Response rates in clinical quality registries and databases that collect patient reported outcome measures: a scoping review.

The Arksey and O’Malley method and Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA-ScR) procedures guided this review [ 14 , 15 ]. The protocol was registered on PROSPERO (CRD42022344678). To identify potential studies, a medical librarian searched two main electronic databases MEDLINE and EMBASE in collaboration with the primary author. Grey literature to identify registry websites and annual reports with the information on PROMs data collection and most recent RRs was also included. In addition, a list of Australian registries collecting PROMs was compiled via the website of the Australian Register of Clinical Registries ( https://www.safetyandquality.gov.au/publications-and-resources/australian-register-clinical-registries ). Journal articles, annual reports and websites discussing registries or databases that collect PROMs data at one or more follow up time points and reporting PROMs RRs were included. Non-English articles, studies that did not use registry or database data and articles not reporting PROMs were excluded. Publications such as tutorials, letters, editorials, conference materials, periodical indices, personal narratives, practice guidelines or media were also excluded. The search strategy was adopted from Wang et al. [ 13 ] and modified to fit the scope of this study. We used Medical Subject Heading (MeSH) keywords and free text search terms. The database records and details of how the literature search was undertaken was maintained at each stage of the review process. The terms were combined by means of Boolean operators and are listed in Additional file 1 . A manual search of grey literature was performed. All searches were performed in August 2022. For each article selected for inclusion, abstracts and full texts were obtained. Reference lists of the included studies and systematic reviews were examined during the initial review. The titles and abstracts of journal articles were screened by two researchers (CM and MC). Both authors then read the full texts of these articles to assess eligibility for final inclusion. Disagreement between the authors regarding eligibility was resolved by consensus amongst the three authors (CM, MC and RR). The inclusion and exclusion criteria were applied once again, and articles meeting the inclusion criteria progressed to the next stage of the review for data extraction. All screening processes were conducted through Endnote X9. In the third phase, two independent researchers (CM and MC) extracted data from the eligible studies into a standardized excel spreadsheet. All discrepancies during the review process were resolved and verified by the lead researcher RR [ 15 ]. Relevant data from the included articles were extracted by CM, MC and RR. Data from grey literature such as registry annual reports and registry websites were also extracted by the same researchers during the data extraction phase. Data extracted from the journal articles, reports and websites included: country, registry name, source of information, condition, year registry was established, year registry started collecting PROMs data, number of patients in the registry, PROMs captured, number of reminders sent, RRs at various follow up time points, and any other relevant information. Methods used to calculate RRs were not explicitly stated in most articles, reports and websites, therefore this information was not included. If relevant information could not be located, an email to the registry contact was sent with a request for the missing information. The extracted data was synthesized according to three steps: (1) analysing the data, (2) reporting the findings, (3) discussing the implications [ 15 ]. PROMs RRs from each registry and database were grouped according to the follow up time points of data collection. Follow up time points were defined as follows - t0: baseline (where available), t1: 0 to 1 year, t2 : 1 to < 2 years, t3 : 2 to < 5 years, t4 : 5 to < 10 years, and t5 : 10 + years. Registries were further grouped into the regions of the world: North and South American, European (excluding Scandinavia), Scandinavian, Oceania (including Australia and New Zealand), Asian and Global (those covering all continents). They were also categorised according to health conditions they captured: Arthroplasty/Reconstruction/joint related procedures, Chronic disease, Cancer, Trauma/Burns/Pain, Spine, Cardiac, Rare disease, Gynaecological, General surgery and device, and Miscellaneous conditions. Change in RRs was calculated by subtracting the final reported RR from baseline or first reported RR and dividing the difference by the total length of follow up time. Registries that reported RR at a single follow up time were excluded from these calculations.

The search strategy yielded 1,767 publications (Fig.  1 ). A further 58 citations including grey literature and websites were identified. After removing duplicates, 1,497 sources remained. Twenty-four internet materials were excluded from the initial article screening process. Titles and abstracts of 1,473 journal articles were screened according to the inclusion criteria. Of those, 306 full text articles were assed for eligibility. The screening of full texts resulted in 117 journal articles. Combined with the 20 reports and 4 websites, a total of 141 sources were used in the data extraction and analysis process. Fig. 1 PRISMA chart PRISMA chart Articles in this review were published between 2008 and 2022. Twelve (8.5%) publications were published in 2022, 31 (21.9%) articles were published in 2021, 28 (19.9%) in 2020, 22 (15.6%) in 2019 and the remaining articles were published between the years 2008 and 2018 (Table  1 ). Table 1 Registry characteristics. Follow up point t0 is the reported baseline time point or time of intervention as specified in the article or report. Follow up point t1 is from 0 to 1 year, follow up point t2 is from 1 to < 2 years, follow up point t3 is from 2 to < 5 years, follow up point t4 is from 5 to < 10 years and follow up point t5 is from 10 + years Source of Information Registry Condition Country