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Patient Experience or Patient Satisfaction? A Systematic Review of Child- and Family-Reported Experience Measures in Pediatric Surgery

  • Julia Ferreira
    Affiliations
    McGill University Faculty of Medicine and Health Sciences, Montreal, Quebec, Canada

    Harvey E. Beardmore Division of Pediatric Surgery, The Montreal Children's Hospital, McGill University Health Center, Montreal, Quebec, Canada
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  • Prachikumari Patel
    Affiliations
    Harvey E. Beardmore Division of Pediatric Surgery, The Montreal Children's Hospital, McGill University Health Center, Montreal, Quebec, Canada
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  • Elena Guadagno
    Affiliations
    Harvey E. Beardmore Division of Pediatric Surgery, The Montreal Children's Hospital, McGill University Health Center, Montreal, Quebec, Canada
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  • Nikki Ow
    Affiliations
    Department of Occupational Science and Occupational Therapy, Faculty of Medicine, The University of British Columbia, Vancouver, British Columbia, Canada
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  • Jo Wray
    Affiliations
    Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK
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  • Sherif Emil
    Affiliations
    McGill University Faculty of Medicine and Health Sciences, Montreal, Quebec, Canada

    Harvey E. Beardmore Division of Pediatric Surgery, The Montreal Children's Hospital, McGill University Health Center, Montreal, Quebec, Canada
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  • Dan Poenaru
    Correspondence
    Corresponding author. FRCSC, FACS,FAAP, Harvey E. Beardmore Division of Pediatric Surgery, The Montreal Children's Hospital, Room B04.2022, 1001 Decarie Boulevard, Montreal, Quebec H4A 3J1. Tel.: +1 514 412 4498; fax: +1 514 412 4289.
    Affiliations
    McGill University Faculty of Medicine and Health Sciences, Montreal, Quebec, Canada

    Harvey E. Beardmore Division of Pediatric Surgery, The Montreal Children's Hospital, McGill University Health Center, Montreal, Quebec, Canada
    Search for articles by this author
Open AccessPublished:January 19, 2023DOI:https://doi.org/10.1016/j.jpedsurg.2023.01.015

      Summary

      Purpose

      Patient-reported outcomes measures (PROMs) and patient-reported experience measures (PREMs) are increasingly recognized as important health care quality indicators. PREMs measure patients’ perception of the care they have received, differing from satisfaction ratings, which measure their expectations. The use of PREMs in pediatric surgery is limited, prompting this systematic review to assess their characteristics and identify areas for improvement.

      Methods

      A search was conducted in eight databases from inception until January 12, 2022, to identify PREMs used with pediatric surgical patients, with no language restrictions. We focused on studies of patient experience but also included studies that assessed satisfaction and sampled experience domains. The quality of the included studies was appraised using the Mixed Methods Appraisal Tool.

      Results

      Following title and abstract screening of 2,633 studies, 51 were included for full-text review, of which 22 were subsequently excluded because they measured only patient satisfaction rather than experience, and 14 were excluded for a range of other reasons. Out of the 15 included studies, questionnaires used in 12 studies were proxy-reported by parents and in 3 by both parents and children; none focused only on the child. Most instruments were developed in-house for each specific study, without patients' involvement in the process, and were not validated.

      Conclusions

      Although PROMs are increasingly used in pediatric surgery, PREMs are not yet in use, being typically substituted by satisfaction surveys. Significant efforts are needed to develop and implement PREMs in pediatric surgical care, in order to effectively capture children’s and families’ voices.

      Level of Evidence

      IV

      Keywords

      Abbreviations

      PREMs
      Patient-Reported Experience Measures
      PROMs
      Patient-Reported Outcome Measures
      HRQOL
      Health-Related Quality of Life
      CYP
      Children and Young People
      HIC
      High-income countries
      USA
      United States

      Funding Statement

      This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.

      Disclosure Statement

      The authors report no proprietary or commercial interest in any product mentioned or concept discussed in this article.

      Introduction

      Patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) are critical for collecting information on patient care [
      • McNeill M.
      • Noyek S.
      • Engeda E.
      • Fayed N.
      Assessing the engagement of children and families in selecting patient-reported outcomes (PROs) and developing their measures: a systematic review.
      ]. PROMs can measure patients’ health status and the impact of a disease or treatment, including patient symptoms, functional status, quality of life, and health-related quality of life (HRQOL) [
      • Bull C.
      • Byrnes J.
      • Hettiarachchi R.
      • Downes M.
      A systematic review of the validity and reliability of patient-reported experience measures.
      ,
      • Bele S.
      • Chugh A.
      • Mohamed B.
      • Teela L.
      • Haverman L.
      • Santana M.J.
      Patient-Reported Outcome Measures in Routine Pediatric Clinical Care: A Systematic Review.
      ]. PREMs measure patients' perception of their experience with the healthcare received [
      • Bull C.
      • Byrnes J.
      • Hettiarachchi R.
      • Downes M.
      A systematic review of the validity and reliability of patient-reported experience measures.
      ]. The use of PROMs and PREMs has been shown to lead to shared decision-making, improved communication, and detection of overlooked problems, ensuring better and individualized care [
      • Bloemeke J.
      • Witt S.
      • Bullinger M.
      • Dingemann J.
      • Dellenmark-Blom M.
      • Quitmann J.
      Health-Related Quality of Life Assessment in Children and their Families: Aspects of Importance to the Pediatric Surgeon.
      ]. These instruments can also influence healthcare interventions, resource allocation, and policymaking [
      • McNeill M.
      • Noyek S.
      • Engeda E.
      • Fayed N.
      Assessing the engagement of children and families in selecting patient-reported outcomes (PROs) and developing their measures: a systematic review.
      ,
      • Bloemeke J.
      • Witt S.
      • Bullinger M.
      • Dingemann J.
      • Dellenmark-Blom M.
      • Quitmann J.
      Health-Related Quality of Life Assessment in Children and their Families: Aspects of Importance to the Pediatric Surgeon.
      ,
      • Solans M.
      • Pane S.
      • Estrada M.-D.
      • Serra-Sutton V.
      • Berra S.
      • Herdman M.
      • et al.
      Health-related quality of life measurement in children and adolescents: a systematic review of generic and disease-specific instruments.
      ]. PROMs and PREMs are complementary tools and should be used together to capture a complete patient-centered journey [
      • de Bienassis K.
      • Kristensen S.
      • Hewlett E.
      • Roe D.
      • Mainz J.
      • Klazinga N.
      Measuring patient voice matters: setting the scene for patient-reported indicators.
      ].
      A PREM exists to capture “what” happened during an episode of care and “how” it happened from the patient's perspective [
      • Bull C.
      • Byrnes J.
      • Hettiarachchi R.
      • Downes M.
      A systematic review of the validity and reliability of patient-reported experience measures.
      ]. PREMs cover domains like communication with staff, access to information, care received, physical and emotional support, shared decision-making, and consideration of the hospital environment [
      • de Bienassis K.
      • Kristensen S.
      • Hewlett E.
      • Roe D.
      • Mainz J.
      • Klazinga N.
      Measuring patient voice matters: setting the scene for patient-reported indicators.
      ]. Despite PREMs and satisfaction measures being used interchangeably, they are not the same. While PREMs report more tangible patient experiences [
      • Kingsley C.
      • Patel S.
      Patient-reported outcome measures and patient-reported experience measures.
      ], satisfaction surveys are highly subjective and indicate if patients' expectations were met or not [
      • Bull C.
      • Byrnes J.
      • Hettiarachchi R.
      • Downes M.
      A systematic review of the validity and reliability of patient-reported experience measures.
      ]. Another confusion is the use of PROMs to assess patients' satisfaction with treatment and treatment preferences. These outcomes represent a distinct measurement construct and should not be confused [
      • McKenna S.P.
      Measuring patient-reported outcomes: moving beyond misplaced common sense to hard science.
      ].
      Although PROMs are increasingly used in pediatric surgery [
      • Besner A.-S.
      • Ferreira J.L.
      • Ow N.
      • Gaffar R.
      • Guadagno E.
      • Emil S.
      • et al.
      Patient-reported outcome measures in pediatric surgery - A systematic review.
      ], the use of PREMs is much less frequent, and most of the literature comes from adult experiences, with very few PREMs developed or completed by children [
      • Wray J.
      • Hobden S.
      • Knibbs S.
      • Oldham G.
      Hearing the voices of children and young people to develop and test a patient-reported experience measure in a specialist paediatric setting.
      ,
      • Gore C.
      • Griffin R.
      • Rothenberg T.
      • Tallett A.
      • Hopwood B.
      • Sizmur S.
      • et al.
      New patient-reported experience measure for children with allergic disease: development, validation and results from integrated care.
      ]. Additionally, the sparse publications regarding PREMs in pediatric surgery conflate the concepts of experience and satisfaction [
      • Espinel A.G.
      • Shah R.K.
      • McCormick M.E.
      • Krakovitz P.R.
      • Boss E.F.
      Patient satisfaction in pediatric surgical care: a systematic review.
      ,
      • Calabro K.A.
      • Raval M.V.
      • Rothstein D.H.
      Importance of patient and family satisfaction in perioperative care.
      ], compromising the accuracy of their findings. Thus, little is known about the routine use of ‘true’ PREMs in surgical settings for children, and how often children actually provide information about their own experiences.
      To address misconceptions and increase PREMs awareness in the field, this study systematically reviewed the use of PREMs in pediatric general surgery. The study objectives were to identify the instruments used, assess their characteristics, and identify areas in which the use of PREMs could be improved. We believe that this review can enhance the development of high-quality PREMs and assist surgical teams and researchers in selecting the most promising tools to capture children's and families’ voices.

