Ontario Health’s sickle cell disease quality standard provides guidance on the care of children,
young people, and adults with sickle cell disease. Where appropriate, it also
addresses the needs of families and caregivers or other substitute
decision-makers. It applies to all pediatric and adult health care settings
relevant to sickle cell disease, including:
- Hospitals
- Emergency departments and urgent care
clinics
- Primary care
- Specialist care
- Home and community care
The quality standard focuses on screening for
and preventing complications, assessing and managing acute and chronic complications,
and using disease-modifying therapies.
The quality standard includes eight quality
statements addressing areas that have high potential for improving the quality
of care provided to people with sickle cell disease in Ontario.
New Launch: To support the implementation of the sickle cell disease quality standard by organizations providing direct care for people with sickle cell disease, the first version of an implementation toolkit [disponible en français] has been developed. The toolkit provides suggested change ideas, resources and tools for each of the quality statements where emergency departments are the main audience. This toolkit will be updated regularly based on user feedback and input. If you have questions, comments or feedback please contact: QualityStandards@OntarioHealth.ca.
Below is a sample of tools that may help
you with the implementation of the quality statements in practice, organized
according to purpose. Many of these tools will help support multiple quality
statements.
This list is not exhaustive. Are there
other tools or resources you use? Do you have experience implementing these or
other tools? If so, please share your thoughts in the comments section below!
Tools and Resources to Support Clinical Practice
Educational Opportunities for Health Care Professionals
Sickle Cell Disease: Tools and Resources for
Patients, Families, and Caregivers
- Be the Spark Tools & Guides: a care guide, patient brochure, and
infographic from Be the Spark, a group of sickle cell disease advocacy
organizations in the United States
- A Guide to Nutrition for Sickle Cell Disease: a nutrition guide developed by the TAIBU Community Health
Centre in Toronto that offers advice on nutrition needs, food sources of
important nutrients, coping strategies, and sample recipes
- Hydroxyurea for Sickle Cell Disease: an informational booklet on hydroxyurea treatment
from the American Society of Hematology
- Materials & Multimedia on Sickle Cell Disease: information
and resources on sickle cell disease from the US Centers for Disease Control
and Prevention, including fact sheets, infographics, videos, and podcasts
- Newborn Screening Ontario: Sickle Cell Disease: information on sickle cell disease
and disease screening provided by Newborn Screening Ontario, a provincial
program that coordinates newborn screening results in Ontario
- Red Blood Cell Disorders Hub: an online space provided by the
University Health Network for people to connect about sickle cell disease and
other red blood cell disorders in Ontario
- Sickle Cell 101: Sickle Cell Education for All!: educational resources on sickle
cell disease from Sickle Cell 101, an organization specializing in education
for patients, caregivers, health care providers, allies, and the public. See
also Sickle Cell 101’s
Sickle Cell Podcast and Sickle Cell Studies,
a global patient-friendly clinical trial locator that also provides information
on participating in sickle cell disease research
- Sickle Cell Association of Ontario (SCAO): a community-based organization that provides
support and resources for individuals, families, and communities affected by
sickle cell disease, including information on
sickle cell disease and educational events
- Sickle Cell Awareness Group of Ontario (SCAGO): a provincial organization that
provides evidence-based support to families affected by sickle cell disease. It
supports clinical research and engages in psychosocial research, health
promotion, patient and care provider education, community awareness, and the
development of best-practice guidelines.
Parents and caregivers
can find helpful resources, including information on:
- Sickle Cell Disease: A Practical Guide for Parents: an
overview of sickle cell disease for parents from the Hospital for Sick Children
General Tools and Resources for Patients,
Families, and Caregivers
- ASE Community
Foundation for Black Canadians with Disability:
an organization aiming to
bridge the knowledge and service gaps in health care for Black Canadians with
critical research and partnerships centring on disability justice and the
unique experiences of Black Canadians with disabilities
- iCanCope: a pain education and self-management platform that is tailored for youth and adults living with acute and persistent pain. iCanCope is currently part of a number of research studies in collaboration with the Hospital for Sick Children and the Centre for Global eHealth Innovation
- Patient Ombudsman: an independent, arm’s-length
organization established by the Ontario provincial government to receive,
respond to, and help resolve complaints from patients, residents, and
caregivers about their experiences in Ontario’s public hospitals, long-term
care homes, and home and community care
Resources for Teachers and Schools
Other Resources
- Quality Standards: Other Ontario
Health quality standards relevant to caring for people with sickle cell disease
include: