Unmet Family Needs in Hospice and Research Priorities: Perspectives From a National Sample of Hospice Agencies

Abstract Although hospice cares for nearly 1.5 million patients and families annually, little is known about practitioners’ opinions of current gaps in care and research. To this end, we posed two open-ended questions to hospice representatives to identify practice-relevant research priorities. Data stem from two optional questions (Q1: N = 72; Q2: N = 73) appended to Cagle et al.’s (2020) national survey of 600 randomly selected hospices, stratified by state and profit status. Most participants provided the majority of care in-home (84.7%; 79.5%) and worked at a medium-sized hospice (50.0%; 49.3%). Responses to Q1 (“What is the biggest unmet need for hospice patients and families?”) and Q2 (“In your opinion, what is the most pressing topic that hospice researchers need to study?”) were analyzed for content and then synthesized. Analyst triangulation and peer debriefing improved trustworthiness. Emerging domains included: access to hospice, hospice services and workforce issues, and education. The access to hospice domain contained a subtheme regarding the need for earlier referrals. Participants noted that short lengths of stay undermine the clinical benefits to patients and families, and that hospice enrollment criteria may contribute to inadequate lengths of stay. The hospice services and workforce issues domain largely focused on burnout prevention. Participants acknowledged that provider self-care was linked to the quality of patient care. The education domain contained subthemes related to improving physician knowledge regarding prognostication and referral, and to patients and families regarding misconceptions about hospice care. Findings highlight critical needs for future hospice research and policy change.

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The Hospice Farewell: Ideological Perspectives of its Professional Practitioners

OMEGA - Journal of Death and Dying ◽

10.2190/63tk-bmhx-lmur-1e1m ◽

1990 ◽

Vol 21 (4) ◽

pp. 283-300 ◽

Cited By ~ 9

Author(s):

Anoel Rinaldi ◽

Michael C. Kearl

Keyword(s):

Hospice Care ◽

National Sample ◽

High Rate ◽

Older Individuals ◽

Modified Delphi ◽

Death Denial ◽

Cultural Climate ◽

Quality Of Death ◽

Modified Delphi Technique ◽

Professional Practitioners

This research examines a social service devoted to “good deaths” in our country: hospice. Using a modified Delphi technique, a national sample of hospice experts ( n = 48) was questioned in order to elicit group judgments about hospice ideology, the issue of control over one's own death trajectory, and hospice's relevance for older individuals. The respondents generally concurred that hospice, influenced by the work of Kübler-Ross, represents a radical departure in how we die, a reaction to the quality of death within a cultural climate of death denial, and, in some sense, a demodernization movement. While a high rate of consensus was obtained on many of the issues that evolved, little evidence of a coherent ideology could be detected linking notions of hospice origins, issues of patient control, and suitability of hospice care for older individuals.

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Overlap of Pain and Depression Among Nursing Home Residents With Advanced Alzheimer’s Disease and Related Dementia

Innovation in Aging ◽

10.1093/geroni/igaa057.138 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 42-43

Author(s):

Emmanuelle Belanger ◽

Richard Jones ◽

Gary Epstein-Lubow ◽

Kate Lapane

Keyword(s):

