The quality of life of home-ventilated children and their primary caregivers plus the associated social and economic burdens: a prospective study

Seear, Michael; Kapur, Akshat; Wensley, David; Morrison, Kelly; Behroozi, Ariana

doi:10.1136/archdischild-2015-309796

Cited by 51 publications

(102 citation statements)

References 31 publications

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“…However, this may not be so if the support required to deliver breath itself causes discomfort or pain. In most cases, children on LTV, both via tracheostomy and mask interfaces, report the burden of care as mild or moderate 19. While adult qualitative studies suggest acceptance among patients in whom LTV offers symptomatic relief or is essential for survival,20 some patients with neuromuscular disease have expressed hopelessness, related to their diagnosis rather than to the burden of LTV 21…”

Section: Patient and Family Considerationsmentioning

confidence: 99%

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Towards developing an ethical framework for decision making in long-term ventilation in children

et al. 2018

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The use of long-term ventilation (LTV) in children is growing in the UK and worldwide. This reflects the improvement in technology to provide LTV, the growing number of indications in which it can be successfully delivered and the acceptability of LTV to families and children. In this article, we discuss the various considerations to be made when deciding to initiate or continue LTV, describe the process that be followed, as decided by a consensus of experienced physicians, and outline the options available for resolution of conflict around LTV decision making. We recognise the uncertainty and hope provided by novel and evolving therapies for potential disease modification. This raises the question of whether LTV should be offered to allow time for a therapy to be trialled, or whether the therapy is unlikely to be effective, LTV would simply prolong suffering. We put this consensus view forward as an ethical framework for decision making in children requiring LTV.

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Section: Patient and Family Considerationsmentioning

confidence: 99%

“…Adult patients who had negative views of LTV accepted it once they realised the consequence of refusal 20. It is also important to remember physicians4 21 22 and even caregivers19 tend to underestimate quality of life scores in patients on LTV.…”

Section: Patient and Family Considerationsmentioning

confidence: 99%

Towards developing an ethical framework for decision making in long-term ventilation in children

et al. 2018

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“…Authors of numerous qualitative studies of families with children using HMV have commented on the out‐of‐pocket expenses and financial burdens associated with the child's domiciliary care . Two studies—one from the U.S. 25 years ago and one recently from Canada—have attempted to quantify these expenses. However, no researchers have studied these expenses and their impact in a recent sample of U.S. families.…”

Section: Introductionmentioning

confidence: 99%

Survey of financial burden of families in the U.S. with children using home mechanical ventilation

Edwards

Panitch

Constantinescu

et al. 2017

Pediatric Pulmonology

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Aim: To describe and quantify the out-of-pocket expenses, employment loss, and other financial impact related to caring for a child using home mechanical ventilation (HMV).Method: We conducted a cross-sectional survey of U.S. families with children who used HMV. Eligible participants were invited to complete a questionnaire addressing household and child characteristics, out-of-pocket expenses, employment loss/ reduction, and financial stress. Participants were recruited with the help of three national patient registries.Results: Two hundred twenty-six participants from 32 states (152 with children who used invasive ventilation and 74 with children who used noninvasive ventilation) completed the questionnaire. Participants' median reported yearly household income was $90 000 (IQR 70 000-150 000). The median amount paid in out-of-pocket expenses in the previous 3 months to care for their child using HMV totaled $3899 (IQR $2900-4550). Reported levels of financial stress decreased as income increased; 37-60% of participants, depending on income quintile, reported moderate financial stress with "some" of that stress due to their out-of-pocket expenses. A substantial majority reported one or more household members stopped or reduced work and took unpaid weeks off of work to care for their child. Conclusion:The financial impact of caring for a child using HMV is considerable for some families. Providers need to understand these financial burdens and should inform families of them to help families anticipate and plan for them. Therefore, we conducted a cross-sectional survey of U.S. families with children who use HMV in order to better understand their out-ofpocket expenses and employment loss related to their children's care and the financial stress related to those expenses and losses. These data can be used to provide better anticipatory guidance to families and to inform a full societal perspective cost-of-illness analysis. | MATERIALS AND METHODS | Participants and recruitmentEligible participants were parents or primary caregivers of a child who used HMV and who were residents of the U.S. Their child had to be less | QuestionnaireA questionnaire was developed based on what has been included in previous studies of direct non-medical and indirect costs of caring for children with chronic conditions 5,[8][9][10][11][12] and what is known about caring for children using HMV at home. Closed-ended questions addressed the following areas:1) The demographic characteristics of the participants and their households, including the household's gross annual income and other caregivers of the child (paid and unpaid).2) The children's characteristics, including age, underlying condition, modality and frequency of use of HMV, and insurance coverage.We also asked participants about home medical equipment for the child and if it was paid for out-of-pocket.3) Out-of-pocket expenses for medical supplies, medications, nutrition, professional home care, rehabilitation/complementary services, and other items related to the ch...

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“…One weakness of this methodology was that it did not capture any element of the child and family experience. It is well recognised that long‐term ventilation is a stressful experience for both . The survey also did not record the resources used by the responder to check information or whether the answer was discussed with other team members.…”

Section: Discussionmentioning

confidence: 99%

How do neonatal units within the Australian and New Zealand Neonatal Network manage ex‐preterm infants with severe chronic lung disease still requiring major respiratory support at term?

Battin

McKinlay

2018

J Paediatrics Child Health

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Aim The aim was to survey the Australian and New Zealand Neonatal Network (ANZNN) member units regarding current services and management guidelines for the ex‐premature infant with severe chronic lung disease (CLD) still requiring significant respiratory support at term. Methods A 16‐question survey was sent to clinical directors of all Level 3 units in Australia and New Zealand via the network. Reminder emails were sent, as required, to prompt a satisfactory response rate. Results Survey responses were received from 26 of the 29 (90%) ANZNN Level 3 units. At 37 weeks' corrected gestation, over 90% of the units provide ongoing respiratory support in the neonatal intensive care unit (NICU). However, by 50 weeks, ongoing care is provided in several settings, including NICU, high dependency unit (HDU)/paediatric intensive care unit or respiratory wards. The majority (76%) of units arrange transfer on an ad hoc basis, but six units (24%) have set criteria for transfer based on gestation, workload and respiratory requirement. Three units declared a maximum age in NICU (44, 46 or 48 weeks). A variety of approaches were used to identify infants who were likely to require transfer, and 78% of units had a staff member assigned to assist transition. Three units stated that they had a home ventilation programme suitable for these infants. No unit supplied a guideline on tracheostomy or specific respiratory management post‐term. Conclusion Despite a significant number of babies requiring ongoing support for severe CLD, the location of the service appears very variable, and there is a lack of specific written guidelines.

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The quality of life of home-ventilated children and their primary caregivers plus the associated social and economic burdens: a prospective study

Abstract: NCT01863992.

Cited by 51 publications

References 31 publications

Towards developing an ethical framework for decision making in long-term ventilation in children

Towards developing an ethical framework for decision making in long-term ventilation in children

Survey of financial burden of families in the U.S. with children using home mechanical ventilation

How do neonatal units within the Australian and New Zealand Neonatal Network manage ex‐preterm infants with severe chronic lung disease still requiring major respiratory support at term?

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