From aches and pains to timely treatment:  What drives people with arthritis to seek information and treatment?

Description of Project:

Arthritis is the most common cause of severe long-term pain and disability, but getting diagnosed and starting treatments early can lead to better outcomes for people with arthritis. The goal of this review is to understand people’s decision-making process for seeking help for their arthritis symptoms so that we can work to increase early detection of the disease.

Introduction and Background:

While some people may ask their doctors for a referral to see a specialist in order to alleviate their pain, some may seek advice from friends and families, the Internet, or other health care providers such as a massage therapist or chiropractor. Some simply attempt to manage the symptoms themselves. These ways and means by which people look for information and treatment for their arthritis is a process that we call “help-seeking”.

Different factors may influence help-seeking, such as the type of arthritis, severity of symptoms and how long the person has had the disease. Age, cultural background, personal beliefs, attitudes and knowledge of arthritis, and the availability of health care services may also play a role. While there has been research done that explores help-seeking in arthritis, there is no one study that brings all of these factors together in one comprehensive review. To address this, our project will simultaneously review all these areas in order to provide a thorough view on how people with different types of arthritis seek help, and will uncover areas in which further research and information is needed.

Methodology:

We will use a systematic review as the research method. A systematic review is a way to examine previously published articles and bring together all of the results in an area of study. In this project, we will summarize years of published research on people’s experience with arthritis, how they seek information and treatment and the facilitators and barriers within this process. The information will be grouped by the type and length of diagnosis.

We will present the results at a series of workshops across Canada for researchers, people with arthritis and those who work with them. The feedback and suggestions will be used to refine and develop ways to improve arthritis care.

Participant Recruitment:

No participant will be recruited for this review.

Relevance for People with Arthritis:

This extensive literature review is the first to provide people who have arthritis with a comprehensive view on factors involved in the help-seeking process. Clearly understanding the factors that influence the help-seeking experience is the first step towards increasing the availability of arthritis information and making health care more accessible and timely for people with arthritis.

Consumer Involvement:

Three consumer collaborators helped to develop the research questions, gave valuable comments on the results of the literature review, and will continue to provide feedback during further analysis of the data and at the workshops. They will ensure that the consumer’s perspective is maintained when sharing the findings.

Time Frame and Results:

This research was conducted between May 2007 and May 2010.

After conducting a broad search of the literature from health, behavioral and social sciences, we found 31,146 articles that might be relevant to the topic of help-seeking in arthritis. Upon a thorough and detailed review, 120 of these articles were found which described or evaluated the process of seeking information, treatment, or healthcare services for people with arthritis. We identified four common themes from the arthritis help-seeking literature:

1. seeking diagnosis,
2. seeking traditional treatments and health professional visits,
3. seeking complementary and alternative therapies, and
4. seeking arthritis-related information to enhance self-management.

Based on these 120 articles, there are seven specific areas where further in-depth review is possible:

1. What factors affect peoples’ decisions to seek help for early arthritis symptoms?
2. What is the experience of psychosocial distress in people with arthritis?
3. Does inequity exist in health services utilization by patients with rheumatoid arthritis?
4. What influences peoples’ decisions to use medication for arthritis?
5. What factors are associated with the use of medication for rheumatoid arthritis, osteoarthritis, and general arthritis?
6. What influences peoples’ decisions regarding total joint replacement surgery? and
7. What influences peoples’ decisions to use complementary and alternative therapies?

Funding:

This project is funded by the Canadian Institutes of Health Research

Publications:

Li LC, Adam P, Townsend AF, Cox S, Backman C. From aches and pains to timely treatment: A meta-synthesis of help seeking by people with arthritis. The 15th International Interdisciplinary Conference: Qualitative Health Research Program: 90. Poster Presentation: The 15th International Interdisciplinary Conference. Vancouver, BC.

Li L. From aches and pains to timely treatment: What drives people with arthritis to seek information and treatment? Report prepared for the CIHR. 2009.

Web Links:

• http://www.physicaltherapy.med.ubc.ca/research/arthritis_health_research_and_knowledge_translation/From_aches_and_pains_to_timely_treatment.htm
• http://www.physicaltherapy.med.ubc.ca/faculty_staff/faculty_staff_directory/faculty_directory/Linda_Li/Aches_Pains_Information.htm

Project Team Members:

Co-Principal Investigators:

Linda Li  PT, PhD
Assistant Professor, University of British Columbia
Research Scientist, ARC

Catherine Backman  PhD, OT(C)
Associate Professor, University of British Columbia
Research Scientist, ARC

Co-Investigators:

Paul Adam  MSW
Social Worker, Community Liaison, Mary Pack Arthritis Centre

Susan Cox  PhD
Assistant Professor, University of British Columbia

Anne Townsend  PhD
Post-Doctoral Student, University of British Columbia

Allen Lehman  MA, PhD Candidate
Research Associate, ARC

Jolanda Cibere  MD, PhD
Research Scientist, ARC 

Collborators and Reviewers:

Anamaria Jones  PT, PhD Candidate
Visiting student, Arthritis Research Centre
University of São Paulo, Brazil

Antonio Avina-Zubieta, MD, PhD (Candidate)
Arthritis Research Centre of Canada

Jamil Natour, PhD
Federal University of São Paulo, Brazil

Imperio Lombardi, PhD
Federal University of São Paulo, Brazil

Griselda Galindo, MD
Hospital de Especialidades Centro Médico Nacional "La Raza," Instituto Mexicano del Seguro Social

Consumer Collbarators:

Jay Fiddler (British Columbia)

Meagan Hasek-Watt (Nova Scotia)

Iris Mujicai (Ontario)

Research Coordinator:

Zubin Amarsi  BSc, MHA
Research Coordinator, Arthritis Research Centre of Canada

Cynthia MacDonald, BHK
Research Assistant, Arthritis Research Centre of Canada

Katie Rogers
Research Assistant, Arthritis Research Centre of Canada