Age- and Sex-Specific Needs for Children Undergoing Inflammatory Bowel Disease Surgery: A Qualitative Study

被引:4
作者
Balbale, Salva N. [1 ,2 ]
Schafer, Willemijn L. A. [3 ]
Davis, Teaniese [4 ]
Blake, Sarah C. [5 ]
Close, Sharron [6 ]
Perry, Joseph E. [5 ]
Zarate, Raul Perez [5 ]
Ingram, Martha-Conley [2 ,3 ,7 ]
Strople, Jennifer [8 ]
Johnson, Julie K. [2 ,3 ]
Holl, Jane L. [9 ,10 ]
Raval, Mehul, V [2 ,3 ,7 ]
机构
[1] Northwestern Univ, Feinberg Sch Med, Div Gastroenterol & Hepatol, Dept Med, Chicago, IL 60611 USA
[2] Northwestern Univ, Feinberg Sch Med, Inst Publ Hlth & Med, Ctr Hlth Serv & Outcomes Res, Chicago, IL 60611 USA
[3] Northwestern Univ, Feinberg Sch Med, Dept Surg, Surg Outcomes & Qual Improvement Ctr SOQIC, Chicago, IL 60611 USA
[4] Kaiser Permanente Georgia, Ctr Res & Evaluat, Atlanta, GA USA
[5] Emory Univ, Rollins Sch Publ Hlth, Dept Hlth Policy & Management, Atlanta, GA 30322 USA
[6] Emory Univ, Nell Hodgson Woodruff Sch Nursing, Dept Pediat Adv Practice Nursing, Atlanta, GA 30322 USA
[7] Northwestern Univ, Feinberg Sch Med, Ann & Robert H Lurie Childrens Hosp Chicago, Dept Surg,Div Pediat Surg, Chicago, IL 60611 USA
[8] Northwestern Univ, Feinberg Sch Med, Dept Pediat, Div Gastroenterol Hepatol & Nutr,Ann & Robert H L, Chicago, IL 60611 USA
[9] Univ Chicago, Dept Neurol, Biol Sci Div, 5841 S Maryland Ave, Chicago, IL 60637 USA
[10] Univ Chicago, Ctr Healthcare Delivery Sci & Innovat, Chicago, IL 60637 USA
关键词
Pediatrics; Surgery; Enhanced recovery pathway; Inflammatory bowel disease; Patient-centered care; ENHANCED RECOVERY; PEDIATRIC-SURGERY; PATIENT; IMPLEMENTATION; OUTCOMES; GUIDELINES; CARE; ENGAGEMENT; SERVICES; TAXONOMY;
D O I
10.1016/j.jss.2021.12.033
中图分类号
R61 [外科手术学];
学科分类号
摘要
Introduction: The use of enhanced recovery protocols (ERP) is extending to pediatric surgical populations, such as patients with inflammatory bowel diseases (IBDs). Given the variation in age-and sex-specific characteristics of pediatric IBD patients, it is important to under-stand the unique needs of subgroups, such as male versus female or preadolescent versus older patients, when implementing ERPs. We gathered clinician, patient, and caregiver perspectives on age-and sex-specific needs for children undergoing IBD surgery. Methods: We used semistructured interviews and focus groups to assess ERP needs and perceived differences in needs between preadolescent (10-13 y), older (14-19 y), male, and female IBD patients. Participants included clinicians, patients who had recent IBD surgery, and patients' caregivers. Results: Forty-eight clinicians, six patients, and eight caregivers participated. Three broad categories of themes emerged: concerns, needs, and experiences related to the (1) surgical care process; (2) continuum of IBD care; and (3) suggestions to make surgical care more patient centered. With regard to surgical care processes, stakeholders reported different communication needs for preadolescent and older children. Key themes about the continuum of IBD care were the need (1) for support from child life specialists and (b) to address young women's health issues. Suggestions to make surgical care more patient centered included providing older children with patient experiences that reflect their perspective as young adults. Conclusions: The findings highlight the need to adopt a patient-centered approach for ERP use that actively addresses age-and sex-specific factors while engaging patients and caregivers as partners with clinicians to improve surgical care for children with IBD. (c) 2022 Elsevier Inc. All rights reserved.
