All posts related to "patients"

Global RA Network present results of international survey of the rheumatoid arthritis patient care experience at ACR / ARHP Annual Meeting

Global RA Network present results of international survey of the rheumatoid arthritis patient care experience at ACR / ARHP Annual Meeting

The Global RA Network, founded by patient-led national arthritis organizations from 21 countries, presented the results of a global survey – “Patient Experiences of Rheumatoid Arthritis Models of Care: An International Survey”1 – investigating patient-reported experiences of rheumatoid arthritis models of care at the American College of Rheumatology’s (ACR) / Association of Rheumatology Health Professionals (ARHP) Annual Meeting.

GlobalRANetwork Poster at ACRAt an ACR poster session on November 5, 2017, Cheryl Koehn, lead author of the abstract and President of Arthritis Consumer Experts, Canada’s largest patient-led arthritis organization, said: “The survey highlights the difference between best practice RA models of care and the patient’s lived experience of managing a life-long condition like RA. The survey will also advance collaboration between the RA patient organizations involved in the Global RA Network. By analyzing and interpreting the survey results for each participating country, the Global RA Network can develop education and information initiatives to raise awareness of symptoms and ensure RA patients receive the best possible care.”

The first crowd-sourced research of its kind designed by RA patients, for patients, to better learn what their care experiences are like in the their country, the global survey fielded responses from 2,690 respondents from 14 countries in Europe, the Middle East, and North and South America. The survey highlights self-reported gaps and delays in all five key elements of a standardized RA models of care, including significant delays to diagnosis and specialist access globally, delayed therapy effectiveness assessment, and additional education/information to increase the level of confidence to describe RA and improve effective self-care practice.

Key takeaways: Continue reading

Le Réseau PR mondial lance son site Web

Le comité ACE (Arthritis Consumer Experts) dirige la création du premier réseau mondial regroupant les organisations de patients atteints de PR.
Global RA Network Banner
Le comité ACE a collaboré à la création du premier réseau mondial regroupant les organisations de patients atteints de polyarthrite rhumatoïde. Fondé en 2016 par des organisations de patients souffrant de PR et des leaders de 18 pays, le Réseau PR mondial tisse des relations internationales, identifie des initiatives et des objectifs communs et travaille à les réaliser afin d’améliorer la qualité de vie des personnes atteintes de PR partout dans le monde.

Le Réseau PR mondial lance aujourd’hui son propre site Web : http://globalranetwork.org/. Ce site constitue, pour les personnes atteintes de PR, les fournisseurs de soins et les gouvernements, un point de rencontre en ligne de même qu’une plateforme d’échanges sur le travail en cours et les ressources en matière d’information et d’éducation.

La première initiative du Réseau PR mondial aura été de mener à bien une enquête auprès de patients quant à leur propre expérience des modèles de soins de la PR. Les conclusions de cette enquête seront présentées au cours de la prochaine rencontre scientifique annuelle de l’American College of Rheumatology, qui se tiendra le 5 novembre 2017.

À la lumière des constats de l’enquête, le Réseau PR mondial élaborera des programmes d’information et d’éducation qui comprendront également des initiatives de défense du dossier de la PR susceptibles d’améliorer la perception des patients du type et de la qualité des soins qu’ils devraient recevoir et permettre ainsi, à tous les pays membres, d’obtenir les meilleurs résultats de traitement possibles.

Arthritis community leaders launch new patient portal to improve patient care in BC

Arthritis community leaders launch new patient portal to improve patient care in BC

ArthritisBC+Me Portal helps BC patients learn about arthritis programs and resources

ArthritisBC+Me Portal banner for arthritis in bc

 

A group of BC’s leading arthritis specialists, researchers and patient groups are pleased to announce the launch of the ArthritisBC+Me portal designed to help BC patients learn about arthritis and local programs best suited to their needs. The first of its kind in Canada, the portal represents the commitment of the community partners – Arthritis Consumer Experts, Arthritis Research Canada, Mary Pack Arthritis Program, The Arthritis Society and the BC Society of Rheumatologists – to making arthritis information and services more accessible to the estimated 1 in 5 British Columbians who are living with arthritis.
Continue reading

Demande de rétroaction de patients sur le tocilizumab (Actemra®) dans le traitement de la maladie de Horton.