Mode of Administration No of reminders RR (%) at follow up points Total follow up (years) Change in RR (%/year) t0 t1 t2 t3 t4 t5 Annual Report (2021) [ 41 ] AOANJRR Arthroplasty Australia Electronic 1 66.7 61.5 NA NA NA NA 0.5 -10.5 Heo et al. (2019) [ 42 ], Churches et al. (2018) [ 43 ] ACORN Arthroplasty Australia Paper, phone 7 86.4 74 NA NA NA NA NA NA Rolfson et al. (2011) [ 44 ] WRHA Joint Replacement Arthroplasty Canada Paper 0 75 NA NA NA NA NA NA NA Annual Report (2020–2021) [ 45 ] VOTOR Arthroplasty Australia Phone NS 85 80 76 NA NA NA 2 -4.5 Annual Report (2022) [ 46 ] Australian & New Zealand Hip Fracture Registry Arthroplasty Australia & New Zealand NA NA NA 53 NA NA NA NA 1 -12 Annual Report 2021–2022 [ 41 ] Sydney Orthopaedic Foot & Ankle Research Institute Clinical Quality Arthroplasty Australia NA NA 78 66 NA NA NA NA 0.33 NA Scholes et al. (2023) [ 47 ] PRULO Arthroplasty Australia NA NA 72 NA NA NA NA NA NA NA Galea et al. (2020) [ 48 ] DHAR Arthroplasty Denmark Electronic 2 70 62 68 68 NA NA 2 -1 Mechlenburg et al. (2020) [ 49 ] DSR Arthroplasty Denmark Electronic, paper NS 93 NA 62 NA NA NA 1 -31 Rolfson et al. (2016) [ 50 ] RIPO Arthroplasty Italy Electronic NS 30 NA 80 NA NA NA 1 50 Rolfson et al. (2016) [ 50 ] LAR Arthroplasty Lithuania Phone 0 100 60 NA NA NA NA 0.5 -80 Most et al. (2022) [ 51 ] LROI Arthroplasty Netherlands Electronic, paper 0 38 50 38 NA NA NA 1 0 Rolfson et al. (2016) [ 50 ], Annual Report (2021) [ 24 ] NZACL Arthroplasty New Zealand Electronic, paper > 1 100 86 80 86 NA NA 2 -7 Rolfson et al. (2016) [ 50 ], Annual Report (2021) [ 52 ] NZJR Arthroplasty New Zealand Paper 0 NA 72.5 NA NA NA NA 0.5 NA Annual Report (2022) [ 53 ] NAR Arthroplasty Norway NS NS 98 NA 80 NA NA NA 1 -18 Bartels et al. (2018) [ 54 ], Kristensen et al. (2017) [ 55 ], Gjertson et al. (2008) [ 56 ], Annual Report (2021) [ 57 ] NHFR Arthroplasty Norway Paper 0 28.2 57 53 NA NA NA 1 24.8 Ulstein et al. (2018 ) [ 58 ], Annual Report (2021) [ 53 ] NKLR Arthroplasty Norway Paper 1 NA NA NA 57.5 52.1 52 10 NA Goh et al. (2021) [ 59 ] Singapore Institutional Joint Registry Arthroplasty Singapore NS NS 100 89 NA 72 NA NA 2 -14 SAR Annual Report (2021) [ 60 ] SAR Arthroplasty Sweden Electronic, paper 1 85.5 NA 82.5 NA NA NA 1 -3 Ulstein et al. (2018) [ 58 ], Annual Report (2019) [ 61 ] Swedish Knee Ligament Register Arthroplasty Sweden Electronic, paper 1 60 NA 55 50 45 40 10 -2 Coster et al. (2020) [ 62 ] Swefoot Arthroplasty Sweden Electronic, Paper 1 75 NA 72 NA NA NA 1 -3 Joelson et al. (2021) [ 63 ] Swespine Arthroplasty Sweden Electronic, Paper NS 94 NA 75 65 NA NA 2 -14.5 Kamrad et al. (2017) [ 64 ] SwedAnkle Arthroplasty Sweden Paper NS NA 55 76 30 NA NA 2 NA Rolfson et al. (2016) [ 50 ], Annual Report (2010) [ 65 ] Geneva Hip Arthroplasty Registry Arthroplasty Switzerland Electronic, paper, phone 2 77 NA 65 NA 76.9 70.8 10 -0.6 Maempel (2018) [ 66 ], Annual Report (2022) [ 67 ] NAHR Arthroplasty UK Electronic, paper, phone 2 96.5 50 40 7.5 NA NA 2 -44.5 Annual Report (2021) [ 68 ] UK National Joint Registry Arthroplasty UK Electronic, paper 0 51.7 35 NA 11% 29.9 NA 5 -4.4 Annual Report (2015) [ 69 ] UK NLR Arthroplasty UK Electronic, paper > 1 61.3 47 42 33 NA NA 2 -14.1 Patel et al. (2015) [ 70 ] CJRR (California) Arthroplasty USA Electronic, paper, phone NS 30.2 10 18.1 NA NA NA 1 -11.9 Randsborg et al. (2022) [ 71 ] HSS ACL Registry Arthroplasty USA NS NS 31 NA NA 31 51.2 NA 7.2 2.8 Lyman (2018) [ 72 ] HSS Joint Replacement Registry Arthroplasty USA Electronic NS 80 NA NA 81 NA NA 2 0.5 Annual Report (2021) [ 73 ] AJRR Arthroplasty USA Electronic, paper NS 25 NA 27.8 NA NA NA 1 2.8 Rolfson et al. (2016) [ 50 ] FORCE TJR Arthroplasty USA NS NS 82.5 82.5 NA NA NA NA 0.5 0 Rolfson et al. (2016) [ 50 ] Michigan Arthroplasty Registry Arthroplasty USA NS NS 32 12 NA NA NA NA 1 -20 Annual Report (2020) [ 74 ] PCOR-ANZ Cancer Australia Electronic, paper, phone NS 57 NA 57% NA NA NA 1 0 Rechtman et al. (2022) [ 29 ], Annual Report (2020) [ 74 ] PCOR-VIC Cancer Australia Electronic, paper, phone > 1 98.5 NA 75 75 NA NA 2 -11.8 Annual Report (2020) [ 74 ] PCOR-QLD Cancer Australia Paper NS NA 49 NA NA NA NA 1 NA Annual Report (2020) [ 74 ] PCOR-ACT Cancer Australia Electronic, paper, phone NS NA 62 NA NA NA NA 1 NA Annual Report (2020) [ 74 ] PCOR-NSW Cancer Australia Electronic, paper, phone NS NA 48 NA NA NA NA 1 NA Annual Report (2020) [ 74 ] PCOR-NT Cancer Australia Paper NS NA 39 NA NA NA NA 1 NA Annual Report (2020) [ 74 ] PCOR-NZ Cancer Australia Electronic, paper NS NA 68 NA NA NA NA 1 NA Annual Report (2020) [ 74 ] PCOR-SA Cancer Australia Paper NS NA 33 NA NA NA NA 1 NA Annual Report (2020) [ 74 ] PCOR-TAS Cancer Australia Electronic, paper, phone NS NA 44 NA NA NA NA 1 NA Ettridge et al. (2021) [ 75 ] SAPCCOC Registry Cancer Australia Paper NS NA 75 60 57 NA NA 2 NA Skandarajah et al. (2021) [ 76 ] VCR Cancer Australia Paper 1 45.6 NA 47.3 48.1 41.5 NA 5 -0.8 Sztankay et al. (2019) [ 27 ] aMYELOIDr Cancer Austria Electronic NS 99 94 NA NA NA NA NA NA Vasquez et al. (2020) [ 77 ] APCaRI Registry & Biorepository Cancer Canada Electronic, paper NS 77 NA NA NA NA NA NA NA Joachim et al. (2018) [ 78 ] MCR Cancer Caribbean Electronic, paper 1 85 NA NS NS 70 NA 5 NA Rose et al. (2020) [ 79 ] DBCG Registry Cancer Denmark Electronic 1 60 NA NA NA 48.3 NA 5 -2.3 Bronserud et al. (2019) [ 80 ] DLCR Cancer Denmark Electronic, paper 2 NA 50.4 48.9 NA NA NA 1 NA Nguyen-Nielsen et al. (2016) [ 81 ] DAPROCAdata Cancer Denmark Electronic, paper NS 26 NA 92 NA NA NA 1 66 Wallwiener et al. (2017) [ 82 ] PRAEGNANT Register Cancer Germany Electronic 0 57 33 NA NA NA NA 0.5 0 Lovegrove et al. (2020) [ 83 ] HEAT Registry Cancer Global Electronic NS 72.6 25.4 NA NA NA NA NA NA Gupta et al. (2021) [ 84 ] PanCAN Cancer Global Electronic NS 77.6 NA 75 NA NA NA 1 -2.6 Van Kleef et al. (2021) [ 85 ] NCR Cancer Netherlands Electronic, paper 0 85 14.8 NA NA NA NA 0.02 [Outlier] Ramsey et al. (2019) [ 86 ] PROFILES Registry Cancer Netherlands Electronic, paper 1 73 NA 83 81.3 NA NA 4 2 Christiansen et al. (2019) [ 87 ] CRN Cancer Norway Electronic 1 97 91 NA NA NA NA 0.3 -24 Amit et al. (2019) [ 88 ] Oropharynx Cancer Registry PROF Core