Dataset Information

Home-Based Palliative Care: Perspectives of Chronic Obstructive Pulmonary Disease Patients and Their Caregivers.

ABSTRACT:

Background

Home-based palliative care (HBPC) is an important aspect of care for patients with moderate to advanced stages of chronic obstructive pulmonary disease (COPD) and their caregivers. HBPC provides symptom management, advanced care planning and goals of care conversations in the home, with the goal of maximizing quality of life and minimizing health care utilization. There is a gap in the knowledge of how the patients with COPD and their caregivers experience HBPC. The overall purpose of this study is to describe which aspects of HBPC were the most meaningful to patients with COPD, and their caregivers.

Methods

Through a descriptive design with narrative analysis methodology, we interviewed COPD patients and their caregivers to investigate their experience of HBPC received in the 30 days post hospitalization for a COPD exacerbation. A thematic analysis was conducted and the patient and caregiver interviews were analyzed in dyad using thematic analysis.

Results

A total of 10 dyads were interviewed. Patients and their caregivers perceived 3 times as many facilitators as barriers of receiving home-based palliative care in the 30 days post hospitalization for a COPD exacerbation. The outcomes of this study provide information that describes the aspects of HBPC that patients and their caregivers found most meaningful.

Conclusion

An understanding of the most meaningful aspects of HBPC from the perspectives of the patients with COPD and their caregivers can be used to inform the development of the best model for HBPC for this patient population.

SUBMITTER: Hyden KF

PROVIDER: S-EPMC7883912 | biostudies-literature | 2020 Oct

REPOSITORIES: biostudies-literature

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Publications

Home-Based Palliative Care: Perspectives of Chronic Obstructive Pulmonary Disease Patients and Their Caregivers.

Hyden Karen F KF Coats Heather L HL Meek Paula M PM

Chronic obstructive pulmonary diseases (Miami, Fla.) 20201001 4

<h4>Background</h4>Home-based palliative care (HBPC) is an important aspect of care for patients with moderate to advanced stages of chronic obstructive pulmonary disease (COPD) and their caregivers. HBPC provides symptom management, advanced care planning and goals of care conversations in the home, with the goal of maximizing quality of life and minimizing health care utilization. There is a gap in the knowledge of how the patients with COPD and their caregivers experience HBPC. The overall pu ...[more]

PMID: 32989940

Similar Datasets

Project description:Rationale: Little direction exists on how to integrate early palliative care in chronic obstructive pulmonary disease (COPD).Objectives: We sought to identify patient and family caregiver early palliative care needs across stages of COPD severity.Methods: As part of the Medical Research Council Framework developmental phase for intervention development, we conducted a formative evaluation of patients with moderate to very severe COPD (forced expiratory volume in 1 s [FEV1]/FVC < 70% and FEV1 < 80%-predicted) and their family caregivers. Validated surveys on quality of life, anxiety and depressive symptoms, and social isolation quantified symptom severity. Semi-structured interviews were analyzed for major themes on early palliative care and needs in patients and family caregivers and across COPD severity stages.Results: Patients (n = 10) were a mean (±SD) age of 60.4 (±7.5) years, 50% African American, and 70% male, with 30% having moderate COPD, 30% severe COPD, and 40% very severe COPD. Family caregivers (n = 10) were a mean age of 58.3 (±8.7) years, 40% African American, and 10% male. Overall, 30% (n = 6) of participants had poor quality of life, 45% (n = 9) had moderate-severe anxiety symptoms, 25% (n = 5) had moderate-severe depressive symptoms, and 40% (n = 8) reported social isolation. Only 30% had heard of palliative care, and most participants had misconceptions that palliative care was end-of-life care. All participants responded positively to a standardized description of early palliative care and were receptive to its integration as early as moderate stage. Five broad themes of early palliative care needs emerged: 1) coping with COPD; 2) emotional symptoms; 3) respiratory symptoms; 4) illness understanding; and 5) prognostic awareness. Coping with COPD and emotional symptoms were commonly shared early palliative care needs. Patients with very severe COPD and their family caregivers prioritized illness understanding and prognostic awareness compared with those with moderate-severe COPD.Conclusions: Patients with moderate to very severe COPD and their family caregivers found early palliative care acceptable and felt it should be integrated before end-stage. Of the five broad themes of early palliative care needs, coping with COPD and emotional symptoms were the highest priority, followed by respiratory symptoms, illness understanding, and prognostic awareness.

