Decisions around Long-term Ventilation for Children. Perspectives of Directors of Pediatric Home Ventilation Programs

Edwards, Jeffrey D.; Morris, Marilyn C.; Nelson, Judith E.; Panitch, Howard B.; Miller, Rachel L.

doi:10.1513/annalsats.201612-1002oc

Cited by 35 publications

(90 citation statements)

References 17 publications

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“…Given that the impact of HMV extends beyond the child, families of children with chronic respiratory failure should be informed of the financial burden associated with caring for such a child, ideally early and as part of decision‐making around initiating HMV. Twelve out of 15 of interviewed directors of pediatric home ventilation programs highlight the financial impact of caring for a child with chronic respiratory failure to families in the course of shared decision‐making around initiating HMV . In addition, commentaries and studies of adult patients and providers have emphasized the importance (and infrequency) of discussing out‐of‐pocket expenses .…”

Section: Discussionmentioning

confidence: 99%

“…Twelve out of 15 of interviewed directors of pediatric home ventilation programs highlight the financial impact of caring for a child with chronic respiratory failure to families in the course of shared decision-making around initiating HMV. 22 In addition, commentaries and studies of adult patients and providers have emphasized the importance (and infrequency) of discussing out-of-pocket expenses. [23][24][25][26] Adult patients reported dissatisfaction with the lack of transparency around personal costs of managing their chronic illnesses and that insufficient provider knowledge about such costs and rushed impersonal discussions were impediments to discussing them.…”

Section: Discussionmentioning

confidence: 99%

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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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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

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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“…In the event of definitive weaning failure, the further prospect of long-term MV should be determined on an interdisciplinary basis, both in the best interest of the child and in close collaboration with the parents [727]. It is often the case that non-invasive home MV is sufficient for young children and infants [728].…”

Section: Infrastructure and Process Organisation For The Care Of Pmentioning

confidence: 99%

Prolonged Weaning: S2k Guideline Published by the German Respiratory Society

et al. 2020

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Mechanical ventilation (MV) is an essential part of modern intensive care medicine. MV is performed in patients with severe respiratory failure caused by respiratory muscle insufficiency and/or lung parenchymal disease; that is, when other treatments such as medication, oxygen administration, secretion management, continuous positive airway pressure (CPAP), or nasal high-flow therapy have failed. MV is required for maintaining gas exchange and allows more time to curatively treat the underlying cause of respiratory failure. In the majority of ventilated patients, liberation or “weaning” from MV is routine, without the occurrence of any major problems. However, approximately 20% of patients require ongoing MV, despite amelioration of the conditions that precipitated the need for it in the first place. Approximately 40–50% of the time spent on MV is required to liberate the patient from the ventilator, a process called “weaning”. In addition to acute respiratory failure, numerous factors can influence the duration and success rate of the weaning process; these include age, comorbidities, and conditions and complications acquired during the ICU stay. According to international consensus, “prolonged weaning” is defined as the weaning process in patients who have failed at least 3 weaning attempts, or require more than 7 days of weaning after the first spontaneous breathing trial (SBT). Given that prolonged weaning is a complex process, an interdisciplinary approach is essential for it to be successful. In specialised weaning centres, approximately 50% of patients with initial weaning failure can be liberated from MV after prolonged weaning. However, the heterogeneity of patients undergoing prolonged weaning precludes the direct comparison of individual centres. Patients with persistent weaning failure either die during the weaning process, or are discharged back to their home or to a long-term care facility with ongoing MV. Urged by the growing importance of prolonged weaning, this Sk2 Guideline was first published in 2014 as an initiative of the German Respiratory Society (DGP), in conjunction with other scientific societies involved in prolonged weaning. The emergence of new research, clinical study findings and registry data, as well as the accumulation of experience in daily practice, have made the revision of this guideline necessary. The following topics are dealt with in the present guideline: Definitions, epidemiology, weaning categories, underlying pathophysiology, prevention of prolonged weaning, treatment strategies in prolonged weaning, the weaning unit, discharge from hospital on MV, and recommendations for end-of-life decisions. Special emphasis was placed on the following themes: (1) A new classification of patient sub-groups in prolonged weaning. (2) Important aspects of pulmonary rehabilitation and neurorehabilitation in prolonged weaning. (3) Infrastructure and process organisation in the care of patients in prolonged weaning based on a continuous treatment concept. (4) Changes in therapeutic goals and communication with relatives. Aspects of paediatric weaning are addressed separately within individual chapters. The main aim of the revised guideline was to summarize both current evidence and expert-based knowledge on the topic of “prolonged weaning”, and to use this information as a foundation for formulating recommendations related to “prolonged weaning”, not only in acute medicine but also in the field of chronic intensive care medicine. The following professionals served as important addressees for this guideline: intensivists, pulmonary medicine specialists, anaesthesiologists, internists, cardiologists, surgeons, neurologists, paediatricians, geriatricians, palliative care clinicians, rehabilitation physicians, intensive/chronic care nurses, physiotherapists, respiratory therapists, speech therapists, medical service of health insurance, and associated ventilator manufacturers.

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“…Families of children with home mechanical ventilation report significant out‐of‐pocket costs, and it is common for one or more family members to take unpaid days, reduce paid work hours, or stop working entirely 7 . For the decision to initiate home mechanical ventilation to truly be a choice, families must also know they have the option to decline home mechanical ventilation and be educated regarding what this path entails for their child 8 …”

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confidence: 99%

The importance of advance care planning for children with chronic respiratory failure

Miles

Turnbull

Sterni

2020

Pediatric Pulmonology

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Decisions around Long-term Ventilation for Children. Perspectives of Directors of Pediatric Home Ventilation Programs

Abstract: As providers who follow children using LTV, directors of pediatric home ventilation programs have perspectives regarding the decisional needs of these families and how to meet them that can help inform and shape the practices of other providers who assist families facing this decision.

Cited by 35 publications

References 17 publications

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

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

Prolonged Weaning: S2k Guideline Published by the German Respiratory Society

The importance of advance care planning for children with chronic respiratory failure

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