Alzheimer’S Disease ◽

Alzheimer's Disease ◽

Nursing Home ◽

Depressive Symptoms ◽

Hospice Care ◽

Care Delivery ◽

Nursing Home Residents ◽

National Sample ◽

Fee For Service ◽

Minimum Dataset

Abstract Physical and psychological suffering are interrelated and should be assessed together as part of palliative care delivery. We aimed to describe the overlap of pain and depressive symptoms among long-stay nursing home (NH) residents with advanced Alzheimer’s disease and related dementia (ADRD), and to determine the incidence of pain and depressive symptoms. We conducted a retrospective study of a US national sample of fee-for-Service Medicare beneficiaries who became long-stay NH residents in 2014-2015, had two consecutive quarterly Minimum Dataset assessments (90 and 180 days +/- 30 days), and had a diagnosis of ADRD in the Chronic Condition Warehouse and moderate to severe cognitive impairment (N= 92,682). We used descriptive statistics and Poisson regression models to examine the incidence of each symptom controlling for age, sex, and concurrent hospice care. Sub-groups with self-reported and observer-rated symptoms (pain/PHQ-9) were modelled separately, as were those switching between the two. The prevalence of depressive symptoms was low (5.7%), while pain was more common (18.2%). Across various subgroups, 2% to 4% had both pain and depression, but between 20% and 25% were treated with both antidepressants and scheduled analgesia. Depressed residents at baseline had an incidence rate ratio (IRR) of pain of 1.2 at the second assessment, while the residents with pain at baseline had an IRR of depressive symptoms of 1.3 at the second assessment. Our results support the expected relationship between pain and depressive symptoms in a national sample of long-stay NH residents with advanced ADRD, suggesting the need for simultaneous clinical management.

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Effects of sport-related repetitive subconcussive head impacts on biofluid markers: a scoping review protocol

BMJ Open ◽

10.1136/bmjopen-2020-046452 ◽

2021 ◽

Vol 11 (6) ◽

pp. e046452

Author(s):

Liivia-Mari Lember ◽

Michail Ntikas ◽

Stefania Mondello ◽

Lindsay Wilson ◽

Angus Hunter ◽

...

Keyword(s):

Scoping Review ◽

Unmet Need ◽

Research Priorities ◽

Medical Decision ◽

Cochrane Library ◽

Eligibility Criteria ◽

Head Impacts ◽

Review Protocol ◽

Ebsco Host ◽

Clinical Trials Registry

IntroductionSport-related repetitive subconcussive head impacts (RSHIs) are increasingly thought to be associated with adverse long-term outcomes. However, owing to potentially subtle effects, accurate assessment of harm to the brain as a consequence of RSHI is a major challenge and an unmet need. Several studies suggest that biofluid markers can be valuable objective tools to aid the diagnosis and injury characterisation and help in medical decision-making. Still, by and large, the results have been limited, heterogeneous and inconsistent. The main aims of this scoping review are therefore (1) to systematically examine the extent, nature and quality of available evidence from studies investigating effects of RSHI on fluid biomarkers and (2) to formulate guidelines and identify gaps with the aim to inform future clinical studies and the development of research priorities.Methods and analysesWe will use a comprehensive search strategy to retrieve all available and relevant articles in the literature. The following electronic databases will be systematically searched: MEDLINE (EBSCO host; from 1809 to 2020); Scopus (from 1788 to 2020); SPORTDiscus (from 1892 to 2020); CINAHL Complete (from 1937 to 2020); PsycINFO (from 1887 to 2020); Cochrane Library (to 2020); OpenGrey (to 2020); ClinicalTrials.gov (to 2020) and WHO International Clinical Trials Registry Platform (to 2020). We will consider primarily biomedical studies evaluating the biofluid markers following RSHI. Two independent reviewers will screen articles for inclusion using predefined eligibility criteria and extract data of retained articles. Disagreements will be resolved through consensus or arbitrated by a third reviewer if necessary. Data will be reported qualitatively given the heterogeneity of the included studies. In synthesising the evidence, we will structure results by markers, sample types, outcomes, sport and timepoints.Ethics and disseminationEthics approval is not required. We will submit results for peer-review publication, and present at relevant conferences.

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Prevalence and unmet need for diabetes care across the care continuum in a national sample of South African adults: Evidence from the SANHANES-1, 2011-2012

PLoS ONE ◽

10.1371/journal.pone.0184264 ◽

2017 ◽

Vol 12 (10) ◽

pp. e0184264 ◽

Cited By ~ 29

Author(s):

Andrew Stokes ◽

Kaitlyn M. Berry ◽

Zandile Mchiza ◽

Whadi-ah Parker ◽

Demetre Labadarios ◽

...

