Practice survey: adherence monitoring and intervention in pediatric gastroenterology and hepatology

Figures & data

Table 1 Participant characteristics and practice settings (n=154)

Characteristic	% (n)
Gender (female)	63.2 (96)
Number of years in clinical practice
≤5 years	25.3 (39)
6–15 years	33.8 (52)
>15 years	40.9 (63)
Geographic location of practice
West	16.9 (26)
Southwest	5.8 (9)
Rocky Mountains/plains	5.2 (8)
Midwest	35.1 (54)
Southeast	15.6 (24)
Middle Atlantic	14.3 (22)
New England	7.1 (11)
Practice setting
Children’s hospital, free-standing	51.9 (80)
Children’s hospital, located within a larger hospital	39.6 (61)
Private practice	6.5 (10)
Other (eg, free-standing outpatient clinic for children’s specialties, university hospital department of psychiatry)	1.9 (3)
Profession
Physician		49.4 (76)
Physician assistant		0.0 (0)
Fellow		2.6 (4)
Nurse		5.2 (8)
Nurse practitioner		20.1 (31)
Psychologist		18.2 (28)
Social worker		3.2 (5)
Nutritionist/dietician		0.0 (0)
Program coordinator		1.3 (2)
Medical assistant		0.0 (0)
Other		0.0 (0)
Patient population age range
Children (0–12 years)		99.4 (153)
Adolescents (13–18 years)		97.4 (150)
Young adults (19–25 years)		65.6 (101)
Adults (26+ years)		3.2 (5)
Size of gastroenterology/hepatology patient population at practice
0–100		4.5 (7)
101–200		1.9 (3)
201–300		5.2 (8)
301–400		3.2 (5)
401–500		5.2 (8)
501+		79.9 (123)
Health conditions treated
Inflammatory bowel disease		77.9 (120)
Celiac disease		75.3 (116)
Functional abdominal pain		81.8 (126)
Eosinophilic esophagitis		76.0 (117)
Eosinophilic gastroenteritis		62.3 (96)
Motility disorders		59.1 (91)
Gastroesophageal reflux		79.9 (123)
Functional dyspepsia		74.0 (114)
Short bowel/short gut syndrome		61.7 (95)
Irritable bowel syndrome		79.2 (122)
Familial adenomatous polyposis/polyposis syndromes		51.3 (79)
Colorectal cancer		14.3 (22)
Liver disease		63.0 (97)
Liver transplant		32.5 (50)
Constipation		83.8 (129)
Encopresis		79.2 (122)
Failure to thrive		77.9 (120)
Cyclic vomiting		72.7 (112)
Other (eg, pancreatic diseases, feeding disorders, rumination disorder)		15.6 (24)
Providers seeing patients in practice
Physician		95.5 (147)
Physician assistant		11.0 (17)
Fellow		47.4 (73)
Nurse		53.9 (83)
Nurse practitioner		74.0 (114)
Psychologist		45.5 (70)
Social worker		53.9 (83)
Nutritionist/dietician		74.7 (115)
Program coordinator		12.3 (19)
Medical assistant		33.8 (52)
Other (eg, fitness trainer, occupational and speech therapist, surgeon, pharmacist)		9.1 (14)

Table 2 Adherence monitoring practices (n=154)

Practice characteristic	% (n)
Monitoring as standard clinical care (% yes)	74.7 (115)
Patient criteria for monitoring
All patients	55.8 (86)
Subset (eg, patients with IBD, celiac disease, or liver transplant, patients with adherence difficulties, patients on medication for which drug levels are monitored)	44.2 (68)
Tasked with monitoring patient adherence
Physician	75.3 (116)
Physician assistant	8.4 (13)
Fellow	26.0 (40)
Nurse	42.2 (65)
Nurse practitioner	47.4 (73)
Psychologist	19.5 (30)
Social worker	12.3 (19)
Nutritionist/dietician	11.0 (17)
Program coordinator	3.9 (6)
Medical assistant	5.2 (8)
Other (eg, pharmacist, research coordinator)	4.5 (7)
No one is responsible for monitoring adherence	12.3 (19)
Monitoring frequency
Once yearly	3.2 (5)
Twice yearly	1.3 (2)
At every patient visit	70.1 (108)
Depends on the patient	20.8 (32)
Never	7.1 (11)
Other	0.6 (1)
Use of screening measures (% yes)	24.7 (38)
Screening measure type
MMAS	12.3 (19)
MAM	0.6 (1)
BMQ	4.5 (7)
MARS	1.3 (2)
AMBS/PMBS	0.6 (1)
Other (eg, TRAQ, measure developed internally)	7.8 (12)
Screening measure frequency
Once yearly	1.3 (2)
Twice yearly	0.0 (0)
At every patient visit	21.4 (33)
Depends on the patient	2.6 (4)
Never	0.0 (0)
Other	1.3 (2)
Screening measure data usage
Reviewed with patient and family	18.8 (29)
Reviewed by medical team	17.5 (27)
Used to make referrals for targeted adherence intervention	5.2 (8)
Used to develop action plan to improve adherence	12.3 (19)
Used to make changes to patient’s treatment regimen	13.0 (20)
Research	5.2 (8)
Quality improvement	10.4 (16)
Data not currently being used	0.6 (1)
Additional monitoring/measurement methods
Patient self-report	87.7 (135)
Parent/caregiver report	78.6 (121)
Provider estimates	20.1 (31)
Pharmacy records	31.2 (48)
Pill counts	1.9 (3)
Blood assays/lab values	51.3 (79)
Electronic monitoring (eg, electronic pill bottle, electronic pill box)	0.6 (1)
Response to treatment/medication	49.4 (76)
Disease severity	24.7 (38)
Other (eg, home videos)	1.3 (2)
None	5.8 (9)
Rating of adherence monitoring in clinic/practice (mean ± SD)	2.96±1.29
Poor	9.1 (14)
Fair	32.5 (50)
Good	28.6 (44)
Very good	20.8 (32)
Excellent	1.3 (2)
N/A: we do not monitor adherence	7.8 (12)

Abbreviations: IBD, inflammatory bowel disease; MMAS, morisky medication adherence scale; MAM, medical adherence measure; BMQ, brief medication questionnaire; MARS, medication adherence rating scale; AMBS/PMBS, adolescent/parent medication barriers scale, TRAQ, transition readiness assessment questionnaire; N/A, not applicable.

