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Abstract Number: 1229

Stakeholder Needs Assessment for a New Model of Care for Pediatric Rheumatology in Ontario

Y. Ingrid Goh1,2, Michelle Diebold3, Delphine Lim2, Saunya Dover1, Roberta Berard4, Kristi Whitney-Mahoney5, Christine O'Brien5, Daniela Ardelean6, Brian Feldman2,7 and Deborah M. Levy2, 1Child Health Evaluative Sciences, The Hospital for Sick Children, Toronto, ON, Canada, 2Division of Rheumatology, The Hospital for Sick Children, Toronto, ON, Canada, 3Department of Rheumatology, Children's Hospital, London Health Sciences Centre, London, ON, Canada, 4Pediatrics, Children's Hospital, London Health Sciences Centre, London, ON, Canada, 5The Hospital for Sick Children, Toronto, ON, Canada, 6Pediatric Rheumatology, Children's Hospital, London Health Sciences Centre, London, ON, Canada, 7Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada

Meeting: 2016 ACR/ARHP Annual Meeting

Date of first publication: September 28, 2016

Keywords: Health Care, patient, pediatric rheumatology and practice improvement

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Session Information

Date: Monday, November 14, 2016

Title: Health Services Research - Poster II

Session Type: ACR Poster Session B

Session Time: 9:00AM-11:00AM

Background/Purpose: Twenty-five pediatric rheumatologists (PR) service a population of 14 million Ontarians.  Patients may travel up to 1500 km to be seen by a PR practising in tertiary healthcare centres. To facilitate care to patients living in distant communities we propose using a new model: local Advanced Clinician Practitioners in Arthritis Care (ACPAC) using telemedicine to engage with PRs.  There are more than 50 ACPACs in Ontario who may be able to provide pediatric patient care via this model. The following are results from the first phase of this project: a stakeholders’ needs assessment for a new Model of Care (MOC) for pediatric rheumatology in Ontario.

Methods: Three stakeholder groups were anonymously surveyed: (1) Adult rheumatologists’ opinions on treating pediatric patients; (2) ACPACs’ interest and availability to see pediatric patients; and (3) Patients’/caregivers’ perception of visit burden and their knowledge and attitudes towards alternate MOCs. Surveys were distributed to patients/caregivers who travelled >25 km for their appointment one of two tertiary healthcare facilities: The Hospital for Sick Children (SickKids) in Toronto, Ontario or London Health Sciences Centre (LHSC) in London, Ontario. Quantitative data were summarized using descriptive statistics and qualitative data were analyzed using grounded theory.

Results: 91/186 (49%) adult rheumatologists responded, of which 18 (20%) indicated that they saw pediatric patients. The majority indicated that they would prefer that some or all of their pediatric patients be cared for by a pediatric rheumatologist. 27/44 (61%) ACPACs responded, of which 6 (22%) indicated that they would have salary/time to receive additional training or hold additional clinics to see pediatric patients.

Patient/ Caregiver Survey Number of Respondents Travelled >50km Travelled >200km Would use telemedicine to avoid cost of clinic visit Not aware of availability of telemedicine Comfortable seeing an ACPAC Spent >$50 travelling to their appointment Missed ≥1 day of work
Toronto 111/134 (83%) 89/111 (80%) 13/111 (12%) 36/110 (33%) 86/111 (77%) 104/111 (94%) 36/111 (32%) 53/99 (54%)
London 130/131 (99%) 103/128 (80%) 16/128 (13%) 33/119 (28%) 96/126 (76%) 125/126 (99%) 53/130 (41%) 66/116 (57%)

Several themes were identified including the importance of seeing the healthcare team in person for physical examination, hesitancy to use telemedicine due to lack of experience, and preference for an assessment closer to home. Some indicated that telemedicine may be appropriate for certain situations such as follow-up visits or bloodwork results. Those who indicated a preference for telemedicine indicated that it would reduce time away from school/work. Parents indicated that jobs were in jeopardy due to missed time and that the high cost of parking was a deterrent.

Conclusion: A MOC integrating ACPACs, telemedicine, and PRs may improve local access to pediatric rheumatology care while reducing the burden of travel and cost to families. Barriers to this new model include the lack of awareness about the role of telemedicine and how it can be combined with ACPACs to facilitate a patient appointment.


Disclosure: Y. I. Goh, None; M. Diebold, None; D. Lim, None; S. Dover, None; R. Berard, None; K. Whitney-Mahoney, None; C. O'Brien, None; D. Ardelean, None; B. Feldman, Bayer and Baxalta, 2,Pfizer, Optum, Novartis, BMS, 5; D. M. Levy, None.

To cite this abstract in AMA style:

Goh YI, Diebold M, Lim D, Dover S, Berard R, Whitney-Mahoney K, O'Brien C, Ardelean D, Feldman B, Levy DM. Stakeholder Needs Assessment for a New Model of Care for Pediatric Rheumatology in Ontario [abstract]. Arthritis Rheumatol. 2016; 68 (suppl 10). https://acrabstracts.org/abstract/stakeholder-needs-assessment-for-a-new-model-of-care-for-pediatric-rheumatology-in-ontario/. Accessed .
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