P0775 - Providing Trauma Informed Care for Perianal Disease: What Matters Most to Patients?

Sunday, October 22, 2023

3:30 PM – 7:00 PM PT

Location: Exhibit Hall

Has Audio

Presenting Author(s)

RL

Rachita Llona, MS, MPH, MD

Mount Sinai Hospital

Rachita Llona, MS, MPH, MD¹, Joshua Lacoste, BA¹, Laurie Keefer, PhD², Serre-yu Wong, MD, PhD¹
¹Mount Sinai Hospital, New York, NY; ²Icahn School of Medicine at Mount Sinai, New York, NY

Introduction: Crohn’s related perianal disease occurs in ~25% of Crohn’s patients, who are often refractory to medical and surgical treatment options and report reduced quality of life. Patient experience of care is highly variable and poorly understood. Biopsychosocially complex IBD patients have been shown to benefit from integrated care but less is known about how existing care models could be adapted to better serve this vulnerable perianal disease population. The aims of this study were to: (1) generate patient-centered recommendations for how providers and care settings can improve the patient experience, and 2) identify key themes driving the impact and burden of the disease and its treatments on patients.

Methods: Patients with Crohn’s related perianal disease were recruited to participate in a semi-structured opened-ended interviews lasting 45min-1 hour. Interviews were completed until saturation was reached. Questions addressed: disease history/treatment, impact on quality of life, coping approaches, and patient/provider relationship. Data was transcribed and characterized according to themes.

Results: 10 patients including 60% female (mean age = 41, range 15-70 years, and average disease duration 11 years) participated (see table 1). Themes that emerged from data analysis include wound care, provider care, holistic nature of care, and support groups/education. Logistically, (10 of 10) patients felt wound care was under addressed, requesting: supply lists, nursing teaching/instructions, and connection to wound care specialists. Patients (8 of 10) reported that they would have benefited from early referrals for mental health care. Patients (9 of 10) expressed their medical experience would feel better if providers inquired more regarding physical/emotional/sexual toll. Universally, (10 of 10) patients wanted more information earlier in their disease course regarding the possible trajectories of disease, options for treatment.

Discussion: This study is one of few in-depth qualitative patient perspective studies of Crohn’s related perianal disease. Patients identified key challenges that can be addressed by patient education interventions, standardization of referral processes (for early mental health, nutrition, and specialist connections), as well as providing wound care supply lists. Patients endorsed a need for earlier connection to support groups (in person or online) and patient focused educational materials. Development of initiatives addressing these needs is underway (see figure 1).

Figure: Figure 1: Future Directions

Patient Characteristic Data
All Patients	Crohn’s related Perianal Disease
N	10
Sex	Male = 4 Female = 6
Age Range (Avg)	15-70 years (41 years)
Race	White N= 9 Black N= 1
Length of Time with Perianal Disease (Avg)	1-20 years (11 years)
Treatments Undergone Surgical Treatment Setons Abscess I&D Fissurectomy Ever had Crohn’s related ostomy Medical Treatment On biologic currently Avg # of Biologics (lifetime) Range of # of Biologics (lifetime)	N= 8 N= 7 N= 2 N= 2 N= 9 2.9 0-7
Current Disease severity (self rated) Disease severity at worst (self rated)	Mild = 2 Moderate = 3 Severe = 5 Severe = 10
Tried Support Groups In person Online Had >1 negative experience with support groups	N= 4 N= 4 N= 3
Tried Any Holistic Treatments CBD/THC Hyperbaric oxygen Acupuncture	N= 7 N= 3 N= 2 N= 2
Patient/Provider Data
Wound Care Supply Discussion with Provider	N= 1
Connected to Mental Health provider via GI	N= 3
Expressed need for providers to ask/listen more regarding daily life	N= 9
Expressed need for routine connection to mental health care	N= 8
Expressed need for increased expectations setting by provider	N= 10

Table: Table 1: Patient Characteristics and Patient/Provider Data

Disclosures:

Rachita Llona indicated no relevant financial relationships.

Joshua Lacoste indicated no relevant financial relationships.

Laurie Keefer: AbbVie – Consultant. Ardelyx – Consultant. Eli Lilly – Consultant. Pfizer – Consultant. Takeda – Consultant. Trellus Health – Owner/Ownership Interest.

Serre-yu Wong indicated no relevant financial relationships.

Rachita Llona, MS, MPH, MD¹, Joshua Lacoste, BA¹, Laurie Keefer, PhD², Serre-yu Wong, MD, PhD¹. P0775 - Providing Trauma Informed Care for Perianal Disease: What Matters Most to Patients?, ACG 2023 Annual Scientific Meeting Abstracts. Vancouver, BC, Canada: American College of Gastroenterology.