Health Care Costs at the End of Life for Patients with Idiopathic Pulmonary Fibrosis. Evaluation of a Pilot Multidisciplinary Collaborative Interstitial Lung Disease Clinic

Kalluri, Meena; Lu-Song, Jenny; Younus, Sarah; Nabipoor, Majid; Richman‐Eisenstat, Janice; Öhinmaa, Arto; Bakal, Jeffrey A.

doi:10.1513/annalsats.201909-707oc

Cited by 26 publications

(30 citation statements)

References 42 publications

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“…9 Preliminary evidence shows that an integrated palliative approach delivered using our MDC care model reduces end-oflife care costs in IPF. 37 The odds of dying at home in our study were increased by 13% following a single-unit increase in palliative care bundle score, suggesting the importance of early initiation of supplemental oxygen, opioids, ACP, and home care enrollment. Rather than waiting until the end of life, the palliative approach that our MDC-ILD clinic undertakes proactively provides the resources necessary so that patients and caregivers can confidently respond to changes in clinical status or dyspnea crises while remaining at home.…”

Section: Discussionmentioning

confidence: 54%

“…The components we chose to include in our bundle are supported by previous work. 31,[36][37][38][39] In addition, there is no consensus as to what constitutes "early" palliative care. In our current study, we defined it as being more than 1 month prior to death.…”

Section: Discussionmentioning

confidence: 99%

“…One hundred and six charts were reviewed and 92 patients were included in the study (Figure 1): 57 (62%) died at home (37) or in hospice (20), and 35 (38%) in hospital. home or hospice were approximately 5 years older than those who died in hospital, 1.4 times more likely to be male, and 1.7 times more likely to have IPF compared to other ILDs (72% vs 43%).…”

Section: Baseline Characteristicsmentioning

confidence: 99%

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Early Integrated Palliative Care Bundle Impacts Location of Death in Interstitial Lung Disease: A Pilot Retrospective Study

Archibald

Bakal

Richman‐Eisenstat

et al. 2020

Am J Hosp Palliat Care

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Background: Interstitial lung diseases (ILDs) comprise a heterogeneous group of fibrotic, progressive pulmonary diseases characterized by poor end-of-life care and hospital deaths. In 2012, we launched our Multidisciplinary Collaborative (MDC) ILD clinic to deliver integrated palliative approach throughout disease trajectory to improve care. We sought to explore the effects of palliative care and other factors on location of death (LOD) of patients with ILD. Methods: The MDC-ILD clinic implemented a palliative care bundle including advance care planning (ACP), opiates use, allied health home care engagement, and use of supplemental oxygen and early caregiver engagement in care. Data from patients with ILD who attended the clinic and died between 2012 and 2019 were used to generate scores representing the components and duration of palliative care (palliative care bundle score) and caregiver involvement (caregiver engagement score). We examined the impact of these scores on patients’ LOD. Results: A total of 92 MDC-ILD clinic patients were included, 57 (62%) had home or hospice deaths. Patients who died at home or hospice had higher palliative care bundle scores (10.0 ± 4.0 vs 7.8 ± 3.9, P = .01) and caregiver engagement scores (1.7 ± 0.6 vs 1.3 ± 0.7, P = .01) compared to those who died in hospital. Patients were 1.13 times more likely to die at home or hospice following a 1-point increase in palliative care bundle score (95% CI: 1.01-1.29, P = .04) and 2.38 times more likely following a 1-point increase in caregiver engagement score (95% CI: 1.17-5.15, P = .02). Conclusions: Home and hospice deaths are feasible in ILD. Early initiation of palliative care bundle components such as ACP discussions, symptom self-management, caregiver engagement, and close collaboration with allied health home care supports can promote adherence to patient preference for home or hospice deaths.