Stickman with megaphone calling for patient inputDemande de rétroaction de patients sur le tocilizumab (Actemra®) dans le traitement de la maladie de Horton.

Souffrez-vous de la maladie de Horton ? Vos commentaires seraient précieux.

Le Programme commun d’évaluation des médicaments (PCEM) demande actuellement que les patients et leurs fournisseurs de soins fassent parvenir aux organismes regroupant les patients leurs commentaires et suggestions sur la présentation par le fabricant du tocilizumab (Actemra®) dans le traitement de la maladie de Horton.

Partie intégrante de l’Agence canadienne des médicaments et des technologies de la santé, le PCEM examine avec objectivité et rigueur l’efficacité et la rentabilité des médicaments et fournit des recommandations aux régimes d’assurance-médicaments (à l’exception du Québec) quant à leur inscription sur la liste des médicaments assurés.

Afin de l’aider dans son processus de recommandation, le PCEM accepte la rétroaction d’organisations et de groupes de patients comme le comité ACE (Arthritis Consumer Experts). Parce que la rétroaction de patients est essentielle à la prise de décision du gouvernement sur les médicaments, nous désirons recueillir vos commentaires pour communication au PCEM.

Voici l’information que recherche le PCEM dans ce dossier particulier : Continue reading

Patients with rheumatoid arthritis are now living longer

Image of an angel statute to represent lower mortality rate in rheumatoid arthritis patientsA study published by researchers at the University of British Columbia suggests that rheumatoid arthritis (RA) patients are no longer facing a higher risk of death than the general population. The study analyzed mortality data and looked at death rates among RA patients versus deaths among a control group of the general population.

The study included an estimated 25,000 people. Patients were divided into two groups – the first one was those with RA cases diagnosed between the years 1996 and 2000 and the second group was those with RA cases diagnosed from 2001 to 2006. Researchers looked at and tracked doctor visit records and other patient information through the year 2010.

Continue reading

The cost of non-adherence to prescribed medications

Pills and needles to portray medication nonadherenceAn article published in the Annals of Internal Medicine estimated that non-adherence resulted in approximately 125,000 deaths and at least 10 percent of hospitalizations, costing US health care system $100 and $289 billion a year.

The article reports that “studies have consistently shown that 20 percent to 30 percent of medication prescriptions are never filled, and that approximately 50 percent of medications for chronic diseases are not taken as prescribed. The review found that for people who do take prescription medications, they only take about half the prescribed doses.

Researchers from Northwestern University found that one-third of kidney transplant patients don’t take their anti-rejection medications. Other studies show that 41 percent of heart attack patients don’t take their blood pressure medications and only 50 percent of children with asthma use their inhalers as prescribed.

In an article in the New York Times, Dr. Bruce Bender, co-director of the Centre for Health Promotion at National Jewish Health in Denver, explained: “When people don’t take the medications prescribed for them, emergency department visits and hospitalizations increase and more people die. Non-adherence is a huge problem, and there’s no one solution because there are many different reasons why it happens.”

Continue reading

Modèles de soins pour les patients souffrant de polyarthrite rhumatoïde : une enquête internationale

Faisant partie d’un réseau international d’organisations de patients atteints de PR, Arthritis Consumer Experts vous invite à participer à une enquête mondiale portant sur des patients souffrant de PR et qui s’attachera à l’examen du diagnostic, du traitement et des soins reçus par ces patients pour leur polyarthrite rhumatoïde. L’objectif de cette enquête est de mieux comprendre, selon la perspective et l’expérience du patient, comment les « modèles de soins » actuels pour le traitement de la polyarthrite rhumatoïde se comparent, d’un pays à l’autre.

Global RA Network Survey/ enquête BannerVotre expérience et votre point de vue comptent beaucoup

Parce que vous êtes une personne atteinte de PR, partager votre expérience à propos des soins que vous recevez est d’une importante capitale. Grâce à votre aide, nous serons en mesure d’atteindre les objectifs de cette enquête et d’élaborer des programmes d’information et d’éducation susceptibles d’améliorer la perception des patients des modèles de soins offerts pour la PR afin d’obtenir les meilleurs résultats de traitement possible dans votre pays

Comment participer ?

