Journal of Crohn's and Colitis, 2022, 16, 1663–1675 https://doi.org/10.1093/ecco-jcc/jjac068 Advance access publication 11 May 2022 Original Article Multicriteria Decision Analysis for Updating of Quality Indicators for Inflammatory Bowel Disease Comprehensive Care Units in Spain Xavier Calvet,a,b,c Julián Panés,b,d Javier Gallardo-Escudero,e Alberto de la Cuadra-Grande,e Elena Bartolomé,f Laura Marín,g Fernando de la Portilla,h Ester Navarro-Correal,i Ana Gutiérrez,b,j,k Pilar Nos,l Ruth Serrano,m Miguel Ángel Casado,e Manuel Barreiro-de Acostan; Consensus Group a Servei d’Aparell Digestiu, Corporació Sanitària Universitària Parc Taulí, Sabadell, Barcelona, Spain b CIBERehd, Instituto de Salud Carlos III, Madrid, Spain c Departament de Medicina, Universitat Autònoma de Barcelona, Barcelona, Spain d Gastroenterology Department, Hospital Clinic de Barcelona, IDIBAPS, Barcelona, Spain e Health Economics Department, Pharmacoeconomics & Outcomes Research Iberia [PORIB], Madrid, Spain f Sociedad Española de Calidad Asistencial, Oviedo, Spain g Gastroenterology and Hepatology Department, Hospital Universitari Germans Trias I Pujol, Barcelona, Spain h General Surgery and Digestive System Clinical Management Unit, Hospital Universitario Virgen del Rocío, Sevilla, Spain i Crohn-Colitis Care Unit, Vall d’Hebron Hospital Universitari, Barcelona, Spain j Gastroenterology Department, Hospital General de Alicante, Alicante, Spain k Instituto de Investigación Sanitaria y Biomédica de Alicante [ISABIAL], Alicante, Spain l Gastroenterology Unit, Hospital Universitario La Fe, Valencia, Spain m Confederación de Asociaciones de Crohn y Colitis Ulcerosa, Madrid, Spain n Gastroenterology Department, Hospital Clínico Universitario de Santiago de Compostela, Santiago de Compostela, Spain Corresponding author: Xavier Calvet, Servei d’Aparell Digestiu, Corporació Sanitària Universitària Parc Taulí, Sabadell, Barcelona, Spain. Email: xavier.calvet.c@gmail.com Abstract Background and Aims: Management of inflammatory bowel disease [IBD] is complex and IBD Comprehensive Care Units [ICCUs] facilitate the delivery of quality care to IBD patients. The objective of this study was to update the existing set of quality indicators [QIs] for ICCUs, based on a nationwide quality certification programme carried out in Spain, from a multi-stakeholder perspective and using multicriteria decision analysis [MCDA] methodology. Methods: An MCDA comprising three different phases was conducted. In phase 1, a systematic literature review was performed, and after validation by a scientific committee comprising 11 experts, a preliminary set of QIs was developed. In phase 2, a larger group of 49 experts determined the relevance and relative importance of each QI by prioritising and weighing the preliminary set. Finally in phase 3, the scientific committee reviewed the results and made a final selection via a deliberative process. Results: The final set comprised 67 QIs, classified as Structure [23 QIs], Process [35 QIs] and Outcome [9 QIs], which were ranked according to their relative importance. Multidisciplinary management was the most important requirement in ICCUs, followed by continuity of care, stand- ardisation of clinical care and, especially, the incorporation of patients’ reported outcomes. Conclusions: This updated set of QIs comprises a weighted and prioritised set of items that represent the essential minimum of criteria for ensuring appropriate quality of care in the management of IBD patients. Key Words: Comprehensive care unit; inflammatory bowel disease; multicriteria decision analysis; patient reported outcome; quality indicators. 1. Introduction complex. Patients often need monitoring of disease activity, Inflammatory bowel disease [IBD] comprises a group of complications, and therapeutic responses that may require the disabling, chronic, intestinal, immune-mediated, inflamma- participation of various health care specialists.9–12 tory diseases.1 Crohn´s disease [CD] and ulcerative colitis International clinical practice guidelines acknowledge [UC] are the most common IBD, and their incidence and the importance of clinical IBD multidisciplinary teams prevalence are currently increasing.2,3 Both have a major im- as the key element in achieving optimal clinical care.13–15 pact on patients’ physical health status, social functioning, Multidisciplinary management of IBD patients may increase and quality of life, and may lead to permanent disability.4–8 remission rates, reduce morbidity and surgery requirements, Despite the existence of effective surgical and medical and help patients to achieve normal social functioning.16–18 therapeutic approaches, the global management of IBD is This multidisciplinary management is best provided at IBD © The Author(s) 2022. Published by Oxford University Press on behalf of European Crohn’s and Colitis Organisation. This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial License (https://creativecommons.org/ licenses/by-nc/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited. For commercial re-use, please contact journals.permissions@oup.com 1664 X. Calvet et al. comprehensive care units [ICCUs].18 Therefore, the creation defined based on a literature review. In phase 2, QIs selected and certification of ICCUs may benefit IBD patients, as the from the previous phase were weighted and prioritised based quality of the health care provided has a direct impact on on their relevance in IBD management. Finally in phase 3, the their quality of life.19–21 It is important, therefore, to define the results were discussed and the list of final QIs in IBD were minimal structure, processes, and outcomes requirements to selected by means of a deliberative process [Figure 1]. ensure the adequate functioning of the ICCU and to produce a set of quality indicators [QIs] that assess whether a given 2.2. Participants ICCU meets these minimal requirements.19,20 A scientific committee [SC] revised the entire MCDA pro- Several studies have been conducted at local, national, and cess and actively participated in consensus phases 1, 2, and 3. international levels to define the development of a minimum The SC included five gastroenterologists, three IBD patients, set of quality indicators for the assessment and measurement two IBD nurses, one health care quality specialist, and one of quality of care for IBD patients.19,20,22–36 However, most of colorectal surgeon [Supplementary Table 1]. Additionally, a the proposals comprised general recommendations and were multidisciplinary panel of experts in IBD was selected. This not suitable for ICCU certification.22 panel