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Section: Discussionmentioning

confidence: 54%

Section: Discussionmentioning

confidence: 99%

Section: Baseline Characteristicsmentioning

confidence: 99%

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Early Integrated Palliative Care Bundle Impacts Location of Death in Interstitial Lung Disease: A Pilot Retrospective Study

Archibald

Bakal

Richman‐Eisenstat

et al. 2020

Am J Hosp Palliat Care

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“…The use of this approach within our Multidisciplinary Collaborative Care (MDC) clinic model has led to early detection and treatment of dyspnea, improved end of life care and reduced hospitalizations and costs. 4 -6,7…”

Section: Introductionmentioning

confidence: 99%

Buccal Hydromorphone Syrup for Managing Dyspnea in Idiopathic Pulmonary Fibrosis

Fong

Richman‐Eisenstat

Kalluri

2020

Am J Hosp Palliat Care

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Context: Dyspnea is a highly distressing symptom that characterizes idiopathic pulmonary fibrosis (IPF), a common idiopathic interstitial lung disease (ILD) with a high symptom burden, poor quality of life, and early mortality. Though opioids are mentioned in guidelines for dyspnea management, guidance on how and when to initiate opioids is lacking. Different pharmacologic strategies are needed to address different types of dyspnea (baseline, incident, and crisis). Due to a longer onset of action, the oral route (swallowed) may be less effective for prevention of incident dyspnea or for rapid relief of crisis dyspnea, prompting the use of alternative drug delivery strategies for self-management. We inadvertently discovered the efficacy of buccal administration of low dose, low volume hydromorphone oral syrup for dyspnea management in ILD, which has not been previously reported in the literature. Case Series: We describe our approach to dyspnea assessment and management in IPF, including use of the Multidimensional Dyspnea Scale (MDDS), a novel instrument yet to be validated that we developed to better identify and categorize dyspnea into the types experienced by a patient with IPF over the course of a day. We then describe how buccal hydromorphone oral syrup is initiated and titrated for dyspnea management in 3 patients at different points in their disease trajectory. Conclusion: Buccal hydromorphone oral syrup is effective for dyspnea management across the spectrum of IPF. When integrated into a patient-centered algorithm for symptom assessment and management, it allows for rapid and easy self-management of dyspnea by patients and their caregivers.

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“…Some subjects reported initial anxiety, but in retrospect, they agreed that it was beneficial to "know" and be prepared for the future (Pooler [19]). While confirmation in prospective studies is needed, it may be important for clinicians to know that short-term anxiety can occur but in the long term, such discussions may have tangible longer-term benefits such as decrease in ineffective and dangerous therapies, and reduced end of life hospitalizations [20]. This poses another problem when designing clinical trials for PC interventions, as the duration of the trial can have a great impact on the measured results and on their interpretation.…”

mentioning

confidence: 99%

Early referral to palliative care in IPF – pitfalls and opportunities in clinical trials

et al. 2020

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Letter to the editorTo the Editors, BMC Respiratory Research Dear Drs. Bals and Tantisira, We read with great interest the study by Janssen et al. to assess feasibility of measuring the effect of a palliative care (PC) clinic referral on quality of life, anxiety and depression in Idiopathic Pulmonary Fibrosis (IPF) [1]. We would like to congratulate the authors for undertaking research in the much-needed area of IPF palliative care.The study was a pilot study and as such not powered to detect impact of intervention. The authors succeeded in demonstrating that this type of study is feasible but the intervention (referral to PC clinic) did not show any impact on health related quality of life (HrQoL) as measured by St. George respiratory Questionnaire (SGRQ) total score, and anxiety and depression (HADS) at 6 months. At 3 months follow up, SGRQ symptoms score and depression showed transient worsening in the intervention group.In any clinical trial, the goals are to recruit the target population without significant bias, apply standardized interventions and use the best measurement tool to detect the effect of interventions. The authors highlight to several important poinst to consider in understanding the results. First, selection bias may have limited the enrolment into the study. Off 55 eligible patients, only 22 (40%) consented to participate. This is in sharp contrast to recent trials in IPF [2,3] where all eligible patients

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Health Care Costs at the End of Life for Patients with Idiopathic Pulmonary Fibrosis. Evaluation of a Pilot Multidisciplinary Collaborative Interstitial Lung Disease Clinic

Cited by 26 publications

References 42 publications

Early Integrated Palliative Care Bundle Impacts Location of Death in Interstitial Lung Disease: A Pilot Retrospective Study

Early Integrated Palliative Care Bundle Impacts Location of Death in Interstitial Lung Disease: A Pilot Retrospective Study

Buccal Hydromorphone Syrup for Managing Dyspnea in Idiopathic Pulmonary Fibrosis

Early referral to palliative care in IPF – pitfalls and opportunities in clinical trials

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