Patients' Access to Telephone and E-mail Services Provided by IBD Nurses in Canada
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Journal of the Canadian Association of Gastroenterology, 2021, XX(XX), 1–8 https://doi.org/10.1093/jcag/gwab041 Original Article Original Article Patients’ Access to Telephone and E-mail Services Provided by IBD Nurses in Canada Downloaded from https://academic.oup.com/jcag/advance-article/doi/10.1093/jcag/gwab041/6406971 by guest on 09 December 2021 Usha Chauhan, NP, MN, BScN, ACNP(D), CGN(C)1, , Larry Stitt, MSc2, Noelle Rohatinsky, RN, MN, PhD, CMSN(C)3, Melanie Watson, RN (EC), MN, NP4, Barbara Currie, MN, RN-NP5, Lisa Westin, MN, RN6, Wendy McCaw, RN7, Christine Norton, PhD MA RN8, Irina Nistor, NP, PhD(C), MN9, 1 Hamilton Health Sciences, Hamilton, Ontario, Canada; 2Robarts Clinical Trials, London, Ontario, Canada; 3University of Saskatchewan, Saskatoon, Saskatchewan, Canada; 4London Health Sciences Centre, London, Ontario, Canada; 5QEII Health Sciences Centre, Halifax, Nova Scotia, Canada; 6Red Deer Regional Hospital, Red Deer, Alberta, Canada; 7Speciality Rx, London, Ontario, Canada; 8King’s College London, London, UK; 9Queen’s University, Kingston, Ontario, Canada Correspondence: Usha Chauhan, NP, MN, BScN, ACNP(D), CGN(C), Nurse Practitioner- Adult Digestive Diseases, Hamilton Health Sciences, 1280 Main St. W. Room 3N51, Hamilton, Ontario L8S 4K1, Canada, e-mail: chauhanu@hhsc.ca ABSTRACT Background: Inflammatory bowel disease (IBD) can impact the quality of life and increase health care resource utilization. Nurses play an integral role in ensuring ease of access to care between sched- uled office visits. Aims: This study aimed to capture the utilization of Canadian IBD nursing telephone and e-mail services. Methods: A descriptive cross-sectional study with an eight-item online survey was completed by nurses to assess the use of nurse-led telephone and e-mail services for IBD patients. Results: Twenty-one IBD nurses participated, and 572 patients nurse encounters were reported. Patients with ulcerative (UC) contacted with disease flare when compared to Crohn’s disease (CD) (40% versus 24%, P < 0.001). Nursing services were primarily utilized for queries regarding medi- cation (39.3%), disease exacerbations (29.6%), investigations (26%), and scheduling appointments (17.6%). Patients with CD had more telephone conversations (62.7%) and required more follow-up telephone calls (72.2%) compared to patients with UC (33%) and 25%, respectively. Nurse-managed interventions were provided independently for 61.4% of encounters, while 19% required a sched- uled appointment in the IBD clinic. In the absence of telephone or e-mail assistance, older patients were more likely to call their family doctor (r = 0.18, P < 0.001), visit the emergency room (r = 0.18, P < 0.001), visit an urgent access clinic (r = 0.22, P < 0.001), or visit a walk-in clinic (r = 0.29, P < 0.001) than younger patients. Conclusions: Nurse-managed IBD advice lines are proactive services that can address most patient disease-related concerns. Keywords: E-mail; Inflammatory bowel disease IBD; Nursing; Patient support; Specialist nursing; Telephone Introduction Canada is an ‘IBD epicentre’ (1) with one of the world’s highest negative impact on patients’ quality of life and health care uti- prevalence rates (2). The unpredictable disease course coupled lization (2). Inflammatory bowel disease management involves with intermittent flares and periods of remission has a substantial regular patient–provider interactions and follow-ups, focusing Received: March 28, 2021; Accepted: October 9, 2021. 1 © Crown copyright 2021. This Open Access article contains public sector information licensed under the Open Government Licence v3.0 (https://www.nationalarchives.gov.uk/doc/open-government-licence/version/3/).
