MJHS Institute for Innovation in Palliative Care

New York City, NY, United States

MJHS Institute for Innovation in Palliative Care

New York City, NY, United States
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Riggs A.,MJHS Institute for Innovation in Palliative Care | Breuer B.,Yeshiva University | Dhingra L.,Yeshiva University | Chen J.,MJHS Institute for Innovation in Palliative Care | And 2 more authors.
Journal of Pain and Symptom Management | Year: 2017

Context: In the U.S., palliative care programs improve access to hospice through enhanced communication and efficiencies in hospice eligibility review and enrollment. For community-based programs, this task may begin with telephone contact. Objectives: To evaluate the incidence and predictors of hospice enrollment following telephonic outreach by a nurse after referral to a community-based, specialist palliative care program. Methods: During 2012-2014, 299 consecutive patients who were referred to a palliative care program and subsequently enrolled in hospice provided electronic health record data for a retrospective cohort study. Those who elected hospice after telephonic outreach and before the first palliative care home visit, were compared with those who enrolled in hospice after palliative care visits began, using both bivariate and multivariate analyses. Results: Mean (SD) age was 74.1 (18.7) years; 60.2% were women, 44.4% were White, 22.5% were Hispanic, 20.9% were Black, and 9.6% were Asian. In total, 177 patients (59.2%) elected hospice following telephonic outreach and 122 (40.8%) enrolled after home visits began. The former group received a mean of 4.5 calls (median = 3.0) before hospice election. In multivariate analysis, hospice enrollment following telephonic outreach alone was associated with hospital or nursing home referral, not married status, and poor performance status (all P < 0.05). Conclusion: More than half of patients electing hospice after referral to a palliative care program did so following telephonic outreach alone. Both sociodemographic and clinical characteristics predicted this outcome. Palliative care programs can improve hospice access through initial telephonic outreach by trained professionals. © 2017 American Academy of Hospice and Palliative Medicine.


Currow D.C.,Flinders University | Abernethy A.P.,Flinders University | Abernethy A.P.,Duke University | Fallon M.,University of Edinburgh | Portenoy R.K.,MJHS Institute for Innovation in Palliative Care
Journal of Pain and Symptom Management | Year: 2017

The World Health Organization essential medications list for hospice/palliative care reflects that, with the judicious use of currently available medications, the majority of symptoms can be lessened, and some controlled completely. Even with optimal use of current medications, symptom control is still unacceptable for many people. Currently available medications offer great benefit to a minority of patients, some benefit to an additional group, and no benefit or harms to others. In symptom control, development of new drugs is advancing at a glacial pace, contrasting to the rapid advances seen in many other disciplines. Specialists in palliative care should agree on several principles consequently: 1) Access to symptom-control drugs codified in the World Health Organization Essential Medicines list deserves the strongest support from national policies and professional guidelines, especially in resource-challenged countries. 2) The optimal use of currently available symptom-control drugs cannot yield acceptably high rates of net benefits. 3) There is a compelling need to identify patient subgroups that are likely to benefit from available medications and provide rigorous empirical support for indications, dosing, and route of administration for clinical practice. 4) New therapies are needed requiring an accelerated effort to investigate further the pathophysiology, neurobiology, and pharmacogenetics of distressing symptoms, and factors contributing to variations in drug response. This development requires a lengthy lead time. 5) Smarter ways to promote new knowledge into practice are needed as no drug will be suitable for all patients. We need to improve clinical characterization and biomarker technology to bring the best drugs to the right patients every time. © 2017 American Academy of Hospice and Palliative Medicine.


