Impact on caregivers of adult patients receiving parenteral support for short‐bowel syndrome with intestinal failure: A multinational, cross‐sectional survey

Background: Home parenteral nutrition (HPN) is the recommended treatment in patients with chronic intestinal failure (CIF). HPN is associated with a worsening of patients' quality of life and has a dramatic impact on personal and familial daily life.Little is known about the informal caregiver burden of patients receiving HPN.Aim: To assess informal caregiver burden and the factors associated with moderateto-severe caregiver burden in patients treated with HPN.Methods: Informal caregivers of consecutive patients treated with HPN in a French nutrition referral center were invited to participate in a survey between January 2021 and June 2021. They had to fill out an anonymous standardized self-questionnaire evaluating burden by the Zarit Burden Interview (ZBI) and depression and anxiety symptoms by the Hospital Anxiety and Depression Scale (HADS) score since HPN introduction.Results: Among the 87 HPN patients having informal caregivers, 53 (61%) completed the questionnaire. Thirty (57%) informal caregivers were women. The caregiver's median age was 62 years (IQR, 21.0). Twelve (22%) expressed moderate to severe burden (ZBI score,. In a multivariate analysis, the caregiver's male gender (odds ratio [OR], 16.45; 95% CI, 2.30-238.75; P = 0.014) and the number of simultaneous infusions per day >1 (OR, 9.92; 95% CI, 1.35-121.60; P = 0.0038) were associated with a moderate to severe burden. Twenty caregivers reported anxious and depressive symptoms with an elevated HADS score. Conclusion:In this prospective survey, a minority of informal caregivers of patients with CIF being treated with HPN expressed moderate to severe burden. The caregiver's male gender was associated with a higher burden in patients with CIF.

Section: Discussionmentioning

confidence: 98%

Section: Discussionmentioning

confidence: 99%

Male gender is associated with informal caregiver burden in patients with chronic intestinal failure treated with home parenteral nutrition

Castinel

Pellet

Laharie

et al. 2022

“…32 The impact on caregivers supporting patients with SBS-IF was recently reported. 19 Much like the patients in this study, caregivers reported difficulty with working full-time and spending time with family and friends.…”

Section: Discussionmentioning

confidence: 67%

“…The instrument generates four scores that relate to absenteeism, presenteeism, work productivity, and activity impairment. The scores are given as percentages, with higher values indicating greater impairment and reduced work productivity 19 …”

Section: Methodsmentioning

confidence: 99%

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Impact of intestinal failure and parenteral support on adult patients with short‐bowel syndrome: A multinational, noninterventional, cross‐sectional survey

Jeppesen

Shahraz

Hopkins

et al. 2022

Self Cite

Background Patients with short‐bowel syndrome and intestinal failure (SBS‐IF) require parenteral support (PS) and experience various symptoms and comorbidities. This survey assessed the impact of SBS‐IF and PS on patients and their health‐related quality of life (HRQoL). Methods An online survey of adult patients who had a self‐reported clinician diagnosis of SBS‐IF and were receiving PS was conducted in France, Germany, Italy, the UK, and the USA. Patients reported symptoms, comorbidities, and treatment satisfaction; the Work Productivity and Activity Impairment Questionnaire: Specific Health Problem (WPAI:SHP) and the Home Parenteral Nutrition‐Quality of Life (HPN‐QoL) questionnaire assessed impact on work and HRQoL, respectively. Results Patients (N = 181; aged 52.0 ± 15.1 years; 56.9% women) experienced fatigue (75.1%), anemia (49.7%), and difficulty spending time with family (36.5%) and friends (30.4%). A total work productivity loss of 37.5% was calculated in patients reporting employment (29.3%). Patients typically (64.0%) reported some degree of satisfaction with their PS treatment. Almost two‐thirds (59.7%) reported that their PS was either “not,” “a little,” or “moderately” convenient. The mean HPN‐QoL scores were higher for patients who were satisfied with treatment (n = 116; 17.1 ± 21.0 [median, 16.7; interquartile range, 0.0–31.7]) than for patients who were dissatisfied/neither (n = 65; 1.7 ± 19.7 [median, 0.0; interquartile range, –13.3–13.3]). Conclusions Patients with SBS‐IF who are receiving PS experience burdensome symptoms and comorbidities and report impacts on work productivity and time spent with friends and family. This study can increase awareness of the impacts of SBS‐IF and PS and how treatment satisfaction may influence patients’ health and HRQoL.

Impact on caregivers of adult patients receiving parenteral support for short‐bowel syndrome with intestinal failure: A multinational, cross‐sectional survey

Jeppesen

Chen

Murphy

et al. 2021

Self Cite

Background: Patients with short-bowel syndrome and intestinal failure (SBS-IF) require parenteral support (PS) and may need long-term home-care support. This survey assessed the impact of care provision on adult caregivers of adult patients receiving PS for SBS-IF.Methods: An online, cross-sectional survey of caregivers of adults with a self-reported physician diagnosis of SBS-IF was conducted in France, Germany, Italy, the UK, and USA. Impact on caregivers was evaluated using the 18-item Caregiver Strain Index (CSI), the Work Productivity and Activity Impairment Questionnaire: Specific Health Problem (WPAI:SHP), and self-reporting impact questionnaires.Results: Caregivers (N = 121; aged 51 ± 13.7 years; 59% women) provided assistance for a mean of 9.9 ± 12.53 years; 77% were providing care 7 days per week.Patients (51 ± 16.4 years; 56% women) of caregivers were typically family members: spouse/partner (61%), adult son/daughter (19%), or parent (10%). Caregivers reported experiencing some strain (CSI score 4 ± 3.4). Among 71 of 73 employed caregivers, the WPAI:SHP assessment showed that caregivers missed 7% ± 12.7% of work hours in the preceding week and were present but not productive at work 37% ± 23.1% of the time; 28% of caregivers reported a reduced number of working hours because of caregiving. Many caregivers reported limitations in recreational activities (53%), and ≥30% had difficulty spending time with family and friends. Caregivers (87%) also reported worrying about the patient's health.Conclusions: Caregivers of adult patients with SBS-IF experience negative daily personal impacts and loss of productivity arising from their caregiving responsibilities.