According to the World Health Organization, patients should have the knowledge and skills to understand options being provided to them by their healthcare providers. This is what’s called “patient empowerment”, or “patient-centered care”, a move by healthcare policy makers around the world to allow greater control by patients over their own healthcare.
To that end, patients and healthcare providers have converged in Canada to create the award-winning CHOICE-D guide for patients suffering from depression. The CANMAT Health Options for Integrated Care and Empowerment in Depression Patient and Family Guide to Depression Treatment was created in partnership with individuals who have personal experience with depression, for people living with depression.
“The goal is to support and empower individuals and caregivers to understand evidence-based treatments for managing depression,” Andrew Kcomt told us. Kcomt is the Knowledge Translation and Research Manager with the Mood Disorders Association of Ontario (MDAO), one of the organizations that prepared the guide. “The guide includes information about medications, psychological treatments, brain stimulation, and complementary and alternative treatments."
According to Statistics Canada, nearly one in eight adults will suffer from a mood disorder during their lifetime such as depression (11.3 per cent) and women are more likely to suffer from depression than men. Symptoms can include a depressed mood, feelings of guilt or worthlessness, sleep disturbances, a change in weight or appetite, loss of interest in activities that were normally enjoyed, fatigue, thoughts of death, and poor concentration.
“Depression affects people from all walks of life, no matter what their background, ethnicity; rich and poor. All are susceptible,” Kcomt told us. “Given the ongoing stigma that surrounds mental health issues, this guide is for everyone.”
The idea for the booklet originated from an Ontario Brain Institute knowledge translation grant proposal led by Dr. Sagar Parikh. The project involved a collaboration of three organizations: 1) MDAO, a leader in peer support for individuals living with mood disorders and their families to recover and heal; 2) CAN-BIND, a major national research network to improve the treatment of depression; and 3) CANMAT, a network of leading clinicians and scientists in mood and anxiety disorders, which publishes mood disorder treatment guidelines. MDAO recruited a group of patients and family members to develop the guide to depression treatment, supported by content experts in knowledge translation, patient advocacy, patient-oriented research, and psychiatry.
“The goal of the CHOICE-D guide is to create an accessible document for patients and loved ones that simplifies evidence-based information on managing depression,” Kcomt told us. "Multiple stakeholders helped to create this guide including the public, patients, treatment providers, researchers, and government officials.”
Kcomt says the primary objectives of the guide are to educate patients to gain a better understanding of their symptoms through the provision of evidence-based treatment options and to provide tools to facilitate active discussions with their healthcare teams. The guide will also serve to empower patients and their families in their recovery through engagement, collaborative decision-making, and increased satisfaction with their care.
“Feedback from the public has been highly positive and the online version has been downloaded close to 5000 times in North America, the UK, France, Spain, Germany, Ukraine, India and Australia,” Kcomt told us. “We are actively looking for feedback from the public and our community stakeholders through the evaluation of increased patient knowledge about treatment options, self-competence, communication skills, and the ability to actively engage in discussion with their healthcare teams.”
CHOICE-D is available on the MDAO website free of charge and is being actively disseminated, along with evaluation of its impact. A translated French and simplified Chinese version of the guide will be made available later this year. A number of end-users such as peer support facilitators, caregivers and health care providers, will be trained on how to use the guide and its tools.
“Having lived experience partners in research is critical to prioritizing research according to what’s important for those living with these challenges,” Kcomt told us. “If you or a loved one is struggling with mental health, please remember that there is always support and hope out there.”
Patricia Tomasi is a mom, maternal mental health advocate, journalist, and speaker. She writes regularly for the Huffington Post Canada, focusing primarily on maternal mental health after suffering from severe postpartum anxiety twice. You can find her Huffington Post biography here. Patricia is also a Patient Expert Advisor for the North American-based, Maternal Mental Health Research Collective and is the founder of the online peer support group - Facebook Postpartum Depression & Anxiety Support Group - with over 1500 members worldwide. Blog: www.patriciatomasiblog.wordpress.com