2 Journal of the Canadian Association of Gastroenterology, 2021, Vol. XX, No. XX on disease activity and pharmaceutical treatment approaches IBD care, while others are research nurses, case managers, and (3,4). However, IBD patients’ care extends beyond regular biologic support program coordinators (19). The majority of clinic follow-up due to the disease’s unpredictable nature and Canadian IBD nurses are advanced practice nurses or nurses disease exacerbations, which do not coincide with scheduled with extensive nursing experience. Their primary role includes appointments (2). Consequently, efforts are being made to ex- providing patient-related outpatient telephone advice, rapid plore patient-centred ways to meet this population’s complex access to care, and transition care. Despite the variations in needs beyond the convenience and availability of health care nursing roles, education levels, experience, and scope of prac- providers and health services (5). tice, IBD nurses widely provide telephone advice lines (19). Downloaded from https://academic.oup.com/jcag/advance-article/doi/10.1093/jcag/gwab041/6406971 by guest on 09 December 2021 Access to gastroenterology care varies throughout Canada Telephone communication is an excellent tool in chronic dis- (6). The management of Canadian patients living with IBD ease management and is an invaluable resource for IBD patients. occurs in acute care locations, ambulatory clinics, and family Nurse-led telephone services provide IBD patients with a di- practice settings (7). While clinical guidelines suggest that rect link to clinical status reports, disease and treatment educa- patients with active IBD symptoms should be seen by a spe- tion, support, completion of health care forms, and insurance cialist within 2 weeks (8), in practice, the wait time is typically authorization (20). In addition, nurse advice lines represent a much longer (27% 3 to 12 months, 6% over 12 months) (9). safe and effective means of managing patients’ concerns while Furthermore, in Canada, the number of gastroenterologists per minimizing associated health care costs (21,22). However, such thousand IBD patients varies geographically, ranging from 1.13 nurse-led initiatives have been understudied in the Canadian to 10.65 (10). Consequently, the lack of access to specialized population. care places a significant strain on emergency departments’ re- source utilization (6). STUDY OBJECTIVES Nurse-led advice lines for IBD care are considered standard This study aimed to capture the utilization of Canadian IBD practice in the United Kingdom (7). While there is a recognized nursing telephone and e-mail services for 14 days. Secondary critical shortage of IBD nurses, 2.5 Full-Time Equivalent objectives were to (1) compare the reasons for the telephone (FTE) clinical nurse specialists with competencies in IBD are and e-mail services encounters between patients with Crohn’s recommended for a defined population of 250,000 (10,11). disease (CD) and ulcerative colitis (UC); (2) evaluate the Due to the increasing numbers of patients with IBD, the IBD nurse workload associated with a telephone and e-mail increasing complexity of the IBD nurse role, and competing service; (3) determine the percentage of IBD patients requiring demands on workload, the work setting can be particularly escalated care following their encounter with the IBD nurse stressful for IBD nurses (12). Nevertheless, IBD patients ex- telephone and e-mail service (e.g., referral to the Emergency press satisfaction with the care provided via advice lines and Department, booking an outpatient clinic appointment or tests, recommend them for their ongoing care needs (13,14). Up to referral to allied health care providers or family doctors); and 100% of IBD nurses in the United Kingdom and 75% of IBD (4) determine patients’ views of their preferred health care utili- nurses in Australia provide telephone access with up to 125 in- zation options based on age and in the absence of IBD nurse-led coming and outgoing telephone calls per day in a high volume telephone and e-mail services. IBD referral centre (15). The utilization of specialist nurses in IBD care has been as- sociated with decreased outpatient assessments, emergency STUDY DESIGN AND METHODS room visits, and hospitalizations, reduced