Table 1.
Study Characteristics
| 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 | |
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)