Keyword(s):

South African ◽

Diabetes Care ◽

Unmet Need ◽

National Sample ◽

Care Continuum

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VP75 Improving Access To Ultra-Orphan Medicines In NHS Scotland

International Journal of Technology Assessment in Health Care ◽

10.1017/s0266462319003301 ◽

2019 ◽

Vol 35 (S1) ◽

pp. 93-93

Author(s):

Noreen Downes ◽

Jan Jones ◽

Anne Lee ◽

Ailsa Brown ◽

Pauline McGuire ◽

...

Keyword(s):

Unmet Need ◽

Clinical Effectiveness ◽

Patient Reported Outcome Measures ◽

Patient Reported Outcome ◽

Quality Adjusted Life Year ◽

Final Decision ◽

Stage Of Development ◽

Patient Reported ◽

Evidence Collection ◽

Clinical Benefits

IntroductionMedicines for very rare conditions present challenges for healthcare globally due to uncertain evidence and often extremely high costs. In 2014, SMC introduced an ultra-orphan framework placing less emphasis on the cost per quality adjusted life year (QALY). Despite this, many medicines continued to be not recommended. A new pathway aimed at improved patient access based on further evidence collection is now being implemented.MethodsThe development of the new pathway has involved collaboration with key stakeholders including patient groups, the pharmaceutical industry, and clinicians. Medicines that meet a new definition (based on four criteria including the prevalence of the condition treated) will be appraised by the SMC committee and a data collection plan will then be agreed with the pharmaceutical company.ResultsFrom April 2019, medicines validated as ultra-orphans will initially be appraised using the broader decision-making framework and the SMC committee will outline key uncertainties in the clinical effectiveness. The medicine will then be available for a period of at least three years while further data are gathered, potentially comprising ongoing clinical trials, registry data, and patient reported outcome measures. SMC will then re-assess the clinical and economic evidence to inform a final decision on routine use of the medicine in NHS Scotland.ConclusionsThe new pathway for ultra-orphan medicines will allow further evidence on their longer-term clinical benefits to be collected before a final decision on routine use. This approach reflects the current direction of travel in medicines regulation, by making medicines that address an unmet need available to patients at an earlier stage of development.

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Patient-reported outcomes (PROs), unmet need, and psychosocial adaptation among recent breast cancer (BC) survivors.

Journal of Clinical Oncology ◽

10.1200/jco.2016.34.3_suppl.212 ◽

2016 ◽

Vol 34 (3_suppl) ◽

pp. 212-212

Author(s):

Steven C Palmer ◽

Angela DeMichele ◽

Marilyn M. Schapira ◽

Karen Glanz ◽

Abigail Blauch ◽

...

Keyword(s):

Mental Health ◽

Psychological Functioning ◽

Unmet Need ◽

Recurrence Risk ◽

Psychosocial Adaptation ◽

Anxiety And Depression ◽

Family Needs ◽

Physical And Mental Health ◽

Health Maintenance ◽

Patient Reported

212 Background: BC survivors have physical and psychosocial symptoms which, if unaddressed, result in unmet need. Unmet need has been examined primarily in long term survivors, and understanding the characteristics associated with unmet need is under-studied among recent patients. Methods: Eligibility included non-metastatic BC treated < 1 year prior. Participants completed a PRO symptom measure and reported unmet need for assistance for symptoms. Concerns about recurrence risk, late effects, health maintenance, family needs, and hereditary risks were assessed. Anxiety and depressive symptoms were assessed using the HADS; quality of life (QoL),using the SF-12. Results: Participants (N = 137) were primarily white (72%), middle-aged (M = 55 yrs), and treated for Stage I (47%) or II (38%) BC. Participants reported an average of 10.7 symptoms (R = 0-18), while unmet need was less common (M = 2.6, R = 0-15). Physical and mental health QoL were similar to norm values (M = 48.0; M = 53.5). 13% and 29% met “caseness” (i.e., criteria for significant elevation) for depression or anxiety on the HADS, respectively. Unmet need was trichotomized into no (0), low (1-3), and elevated (4-15) groups. Level of unmet need was not predicted by demographic variables, time from end of treatment, treatment exposure, staging, or physical QoL. Groups differed significantly with respect to level of patient concern, mental health QoL, anxiety and depression, and meeting caseness for depression on the HADS (all p < 0.03) with elevated needs being associated with worse outcomes. In multivariate analysis, overall unmet need was independently predicted by depression and level of survivorship concerns (R2 = .28, p < .001). Conclusions: In the year after treatment, patient reported symptoms are common, but unmet need is less common. QoL is similar to national norms. Higher unmet need is associated with worse psychosocial adaptation, including QoL, patient concerns, anxiety, and depression. In particular, depression and survivorship concerns independently predict unmet need. Addressing unmet needs among recent BC survivors may be one means of improving the psychological functioning of these survivors.

