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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
Othera 4
Multi-siteb 4
Study Design Quantitative 64
Qualitative 28
Mixed Methods 9
Tool Development or Validationc 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
Otherf 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
  1. aIsrael, Turkey, South Africa and Jordan;
  2. bInvolving more than one country;
  3. cOf all studies (counted twice)
  4. d n = 5 did not specify population, ‘children and adults’ accounted for studies involving children and their parents;
  5. eRefer to Fig. 2 for more details about grouping
  6. 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;
  7. 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)
  8. hOut of 98 papers – three studies did not use specific measures e.g. economic evaluation, videographic analysis, normalization process theory on previous interview data
  9. 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)