Palliative Care for Patients with Nonmalignant Respiratory Disease.
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ABSTRACT:
SUBMITTER: Gupta N
PROVIDER: S-EPMC5545966 | biostudies-other | 2017 Jul-Sep
REPOSITORIES: biostudies-other
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Project description:Ghana's chronic disease burden is on the rise. An essential aspect of clinical care in chronic disease management is to improve the quality of life of both patients and their families and to help them cope with the experience of life-limiting illness. Specialist palliative care services help reach this objective, especially in the context of complex psychosocial challenges and high symptom burden. It is, therefore, necessary that as many patients as possible get access to available specialist palliative care services. This paper explores the factors influencing referral of patients with nonmalignant chronic diseases for specialist palliative care. A qualitative approach was used to explore these factors from eight (8) participants-four (4) physician specialists and four (4) next of kin of patients with advanced nonmalignant chronic illness. Individual face-to-face interviews were conducted using a semistructured interview guide. Interviews were audio-recorded and data coded, themes and subthemes were identified, and thematic analysis was done. Barriers and motivators identified were categorized as either related to physicians, institution, or family. Barriers to referral were perception of the scope of palliative care, medical paternalism, lack of an institutional referral policy, poor human resource capacity of the palliative care team, and lack of awareness about the existence of specialist palliative care service. Poor economic status of the patient and family, poor prognosis, previous interaction with the palliative care team, and an appreciation of patients' expectations of the healthcare system were identified as motivators for referral. The palliative care team must therefore increase awareness among other health professionals about their services and facilitate the development and availability of a clear policy to guide and improve referrals.
| S-EPMC7102405 | biostudies-literature
Project description:BackgroundTo evaluate trends of nonmalignant respiratory disease (NMRD) mortality among US underground uranium miners on the Colorado Plateau, and to estimate the exposure-response association between cumulative radon progeny exposure and NMRD subtype mortality.MethodsStandardized mortality ratios (SMRs) and excess relative rates per 100 working level months (excess relative rate [ERR]/100 WLM) were estimated in a cohort of 4021 male underground uranium miners who were followed from 1960 through 2016.ResultsWe observed elevated SMRs for all NMRD subtypes. Silicosis had the largest SMR (n = 52, SMR = 41.4; 95% confidence interval [CI]: 30.9, 54.3), followed by other pneumoconiosis (n = 49, SMR = 39.6; 95% CI: 29.6, 52.3) and idiopathic pulmonary fibrosis (IPF) (n = 64, SMR = 4.77; 95% CI 3.67, 6.09). SMRs for silicosis increased with duration of employment; SMRs for IPF increased with duration of employment and calendar period. There was a positive association between cumulative radon exposure and silicosis with evidence of modification by smoking (ERR/100 WLM≥10 pack-years = 0.78; 95% CI: 0.05, 24.6 and ERR/100 WLM<10 pack-years = 0.01; 95% CI: -0.03, 0.52), as well as a small positive association between radon and IPF (ERR/100 WLM = 0.06, 95% CI: 0.00, 0.24); these associations were driven by workers with prior employment in hard rock mining.ConclusionsUranium mining workers had excess NMRD mortality compared with the general population; this excess persisted throughout follow-up. Exposure-response analyses indicated a positive association between radon exposure and IPF and silicosis, but these analyses have limitations due to outcome misclassification and missing information on occupational co-exposures such as silica dust.
| S-EPMC10031748 | biostudies-literature
Project description:ImportanceUse of palliative care (PC) for patients with cardiovascular disease (CVD) has increased recently. However, it is unknown if patients are receiving earlier referrals to PC.ObjectiveTo assess characteristics and trends of patients with CVD referred to PC.Design, setting, and participantsCohort study in which analysis of data from the multicenter Quality Data Collection Tool for Palliative Care registry from January 2, 2015, through December 29, 2017, included patients with CVD 18 years or older referred to initial PC consultation who had a documented palliative performance score (PPS) .ExposuresPatients with CVD who presented for an initial PC visit.Main outcomes and measuresThe primary outcome was PPS. Secondary outcomes included symptoms and end-of-life documentation.ResultsAmong 1801 patients (mean [SD] age, 77.7 [13.7] years) from 16 sites in the analysis, 875 (48.6%) were women and 1339 (74.3%) were white. A low PPS score (0%-30%), consistent with bedbound status, was recorded for 521 patients (28.9%), with no change through time. The most common moderate to severe symptoms were poor well-being, tiredness, anorexia, and dyspnea. Year of encounter was associated with improved symptoms of pain (odds ratio, 1.25; 95% CI, 1.05-1.50) and with constipation (odds ratio, 1.32; 95% CI, 1.03-1.69). No change through time was noted in other symptoms or end-of-life documentation. Although the proportion of referrals from general medicine increased from 43.2% (167 of 387) in 2015 to 52.9% (410 of 775) in 2017, the proportion of referrals from cardiologists decreased from 16.5% (64 of 387) in 2015 to 10.5% (81 of 775) in 2017. The proportion of patients referred to PC who were black decreased from 11.9% (46 of 387) in 2015 to 6.3% (49 of 775) in 2017. While 69.5% of all patients with CVD (1252 of 1801) had a primary diagnosis of heart failure, the proportion of non-heart failure CVD diagnoses, such as coronary artery disease and valvular heart disease, increased from 25.6% (99 of 387) in 2015 to 30.1% (233 of 775) in 2017.Conclusions and relevancePatients with CVD demonstrated significant symptom burden, and there was no evidence in the registry of change in the PPSs of patients with CVD referred to PC through time. Cardiologists provided comparatively fewer referrals to PC for patients with CVD, and this proportion decreased through time. The proportion of racial and ethnic minorities referred to PC was small and decreased through time. These findings reinforce the need for cardiologists to be more engaged with PC and consider referring appropriate patients with CVD sooner.
