Spring 2018 (Volume 28, Number 1)

Patients and the Primary Care Provider

A New Patient Charter Outlines Arthritis Patients’ Rights and Responsibilities

By Dawn P. Richards, PhD; Linda Wilhelm; and Laurie Proulx

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The Canadian Arthritis Patient Alliance (CAPA) undertook a grassroots campaign in 2014 to update the Canadian Arthritis Patient Bill of Rights.¹ The goal was to bring new life to this important document, which largely served as an advocacy piece, and to emphasize the key role of arthritis patients in recognizing symptoms and accessing care.²

The Arthritis Patient Charter was a collaborative effort spearheaded by CAPA with input and feedback from over 730 community stakeholders from across Canada. From its initial draft to its final inception, the Arthritis Patient Charter took only eight months to complete, a testament to the Canadian arthritis community’s enthusiasm and ability to mobilize its resources.

The Arthritis Patient Charter is available at CAPA’s website (arthritispatient.ca/projects/arthritis-patient-charter/) in English and French, in an easily accessible format.³

Dr. Dawn P. Richards, PhD, Vice President, CAPA, Toronto, ON

Ms. Linda Wilhelm, President, CAPA, Midlands, Kings Country, NB

Ms. Laurie Proulx, 2nd Vice President, CAPA, Ottawa, ON

References:

1. Canadian Arthritis Bill of Rights, 2001. Available at www.arthritis.ca/document.doc?id=565.

2. Richards DP. The Arthritis Patient Charter. CRAJ 2014; 24(4):8-9.

3. Canadian Arthritis Patient Alliance. Arthritis Patient Charter, 2014. Available at:     www.arthritispatient.ca/projects/arthritis-patient-charter/.

The Patient’s Perspective

Patient Experiences of Rheumatoid Arthritis Models of Care: An International Survey

By Cheryl Koehn

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In 2016, Arthritis Consumer Experts led the formation of a global network of 18 patient organizations working on behalf of people living with rheumatoid arthritis (RA). To complement the Arthritis Alliance of Canada (AAC) Inflammatory Arthritis Models of Care (IA MOC) work, the network’s first project was an online survey aimed at uncovering RA Models of Care (RA MOC) gaps by surveying patients living with the disease.

The survey, which was the first crowd-sourced research of its kind, was conducted in Canada and 24 other countries from March-June 2017. Questions focused on five domains of the AAC’s own IA MOC work: 1) patients recognize symptoms and seek care; 2) access to a specialist; 3) medical management; 4) shared chare; and 5) patient self-management.

Several RA MOC gaps were identified among the 2,690 respondents, including:

• 51% reported a delay of 4-6 months to over 2 years from symptom onset to receiving an RA diagnosis;
• 93% reported they helped their rheumatologist diagnose their RA through their description of symptoms; only 57% reported having a thorough joint and skeletal system examination;
• 58% were currently treated with methotrexate only;
• 30% said it took from 4 months to “never” for an effectiveness review of their first initiated medication;
• Approximately half lacked knowledge when describing their current treatment as biological or not;
• 14-45% needed more disease information or would like to talk with other patients or their rheumatologist about their RA;
• 82% and 46% reported their main source of RA information was through internet searches or social networks, respectively.

These survey results will guide the Global RA Network’s development of pan-country and specific country initiatives to work towards closing RA MOC gaps at the patient level. For more information, please visit globalranetwork.org.

Ms. Cheryl Koehn, President, Arthritis Consumer Experts, Vancouver
BC, on behalf of the Global RA Network

Reference:

Koehn C et al. Patient experiences of rheumatoid arthritis models of care: an international survey. Poster presented at the 2017 ACR Annual Meeting, 3-8 November 2017, San Diego, CA. Abstract #353.

Successfully Implementing MOCs in Primary Care: The OA Tool for Family Practice

By The College of Family Physicians of Canada

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An evidence-based osteoarthritis (OA) toolkit for use in primary care was recently launched in September 2017 to help close the knowledge to practice gap for OA care. This toolkit was a collaborative effort between the Arthritis Alliance of Canada, the College of Family Physicians of Canada, and the Centre for Effective Practice. It includes specific recommendations on non-pharmacologic and pharmacologic therapies as well as resources to promote patient self-care.

The bilingual toolkit is available at www.arthritisalliance.ca/en/osteoarthritis-toolbox. By November 2017, the toolkit had been provided to over 30 AAC member organizations and their communities. Promotional efforts to widely disseminate the tool included an Internet, email and social media campaign. In the first three months, the toolkit was downloaded by more than 1,200 users and there have been thousands of webpage views and Twitter impressions.

Future dissemination efforts include conference exhibits and workshops, such as the Family Medicine Forum (fmf.cfpc.ca). We are also developing an OA-centred eLearning module for launch in summer 2018–visit cfpc.ca/OATool/ for regular updates.

Several RA MOC gaps were identified among the 2,690 respondents, including:

The College of Family Physicians of Canada, Mississauga, ON