Cancer USA Paper 1 84 NA NA NA NA NA NA NA Hoffman et al. (2020) [ 23 ] CaPSURE Cancer USA Paper NS 100 97 94 85 77 NA 5 -4.6 Barker et al. (2018) [ 89 ], Annual Report (2020) [ 90 ] VCOR Cardiac Australia Electronic, phone 2 NA 72 NA NA NA NA 0.08 NA Ikemura et al. (2019) [ 25 ] KiCS-AF registry (Cohort Study) Cardiac Japan Electronic, paper NS 97 NA 91.7 NA NA NA 1 -5.3 Steingerg et al. (2020) [ 91 ], Piccini et al. (2011 ) [ 28 ] ORBIT-AF Cardiac USA Electronic NS 94 80 67 NA NA NA 1 -27 Bradley et al. (2019) [ 92 ] PALM Registry Cardiac USA Electronic 0 93 NA NA NA NA NA NA NA Arnold et al. (2022) [ 93 ] STS, ACC & TVT Registry Cardiac USA NS NS 25 25 NA NA NA NA 0.08 0 Annual report (2020–2021) [ 94 ] VACAR Cardiac Australia Phone 3 NA 85 NA NA NA NA 1 NA Alarcon et al. (2020) [ 22 ] COREXH Registry Chronic Disease Columbia Paper NS 99 81 64 NA NA NA 1 -35 Apfelbacher et al. (2019) [ 95 ] CARPE Chronic Disease Germany Electronic, paper NS NA 87 69 49 22 NA NA NA Kreuter et al. (2017) [ 96 ] INSIGHTS-IPF Registry Chronic Disease Germany Electronic NS 84.5 84.5 NA NA NA NA 1 NA Younossi et al. (2021) [ 97 ], Hardy (2020) [ 98 ] Global NASH & NAFLD Registry Chronic Disease Global Electronic NS 50 NA 14 NA NA NA 0.3 -96 Ahmed et al. (2015) [ 99 ] CARE Chronic Disease Netherlands Electronic, paper 1 90 85 NA 82 NA NA 2 -4 Verket et al. (2018) [ 100 ] ORAR Chronic Disease Norway Paper 0 71 NA NA 75 59 61 15 -0.7 Nimmo et al. (2018) [ 9 ] SRR Chronic Disease Scotland Paper 0 NA 44 NA NA NA NA NA NA Mellgren et al. (2020) [ 101 ] InfCareHiv Chronic Disease Sweden Electronic, paper 0 NA NA 44 NA NA NA 1 NA Svedbo (2018) [ 102 ] Swedish NDR Chronic Disease Sweden Paper 1 NA 61 NA NA NA NA NA NA Hejike et al. (2020) [ 103 ], Hejike et al. (2021) [ 104 ] KLURING Chronic Disease Sweden NS NS 100 76 90 72 49 NA 5 -10.2 Hofstedt et al. (2019) [ 105 ] SRQ Chronic Disease Sweden Electronic, paper 0 NA 88 NA NA NA NA NA NA Twigg et al. (2017) [ 106 ] YEAR Chronic Disease UK Paper NS 92 74 74 NA NA NA 1 -18.5 Callis Duffin et al. (2021) [ 107 ], Mease et al. (2017) [ 108 ], Strober et al. (2019) [ 109 ] Corrona PsA, SpA Registry Chronic Disease USA Paper NS NA 99 NA NA NA NA NA NA Yun et al. (2020) [ 110 ] Arthritis Power Registry Chronic Disease USA Electronic NS NA 33 NA NA NA NA NA NA Case et al. (2020) [ 111 ] IPF-PRO Registry Chronic Disease USA NS NS 76 NA NA NA NA NA NA NA Braaten et al. (2019) [ 112 ] UPI Arthritis Registry Chronic Disease USA NS NS NA 58 NA NA NA NA NA NA Feldon et al. (2017) [ 113 ] MYOVISION Chronic Disease USA & Canada Electronic, paper, phone 1 91 NA NA NA NA NA NA NA Zimmerman et al. (2019) [ 114 ] Swedish National Quality Registry for Hand Surgery General Surgery Sweden Electronic, paper 0 33 27 24 NA NA NA 1 -9 Hallenstal et al. (2021) [ 115 ] NTSRS General Surgery Sweden Electronic 0 NA 44 NA NA NA NA 0.5 NA Alvarez et al. (2021) [ 116 ], Waljee et al. (2015) [ 117 ] MBSC General Surgery USA Electronic 3 36 36 NA NA NA NA 1 0 Helsten et al. (2016) [ 118 ] SATISFY-SOS Registry General Surgery USA Electronic, paper, phone 2 NA 62 71 NA NA NA 1 NA Verket et al. (2018) [ 100 ] Norwegian Endometriosis Association Gynaecological Surgery Norway Paper 0 NA 25 25 NA NA NA NA NA Annual Report 2021 [ 119 ] ABDR General Surgery Australia NS NS NA 40 40 38 NA NA 5 -0.2 Melkemichel (2020) [ 120 ], Lundstrom et al. (2018) [ 121 ], Jakobsson et al. (2022) [ 122 ] SHR Gynaecological Surgery Sweden Paper 1 NA NA 71 NA NA NA 1 NA Madsen et al. (2017) [ 123 ], Nussler et al. (2022) [ 124 ] GynOp Gynaecological Surgery Sweden Paper 0 NA 90 85 NA NA NA 1 NA Bradley et al. (2021) [ 125 ] PFDR-R Gynaecological Surgery USA Electronic, paper NS 49 NA NA NA NA NA NA NA Poulsen et al. (2018) [ 126 ] National Patient Register Miscellaneous Denmark Paper 1 NA 79 NA NA NA NA NA NA Wall et al. (2020) [ 127 ], Vuillermin (2021) [ 128 ] CoULD Registry Miscellaneous Global Electronic 0 NA 97 NA NA NA NA NA NA Ruiter et al. (2021) [ 129 ] Dutch-Belgian Registry for NMJ Disorders Miscellaneous Netherlands & Belgium Electronic 0 88 49 NA NA NA NA NA NA Moller et al. (2022) [ 130 ], Lagergren et al. (2020) [ 131 ], Juto et al. (2017) [ 132 ] SFR Miscellaneous Sweden Paper 1 55 NA 41 NA NA NA 1 -14 Lutz et al. (2020) [ 133 ] ATI Patient Outcomes Registry Miscellaneous USA NS NS 54 NA NA NA NA NA NA NA Pearl et al. (2020) [ 21 ] ARMR Miscellaneous USA Paper 0 99.5 NA NA NA NA NA NA NA Annual Report (2020–2021) [ 134 ] ADNeT Miscellaneous Australia Paper 1 53 NA NA NA NA NA NA NA Seefried et al. (2020) [ 20 ] Global HPP Registry Rare disease Global Electronic NS 68 NA NA NA NA NA NA NA Morris et al. (2018) [ 19 ] FSHD Patient Registry Rare disease UK Electronic 1 NA 89 NA NA NA NA NA NA Tosi et al. (2019) [ 16 ] BBDC Contact Registry Rare disease USA Electronic NS NA 87 NA NA NA NA NA NA Eng et al. (2021) [ 18 ] EBCare Registry Rare disease USA Electronic 0 19.5 NA NA NA NA NA NA NA Annual Report (2022) [ 135 ] ASR Spine Australia Electronic, phone 3 85 82 83 78 NA NA 2 -3.5 Andersen et al. (2018) [ 136 ] DaneSpine Spine Denmark Paper 1 90 NA 86 NA NA NA 1 -4.5 Matsumoto et al. (2021) [ 137 ] PSSG & GSSG Spine Global Electronic, paper 0 42 NA 43 64.9 NA NA 2 11.5 Mannion et al. (2018) [ 138 ], Morris et al. (2018) [ 19 ], Sunderland et al. (2021) [ 139 ] EUROSPINE Spine Tango Registry Spine Global Electronic, paper 1 49 66 73.3 54 NA NA 2 2.5 Austevoll et al. (2019) [ 140 ] NORspine Spine Norway Paper 0 NA 79 81 NA NA NA 1 NA Zakaria et al. (2019) [ 141 ] MSSIC Spine USA Electronic, paper, phone 2 72 55 49 NA NA NA 1 -23 Theisen et al. (2020) [ 142 ] NBRG SCI Registry Spine USA NS NS 92 NA NA NA NA NA NA NA Wilkerson et al. (2022) [ 143 ] NeuroPoint QOD Spine USA NS NS 67 82 70 NA NA NA 1 2.6 Annual Report (2020) [ 144 ] AuSCR Stroke Australia Paper, phone 2 92 65 NA NA NA NA 0.5 -54 Palmcrantz et al. (2018) [ 145 ] RisStroke Stroke Sweden Paper, phone 0 NA 81 79 NA NA NA 1 NA Turner et al. (2019) [ 146 ], Annual Report (2020–2021) [ 147 ] BRANZ Trauma ANZ Paper, phone 4 71 55 40 21 NA NA 2 -25 Turner et al. (2019) [ 146 ] VSTR Trauma Australia Phone NS NA 87 88 86 NA NA 2 NA Stamer et al. (2021) [ 148 ], Zaslansky et al. (2015) [ 149 ] PAIN OUT