      1. Methods

      We conducted a systematic review of the published literature to broadly investigate patient experience as a process measure in pediatric surgery.
      The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines and checklist for conducting systematic reviews were used [
      • Liberati A.
      • Altman D.G.
      • Tetzlaff J.
      • Mulrow C.
      • Gøtzsche P.C.
      • Ioannidis J.P.A.
      • et al.
      The PRISMA statement for reporting systematic reviews and meta-analyses of studies that evaluate healthcare interventions: explanation and elaboration.
      ], and the review was registered with the National Institute for Health Research’s PROSPERO website (CRD42022324146) [

      PROSPERO n.d. https://www.crd.york.ac.uk/prospero/(accessed May 28, 2022).

      ]. The search strategy was developed by a senior medical librarian (EG) and the following databases were searched from the inception of each database until January 12, 2022: Medline (Ovid), Embase (Ovid), Cochrane (Wiley), CINAHL (Ebsco), Global Health (Ovid), Global Index Medicus (WHO), Africa-Wide Information (Ebsco), and Web of Science (Clarivate Analytics). Variations in terms that relate to key concepts, found in the text words of the title, abstract or keyword fields, and relevant subject headings were adopted to retrieve articles looking at patient or family satisfaction and experience measures related to surgery in the pediatric population, with no language restrictions. Reference lists of included studies were reviewed and an additional search for gray literature was also performed.
      Translation of articles in foreign languages was undertaken by members of the research team as needed. The full search strategy and the PRISMA checklist can be found in the Supplementary material. The PRISMA-S extension was used for reporting and is included in the Supplementary material.
      References found were imported into EndNote X9, where duplicates were removed. Records were imported into the online platform Rayyan[
      • Ouzzani M.
      • Hammady H.
      • Fedorowicz Z.
      • Elmagarmid A.
      Rayyan—a web and mobile app for systematic reviews.
      ] to perform the screening. The initial title and abstract screening as well as the full-text screening were completed by two independent reviewers (JF & PP), with a third reviewer (DP) resolving any discrepancies. The primary reasons for study exclusion were documented in an Excel spreadsheet.

      1.1 Inclusion and Exclusion Criteria

      Studies were included regardless of study design if they used a questionnaire or quantitative assessment to evaluate the experience (or experience and satisfaction together) from the patient’s and/or family’s perspective, and the sample included children aged from 0 to 18 years who underwent a surgical procedure within the specialty of pediatric surgery. Studies that had mixed populations were only included if children’s data were analyzed separately from that of the adult data. Studies assessing parental experience (parents of children who underwent general pediatric surgery) were also included.
      Studies were excluded if they reported only satisfaction or outcomes, but not experience; assessments from physicians or other professionals; conditions treated medically rather than surgically, and other surgical specialties besides pediatric surgery. We also excluded studies focused solely on PREMs development, pilot testing, language translation, and measure validation, since the focus of our search was to assess the PREMs actually used in pediatric surgery. Lastly, qualitative studies that did not use any questionnaire or PREM were excluded.

      1.2 Data Extraction and Analysis

      Data were collected by two reviewers (JF & PP) and compiled in an Excel spreadsheet. The following data were extracted from all studies: year of publication, country of origin, study design, condition studied, instruments used, and their characteristics. To analyze the content of each PREM, we collected information about the instrument type, number of items, domains covered, type of respondent (parent and/or child), survey administration method, and instrument psychometric properties. We verified the instruments’ validation status based on evidence found in the literature [
      • Varni J.W.
      • Seid M.
      • Kurtin P.S.
      PedsQLTM 4.0: Reliability and Validity of the Pediatric Quality of Life InventoryTM Version 4.0 Generic Core Scales in Healthy and Patient Populations.
      ]. Modified previously validated questionnaires or those which were designed ad hoc for specific studies were considered not validated and were classified as “in-house” questionnaires. Since many studies used patient experience and satisfaction interchangeably, we also classified the included questionnaires into three categories.
      • Experience measures which only included experience questions (PREMs)
      • Experience measures which also included satisfaction questions
      • Satisfaction measures which also included experience questions

      1.3 Quality Assessment

      The risk of bias assessment was undertaken by two independent reviewers (JF & PP). The quality of the included studies was appraised using the Mixed Methods Appraisal Tool (MMAT) [

      Hong QN, Pluye P, Fàbregues S, Bartlett G, Boardman F, Cargo M, et al. MIXED METHODS APPRAISAL TOOL (MMAT) VERSION française 2018. Https://content.iospress.com › Articles › efi180221https://content.iospress.com › Articles › efi180221 n.d.

      ], a tool designed for the appraisal of systematic mixed study reviews. The MMAT allows the appraisal of the most common types of study methodologies and designs, including qualitative research, randomized controlled trials, non-randomized studies, quantitative descriptive studies, and mixed methods studies [

      Hong QN, Pluye P, Fàbregues S, Bartlett G, Boardman F, Cargo M, et al. MIXED METHODS APPRAISAL TOOL (MMAT) VERSION française 2018. Https://content.iospress.com › Articles › efi180221https://content.iospress.com › Articles › efi180221 n.d.

      ].

      2. Results

      The initial search yielded 2761 results. After duplicate removal, 2331 titles and abstracts and an additional 302 references from systematic reviews were included for screening. Out of 2633, 51 studies were included for the full-text review, with 15 meeting the inclusion criteria for final data extraction (see Figure 1, PRISMA flow diagram). Table 1 displays all included articles and their characteristics based on author, year, country of origin, study design and objectives, condition studied, and the instrument used.
      Figure 1
      Figure 1PRISMA Flow Diagram. From: Page MJ, McKenzie JE, Bossuyt PM, Boutron I, Hoffmann TC, Mulrow CD, et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ 2021;372:n71. https://doi.org/10.1136/bmj.n71. For more information, visit:http://www.prisma-statement.org/
      Table 1Included Articles.
      Author and yearCountry of originStudy designStudy aimCondition studied/surgical intervention performedInstrument
      Barnett, et. al. 2012 [
      • Barnett S.J.
      • Frischer J.S.
      • Gaskey J.A.
      • Ryckman F.C.
      • von Allmen D.
      Pediatric hernia repair: 1-stop shopping.
      ]
      USACohort studyAssess if patients can be evaluated in an outpatient clinical setting, have their diagnosis confirmed, and undergo the operation on the same dayUmbilical, epigastric, or inguinal herniasIn-house questionnaire
      Pederiva, et. al. 2018 [
      • Pederiva F.
      • Khalil B.
      • Morabito A.
      • Wood S.J.
      Impact of short bowel syndrome on quality of life and family: The patient’s perspective.
      ]
      UKCohort studyEvaluate the quality of life and family impact in patients with Small Bowel SyndromeSmall bowel SyndromePedsQL™ Healthcare Satisfaction Generic Module