was responsible for evaluating and prioritising the QIs In 2014, the Spanish Working Group on Crohn’s Disease according to their relevance, in order to establish a weighted and Ulcerative Colitis (Grupo Español de Trabajo sobre score for every indicator.41,42 Enfermedad de Crohn y Colitis Ulcerosa [GETECCU])37 con- The project recruited a total of 49 participants, all po- ducted a Delphi study that aimed to define a set of QIs for cer- tential stakeholders in the evaluation of ICCU quality tifying ICCUs, evaluating their quality, and identifying areas [Supplementary Table 2]: 20 specialised IBD gastroenterol- in need of improvement.23 Since then, GETECCU has success- ogists [GETECCU affiliates]37; 15 IBD patients (eight mem- fully certificated ICCUs all over the Spain, applying this set of bers of Crohn and Ulcerative Colitis Association [ACCU]43 QIs.38 ICCUs voluntarily applied to participate in the certifi- and seven patients who were not affiliated to ACCU and were cation process and were granted quality certifications by an recruited by SC gastroenterologists); eight IBD nurses from independent auditor if they met the requirements.39 the Nurse Working Group on Inflammatory Bowel Disease However since 2014, new advances and trends have [GETEII]44; three health care quality specialists, members of emerged in IBD management. In addition to new clinical ap- the Spanish Society for Healthcare Quality [SECA]45 with ex- proaches, the incorporation of patients’ reported outcomes pertise in the area of study; and three coloproctology surgeons [PROs] is a key aspect for determining value in health and from the Spanish Association of Coloproctology [AECP].46 must be taken into account for an optimal management The entire MCDA process was performed with the assist- of IBD.40 Moreover, new methodologies have been devel- ance of three specialists in health economics and outcomes oped to improve the item selection processes. For example, research, who were responsible for the correct application of Multicriteria Decision Analyses [MCDA] allow not only the the MCDA methodology and for providing methodological selection of key attributes but also the assessment of the rela- support throughout the evaluation process to ensure that the tive importance of each item, providing a final set of weighted methodology was well understood and correctly followed. QIs.41,42 Taking these principles into account and considering the previous set of items proposed by GETECCU in 2014, this study aimed to produce a new updated set of minimum es- QI identified in the literature review sential QIs which included patients’ reported outcome n = 2126 measurements [PROMs] and patients’ reported experience measurements [PREMs], from a multi-stakeholder perspec- Standarization by topic + elimination of inappropriate QIs PHASE 1 tive and using MCDA methodology. Draft set of QIs n = 161 2. Materials and Methods 2.1. MCDA methodology Multidisciplinary SC decision (11 experts) The MCDA applied in this study was performed according to the recommendations of the International Society for Preliminary set of QIs Pharmacoeconomics and Outcomes Research [ISPOR], n = 100 which establishes the appropriate steps and techniques for PHASE 2 these analyses.41,42 An MCDA can apply any one of three dif- Multidisciplinary experts panel prioritization (49 experts) ferent methods: 1] value measurement models, in which the alternatives are prioritised by a weighted numerical score; Prioritized and weighted set of QIs 2] outranking methods, in which alternatives are compared n = 100 by pairs and ranked; and 3] reference-level models, in which minimum levels are predefined, and it is decided whether the Revision of results by multidisciplinary SC alternative attains the level.41,42 PHASE 3 Due to the wide number of possible QIs that were expected Final set of QIs for certification and evaluation of ICCUs to be found, for practical reasons the outranking method and n = 67 the reference-level model methodology were discarded, and the value measurement model was considered the best approach Figure 1. Flowchart of the QI selection process. ICCU, inflammatory for producing this MCDA. The MCDA was structured in three bowel disease comprehensive care unit; QI, quality indicator; SC, different phases. In phase 1, a draft set of QIs was selected and scientific committee. Updating Quality Indicators for Inflammatory Bowel Disease Comprehensive Care Units 1665 2.3. MCDA development experts also distributed another 100 points between the nine 2.3.1. Phase 1: definition and selection of QIs subgroups of QIs considered in the analysis. The final score The first phase of the study focused on identifying all poten- of each individual QI was the result of multiplying the indi- tial QIs presented in the literature, to generate a first draft set vidual score in its subgroup by the global subgroup score. of items. A structured bibliography review was performed fol- When this weighted score was obtained, the final score of lowing the recommendations of the Preferred Reporting Items every single QI was mathematically adjusted so that all QIs for Systematic Reviews and Meta-Analyses [PRISMA].47 A added up to a total score of 100 points. systematic search was conducted in MEDLINE, EMBASE, The questionnaire was designed to avoid the possibility of and the Cochrane Plus Library and also in databases of articles under- or over-rating QIs. Panel participants were also in- written in Spanish, the Índice Médico Español, and MEDES structed not to score a specific QI when they felt that they [Medicina en Español]. Additionally, manual searches were lacked the expertise to evaluate it. Mathematical corrections carried out in the websites of multiple scientific societies were applied to ensure that unscored QIs did not affect the and health care institutions. Searches were performed up to final weight scores. The design of the questionnaire also al- January 2020. The search strategy used was based on the lowed the experts to provide comments on the indicators, combination of different search terms: ‘inflammatory bowel doubts regarding their comprehensibility, or suggestions for diseases’, ‘patient care team’, ‘standards’, ‘quality indicators’, improvement, which were used to improve the definitions ‘practice guidelines’, or ‘standard of care’, among others. of the QIs: no questions about comprehensibility or inter- Details of the structured bibliographical review can be found pretation were raised during the process. Finally, the team in Supplementary Tables 3 and 4. in charge of the methodology was available to the panellists The definition