Project description:RATIONALE:Physical inactivity among patients with chronic obstructive pulmonary disease is associated with exacerbations requiring high-cost health care utilization including urgent, emergent, and hospital care. OBJECTIVES:To examine the effectiveness of a behavioral lifestyle physical activity intervention combined with chronic obstructive pulmonary disease self-management education to prevent high-cost health care utilization. METHODS:This was an analysis of secondary outcomes of the Chronic Obstructive Pulmonary Disease Self-Management Activation Research Trial, a two-arm randomized trial of stable adult outpatients with chronic obstructive pulmonary disease recruited from primary care and pulmonary clinics. Following a 6-week self-management education run-in period, participants were randomized to usual care or to a telephone-delivered home-based health coaching intervention over 20 weeks. Secondary outcomes of physical activity and health care utilization were determined by self-report 6, 12, and 18 months after randomization. Associations between treatment allocation arm and these secondary outcomes were examined using log-binomial and Poisson regression models. RESULTS:A total of 325 outpatients with stable chronic obstructive pulmonary disease were enrolled in the trial. Their average age was 70.3 years (standard deviation, 9.5), and 50.5% were female; 156 were randomized to usual care and 149 to the intervention. A greater proportion of participants reported being persistently active over the 18-month follow-up period in the intervention group (73.6%) compared with the usual care group (57.8%) (mean difference, 15.8%; 95% confidence interval, 4.0-27.7%). This association varied by severity of forced expiratory volume in 1 second impairment (P for interaction?=?0.09). Those in the intervention group with moderate impairment (forced expiratory volume in 1 second, 50-70% predicted), more frequently reported being persistently active compared with the usual care (86.0 vs. 65.1%; mean difference, 20.9%; 95% confidence interval, 5.7-36.1%). Patients with severe and very severe forced expiratory volume in 1 second impairment (forced expiratory volume in 1 second?<?50% predicted) in the intervention group also reported being persistently active more frequently compared with usual care (63.3 vs. 50.8%; mean difference, 12.6%; 95% confidence interval, -4.7 to 29.8). The intervention was associated with a lower rate of lung-related utilization (adjusted rate ratio, 0.38; 95% confidence interval, 0.23-0.63) only among participants with severe spirometric impairment. CONCLUSIONS:Our results demonstrate that a feasible and generalizable home-based coaching intervention may decrease sedentary behavior and increase physical activity levels. In those with severe chronic obstructive pulmonary disease, this intervention may reduce lung disease-related health care utilization. Clinical trial registered with www.clinicaltrials.gov (NCT01108991).

Project description:Purpose:Pulmonary rehabilitation (PR) is a well-established treatment for chronic obstructive pulmonary disease (COPD). The standard protocol for PR requires frequent hospital visits, which can be difficult for patients. We performed this study to assess whether unsupervised home-based PR (HBPR) is effective for patients with COPD. Patients and Methods:After assessing the outcome data, including the results of a COPD assessment test (CAT); the body mass index, airflow obstruction, dyspnea, and exercise capacity (BODE) index; a spirometry; the modified Medical Research Council (mMRC) dyspnea scale; and the 6-min walking test (6MWT), specialists imparted 1-hour education to patients regarding unsupervised HBPR at the baseline visit. This included methods for breathing, inhaler use, stretching, and exercise. On reviewing diaries after 8 weeks from the first visit, patients who exercised at least thrice per week were classified as the compliant group and the others were categorized as the noncompliant group. Changes in the outcomes were compared between the compliant and noncompliant groups. Results:A total of 41 patients were enrolled in this study; for 8 weeks of unsupervised HBPR, there were significant improvements in CAT scores (-4.62±4.61 vs 2.40±6.73; P=0.002), BODE index (-1.00±1.06 vs -0.20±0.56; P=0.01), and forced expiratory volume in 1 s (0.05±0.19 vs -0.09±0.16; P=0.02) among patients in the compliant group, compared with the noncompliant group. Moreover, their CAT (16.46±7.80 vs 11.85±7.23; P=0.03) and mMRC scores (2.54±0.76 vs 1.81±0.63; P=0.001) improved significantly after 8 weeks, compared with those at baseline. On the other hand, patients in the noncompliant group showed no significant improvement in any of the outcomes. Conclusion:In this study, compliant patients with unsupervised HBPR achieved favorable outcomes in 8 weeks. Thus, we recommend unsupervised HBPR for patients with COPD, even when regular hospital visits for PR are not possible. Trial Registration:NCT03754881.

Project description:BackgroundAlthough guidelines recommend palliative care for patients with chronic obstructive pulmonary disease, there is little evidence for the effectiveness of palliative care interventions for this patient group specifically.AimTo describe the characteristics of palliative care interventions for patients with COPD and their informal caregivers and review the available evidence on effectiveness and implementation outcomes.DesignSystematic review and narrative synthesis (PROSPERO CRD42017079962).Data sourcesSeven databases were searched for articles reporting on multi-component palliative care interventions for study populations containing ⩾30% patients with COPD. Quantitative as well as qualitative and mixed-method studies were included. Intervention characteristics, effect outcomes, implementation outcomes and barriers and facilitators for successful implementation were extracted and synthesized qualitatively.ResultsThirty-one articles reporting on twenty unique interventions were included. Only four interventions (20%) were evaluated in an adequately powered controlled trial. Most interventions comprised of longitudinal palliative care, including care coordination and comprehensive needs assessments. Results on effectiveness were mixed and inconclusive. The feasibility level varied and was context-dependent. Acceptability of the interventions was high; having someone to call for support and education about breathlessness were most valued characteristics. Most frequently named barriers were uncertainty about the timing of referral due to the unpredictable disease trajectory (referrers), time availability (providers) and accessibility (patients).ConclusionLittle high-quality evidence is yet available on the effectiveness and implementation of palliative care interventions for patients with COPD. There is a need for well-conducted effectiveness studies and adequate process evaluations using standardized methodologies to create higher-level evidence and inform successful implementation.

Dataset Information

Home-Based Palliative Care: Perspectives of Chronic Obstructive Pulmonary Disease Patients and Their Caregivers.

Background

Methods

Results

Conclusion

Publications

Home-Based Palliative Care: Perspectives of Chronic Obstructive Pulmonary Disease Patients and Their Caregivers.

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