Breuer B.,MJHS Institute for Innovation in Palliative Care | Chang V.T.,Virginia New Jersey Health Care System | Von Roenn J.H.,Northwestern University | Von Gunten C.,Hospice and Palliative Care | And 6 more authors.
Oncologist | Year: 2015

Background. Cancer pain is usually managed by oncologists, occasionallywith input fromspecialists in hospice and palliative medicine (PLM) or pain medicine (PMD). We evaluated the knowledge of cancer painmanagement in these three specialty groups. Methods. Eight vignettes depicting challenging scenarios of patients with poorly controlled pain were developed; each had five or six treatment choices. Respondents indicated choices likely tobesafeandefficacious as“true”andchoices likely tobe unsafe or inefficacious as “false.” Two questionnaires were created, each with four vignettes. Three anonymous mailings targeted geographically representative U.S. samples of 570 oncologists, 266PMD specialists, and 280 PLM specialists, each randomly assigned one version of the questionnaire. Vignette scores were normalized to a 0–100 numeric rating scale (NRS); a score of50 indicates that the number ofcorrect choices equals the number of incorrect choices (consistent with guessing). Results. Overall response ratewas 49% (oncologists, 39%; PMD specialists, 48%; and PLM specialists, 70%). Average vignette score ranges were 53.2–66.5, 45.6–65.6, and 50.8–72.0 for oncologists,PMDspecialists, andPLMspecialists, respectively. Oncologists scored lower than PLM specialists on both questionnaires and lower than PMD specialists on one. On a 0–10 NRS, oncologists rated their ability to manage pain highly (median 7, with an interquartile range [IQR] of 5–8). Lower ratings wereassigned to pain-related training in medical school (median 3, withan IQRof2–5) and residency/fellowship (median 5, with an IQR of 4–7). Oncologists older than 46–47 years rated their training lower than younger oncologists. Conclusion. These data suggest that oncologists and other medical specialists who manage cancer pain have knowledge deficiencies in cancer pain management. These gaps help clarify the need for pain management education. © AlphaMed Press 2015.


PubMed | Kirby Center for Neurobiology, RA Pain Services, University of Pennsylvania, Highpoint Pain and Rehabilitation Physicians P.C. and MJHS Institute for Innovation in Palliative Care
Type: Journal Article | Journal: Anesthesiology clinics | Year: 2016

Chronic pain is associated with symptoms that may impair a patients quality of life, including emotional distress, fatigue, and sleep disturbance. There is a high prevalence of concomitant pain and sleep disturbance. Studies support the hypothesis that sleep and pain have a bidirectional and reciprocal relationship. Clinicians who manage patients with chronic pain often focus on interventions that relieve pain, and assessing and treating sleep disturbance are secondary or not addressed. This article reviews the literature on pain and co-occurring sleep disturbance, describes the assessment of sleep disturbance, and outlines nonpharmacologic and pharmacologic treatment strategies to improve sleep in patients with chronic pain.


PubMed | Kirby Center for Neurobiology, RA Pain Services, University of Pennsylvania, Highpoint Pain and Rehabilitation Physicians P.C. and MJHS Institute for Innovation in Palliative Care
Type: Journal Article | Journal: Sleep medicine clinics | Year: 2017

Chronic pain is associated with symptoms that may impair a patients quality of life, including emotional distress, fatigue, and sleep disturbance. There is a high prevalence of concomitant pain and sleep disturbance. Studies support the hypothesis that sleep and pain have a bidirectional and reciprocal relationship. Clinicians who manage patients with chronic pain often focus on interventions that relieve pain, and assessing and treating sleep disturbance are secondary or not addressed. This article reviews the literature on pain and co-occurring sleep disturbance, describes the assessment of sleep disturbance, and outlines nonpharmacologic and pharmacologic treatment strategies to improve sleep in patients with chronic pain.