引用
收藏
页码:46 / 58
页数:13
相关论文
共 65 条
  • [1] Natural History of Pediatric-onset Inflammatory Bowel Disease A Systematic Review
    Abraham, Bincy P.
    Mehta, Seema
    El-Serag, Hashem B.
    [J]. JOURNAL OF CLINICAL GASTROENTEROLOGY, 2012, 46 (07) : 581 - 589
  • [2] Abramson O, 2011, ADV THERAPY INFLAMMA, V1, P37
  • [3] Quality of life of parents and siblings of children with inflammatory bowel disease
    Akobeng, AK
    Miller, V
    Firth, D
    Suresh-Babu, MV
    Mir, P
    Thomas, AG
    [J]. JOURNAL OF PEDIATRIC GASTROENTEROLOGY AND NUTRITION, 1999, 28 (04) : S40 - S42
  • [4] Surgical Management of Crohn Disease in Children: Guidelines From the Paediatric IBD Porto Group of ESPGHAN
    Amil-Dias, Jorge
    Kolacek, Sanja
    Turner, Dan
    Paerregaard, Anders
    Rintala, Risto
    Afzal, Nadeem A.
    Karolewska-Bochenek, Katarzyna
    Bronsky, Jiri
    Chong, Sonny
    Fell, John
    Hojsak, Iva
    Hugot, Jean-Pierre
    Koletzko, Sibylle
    Kumar, Devinder
    Lazowska-Przeorek, Izabella
    Lillehei, Craig
    Lionetti, Paolo
    Martin-de-Carpi, Javier
    Pakarinen, Mikko
    Ruemmele, Frank M.
    Shaoul, Ron
    Spray, Christine
    Staiano, Annamaria
    Sugarman, Ian
    Wilson, David C.
    Winter, Harland
    Kolho, Kaija-Leena
    [J]. JOURNAL OF PEDIATRIC GASTROENTEROLOGY AND NUTRITION, 2017, 64 (05) : 818 - 835
  • [5] Experience-based design: from redesigning the system around the patient to co-designing services with the patient
    Bate, Paul
    Robert, Glenn
    [J]. QUALITY & SAFETY IN HEALTH CARE, 2006, 15 (05): : 307 - 310
  • [6] Epidemiology of Pediatric Inflammatory Bowel Disease: A Systematic Review of International Trends
    Benchimol, Eric I.
    Fortinsky, Kyle J.
    Gozdyra, Peter
    Van den Heuvel, Meta
    Van Limbergen, Johan
    Griffiths, Anne M.
    [J]. INFLAMMATORY BOWEL DISEASES, 2011, 17 (01) : 423 - 439
  • [7] Qualitative data analysis for health services research: Developing taxonomy, themes, and theory
    Bradley, Elizabeth H.
    Curry, Leslie A.
    Devers, Kelly J.
    [J]. HEALTH SERVICES RESEARCH, 2007, 42 (04) : 1758 - 1772
  • [8] Embracing change: the era for pediatric ERAS is here
    Brindle, Mary E.
    Heiss, Kurt
    Scott, Michael J.
    Herndon, C. Anthony
    Ljungqvist, Olle
    Koyle, Martin A.
    [J]. PEDIATRIC SURGERY INTERNATIONAL, 2019, 35 (06) : 631 - 634
  • [9] Concerns of patients with inflammatory bowel disease - A review of emerging themes
    Casati, J
    Toner, BB
    de Rooy, EC
    Drossman, DA
    Maunder, RG
    [J]. DIGESTIVE DISEASES AND SCIENCES, 2000, 45 (01) : 26 - 31
  • [10] Clay Aaron M, 2016, AMA J Ethics, V18, P40, DOI 10.1001/journalofethics.2016.18.1.medu3-1601