Si vous acceptez de participer, vous devrez répondre à un questionnaire d’enquête qui exigera environ 10 minutes de votre temps. Tous les renseignements recueillis dans le cadre de cette enquête seront regroupés pour respecter la confidentialité et protéger votre anonymat.

Pour être admissible à participer à cette étude, vous devez :

  • être âgé(e) de 18 ans ou plus
  • recevoir des soins de santé au Canada
  • avoir accès à l’Internet

Nous vous remercions de bien vouloir considérer notre demande de participation à cette enquête. Votre participation permettra à d’autres personnes atteintes de PR dans votre pays d’en savoir plus sur les soins de santé qu’ils devraient recevoir.

Veuillez cliquer sur ce lien pour répondre au questionnaire.

Join us for our Facebook and Twitter “Live” event! #CRArthritis

Want to know what Canada’s leading rheumatologists are thinking? Join us for our groundbreaking Facebook and Twitter “Live” event!

Canada’s arthritis consumer-patient organizations and groups to host Facebook and Twitter “Live” #CRArthritis Speaker’s Corner

Picture of a microphoneArthritis Consumer Experts (ACE) will be in Ottawa to attend the 2017 Canadian Rheumatology Association (CRA) Annual Scientific and Arthritis Health Professions Association Annual Meetings.

Powered by ACE and supported by representatives from the Arthritis Patient Advisory Board of Arthritis Research Canada, Canadian Arthritis Patient Alliance, Canadian Spondylitis Association, and Patient Partners, Arthritis Broadcast Network (ABN) will be interviewing keynote speakers, meeting attendees, patients living with arthritis, and disease experts. We invite you to participate in the Facebook and Twitter “Live” event. Like, share and retweet the live interviews, send us your comments or questions through Facebook and Twitter during the interviews.

Join the conversation at the Arthritis Broadcast Network Facebook page or Twitter (@ArthritisNetwrk) feed using #CRArthritis. Interviews will take place from Wednesday, February 8th until 12:00 pm, Friday, February 10th.
Continue reading

Denosumab maintains bone quality in rheumatoid arthritis

Japanese LanternsA recent study from Keio University School of Medicine in Tokyo showed that denosumab inhibited the progression of bone erosion and increased bone mineral density (BMD) in Japanese patients with rheumatoid arthritis (RA) who were on methotrexate. This study confirmed the findings of an earlier study conducted in the U.S. and Canada.

The study followed 350 patients who have lived with RA for 6 months to less than 5 years’ duration. They were randomized to receive placebo or denosumab in doses of 60 mg every 6 months, every 3 months, or every 2 months. Participants were grouped together according to their glucocorticoid use and rheumatoid factor (RF) status at baseline. Throughout the study, they continued taking methotrexate at 6 to 16 mg/week and were treated with supplemental vitamin D and calcium. Researchers found that the changes from baseline in modified Sharp erosion score at 12 months were lower in the denosumab groups than in the placebo group. Continue reading

Arthritis’ devastating impact on young adults

young adultsA recent Canadian research published in BMC Musculoskeletal Disorders found that older adults with arthritis are less likely than young and middle-aged adults to report worse outcomes that include more pain, sleep disturbance, and impaired mental health. Regardless of age, the researchers stress the importance of timely diagnosis and treatment for all ages in order to prevent or minimize arthritis-related impairment.

The study examined and compared the physical and mental health effects of arthritis in older Canadian adults (75+ years) and younger adults (20-44, 45-64, and 65-74 years). Led by Siobhan O’Donnell, MSc, an epidemiology researcher at the Centre for Chronic Disease Prevention in Ottawa, the study analyzed poll data on 4,565 respondents from the arthritis component of the 2009 Survey on Living with Chronic Diseases in Canada (a cross-sectional follow-up survey to the larger 2008 Canadian Community Health Survey). The survey looked at the following: Continue reading