax and avoid stress by making yourself free.
    • First of all, it is most important that your family understand that it is a disease. You will feel comfortable when your family communicate with you normally after gaining their understanding. If you can become a selfish character then you will be more comfortable.
    • Become slightly sensitive to your body and when you feel tired, do not suffer from it, please take care of yourself. It is important not to strain yourself and to rely as much as you can on your family and friends.
    • Think about steps with a bright mind without worrying or sadness. It is nobody’s fault, so do not think “Why me …” That way you will not become depressed. Always convey your gratitude to your family and medical personnel. It is the secrets to good relationships.
    To alleviate the pain of Sjogren’s syndrome

    “Sjogren’s syndrome is often accompanied by painful symptoms such as dry eyes, dry mouth, feelings of fatigue, and joint pain, but by visiting medical institutions it is possible to relieve your symptoms and improve your quality of life. Also, in order to live well with this disease, it is important to talk to your family and the people surrounding you (not only to a doctor). Please do not try to solve this problem alone, please talk with your doctor, family, and other patients.”(Dr. Sagawa)

    Contact us

    Please feel free to inquire using the form below. We will respond as soon as possible between 9:30 and 18:30 (Monday – Friday Japan Tokyo time).

    2017/04/26 published.
    Article titled “100 patients with Sjogren’s syndrome give their advice about how to better handle their disease”
    Retrieved from https://www.qlife.jp/square/feature/sjogrens_syndrome/story62099.html

  • Matching Platform for Patients and Investigative Sites

    In order to solve the challenges of recruiting patients in clinical trials, Buzzreach offers services to people who are suffering from health problems by providing clinical trial information to the public and improving clinical trials’ searchability on the internet.

    We have created online matching platforms called Search My Trial(smt) and Post Your Buzz (puzz), which allow patients to interact with investigative sites and SMOs and makes clinical trials more familiar and accessible to the general public.

    1. 1. Accelerate Patient Recruitment at Investigative Sites
    2. 2. Smt, the Expedia for Clinical Trials
    3. 3. Collective Management of Clinical Trial Information with Puzz
    4. 4. An Overview of How the System We Provide Works
    5. 5. Contact us

    Accelerate Patient Recruitment at Investigative Sites

    Clinical trials are a necessary step for delivering new and more advanced medicines to patients. However, at present, there is no resource available for patients to guide them towards clinical trials that they may benefit from. In order to change this, we created an online matching platform to connect potential patients with investigative sites and help them understand that participating in a clinical trial is a potential option.

    In Japan, there are approximately 600 clinical trials a year covering a total of 50,000 participating patients. These clinical trials are conducted at over 20,000 sites however, 70% of the trials fail to meet the deadline due to lack of participants. One of the main reason is the lack of trial information available to the public. If investigative sites emphasize more on the promotion of trials, the information will be more open to the public, raising the participation rate. This, in turn, would lead to cost reduction for pharmaceutical companies due to the decrease of drug development time as well as newer drugs reaching patients quicker and cheaper.

    Furthermore, as the movement grows, the value and awareness of existing patient specialized recruitment companies (PRO) will rise. We believe that our platform will help raise awareness about companies and organizations involved in clinical trials and eliminate past stigmas surrounding clinical trials.

    Our platform provides the following 4 services:

    • Patients are able to search for relevant clinical trial information about trials they are potentially eligible to participate in.
    • Investigative sites are able to promote their specific clinical trials’ information.
    • Sponsors and CROs are able to collectively manage the status of each of their clinical trials.
    • Potential clinical trial patients and investigative sites will be able to be matched with one and other.

    Smt, the Expedia for Clinical Trials

    These days, people book flights and hotels using booking engines like Expedia. These provide the best, most relevant flight and hotel information to suit the person’s specific travel needs: such as location, schedule and budget. Using a similar model, smt works as a matching platform to link patients who are interested in participating in clinical trials with the most relevant sites conducting clinical trials based on a patient’s needs such as diagnosis, symptoms and geographical location.

    Information is automatically collected from JAPIC, JMACCT, Clinical Trial Registration System, ClinicalTrials.gov, and UMIN, as well as posts from investigative sites so that we can offer clinical trial information to patients and people suffering from health problems. By providing as much information as possible, we aim to support potential patients to better understand clinical trials and encourage them to participate in clinical trials.

    Figure 1: Smt and the Services it Provides

    Collective Management of Clinical Trial Information with Puzz

    PUZZ is a convenient platform to manage registration of clinical trial information and recruitment progress after registration. It also has a function of panelising potential patients in the hospital.
    What PUZZ can do:
    • Vendor management
    • Campaign management
    • Referral management
    • Visit management
    • System training
    • Double entry check
    • Communicate with and send alert to patients
    • Authority management
    • Waiting list of clinical trials
    • Registration of clinical trials to partner networks in real time

    Figure 2: Puzz and the Services it Provides

    An Overview of How the System We Provide Works

    Clinical trial information will be posted by pharmaceutical companies onto puzz where it will link with smt as well as provide a database for further provision of the information to the public in various ways. Smt has a diverse partner network with companies and organizations with patient communities and healthcare communities. Our partner network can be divided into three types: health care media, companies holding clinical trial specialized volunteer databases, and patient advocacy groups. By increasing awareness of clinical trials through our partner network it is possible to efficiently educate patients, their families, and people suffering from health problems about the opportunities that clinical trials present. Other than that, clinical trial information will also be published via posters and leaflets in medical facilities, brochure distribution to patients in hospitals and leaving contact information on medical institution homepage as well as pharmaceutical companies’ pipelines. When potential participants apply, they will be screened online according to selection exclusion criteria and qualified individuals will then be referred to investigative sites.

    Figure 3: Overview on How Smt and Puzz Works

    Contact us

    Please feel free to inquire using the form below. We will respond as soon as possible between 9:30 and 18:30 (Monday – Friday Japan Tokyo time).