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      Participatory Research with Older Adults with AMD: Co-Designing a SMART Diet Diary App

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      Proceedings of the 28th International BCS Human Computer Interaction Conference (HCI 2014) (HCI)

      BCS Human Computer Interaction Conference (HCI 2014)

      9 - 12 September 2014

      User-centred design (UCD), Participatory design (PD), Age-related macular degeneration, Older adults, Mobile assistive technology, Diet diary

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          The global population of people aged 60 years and older is growing rapidly. In the UK, there are currently around 10 million people aged 65 and over, and the number is projected to rise by 50% in the next 20 years (RNIB, 2013). While ongoing advances in information technology (IT) are undoubtedly increasing the scope for IT to enhance and support older adults’ daily living, the digital divide between older and younger adults – 43% of people below the age of 55 own and use a smartphone, compared to only 3% of people aged 65 and over (AgeUK, 2013) – raises concerns about the suitability of technological solutions for older adults, especially for older adults with impairments. Evidence suggests that sympathetic design of mobile technology does render it useful and acceptable to older adults: the key issue is, however, how best to achieve such sympathetic design when working with impaired older adults. We report here on a case study in order to outline the practicalities and highlight the benefits of participatory research for the design of sympathetic technology for (and importantly with) older adults with impairments.

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          Complement factor H polymorphism, complement activators, and risk of age-related macular degeneration.

          The evidence that inflammation is an important pathway in age-related macular degeneration (AMD) is growing. Recent case-control studies demonstrated an association between the complement factor H (CFH) gene, a regulator of complement, and AMD. To assess the associations between the CFH gene and AMD in the general population and to investigate the modifying effect of smoking, serum inflammatory markers, and genetic variation of C-reactive protein (CRP). Population-based, prospective cohort study of individuals aged 55 years or older (enrollment between March 20, 1990, and July 31, 1993, and 3 follow-up examinations that were performed between September 1, 1993, and December 31, 2004) in Rotterdam, the Netherlands. The CFH Y402H polymorphism was determined in a total of 5681 individuals. Information on smoking, erythrocyte sedimentation rate, CRP serum levels, and haplotypes of the CRP gene were assessed at baseline. All severity stages of prevalent and incident AMD, graded according to the international classification and grading system for AMD. The frequency of CFH Y402H was 36.2% (4116/11,362 alleles). At baseline, there were 2062 persons (36.3%) with any type of AMD (prevalent cases), including 78 (1.4%) with late AMD (stage 4). During follow-up (mean, 8 years; median, 10 years), 1649 (35.5%) of 4642 participants progressed to a higher stage of AMD (incident cases), including 93 (5.6%) who developed late AMD. The odds ratio (OR) of AMD increased in an allele-dose manner with 2.00 (95% confidence interval [CI], 1.56-2.55) for stage 2 AMD, 4.58 (95% CI, 2.82-7.44) for stage 3 AMD, and 11.02 (95% CI, 6.82-11.81) for stage 4 (late, vision threatening) AMD for homozygous persons. Cumulative risks calculated by Kaplan-Meier analysis of late AMD by age 95 years were 48.3% for homozygotes, 42.6% for heterozygotes, and 21.9% for noncarriers. The population-attributable risk for CFH Y402H was 54.0%. Elevated erythrocyte sedimentation rates further increased the OR to 20.2 (95% CI, 9.5-43.0), elevated serum CRP levels to 27.7 (95% CI, 10.7-72.0), and smoking to 34.0 (95% CI, 13.0-88.6) for homozygotes compared with noncarriers without these determinants. The CRP haplotypes conferring high levels of CRP significantly increased the effect of CFH Y402H (P<.01). The CFH Y402H polymorphism may account for a substantial proportion of AMD in individuals similar to those in the Rotterdam Study and may confer particular risk in the presence of environmental and genetic stimulators of the complement cascade.
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            Ability-Based Design

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              The MacDQoL individualized measure of the impact of macular degeneration on quality of life: reliability and responsiveness.

              To investigate the MacDQoL test-retest reliability and sensitivity to change in vision over a period of one year in a sample of patients with age-related macular degeneration (AMD). A prospective, observational study. Patients with AMD from an ophthalmologist's list (n = 135) completed the MacDQoL questionnaire by telephone interview and underwent a vision assessment on two occasions, one year apart. Among participants whose vision was stable over one year (n = 87), MacDQoL scores at baseline and follow-up were highly correlated (r = 0.95; P .80; only two were correlated <.7. There was no difference between baseline and follow-up scores (P = .85), indicating excellent test-retest reliability. Poorer quality of life (QoL) at follow-up, measured by the MacDQoL present QoL overview item, was associated with deterioration in both the better eye and binocular distance visual acuity [VA] (r = 0.29; P = .001, r = 0.21; P = .016, respectively; n = 135). There was a positive correlation between deterioration in the MacDQoL average weighted impact score and deterioration in both binocular near VA and reading speed (r = 0.20; P = .019, r = 0.18; P = .041, respectively; n = 135). The MacDQoL has excellent test-retest reliability. Its sensitivity to change in vision status was demonstrated in correlational analyses. The measure indicates that the negative impact of AMD on QoL increases with increasing severity of visual impairment.

                Author and article information

                September 2014
                September 2014
                : 32-41
                School of Engineering &

                Applied Science,

                Aston University,

                Birmingham, B4 7ET
                School of Informatics,

                City University London,


                EC1V 0HB
                © Lilit Hakobyan et al. Published by BCS Learning and Development Ltd. Proceedings of the 28th International BCS Human Computer Interaction Conference (HCI 2014), Southport, UK

                This work is licensed under a Creative Commons Attribution 4.0 Unported License. To view a copy of this license, visit

                Proceedings of the 28th International BCS Human Computer Interaction Conference (HCI 2014)
                Southport, UK
                9 - 12 September 2014
                Electronic Workshops in Computing (eWiC)
                BCS Human Computer Interaction Conference (HCI 2014)
                Product Information: 1477-9358BCS Learning & Development
                Self URI (journal page):
                Electronic Workshops in Computing


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