hospital length of This descriptive cross-sectional study was conducted in Canada stay, improved mental health, and greater patient satisfaction using the Canadian IBD (CANIBD) nurses’ group database. with care (16–18). However, the role of IBD nursing is highly A total of 84 IBD nurses invited who had previously consented dependent on government or hospital funding. In addition, to receive e-mails regarding CANIBD related initiatives were IBD nurses are predominantly employed in academic centres, invited by e-mail to participate. A unique identifier was assigned where large patient volumes limit nurses’ abilities to compre- to each nurse. hensively address patients’ learning needs and concerns during An eight-item online data collection tool was developed appointments (9). (Supplementary Appendix 1) to capture the telephone and There are fewer than 90 IBD nurses across Canada (19), and e-mail encounters in Google Docs in English and translated more than 270,000 individuals have IBD (8). IBD nurses in to French. Four nurses pretested this tool to ensure content Canada have diverse roles and spend most of their time pro- validity. To enhance study participation, IBD nurses were pro- viding outpatient care, rapid access clinics, and advice line vided with the option to complete data collection online or fax services (14). Only 28.72% (79/275) of specialist GI nurses the completed data collection form to the principal investigator. practicing in gastroenterology have a primary role in providing Each IBD nurse participant received the study information
Journal of the Canadian Association of Gastroenterology, 2021, Vol. XX, No. XX 3 and a copy of the data collection tool with instructions. The ETHICAL CONSIDERATIONS study framework was presented to a group of IBD nurses who Ethical approval was attained through the Hamilton Health recommended that 2 weeks of data collection are feasible based Sciences Research Ethics Board (HiREB Project #: 2018- on their clinical workload. Therefore, data were collected over 2920). There was no financial incentive to participate in this 2 weeks between May 1, 2017 and June 30, 2017. The first con- study for either IBD nurses or patient participants. Implied con- tact with the patient participants was defined as the initial en- sent was obtained from the nurses and verbal consent from the counter. During the telephone encounter or via e-mail sent by patients during the telephone and e-mail encounters. The study the IBD nurse, patients were asked about how likely they were was conducted following the Declaration of Helsinki. Downloaded from https://academic.oup.com/jcag/advance-article/doi/10.1093/jcag/gwab041/6406971 by guest on 09 December 2021 to utilize alternative health care services in the absence of tele- phone or e-mail service. RESULTS Utilization of Telephone and E-mail Services STATISTICAL METHODS A total of 21 nurses from 16 centres across Canada participated. Descriptive analyses were performed for the nursing role, pa- Nurses worked with both adult and pediatric populations tient gender, diagnosis, call length and purpose, and nursing and had varying role designations, including research nurses, action. For each alternative health care service option that clinic nurses, Clinical Nurse Specialists (CNS), and Nurse would have been used in the absence of the telephone or e-mail Practitioners (NP) (Figure 1). Of 572 encounters reported, service, the percentage of those likely or very likely to use the al- there were 443 (77%) initial telephone encounters, 93 ternative was calculated by encounter type and plotted using bar (16%) initial e-mail encounters, and 36 (6%) follow-up tele- charts. Spearman rank correlations were used to examine the phone encounters. The geographical location of the nursing association between patient age categories and their likelihood participants included Calgary and Edmonton (Alberta), of using alternative health care services using the Likert scale. Toronto, Hamilton, London, and Oshawa (Ontario), Sherbrook Age was coded in increments of 5 years from 0 to >65 years old. (Quebec) and Halifax (Nova Scotia). Most of the participating Statistical analyses were conducted with SAS Version 9.4. nurses were experienced, practicing in academic centers, while Figure 1. Summary of nurse participants.