and implications of each indicator were re- throughout the process, to answer questions and record their corded and, additionally, the number of times each individual comments. QI was mentioned or considered in the articles assessed was Finally, a sensitivity analysis was performed assuming that also documented. To generate a more manageable set of the nine QI subgroups were equally important. According to items, the QIs included were then screened by the study’s SC. all the panel evaluations, each QI was assigned an individual Based upon the information gathered, QIs with similar topics final score based on experts’ assessments. were unified as one single item. Furthermore, items with a low 2.3.3. Phase 3: deliberative process number of mentions during the bibliographical review were revised; most of them were considered of low relevance and In this last phase of the MCDA, the results of phase 2 were consequently eliminated. evaluated by the SC. The aim of the final phase 3 of the study Based on these results, a questionnaire with the definition and was to examine the results of the MCDA through a delibera- implications of the draft set of QIs was designed. This ques- tive process and to select the final set of QIs. tionnaire was revised by all the SC members who evaluated the First, the SC set a score threshold in order to select the QIs suitability of each single indicator for inclusion as a QI for the that were most relevant. Three different mathematical assess- ICCU certification. When a particular indicator was excluded, ments of the results were conducted: the change in ranked the SC members specified whether this was due to the indicator score distribution of individual QIs; change in ranked global being unsuitable for an audit evaluation, irrelevant, or for other satisfaction score according to individual QIs; and change in reasons. The SC revised and proposed changes for the defin- ranked total cumulative score according to individual QIs. ition for each QI, ensuring that the definitions were clear and Moreover, sensitivity analysis results were also taken into comprehensible to all the stakeholders who participated in the consideration. QIs of relevance obtained from this scenario subsequent phases of the study. Finally, the SC members were were reconsidered if they had not been included in the ori- asked to provide any additional QI that might be considered ginal assessment. Finally, all discarded QIs were evaluated of relevance and had not been included in the draft set of QIs. one by one by the SC. Those unanimously considered of clin- Once all SC members had completed the questionnaire, re- ical relevance by the SC were also included in the final set. sults were presented and discussed in an online board meeting with all the SC members, who determined the final set of QIs. 3. Results The items for which no unanimous agreement was reached 3.1. Identification and selection of the first set of were re-evaluated until a consensus was achieved by all the QIs members of the SC. The set of QIs obtained after this process was assessed in phase 2. The systematic literature review identified a total of 216 pub- lications of interest. After the elimination of duplicates and the exclusion of articles that did not meet the selection cri- 2.3.2. Phase 2: weighting and prioritisation of the teria, a total of 60 publications were considered adequate for QIs data extraction [Supplementary Figure 1]. In the second phase of the study, the multidisciplinary panel From the assessment of these 60 publications selected in the of 49 participants prioritised the preliminary set of QIs. QIs literature review, 2126 potential QIs related to IBD manage- were ranked by importance according to a weighted score. ment were identified. Most of these initial QIs were repeated For this purpose, the preliminary set of QIs was categorised in more than one publication or considered the same topic. into three groups [structure, process, and outcomes], and sub- After eliminating duplicates, the number of QIs was reduced sequently classified in nine more subgroups of 10 to 12 items, to 268. Additionally, QIs that did not appear in five or more which grouped items with related topics [Figure 2]. publications were specifically revised at a first SC meeting and The experts had to distribute a total of 100 points between those considered irrelevant or un-evaluable were eliminated. the QIs in each subgroup, considering that the more im- This led to a final draft set of 161 QIs [139 quality items and portant indicators should receive higher scores. Afterwards, 22 PROMs and PREMs]. 1666 X. Calvet et al. STRUCTURE QIs PROCESS QIs OUTCOMES QIs Facilities and Clinical procedural Clinical outcomes 100 pts. 100 pts. 100 pts. Individual QI priorization by subgroup specific services management and HRQoL (12 indicators) (10 indicators) (10 indicators) Reference HC Process quality and 100 pts. 100 pts. professionals control (12 indicators) (11 indicators) Clinical techniques, Patient monitoring 100 pts. 100 pts. reference protocols and follow-up (12 indicators) (12 indicators) IBD research and 100 pts. disease screening (11 indicators) Subgroup priorization Active patient 100 pts. communication (10 indicators) 100 pts. Figure 2. Methodology followed for the prioritisation and weighting of the QIs used during phase 2. HC, health care; IBD, inflammatory bowel disease; QI, quality indicator; HRQoL: health-related quality of life. This first preliminary set of QIs was integrated in a ques- Finally, 33 items were discarded [Supplementary Table 7], tionnaire which was administered to individual SC members and a definitive set of 67 QIs was selected. Of this final set, for phase 1 evaluation. At a second meeting considering phase 23 QIs were classified as ‘structure’, 35 as ‘process’, and nine 1 evaluations, the SC selected a total of 100 QIs [36 struc- as ‘outcome’ [Supplementary Tables 8–10]. Scores were then ture, 53 process, and 11 outcome, of which two were clinical redistributed eliminating the unselected items, and were ad- items and nine PROMs and PREMs] and were then assessed justed to ensure that all the QIs selected added up to 100 in phase 2. points. 