| S-EPMC6503632 | biostudies-literature
Project description:Objectives:Palliative care addresses the suffering of patients and families affected by progressive illness through the management of medical symptoms, psychosocial issues, and spiritual concerns. Although there is an emerging interest in applying palliative care to Parkinson's disease (PD), potential palliative care needs have not been systematically investigated in PD patients. Our primary objective was to determine the prevalence of clinically significant symptomatic, psychosocial, and spiritual issues in PD and understand their impact on health-related quality of life (HRQOL). Secondary objectives included comparing the level of palliative care needs of PD patients to advanced cancer patients and assessing preferences for advance care planning. Methods:Ninety PD patients and 47 patients with advanced cancer were surveyed regarding potential palliative care needs, including symptom burden, mood, anticipatory grief, and spiritual well-being. PD patients completed additional scales regarding HRQOL, motor symptoms, cognitive impairment, and preferences regarding advance care planning. Results:Potential palliative care needs, including high symptom burden and grief, were common in PD patients and contributed to HRQOL even when controlling for depression and motor severity. In all domains investigated, PD patients had similar or higher levels of palliative care needs as patients with advanced cancer. PD patients expressed a desire to complete advance directives early in the disease course and with a physician. Conclusions:Palliative care needs contribute to HRQOL in PD and are of similar severity as cancer patients. This study supports and helps focus efforts to integrate palliative care principles in PD care across the spectrum of the disease.
| S-EPMC6384178 | biostudies-literature
Project description:BackgroundThe Advanced Lung Disease Service is a unique, new model of integrated respiratory and palliative care, which aims to address the unmet needs of patients with advanced, non-malignant, respiratory diseases. This study aimed to explore patients' and carers' experiences of integrated palliative care and identify valued aspects of care.MethodsAll current patients of the integrated service and their carers were invited to complete a confidential questionnaire by post or with an independent researcher.ResultsEighty-eight responses were received from 64 (80.0%) eligible patients and from 24 (60%) eligible carers. Most participants (84, 95.5%) believed the integrated service helped them to manage breathlessness and nearly all participants (87, 98.9%) reported increased confidence managing symptoms. One third of patients (34.4%) had received a nurse-led domiciliary visit, with nearly all regarding this as helpful. Most participants believed the integrated respiratory and palliative care team listened to them carefully (87, 98.9%) with opportunities to express their views (88, 100%). Highly valued aspects of the service were continuity of care (82, 93.2%) and long-term care (77, 87.5%). Three quarters of participants (66, 75.0%) rated their care as excellent, with 20.5% rating it as very good. Nearly all (87, 98.9%) participants reported that they would recommend the service to others.ConclusionsPatients and carers expressed high levels of satisfaction with this model of integrated respiratory and palliative care. Continuity of care, high quality communication and feeling cared for were greatly valued and highlight simple but important aspects of care for all patients.
| S-EPMC6339689 | biostudies-literature
Project description:BackgroundInternationally, non-malignant respiratory disease is on the increase. However, although palliative care is recommended as an appropriate healthcare option for this client group, evidence suggests that these patients and their carers do not receive the same standards of palliative care as patients with a malignant lung condition.AimThe aim of this review was to provide a critical overview of the current evidence base in relation to the palliative service provision for people with non-malignant respiratory disease and their carers.MethodsA review of the literature was conducted in July 2015 and updated in October 2017 and focused on the palliative care service provision for patients with interstitial lung disease, chronic obstructive pulmonary disease and bronchiectasis.ResultsIn total, 71 empirical studies were included in the review and grouped into two main themes: patient and carer's bio-psychosocial symptom needs and management, and palliative care service provision for patients with non-malignant respiratory disease and their carers.ConclusionThe majority of palliative research focuses on patients with a diagnosis of chronic obstructive pulmonary disease. A deeper insight is required into the palliative service provision experienced by those with other forms of non-malignant respiratory disease such as bronchiectasis and interstitial lung disease.
| S-EPMC7932269 | biostudies-literature
Project description:BackgroundHome-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.MethodsThrough 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.ResultsA 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.ConclusionAn 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.