Infant Trauma Global Electronic NS 20.6 NA NA NA NA NA NA NA Van der Vliet et al. (2019) [ 150 ] DNTR Trauma Netherlands Paper, phone 2 NA 75 98 NA NA NA 1 23 Wihlke et al. (2021) [ 151 ] SweTrau Trauma Sweden Paper, phone 1 NA 78 68 NA NA NA 1 NA Kallman et al. (2020) [ 26 ] SQRP Trauma Sweden Electronic, paper NS 99 86 55 NA NA NA 1 -44 Turner et al. (2019) [ 146 ] TARN Trauma UK Paper NS 61 88 NA NA NA NA NA NA Rolfson et al. (2011) [ 44 ] CERTs Registry Trauma USA NS NS 80 NA NA NA NA NA NA NA Turner et al. (2019) [ 146 ], Rios-Diaz et al. (2017) [ 152 ] FORTE project Trauma USA Phone NS NA 45 42 NA NA NA 1 NA Amtman et al. (2017) [ 153 ] NIDILRR BMS National Database Trauma USA Electronic, paper, phone NS 82 72 63 54 NA NA 2 -14 ABDR: The Australian Breast Device Registry, ACC: American College of Cardiology, ACL: Anterior Cruciate Ligament, ACORN: Arthroplasty Clinical Outcomes Registry, National,ADNet: Australian Dementia Network Registry, AJRR: American Joint Replacement Registry, aMYELOIDr: Austrian Myelome Registry, AOANJRR: Australian Orthopaedic Association National Joint Replacement Registry, APCaRI: Alberta Prostate Cancer Research Initiative, ARMR: American Registry for Migraine Research ASR: Australian Spine Registry, AuSCR: Australian Stroke Registry, BBDC: Brittle Bone Disorders Consortium, BMS: Burn Model System, BRANZ: The Burns Registry of Australia and New Zealand, CaPSURE: Prostate Strategic Urologic Research Endeavor prostate cancer registry, CARE: Dutch Chronic Pancreatitis Registry, CERTs: Centre for Education and Research on Therapeutics, COREXH: Expanded Haemodialysis Registry Protocol in Colombia, CoULD: The Congenital Upper Limb Difference, CRN: Cancer Registry in Norway, DaneSpine: Danish National Spine Database, DAPROCA data: Danish Prostate Cancer Database, DBCG: Danish Breast Cancer Cooperative Group, DHAR: Danish Hip Arthroplasty Registry, DLCR: Danish Lung Cancer Registry, DNTR: Dutch National Trauma Registry, EB: Epidermolysis Bullosa, DSR: Danish Shoulder Arthroplasty Registry; FORTE: Functional Outcomes and Recovery after Trauma Emergencies, FSHD: Facioscapulohumeral Dystrophy, GSSG: Growing Spine Study Group, GynOp: Swedish National Quality Register of Gynaecological Surgery, Heat: High Intensity Focused Ultrasound Evaluation and Assessment of Treatment, HPP: Hypophosphatasia, HSS: Hospital for Special Surgery, HSS: Hospital for Special Surgery, IPF-PRO: The Idiopathic Pulmonary Fibrosis Prospective Outcomes, KiCS- AF: Keio Interhospital Cardiovascular Studies-atrial fibrillation, KLURING: Clinical Lupus Register in North-Eastern Gothia, Sweden, LAR: Lithuanian Arthroplasty Registry, LROI: Dutch Arthroplasty Register, MBSC: Michigan Bariatric Surgery Collaborative, MCR: Martinique Cancer Registry, MSSIC: Michigan Spine Surgery Improvement Collaborative, NAFLD: Non-Alcoholic Fatty Liver Disease, NAHR: British Non-Arthroplasty Hip Register, NAR: Norwegian Arthroplasty Register, NASH: Non-Alcoholic Steatohepatitis, NBRG: Neurogenic Bladder Research Group, NCR: Netherlands Cancer Registry, NDR: National Diabetes Register, NHFR: Norwegian Hip Fracture Register, NIDILRR: National Institute on Disability, Independent Living, and Rehabilitation Research, NJM: Neuromuscular Junction, NKLR: Norwegian Knee Ligament Register, NLR: National Ligament Register, NORspine: Norwegian National Spine Registry, NTSRS: National Tonsil Surgery Register in Sweden, NZACL: New Zealand Anterior Cruciate Ligament Registry, NZJR: New Zealand Joint Registry, ORAR: Oslo Rheumatoid Arthritis Register, ORBIT-AF: Outcomes Registry for Better Informed Treatment of Atrial Fibrillation, PALM: Patient and Provider Assessment of Lipid Management, PanCAN: The Pancreatic Cancer Action Network, PCOR ACT: Prostate Cancer Outcomes Registry - Australian Capital Territory, PCOR-ANZ: Prostate Cancer Outcomes Registry - Australia and New Zealand, PCOR- NSW: Prostate Cancer Outcomes Registry – New South Wales, PCOR- NT: Prostate Cancer Outcomes Registry – Northern Territory, PCOR NZ: Prostate Cancer Outcomes Registry New Zealand, PCOR- QLD: Prostate Cancer Outcomes Registry - Queensland, PCOR SA: Prostate Cancer Outcomes Registry South Australia, PCOR TAS: Prostate Cancer Outcomes Registry - Tasmania, PCOR-VIC: Prostate Cancer Outcomes Registry Victoria, PFD-R: American Urogynecology Society’s Pelvic Floor Disorder Registry for Research, PROF: Patient Reported Outcomes and Function, PROF: Patient Reported Outcomes and Function, PsA: Psoriatic Arthritis, PSSG: Paediatric Spine Study Group, PRULO; Patient Registry of Upper Limb pathology Outcome, QOD: Quality Outcomes Database, RIPO: Register of the Orthopaedic Prosthetic Implants, RisStroke: Swedish National Stroke Register, SAPCCOC: South Australian Prostate Cancer Clinical Outcomes Collaborative, SAR: Swedish Arthroplasty Registry, SATISFY-SOS: Systematic Assessment and Targeted Improvement of Services Following Yearlong Surgical Outcomes Survey, SCI: Spinal Cord Injury, SFR: Swedish Fracture Register, SHR: Swedish Hernia Register, SpA: Spondyloarthritis, SQR: Swedish Rheumatology Quality Register, SQRP: Swedish Quality Registry for Pain Rehabilitation, SRR: Scottish Renal Registry, STS: Society of Thoracic Surgeons, SwedAnkle: The Swedish Ankle Registry, Swespine: Swedish National Spine Register, SweTrau: Swedish Trauma Register, TARN: Trauma Audit and Research Network, TVT :Transcatheter Valve Therapy, UK: United Kingdom, UPI: Utah Psoriasis Initiative, VACAR; Victorian Ambulance Cardiac Arrest Registry, VCOR: Victorian Cardiac Outcomes Registry, VCR: Victorian Cancer Registry, VOTOR: Victorian Orthopaedic Trauma Outcomes Registry, VSTR: Victorian State Trauma Registry, WRHA: Winnipeg Regional Health Authority, YEAR: Yorkshire Early Arthritis Register Registry characteristics. Follow up point t0 is the reported baseline time point or time of intervention as specified in the article or report. Follow up point t1 is from 0 to 1 year, follow up point t2 is from 1 to < 2 years, follow up point t3 is from 2 to < 5 years, follow up point t4 is from 5 to < 10 years and follow up point t5 is from 10 + years Heo et al. (2019) [ 42 ], Churches et al. (2018) [ 43 ] Rolfson et al. (2016) [ 