Developing and testing accessible web-based support for diabetes self-management

Ali Rowsell, Ingrid Muller, Antonia Lucas, Chris Byrne, Elizabeth Murray, Don Nutbeam, Lucy Yardley on behalf of the Diabetes Literacy Consortium

Research context and background

• 32 Million people in the EU live with diabetes, 4th largest cause of death in the EU

• Self-management critical

• Health literacy linked to outcome as it affects self-management

• This study part of larger project looking at diabetes self-management for people with lower levels of health literacy across the EU

AimsTo develop and trial web-based support suitable for people with lower levels of health literacy, i.e.:

‘A person’s ability to access, understand, appraise and use health information to manage his or her own health.’

Specifically, to examine the potential for web-based materials and tools to enhance support by:

tailoring the material to the user (e.g. gender, attitudes)

employing engaging audio-visual presentation and quiz formats

providing interactive tools to support self-management tasks (e.g. guidance for choosing and planning lifestyle changes)

Website development

• Developed through consultations with expert panel on study design and web content: focus of intervention on physical activity

• Website developed using LifeGuide software www.lifeguideonline.org and designed to include audio-visual and interactive features

• English (UK, USA, Ireland) version complete, including extensive qualitative testing; German (Germany, Austria) currently being tested. RCT in all 5 countries from July 2014 onwards

Qualitative study

How do people with varying levels of health literacy (HL) view the website content and format?

Participants recruited through primary and secondary care and community

Diverse sample: by age, gender & health literacy (HL) (assessed using a single item HL measure, validated by correlation with HLS-EU-Q16: r= .65)

‘Think Aloud’ interviews followed by thematic analysis with elements of grounded theory (e.g. constant comparison)

Findings• UK/USA/Irish data (n=51)• Mean age 60 years: 25 female, 26 male• Time since diagnosis: <5 years(n=21), ≥5 years

(n=30)• HL levels: 7 with low HL, 17 with medium HL,

26 with high HL, 1 unknown • 4 main themes (information novelty, promoting

motivation, experience of interactive features, reactions to audio-visual content) and 9 sub themes

• Most people found the website promoted motivation

Reactions to website content and format

Information novelty: Most people learned new or surprising factsLevel of advice: Website was at right level, not seen as patronisingViews on advice: Most people agreed with the adviceMost people liked the concise, simple Website appearanceFew differences by HL level, age, gender, time since diagnosis

Experience of interactive features

Views of the quiz: Most people liked the quiz and found it

informative, although a few disliked it; womentended to be more enthusiastic about it

Views of tailored feedback: Occasional comments

on liking feedback and the planner certificateViews on the interactive planner: most people

commented on the interactive planner and found it encouraging; others found it difficult to enter activities

Few differences by HL level, age, time since diagnosis; men more likely to dislike quiz

Reflections on the audio-visual content

Views of visual images: Most people liked the use of imagesViews of photographic sequences: Popular with most people and people related to these. Some people disliked elements of them or found them ‘ridiculous’ or ‘not believable’ - but people rarely looked at the text versions.Few differences by HL level, age, time since diagnosis, but men more likely to dislike the photographic sequences than women and USA participants really liked them

Conclusions

• Participants generally like the website and find the interactive features engaging

• Findings similar by HL level, age, time since diagnosis and country

It is possible to make a website aimed at people with low HL that is is also liked by most people with higher levels of HL

AcknowledgementsThanks to:•Project team: Lucy Yardley, Don Nutbeam, Elizabeth Murray, Chris Byrne, Antonia Lucas on behalf of the Diabetes Literacy Study Group•Consultation group: Paul Little, Beth Stuart, Scott Lloyd, Kath Bernard, Paul Roderick, Robyn Dixon, Pal Kingshuk, Sian Smith, Richard Holt, Brian Williams, Jackie Sturt, Deborah Morrisson, Jo Adams, The Southampton Health Literacy Group and EU Diabetes Literacy group. •European partners- All members of the EU Diabetes Literacy group and especially those collecting data for us: Sarah Gibney, Gerardine Doyle, Courtney Lyles, Dean Schillinger, Lina Tieu, Florian Rothlin, Juergen Pelikan, Kristin Ganahl, Gabriele Mueller, Peter Schwarz, Henna Riemenschneider•Expert patients: Andy Hansom, Wendy Heath•People who helped with voiceovers and photos•Our participants in the UK, Ireland, USA, Germany and Austria•Lucy Yardley and Cindy Graham for PhD supervision