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Prioritising research and dissemination: a Delphi study of NHS Highland midwives

Library and Information Research ◽

10.29173/lirg522 ◽

2012 ◽

Vol 36 (113) ◽

pp. 32-47 ◽

Cited By ~ 1

Author(s):

Kathleen Yvonne Irvine ◽

Wendy Jessiman ◽

Alison Felce

Keyword(s):

Delphi Study ◽

Delphi Technique ◽

Information Needs ◽

Research Priorities ◽

Place Of Birth ◽

Second Stage ◽

Second Stage Of Labour ◽

Workforce Issues ◽

Obesity In Pregnancy ◽

In Pregnancy

This paper reports on a Delphi study undertaken by a health librarian and two midwifery professionals, to determine the research priorities of midwives working in NHS Highland. Six important topics were identified: workforce issues, second stage of labour, obesity in pregnancy, women’s expectations of pregnancy and of childbirth, place of birth, and breastfeeding. Related evidence was examined to identify topics where dissemination of existing evidence was needed. The study dealt both with the practice of midwifery in general and with the information needs of local midwives in particular. The Delphi technique was found to be a useful method to determine research priorities but it was not without its limitations.

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Communicating Scientific Uncertainty About the COVID-19 Pandemic: Online Experimental Study of an Uncertainty-Normalizing Strategy (Preprint)

10.2196/preprints.27832 ◽

2021 ◽

Author(s):

Paul K J Han ◽

Elizabeth Scharnetzki ◽

Aaron M Scherer ◽

Alistair Thorpe ◽

Christine Lary ◽

...

Keyword(s):

