Methods used to account for caregivers’ sex and gender within studies examining the financial burden of caregivers of children and adolescents : Results from a scoping review

Figures & data

Figure 1 PRISMA flow-chart.

Notes: PRISMA figure adapted fromTricco AC, Lillie E, Zarin W, et al. PRISMA Extension for Scoping Reviews (PRISMA-ScR): checklist and Explanation. Ann Intern Med. 2018;169(7):467–473. Creative Commons.⁵¹

Table 1 Characteristics of Studies Included in the Scoping Review

Study Characteristics	N (%) Total=200
Continent
North America	55 (27.5)
Asia	49 (24.5)
Europe	41 (20.5)
Africa	34 (17.0)
Oceania	9 (4.5)
South America	8 (4.0)
Multiple^a	4 (2.0)
Study Type
Quantitative Study	180 (90.0)
Mixed Methods	16 (8.0)
Qualitative Methods	4 (2.0)
Conditions of the Child or Adolescent Being Cared for by the Caregiver
Infections/Parasitic Diseases	31 (15.5)
Congenital Diseases	23 (11.5)
Gastrointestinal Issues	21 (10.5)
Respiratory Issues	21 (10.5)
Nervous System Diseases	20 (10.0)
Brain Based Development Disabilities	15 (7.5)
Medical Interventions	13 (6.5)
Cancer	11 (5.5)
Skin Issues	6 (3.0)
Nutritional/Metabolic Issues	5 (2.5)
Kidney Issues	3 (1.5)
Inflammatory Disease	2 (1.0)
Traumatic Injuries	2 (1.0)
Fever	1 (0.5)
Mental Health Issues	1 (0.5)
Oral Health Related Conditions	1 (0.5)
Multiple^b	24 (12.0)
Number of Study Participants^c
1–100	70 (35.0)
101–200	37 (18.5)
201–300	27 (13.5)
301–400	10 (5.0)
401–500	2 (1.0)
>500	53 (26.5)
Median (Range)	172 (11–79,109)

Notes: ^aParticipants were recruited from countries spanning at least two continents. ^bStudies included caregivers of patients that could suffer from various conditions. ^cOne study did not identify the number of participants included in their analysis.

Table 2 Approaches and Measures Used to Assess Caregivers’ Economic Burden

Study Characteristics	N (%) Total=200
Number of different approaches used
1	113 (56.5)
2	75 (37.5)
3	11 (5.5)
>3	1 (0.5)
Approaches used to measure the economic burden^a
Questionnaires and Surveys	182 (91.0)
Interviews	57 (28.5)
Medical / Billing / Insurance Records or Databases	52 (26.0)
Focus Groups	3 (1.5)
Others	5 (2.5)
Measures or scales used to assess the economic burden among those that used questionnaires or surveys^b
Developed by the Investigators Conducting the Study	139 (76.4)
Previously Validated Scales	46 (25.3)
Survey Data Provided from an External Source	34 (18.7)
Cost Diary	8 (4.4)

Notes: ^aSum does not add to 200 as 87 studies used more than one approach to assess caregivers’ economic burden. ^bSum exceeds 100% as groups are not mutually exclusive.

Table 3 List of Cost Items Considered Within the Included Studies^a

Items	N (%) Total=200
Direct Medical Costs	153 (76.5)
Medication	117 (58.5)
Hospital Care / Services	114 (57.0)
Outpatient Care / Services	97 (48.5)
Diagnostics / Investigations / Lab Tests	64 (32.0)
Medical Devices / Materials	57 (28.5)
Out-of-Pocket Expenses^b	56 (28.0)
Medical Transport	23 (11.5)
Other	3 (1.5)
Direct Non-Medical Costs	148 (74.0)
Transportation	123 (61.5)
Accommodations	74 (37.0)
Out-of-Pocket Expenses, unrestricted items^b	50 (25.0)
Paid Domestic Helper	46 (23.0)
Food / Specific Diet	44 (22.0)
Informal Care	22 (11.0)
Social Services	19 (9.5)
Over-The-Counter Medication	5 (2.5)
Legal Expenses	4 (2.0)
Other	3 (1.5)
Indirect Costs	179 (89.5)
Absenteeism	115 (57.5)
Loss of Income	90 (45.0)
Changes in Work Schedule	50 (25.0)
Productivity	63 (31.5)
Loss of Leisure Time	24 (12.0)
Unspecified Time Loss	24 (12.0)
Lost Opportunities	14 (7.0)
General Financial Difficulties	11 (5.5)
Other	4 (2.0)

Notes: ^aSums can exceed 100% as studies could examine more than one cost category. ^bOut-of-pocket expenses could be directly related to or not directly related to the child’s or adolescent’s medical needs.

Table 4 Reporting of Caregivers’ Sex and Gender and Their Use Within Included Studies

Sex and Gender Considerations	N (%)
Sex considerations
Reported on the respondents’ sex	93 (46.5)
Statistical adjustment based on respondents’ sex	24 (12.0)
Adjusted for the respondents’ sex as a confounder	5 (2.5%)^a
Stratified on the respondents’ sex	19 (9.5)^a
Examined how respondents’ sex impacted on the results of the study	27 (13.5)^b
Gender considerations
Reported on the respondents’ gender	0 (0.0)

Notes: Although certain articles reported a gender variable, we considered these as a sex variables since all of them dichotomized entries into male/female. ^aNone of the studies that accounted for respondents’ sex within their analysis used both methods. ^bFourteen out of the 27 studies that examined how respondents’ sex impacted their results did not account for this variable through the use of confounding adjustment or stratification.

Tricco AC, Lillie E, Zarin W, et al. PRISMA Extension for Scoping Reviews (PRISMA-ScR): checklist and Explanation. Ann Intern Med. 2018;169(7):467–473.

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