Table 3 Adherence intervention practices (n=154)

Practice characteristic	% (n)
Provision of adherence intervention for poor adherence (% yes)	70.1 (108)
Adherence intervention type
Education on consequences of poor adherence	64.3 (99)
Education on strategies for improving adherence	61.7 (95)
Modeling appropriate way to carry out treatment plan	20.1 (31)
Pill swallowing training	26.0 (40)
Increased provider supervision/monitoring	20.8 (32)
Increased parental supervision/monitoring	35.1 (54)
Written treatment plans	32.5 (50)
Simplifying treatment regimen	48.7 (75)
Changing treatment regimen	33.1 (51)
Identifying adherence barriers	52.6 (81)
Problem solving to target adherence barriers	45.5 (70)
Use of electronic reminders (eg, alarm, texting)	27.9 (43)
Electronic monitoring (eg, MemsCap, Maya pillbox, MedSignals)	3.2 (5)
Other (eg, referral to Behavioral Medicine)	0.6 (1)
Intervention provider
Physician	31.2 (48)
Nursing staff	51.9 (80)
Nurse practitioner	37.7 (58)
Psychologist	26.6 (41)
Social worker	14.9 (23)
Other (eg, child life specialist, pharmacist, OT)	4.5 (7)
Intervention modality
Face-to-face during clinic visit	70.1 (108)
Over the phone	34.4 (53)
Via educational handouts	22.1 (34)
Via web-based education	3.9 (6)
Other	0.0 (0)
Rating of adherence intervention in clinic/practice (mean ± SD)	2.84±1.29
Poor	14.3 (22)
Fair	27.9 (43)
Good	32.5 (50)
Very good	16.9 (26)
Excellent	1.9 (3)
N/A: we do not provide adherence intervention	6.5 (10)

Abbreviations: OT, occupational therapist; N/A, not applicable.

Table 4 General practice perspectives (n=154)

Practice characteristic	% (n)
Poor/low adherence defined
Patient misses at least 25% of medication doses	49.4 (76)
Patient misses at least 50% of medication doses	37.0 (57)
Patient misses at least 75% of medication doses	2.6 (4)
Patient misses at least 100% of medication doses	0.6 (1)
Other (eg, combination of factors, missed appointments, missed labs, poor follow-through with behavior plan)	10.4 (16)
Perceived importance of routine adherence monitoring in clinical practice	4.57±0.57
Not important at all	0.0 (0)
Not important	0.0 (0)
Neutral	3.9 (6)
Important	35.1 (54)
Very important	61.0 (61)
Perceived impact of medication adherence on patients’ clinical outcomes	4.79±0.54
None	0.6 (1)
Very little	0.0 (0)
Neutral	1.9 (3)
Some	14.9 (23)
A lot	82.5 (127)
Perceived ability to elicit change in patients’ adherence behaviors	4.11±0.58
None	0.6 (1)
Very little	0.6 (1)
Neutral	5.8 (9)
Some	72.1 (111)
A lot	20.8 (32)
Perceived barriers to routine adherence monitoring in clinical care	64.3 (99)
Lack of manpower and resources	63.6 (98)
Lack of staff with skills/expertise to target adherence and provide intervention	73.4 (113)
Lack of clinic time	18.8 (29)
Lack of clinic space	8.4 (13)
Adherence is not a priority of our clinical care	3.9 (6)
Other (eg, insurance reimbursement)
Perceived individual responsible to provide adherence intervention
Nursing staff	73.4 (113)
Physician	91.6 (141)
Nurse practitioner	70.1 (108)
Psychologist	54.5 (84)
Social worker	46.1 (71)
Other (eg, parents, pharmacist)	6.5 (10)
Primary adherence barriers for children and adolescents
Forgetfulness			61.7 (95)
Poor organization			46.8 (72)
Interference with extracurricular activities			27.3 (42)
Difficulty swallowing pills			10.4 (16)
Side effects			19.5 (30)
Being away from home			11.0 (17)
Changes in daily schedule/routine			25.3 (39)
Not wanting to feel different from other youth			40.9 (63)
Belief that medication is not working			21.4 (33)
Complexity of medication regimen			22.7 (35)
Misunderstanding directions for taking medications			11.7 (18)
Feeling fine, being asymptomatic			54.5 (84)
Cost			7.8 (12)
Other (eg, taste/texture of medication, parent attitudes)			5.2 (8)
Proportion of children (ages 0–12) taking <80% of prescribed medication
<25%		47.4 (73)
26%–50%		42.9 (66)
51%–75%		7.1 (11)
>75%		2.6 (4)
Proportion of adolescents (ages 13+) taking <80% of prescribed medication
>25%		14.9 (23)
26%–50%		51.3 (79)
51%–75%		29.9 (46)
>75%		3.9 (6)