      Parent Report
      Minneci, et. al 2019 [
      • Minneci P.C.
      • Hade E.M.
      • Lawrence A.E.
      • Saito J.M.
      • Mak G.Z.
      • Hirschl R.B.
      • et al.
      Multi-institutional trial of non-operative management and surgery for uncomplicated appendicitis in children: Design and rationale.
      ]
      USANon-RCTEvaluate the effectiveness of non-operative management of uncomplicated pediatric appendicitisAppendicitisPedsQL™ Healthcare Satisfaction Generic Module Parent Report
      Minneci, et. al 2019 [
      • Minneci P.C.
      • Cooper J.N.
      • Leonhart K.
      • Nacion K.
      • Sulkowski J.
      • Porter K.
      • et al.
      Effects of a Patient Activation Tool on Decision Making Between Surgery and Nonoperative Management for Pediatric Appendicitis: A Randomized Clinical Trial.
      ]
      USARandomized clinical trialEvaluate whether a patient activation tool (PAT) can improve decision-making and patient-centered outcomes among pediatric patients and their caregivers who choose between surgery and nonoperative management for their child’s appendicitisAppendicitisPedsQL™ Healthcare Satisfaction Generic Module Parent Report
      Kassmann, et. al 2012 [
      • Kassmann B.P.
      • Docherty S.L.
      • Rice H.E.
      • Bailey Jr., D.E.
      • Schweitzer M.
      Telephone follow-up for pediatric ambulatory surgery: parent and provider satisfaction.
      ]
      USACase-controlDescribe the use of telephone follow-up in a pediatric general surgical practice for children recovering from ambulatory surgical proceduresInguinal hernia, biopsy, gastrostomy, circumcision, appendectomy, splenectomy, cholecystectomyIn-house questionnaire
      Downs, et. al 2014 [
      • Downs J.
      • Wong K.
      • Ravikumara M.
      • Ellaway C.
      • Elliott E.J.
      • Christodoulou J.
      • et al.
      Experience of gastrostomy using a quality care framework: the example of rett syndrome.
      ]
      AustraliaCase-controlExplore the caregiver's satisfaction or gastrostomy surgical experience in children with rett's syndromeGastrostomyIn-house questionnaire
      Karisalmi, et. al 2020 [
      • Karisalmi N.
      • Mäenpää K.
      • Kaipio J.
      • Lahdenne P.
      Measuring patient experiences in a Children’s hospital with a medical clowning intervention: a case-control study.
      ]
      FinlandCase-controlMeasure experiences of children and their parents during day-surgery in hospital settingDay-Surgery (unspecified) pre-operative cannulation procedureIn-house questionnaire
      Mahmoud, et. al 2021 [
      • Mahmoud M.A.
      • Daboos M.
      • Gouda S.
      • Othman A.
      • Abdelmaboud M.
      • Hussein M.E.
      • et al.
      Telemedicine (virtual clinic) effectively delivers the required healthcare service for pediatric ambulatory surgical patients during the current era of COVID-19 pandemic: A mixed descriptive study.
      ]
      Saudi ArabiaCross-sectionalEvaluate the effectiveness of telemedicine (virtual clinic) and assess if it can help overcome the social barriers imposed by covid-19Circumcision, inguinal hernia, hydrocele, orchidopexy, umbilical hernia, lipoma, dermoid cyst, lymph node biopsy, thyroglossal duct, pilonidal sinus, polydactyly/syndactylyIn-house questionnaire
      Criss, et. al 2018 [
      • Criss C.N.
      • Brown J.
      • Gish J.S.
      • Gadepalli S.K.
      • Hirschl R.B.
      Clinic-day surgery for children: a patient and staff perspective.
      ]
      USACross-sectionalEvaluate the patient and staff satisfaction following the implementation of same clinic day surgery programAbdominal hernias, toenail excision, gastrocutaneous fistula repair, pilonidal cyst excision/drainage, circumcision and/or chordae release, incision, and drainage of abscess, and cyst, skin tag, lipoma, and keloid excisionIn-house questionnaire
      Dreuning, et. al 2021 [
      • Dreuning K.M.A.
      • Derikx J.P.M.
      • Ouali A.
      • Janssen L.M.J.
      • van Tulder M.W.
      • Twisk J.W.R.
      • et al.
      One-stop surgery: An innovation to limit hospital visits in children.
      ]
      NetherlandsNon-RCTEvaluate the efficiency, (cost-)effectiveness, and family satisfaction of one-stop inguinal hernia surgery compared with usual careInguinal herniaModified version of the PedsQL™ Healthcare Satisfaction Hematology/Oncology Module
      Koulack et. al, 1993 [
      • Koulack J.
      • Fitzgerald P.
      • Gillis D.A.
      • Giacomantonio M.
      Routine inguinal hernia repair in the pediatric population: is office follow-up necessary?.
      ]
      CanadaCross-sectionalTo determine the perceived necessity for the follow-up visitInguinal HerniaIn-house questionnaire
      Mariani et. al, 2018 [
      • Mariani A.
      • Peycelon M.
      • Clermidi P.
      • Bellon M.
      • Skhiri A.
      • Bonnard A.
      Safety Assessment for Thoracoscopic Day Case Surgery in Children with Congenital Pulmonary Malformation.
      ]
      FranceCross-sectionalInvestigate the safety of outpatient thoracoscopy and to assess parental opinions on the advantages and disadvantages of a pediatric thoracoscopy outpatient settingCongenital Pulmonary MalformationIn-house questionnaire
      Minneci, et. al, 2020 [
      • Minneci P.C.
      • Hade E.M.
      • Lawrence A.E.
      • Sebastião Y.V.
      • Saito J.M.
      • Mak G.Z.
      • et al.
      Association of Nonoperative Management Using Antibiotic Therapy vs Laparoscopic Appendectomy With Treatment Success and Disability Days in Children With Uncomplicated Appendicitis.
      ]
      USANon-RCTDetermine success rate of nonoperative management and compare differences in treatment-related disability, satisfaction, health-related quality of life, and complications between nonoperative management and surgery in children with uncomplicated appendicitisAppendicitisPedsQL™ Healthcare Satisfaction Generic Module Parent Report
      Minneci et. al, 2014 [
      • Minneci P.C.
      • Sulkowski J.P.
      • Nacion K.M.
      • Mahida J.B.
      • Cooper J.N.
      • Moss R.L.
      • et al.
      Feasibility of a nonoperative management strategy for uncomplicated acute appendicitis in children.
      ]
      USANon-RCTInvestigate the feasibility of non-operative management of uncomplicated acute appendicitis in childrenAppendicitisPedsQL™ Healthcare Satisfaction Generic

