. 2017 Mar 16;12(3):e0172937. doi: 10.1371/journal.pone.0172937

Table 1. Summary of included papers.

Reference	Publication year	Health area	Ethics committee approval obtained	Data collection methods	Health Professionals (n)	Patients (n)	Carers and/or representatives (n)
Core outcome set development exercises using qualitative methods with patients, carers and representatives
Allard et al [16]^α	2014	Neurodisability	Not stated	Focus groups	0	50	47
Allard et al [16]^α	2014	Neurodisability	Not stated	Interviews	0	4	6
Janssens [17] et al^α	2014	Neurodisability	Not stated	Delphi	233	0	0
Morris et al [23] et al	2015	Neurodisability	Not stated	Other^Ω	7	3	5
Arnold et al [24]	2008	Fibromyalgia	Yes	Focus groups	0	48	0
Mease et al [25]	2008	Fibromyalgia	Yes	Delphi	23	100	0
Mease et al [26]	2007	Fibromyalgia	Yes	Consensus meeting	Not stated	Not stated	0
Mease et al [27]	2009	Fibromyalgia	Not stated	Consensus conference	Not stated	Not stated	0
Stamm et al [21]^α	2009	Osteoarthritis	Yes	Focus groups	0	56	0
Kloppenburg et al [28]	2014	Osteoarthritis	Not stated	Delphi	31	0	0
Kloppenburg et al [28]	2014	Osteoarthritis	Not stated	Other^Ω	Not stated	Not stated	0
Potter et al [19]^α^π	2013	Breast cancer	Yes	Interviews	35	31	0
Potter et a [20]^α	2014	Breast cancer	Yes	Interviews	35	0	0
Potter et al [29]	2015	Breast cancer	Yes	Delphi	88	215	0
Potter et al [29]	2015	Breast cancer	Yes	Consensus meeting	23	15	0
Sanderson et al [30]	2010a	Rheumatoid arthritis	Yes	Interviews	0	23	0
Sanderson et al [31]	2010b	Rheumatoid arthritis	Yes	Nominal group technique	0	26	0
Sanderson et al [31]	2010b	Rheumatoid arthritis	Yes	Survey	0	254	0
Swigris et al [22]^α	2005	Interstitial lung disease (IPF)	Yes	Interviews	0	5	0
Swigris et al [22]^α	2005	Interstitial lung disease (IPF)	Yes	Focus groups	0	15	0
Saketkoo et al [32]	2014a	Interstitial lung disease (CTD)	Yes	Focus groups	0	45	0
Saketkoo et al [32]	2014a	Interstitial lung disease (CTD)	Yes	Delphi	254	0	0
Saketkoo et al [33]	2014b	Interstitial lung disease (CTD)	Yes	Nominal group technique	23	5	0
Tierney et al [34]	2013	Cleft palate, otitis media	Yes	Interviews	0	0	43
Tierney et al [35]^¥	2015	Cleft palate, otitis media	Yes	Interviews	0	22	43^π
Harman et al [36]	2015	Cleft palate, otitis media	Yes	Survey	0	8	35
				Delphi	104	0	0
				Consensus meeting	11	0	5
				Follow-up workshop	1	0	9
Turk et al [37]	2008	Chronic pain	Yes	Focus groups	0	31	0
Turk et al [37]	2008	Chronic pain	Yes	Survey	0	959	0
Core outcome set development exercises using other methods
Bellm et al [38]	2002	Oral mucositis	Not stated	Other^Ω	9	2	0
Bennett et al [39]	2012	Gestational diabetes mellitus	Not stated	Survey	4	0	2
				Consensus meeting	4	0	2
				Delphi	7	0	2
				Online evaluation	Not stated	0	Not stated
Broder et al [40]	2000	Uterine fibroids	Not stated	Delphi	9	0	1
Broder et al [40]	2000	Uterine fibroids	Not stated	Nominal group technique	10	0	1
Buch et al [41]	2015	Rheumatic diseases	Not stated	Other^Ω	20	2	0
Buch et al [41]	2015	Rheumatic diseases	Not stated	Delphi	20	1	0
Carlson et al [42]	2003	Mania/Bipolar disorder	Not stated	Consensus conference	53	0	Not stated
Chiarotto et al [43]	2015	Lower back pain	Exempt	Delphi	129	14	0
Chitnis et al [44]	2012	Multiple Sclerosis	Not stated	Survey	51	0	Not stated
Chitnis et al [45]	2013	Multiple Sclerosis	Not stated	Consensus meeting	69	0	Not stated
Chitnis et al [45]	2013	Multiple Sclerosis	Not stated	Survey	Not stated	0	0
Devane et al [5]	2007	Maternity care	Yes	Delphi	194	9	15
Gladman et al [46]	2005	Psoriatic arthritis	Not stated	Nominal group technique	Not stated	Not stated	0