| S-EPMC7883912 | biostudies-literature
Project description:BackgroundInterstitial lung disease (ILD) results in profound symptom burden and carries high mortality. Palliative care (PC) is dedicated to improving quality of life in patients with serious illness. Early PC provision improves rates of advance care planning and symptom management in patients with ILD.Research questionWhat are the current perspectives on PC among ILD providers, and what are the barriers to PC in ILD specialty centers?Study design and methodsA 24-question electronic survey was disseminated to providers at the 68 Pulmonary Fibrosis Foundation Care Centers across the United States from October 2020 to December 2020.ResultsThe survey was completed by 128 participants representing all 68 Pulmonary Fibrosis Foundation Care Center Network sites. Most respondents were physicians. Most providers exhibit good knowledge of, feel comfortable assessing a patient's readiness for, and agree with the need for PC for patients with ILD. Providers are most likely to refer to PC at objective disease and/or symptomatic progression rather than at initial diagnosis. In comparison with providers who report referring their patients to PC, providers who report rare referral are more likely to cite lack local PC availability (P < .01) and less likely to feel comfortable discussing prognosis/disease trajectory (P = .03) or feel it is important to address advance directives in ILD clinic (P = .02). There is a lack of standardized measures used to assess specific symptoms, overall symptom burden, or health-related quality of life across institutions. Discordance exists between self-reported and actual access to local inpatient and outpatient PC services.InterpretationMost ILD providers use PC and are comfortable discussing PC. Barriers to PC identified in this survey include the following: perceived lack of local access to PC, lack of systematic tools to assess symptom burden, lack of established optimal timing of PC referral, and unclear need for specialized PC delivery.
| S-EPMC9633804 | biostudies-literature
Project description:BackgroundPrevious research and key guidelines have suggested potential models of palliative care for patients with COPD and interstitial lung disease. However, these recommendations are often not effectively implemented in clinical practice and are void of guidance regarding palliative care for patients with bronchiectasis, another form of non-malignant respiratory disease. The aim of this research was to explore generalist and specialist palliative care service provision for people with non-malignant respiratory disease in the North and Republic of Ireland.MethodsQualitative study involving a convenience sample of 17 bereaved carers and 18 healthcare professionals recruited from 2 rural and 2 urban sites on the Island of Ireland. Data collection consisted of semi-structured interviews with carers of patients with COPD, interstitial lung disease or bronchiectasis who had died 3-18 months previously; and 4 focus groups with healthcare professionals. Data analysed using thematic analysis.ResultsFindings highlighted the lack of a clear model of holistic care delivery for patients with non-malignant respiratory disease and illuminated the varying levels of palliative care provision this client group experienced. Additionally, ambiguity amongst healthcare professionals regarding prognostication illuminated the importance of the provision of palliative care being based on patient need, not prognosis. This research developed a potential model of palliative care which may help healthcare professionals introduce palliative care, and specialist respiratory care, early in the disease trajectory of non-malignant respiratory disease, whilst also encouraging the involvement of specialist palliative care for complex symptom management.ConclusionThis research provides an important insight into a potential model of palliative care for people with non-malignant respiratory disease, inclusive of bronchiectasis. However, the feasibility of integrating this model into clinical practice requires further exploration.
| S-EPMC5504568 | biostudies-literature
Project description:BACKGROUND & AIMS:There has been increased attention on ways to improve the quality of end-of-life care for patients with end-stage liver disease; however, there have been few reports of care experiences for patients during terminal hospitalizations. We analyzed data from a large national database to increase our understanding of palliative care for and health care utilization by patients with end-stage liver disease. METHODS:We performed a cross-sectional, observational study to examine terminal hospitalizations of adults with decompensated cirrhosis using data from the National Inpatient Sample from 2009 through 2013. We collected data on palliative care consultation and total hospital costs, and performed multivariate regression analyses to identify factors associated with palliative care consultation. We also investigated whether consultation was associated with lower costs. RESULTS:Among hospitalized adults with terminal decompensated cirrhosis, 30.3% received palliative care; the mean cost per hospitalization was $48,551 ± $1142. Palliative care consultation increased annually, and was provided to 18.0% of patients in 2009 and to 36.6% of patients in 2013 (P < .05). The mean cost for the terminal hospitalization did not increase significantly ($47,969 in 2009 to $48,956 in 2013, P = .77). African Americans, Hispanics, Asians, and liver transplant candidates were less likely to receive palliative care, whereas care in large urban teaching hospitals was associated with a higher odds of receiving consultation. Palliative care was associated with lower procedure burden-after adjusting for other factors, palliative care was associated with a cost reduction of $10,062. CONCLUSIONS:Palliative care consultation for patients with end-stage liver disease increased from 2009 through 2013. Palliative care consultation during terminal hospitalizations is associated with lower costs and procedure burden. Future research should evaluate timing and effects of palliative care on quality of end-of-life care in this population.
| S-EPMC5544588 | biostudies-literature