Framework for assessing quality of care for inflammatory bowel disease in Sweden

Table 1 Overview of the quality framework presenting definitions, purposes, data sources and operational definitions for the adopted quality measures as well as properties of the applied models

	Characteristics of measures included in the framework					Properties of the models included in the framework
	Quality measure	Definition of measure	Data source and data collection	Operational definition of measure	Purposes for the measure adapted from Behn	Quality dimensionaccording to the clinical value compass	Quality components as part of the quality model of Donabedian
Patient data	Diagnosis	Inflammatory bowel disease	Local gastro registry	Crohn’s disease and ulcerative colitis	Control, evaluation	Clinical dimension	Outcome
	Gender	Sex	Local gastro registry	female:male	Control, learning	Clinical dimension	Structure
	Age		Local gastro registry	Age [mean (SD)] range	Control, learning	Clinical dimension	Structure
	Disease duration	Début year	Local gastro registry	Years since time of diagnosis [mean (SD)] range	Control, evaluation	Clinical dimension	Outcome
Laboratory measures	Hemoglobin	Blood sample enabling detection of anemia associated with chronic disease, blood loss, or iron deficiency	Local gastro registry Tests were performed at the nearest primary care center and reported electronically	Cut-off points were defined as: mean (SD) normal ≥ 120 g/L, anemia 100-119 g/L severe anemia < 100 g/L missing	Control, evaluation	Clinical dimension	Outcome
Medication	Prescribed medicine	Currently prescribed preventive medication	Local gastro registry	Prescribed medication: 5-ASA cortisone immunosuppressive anti-TNF-α no medication	Control, evaluation	Clinical dimension	Process
Surgical interventions	Incidence of surgery	Surgical interventions associated with IBD	ERS, searched for ICD codes for surgical interventions and IBD once a year	Type and numbers of surgical interventions: colectomy hemicolectomy loop ileostomy perianal/fistula/ stricture incision revision abdominal scar	Evaluation	Clinical and cost dimension	Process
	Tumor incidence	Incidence of gastrointestinal tumors associated with IBD	Data from the national tumor registry retrieved once a year	Number and type of intestinal tumors associated with IBD according to diagnosis in records as ICD code	Evaluation	Clinical and cost dimension	Outcome
Quality of life	The Short Health Scale, SHS	SHS is a health related quality of life questionnaire consisting of four questions graded on a 6 point Likert scale.	Local gastro registry	Percent scoring 1 to 3 representing that the goal of the care was reached symptoms functioning worry wellbeing	Evaluation	Functional dimension	Outcome
Access to care	Waiting time	Referral from primary to secondary care	Local administrative data base	Number of days from the referral being sent from the primary care physician until the patient received a scheduled consultation at the outpatient clinic	Motivation, budget, learning, evaluation, promotion	A proxy for the satisfaction dimension	Process and outcome
	Waiting time for known patients	An acute visit is used for an urgent need of assessment due to deteriorating disease	Local administrative data base	The clinic’s ability to offer an acute visit within two days after contact for known IBD patients	Motivation, budget, learning, evaluation, promote	A proxy for the satisfaction dimension	Process
	Contact route (before being admitted to hospital)	The place for the decision to admit the patient for inpatient care, i.e. either at the ER or the outpatient clinic	ERS Contact route was decided after finding indicators such as: where the note was written, if the note was written by an on call colleague or a gastroenterologist	The ERS was searched to find out where the decision was either at the ER or from the outpatient clinic	Learning	Cost and a proxy for the satisfaction dimension	Process
Hospitalization	Hospitalization	Individual and total numbers of admittances for IBD patients	ERS was searched for ICD codes and national data was retrieved from the National Board of Health and Welfare	ERS documented ICD code for IBD and hospitalisation	Motivation, budget, evaluation	Cost dimension	Process and outcome

IBD: Inflammatory bowel disease; ICD: International classification of diseases; ERS: Electronic record system.

Table 2 Quality framework applied to the inflammatory bowel disease care setting at the Department of Internal Medicine in Highland Hospital, Eksjö, Jönköping County, Sweden

	Quality measures from 2008	Crohn’s disease	Ulcerative colitis
Patient data	Diagnosis	194	261
	Gender
	Female:male	44%:56%	42%:58%
	Age (yr)
	Mean (SD)	53 (± 15)	51 (± 15)
	Range	18-90	20-91
	Disease duration
	Years since time of diagnosis
	Mean (SD)	20 (± 13)	14 (± 10))
	Range	0-58	0-53
Laboratory measures	Hemoglobin
	Mean (SD)	140 (± 12)	143 (± 13)
	Normal ≥ 120 g/L	95%	96%
	Anemia 100-119 g/L	4%	4%
	Severe anemia < 100 g/L	< 1%	0
	Missing	16%	17%
Medication	Prescribed medicine
	5-ASA	43%	56%
	Cortisone	16%	4%
	Immunosuppressant	34%	12%
	Anti-TNF-α	8%	2%
	No medication	31%	40%
Surgical	Incidence of surgery
interventions	Type and numbers of surgical interventions:
	Colonectomy		3
	Hemicolectomy	1	1
	Loop ileostomy		1
	Perianal/fistula/stricture incision	3	1
	Revision abdominal scar	1
	Tumor incidence
	Number and type of intestinal tumors associated with IBD according to diagnosis in records as ICD code	0	0
Quality of life	The Short Health Scale, SHS
	Percent scoring 1 to 3 representing that the goal of the care was reached
	symptoms	95%	98%
	functioning	88%	95%
	worry	91%	94%
	wellbeing	97%	96%
Access to care	Waiting time
	Number of days from the referral being sent from the primary care physician until the patient received a scheduled consultation at the outpatient clinic	< 3 wk	< 3 wk
	Waiting time for known patients
	The clinic’s ability to offer an acute visit within two days after contact for known IBD patients	< 2 d	< 2 d
	Contact route (before being admitted to hospital)
	The ERS was searched to find out where the decision was either at the ER or from the outpatient clinic	50%/50%	50%/50%
Hospitalization	Hospitalization
	ERS documented ICD code for IBD and hospitalisation	29	17

Data from the annual check-up 2008. IBD: Inflammatory bowel disease; ICD: International classification of diseases; 5-ASA: 5-aminosalicylic acid; ERS: Electronic record system; SHS: Short health scale.