Barrett M.,University of Southern California | Chu A.,MJHS Institute for Innovation in Palliative Care | Chen J.,MJHS Institute for Innovation in Palliative Care | Lam K.Y.,Beth Israel Deaconess Medical Center | And 3 more authors.
Journal of Immigrant and Minority Health | Year: 2016

Although pain can be a powerful influence on health-related quality of life (HRQL) in cancer populations, culturally-based beliefs and behaviors may directly impact HQRL or modify the association between pain and HQRL. Studies of well-defined ethnic groups may clarify these relationships and inform culturally competent clinical practices intended to reduce illness burden. We evaluated HRQL in 121 non-English-speaking Chinese immigrants with cancer pain using the Functional Assessment of Cancer Therapy-General (FACT-G) scale. Overall, 91.2 % were born in China and 86.0 % were Cantonese-speaking; 50.8 % had no formal education (mean age = 63.2 years; 68.6 % women). Although the mean FACT-G score did not differ from U.S. population norms, most subscale scores for Chinese immigrants were lower and the score for social/family well-being was higher (all p < 0.05). Higher educational level, caregiver presence, lower psychological distress, lower pain intensity and interference, and lower symptom distress were associated with better HRQL (all p < 0.05). These findings confirm the importance of diverse influences on HQRL in ethnic Chinese cancer patients with chronic pain and suggest that this group may be distinguished from the majority population by the extent to which social/family well-being is preserved. Future studies in the growing population of Chinese Americans with cancer are needed to evaluate various aspects of social/family well-being and determine whether they modify the association between pain and HRQL. © 2016 Springer Science+Business Media New York


PubMed | MJHS Institute for Innovation in Palliative Care, Beth Israel Deaconess Medical Center and University of Southern California
Type: | Journal: Journal of immigrant and minority health | Year: 2016

Although pain can be a powerful influence on health-related quality of life (HRQL) in cancer populations, culturally-based beliefs and behaviors may directly impact HQRL or modify the association between pain and HQRL. Studies of well-defined ethnic groups may clarify these relationships and inform culturally competent clinical practices intended to reduce illness burden. We evaluated HRQL in 121 non-English-speaking Chinese immigrants with cancer pain using the Functional Assessment of Cancer Therapy-General (FACT-G) scale. Overall, 91.2% were born in China and 86.0% were Cantonese-speaking; 50.8% had no formal education (mean age=63.2years; 68.6% women). Although the mean FACT-G score did not differ from U.S. population norms, most subscale scores for Chinese immigrants were lower and the score for social/family well-being was higher (all p<0.05). Higher educational level, caregiver presence, lower psychological distress, lower pain intensity and interference, and lower symptom distress were associated with better HRQL (all p<0.05). These findings confirm the importance of diverse influences on HQRL in ethnic Chinese cancer patients with chronic pain and suggest that this group may be distinguished from the majority population by the extent to which social/family well-being is preserved. Future studies in the growing population of Chinese Americans with cancer are needed to evaluate various aspects of social/family well-being and determine whether they modify the association between pain and HRQL.


PubMed | MJHS Institute for Innovation in Palliative Care, VA Pacific Islands Health Care System, Consult Statistics Complete Statistical Services and Yeshiva University
Type: Journal Article | Journal: Journal of pain and symptom management | Year: 2016

Evaluating religious/spiritual influences in the growing Chinese-American population may inform the development of culturally relevant palliative care interventions.We assessed the psychometric properties and acceptability of the Daily Spiritual Experiences Scale-Chinese (DSES-C) in Chinese Americans with cancer-related pain.The translated 16-item DSES-C was administered as part of a symptom intervention for Chinese-American cancer patients. Patients were recruited from four New York community oncology practices.Of 321 patients, 78.7% were born in Mainland China, 79.1% spoke Cantonese, and 70.2% endorsed a religious affiliation (Ancestor worship, 31.7%; Chinese God worship, 29.8%; Buddhism, 17.1%; Christianity, 14.0%). In total, 82.6% completed the DSES-C (mean age = 57.7 years; 60.8% women) and 17.4% declined (mean age = 59.3 years; 52.0% women). Reasons for declining included low religiosity or perceived relevance of the scale items and difficulties separating spirituality from religiosity terms. Individuals having a religious affiliation were more likely to complete the DSES-C, whereas those not engaging in individual spiritual/religious practices or frequent group spiritual/religious practices tended to decline (all P < 0.05). The DSES-C (mean total score = 43.6, SD = 19.3) demonstrated high reliability (alpha = 0.94). Exploratory factor analysis suggested a one-factor solution, with significant loadings (>0.40) across items except Item 14 (Accept others). Construct validity was suggested by a positive association between DSES-C scores and having a religious affiliation (P < 0.05).In Chinese Americans with cancer pain, the DSES-C demonstrated acceptable psychometrics. Some participants experienced linguistic or cultural barriers preventing completion. Future investigations should provide additional validation in different Asian subgroups and those with varied medical conditions.