4 Journal of the Canadian Association of Gastroenterology, 2021, Vol. XX, No. XX a minority of nurses practiced in community centers, with less In the absence of telephone or e-mail service, there were than one year experience. statistically significant associations between patient age and Reasons for the first encounter varied. Medication concerns likelihood of choosing alternative health care. Older patients were most frequent (n = 210, 39.3%), followed by disease (>46 years) were more likely to call their family doctor (r = 0.18, exacerbation (n = 158, 29.6%), investigation questions P < 0.001), visit the emergency room (r = 0.18, P < 0.001), visit (n = 139, 26.0%), scheduling appointments (n = 94, 17.6%), an urgent access clinic (r = 0.22, P < 0.001), or visit a walk-in and addressing other gastrointestinal symptoms (n = 86, clinic (r = 0.29, P < 0.001) than younger patients (
Journal of the Canadian Association of Gastroenterology, 2021, Vol. XX, No. XX 5 Table 1. Summary of the telephone and e-mail encounters First encounter Follow-up telephone calls after E-mail Telephone All e-mail (n = 36, 6%) (n = 93, 16%) (n = 443, 77%) (n = 536, 94%) Nurse Type Adult 78 (83.9%) 327 (73.8%) 405 (75.6%) 26 (72.2%) Pediatric 15 (16.1%) 116 (26.2%) 131 (24.4%) 10 (27.8%) Downloaded from https://academic.oup.com/jcag/advance-article/doi/10.1093/jcag/gwab041/6406971 by guest on 09 December 2021 Gender of patient participant Female 45 (52.9%) 244 (57.1%) 289 (56.5%) 21 (61.8%) Male 40 (47.1%) 183 (42.9%) 223 (43.6%) 13 (38.2%) Age 0–18 14 (15.4%) 122 (27.6%) 136 (25.5%) 11 (30.6%) 19–45 54 (59.3%) 197 (44.6.%) 251 (47.1%) 16 (44.4%) 46–55 20 (22.0%) 95 (21.5%) 115 (21.6%) 6 (16.7%) >65 3 (3.3%) 28 (6.3%) 31 (5.8%) 3 (8.3%) Diagnosis Crohn’s disease 49 (52.7%) 285 (64.8%) 334 (62.7%) 26 (72.2%) Ulcerative colitis 36 (38.7%) 140 (31.8%) 176 (33.0%) 9 (25.0%) Undifferentiated IBD (IBDU) 8 (8.6%) 15 (3.4%) 23 (4.3%) 1 (2.8%) Length of Contact 30 minutes 2 (3.4%) 15 (3.4%) 17 (3.4%) 2 (5.6%) Reason for the encounter Disease Flare 13 (14.1%) 145 (32.8%) 158 (29.6%) 17 (47.2%) Finances 0 (0.0%) 7 (1.6%) 7 (1.3%) 2 (5.6%) Insurance 5 (5.4%) 16 (3.6%) 21 (3.9%) 0 (0.0%) Investigations 16 (17.4%) 123 (27.8%) 139 (26.0%) 7 (19.4%) Medication concerns 40 (43.5%) 170 (38.5%) 210 (39.3%) 19 (52.8%) Other GI symptoms 10 (10.9%) 76 (17.2%) 86 (16.1%) 9 (25.0%) Psycho-social concerns 2 (2.2%) 26 (5.9%) 28 (5.2%) 4 (11.1%) Scheduling appointments 27 (29.4%) 67 (15.2%) 94 (17.6%) 14 (38.9%) Non-GI symptoms 3 (3.3%) 13 (2.9%) 16 (3.0%) 3 (8.3%) Other 10 (10.9%) 17 (3.9%) 27 (5.1%) 2 (5.6%) Action Referral 18 (19.4%) 95 (21.6%) 113 (21.2%) 17 (48.6%) Contact patient support program 5 (5.4%) 37 (8.4%) 42 (7.9%) 4 (11.4%) ER/Hospital admission 1 (1.1%) 8 (1.8%) 9 (1.7%) 3 (8.6%) Medication adjustment 7 (7.5%) 38 (8.6%) 45 (8.4%) 3 (8.6%) Nurse managed intervention 47 (50.5%) 280 (63.6%) 327 (61.4%) 24 (68.6%) Schedule appointment in IBD clinic 24 (25.8%) 77 (17.5%) 101 (19.0%) 11 (31.4%) Schedule call to reassess 7 (7.5%) 50 (11.4%) 57 (10.7%) 7 (20.0%) Other 8 (8.6%) 32 (7.3%) 40 (7.5%) 2 (5.7%) Canada’s vast landscape can present challenges for patients IBD-related complications (24). Advice lines provide an living in rural areas as it can be challenging to access special- opportunity to access expert IBD nursing care and, in turn, ized, local health care due to limited access to IBD specialists mitigate the disease burden for patients and the health care (24). As a result, patients are more likely to utilize emer- system, particularly for rural patients. Moreover, nurse- gency rooms require hospital admissions, and experience led IBD advice lines may decrease patients’ out-of-pocket
6 Journal of the Canadian Association of Gastroenterology, 2021, Vol. XX, No. XX Table 2. Reasons for the first encounters by diagnosis CD UC Total P value n (%)γ n (%)γ n (%)γ Disease flare 80 (24.0) 70 (40.0) 150 (29.5)
