Development of a Standard Set of Outcome Domains and Proposed Measures for Chronic Obstructive Pulmonary Disease in Primary Care Physical Therapy Practice in the Netherlands: a Modified RAND/UCLA Appropriateness Method

Figures & data

Table 1 Steps During the Consensus-Driven RAND/UCLA Modified Delphi Technique

Step	Participants	Goal	(Aimed) Results
1 Explorative review of the literature	Research team (AV, SD, RN, PW)	Identification of valid structure-, process- and outcome (PROMs, PREMs, performance measures) measures for COPD that are described in scientific literature. Screening for methods to classify patients in subgroups.	Selection and analysis of all eligible measures on their validity and reliability. Selection methods to classify patients in subgroups.
2 First online survey round	22 out of 37 physical therapists specialized in COPD, scientific experience or representing patients with COPD	Anonymous rating of measures with a 9-point Likert scale on relevance and feasibility.	The median score of every measure was calculated.
3 Expert committee	Five participants experts of Step 2	Results of the online survey round 1 was interpreted and discussed with experts	First interpretation of the results of the first online survey presented and discussed
4 Interview with patients	Nine patients with COPD and treated by physical therapists last year	Patients views measurements in clinical practice	The patients perspectives on outcome domains and the use of measurement instruments which were presented during the introduction of the consensus meeting (Step 5)
5 Consensus meeting	19 out of 37 participants of Step 2 and members of the advisory board	Nominal group technique was used to discuss the draft set. Finally, the participants voted on feasibility and relevance.	Measures were included if 80% or higher voted yes for inclusion. Between 60–80% yes were deferred and rerated in the second online survey and between 0 and 60% yes were excluded.
6 Expert committee and patient representatives	Participants of Step 3 and the patient representative of the advisory board	The bottlenecks from Step 5 will be discussed and searched for possible solutions	Alternatives for measures without consensus in Step 5.
7 Second online survey round	23 out of 37 participants of the first online survey (Step 2)	The participants rated the second draft set and if needed alternatives on a 9-point Likert scale	Measures were included when all participants rated a median of 7 or higher on the 9-point Likert scale.
8 Final approval of the advisory board	Advisory board (MJS, LV, HW, AW, AT, ML)	Finally, the advisory board was asked to accept the final set	Final acceptance of the standard set

Table 2 Results of Step 2: First Online Survey and Step 5: Consensus Meeting

Measures	Relevance (Step 2)	Feasibility (Step 2)	Inclusion for the Final Outcome Set (Step 5)
Structure measure	Median	Median	Yes	No
Characteristics of practices and physical therapists	8	8	85%**	15%
Process measures	Median	Median	Yes	No
History taking described in the EHR	5	7	0%	100%
Treatment plan described in the EHR	6	8	0%	100%
Quality of life measure for patients with high burden of disease*			92%**	8%
Outcome measures	Median	Median	Yes	No
Improvement in activities	7	7	0%	100%
Number of treatment sessions	3	8	7%	93%
Treatment costs*			57%	43%
Measure physical activity*			100%**	0%
Patient Reported Outcome Measures (PROMs)	Median	Median	Yes	No
Vragenlijst Fysieke Activiteit (VFA)	4	7	17%	83%
International Physical Activity Questionnaire (IPAQ)	7	8	0%	100%
Medical Research Council Dyspnea (MRC)	6,5	9	100%**	0
COPD Assessment Test (CAT)	6	7	0%	100%
Nijmegen Screenings instrument (NCSI)	6	6	0%	100%
Clinical COPD Questionnaire (CCQ)	8	9	100%**	0%
Chronic Respiratory (Disease) Questionnaire (CR(D)Q)	6	6	0%	100%
St George’s respiratory questionnaire (SGRQ)	6	5	0%	100%
Quality of life for respiratory illness questionnaire (QoLRIQ)	5	5	0%	100%
Respiratory Illness Questionnaire-monitoring (RIQ-mon 10)	5	6	0%	100%
The Assessment of Burden of COPD index	7	8	0%	100%
The Assessment of Burden of COPD tool*			100%**	0%
Patient Reported Experience Measures (PREMs)	Median	Median	Yes	No
Global Perceived Effect (GPE)	6	7	100%**	0%
PREM-P	7	4	0%	100%
Physical performance measures	Median	Median	Yes	No
6-Minute  Walk Test (6 MWT)	8	9	100%**	0%
Incremental Shuttle Walk Test (ISWT)	6	5	0%	100%
Hand Held Dynamometrie (HHD)	7	8,5	0%	100%
Using the HDD (with a Microfet™) for quadriceps strength*			100%**	0%
Method to classify patients in subgroups based on the burden of disease	Appropriateness	Feasibility
	Median	Median
Classify patients in subgroups based on the burden of disease	7	7

Notes: *Newly suggested during the consensus meeting in Step 5, these measures will be discussed with the expert group in Step 6. **Final inclusion in the standard set after rating. 

Table 3 Final Standard Set

Nr	Domain	Measure	Guided Measurement Protocol
		A: mandatory for all patients with COPD	Intake	Every 3 months	End
1	Practice/physical therapist level	Characteristics of practices and physical therapists	Once a year
2	Physical capacity	6-Minute Walk Test (6 MWT)	X	X	X
3	Quality of life	Clinical COPD Questionnaire (CCQ)	X	X	X^a
4	Experience	Global Perceived Effect (GPE)		X	X
		B: Conditional measures
5	Muscle strength	HDD (with a Microfet™) for quadriceps strength	X	X	X
6	Dyspnea	Medical Research Council Dyspnea (MRC)	X	X	X
		C: Exploratory measures
7	Physical activity	Accelerometer (for physical activity in daily life)
8	ABC-Tool	The Assessment of Burden of COPD tool
		D: Classifying subgroups
9	Classify in subgroups	Classify subgroups based on the Dutch care standard of the Lung Alliance.^Citation34	Once a year

Note: ^aAfter ≥12 months, the CCQ needs only to be measured once a year.

Table 4 Case Mix Variables

Variable	Description
Age	Date of birth
Gender	Gender at birth
Weight	Weight in kg
Length	Length in cm
Post FEV1	In mL
Smoke history	Currently smoking If yes, note how many cigarettes a week Did smoked Never smoked
Comorbidities	Cardiac disorders Vascular disorders Disorders of bones, muscles or the skin (e.g. contractures, osteoarthritis) Psychosocial disorders (e.g. depression, addictions) Endocrine and metabolic disorders, generalized infections, poisoning (osteoporosis, diabetes mellitus) Other
Most important treatment goals treatment goal	Dyspnea Exercise capacity Physical activity Muscle strength Self-management
Number of exacerbations last year	0 1 2 4 or more

Salome PL, in ‘t Veen JC, Euving E, et al. Dutch Lung Alliance (Long Alliantie Nederland (LAN)) COPD Zorgstandaard 2016. Available from: http://www.longalliantie.nl/files/9014/5578/9160/LAN_Zorgstandaard_COPD-2016-2.pdf. Accessed December 01, 2016

 Google Scholar