50 ], Annual Report (2021) [ 24 ] Rolfson et al. (2016) [ 50 ], Annual Report (2021) [ 52 ] Bartels et al. (2018) [ 54 ], Kristensen et al. (2017) [ 55 ], Gjertson et al. (2008) [ 56 ], Annual Report (2021) [ 57 ] Ulstein et al. (2018 ) [ 58 ], Annual Report (2021) [ 53 ] Maempel (2018) [ 66 ], Annual Report (2022) [ 67 ] Barker et al. (2018) [ 89 ], Annual Report (2020) [ 90 ] Turner et al. (2019) [ 146 ], Annual Report (2020–2021) [ 147 ] ABDR: The Australian Breast Device Registry, ACC: American College of Cardiology, ACL: Anterior Cruciate Ligament, ACORN: Arthroplasty Clinical Outcomes Registry, National,ADNet: Australian Dementia Network Registry, AJRR: American Joint Replacement Registry, aMYELOIDr: Austrian Myelome Registry, AOANJRR: Australian Orthopaedic Association National Joint Replacement Registry, APCaRI: Alberta Prostate Cancer Research Initiative, ARMR: American Registry for Migraine Research ASR: Australian Spine Registry, AuSCR: Australian Stroke Registry, BBDC: Brittle Bone Disorders Consortium, BMS: Burn Model System, BRANZ: The Burns Registry of Australia and New Zealand, CaPSURE: Prostate Strategic Urologic Research Endeavor prostate cancer registry, CARE: Dutch Chronic Pancreatitis Registry, CERTs: Centre for Education and Research on Therapeutics, COREXH: Expanded Haemodialysis Registry Protocol in Colombia, CoULD: The Congenital Upper Limb Difference, CRN: Cancer Registry in Norway, DaneSpine: Danish National Spine Database, DAPROCA data: Danish Prostate Cancer Database, DBCG: Danish Breast Cancer Cooperative Group, DHAR: Danish Hip Arthroplasty Registry, DLCR: Danish Lung Cancer Registry, DNTR: Dutch National Trauma Registry, EB: Epidermolysis Bullosa, DSR: Danish Shoulder Arthroplasty Registry; FORTE: Functional Outcomes and Recovery after Trauma Emergencies, FSHD: Facioscapulohumeral Dystrophy, GSSG: Growing Spine Study Group, GynOp: Swedish National Quality Register of Gynaecological Surgery, Heat: High Intensity Focused Ultrasound Evaluation and Assessment of Treatment, HPP: Hypophosphatasia, HSS: Hospital for Special Surgery, HSS: Hospital for Special Surgery, IPF-PRO: The Idiopathic Pulmonary Fibrosis Prospective Outcomes, KiCS- AF: Keio Interhospital Cardiovascular Studies-atrial fibrillation, KLURING: Clinical Lupus Register in North-Eastern Gothia, Sweden, LAR: Lithuanian Arthroplasty Registry, LROI: Dutch Arthroplasty Register, MBSC: Michigan Bariatric Surgery Collaborative, MCR: Martinique Cancer Registry, MSSIC: Michigan Spine Surgery Improvement Collaborative, NAFLD: Non-Alcoholic Fatty Liver Disease, NAHR: British Non-Arthroplasty Hip Register, NAR: Norwegian Arthroplasty Register, NASH: Non-Alcoholic Steatohepatitis, NBRG: Neurogenic Bladder Research Group, NCR: Netherlands Cancer Registry, NDR: National Diabetes Register, NHFR: Norwegian Hip Fracture Register, NIDILRR: National Institute on Disability, Independent Living, and Rehabilitation Research, NJM: Neuromuscular Junction, NKLR: Norwegian Knee Ligament Register, NLR: National Ligament Register, NORspine: Norwegian National Spine Registry, NTSRS: National Tonsil Surgery Register in Sweden, NZACL: New Zealand Anterior Cruciate Ligament Registry, NZJR: New Zealand Joint Registry, ORAR: Oslo Rheumatoid Arthritis Register, ORBIT-AF: Outcomes Registry for Better Informed Treatment of Atrial Fibrillation, PALM: Patient and Provider Assessment of Lipid Management, PanCAN: The Pancreatic Cancer Action Network, PCOR ACT: Prostate Cancer Outcomes Registry - Australian Capital Territory, PCOR-ANZ: Prostate Cancer Outcomes Registry - Australia and New Zealand, PCOR- NSW: Prostate Cancer Outcomes Registry – New South Wales, PCOR- NT: Prostate Cancer Outcomes Registry – Northern Territory, PCOR NZ: Prostate Cancer Outcomes Registry New Zealand, PCOR- QLD: Prostate Cancer Outcomes Registry - Queensland, PCOR SA: Prostate Cancer Outcomes Registry South Australia, PCOR TAS: Prostate Cancer Outcomes Registry - Tasmania, PCOR-VIC: Prostate Cancer Outcomes Registry Victoria, PFD-R: American Urogynecology Society’s Pelvic Floor Disorder Registry for Research, PROF: Patient Reported Outcomes and Function, PROF: Patient Reported Outcomes and Function, PsA: Psoriatic Arthritis, PSSG: Paediatric Spine Study Group, PRULO; Patient Registry of Upper Limb pathology Outcome, QOD: Quality Outcomes Database, RIPO: Register of the Orthopaedic Prosthetic Implants, RisStroke: Swedish National Stroke Register, SAPCCOC: South Australian Prostate Cancer Clinical Outcomes Collaborative, SAR: Swedish Arthroplasty Registry, SATISFY-SOS: Systematic Assessment and Targeted Improvement of Services Following Yearlong Surgical Outcomes Survey, SCI: Spinal Cord Injury, SFR: Swedish Fracture Register, SHR: Swedish Hernia Register, SpA: Spondyloarthritis, SQR: Swedish Rheumatology Quality Register, SQRP: Swedish Quality Registry for Pain Rehabilitation, SRR: Scottish Renal Registry, STS: Society of Thoracic Surgeons, SwedAnkle: The Swedish Ankle Registry, Swespine: Swedish National Spine Register, SweTrau: Swedish Trauma Register, TARN: Trauma Audit and Research Network, TVT :Transcatheter Valve Therapy, UK: United Kingdom, UPI: Utah Psoriasis Initiative, VACAR; Victorian Ambulance Cardiac Arrest Registry, VCOR: Victorian Cardiac Outcomes Registry, VCR: Victorian Cancer Registry, VOTOR: Victorian Orthopaedic Trauma Outcomes Registry, VSTR: Victorian State Trauma Registry, WRHA: Winnipeg Regional Health Authority, YEAR: Yorkshire Early Arthritis Register Following the data extraction, 121 registries were identified and included for evaluation of RRs. Of the 121 registries, 33 (27%) were located in North and South America. Thirty-one (26%) registries originated from Scandinavia and 20 (17%) were based elsewhere in Europe. Twenty-three (19%) registries were located in Australia and New Zealand. The remaining eight (7%) registries were classified as global. Arthroplasty/Reconstruction/Joint related procedure registries (27%) were most frequently reported in the literature. Cancer registries accounted for 21%, followed by 16%for chronic disease registries. Twenty-five (21%) registries exclusively collected PROMs electronically (Table  1 ). Twenty-eight (23%) registries captured