3.2. Weighting and prioritisation of the criteria QIs 3.4. Description of selected QIs The preliminary set of 100 QIs was evaluated by the 49 Table 1 shows the selected QIs, ranked by relevance ac- members of the multidisciplinary panel. The responses of the cording to the participants’ preferences. The panel ranked the panel allowed the categorisation of the QIs from the highest QIs related to the multidisciplinary management of IBD as weighted score [2.06] to the lowest score [0.51], based on the the most important. The presence of gastroenterologists, IBD preferences of the participants. The scores according to the nurses, experienced surgeons, endoscopists, and radiologists panel’s preferences and the sensitivity analysis are shown in in the IBD multidisciplinary team was considered the most Supplementary Tables 5 and 6. important structural aspect of an ICCU. After multidisciplinary management, the next most im- 3.3. Deliberative process and selection of final portant area was the continuity and standardisation of clin- QIs list ical care. Thus, process QIs referring to the availability of on-demand consultations [either in person or by phone] in In this final phase, the phase 2 results were evaluated. Based case of flares between the scheduled visits, and the availability on the analyses performed, the optimal threshold would be at of specific IBD diagnosis and treatment protocols, were also a point between the first 45 and 64 QIs. Following this meth- scored highly. PROMs and PREMs were assigned a major odology, the SC finally decided to consider the first 50 QIs as role. Measurement of the disease status from the patient’s the most relevant items [Supplementary Figures 2–4]. perspective by using PROMs was considered an important Sensitivity analysis was also considered. QIs that were outcome QI. Furthermore, many PREMs reflecting patients’ within the set threshold of the first 50 items in this scenario, evaluation of the health care received were regarded as rele- and had not been considered relevant in the original assess- vant and were included as QIs. ment, were included in the list of selected QIs. Ten additional QIs were considered relevant. To ensure that the use of this approach did not lead to the exclusion of relevant items, all 4. Discussion excluded QIs were assessed individually, and those considered QIs can be defined as measurable, objective standards used relevant by consensus of all the SC members were also in- to monitor and control the structure, process, and results cluded in the final set. Seven QIs were incorporated in this of care. Their measurement provides a basis for the imple- way. mentation of corrective measures and continuous quality Updating Quality Indicators for Inflammatory Bowel Disease Comprehensive Care Units 1667 Table 1. Final list of QIs selected after the implementation of the MCDA methodology Position QI Definition Group Inclusion criteriaa Weighted score 1 Two gastroenterologists The ICCU has at least two gastro- Structure Original assessment 2.723 specialised in IBD enterologists specialised in IBD 2b Nurse specialised in IBD The ICCU has at least one nurse Structure Original assessment 2.391 specialised in IBD 3b Surgeon/surgery team The ICCU has at least one surgeon Structure Original assessment 2.296 specialised in IBD or a surgery team specialised in the surgical treatment of patients with IBD 4 Endoscopist specialised in The ICCU has at least one endosco- Structure Original assessment 1.883 IBD pist with experience in the diagnosis and treatment of patients with IBD 5b Radiologist specialised in IBD The ICCU at least one reference Structure Original assessment 1.836 radiologist specialised in IBD 6b MRI technique access The ICCU has access to MRI exam- Structure Original assessment 1.750 inations 7b Specific draw lines for the In patients with a UC flare who Process Original assessment 1.740 treatment with cyclosporine do not respond to intravenous or anti-TNF in a UC flare corticoids, treatment with cyclo- sporine or anti-TNF drugs is initiated after a maximum period of 7 days 8b Outpatient nurse consulting The ICCU has an outpatient nurse Structure Original assessment 1.715 room consulting room 9b Updated clinical protocols The ICCU keeps the clinical Structure Original assessment 1.708 protocols updated or follows the national/international guidelines on IBD management 10 Nurse specialised in ostomies The ICCU has the support of a Structure Original assessment 1.697 nurse specialised in ostomies 11 Patients requiring care be- The ICCU has the infrastructure to Structure Original assessment 1.677 tween visits attend to patients with symptoms requiring care between the pro- grammed visits 12 Laparoscopic surgery access The ICCU has access to laparo- Structure Original assessment 1.662 scopic surgery or TAMIS 13b Specific draw-lines for the In patients with IBD who have Process Original assessment 1.630 immunosuppressor treat- received two or more rounds of ments in corticoid-dependent corticoids during the previous year, patients immunosuppressant treatment is initiated 14b Extension of the illness in the When a patient is diagnosed with Process Original assessment 1.576 diagnosis IBD, a complete study of the exten- sion of the pathology is performed, including a colonoscopy and an evaluation of the involvement of the small intestine, if there is suspicion of CD 15b Pharmacotherapeutic proto- The ICCU has a standardised proto- Structure Original assessment 1.566 cols col for the use of medicines, speci- fying when to administer them and how to measure their efficacy, and listing the associated adverse events 16 Colonoscopy or radiology for In patients with symptoms despite Process Original assessment 1.562 guiding a therapeutic decision the treatment for IBD, the activity of the disease is evaluated by analyt- ical parameters and a colonoscopy or radiology to guide therapeutic decision 17 Rheumatologist specialised The ICCU has the support of a Structure Original assessment 1.554 in IBD rheumatologist with experience in the management of IBD patients 18b Mortality rates of elective The mortality of elective surgery is Outcome Original assessment 1.554 surgery under 2% for the past 5 years 1668 X. Calvet et al. Table 1. Continued Position QI Definition Group Inclusion criteriaa Weighted score 19b Morbidity rates of elective In patients with IBD treated by Outcome Original assessment 1.534 surgery elective surgery, the rate of severe morbidity requiring re-treatment is under 10% 20 Measurement of outcomes The ICCU reports information Outcome Original assessment 1.534 reported by the patients about PROMs annually in patients’ about the perception of their medical records. Of the total num- own general or specific health ber of patients seen, 80% reported [PROM] good control of their disease based on their perception of their own general or specific health, follow- ing the methodology proposed by ICHOM28 21 Specific draw-lines to the Any treatment must be stopped Process Original assessment 1.524 treatments use in refractory when