Impact of home parenteral nutrition on family members: A national multi-centre cross-sectional study

French, Chloe; Lal, Simon; Jones, David; Sowerbutts, Anne Marie; Brundrett, Diane; Burch, Nicola; Calvert, C. C.; Cooper, Sheldon C.; Donnellan, Clare; Forbes, Alastair; Gabe, Simon; Lam, Ching; Major, Giles; Mountford, C; Muggridge, Rebecca; Natarajan, Brenavan; Neild, P; Rogers, Dan; Sharkey, Lisa; Thompson, Beth; Wheatley, Carolyn; Burden, Sorrel

doi:10.1016/j.clnu.2021.12.030

Cited by 5 publications

(3 citation statements)

References 35 publications

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“…A multi-level model was used during analysis to account for clustering within patients and recruitment sites. It was also considered that home support provided by community nurses or family caregivers may affect QoL; however, this has been reported in a cross-sectional study detailing carers’ roles in QoL in patients on HPS [ 40 ]. Caregiving was, therefore, not included here as a confounder but is an important factor to consider.…”

Section: Methodsmentioning

confidence: 99%

Investigating the Relationship between Home Parenteral Support and Needs-Based Quality of Life in Patients with Chronic Intestinal Failure: A National Multi-Centre Longitudinal Cohort Study

et al. 2023

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Home parenteral support (HPS) is an essential but potentially burdensome treatment that can affect quality of life (QoL). The aims of this longitudinal study were to understand whether any changes in HPS over time were associated with QoL. The Parenteral Nutrition Impact Questionnaire (PNIQ) was used, and data were collected on HPS prescribed at three time points. Data were analysed using multi-level mixed regression models presented as effect size and were adjusted for confounders. Study recruited 572 participants from 15 sites. Of these, 201 and 145 completed surveys at second and third time-points, respectively. PNIQ score was out of 20 with a higher score indicating poorer QoL. Any reduction in HPS infusions per week was associated with an improved PNIQ score of −1.10 (95% CI −2.17, −0.02) unadjusted and −1.34 (95% CI −2.45, −0.24) adjusted. Per day change to the number of infusions per week was associated with a change in the PNIQ score of 0.32 (95% CI −0.15, 0.80) unadjusted and 0.34 (95% CI −0.17, 0.85) adjusted. This is the largest national study to demonstrate improvements in QoL associated with HPS reduction over time using an HPS-specific and patient-centric tool, adding unique data for use of therapies in intestinal failure.

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Section: Methodsmentioning

confidence: 99%

Investigating the Relationship between Home Parenteral Support and Needs-Based Quality of Life in Patients with Chronic Intestinal Failure: A National Multi-Centre Longitudinal Cohort Study

et al. 2023

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“…35,56 In a large multicenter study in the UK of caregivers representing 339 patients with CIF, the family members' own health status and lack of health service support was more likely to be associated with moderate to severe caregiver burden. 57 Male sex is associated with a higher caregiver burden, 58 and family caregivers of patients with intestinal dysmotility compared with SBS experience more caregiver strain because of demands on their time. 59 Resources for patients and their family caregivers should be provided to facilitate coping with SBS and HPN dependency.…”

Section: Qolmentioning

confidence: 99%

“…Furthermore, family caregivers may neglect their own physical and mental health; have a high rate of reactive or situational depression, anxiety, and fear; and often express feelings of social isolation 35,56 . In a large multicenter study in the UK of caregivers representing 339 patients with CIF, the family members' own health status and lack of health service support was more likely to be associated with moderate to severe caregiver burden 57 . Male sex is associated with a higher caregiver burden, 58 and family caregivers of patients with intestinal dysmotility compared with SBS experience more caregiver strain because of demands on their time 59 .…”

Section: Qolmentioning

confidence: 99%

Epidemiology, survival, costs, and quality of life in adults with short bowel syndrome

Winkler

Tappenden

2023

Nut in Clin Prac

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Short bowel syndrome (SBS) is a rare disorder with known physical, psychosocial, and economic burdens and significant morbidity and mortality. Many individuals with SBS require long-term home parenteral nutrition (HPN). The incidence and prevalence of SBS is difficult to determine because it is often based on HPN usage and may not account for those who receive intravenous fluids or achieve enteral autonomy. The most common etiologies associated with SBS are Crohn's disease and mesenteric ischemia. Intestinal anatomy and remnant bowel length are prognostic for HPN dependency, and enteral autonomy confers a survival advantage. Health economic data confirm that PN-related costs are higher for hospitalizations than at home; yet significant healthcare resource utilization is necessary for successful HPN, and patients and families report substantial financial distress that impacts quality of life (QOL). An important advancement in QOL measurement is the validation of HPN-and SBS-specific QOL questionnaires. In addition to the known factors negatively impacting QOL, such as diarrhea, pain, nocturia, fatigue, depression, and narcotic dependency, research has shown that the volume and number of PN infusions per week is associated with QOL.Although traditional QOL measurements describe how underlying disease and therapy influence life, they do not assess how symptoms and functional limitations affect the QOL of patients and caregivers. Patient-centered measures and conversation focused on psychosocial issues helps patients with SBS and HPN dependency better cope with their disease and treatment. This article presents a brief overview of SBS, including epidemiology, survival, costs, and QOL.

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Quality of Life

Bond,

Lal

2023

Intestinal Failure

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Impact of home parenteral nutrition on family members: A national multi-centre cross-sectional study

Cited by 5 publications

References 35 publications

Investigating the Relationship between Home Parenteral Support and Needs-Based Quality of Life in Patients with Chronic Intestinal Failure: A National Multi-Centre Longitudinal Cohort Study

Investigating the Relationship between Home Parenteral Support and Needs-Based Quality of Life in Patients with Chronic Intestinal Failure: A National Multi-Centre Longitudinal Cohort Study

Epidemiology, survival, costs, and quality of life in adults with short bowel syndrome

Quality of Life

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