PROMs on paper. Forty-seven (39%) registries used a combination method for collecting PROMs, and only three (4%) exclusively phoned their patients to capture PROMs. Information on PROMs reminders was available for 63 (52%) registries. Twenty-four (20%) registries did not send any reminders, 22 (18%) sent one reminder while 17 (14%) registries sent more than one reminder. The vast majority (76%) of registries captured PROMs data at baseline (Table  2 ). In North and South America, baseline PROMs were captured by 27 (82%) registries, followed by 24 (77%) in Scandinavia, 18 (90%) in other European countries and 14 (61%) registries in Oceania. PROMs at < 1 year follow up were captured by 14 (42%) North and South American registries, 13 (42%) Scandinavian and 13 (65%) for both European and Oceania registries. Similarly, 21 (68%) Scandinavian registries, 17 (54%) North and South American registries, 17 (74%) Oceania and 6 (30%) European registries captured PROMs at 1 to < 2 years follow up. These numbers decreased with follow up years. Table 2 Number and proportion of registries collecting PROMs at various follow up time points stratified by region and condition. Follow up point t0 is the reported baseline time point or time of intervention as specified in the article or report. Follow up point t1 is from 0 to 1 year, follow up point t2 is from 1 to < 2 years, follow up point t3 is from 2 to < 5 years, follow up point t4 is from 5 to < 10 years and follow up point t5 is from 10 + years Registry type Follow up points t0 t1 t2 t3 t4 t5 All registries (n = 121) 92 (76%) 57(47%) 69 (57%) 33 (27%) 12 (10%) 2 (2%) By region North & South America (33) 27 (82%) 14 (42%) 17 (54%) 7 (21%) 2 (6%) NA Scandinavia (31) 24 (77%) 13 (42%) 21 (68%) 8 (26%) 6 (19%) 1 (3%) Europe (excluding Scandinavia) (20) 18 (90%) 13 (65%) 9 (45%) 6 (30%) 2 (10%) 1 (5%) Oceania (27) 14 (61%) 13(57%) 17 (74%) 9 (39%) 2 (7%) NA Global (8) 7 (88%) 3 (38%) 4 (50%) 2 (25%) NA NA Asia (2) 2 (100%) 1 (50%) 1 (50%) 1 (50%) NA NA By condition Arthroplasty/Reconstruction/Joint related registries (33) 29 (88%) 18 (55%) 21 (64%) 13 (40%) 7 (21%) 1 (3%) Cancer registries (25) 18 (72%) 8 (32%) 17 (68%) 6 (24%) 3 (12%) NA Chronic disease registries (19) 14 (74%) 8 (42%) 8 (42%) NA 1 (6%) 1 (6%) Trauma/Burns/Pain registries (10) 6 (60%) 9 (90%) 6 (60%) 4 (40%) NA NA Spine registries (8) 7 (88%) 5 (50%) 7 (88%) 3 (38%) NA NA Miscellaneous registries (7) 7 (100%) 1 (14%) 1 (14%) 4 (50%) NA NA Cardiac registries (6) 3 (50%) 3 (50%) 3 (50%) NA NA NA General surgery and device registries (5) 3 (60%) 3 (60%) 4 (80%) 3 (60%) 1 (20%) NA Rare disease registries (4) 2 (50%) 1 (25%) NA NA NA NA Gynaecological registries (4) 3 (75%) 1 (25%) 2 (50%) NA NA NA Number and proportion of registries collecting PROMs at various follow up time points stratified by region and condition. Follow up point t0 is the reported baseline time point or time of intervention as specified in the article or report. Follow up point t1 is from 0 to 1 year, follow up point t2 is from 1 to < 2 years, follow up point t3 is from 2 to < 5 years, follow up point t4 is from 5 to < 10 years and follow up point t5 is from 10 + years When grouping the registries by health conditions, 29 (88%) Arthroplasty/Reconstruction/Joint related procedure registries captured PROMs at baseline followed by 18 (72%) Cancer registries. Eighteen (55%) Arthroplasty/Reconstruction/Joint related procedure registries collected PROMs at < 1 year follow up, followed by 9 (90%) Trauma/Burns/Pain, 8 (32%) Cancer and 8 (42%) Chronic disease registries. The overall mean and standard deviation (SD) RR of registries capturing PROMs started at 71% (24.0) at baseline and decreased to 56% (13.2) at 10 + years follow up period (Table  3 ). Table 3 Average response rates (in %) with SD for time periods stratified by region, condition, modes and methods of administration and number of reminders sent. Follow up point t0 is the reported baseline time point or time of intervention as specified in the article or report. Follow up point t1 is from 0 to 1 year, follow up point t2 is from 1 to < 2 years, follow up point t3 is from 2 to < 5 years, follow up point t4 is from 5 to < 10 years and follow up point t5 is from 10 + years Follow up points t0 t1 t2 t3 t4 t5 All registries (n = 121) 71 ± 24 65 ± 23 62 ± 20.5 59 ± 23.2 53 ± 15 56 ± 13.2 By region North & South America (33) 68 ± 26.7 60 ± 28.7 57 ± 22.5 63 ± 25.3 66 ± 13.3 N/A Scandinavia (31) 73 ± 25.4 66 ± 21.0 66 ± 19.5 61 ± 16.4 51 ± 5.1 51 ± 10.7 Europe (excluding Scandinavia) (20) 74 ± 21.9 62 ± 24.0 65 ± 21.3 44 ± 32.9 53 ± 33.2 71 ± N/A Oceania (27) 75 ± 17.8 72 ± 11.4 60 ± 18.2 63 ± 22.7 40 ± 2.5 N/A Global (8) 54 ± 20.0 63 ± 35.9 51 ± 28.9 59 ± 7.7 N/A N/A Asia (2) 99 ± 2.1 89 ± N/A 92 ± N/A 72 ± N/A N/A N/A By condition Arthroplasty/Reconstruction/Joint related registries (33) 68 ± 25.5 58 ± 22.3 61 ± 20.1 52 ± 27.6 51 ± 17.0 54 ± 15.5 Cancer registries (25) 75 ± 21.1 60 ± 33.3 61 ± 18.4 69 ± 16.0 59 ± 17.0 N/A Chronic disease registries (19) 85 ± 15.1 73 ± 18.3 62 ± 25.4 70 ± 14.1 54 ± 6.9 61 ± N/A Trauma/Burns/Pain registries (10) 69 ± 26.7 73 ± 15.6 65 ± 21.9 54 ± 32.3 N/A N/A Spine registries (8) 71 ± 19.8 73 ± 11.9 69 ± 16.9 66 ± 12 N/A N/A Miscellaneous registries (7) 70 ± 22.2 75 ± 24.2 41 ± N/A N/A N/A N/A Cardiac registries (6) 77 ± 34.9 59 ± 29.7 81 ± 12.8 N/A N/A N/A General surgery and device registries (5) 35 ± 2.1 42 ± 14.9 45 ± 24.0 40 ± N/A 38 ± N/A N/A Rare diseases registries (4) 44 ± 34.3 88 ± 1.3 N/A N/A N/A N/A Gynaecological registries (4) 49 ± N/A 58 ± 46.0 60 ± 31.3 N/A N/A N/A Mode of administration Electronic (25) 63 ± 25.7 59 ± 27.7 61 ± 26.7 50 ± 26.2 50 ± 2.1 NA Paper (28) 73 ± 23.5 72 ± 20.3 61 ± 20.0 59 ± 19.4 57 ± 14.9 57 ± 6.6 Phone (5) 100 ± NA 69 ± 21.3 74 ± 32.2 81 ± NA NA NA Mixed (47) 71 ± 23.6 85 ± 22.6 61 ± 20.7 54 ± 27.0 55 ± 21.9 55 ± 21.8 Number of reminders sent 0 (24) 63 ± 28.0 56 ± 25.2 52 ± 23.7 50 ± 34.2 44 ± 20.2 61 ± NA 1 (22) 72 ± 17.0 76 ± 12.1 68 ± 15.3 65 ± 15.9 51 ± 11.1 46 ± 8.5 > 1 (17) 79 ± 18.5 62 ± 14.4 65 ± 19.3 53 ± 31.4 77 ± NA 71 ± NA * If there is no SD the average consists of only one data point Average response rates (in %) with SD for