the refractory criteria are met CD 22b CT technique access The ICCU has access to CT exam- Structure Original assessment 1.519 inations 23b Multidisciplinary IBD com- Complex decisions, including the Process Original assessment 1.509 mittee in the ICCU indication for surgery, are taken by a multidisciplinary committee of IBD comprising gastroenterologists, radiologists, surgeons and nurses 24 Access to all pharmaceutical The ICCU offers patients access to Process Original assessment 1.499 treatments all medicines approved for IBD if considered appropriate 25 Decision making including The ICCU selects the treatment Process Original assessment 1.491 the agreement of the patient which best fits the needs of the patients after obtaining their agree- ment 26b Specialised outpatient con- The ICCU has private rooms to Structure Original assessment 1.485 sulting rooms receive outpatient visits, specialised in IBD 27b Anti-TB treatment in patients Before initiating a biologic therapy, Process Original assessment 1.485 treated with biologic medi- IBD patients with any sign of latent cines TB have received an appropriate anti-TB treatment 28b Abdominal echography diag- The ICCU has access to abdominal Structure Original assessment 1.484 nosis techniques echography techniques 29 Contact with the ICCU in Each year the ICCU reports infor- Outcome Original assessment 1.484 case of emergencies [PREM] mation on patients’ perceptions about the service received. Of the total number of patients seen, 80% responded positively to the follow- ing question about PREM: ‘In case of emergency, I have the opportun- ity to communicate with my IBD care team when I have symptoms of a flare or complications’ 30 Information about the path- Each year the ICCU reports infor- Outcome Original assessment 1.458 ology [PREM] mation on patients’ perceptions about the service received. Of the total number of patients seen, 80% responded positively to the follow- ing question about PREM: ‘My IBD care team has given to me sufficient information about my disease’ 31 Follow-up during the phases Each year the ICCU reports infor- Outcome Original assessment 1.456 of the pathology[PREM] mation on patients’ perceptions about the service received. Of the total number of patients seen, 80% responded positively to the follow- ing question about PREM: ‘My IBD care team participates in all phases of my disease [emergencies, outpatient visits, hospitalisation, endoscopies, etc.]’ Updating Quality Indicators for Inflammatory Bowel Disease Comprehensive Care Units 1669 Table 1. Continued Position QI Definition Group Inclusion criteriaa Weighted score 32 Confidence in the IBD care Each year the ICCU reports infor- Outcome Original assessment 1.449 team [PREM] mation on patients’ perceptions about the service received. Of the total number of patients seen, 80% responded positively to the follow- ing question about PREM: ‘I am convinced that my IBD care team is able to manage appropriately my disease’ 33b Gastroenterologist present A gastroenterologist of the ICCU Process Original assessment 1.444 during hospital stay participates actively in the manage- ment of the hospitalised patients 34 Adequate attention in medical Each year the ICCU reports infor- Outcome Original assessment 1.438 visits [PREM] mation on patients’ perceptions about the service received. Of the total number of patients seen, 80% responded positively to the following question about PREM: ‘My physician pays attention to me during medical visits’ 35b Emergency services protocols The ICCU has a protocol for the Structure Original assessment 1.434 for IBD patients care of IBD patients who use the emergency service 36b Colorectal cancer screening All IBD patients in the ICCU with Process Original assessment 1.417 programmes indication of colorectal cancer screening in accordance with inter- national guidelines are evaluated by periodical colonoscopies 37b Information on risks/benefits The clinical history records that the Process Original assessment 1.414 before a surgical procedure patient has received appropriate prior information about the benefits and risks associated with a surgery 38 Consideration of patients’ Each year the ICCU reports infor- Outcome Original assessment 1.405 opinions[PREM] mation on patients’ perceptions about the service received. Of the total number of patients seen, 80% responded positively to the follow- ing question about PREM: ‘My opinion and my personal and work- ing situation have been taken into account in the decisions regarding the management of my disease’ 39b Facilities for administering The ICCU has facilities for the Structure Original assessment 1.402 intravenous medicines administration of intravenous medi- cines 40b ICCU located in the digestive The ICCU is located in the digestive Structure Original assessment 1.394 system service system service 41 Annual re-evaluation of pa- All patients are re-evaluated at Process Original assessment 1.389 tients least once a year, including those in remission 42b Elective surgeries performed Elective surgeries are performed by Process Original assessment 1.386 by specialists the surgeons in the ICCU staff 43b ICCU located in a hospital The ICCU is located in a hospital Structure Original assessment 1.384 with endoscopy unit with an endoscopy unit in the di- gestive system service 44b Emergency consultation The ICCU can attend to outpatient Process Original assessment 1.384 services consultations when there is suspi- cion of a severe flare or complica- tion, at least during workdays 45b Biologic medicines monitor- The ICCU has a programme to Process Original assessment 1.372 ing programmes perform the clinical and laboratory monitoring of patients treated with biologic therapies 1670 X. Calvet et al. Table 1. Continued Position QI Definition Group Inclusion criteriaa Weighted score 46 Severe UC management The ICCU has specific protocols for Structure Original assessment 1.369 protocol the management of patients with severe UC 47 ICCU located in a hospital The ICCU is located in a hospital Structure Original assessment 1.359 with surgery department with a surgery department 48 Attenuated vaccines in pa- Attenuated virus vaccines are Process Original assessment 1.356 tients treated with biologic avoided in patients treated with therapies or immunosuppres- immunosuppressants or biologic sants therapies 49b Information on risks/ The clinical history records that Process Original assessment 1.352 benefits before starting an the patient has received appropri- immunomodulator or im- ate information about the bene- munosuppressant treatment fits and risks associated with