Journal of the Canadian Association of Gastroenterology, 2021, Vol. XX, No. XX 7 Table 3. Association between likely alternative health care utilization with age for the first encounter Spearman’s r 95% CI P value (testing r = 0) Call gastroenterologist office −0.11 (−0.20 to −0.02) 0.019 Call family doctor 0.18 (0.08–0.27)
8 Journal of the Canadian Association of Gastroenterology, 2021, Vol. XX, No. XX research is warranted to explore the effects of IBD nurse-led 3. Castiglione F, Imperatore N, Testa A, et al. Efficacy of a “contact center-based com- munication” in optimizing the care of inflammatory bowel diseases. Dig Liver Dis services for patient care across Canada, particularly in rural 2016;48(8):869–73. areas, and their impacts on patient satisfaction, quality of life, 4. Regueiro M, Greer JB, Szigethy E. Etiology and treatment of pain and psycho- social issues in patients with inflammatory bowel diseases. Gastroenterology IBD-related complications, and health care utilization. 2017;152(2):430–439.e4. 5. Carter MJ, Lobo AJ, Travis SPL. Guidelines for the management of inflammatory bowel disease in adults. Gut 2004;53(Suppl V):1–16. SUPPLEMENTARY DATA 6. Nguyen GC, Bouchard S, Diong C; Promoting Access and Care through Centres of Excellence (PACE) Network. Access to specialists and emergency department Supplementary data are available at Journal of the Canadian visits in inflammatory bowel disease: A population-based study. J Crohns Colitis Downloaded from https://academic.oup.com/jcag/advance-article/doi/10.1093/jcag/gwab041/6406971 by guest on 09 December 2021 2019;13(3):330–6. Association of Gastroenterology online. 7. Lamb CA, Kennedy NA, Raine T, et al.; IBD guidelines eDelphi consensus group. British Society of Gastroenterology consensus guidelines on the management of in- flammatory bowel disease in adults. Gut 2019;68(Suppl 3):s1–s106. ACKNOWLEDGMENT 8. Crohn’s and Colitis Canada. Impact of inflammatory bowel disease. 2018; Available from: http://crohnsandcolitis.ca/Crohns_and_Colitis/documents/reports/2018- The authors would like to thank CANIBD nurses for their participa- Impact-Report-LR.pdf (accessed August 2, 2020). tion in this study. 9. Bray J, Fernandes A, Nguyen GC, et al. The challenges of living with inflammatory bowel disease: Summary of a summit on patient and healthcare provider perspectives. Can J Gastroenterol Hepatol 2016;2016:9430942. 10. Leary A, Mason I, Punshon G. Modelling the inflammatory bowel disease specialist AUTHOR CONTRIBUTIONS nurse workforce standards by determination of optimum caseloads in the UK. J Crohns Colitis 2018;12(11):1295–301. U.C.: Substantial contributions to the conception and design of the 11. El-Matary W, Benchimol EI, Mack D, et al. Allied health professional support in pedi- study; acquisition and analysis of study data; drafting the work; de- atric inflammatory bowel disease: A survey from the Canadian Children Inflammatory velopment and final approval of the manuscript; agreement to be ac- Bowel Disease Network-A Joint Partnership of CIHR and the CH.I.L.D. Foundation. Can J Gastroenterol Hepatol 2017;2017:3676474. countable for all aspects of the work. L.S.: Substantial contributions 12. Correal EN, Leiva OB, Galguera AD, et al. Nurse-led telephone advice line for patients to acquisition of study design, development of the database, statistical with inflammatory bowel disease: A cross-sectional multicenter activity analysis. analysis, and review of the manuscript. N.R.: Substantial contribu- Gastroenterol Nurs 2019;42(2):133–9. 13. Bager P, Chauhan U, Greveson K, et al. Systematic review: Advice lines for patients tion to the development and final approval of the manuscript. M.W.: with inflammatory bowel disease. Scand J Gastroenterol 2018;53(5):506–12. Substantial contributions to the acquisition of study design and con- 14. Bernstein M, Chhibba T, Walker J, et al. Preferences for care for active symptoms of tribution of writing the manuscript. B.C.: Substantial contributions IBD in a population based sample. Gastroenterology 2017;152(5):S365. 