time periods stratified by region, condition, modes and methods of administration and number of reminders sent. Follow up point t0 is the reported baseline time point or time of intervention as specified in the article or report. Follow up point t1 is from 0 to 1 year, follow up point t2 is from 1 to < 2 years, follow up point t3 is from 2 to < 5 years, follow up point t4 is from 5 to < 10 years and follow up point t5 is from 10 + years * If there is no SD the average consists of only one data point Disaggregating this data according to the regions of the world, the average PROMs RR decreased as follow up time period increased in most regions of the world except for the registries based in the North and South Americas, European (non-Scandinavian) registries and global registries. For North and South American registries, the average PROMs RR decreased until the 1 to < 2 years follow up mark, then increased in the subsequent years. The RRs for European and global registries increased and decreased alternatively at each time point. This trend is further illustrated in Fig.  2 . Fig. 2 Average PROMs response rates over time according to regions Average PROMs response rates over time according to regions The highest average baseline RR of 99% was observed in Asian registries. In contrast, the lowest baseline RR of 54% was observed in global registries (Table  3 ). When the data were disaggregated according to health conditions, all registries displayed varying trends as follow up years increased. The lowest baseline RR of 35% was reported by General surgery and device registries. Arthroplasty/Reconstruction/Joint related, Cancer and Cardiac registries exhibited a downward trend in RRs after baseline data collection, then increased in RRs at 1 to < 2 years follow up. In contrast, Trauma/Burns/Pain related, Spine and Miscellaneous registries displayed an increasing trend in RRs after baseline, and a decrease in RRs at 1 to < 2 years follow up period. Rare disease and Gynaecological registries exhibited an upward trend in RRs post baseline data collection. These trends are further illustrated in Fig.  3 displaying the average RRs categorized into health conditions. Fig. 3 Average PROMs response rates over time according to health condition Average PROMs response rates over time according to health condition PROMs data were collected for the longest follow up period of 10 + years by the Arthroplasty/Reconstruction/Joint related and Chronic disease registries. Cancer and General surgery and device registries reported PROMs data until the 5 to < 10 years follow up. Rare disease registries captured PROMs for the least amount of time [ 16 – 20 ], with the data being captured for less than a year. At baseline, registries collecting PROMs on the phone reported the highest RR of 100%. This was followed by paper-based mode of administration (73%) and mixed method administration (71%). Some example include the American Registry for Migraine Research [ 21 ], the Expanded Haemodialysis Registry Protocol in Colombia [ 22 ] and the Prostate Strategic Urologic Research Endeavor Prostate Cancer Registry [ 23 ] which recorded nearly 100% RR at baseline. Registries using combined methods with nearly 100% baseline RR included the New Zealand Anterior Cruciate Ligament (ACL) Registry [ 24 ], the Keio inter-hospital Cardiovascular Studies-atrial fibrillation Registry [ 25 ] and Swedish Quality Registry for Pain Rehabilitation [ 26 ]. Electronic PROMs collection method was the least effective with an average baseline RR of 63% (25.7). Only the Austrian Myeloid Registry [ 27 ] and the Outcomes Registry for Better Informed Treatment of Atrial Fibrillation [ 28 ] recorded the highest RR at baseline (99% and 94% respectively). Registries that sent more than one reminder led to a higher RR at baseline of 79% compared to those sending no reminders (63%) or only one reminder (72%) (Table  3 ). Those with more than one reminder recorded PROMs RR over 98%. Examples include Prostate Cancer Outcomes Registry-Victoria [ 29 ] and the New Zealand ACL Registry [ 13 ] both obtaining baseline RR over 98%. There was no identifiable trend in RRs in registries that sent more than one, one or no reminders for PROMs as follow up years increased. Figure  4 portrays the change in RR over time according to the total follow up years of PROMs data capture. Of the 121 registries identified in our search, 54 registries captured PROMs only once. Change in RR over time could not be calculated for these registries. Change in RR approached to zero as the total follow up time increased indicating smaller change in RRs for 67 registries as follow up time increased. Fig. 4 Change in PROMs response rates over total follow up time. In this figure the change in response rates and total follow up time point for the Netherlands Cancer Registry was not plotted. This was due to the registry collecting follow up data seven days post treatment, hence once the change in response rates was calculated, the number is a large outlier that goes beyond the scale of the figure Change in PROMs response rates over total follow up time. In this figure the change in response rates and total follow up time point for the Netherlands Cancer Registry was not plotted. This was due to the registry collecting follow up data seven days post treatment, hence once the change in response rates was calculated, the number is a large outlier that goes beyond the scale of the figure

This review demonstrated large variation and downward trends of RRs to PROMs captured in clinical registries and databases across world regions and various health conditions. We have demonstrated that RRs to PROMs in a registry setting are constantly changing as they can be influenced by many amendable factors. Guidelines and recommendations for PROMs inclusion and capture in clinical registries should be considered prior to determining timing, frequency, mode and method for PROMs administration [ 6 ]. To date, there is no clear evidence for acceptable RR to PROMs in clinical registries. Consequently, further studies are warranted to determine reasonable RRs to PROMs while maintaining collection of high-quality clinical and patient outcome data.