an immunomodulator or immuno- suppressant treatment prior to its initiation 50b Information on risks/bene- The clinical history records that Process Original assessment 1.352 fits before starting a biologic the patient has received appropri- treatment ate information about the benefits and risks associated with a biologic treatment prior to its initiation 51b Phone consultation service at The ICCU has phone consulting Structure Sensitivity analysis 1.346 scheduled times lines available for patients at sched- uled times, at least on workdays 52b Cards with the contact data The patient has received informa- Process Sensitivity analysis 1.346 of the ICCU tion with the contact data of the ICCU, including the phone number and his/her attendance schedule 53b TB test before starting a bio- Before starting a biologic treatment, Process Sensitivity analysis 1.336 logic treatment patients with IBD have performed a test to detect TB, according to the current recommendations 54b HBV vaccination All patients with IBD have been vac- Process Clinical 1.327 cinated against HBV 55b Pre-ostomy interviews Before a surgical intervention that Process Sensitivity analysis 1.308 might include an ostomy, the patient has been interviewed by a nurse specialised in ostomies 56b Antiviral treatment in patients All patients with a positive HBsAg Process Clinical 1.302 with a positive HBsAg test test receive antiviral treatment while undergoing a biologic therapy 57b Monitoring of The ICCU has a programm to Process Clinical 1.295 immunomodulator or im- perform the clinical and laboratory munosuppressant treatments vigilance of patients treated with immunomodulator or immunosup- pressant therapies 58b Priority visits The ICCU has a circuit of prior- Process Sensitivity analysis 1.291 ity visits for patients referred from the GP, emergency service, or other health care professionals due to a recent diagnosis or a severe flare of IBD 59b Physician specialised in IBD Each patient is assigned a physician Process Clinical 1.266 assigned to each patient specialised in IBD, identifiable, and responsible for his/her clinical care 60b Specific draw-lines for the Patients with IBD treated with Process Clinical 1.261 maintenance of thiopurines thiopurines maintain this treatment during the pregnancy during pregnancy. If the patient pre- fers to finish the therapy, this must be documented 61b Registry of patients treated by The ICCU has a registry recording Process Sensitivity analysis 1.259 the ICCU all patients treated by the unit Updating Quality Indicators for Inflammatory Bowel Disease Comprehensive Care Units 1671 Table 1. Continued Position QI Definition Group Inclusion criteriaa Weighted score 62b Gastroenterologist with up- The gastroenterologists of the ICCU Process Sensitivity analysis 1.213 dated training participate at least once a year in an IBD training activity 63b HBV screening In patients with IBD, screening HBV Process Sensitivity analysis 1.213 tests are performed at the onset patient’s first visit to the UAI. 64b Registry of patients receiving The ICCU has a registry recording Process Sensitivity analysis 1.209 biologic therapies all patients treated with biologic therapies 65b Scientific research projects The ICCU performs or participates Process Sensitivity analysis 1.190 in scientific IBD research projects 66b Antithrombotic treatment Antithrombotic treatment is initi- Process Clinical 1.172 during hospital stays ated in all hospitaliesd patients 67b CMV test in UC In patients with UC and a severe Process Clinical 1.144 corticoid-dependent flare, rectal bi- opsies are obtained in order to rule out CMV infection CD, Crohn´s disease; CMV, cytomegalovirus; CT, computerised tomography; GP, general practitioner; HBsAg, hepatitis B surface ntigen; HBV, hepatitis B virus; IBD, inflammatory bowel disease; ICCU, IBD comprehensive care units; ICHOM, International Consortium of Health Outcomes Measurement; MCDA, multicriteria decision analysis; MRI, magnetic resonance imaging; PREM, patient-reported experience measure; PROM, patient-reported outcome measurement; QI, quality indicators; TAMIS, trans-anal minimal invasive surgery; TB, tuberculosis; TNF, tumour necrosis factor; UC, ulcerative colitis. a The screening methods were: 1] original assessment, consisting in the selection of the first 50 indicators, the criterion considered most suitable by the scientific committee based on the statistical assessment of the results; 2] clinical: assessment of the indicators that were excluded in the original assessment but were then reincorporated due to their clinical relevance and based on the scientific committee’s preferences; and 3] sensitivity analysis, consisting in the reincorporation of the indicators within the first 50 places in this scenario, and which were not under consideration in the original assessment.. b Indicator also considered in the previous set: Calvet X et al. J Crohns Colitis 2014;8:240–51. improvement.48,49 Therefore, QIs enable professionals and or- giving additional value to the items that were considered es- ganisations to monitor and evaluate how health care systems sential. This process serves as a starting point for identifying respond to patients’ needs.50 They provide a quantitative basis the most relevant items and for prioritising the QIs that should for clinicians and organisations aiming to achieve improve- be achieved first to ensure high-level quality of care. The cur- ments in care.51 rent review also identified certain QIs that have been rendered QIs also make it possible to compare health care units of obsolete by advances in IBD management, and thus serves similar characteristics. They are crucial for the process of cer- as part of a periodical updating process.53 A third and final tification, which aims to harmonise and raise the quality of reason for updating the QIs was to encourage patients to par- care delivered to patients.32 QIs are thus essential to ensure ticipate in their own health care management and evaluation. optimal health care services in all clinical fields.31 The study highlights five key essential aspects for evaluating In the GETECCU Delphi consensus report, an expert panel ICCUs: 1] the multidisciplinary and specialised management formed by patients, IBD nurses, surgeons, and gastroenter- of IBD patients; 2] the continuity of care, comprising both the ologists selected a set of 56 QIs [12 ‘structure’, 20 ‘process,’ care on demand and the participation of the ICCU team in all and 24 ‘outcome’].23 Based on the consensus results, a final the phases of IBD management; 3] the standardisation of clin- set of 53 standardised