      Module

      Parent Report
      Olson et. al, 2018 [
      • Olson J.K.
      • Deming L.A.
      • King D.R.
      • Rager T.M.
      • Gartner S.
      • Huibregtse N.
      • et al.
      Single visit surgery for pediatric ambulatory surgical procedures: a satisfaction and cost analysis.
      ]
      USACohort StudyDetermine family satisfaction, cost savings to families, and institutional financial feasibility of SVSUmbilical hernia repair, inguinal hernia repair, excision of soft tissue/skin lesions, orchidopexy, and circumcisionPedsQL™ Healthcare Satisfaction Generic Module Parent Report and in house questionnaire
      USA- United States of America; UK- United Kingdom; RCT-randomized control trial, PedsQL™- Pediatric Quality of Life Inventory; SVS- same visit surgery.
      The number of studies published each year progressively increased between 1993 and 2021. As shown in Figure 2, most of the studies originated in the United States (USA) (8), and the remainder came from high-income countries (HICs) as defined by the World Bank, with most questionnaires available in English only. Regarding study design, there were four non-randomized controlled trials, four cross-sectional studies, three cohort studies, three case-control studies, and one randomized control trial.
      Figure 2
      Figure 2The countries are colored according to the number of studies published. Grey: no studies identified, Skyblue: 1 study, Dark blue: 8 studies.
      Ten distinct questionnaires were identified in the included papers, nine of which were created for the specific study and classified as non-validated, in-house, questionnaires. The remaining questionnaire, used in six studies, was the Pediatric Quality of Life Inventory (PedsQL™) Healthcare Satisfaction Generic Module–Parent Report, a validated generic satisfaction tool with patient experience domains[
      • Varni J.W.
      • Seid M.
      • Kurtin P.S.
      PedsQLTM 4.0: Reliability and Validity of the Pediatric Quality of Life InventoryTM Version 4.0 Generic Core Scales in Healthy and Patient Populations.
      ]. With the exception of the PedsQL™ Healthcare Satisfaction Generic Module, no information was available about the psychometric properties of any of the other questionnaires, and only one questionnaire [
      • Karisalmi N.
      • Mäenpää K.
      • Kaipio J.
      • Lahdenne P.
      Measuring patient experiences in a Children’s hospital with a medical clowning intervention: a case-control study.
      ] was piloted before use. Out of the 10 instruments found, only two had patient/parent involvement in their content creation, PedsQL™ Healthcare Satisfaction Generic Module, and the questionnaire from reference [
      • Downs J.
      • Wong K.
      • Ravikumara M.
      • Ellaway C.
      • Elliott E.J.
      • Christodoulou J.
      • et al.
      Experience of gastrostomy using a quality care framework: the example of rett syndrome.
      ]. The remaining tools had no mention of patient/parent involvement, with descriptions of items being generated based on literature review and input from clinical experts. Table 2 displays the questionnaires found and their characteristics. Most of the studies (12/15) used the questionnaire only with parents [
      • Downs J.
      • Wong K.
      • Ravikumara M.
      • Ellaway C.
      • Elliott E.J.
      • Christodoulou J.
      • et al.
      Experience of gastrostomy using a quality care framework: the example of rett syndrome.
      ,
      • Barnett S.J.
      • Frischer J.S.
      • Gaskey J.A.
      • Ryckman F.C.
      • von Allmen D.
      Pediatric hernia repair: 1-stop shopping.
      ,
      • Pederiva F.
      • Khalil B.
      • Morabito A.
      • Wood S.J.
      Impact of short bowel syndrome on quality of life and family: The patient’s perspective.
      ,
      • Minneci P.C.
      • Hade E.M.
      • Lawrence A.E.
      • Saito J.M.
      • Mak G.Z.
      • Hirschl R.B.
      • et al.
      Multi-institutional trial of non-operative management and surgery for uncomplicated appendicitis in children: Design and rationale.
      ,
      • Minneci P.C.
      • Cooper J.N.
      • Leonhart K.
      • Nacion K.
      • Sulkowski J.
      • Porter K.
      • et al.
      Effects of a Patient Activation Tool on Decision Making Between Surgery and Nonoperative Management for Pediatric Appendicitis: A Randomized Clinical Trial.
      ,
      • Kassmann B.P.
      • Docherty S.L.
      • Rice H.E.
      • Bailey Jr., D.E.
      • Schweitzer M.
      Telephone follow-up for pediatric ambulatory surgery: parent and provider satisfaction.
      ,
      • Dreuning K.M.A.
      • Derikx J.P.M.
      • Ouali A.
      • Janssen L.M.J.
      • van Tulder M.W.
      • Twisk J.W.R.
      • et al.
      One-stop surgery: An innovation to limit hospital visits in children.
      ,
      • Koulack J.
      • Fitzgerald P.
      • Gillis D.A.
      • Giacomantonio M.
      Routine inguinal hernia repair in the pediatric population: is office follow-up necessary?.
      ,
      • Mariani A.
      • Peycelon M.
      • Clermidi P.
      • Bellon M.
      • Skhiri A.
      • Bonnard A.
      Safety Assessment for Thoracoscopic Day Case Surgery in Children with Congenital Pulmonary Malformation.
      ,
      • Minneci P.C.
      • Hade E.M.
      • Lawrence A.E.
      • Sebastião Y.V.
      • Saito J.M.
      • Mak G.Z.
      • et al.
      Association of Nonoperative Management Using Antibiotic Therapy vs Laparoscopic Appendectomy With Treatment Success and Disability Days in Children With Uncomplicated Appendicitis.
      ,
      • Minneci P.C.
      • Sulkowski J.P.
      • Nacion K.M.
      • Mahida J.B.
      • Cooper J.N.
      • Moss R.L.
      • et al.
      Feasibility of a nonoperative management strategy for uncomplicated acute appendicitis in children.
      ,
      • Olson J.K.
      • Deming L.A.
      • King D.R.
      • Rager T.M.
      • Gartner S.
      • Huibregtse N.
      • et al.
      Single visit surgery for pediatric ambulatory surgical procedures: a satisfaction and cost analysis.
      ], while three studies assessed both child and parental experience [
      • Karisalmi N.
      • Mäenpää K.
      • Kaipio J.
      • Lahdenne P.
      Measuring patient experiences in a Children’s hospital with a medical clowning intervention: a case-control study.
      ,
      • Mahmoud M.A.
      • Daboos M.
      • Gouda S.
      • Othman A.
      • Abdelmaboud M.
      • Hussein M.E.
      • et al.
      Telemedicine (virtual clinic) effectively delivers the required healthcare service for pediatric ambulatory surgical patients during the current era of COVID-19 pandemic: A mixed descriptive study.
      ,
      • Criss C.N.
      • Brown J.
      • Gish J.S.
      • Gadepalli S.K.
      • Hirschl R.B.
      Clinic-day surgery for children: a patient and staff perspective.
      ]. Of all the questionnaires, six were obvious satisfaction tools including experience questions, PedsQL™ Healthcare Satisfaction Generic Module, and the questionnaire from references [
      • Downs J.
      • Wong K.
      • Ravikumara M.
      • Ellaway C.
      • Elliott E.J.
      • Christodoulou J.
      • et al.
      Experience of gastrostomy using a quality care framework: the example of rett syndrome.
      ,
      • Barnett S.J.
      • Frischer J.S.
      • Gaskey J.A.
      • Ryckman F.C.
      • von Allmen D.
      Pediatric hernia repair: 1-stop shopping.
      ,
      • Dreuning K.M.A.
      • Derikx J.P.M.
      • Ouali A.
      • Janssen L.M.J.
      • van Tulder M.W.
      • Twisk J.W.R.
      • et al.
      One-stop surgery: An innovation to limit hospital visits in children.
      ,
      • Koulack J.
      • Fitzgerald P.
      • Gillis D.A.
      • Giacomantonio M.
      Routine inguinal hernia repair in the pediatric population: is office follow-up necessary?.
      ,
      • Criss C.N.
      • Brown J.
      • Gish J.S.
      • Gadepalli S.K.
      • Hirschl R.B.
      Clinic-day surgery for children: a patient and staff perspective.
      ]. Three included a majority of experience questions combined with satisfaction questions [
      • Kassmann B.P.
      • Docherty S.L.
      • Rice H.E.
      • Bailey Jr., D.E.
      • Schweitzer M.
      Telephone follow-up for pediatric ambulatory surgery: parent and provider satisfaction.
      ,
      • Mariani A.
      • Peycelon M.
      • Clermidi P.
      • Bellon M.
      • Skhiri A.
      • Bonnard A.
      Safety Assessment for Thoracoscopic Day Case Surgery in Children with Congenital Pulmonary Malformation.
      ,
      • Mahmoud M.A.
      • Daboos M.
      • Gouda S.
      • Othman A.
      • Abdelmaboud M.
      • Hussein M.E.
      • et al.
      Telemedicine (virtual clinic) effectively delivers the required healthcare service for pediatric ambulatory surgical patients during the current era of COVID-19 pandemic: A mixed descriptive study.
      ], and one was a combination of patient-reported outcomes and experience questions [
      • Karisalmi N.
      • Mäenpää K.
      • Kaipio J.
      • Lahdenne P.
      Measuring patient experiences in a Children’s hospital with a medical clowning intervention: a case-control study.
      ]. No stand-alone PREM was found in the included studies.
      Table 2Instruments.
      ReferenceInstrumentValidationPsychometric propertiesRespondentDomainsOnly experience questions (True PREM)Mostly Satisfaction questions with experience questionsMostly Experience questions with satisfaction questions
      [
      • Barnett S.J.
      • Frischer J.S.
      • Gaskey J.A.
      • Ryckman F.C.
      • von Allmen D.
      Pediatric hernia repair: 1-stop shopping.
      ]
      In-house questionnaireNoNoParentScheduling process information, care and attention, conveniencexx
      [
      • Pederiva F.
      • Khalil B.
      • Morabito A.
      • Wood S.J.
      Impact of short bowel syndrome on quality of life and family: The patient’s perspective.
      ,
      • Minneci P.C.
      • Hade E.M.
      • Lawrence A.E.
      • Saito J.M.
      • Mak G.Z.
      • Hirschl R.B.
      • et al.
      Multi-institutional trial of non-operative management and surgery for uncomplicated appendicitis in children: Design and rationale.
      ,
      • Minneci P.C.
      • Cooper J.N.
      • Leonhart K.
      • Nacion K.
      • Sulkowski J.
      • Porter K.
      • et al.
      Effects of a Patient Activation Tool on Decision Making Between Surgery and Nonoperative Management for Pediatric Appendicitis: A Randomized Clinical Trial.
      ,
      • Minneci P.C.
      • Hade E.M.
      • Lawrence A.E.
      • Sebastião Y.V.
      • Saito J.M.
      • Mak G.Z.
      • et al.
      Association of Nonoperative Management Using Antibiotic Therapy vs Laparoscopic Appendectomy With Treatment Success and Disability Days in Children With Uncomplicated Appendicitis.
      ,
      • Minneci P.C.
      • Sulkowski J.P.
      • Nacion K.M.
      • Mahida J.B.
      • Cooper J.N.
      • Moss R.L.
      • et al.
      Feasibility of a nonoperative management strategy for uncomplicated acute appendicitis in children.
      ,
      • Olson J.K.
      • Deming L.A.
      • King D.R.
      • Rager T.M.
      • Gartner S.
      • Huibregtse N.
      • et al.
      Single visit surgery for pediatric ambulatory surgical procedures: a satisfaction and cost analysis.
      ]
      PedsQL Healthcare Satisfaction Generic ModuleYesYesParentInformation, inclusion of family, communication, technical skills, emotional needs, and overall satisfactionxx
      [
      • Kassmann B.P.
      • Docherty S.L.
      • Rice H.E.
      • Bailey Jr., D.E.
      • Schweitzer M.
      Telephone follow-up for pediatric ambulatory surgery: parent and provider satisfaction.
      ]
      In-house questionnaireNoNoParentEmotional support, role responsibilities, information needsxx
      [
      • Downs J.
      • Wong K.
      • Ravikumara M.
      • Ellaway C.
      • Elliott E.J.
      • Christodoulou J.
      • et al.
      Experience of gastrostomy using a quality care framework: the example of rett syndrome.
      ]
      In-house questionnaireNoPatient involvement in questions developmentParentSpecific aspects of hospital processes, overall satisfaction, and functional outcomes following