This is an up to date scoping review which aimed to describe RRs of PROMs captured in clinical registries and databases at various follow up timepoints. This review has identified 121 registries and databases capturing PROMs over at least one time point. Most of these registries were based in North and South Americas and Scandinavia, and captured PROMs at five different time points for ten or more years. The overall average baseline RR for the registries included in this study was 71%, similar to that of 75% reported by Wang et al. [ 13 ]. As expected, the RR trended down over time, but with a slight increase of RR after ten years of follow up. The highest baseline RR was observed in Chronic (85%) and Cancer (75%) disease registries. This could possibly occur due to symptom burden and reduced HRQoL in patients suffering from cancer and/or chronic illnesses. In general, chronic diseases are slow in progression, long in duration and also require regular medical monitoring and treatment [ 30 ]. Such conditions include stroke, diabetes, bowel disease, renal disease and diseases of the central nervous system and are associated with poor HRQoL. Since the attention is turning to patients with chronic conditions, PROMs can be used to provide patients’ perspective about impacts on their health status based on the choice of drug therapy and care provider. Care for such patients and their HRQoL might be improved if registries monitor PROMs routinely over a longer period of time [ 31 ]. Of 121 registries identified in this review, Arthroplasty/Reconstruction/Joint related registries were most common. This is not surprising, as the older population is growing in number and older adults are living longer. With fragility fractures and other fall-related injuries negatively impacting their HRQoL, limiting autonomy and increasing disability, they often require various joint and hip reconstruction procedures [ 30 ]. Such registries monitor patients for a long time and therefore, it seems reasonable that they capture PROMs at various follow up time points for more than ten years, with the RR varying from 68% at baseline to mid-50% at ten years post-surgery. With regard to the number of PROMs reminders, our results reflect conclusions from previous studies confirming that more than one reminder is required to improve RRs [ 13 , 32 ]. A similar study by Lucas et al. [ 33 ] was designed to capture electronic PROMs in prostate cancer patients. A systematic method that included automated email reminders, by which repeat contact was structured within the survey process, resulted in relatively high PROMs RRs at baseline and follow up. PROMs delivery method and mode of administration need not to be ignored either. Studies have already shown that focusing on digital mechanisms, such as email and SMS, can achieve up to 97% RRs [ 34 ]. It also appears that postal mode of PROMs administration seems to perform better than electronic means but it can be more time-consuming and resource-intensive as the data needs to be digitized afterwards [ 35 ]. The benefits of PROMs are widely accepted; however, achieving high RRs remains a significant barrier and can be influenced by many different factors. To achieve goals of evaluating treatments and improving patient care, a certain RR to PROMs is necessary [ 24 ]. The International Society of Arthroplasty Registries PROMs Working Group proposed a RR of at least 60% [ 25 ]. This number is based on what is considered a sufficient RR in survey research [ 26 ]. Unfortunately, there is no clear consensus of what RR is acceptable for other registries so far. Achieving high RRs at multiple follow up data collection points is challenging [ 24 ]. A recently published study by Ho et al. [ 36 ] assessed predictors of successful PROMs RRs in an orthopaedic outpatient setting at a public tertiary hospital. Being younger, being a new patient, having a longer wait time, being an English-speaker and being a pre- or post-operative patient were all associated with an increased RR of PROMs in this study. A similar study of 205 medical and surgical hospitals evaluated both patient and clinician factors in regards to RR to PROMs [ 37 ]. The factors included clinician training for PROMs data collection, administrative oversight, previous experience, presence of a clinician champion and payer incentives. Most of these factors were tied to a better RR. Just about half of all clinics studied yielded a 50% PROMs collection rate or better. Overwhelmingly, a high PROMs RR was linked to having at least 50% of clinicians trained in collecting patient responses and having administrative leaders oversee the whole process. Having prior experience with paper-based PROMs collection was also important [ 37 ]. Actions to improve RRs in clinical registries are needed. These may include capturing shorter forms of questionnaires or offering proxy versions for those who are ill or unable to complete the forms themselves [ 38 , 39 ]. Translated in different languages and culturally-adapted versions of PROMs for non-native speakers should be also considered. PROMs data should be regularly discussed with patients and at consumer forums to encourage more adherence, which can possibly lead to improved RRs and better-quality of the data [ 40 ]. In this study, we comprehensively reviewed a large number of clinical registries and databases from all over the world, with comparisons made across different regions and health conditions. To appreciate the findings in this review, the following limitations should be considered. First, we have likely missed several registries and databases despite our comprehensive search strategy, including an internet search in addition to a literature search of main large electronic databases. Second, a few publications and grey literature sources did not provide detailed information on the RRs or follow up time points. This has been noted in the text and tables. Third, some of the RRs in this review were extracted from registry cohort studies and may not reflect the actual RR at particular follow up points.

Clinical quality registries systematically monitor quality of healthcare within specific clinical domains by routinely collecting, analysing and reporting health-related information [ 1 – 4 ]. They use predefined set of indicators designed to assess variation across structural, process and outcome measures to benchmark quality of care. Registries have received increasing attention as a means of improving quality and reducing the cost of health and medical care, through identifying variations in clinical practice and assessing the uptake of effective treatment [ 4 ]. Patient reported outcome measures (PROMs) are standardized, validated questionnaires designed to assess patients’ perceptions of their own physical and mental status and wellbeing [ 5 ]. PROMs are increasingly being introduced in clinical registries, providing a personal perspective on the expectations and impact of treatment [ 6 ]. These instruments can complement the existing roles of registries and databases as platforms for quality assessment and benchmarking, as well as for large-scale research projects [ 6 , 7 ]. PROMs are seen as useful information to reflect and improve on the clinical work undertaken by clinicians . Including PROMs in clinical registries offers many advantages [ 6 ]. First, incorporating the patient voice ensures that measurement of healthcare outcomes is patient-centred. Second, symptom burden, health related quality of life (HRQoL) and satisfaction with care are essentially lost if not captured in “real time”. Third, capturing of comprehensive PROMs data in a registry setting can inform health service planning, research and evaluation, and facilitate benchmarking of participating health services. PROMs offer an efficient and feasible way of incorporating the patient voice into healthcare outcome assessments and clinical decision-making. PROMs reporting and use for quality improvement is different for registries with regular patient contact and data collection over many years, compared to those registries capturing PROMs from few interactions. For the optimal utilisation, good quality data and high response rates (RRs) to PROMs are necessary [ 8 ]. In contrast to clinical outcomes, patient reported outcomes are self-reported, which inherently leads to concerns about RRs. RRs that reach 100% are hardly ever achieved, especially in routine chronic and advanced care [ 9 , 10 ]. Although higher RRs have been considered desirable, the representativeness of PROMs samples in clinical registries has been rarely reported [ 11 ]. This has important practical implications with efforts required to succeed in implementing new routines and systematic collection of PROMs [ 12 ]. A recently conducted review of registry-based and cohort studies revealed a large variation in RRs to PROMs [ 13 ]. Although this review identified a large number of registries capturing PROMs, the registries examined were mainly from Scandinavia with the inclusion of only a few other registries from the UK and New Zealand. Further studies are needed to systematically evaluate trends in RRs across Europe, USA and other countries. The aim of the present study was to expand on this previous research and to identify from the existing literature as many as possible available clinical registries and databases with PROMs to describe their RRs and trends over time across various health conditions and world regions.

Below is the link to the electronic supplementary material. Additional file 1 . Provides the search strategy used in EMBASE and MEDLINE. Additional file 1 . Provides the search strategy used in EMBASE and MEDLINE.