Measuring the burden of treatment for chronic disease: implications of a scoping review of the literature

Sav, Adem; Salehi, Asiyeh; Mair, Frances S.; McMillan, Sara S.

doi:10.1186/s12874-017-0411-8

BMC Medical Research Methodology

Table 1 Study Characteristics

From: Measuring the burden of treatment for chronic disease: implications of a scoping review of the literature

Characteristic		No. of studies
Geographical Region	Northern America	49
	Europe	18
	United Kingdom	16
	Asia-Pacific	10
	Other^a	4
	Multi-site^b	4
Study Design	Quantitative	64
	Qualitative	28
	Mixed Methods	9
	Tool Development or Validation^c	20
Sample size	<50	28
	50–100	11
	100–500	32
	500–1000	9
	1000–10,000	15
	>10,000	6
Study Participants ^d	Children & Adolescents	7
	Parents	6
	Adults (>18 years)	61
	Adults (>60 years)	12
	Children & Adults	10
Groupings ^e	Group 1	16
	Group 2	50
	Group 3	35
Therapeutic Area	Cancer/Tumour	18
	Cardiovascular	5
	Diabetes	13
	Psychological	7
	Respiratory	17
	Dermatological	2
	Other^f	15
	Co-morbidities or various	24
Treatment Burden ^g	Medication	64
	Time/Travel	32
	Financial	22
	Healthcare Access	21
	Other: Lifestyle	16
	Other: treatment preferences/decision/	6
	Other: Interpersonal challenges	3
	Other: carer burden	3
Measures ^h	Semi-structured questions	31
	Survey questions	24
	Prescription burden	15
	Disease specific toolⁱ	28

^aIsrael, Turkey, South Africa and Jordan;
^bInvolving more than one country;
^cOf all studies (counted twice)
^d n = 5 did not specify population, ‘children and adults’ accounted for studies involving children and their parents;
^eRefer to Fig. 2 for more details about grouping
^fIncludes: chronic/end-stage kidney disease, liver transplant, spasmodic dysphonia, proliferative lupus nephritis, intensive care, gastroesophageal reflux disease, primary ciliary dyskinesia, coeliac disease, systemic lupus erythematosus, percutaneous endoscopic gastrostomy;
^gSome papers included more than one dimension of treatment burden (will not add to 101). Other aspects of treatment burden were identified, e.g. dietary restrictions (lifestyle), the influence of treatment burden on treatment preferences (treatment preferences/decisions), responses from others (interpersonal challenges), and impact on carers (carer burden)
^hOut of 98 papers – three studies did not use specific measures e.g. economic evaluation, videographic analysis, normalization process theory on previous interview data
ⁱIncluded: versions of Cystic Fibrosis Questionnaire Revised (CFQ-R; n = 7); Childhood Illness Attitude Scales (CIAS), versions of Quality of Life Bronchiectasis (QOL-B) (n = 3 each); Burden of Insulin Treatment, Treatment Related Impact Measure-Diabetes (Trim-D), Retinopathy Treatment Satisfaction Questionnaire (RetTSQ), Survey of the Adolescent Treatment Experience (SATE), Willingness to Accept Life-Saving Treatment (WALT), Elderly Diabetes Burden Scale (n = 2 each); Patient Benefit Index - standard version for chronic skin diseases (PBI-S), Diabetes Medication Satisfaction (DiabMedSat), Functional Assessment of Chronic Illness Therapy-Treatment Satisfaction-Bone Treatment Convenience and Satisfaction Questionnaire (FACIT-TS-BTCSQ), Medication Cost Reduction Strategies (MCRS), Revised Illness Perception Questionnaire (IPQR), Treatment Burden Index (TBI), Side effect rating scale, Dermatology Life Quality Index (DLQI), GERD Treatment scale, Quality of Life in patients with primary ciliary dyskinesia (QOL–PCD), Insulin Treatment Experience Questionnaire (ITEQ), Markov model of diabetes outcomes (n = 1 each)

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