      surgery
      xx
      [
      • Karisalmi N.
      • Mäenpää K.
      • Kaipio J.
      • Lahdenne P.
      Measuring patient experiences in a Children’s hospital with a medical clowning intervention: a case-control study.
      ]
      In-house questionnaireNoDigital tool was pilotedChild and ParentSurvey of children - feelings, pain, aspect of hospital stay and feedback Questions for parents - information, emotions and expectations, fluency of the procedure and fluency of the hospital dayxxx
      [
      • Mahmoud M.A.
      • Daboos M.
      • Gouda S.
      • Othman A.
      • Abdelmaboud M.
      • Hussein M.E.
      • et al.
      Telemedicine (virtual clinic) effectively delivers the required healthcare service for pediatric ambulatory surgical patients during the current era of COVID-19 pandemic: A mixed descriptive study.
      ]
      In-house questionnaireNoNoChild and ParentGeneral satisfaction, information, communication, fluency of process and hospital stayxx
      [
      • Criss C.N.
      • Brown J.
      • Gish J.S.
      • Gadepalli S.K.
      • Hirschl R.B.
      Clinic-day surgery for children: a patient and staff perspective.
      ]
      In-house questionnaireNoNoChild and ParentInformation, emotional needs, fluency of hospital stay and process, convenience of stayxx
      [
      • Dreuning K.M.A.
      • Derikx J.P.M.
      • Ouali A.
      • Janssen L.M.J.
      • van Tulder M.W.
      • Twisk J.W.R.
      • et al.
      One-stop surgery: An innovation to limit hospital visits in children.
      ]
      Modified version of the Dutch Pediatric Quality of Life Healthcare Satisfaction ModuleNoNoParentInformation, inclusion of family, communication, technical skills, emotional needs, and overall satisfactionxx
      [
      • Koulack J.
      • Fitzgerald P.
      • Gillis D.A.
      • Giacomantonio M.
      Routine inguinal hernia repair in the pediatric population: is office follow-up necessary?.
      ]
      In-house questionnaireNoNoPerentInformation and communication about followupxx
      [
      • Mariani A.
      • Peycelon M.
      • Clermidi P.
      • Bellon M.
      • Skhiri A.
      • Bonnard A.
      Safety Assessment for Thoracoscopic Day Case Surgery in Children with Congenital Pulmonary Malformation.
      ]
      In-house questionnaireNoNoParentAspects of hospital stay, respect of the dosage and administration schedule, pain management,

