A newly published review paper demonstrate that generic and condition-specific patient-reported outcome measures have not been developed with people who may struggle with reading and comprehension. It is estimated that 1 in 5 people in the UK have difficulty in locating specific services in the Yellow Pages or reading a newspaper. And we see a growing number of people developing cognitive impairments during the life course (e.g dementia). Cumulatively the population segment excluded through measures deemed to reflect ‘the patient’s perspective’ (although more often than not it is rather a response on a measure to what researchers and clinicians think matters!) is substantial. The drive to routinely use these measures as integral to ‘quality improvement’ in services comes at the cost of excluding people who cannot engage meaningfully with these tools from this process. This would be a violation of equality, disability and human rights legislation and has the potential of widening inequalities. The review paper can be found here #[Patient Reported Outcomes in COPD| http://www.ncbi.nlm.nih.gov/m/pubmed/23417577/
SDHI are holding a further webinar ‘Ageing and compound caregivers of people with learning disabilities’ on Thursday 18th April 2013 at 3.00pm (GMT), led by Elizabeth Perkins, Associate Director, Florida Center for Inclusive Communities, Department of Child and Family Studies, College of Behavioral and Community Sciences, University of South Florida. For further information please see webinar flyer
SDHI are holding a further webinar ‘Ageing and compound caregivers of people with learning disabilities’ on Thursday 18th April 2013 at 3.00pm (GMT), led by Elizabeth Perkins, Research Assistant Professor, Florida Center for Inclusive Communities, Department of Child and Family Studies, College of Behavioral and Community Sciences, University of South Florida. For further information please see webinar flyer (Elizabeth Perkins webinar flyer 18 April 2013)
We have reported earlier on a Knowledge Transfer Partnership project that focuses on the usability of PROMS for people with learning disabilities and/or literacy. Also, we recently hosted a Webinar on this topic and project. Today, we are providing you with a weblink to an audio cast of a presentation on the topic given earlier this year as part of the Open University supported and hosted Social History of Learning Disability Conference in Milton Keynes. This year’s conference focus was ‘Health’. The two-day event was attended by people with learning disabilities, researchers, health and social care practitioners and disability advocate.
In a few weeks time, the project team will be running a workshop and dissemination event in Glasgow.
A few weeks’ ago we reported in a Webinar by Dr Karen Ritchie and Deepa Jahagirdar (if you missed it, you can find the link to the recording on our blog) about a project between the universities of Glasgow and Dundee and Healthcare Improvement Scotland that examines the usability and accessibility of patient-reported outcome measures or PROMS for people with learning disabilities and low literacy. The research has led to the development of a reference manual or user guide, which is intended for health professionals who are tasked with PROM measurement in clinical practice and who may have to reflect on the practice of using PROMS with people with learning disabilities or low literacy.
Please assist us with comments about our new reference user guide for health professionals. The purpose of the reference guide is to highlight challenges in routine outcome measurement when working with people with low literacy and/or learning disabilities. Tell us, what you think. Will the guide be useful? How can we improve it? What will enhance its usefulness and adoption by health professionals?
- What are your first impressions?
- What do think about the format/presentation of the guide?
- What about the content? Is it relevant?
- Is the language we use in the guide appropriate?
- Is the document comprehensive enough or is anything missing?
- Is the guide accurate and correct?
- How could you use it in practice?
- Is there anything else you want to let us know about?
You can also find a pdf version of the PROMS Use Reference Guide Low Literacy and Learning Disability. Please review the reference guide below and send your comments by email to Deepa.Jahagirdar @nhs.net
A project funded as a Knowledge Transfer Project (KTP) is currently being conducted in partnership between Healthcare Improvement Scotland (HIS) and the College of Social Science, Institute on Health and Wellbeing, University of Glasgow and the Social Dimensions of Health Institute (SDHI), University of Dundee. This project is linked to initiatives in the health care sector to use Patient Reported Outcome Measures or PROMS to monitor the quality of service delivery in clinical practice. Patient Reported Outcome Measures are questionnaires that ask patients to report on their health or functional status. In England they have mostly been used to monitor changes in outcomes after acute, hospital-based interventions (e.g. hip or knee replacement or varicose vein surgery). They can be used to monitor patients’ health and improve treatment. A pilot has been conducted in England to assess health outcomes of people with chronic obstructive pulmonary disease (COPD) as well. Clearly, COPD is a major public health concern and the delivery of appropriate, safe and high quality care is critical. The routine use of PROMS, which are typically presented in the form of standardised, text-based questionnaires raises questions about the appropriateness and accessibility of these tools for people with low literacy and/or learning disabilities. These are just two population groups that may be systematically excluded from participation in quality improvement efforts. The team just published a commentary on this issue in the journal Health Expectations.
The ultimate aim of the project is to develop a guide that will help professionals critically evaluate the appropriateness of PROMS and consider reasonable adjustments in the administration of PROMs when confronted with patients who might struggle because of PROMs’ format, design or complexity. The guide will be based on findings from a structured literature review as well as interviews and focus groups with patients and professionals about how PROMs could be made more accessible and easy to use.
The guide will be developed in multiple formats and disseminated to health professionals across NHS Scotland.
SDHI will host a Webinar presented by Dr Karen Ritchie, Head of Knowledge Management at Healthcare Improvement Scotland and Deepa Jahagirdar, Research Associate at Healthcare Improvement Scotland, on 9th May at 3:30pm (please note this time is different than the one shown on the image!) to introduce the project and discuss findings. If you are interested in participating, please register with us Dr Fred Comerford fac1 @st-andrews.ac.uk