Gladman et al [47]	2007	Psoriatic arthritis	Not stated	Consensus meeting	Not stated^*	Not stated^*	0
Goldhahn et al [48]	2014	Distal radius fracture	Not stated	Nominal group technique	Not stated⁰	Not stated⁰	0
Gonzalez et al [49]	2011	Vitiligo	Not stated	Consensus meeting	Not stated	Not stated	0
Eleftheriadou et al [50]	2012	Vitiligo	Yes	Survey	Not stated	Not stated^Ψ	0
Eleftheriadou et al [51]	2015	Vitiligo	Not stated	Delphi	69	32	0
Haeusler et al [52]	2015	Febrile neutropenia	Not stated	Delphi	39	4	0
Haywood et al [53]	2014	Hip fracture	Not stated	Survey	13	1	3
Haywood et al [53]	2014	Hip fracture	Not stated	Nominal group technique	22	0	3
Karas [54]	2015	Acute diarrhoea	Not stated	Delphi	70	0	31
Katona et al [55]	2007	Dementia	Not stated	Consensus conference	33	0	3
Merkies et al [56]	2006	Peripheral neuropathy	Not stated	Consensus conference	22	1	0
Moniz-Cook et al [57]	2008	Dementia care	Not stated	Consensus meeting	Not stated	0	0
				Survey	131	0	5
				Consensus meeting	Not stated	0	0
				Consensus meeting	Not stated	0	0
Reilly et al [58]	2006	Charcot-Marie-Tooth disease type 1A	Not stated	Consensus conference	21	2	0
Salaffi et al [59]	2012	Fibromyalgia	Yes	Delphi	252	86	0
Schmitt et al [60]	2007	Eczema	Not stated	Survey	6	4	2
Schmitt et al [61]	2010	Eczema	Not stated	Consensus conference	Not stated^#	Not stated^#	Not stated^#
Schmitt et al [62]	2011	Eczema	Not stated	Delphi	40	6	0
Schmitt et al [63]	2012	Eczema	Not stated	Nominal group technique	38	5	0
Sinha et al [64]	2012	Asthma	Yes	Delphi	46	0	0
Sinha et al [64]	2012	Asthma	Yes	Survey	0	11	88
Stuart et al [65]	2011	Ovarian cancer	Not stated	Consensus conference	Not stated	0	Not stated
Thigpen et al [66]	2011	Ovarian cancer	Not stated	Consensus conference	Not stated	0	Not stated
Tugwell et al [67]	1993	Rheumatoid arthritis	Not stated	Consensus conference	Not stated	Not stated	Not stated
Tugwell et al [67]	1993	Rheumatoid arthritis	Not stated	Nominal group technique	Not stated	Not stated	Not stated
Kirwan et al [68]	2003	Rheumatoid arthritis	Not stated	Consensus conference	46	11	0
Kirwan et al [69]	2005	Rheumatoid arthritis	Not stated	Consensus conference	160	19	0
Kirwan et al [70]	2007	Rheumatoid arthritis	Not stated	Consensus conference	60	20	0
Van der Heijde et al [71]	1997	Ankylosing spondylitis	Not stated	Other^Ω	Not stated	Not stated	0
Van der Heijde et al [71]	1997	Ankylosing spondylitis	Not stated	Nominal group technique	Not stated	Not stated	0
Vargus-Adams et al [72]	2009	Cerebral palsy	Yes	Delphi	39	21	23
MacKichen et al [18]^α	2015	Chronic pain after total knee replacement	Not stated	Focus groups	18	0	0
Wylde et el [73]	2015	Chronic pain after total knee replacement	Yes	Delphi	39	71	0
Wylde et el [73]	2015	Chronic pain after total knee replacement	Yes	Consensus meeting	Not stated	12	0

*total number of participants = 137, breakdown not provided.

⁰ total number of participants = 26, breakdown not provided.

^#total number of participants = 40, breakdown not provided.

^Ψ total number of participants = 461, breakdown not provided.

^α Papers not in original search, included because they are part of the COS pathway.

^¥ Full details given in Tierney 2013.

^Ω Other = meetings/semi-structured discussions.

Papers in italics have a qualitative component which was carried out prior to the COS exercise and was not specifically designed for the COS work but has fed into it.

Not Stated = participants in stakeholder group implied by numbers not given.

N.B. Papers grouped together are part of the same COS exercise.