QIs adapted for external auditing was ical care; 4] the evaluation of clinical outcomes using PROMs; established in 2016.52 Using this standardised set of QIs, and 5] the assessment of quality of care using PREMs. GETECCU has implemented a Certification of Inflammatory The updated set of QIs includes 46 items that were previ- Bowel Disease Units [CUE] programme since 2017. The cer- ously recorded in the original GETECCU Delphi consensus,23 tification process was voluntary and was performed by ex- and thus adds 21 new QIs selected during this MCDA study: ternal auditors. In cases where minimum compliance is not eight ‘structure’, six ‘process’, and seven referring to the use achieved, GETECCU offers help by designing an action plan of PROMs and PREMs to measure the ICCU’s quality of care. specific for the applicant ICCU.39 Participants were instructed to waive the evaluation of a Up to January 20 21, 53 ICCUs have been audited and given QI if they felt unprepared, and the scoring system was 51 have been granted the quality accreditation. Healthcare adapted to ensure that these missing responses did not affect professionals have expressed high levels of satisfaction with the final scores. The rates of non-scored QIs were low for the certification programme, recording average satisfaction most variables. As expected, non-clinicians felt unprepared scores of 8.5 out of 10.39 The new set of QIs obtained using to rate the importance of the clinical QI score. For example, an MCDA approach can be regarded as a major improve- most patients did not score the outcome indicators concerning ment, with a view to development for the CUE programme. mortality and morbidity. The MCDA methodology aids the decision-making process, Many of the QIs in the present study have also appeared providing clarity on the items that are relevant and the im- in earlier publications.19,20,22–36 Among these proposals, the portance attached to each one, and thus increasing the con- recent consensus conducted by the European Crohn’s and sistency, transparency, and legitimacy of the processes.41,42 Colitis Organisation [ECCO] supported the construction of The results of this MCDA present QIs ranged by importance, a list of criteria summarising current standards of care in IBD 1672 X. Calvet et al. in Europe.19,22 The final list comprised 111 QIs [31 ‘structure’, weight of each group in defining the QIs. In this sense the ratio 42 ‘process’, 38 ‘outcome’]. However, the ECCO concluded of gastroenterologists to other professionals or patients was that the list of QIs was not intended as a basis for certification slightly lower, and the rate of patients’ representatives slightly or accreditation as it was recognised that few centres would higher, than in the previous set of QIs created in 2014.23 In meet all the criteria.19,22 The ECCO’s proposal of QIs was not addition, among the patients included in the multidisciplinary published when the literature review was performed, and so panel, eight were members of the ACCU patients’ association the ECCO criteria were not available at the time of beginning or were selected by the SC gastroenterologist. This approach the MCDA process. However, the SC checked the new QIs carries a risk of a bias towards higher-educated patients with for relevant missing indicators. The ECCO criteria were very a higher than average interest in IBD. However, the SC con- similar to those previously published by GETECCU,23 and no sidered that an adequate evaluation of a set of QIs referred to new QIs referring to key aspects of care were identified. IBD units would require a thorough knowledge of the disease Outside Europe, in Canada, several studies have published and the health care system. As in the case of gastroenterol- QI sets assessing various measures, such as the EPIC group ogists, nurses, surgeons, and the other specialists, an ‘expert study in 2014,36 with a total of 11 QIs for the correct man- patient’ profile was selected for the panel. Therefore, we be- agement of IBD, and the more recent study conducted by the lieve that choosing patients with a thorough knowledge of the PACE group in 2019, which proposed a total of 45 QIs [nine disease was a strength rather than a limitation of the study. ‘structure’, 30 ‘process’, and six ‘outcome’].29 Despite the dif- In addition, other experts involved in the ICCU such as ferences in scope and geographical jurisdiction, all the studies nutritionists, rheumatologists, radiologists, pharmacists, psy- present a number of similarities. Most of them were con- chiatrists, psychologists, or ostomy specialists were not repre- ducted following the Delphi methodology or a similar meth- sented in the study, as they were not considered to be involved odology like the RAND/UCLA approach.29 To the best of our in the unit’s core activities. This might be another limitation knowledge, the present study is the first MCDA conducted for of the study and the inclusion of these practitioners should be the development of a set of QIs for ICCU certification. considered in future projects. Although previous projects have also included multidis- Finally, the ideal number of QIs is not well established. This ciplinary experts’ panels, in the present study, efforts were number should maintain a balance between a wide array of made to include panellists from five different Spanish soci- data captured and the practicality of the set of QIs to be used. eties, including gastroenterologists [GETECCU], patients´ In conclusion, the 67 QIs proposed here, created from a associations [ACCU], nurses’ societies [GETEII], experts in multi-stakeholder perspective and applying the MCDA meth- health care quality assurance [SECA], and coloproctology odology, constitute a weighted and prioritised set of items surgeons [AECP]. As a result, multiple points of view were that represent the essential minimum criteria to ensure quality recorded, filling possible gaps in knowledge between groups of care for IBD patient management. Furthermore, the em- and enhancing their respective strengths. phasis on patient-centred outcome measures is a key aspect of Another strong point of the study is the inclusion of the the present study and offers a new approach to the evaluation evaluation of patient-centred outcomes, for instance consid- of ICCU quality and performance. ering PROs to promote patient empowerment. Several studies have considered patient-centred outcomes in IBD manage- ment. The ICHOM project in IBD, based on an international Funding working group, selected a minimum set of 12 standards of AbbVie sponsored the CUE programme. AbbVie had no role patient-centred