      and the recovery post-surgery at home
      xx
      Nine articles focused on a single surgical intervention, while six included multiple procedures. The most frequent surgical procedures evaluated were abdominal hernia repair [
      • Barnett S.J.
      • Frischer J.S.
      • Gaskey J.A.
      • Ryckman F.C.
      • von Allmen D.
      Pediatric hernia repair: 1-stop shopping.
      ,
      • Kassmann B.P.
      • Docherty S.L.
      • Rice H.E.
      • Bailey Jr., D.E.
      • Schweitzer M.
      Telephone follow-up for pediatric ambulatory surgery: parent and provider satisfaction.
      ,
      • Dreuning K.M.A.
      • Derikx J.P.M.
      • Ouali A.
      • Janssen L.M.J.
      • van Tulder M.W.
      • Twisk J.W.R.
      • et al.
      One-stop surgery: An innovation to limit hospital visits in children.
      ,
      • Koulack J.
      • Fitzgerald P.
      • Gillis D.A.
      • Giacomantonio M.
      Routine inguinal hernia repair in the pediatric population: is office follow-up necessary?.
      ,
      • Olson J.K.
      • Deming L.A.
      • King D.R.
      • Rager T.M.
      • Gartner S.
      • Huibregtse N.
      • et al.
      Single visit surgery for pediatric ambulatory surgical procedures: a satisfaction and cost analysis.
      ,
      • Mahmoud M.A.
      • Daboos M.
      • Gouda S.
      • Othman A.
      • Abdelmaboud M.
      • Hussein M.E.
      • et al.
      Telemedicine (virtual clinic) effectively delivers the required healthcare service for pediatric ambulatory surgical patients during the current era of COVID-19 pandemic: A mixed descriptive study.
      ,
      • Criss C.N.
      • Brown J.
      • Gish J.S.
      • Gadepalli S.K.
      • Hirschl R.B.
      Clinic-day surgery for children: a patient and staff perspective.
      ], appendectomy [
      • Minneci P.C.
      • Hade E.M.
      • Lawrence A.E.
      • Saito J.M.
      • Mak G.Z.
      • Hirschl R.B.
      • et al.
      Multi-institutional trial of non-operative management and surgery for uncomplicated appendicitis in children: Design and rationale.
      ,
      • Minneci P.C.
      • Cooper J.N.
      • Leonhart K.
      • Nacion K.
      • Sulkowski J.
      • Porter K.
      • et al.
      Effects of a Patient Activation Tool on Decision Making Between Surgery and Nonoperative Management for Pediatric Appendicitis: A Randomized Clinical Trial.
      ,
      • Kassmann B.P.
      • Docherty S.L.
      • Rice H.E.
      • Bailey Jr., D.E.
      • Schweitzer M.
      Telephone follow-up for pediatric ambulatory surgery: parent and provider satisfaction.
      ,
      • Minneci P.C.
      • Hade E.M.
      • Lawrence A.E.
      • Sebastião Y.V.
      • Saito J.M.
      • Mak G.Z.
      • et al.
      Association of Nonoperative Management Using Antibiotic Therapy vs Laparoscopic Appendectomy With Treatment Success and Disability Days in Children With Uncomplicated Appendicitis.
      ,
      • Minneci P.C.
      • Sulkowski J.P.
      • Nacion K.M.
      • Mahida J.B.
      • Cooper J.N.
      • Moss R.L.
      • et al.
      Feasibility of a nonoperative management strategy for uncomplicated acute appendicitis in children.
      ], and circumcision [
      • Kassmann B.P.
      • Docherty S.L.
      • Rice H.E.
      • Bailey Jr., D.E.
      • Schweitzer M.
      Telephone follow-up for pediatric ambulatory surgery: parent and provider satisfaction.
      ,
      • Olson J.K.
      • Deming L.A.
      • King D.R.
      • Rager T.M.
      • Gartner S.
      • Huibregtse N.
      • et al.
      Single visit surgery for pediatric ambulatory surgical procedures: a satisfaction and cost analysis.
      ,
      • Mahmoud M.A.
      • Daboos M.
      • Gouda S.
      • Othman A.
      • Abdelmaboud M.
      • Hussein M.E.
      • et al.
      Telemedicine (virtual clinic) effectively delivers the required healthcare service for pediatric ambulatory surgical patients during the current era of COVID-19 pandemic: A mixed descriptive study.
      ,
      • Criss C.N.
      • Brown J.
      • Gish J.S.
      • Gadepalli S.K.
      • Hirschl R.B.
      Clinic-day surgery for children: a patient and staff perspective.
      ], followed by excision of cystic soft tissue lesions [
      • Olson J.K.
      • Deming L.A.
      • King D.R.
      • Rager T.M.
      • Gartner S.
      • Huibregtse N.
      • et al.
      Single visit surgery for pediatric ambulatory surgical procedures: a satisfaction and cost analysis.
      ,
      • Mahmoud M.A.
      • Daboos M.
      • Gouda S.
      • Othman A.
      • Abdelmaboud M.
      • Hussein M.E.
      • et al.
      Telemedicine (virtual clinic) effectively delivers the required healthcare service for pediatric ambulatory surgical patients during the current era of COVID-19 pandemic: A mixed descriptive study.
      ,
      • Criss C.N.
      • Brown J.
      • Gish J.S.
      • Gadepalli S.K.
      • Hirschl R.B.
      Clinic-day surgery for children: a patient and staff perspective.
      ] orchidopexy [
      • Olson J.K.
      • Deming L.A.
      • King D.R.
      • Rager T.M.
      • Gartner S.
      • Huibregtse N.
      • et al.
      Single visit surgery for pediatric ambulatory surgical procedures: a satisfaction and cost analysis.
      ,
      • Mahmoud M.A.
      • Daboos M.
      • Gouda S.
      • Othman A.
      • Abdelmaboud M.
      • Hussein M.E.
      • et al.
      Telemedicine (virtual clinic) effectively delivers the required healthcare service for pediatric ambulatory surgical patients during the current era of COVID-19 pandemic: A mixed descriptive study.
      ], soft tissue biopsy [
      • Kassmann B.P.
      • Docherty S.L.
      • Rice H.E.
      • Bailey Jr., D.E.
      • Schweitzer M.
      Telephone follow-up for pediatric ambulatory surgery: parent and provider satisfaction.
      ,
      • Mahmoud M.A.
      • Daboos M.
      • Gouda S.
      • Othman A.
      • Abdelmaboud M.
      • Hussein M.E.
      • et al.
      Telemedicine (virtual clinic) effectively delivers the required healthcare service for pediatric ambulatory surgical patients during the current era of COVID-19 pandemic: A mixed descriptive study.
      ], and gastrostomy placement [
      • Downs J.
      • Wong K.
      • Ravikumara M.
      • Ellaway C.
      • Elliott E.J.
      • Christodoulou J.
      • et al.
      Experience of gastrostomy using a quality care framework: the example of rett syndrome.
      ,
      • Kassmann B.P.
      • Docherty S.L.
      • Rice H.E.
      • Bailey Jr., D.E.
      • Schweitzer M.
      Telephone follow-up for pediatric ambulatory surgery: parent and provider satisfaction.
      ] (Figure 3). Only one study [
      • Karisalmi N.
      • Mäenpää K.
      • Kaipio J.
      • Lahdenne P.
      Measuring patient experiences in a Children’s hospital with a medical clowning intervention: a case-control study.
      ] used the questionnaire in both preoperative and postoperative care, while the other 14 studies evaluated participants during the initial postoperative follow-up, mostly by phone [
      • Kassmann B.P.
      • Docherty S.L.
      • Rice H.E.
      • Bailey Jr., D.E.
      • Schweitzer M.
      Telephone follow-up for pediatric ambulatory surgery: parent and provider satisfaction.
      ,
      • Koulack J.
      • Fitzgerald P.
      • Gillis D.A.
      • Giacomantonio M.
      Routine inguinal hernia repair in the pediatric population: is office follow-up necessary?.
      ,
      • Mariani A.
      • Peycelon M.
      • Clermidi P.
      • Bellon M.
      • Skhiri A.
      • Bonnard A.
      Safety Assessment for Thoracoscopic Day Case Surgery in Children with Congenital Pulmonary Malformation.
      ,
      • Olson J.K.
      • Deming L.A.
      • King D.R.
      • Rager T.M.
      • Gartner S.
      • Huibregtse N.
      • et al.
      Single visit surgery for pediatric ambulatory surgical procedures: a satisfaction and cost analysis.
      ,
      • Criss C.N.
      • Brown J.
      • Gish J.S.
      • Gadepalli S.K.
      • Hirschl R.B.
      Clinic-day surgery for children: a patient and staff perspective.
      ], followed by in-person survey [
      • Karisalmi N.
      • Mäenpää K.
      • Kaipio J.
      • Lahdenne P.
      Measuring patient experiences in a Children’s hospital with a medical clowning intervention: a case-control study.
      ,
      • Minneci P.C.
      • Hade E.M.
      • Lawrence A.E.
      • Saito J.M.
      • Mak G.Z.
      • Hirschl R.B.
      • et al.
      Multi-institutional trial of non-operative management and surgery for uncomplicated appendicitis in children: Design and rationale.
      ,
      • Minneci P.C.
      • Cooper J.N.
      • Leonhart K.
      • Nacion K.
      • Sulkowski J.
      • Porter K.
      • et al.
      Effects of a Patient Activation Tool on Decision Making Between Surgery and Nonoperative Management for Pediatric Appendicitis: A Randomized Clinical Trial.
      ], email [
      • Karisalmi N.
      • Mäenpää K.
      • Kaipio J.
      • Lahdenne P.
      Measuring patient experiences in a Children’s hospital with a medical clowning intervention: a case-control study.
      ,
      • Dreuning K.M.A.
      • Derikx J.P.M.
      • Ouali A.
      • Janssen L.M.J.
      • van Tulder M.W.
      • Twisk J.W.R.
      • et al.
      One-stop surgery: An innovation to limit hospital visits in children.
      ,
      • Mahmoud M.A.
      • Daboos M.
      • Gouda S.
      • Othman A.
      • Abdelmaboud M.
      • Hussein M.E.
      • et al.
      Telemedicine (virtual clinic) effectively delivers the required healthcare service for pediatric ambulatory surgical patients during the current era of COVID-19 pandemic: A mixed descriptive study.
      ], and mail [
      • Barnett S.J.
      • Frischer J.S.
      • Gaskey J.A.
      • Ryckman F.C.
      • von Allmen D.
      Pediatric hernia repair: 1-stop shopping.
      ,
      • Pederiva F.
      • Khalil B.
      • Morabito A.
      • Wood S.J.
      Impact of short bowel syndrome on quality of life and family: The patient’s perspective.
      ]. The remaining articles did not mention how their survey was delivered [
      • Downs J.
      • Wong K.
      • Ravikumara M.
      • Ellaway C.
      • Elliott E.J.
      • Christodoulou J.
      • et al.
      Experience of gastrostomy using a quality care framework: the example of rett syndrome.
      ,
      • Minneci P.C.
      • Hade E.M.
      • Lawrence A.E.
      • Sebastião Y.V.
      • Saito J.M.
      • Mak G.Z.
      • et al.
      Association of Nonoperative Management Using Antibiotic Therapy vs Laparoscopic Appendectomy With Treatment Success and Disability Days in Children With Uncomplicated Appendicitis.
      ,
      • Minneci P.C.
      • Sulkowski J.P.
      • Nacion K.M.
      • Mahida J.B.
      • Cooper J.N.
      • Moss R.L.
      • et al.
      Feasibility of a nonoperative management strategy for uncomplicated acute appendicitis in children.
      ].
      Figure 3
      Figure 3Most Frequent Procedures Covered by the Included Questionnaires.
      The number of questions in each questionnaire varied from 3 to 27. All questionnaires were comprised of closed-ended questions with predetermined answers (including multiple-choice format, Likert scales, and ranking), and eight included at least one open question or comment section [
      • Karisalmi N.
      • Mäenpää K.
      • Kaipio J.
      • Lahdenne P.
      Measuring patient experiences in a Children’s hospital with a medical clowning intervention: a case-control study.
      ,
      • Downs J.
      • Wong K.
      • Ravikumara M.
      • Ellaway C.
      • Elliott E.J.
      • Christodoulou J.
      • et al.
      Experience of gastrostomy using a quality care framework: the example of rett syndrome.
      ,
      • Barnett S.J.
      • Frischer J.S.
      • Gaskey J.A.
      • Ryckman F.C.
      • von Allmen D.
      Pediatric hernia repair: 1-stop shopping.
      ,
      • Kassmann B.P.
      • Docherty S.L.
      • Rice H.E.
      • Bailey Jr., D.E.
      • Schweitzer M.
      Telephone follow-up for pediatric ambulatory surgery: parent and provider satisfaction.
      ,
      • Koulack J.
      • Fitzgerald P.
      • Gillis D.A.
      • Giacomantonio M.
      Routine inguinal hernia repair in the pediatric population: is office follow-up necessary?.
      ,
      • Mariani A.
      • Peycelon M.
      • Clermidi P.
      • Bellon M.
      • Skhiri A.
      • Bonnard A.
      Safety Assessment for Thoracoscopic Day Case Surgery in Children with Congenital Pulmonary Malformation.
      ,
      • Mahmoud M.A.
      • Daboos M.
      • Gouda S.
      • Othman A.
      • Abdelmaboud M.
      • Hussein M.E.
      • et al.
      Telemedicine (virtual clinic) effectively delivers the required healthcare service for pediatric ambulatory surgical patients during the current era of COVID-19 pandemic: A mixed descriptive study.
      ,
      • Criss C.N.
      • Brown J.
      • Gish J.S.
      • Gadepalli S.K.
      • Hirschl R.B.
      Clinic-day surgery for children: a patient and staff perspective.
      ]. The domains covered mainly patient information and communication, delivery of care, family inclusion, health professional technical skills, emotional support, hospital setting, and overall satisfaction.

      2.1 Risk of bias

      The risk of bias for each included study is shown in Table 3. Based on the MMAT, the included studies were all of good quality with positive answers to nearly all items. All studies were guided by clear research questions which were answered through the data generated and targeted the designated population. Only two studies had incomplete outcomes [
      • Minneci P.C.
      • Cooper J.N.
      • Leonhart K.
      • Nacion K.
      • Sulkowski J.
      • Porter K.
      • et al.
      Effects of a Patient Activation Tool on Decision Making Between Surgery and Nonoperative Management for Pediatric Appendicitis: A Randomized Clinical Trial.
      ,
      • Koulack J.
      • Fitzgerald P.
      • Gillis D.A.
      • Giacomantonio M.
      Routine inguinal hernia repair in the pediatric population: is office follow-up necessary?.
      ], one being an ongoing study. In two studies, we were not able to assess how confounders were addressed [
      • Barnett S.J.
      • Frischer J.S.
      • Gaskey J.A.
      • Ryckman F.C.
      • von Allmen D.
      Pediatric hernia repair: 1-stop shopping.
      ,
      • Mahmoud M.A.
      • Daboos M.
      • Gouda S.
      • Othman A.
      • Abdelmaboud M.
      • Hussein M.E.
      • et al.
      Telemedicine (virtual clinic) effectively delivers the required healthcare service for pediatric ambulatory surgical patients during the current era of COVID-19 pandemic: A mixed descriptive study.
      ].
      Table 3Risk of Bias Assessment: Mixed Methods Appraisal Tool (MMAT). The red color means "no", the green "yes", the yellow “can not tell” following MMAT predetermined answer.
      Table thumbnail fx1