15. Reid LW, Chivers S, Plummer V, et al. Inflammatory bowel disease manage- to the acquisition of study design and review of the final manuscript. ment: A review of nurses’ roles in Australia and the United Kingdom. Aust J W.M.: Substantial contributions to acquisition and analysis of study Adv Nurs 2009;27(2):19–26.et al. Inflammatory bowel disease management: data; drafting the work; final approval of the manuscript; agree- A review of nurses’ roles in Australia and the United Kingdom. Aust J Adv Nurs 2009;27(2):19–26. ment to be accountable for all aspects of the work. C.N.: Substantial 16. Leach P, De Silva M, Mountifield R, et al. The effect of an inflammatory bowel disease contributions to the conception and design of the study; analysis of nurse position on service delivery. J Crohns Colitis 2014;8(5):370–4. data; final approval of the manuscript; agreement to be accountable 17. Nightingale AJ, Middleton W, Middleton SJ, et al. Evaluation of the effectiveness of a specialist nurse in the management of inflammatory bowel disease (IBD). Eur J for all aspects of the work. I.N.: Substantial contributions to the con- Gastroenterol Hepatol 2000;12(9):967–73. ception and study design, acquisition and analysis of data, drafting the 18. Belling R, McLaren S, Woods L. Specialist nursing interventions for inflammatory work, development and final approval of the manuscript, agreement to bowel disease. Cochrane Database Syst Rev 2009;4:CD006597 19. Stretton JG, Currie BK, Chauhan UK. Inflammatory bowel disease nurses in Canada: be accountable for all aspects of the work. An examination of Canadian gastroenterology nurses and their role in inflammatory bowel disease care. Can J Gastroenterol Hepatol 2014;28(2):89–93. 20. Ramos-Rivers C, Regueiro M, Vargas EJ, et al. Association between telephone activity Funding and features of patients with inflammatory bowel disease. Clin Gastroenterol Hepatol 2014;12(6):986–94.e1. The study did not receive any funding. 21. Kemp K, Dibley L, Chauhan U, et al. Second N-ECCO consensus statements on the European nursing roles in caring for patients with Crohn’s disease or ulcerative colitis. J Crohns Colitis 2018;12(7):760–76. 22. O’Connor M, Bager P, Duncan J, et al. N-ECCO Consensus statements on the CONFLICT OF INTEREST European nursing roles in caring for patients with Crohn’s disease or ulcerative colitis. U.C.: Advisory Board- AbbVie, Janssen, Takada, Pfizer, Ferring. B.C.: J Crohns Colitis 2013;7(9):744–64. 23. Harris RJ, Downey L, McDonnell M, et al. Evolution of an inflammatory bowel dis- Advisory Board/Consultant- AbbVie, Janssen, Takeda, Pfizer, Ferring. ease helpline and implications for service design and development. Gastrointest Nurs The other authors declared no conflicts of interest. 2020;18(2):46–50. 24. Benchimol EI, Bernstein CN, Bitton A, et al. The impact of inflammatory bowel disease in Canada 2018: A scientific report from the Canadian Gastro-Intestinal Epidemiology Consortium to Crohn’s and Colitis Canada. J Can Assoc Gastroenterol References 2019;2(Suppl 1):1–5. 1. Rocchi A, Benchimol EI, Bernstein CN, et al. Inflammatory bowel disease: A Canadian 25. Squires SI, Boal AJ, Lamont S, et al. Implementing a self-management strategy in in- burden of illness review. Can J Gastroenterol 2012;26(11):811–7. flammatory bowel disease (IBD): Patient perceptions, clinical outcomes and the im- 2. Cross RK, Jambaulikar G, Langenberg P, et al. TELEmedicine for Patients with pact on service. Frontline Gastroenterol 2017;8(4):272–8. Inflammatory Bowel Disease (TELE-IBD): Design and implementation of 26. Younge L, Mason I, Kapasi R. Specialist inflammatory bowel disease nursing in the UK: randomized clinical trial. Contemp Clin Trials 2015;42:132–44. Current situation and future proofing. Frontline Gastroenterol 2021;12(3):169–74.
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