Crisis Communication ◽

Risk Perceptions ◽

Ambiguity Aversion ◽

Communication Strategies ◽

Unmet Need ◽

National Sample ◽

Communication Strategy ◽

Scientific Uncertainty ◽

Psychological Responses ◽

Risk Reducing

BACKGROUND Communicating scientific uncertainty about public health threats such as COVID-19 is an ethically desirable task endorsed by expert guidelines on crisis communication. However, the communication of scientific uncertainty is challenging because of its potential to promote <i>ambiguity aversion</i>—a well-described syndrome of negative psychological responses consisting of heightened risk perceptions, emotional distress, and decision avoidance. Communication strategies that can inform the public about scientific uncertainty while mitigating ambiguity aversion are a critical unmet need. OBJECTIVE This study aimed to evaluate whether an “uncertainty-normalizing” communication strategy—aimed at reinforcing the expected nature of scientific uncertainty about the COVID-19 pandemic—can reduce ambiguity aversion, and to compare its effectiveness to conventional public communication strategies aimed at promoting hope and prosocial values. METHODS In an online factorial experiment conducted from May to June 2020, a national sample of 1497 US adults read one of five versions of an informational message describing the nature, transmission, prevention, and treatment of COVID-19; the versions varied in level of expressed scientific uncertainty and supplemental focus (ie, uncertainty-normalizing, hope-promoting, and prosocial). Participants then completed measures of cognitive, emotional, and behavioral manifestations of ambiguity aversion (ie, perceived likelihood of getting COVID-19, COVID-19 worry, and intentions for COVID-19 risk-reducing behaviors and vaccination). Analyses assessed (1) the extent to which communicating uncertainty produced ambiguity-averse psychological responses; (2) the comparative effectiveness of uncertainty-normalizing, hope-promoting, and prosocial communication strategies in reducing ambiguity-averse responses; and (3) potential moderators of the effects of alternative uncertainty communication strategies. RESULTS The communication of scientific uncertainty about the COVID-19 pandemic increased perceived likelihood of getting COVID-19 and worry about COVID-19, consistent with ambiguity aversion. However, it did not affect intentions for risk-reducing behaviors or vaccination. The uncertainty-normalizing strategy reduced these aversive effects of communicating scientific uncertainty, resulting in levels of both perceived likelihood of getting COVID-19 and worry about COVID-19 that did not differ from the control message that did not communicate uncertainty. In contrast, the hope-promoting and prosocial strategies did not decrease ambiguity-averse responses to scientific uncertainty. Age and political affiliation, respectively, moderated the effects of uncertainty communication strategies on intentions for COVID-19 risk-reducing behaviors and worry about COVID-19. CONCLUSIONS Communicating scientific uncertainty about the COVID-19 pandemic produces ambiguity-averse cognitive and emotional, but not behavioral, responses among the general public, and an uncertainty-normalizing communication strategy reduces these responses. Normalizing uncertainty may be an effective strategy for mitigating ambiguity aversion in crisis communication efforts. More research is needed to test uncertainty-normalizing communication strategies and to elucidate the factors that moderate their effectiveness.

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Timeliness of end-of-life (EOL) discussions for blood cancers: A national survey of hematologic oncologists.

Journal of Clinical Oncology ◽

10.1200/jco.2015.33.29_suppl.13 ◽

2015 ◽

Vol 33 (29_suppl) ◽

pp. 13-13

Author(s):

Oreofe Olukemi Odejide ◽

Angel Cronin ◽

Nolan Condron ◽

Craig Earle ◽

Joanne Wolfe ◽

...

Keyword(s):

Hospice Care ◽

Response Rate ◽

Multivariable Analysis ◽

Great Majority ◽

National Sample ◽

Initial Resuscitation ◽

National Cohort ◽

American Society ◽

Eol Care ◽

Resuscitation Status

13 Background: Although timely EOL discussions have been shown to positively impact EOL care for patients with advanced solid tumors, little is known about EOL discussions for patients with blood cancers. Methods: In 2014, we mailed a 30-item survey to a national sample of hematologic oncologists randomly selected from the American Society of Hematology clinical directory. The survey was developed through focus groups (n=20) and cognitive debriefing (n=5) with hematologic oncologists. We report preliminary data regarding timing of EOL discussions. Results: We received 349 surveys from 48 states (response rate: 57.3%). Median age was 52 years, median time in practice was 25 years, and 43% practiced primarily in tertiary centers. Of all respondents, 56% reported that EOL discussions with blood cancer patients typically occur “too late.” The great majority also reported conducting initialdiscussions regarding resuscitation status, desire for hospice care, and preferred site of death at times other than periods of disease stability (Table). In multivariable analysis adjusting for gender, years in practice, and self-reported confidence leading EOL discussions, respondents practicing in tertiary centers were more likely to report that such discussions occur “too late” (OR=1.91, 95% CI [1.22, 2.98]). Similarly, hematologic oncologists practicing in tertiary centers were less likely to report conducting timely initial resuscitation status discussions (before acute hospitalization or before death clearly imminent, OR=0.52, 95% CI [0.33, 0.82]). Conclusions: The majority of hematologic oncologists in our large national cohort reported late EOL discussions. Moreover, clinicians in tertiary centers were more likely to report late discussions, even when prompted about specific EOL topics. Our data suggest that physician-focused interventions to improve timing of EOL discussions for blood cancers should target those practicing in tertiary centers. [Table: see text]

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