Indirect Costs and Family Burden of Pediatric Crohnʼs Disease in the United States

Kahn, Stacy A.; Lin, Chia-Wei; Ozbay, Burak A; Wang, Anthony; Chao, Jingdong; Skup, Martha

doi:10.1097/mib.0000000000001268

Cited by 18 publications

(20 citation statements)

References 16 publications

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“…(p = .007) (Kahn et al, 2017). When the work loss is translated into annual productivity costs, the cost is $5243 for patients and $4121 for controls (p = .004) (Kahn et al, 2017).…”

Section: Work and Financial Impactsmentioning

confidence: 99%

A systematic review of the impact of inflammatory bowel disease (IBD) on family members

Thapwong

Norton

Rowland

et al. 2022

Journal of Clinical Nursing

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Background and Aims Inflammatory Bowel Disease (IBD) affects patients and their family members, but most reviews have focused only on patients themselves. This review synthesises evidence on the impact of IBD on family members. Methods A systematic review was undertaken, searching six bibliographic databases, focusing on the impact of IBD on family members, coping strategies, and interventions. A narrative synthesis was conducted. This review was reported following the Preferred Reporting Items for Systematic Reviews (PRISMA). Results 3258 records were identified; 33 papers (2748 participants) were included. Three themes were identified: impact of IBD on family members; coping strategies for family members to overcome the impact of IBD; and the support needed by family members. IBD affects family members' well‐being in many ways, including their emotional well‐being, relationship with the patient, social life, work and finances, and leisure time and travel. Family members use adaptive coping patterns such as acceptance, developing resilience, and emotional support from others. Maladaptive coping patterns such as denial of diagnosis, self‐distraction, and self‐blame were also evident. Family members reported that they needed better information about IBD, support groups, and better access to a counsellor or psychologist. No studies assessed interventions to relieve family members' burden. Conclusions Family members of IBD patients require psychosocial support to facilitate better family function, cohesion, and enhanced coping strategies. Healthcare services should adopt a multidisciplinary care model with a bio‐psycho‐social approach including an IBD nurse, family therapist, and psychologist, to improve quality of life for patients and their families.

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“…(p = .007) (Kahn et al, 2017). When the work loss is translated into annual productivity costs, the cost is $5243 for patients and $4121 for controls (p = .004) (Kahn et al, 2017).…”

Section: Work and Financial Impactsmentioning

confidence: 99%

A systematic review of the impact of inflammatory bowel disease (IBD) on family members

Thapwong

Norton

Rowland

et al. 2022

Journal of Clinical Nursing

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“…We defined caregivers as individuals currently caring for a family member or friend living with a chronic condition. There were some differences from the way previous studies defined caregivers (Giovannetti et al, 2009;Ganapathy et al, 2015;Lerner et al, 2015;Wang et al, 2016;Kahn et al, 2017;Fujihara et al, 2019;Hoefman et al, 2019;Kuenzig et al, 2019;Landfeldt et al, 2019), recognizing some studies did not provide a definition (Kahn et al, 2017;Fujihara et al, 2019). Other studies did not specify care recipients having a chronic condition in their caregiver definitions, but review of these studies showed that most of their care recipients had a chronic condition of some type (Giovannetti et al, 2009;Ganapathy et al, 2015;Wang et al, 2016;Kuenzig et al, 2019;Landfeldt et al, 2019).…”

Section: Methodsmentioning

confidence: 92%

“…About 7.91% of their work time were missed in the past week and 35.36% of their productivity while they were working were affected. Kahn et al (2017) found that caregivers, of a group of pediatric inflammatory bowel disease patients, had an unadjusted 214.4 ± 171.5 annual hours of work loss. This was translated to an annual lost productivity cost of $5243 USD per caregiver.…”

Section: Introductionmentioning

confidence: 97%

“…Studies have consistently demonstrated that chronic conditions have a significantly negative impact on work productivity of patients (Zhang et al, 2016(Zhang et al, , 2018. However, beyond the direct impact on patients, chronic conditions such as inflammatory bowel disease, dementia, and chronic kidney disease have also been shown to have a significant impact on the work productivity of caregivers who are caring for their family members or friends who have a chronic condition (Ganapathy et al, 2015;Wang et al, 2016;Kahn et al, 2017;Fujihara et al, 2019;Kuenzig et al, 2019). For example, Fujihara et al (2019) found that among employed family caregivers of people with dementia, the average caregiving time was 2.14 h per day.…”