      1. Discussion

      This review examined PREM usage in pediatric general surgery. Notably, no true PREM was identified in our review, with most questionnaires being in-house instruments developed for specific studies, without psychometric rigor, validation, or patient involvement. The only validated tool found, the PedsQL™ Healthcare Satisfaction Generic Module Parent Report, is, as its name suggests, primarily a satisfaction survey with some patient experience domains [
      • Varni J.W.
      • Seid M.
      • Kurtin P.S.
      PedsQLTM 4.0: Reliability and Validity of the Pediatric Quality of Life InventoryTM Version 4.0 Generic Core Scales in Healthy and Patient Populations.
      ]. Furthermore, the focus of most questionnaires was limited to the parents' experience, with only a few studies evaluating the child's experience.
      The number of publications reporting both patient experience and satisfaction in pediatric surgery has increased in recent years but remains limited, especially when compared to the recent significant increase of PROMs in the field [
      • Besner A.-S.
      • Ferreira J.L.
      • Ow N.
      • Gaffar R.
      • Guadagno E.
      • Emil S.
      • et al.
      Patient-reported outcome measures in pediatric surgery - A systematic review.
      ]. Surgery adds stress and complexity to the relationship between parents and healthcare providers in an environment where multiple teams interact with the family [
      • Espinel A.G.
      • Shah R.K.
      • McCormick M.E.
      • Krakovitz P.R.
      • Boss E.F.
      Patient satisfaction in pediatric surgical care: a systematic review.
      ], making patient and family experience challenging to evaluate. However, omitting PREMs from research studies and routine evaluation excludes children’s and families' voices from clinical and policy decisions [
      • De Rosis S.
      • Cerasuolo D.
      • Nuti S.
      Using patient-reported measures to drive change in healthcare: the experience of the digital, continuous and systematic PREMs observatory in Italy.
      ].
      All included studies were from HICs, and predominantly from the USA. Healthcare systems in these countries are shifting toward a patient-centered care model, responsive to patient and family preferences, needs, and values [
      • de Bienassis K.
      • Kristensen S.
      • Hewlett E.
      • Roe D.
      • Mainz J.
      • Klazinga N.
      Measuring patient voice matters: setting the scene for patient-reported indicators.
      ]. In fact, some health-governing authorities in HICs have fostered guideline development for including PROMs and PREMs in research and clinical consultations [
      • McNeill M.
      • Noyek S.
      • Engeda E.
      • Fayed N.
      Assessing the engagement of children and families in selecting patient-reported outcomes (PROs) and developing their measures: a systematic review.
      ,

      Ishaque S. Adaptation and Validation of an Individualised Paediatric Health-Related Quality of Life Measure (Paediatric Measure Yourself Medical Outcome Profile) and its Evaluation in a Clinical Setting. PhD. The University of Adelaide, 2018.

      ].
      While the merit of using PROMs and PREMs is evident, there is a lack of consensus in selecting the appropriate measures [
      • Besner A.-S.
      • Ferreira J.L.
      • Ow N.
      • Gaffar R.
      • Guadagno E.
      • Emil S.
      • et al.
      Patient-reported outcome measures in pediatric surgery - A systematic review.
      ,
      • Wray J.
      • Hobden S.
      • Knibbs S.
      • Oldham G.
      Hearing the voices of children and young people to develop and test a patient-reported experience measure in a specialist paediatric setting.
      ,
      • Jardine J.
      • Glinianaia S.V.
      • McConachie H.
      • Embleton N.D.
      • Rankin J.
      Self-reported quality of life of young children with conditions from early infancy: a systematic review.
      ]. Choosing an instrument may be deemed by some to be trivial, but measuring patient-reported outcomes and experiences is complex and requires considerable expertise [
      • McKenna S.P.
      Measuring patient-reported outcomes: moving beyond misplaced common sense to hard science.
      ]. Additionally, high-quality instruments are scarce, and developing new ones can be challenging [
      • Kingsley C.
      • Patel S.
      Patient-reported outcome measures and patient-reported experience measures.
      ,
      • McKenna S.P.
      Measuring patient-reported outcomes: moving beyond misplaced common sense to hard science.
      ,
      • Besner A.-S.
      • Ferreira J.L.
      • Ow N.
      • Gaffar R.
      • Guadagno E.
      • Emil S.
      • et al.
      Patient-reported outcome measures in pediatric surgery - A systematic review.
      ]. Notably, including questions from validated surveys does not create a new equally valid survey [
      • Kingsley C.
      • Patel S.
      Patient-reported outcome measures and patient-reported experience measures.
      ]. PROM and PREM development requires adequate modeling, content generation with patient engagement, correct scaling and testing, and psychometric evaluation [
      • McNeill M.
      • Noyek S.
      • Engeda E.
      • Fayed N.
      Assessing the engagement of children and families in selecting patient-reported outcomes (PROs) and developing their measures: a systematic review.
      ,
      • McKenna S.P.
      Measuring patient-reported outcomes: moving beyond misplaced common sense to hard science.
      ]. Recent reviews examined the psychometric properties of existing PREMs and concluded that the available tools still have uncertain validity, reliability, and responsiveness [
      • Bull C.
      • Byrnes J.
      • Hettiarachchi R.
      • Downes M.
      A systematic review of the validity and reliability of patient-reported experience measures.
      ,
      • Kingsley C.
      • Patel S.
      Patient-reported outcome measures and patient-reported experience measures.
      ].
      The current review identified 10 distinct questionnaires among the 15 included articles, 9 created for specific studies, and classified as “in-house” questionnaires. These questionnaires are non-validated, lack reported psychometric properties, and with one exception were not piloted before use. In the absence of validity and reliability data, there is a risk of imprecise, biased, or misleading results [
      • Bull C.
      • Byrnes J.
      • Hettiarachchi R.
      • Downes M.
      A systematic review of the validity and reliability of patient-reported experience measures.
      ,
      • Roller J.M.
      • Courtemanche R.J.M.
      • Courtemanche D.J.
      A Review of Validated Quality-of-Life Patient-Reported Outcome Measures in Pediatric Plastic Surgery.
      ], resource waste, and an ethical dilemma of patient input being unable to generate healthcare change [
      • Bull C.
      • Byrnes J.
      • Hettiarachchi R.
      • Downes M.
      A systematic review of the validity and reliability of patient-reported experience measures.
      ,
      • McKenna S.P.
      Measuring patient-reported outcomes: moving beyond misplaced common sense to hard science.
      ,
      • De Rosis S.
      • Cerasuolo D.
      • Nuti S.
      Using patient-reported measures to drive change in healthcare: the experience of the digital, continuous and systematic PREMs observatory in Italy.
      ]. All tools also require piloting, a vital step in the process of identifying unsuitable items for each population [
      • Kingsley C.
      • Patel S.
      Patient-reported outcome measures and patient-reported experience measures.
      ].
      Another surprising finding of this review was that only two instruments had patient and family involvement in their development. The remaining tools described item generation based on informal literature reviews and input from clinical experts. Questionnaires prepared by clinical professionals answer questions that they consider important, and may collect information that is of scant relevance to patients [
      • McKenna S.P.
      Measuring patient-reported outcomes: moving beyond misplaced common sense to hard science.
      ]. Patients and families are experts in their health and experiences; hence ensuring that their voices are at the center of the instrument development processes is essential and justified by scientific ethics and rigor [
      • McNeill M.
      • Noyek S.
      • Engeda E.
      • Fayed N.
      Assessing the engagement of children and families in selecting patient-reported outcomes (PROs) and developing their measures: a systematic review.
      ,
      • de Bienassis K.
      • Kristensen S.
      • Hewlett E.
      • Roe D.
      • Mainz J.
      • Klazinga N.
      Measuring patient voice matters: setting the scene for patient-reported indicators.
      ,
      • De Rosis S.
      • Cerasuolo D.
      • Nuti S.
      Using patient-reported measures to drive change in healthcare: the experience of the digital, continuous and systematic PREMs observatory in Italy.
      ]. Thus, instrument co-development and co-design are the new gold standards for PROMs and PREMs [
      • de Bienassis K.
      • Kristensen S.
      • Hewlett E.
      • Roe D.
      • Mainz J.
      • Klazinga N.
      Measuring patient voice matters: setting the scene for patient-reported indicators.
      ].
      A unique challenge in assessing patient experience in pediatric care is that it must be measured from the perspective of both the children and their parents [
      • Calabro K.A.
      • Raval M.V.
      • Rothstein D.H.
      Importance of patient and family satisfaction in perioperative care.
      ]. Disappointingly, most of the studies we reviewed evaluated only the perspective of parents, with very few including children as key stakeholders. As demonstrated by Wray et al., CYP have strong views regarding their hospital experience and are willing to share them [
      • Wray J.
      • Hobden S.
      • Knibbs S.
      • Oldham G.
      Hearing the voices of children and young people to develop and test a patient-reported experience measure in a specialist paediatric setting.
      ]. In this PREM development study, CYP engagement was excellent, suggesting that their healthcare experience was important to them, and they wanted their views to be acted on. Thus, whenever possible, self-reported measures are preferable when surveying CYP [

      Ishaque S. Adaptation and Validation of an Individualised Paediatric Health-Related Quality of Life Measure (Paediatric Measure Yourself Medical Outcome Profile) and its Evaluation in a Clinical Setting. PhD. The University of Adelaide, 2018.

