Table 2 Included Studies
From: A review of quality of life themes in Duchenne muscular dystrophy for patients and carers
First author | Study type | Data source | N | Country | Method of quality of life measurement |
|---|---|---|---|---|---|
Baiardini et al., 2011 [7] | Cross sectional survey | DMD boys & families | 27 | Italy | Parent-proxy HRQoL |
Bendixen et al., 2012 [2] | Case-control survey | DMD boys & controls | 50 | US | Self-reported QoL |
Bendixen et al., 2014 [60] | Cross sectional survey | DMD boys by age | 60 | US | Self-reported participation in daily activities |
Bloetzer et al., 2012 [61] | Cross sectional survey | DMD boys | 63 | Switzerland | Parent-proxy sleep disturbances |
Bray et al., 2011 [62] | Cohort survey, 6 month follow up | DMD boys & controls | 34 | Australia | Parent-proxy HRQoL |
Bray et al., 2010 [8] | Cross sectional survey | DMD boys & parents | 35 | Australia | Self-reported & parent-proxy HRQoL |
Cavazza et al., 2016 [56] | Cross sectional survey | Patients or caregiver | 422 | UK & 7 European countries | Self-reported or parent-proxy HRQoL |
Dany et al., 2015 [35] | Tool development | NMD patients | 159 | France | Self-reported HRQoL |
Davison et al., 2011 [28] | Qualitative study | DMD & other NMD adolescents | 13 | UK | Self-reported social well being |
Elsenbruch et al., 2013 [20] | Cross sectional survey | DMD children, adolescents & adults | 50 | Germany | Self-reported HRQoL |
Garralda et al., 2013 [30] | Cohort study | DMD boys | 19 | UK | Emotional impact of gene-modifying trial |
Geers et al., 2011 [55] | Case-control survey | DMD children, adults & matched controls | 36 | Germany | Self-reported HRQoL |
Heutinck et al., 2015 [27] | Case-control survey | DMD boys & healthy controls | 86 | Holland | Physical activity [respondent not reported] |
Houwen et al., 2014 [40] | Cross sectional survey | DMD boys & parents | 40 | Holland | Self-reported & parent-proxy HRQoL |
Hunt et al., 2016 [17] | Cross sectional interviews & survey | DMD boys & adult & parent pairs | 12 | UK | Self-reported & parent-proxy QoL |
Klingels et al., 2016 [31] | Tool development | Systematic review & expert opinion | 194 | Belgium | Activities of daily living |
Landfelt et al., 2016 [37] | Cross sectional multi-national survey | DMD patients & parents & general population reference values from Canada | 770 | UK, Europe & USA | Self-reported & parent-proxy HRQoL |
Landfelt et al., 2016 [32] | Cross sectional survey | Caregivers & general population reference values from Canada | 770 | UK, Europe & USA | Caregiver HRQoL & burden |
Lim et al., 2014 [63] | Cross sectional survey | DMD boys & parents | 63 | US | Self-reported & parent-proxy HRQoL |
Lue et al., 2016 [54] | Cross sectional survey | DMD adolescents & adults | 46 | Taiwan | HRQoL & global QoL [respondent not reported] |
Ly et al., 2013 [21] | Cross sectional survey | DMD adults | 10 | US | Self-reported or proxy social & medical support |
Madsen et al., 2014 [22] | Cross sectional survey | DMD adults | 79 | Denmark | Self-reported QoL |
Magliano et al., 2015 [44] | Cross sectional survey | Relatives of MD patients | 502 | Italy | Caregiver burden |
Magliano et al., 2014 [19] | Case-control survey | DMD parent vs Becker parent | 246 | Italy | Self-reported caregiver burden |
Martinsen et al., 2012 [23] | Cross sectional interview | DMD adults | 16 | Denmark | Self-reported dependence on care |
Mason et al., 2016 [64] | Cross sectional survey | DMD adults | 29 | Australia | Self-reported QoL |
McSweeney et al., 2011 [65] | Cross sectional survey | DMD children | 39 | Ireland | Self- reported & parent-proxy HRQoL |
Messina et al., 2016 [34] | Cohort survey, 12-month follow up | Ambulatory DMD | 98 | Italy | Self-reported & parent-proxy HRQOL |
Nozoe et al., 2014 [66] | Cross sectional survey | Mothers of DMD children & control mothers | 20 | Brazil | Parent sexual function |
Ozyurt et al., 2015 [46] | Case-control study | DMD, parents & controls | 17 | Turkey | Self-reported, parent-proxy QoL & parent anxiety |
Pangalila et al., 2015 [42] | Cross sectional survey | DMD adults | 80 | Holland | Patient HRQoL [respondent not reported] |
Pangalila et al., 2012 [33] | Cross sectional study | Parents of severely disabled DMD adults | 80 | Holland | Subjective caregiver burden |
Peay et al., 2016 [67] | Cohort survey, 2 yr. follow up | Mothers of DMD children | 205 | US | Caregiver burden |
Peay et al., 2013 [26] | Cross sectional survey | Parents of DMD children | 119 | US | Caregiver burden |
Reha et al., 2014 [25] | Cohort survey | DMD patients | 47 | US | Self-reported or parent-proxy QoL |
Riss et al., 2012 [68] | Cross sectional survey | DMD boys | 25 | US | Chart review & parent-proxy QoL |
Simon et al., 2011 [11] | Cohort survey, 1 year | DMD patients | 95 | Brazil | QoL during steroid therapy [respondent not reported] |
Soares et al., 2015 [45] | Cross sectional survey | DMD children & caregivers | 35 | Brazil | Patient QoL Caregiver QoL |
Steffensen et al., 2015 [24] | Cross sectional survey | DMD adults | 183 | UK & 6 European countries | Self-reported HRQoL |
Thomas et al., 2014 [29] | Cross sectional interview | Caregivers | 60 | India | Caregiver burden |
Uzark et al., 2012 [43] | Case-control survey | DMD boys, parents & matched controls | 117 | US | Self-reported & parent-proxy HRQoL |
Wei et al., 2016 [39] | Cross sectional survey | Families of DMD boys | 176 | Canada | Parent-proxy HRQoL |
Wei et al., 2014 [41] | Case-control survey | DMD children | 176 | Canada | Self- report & parent-proxy HRQoL |
Wong et al., 2015 [18] | Audit, interviews & survey | Clinical records & parent survey | 49 | Australia | Parents’ experiences from first noticing symptoms to receiving a diagnosis |
Zamani et al., 2016 [69] | Case-control survey | DMD boys, parents & healthy controls | 85 | Iran | Self-reported & parent-proxy QoL |