Section: Introductionmentioning

confidence: 99%

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Valuation of Lost Productivity in Caregivers: A Validation Study

et al. 2021

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ObjectiveThis study aimed to: (a) adapt the previously validated Valuation of Lost Productivity (VOLP) questionnaire for people with health problems, to a caregiver version to measure productivity losses associated with caregiving responsibilities, and (b) evaluate measurement feasibility and validity of an online version of the caregiver VOLP questionnaire.MethodsA mixed methods design was utilized. Qualitative methods, such as reviewing existing questionnaires that measured caregiver work productivity losses and performing one-on-one interviews with caregivers, were used for VOLP adaptation and online conversion. Quantitative methods were used to evaluate feasibility and validity of the online VOLP. The Work Productivity and Activity Impairment (WPAI) questionnaire for caregivers was included to compare its absenteeism and presenteeism outcomes and their correlations with VOLP outcomes.ResultsWhen adapting the VOLP for caregivers, our qualitative analysis showed the importance of adding three major components: caregiving time, work productivity loss related to volunteer activities and caregivers’ lost job opportunities. A total of 383 caregivers who completed online survey were included in our final quantitative analysis. We found small Spearman rank correlations between VOLP and WPAI, observing a larger correlation between their absenteeism [r = 0.49 (95% confidence interval: 0.37–0.60)] than their presenteeism [r = 0.36 (0.24–0.47)]. Correlations between VOLP outcomes and total caregiving hours were larger for absenteeism [r = 0.38 (0.27–0.47)] than presenteeism [r = 0.22 (0.10–0.34)]. Correlations between WPAI outcomes and total caregiving hours were smaller for absenteeism [r = 0.27 (0.15–0.38)] than presenteeism [r = 0.35 (0.23–0.46)].ConclusionThe study provides evidence of the feasibility and preliminary validity evidence of the adapted VOLP caregiver questionnaire in measuring productivity losses due to caregiving responsibilities, when compared with the results for WPAI and the results from the previous patient-VOLP validation study.

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“…In a US study of pediatric IBD patients using health insurance databases, 200 patients with Crohn’s disease and their caregivers were compared with age-matched controls without IBD and their caregivers. Unadjusted annual hours of work loss were 214.4 ± 171.5 and 169.6 ± 157.5 for caregivers of Crohn’s disease patients and controls, translating to annual lost productivity costs of $5243 USD and $4121 USD per caregiver, respectively (44).…”

Section: Caregiver Costsmentioning

confidence: 99%

The Impact of Inflammatory Bowel Disease in Canada 2018: Indirect Costs of IBD Care

Kuenzig

Lee

El‐Matary

et al. 2018

Journal of the Canadian Association of Gastroenterology

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The indirect cost of illness represents the portion of human capital that is foregone due to lost productivity of patients and their caregivers and out-of-pocket healthcare expenses borne directly by patients. Indirect costs among persons with inflammatory bowel diseases (IBD) may be substantial because disease onset occurs during the teens and 20s for most persons and is lifelong. Thus, most persons with IBD are affected during periods of study or employment. The literature on indirect health-related costs among persons with IBD is limited, particularly with regard to Canadian studies. The greatest burden of indirect costs in this population relates to absenteeism and presenteeism among working individuals and premature retirement. However, costs related to reduced professional development and personal achievement due to illness—as well as caregiver costs—are largely unknown. After being extrapolated from multiple sources, the total indirect health-related cost of IBD in Canada in 2018 is estimated to be $1.29 billion Canadian dollars. Notably, this may be a significant underestimate because costs relating to presenteeism, reduced achievement and caregiver burden could not be estimated and are excluded from this calculation. Highlights Indirect costs account for a major portion of total healthcare costs among persons with inflammatory bowel disease (IBD) and are higher than indirect costs among persons without IBD. Persons with IBD are more likely to require time off work (absenteeism) and have reduced productivity at work (presenteeism) due to illness as compared with persons without IBD. Premature retirement and long-term disability are major factors contributing to indirect costs among IBD patients. A substantial proportion of individuals with IBD pay out-of-pocket for complementary and alternative medicines. After being extrapolated from multiple sources, the total annual indirect cost of IBD in Canada is estimated to be $1.29 billion CAD in 2018, or $4781 CAD per person with IBD. Key Summary Points The total indirect economic burden of IBD in Canada is estimated to be $1.29 billion CAD in 2018, or roughly $4781 CAD per person with IBD. This estimate comprises lost wages related to sick days and disability, premature retirement and premature death, and out-of-pocket costs. Losses from presenteeism, reduced professional development and caregiver burden are not included due to insufficient data on the cost impact of these factors. In a meta-analysis of studies between 1994 and 2014, the annual indirect cost of absenteeism for IBD patients ranged from $515.67 USD (USA) to $14,727 USD (Germany) per patient per annum (pooled estimate $7189 USD), after adjusting for purchasing power disparity. A large US survey found that, on average, IBD patients incurred an extra 4.8 days off of work and $783 USD in exces...

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Indirect Costs and Family Burden of Pediatric Crohnʼs Disease in the United States

Abstract: Caregivers of pediatric CD patients have significantly higher loss in productivity costs compared with controls.

Cited by 18 publications

References 16 publications

A systematic review of the impact of inflammatory bowel disease (IBD) on family members

A systematic review of the impact of inflammatory bowel disease (IBD) on family members

Valuation of Lost Productivity in Caregivers: A Validation Study

The Impact of Inflammatory Bowel Disease in Canada 2018: Indirect Costs of IBD Care

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