PubMed | The Cystic Fibrosis Center, James ters Va Medical Center and MJHS Institute for Innovation in Palliative Care
Type: Journal Article | Journal: Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society | Year: 2016

Cystic fibrosis (CF) causes high illness burden. Screening may identify patients who could potentially benefit from interventions for symptoms or other sources of distress. We evaluated the feasibility of a web-based system for routine monitoring.Adult CF patients enrolled in a study of palliative care service delivery completed web-based assessments every 30 days on global distress, physical and psychological symptom distress, and the perceived benefits of discussing advance care planning (ACP) with CF clinicians. Feasibility was assessed by the rate of survey completion, survey reminders, and missed surveys during a 9-month rolling enrollment period.Of 74 participants (47.3% women, 94.4% white), 36.7% had comorbid diabetes, and 56.9% had an FEV1% predicted score of 40-69. In total, patients completed 456 (80.6%) of 566 surveys every 30 days over the assessment period. Sixty-five (87.8%) completed 405 (79.7%) of 508 surveys online and 9 (12.2%) completed 51 (88.0%) of 58 surveys using a combination of online, telephone, and mail-based methods. Many surveys were completed without reminders (online: 261 [64.4%] of 405; combined methods: 29 [56.9%] of 51), with 166 (36.4%) surveys requiring 1 or more reminders. Further, 23.0% (17) of patients noted elevated global distress; 20.3% (15) endorsed physical symptom distress, 12.2% (9) had psychological distress, and 58.1% (43) reported that discussing ACP would be beneficial.Repeated web-based screening for symptom distress and ACP preferences is feasible in adult CF patients. Future studies should assess the systems generalizability and staff resources when implementing reminders and non-web methods of completion.


PubMed | MJHS Institute for Innovation in Palliative Care, University of Edinburgh, Duke University and Flinders University
Type: | Journal: Journal of pain and symptom management | Year: 2017

The World Health Organisation (WHO) essential medications list for hospice / palliative care reflects that, with the judicious use of currently available medications, the majority of symptoms can be lessened, and some controlled completely. Even with optimal use of current medications, symptom control is still unacceptable for many people. Currently available medications offer great benefit to a minority of patients, some benefit to an additional group, and no benefit or harms to others. In symptom control, development of new drugs is advancing at a glacial pace, contrasting to the rapid advances seen in many other disciplines. Specialists in palliative care should agree on several principles consequently: Access to symptom control drugs codified in the WHO Essential Medicines list deserves the strongest support from national policies and professional guidelines, especially in resource-challenged countries. The optimal use of currently available symptom control drugs cannot yield acceptably high rates of net benefits. There is a compelling need to identify patient sub-groups that are likely to benefit from available medications, and provide rigorous empirical support for indications, dosing and route of administration for clinical practice. New therapies are needed requiring an accelerated effort to investigate further the pathophysiology, neurobiology, and pharmacogenetics of distressing symptoms, and factors contributing to variations in drug response. This development requires a lengthy lead time. Smarter ways to promote new knowledge into practice are needed as no drug will be suitable for all patients. We need to improve clinical characterisation and biomarker technology to bring the best drugs to the right patients every time.

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