outcome measures for used in different health in the study design, data collection and analysis, decision to care settings.28 Another example is the IQCARO Project, in publish, or preparation of this manuscript. which a 10-indicator checklist was generated entirely from the perspective of IBD patients. The items selected covered important aspects including professionalism, patients’ au- Conflict of Interest tonomy, information, and accessibility and continuity of XC reports grants from AbbVie, Kern, and Janssen; reports care from the patients’ perspective.31 Other studies have de- consultancy fees/honoraria from AbbVie, Janssen, Pfizer, termined patients’ satisfaction by administering the ‘Quality and Takeda; reports support for travel to meetings from of Care Through Patients´ Eyes’ [QUOTE-IBD] survey,54,55 AbbVie, Takeda, Janssen, and Ferring; reports payment for which has been used frequently in recent decades.20,56,57 lectures including service on speaker bureaus from Abbott, This study is not without limitations. The first is that it was Janssen, Pfizer, and Takeda; and reports payment for devel- performed from the perspective of a public national health opment of educational presentations from Abbott, Janssen, care system [the Spanish National Health System], and so and Pfizer. JP reports grants from AbbVie and Pfizer; re- the QIs included here may not be automatically applicable ports consultancy fees/honoraria from AbbVie, Arena, Athos, to other health care models. However, the QIs defined in the Boehringer-Ingelheim, Celgene, Galapagos, Genentech/Roche, present study focus on several key aspects of care and, with GlaxoSmithKline, Janssen, Mirum, Morphic, Nestlé, Origo, some adaptation, are probably generalisable to most clinical Pandion, Pfizer, Progenity, Protagonist, Takeda, Theravance, care settings. and Wasserman; reports support for travel to meetings from Another possible limitation of the study is the distribution AbbVie and Takeda; reports payment for lectures including and number of experts and areas of expertise involved in the service on speaker bureaus from Abbott, Janssen, Pfizer, and process. The multidisciplinary panel included gastroenterol- Takeda; and reports payment for development of educational ogists, IBD patients, IBD nurses, quality health care specialists presentations from Abbott, Janssen, Pfizer, and Roche. JG-E, and coloproctology surgeons, in order to represent the wide AC-G and MAC are employees of PORIB, a consultant com- range of staff members an ICCU may have. The distribution pany, focused on economic evaluation of health interventions of experts was thought to be representative of the relative and health outcomes research, which has received financial Updating Quality Indicators for Inflammatory Bowel Disease Comprehensive Care Units 1673 support from GETECCU for providing methodological sup- Antonio Arroyo [Hospital Universitario de Elche, Alicante, port for the development of the project and collaborating in Spain]. Quality Healthcare Specialists [SECA]: Inmaculada manuscript writing. LM reports consultancy fees/honoraria Mediavilla [Sociedad Española de Calidad Asistencial, from Abbvie, Janssen, Galápagos, and Takeda; informs about Oviedo, Spain], Manuel Satiña [Sociedad Española de Calidad support for journey to meetings from Janssen; and notifies the Asistencial, Oviedo, Spain]. payment of conferences, including the lectures in office, from Abbvie, Janssen, and Sandoz. FP reports lectures fees from Ethicon/Johnson and Johnson, Covidien, Braun, Prostrakan; Author Contributions consultancy for Covidien, B&K, and LOGSA. EN-C reports XC: concept and design, acquisition of data, analysis and in- consultancy fees/honoraria from AbbVie, Galapagos, Takeda; terpretation of data, drafting of the article, and final approval reports support for travel to meetings from AbbVie, Janssen, of the version. JP: concept and design, acquisition of data, MSD, Pfizer,Takeda; reports payment for lectures including analysis and interpretation of data, drafting of the article, and service on speaker bureaus from Abbott, Biogen, Janssen, final approval of the version. JGE: concept and design, ac- MSD, Pfizer, Sandoz, and Takeda. AG reports consultancy fees/ quisition of data, analysis and interpretation of data, meth- honoraria from Abbvie, Celgene, Galapagos, Janssen, Pfizer, odological support, drafting of the article, and final approval Takeda; reports support for travel to meetings from AbbVie, of the version. ACG: concept and design, acquisition of data, Janssen, and Takeda; reports payment for lectures including analysis and interpretation of data, methodological support, service on speaker bureaus from Abbvie Janssen, Pfizer, and drafting of the article, and final approval of the version. EB: Takeda. PN has served as speaker, consultant, and advis- concept and design, revising it critically for important intel- ory board for and has received research funding from MSD, lectual content, and final approval of the version. LM: con- Abbvie, Janssen, Takeda, Roche, Sandoz, Ferring, Adacyte, cept and design, revising it critically for important intellectual Faes Farma, Kern Pharma, Pfizer, Shire Pharmaceuticals, content, and final approval of the version. FP: concept and Vifor Pharma, Chiesi, and Tillots. RS has collaborated in sev- design, revising it critically for important intellectual content, eral studies subsidised by Abbvie, Galápagos, Janssen, MSD, and final approval of the version. ENC: concept and design, Pfizer, Takeda, Adacyte, Amgen, Dr Falk Pharma, Ferring, revising it critically for important intellectual content, and Kern, Roche, Biogen, Bristol Myers Squibb, Chiesi, Faes final approval of the version. AG: concept and design, revising Farma, Fresenius Kabi, Sandoz, and Tillotts Pharma. MBA it critically for important intellectual content, and final ap- has served as a speaker, consultant and advisory member for proval of the version. PN: concept and design, revising it crit- or has received research funding from MSD, AbbVie, Janssen, ically for important intellectual content, and final approval of Kern Pharma, Celltrion, Takeda, Gilead, Celgene, Pfizer, the version. RS: concept and design, revising it critically for Sandoz, Biogen, Fresenius, Ferring, Faes Farma, Dr Falk important intellectual content, and final approval of the ver- Pharma, Chiesi, Gebro Pharma, Adacyte, and Vifor Pharma. sion. MAC: concept and design, acquisition of data, analysis and interpretation of data, methodological support, drafting of the article, and final approval of the version. 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