      ].
      Surprisingly, our review did not identify a single true PREM used in pediatric surgery. In the absence of a true PREM, we included papers with both experience and satisfaction items. We classified all the questionnaires into three categories: 1. mostly satisfaction tools including experience questions, 2. mostly experience tools including satisfaction questions, and 3. PREMs. Papers reporting only satisfaction data were excluded, due to limited accuracy and value. PREMs report on the extent to which specific processes occurred during an episode of care [
      • Male L.
      • Noble A.
      • Atkinson J.
      • Marson T.
      Measuring patient experience: a systematic review to evaluate psychometric properties of patient reported experience measures (PREMs) for emergency care service provision.
      ]. For example, a PREM might ask whether the patient received all post-operative information - while a satisfaction measure would ask how satisfied the patient was with the information received. PREMs can therefore provide more specific information on how a service can be improved [
      • Male L.
      • Noble A.
      • Atkinson J.
      • Marson T.
      Measuring patient experience: a systematic review to evaluate psychometric properties of patient reported experience measures (PREMs) for emergency care service provision.
      ,

      Kash, McKahan. The evolution of measuring patient satisfaction. J Prim Health Care Gen Pract n.d.

      ,
      • Salisbury C.
      • Wallace M.
      • Montgomery A.A.
      Patients’ experience and satisfaction in primary care: secondary analysis using multilevel modelling.
      ].
      In healthcare, the concept and measurement of patient satisfaction go back to the 1980s, while patient experience only gained importance during the last decade [

      Kash, McKahan. The evolution of measuring patient satisfaction. J Prim Health Care Gen Pract n.d.

      ]. As noted, satisfaction is more subjective and reflects judgments of healthcare adequacy, not quality. Measures of patient's satisfaction are driven by the fulfillment of patients’ desires regardless of risks, costs, or effectiveness [

      Kash, McKahan. The evolution of measuring patient satisfaction. J Prim Health Care Gen Pract n.d.

      ]. Indeed, high patient satisfaction may correlate not only with increased costs but also with higher morbidity [
      • Espinel A.G.
      • Shah R.K.
      • McCormick M.E.
      • Krakovitz P.R.
      • Boss E.F.
      Patient satisfaction in pediatric surgical care: a systematic review.
      ]. Patient experience, on the other hand, can be an indicator of quality alongside patient safety and clinical effectiveness measures, though potentially confounded by health outcomes [
      • Bull C.
      • Byrnes J.
      • Hettiarachchi R.
      • Downes M.
      A systematic review of the validity and reliability of patient-reported experience measures.
      ]. PREMs can also reveal variations between high- and low-performing clinical practices [
      • Salisbury C.
      • Wallace M.
      • Montgomery A.A.
      Patients’ experience and satisfaction in primary care: secondary analysis using multilevel modelling.
      ] and encourage patients to reflect on the interpersonal aspects of their care [
      • Bull C.
      • Byrnes J.
      • Hettiarachchi R.
      • Downes M.
      A systematic review of the validity and reliability of patient-reported experience measures.
      ], making them a more robust measurement tool.
      Despite the increase in chronic and complex conditions addressed in pediatric surgery [
      • Bloemeke J.
      • Witt S.
      • Bullinger M.
      • Dingemann J.
      • Dellenmark-Blom M.
      • Quitmann J.
      Health-Related Quality of Life Assessment in Children and their Families: Aspects of Importance to the Pediatric Surgeon.
      ], none of the studies reviewed assessed patients and families after major congenital interventions, which constitute the most profound family experiences in our specialty. Instead, the most frequent surgical procedures surveyed were hernia repair, appendectomy, and the excision of soft tissue lesions. This bias in the literature results in major gaps in knowledge about patient experience in pediatric surgery and also misses the long-term longitudinal perspective unique to the developing child with a congenital malformation [
      • De Rosis S.
      • Cerasuolo D.
      • Nuti S.
      Using patient-reported measures to drive change in healthcare: the experience of the digital, continuous and systematic PREMs observatory in Italy.
      ].
      Most studies surveyed their participants during early postoperative follow-up, mainly by phone. Different survey administration methods have unique disadvantages. Telephone surveys require brief questionnaires and can easily generate interviewer bias, postal surveys can be very time consuming and expensive, while web-based surveys can exclude patients with impaired access to the internet [
      • De Rosis S.
      • Cerasuolo D.
      • Nuti S.
      Using patient-reported measures to drive change in healthcare: the experience of the digital, continuous and systematic PREMs observatory in Italy.
      ]. Recent studies have however shown that, with the increased democratization of smartphones, web-based surveys no longer increase selection bias [
      • De Rosis S.
      • Cerasuolo D.
      • Nuti S.
      Using patient-reported measures to drive change in healthcare: the experience of the digital, continuous and systematic PREMs observatory in Italy.
      ]. Moreover, smartphone applications can collect patient-reported measures very efficiently, effectively, and longitudinally, and are appealing to children [
      • Wang J.
      • Yao N.A.
      • Liu Y.
      • Geng Z.
      • Wang Y.
      • Shen N.
      • et al.
      Development of a Smartphone Application to Monitor Pediatric Patient-Reported Outcomes.
      ]. More contemporary survey delivery platforms are therefore needed in our specialty.
      As suggested in the literature [
      • De Rosis S.
      • Cerasuolo D.
      • Nuti S.
      Using patient-reported measures to drive change in healthcare: the experience of the digital, continuous and systematic PREMs observatory in Italy.
      ], most questionnaires reviewed included open questions or at least a comment section. Closed-ended questions allow the collection of quantitative data and benchmarking within healthcare organizations, but may miss richer information on patient experience. Therefore, the inclusion of narrative information in questionnaires should be encouraged [
      • De Rosis S.
      • Cerasuolo D.
      • Nuti S.
      Using patient-reported measures to drive change in healthcare: the experience of the digital, continuous and systematic PREMs observatory in Italy.
      ], although there are implications for resources for analysis.
      Based on the Mixed Methods Appraisal Tool results, the studies we reviewed were of good overall quality, having clear research questions and objectives, targeting the designated population, and analyzing the data appropriately. However, most studies used low-quality in-house questionnaires, thus limiting the accuracy of their findings.
      Our study has several limitations. Due to the heterogeneity of instruments identified, our analysis was primarily descriptive. The included articles were also highly heterogeneous in domains evaluated, conditions included, design, and results reported. Some studies reviewed lacked a clear design, requiring our team to classify them following Grimes’ algorithm of study designs [
      • Grimes D.A.
      • Schulz K.F.
      An overview of clinical research: the lay of the land.
      ], hence adding potential classification bias. Furthermore, the small number of included articles may impair the generalizability of our findings. Publication bias must also be considered, since studies showing poor patient satisfaction or experience may be less likely to be published. Regarding the risk of bias analysis, the tool does not provide a final numerical scale, leaving the interpretation of the results to the user - again adding potential bias. Additionally, this review did not include other PREM reporting contexts such as unpublished hospital surveys. However, hospital surveys often have limited psychometric information [
      • Male L.
      • Noble A.
      • Atkinson J.
      • Marson T.
      Measuring patient experience: a systematic review to evaluate psychometric properties of patient reported experience measures (PREMs) for emergency care service provision.
      ], and their inclusion is unlikely to have changed our findings. Lastly, we excluded qualitative experience and satisfaction studies that did not use a formal questionnaire, as they were not the focus of this study.

      2. Conclusion

      Although PROMs are increasingly used in pediatric surgery, PREMs are not yet in use, being substituted by satisfaction surveys. Moreover, existing surveys are frequently developed in-house without psychometric due diligence and have not been used with patients undergoing complex procedures or over time. Well-developed PREMs are formulated by clinical and patient-centered researchers in partnership with children and families, comprising items relevant and meaningful to them.
      Our results highlight the need for more rigorous approach for patient-centered measures and an improved understanding of satisfaction and experience concepts among researchers and pediatric surgical providers. Our findings also call for a shift from developing and using in-house satisfaction surveys to creating psychometrically sound experience instruments for the pediatric surgical population. Future research should consider improving the available tools or creating de novo PREMs able to generate credible data for health service improvement. Lastly, assessing patients' and families' experiences after major interventions remains an important target for the pediatric surgical community.

      Acknowledgments

      Dr. Julia Ferreira is supported by a stipend from the Mirella and Lino Saputo Foundation Chair in Pediatric Surgical Education and Patient and Family-Centered Care, Department of Pediatric Surgery, McGill University Faculty of Medicine and Health Sciences.

      Appendix A. Supplementary data

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