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Do patients with advanced cancer and unmet palliative care needs have an interest in receiving palliative care services?

ABSTRACT: It is not known whether unmet palliative care needs are associated with an interest in palliative care services among patients with advanced cancer receiving ongoing oncology care.To assess the association between unmet palliative care needs and patient interest in subspecialty palliative care services.Cross-sectional telephone survey.One hundred sixty-nine patients with advanced cancer receiving care from 20 oncologists at two academic cancer centers.Surveys assessed palliative care needs in six domains. Patients were read a description of palliative care and then asked three questions about their current interest in subspecialty palliative care services (perceived need, likelihood of requesting, willingness to see if their oncologist recommended; all outcomes on 0-10 Likert scale).The vast majority of patients described unmet palliative care needs, most commonly related to psychological/emotional distress (62%) and symptoms (62%). In fully adjusted models accounting for clustering by oncologist, unmet needs in these domains were associated with a higher perceived need for subspecialty palliative care services (psychological/emotional needs odds ratio [OR] 1.30; 95% confidence interval [CI] 1.06-1.58; p=0.01; symptom needs OR 1.27; 95% CI 1.01-1.60; p=0.04). There was no significant association between unmet needs and likelihood of requesting palliative care services. Willingness to see palliative care if oncologist recommended was high (mean 8.6/10, standard deviation [SD] 2).Patients with advanced cancer and unmet symptom and psychological/emotional needs perceive a high need for subspecialty palliative care services but may not request them. Efforts to increase appropriate use of subspecialty palliative care for cancer may require oncologist-initiated referrals.

SUBMITTER: Schenker Y

PROVIDER: S-EPMC4039000 | biostudies-literature | 2014 Jun

REPOSITORIES: biostudies-literature

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Do patients with advanced cancer and unmet palliative care needs have an interest in receiving palliative care services?

Schenker Yael Y Park Seo Young SY Maciasz Rachael R Arnold Robert M RM

Journal of palliative medicine 20140327 6

<h4>Background</h4>It is not known whether unmet palliative care needs are associated with an interest in palliative care services among patients with advanced cancer receiving ongoing oncology care.<h4>Objective</h4>To assess the association between unmet palliative care needs and patient interest in subspecialty palliative care services.<h4>Design</h4>Cross-sectional telephone survey.<h4>Subjects and setting</h4>One hundred sixty-nine patients with advanced cancer receiving care from 20 oncolo ...[more]

PMID: 24673544

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Project description:While home is frequently expressed as the favorite place of death (PoD) among terminally ill cancer patients, various factors affect the fulfillment of this wish. The determinants of the PoD of cancer patients in countries without healthcare system-integrated palliative and supportive care have not been studied before. This study aimed at identifying the predictors of the PoD of patients who suffer from advanced cancer by developing a reliable predictive model among who received home-based palliative care in Iran as a representative of the countries with isolated provision of palliative care services. In a cross-sectional study, electronic records of 4083 advanced cancer patients enrolled in the Iranian Cancer Control Center (MACSA) palliative homecare program, who died between February 2018 and February 2020 were retrieved. Multivariable binary logistic regression analysis as well as subgroup analyses (location, sex, marital status, and tumor topography) was performed to identify the predictors of PoD. Of the 2398 cases included (mean age (SD) = 64.17 (14.45) year, 1269 (%52.9) male), 1216 (50.7%) patients died at home. Older age, presence and intensity of medical homecare in the last two weeks and registration in the Tehran site of the program were associated with dying at home (P < 0.05). Gynecological or hematological cancers, presence and intensity of the calls received from the remote palliative care unit in the last two weeks were predictors of death at the hospital (p < 0.05). The model was internally and externally validated (AUC = 0.723 (95% CI = 0.702-0.745; P < 0.001) and AUC = 0.697 (95% CI = 0.631-0.763; P < 0.001) respectively). Our model highlights the demographic, illness-related and environmental determinants of the PoD in communities with patchy provision of palliative care. It also urges policymakers and service providers to identify and take the local determinant of the place of death into account to match the goals of palliative and supportive services with the patient preferences.

Project description:BackgroundThis systematic review aimed to identify the unmet care needs and their associated variables in patients with advanced cancer and informal caregivers, alongside summarizing the tools used for needs assessment.MethodsTen electronic databases were searched systematically from inception of each database to December 2016 to determine eligible studies. Studies that considered the unmet care needs of either adult patients with advanced cancer or informal caregivers, regardless of the study design, were included. The Mixed Methods Appraisal Tool was utilized for quality appraisal of the included studies. Content analysis was used to identify unmet needs, and descriptive analysis was adopted to synthesize other outcomes.ResultsFifty studies were included, and their methodological quality was generally robust. The prevalence of unmet needs varied across studies. Twelve unmet need domains were identified in patients with advanced cancer, and seven among informal caregivers. The three most commonly reported domains for patients were psychological, physical, and healthcare service and information. The most prominent unmet items of these domains were emotional support (10.1-84.4%), fatigue (18-76.3%), and "being informed about benefits and side-effects of treatment" (4-66.7%). The most commonly identified unmet needs for informal caregivers were information needs, including illness and treatment information (26-100%) and care-related information (21-100%). Unmet needs of patients with advanced cancer were associated with their physical symptoms, anxiety, and quality of life. The most commonly used instruments for needs assessment among patients with advanced cancer were the Supportive Care Needs Survey (N = 8) and Problems and Needs in Palliative Care questionnaire (N = 5). The majority of the included studies investigated unmet needs from the perspectives of either patients or caregivers with a cross-sectional study design using single time-point assessments. Moreover, significant heterogeneity, including differences in study contexts, assessment methods, instruments for measurement, need classifications, and reporting methods, were identified across studies.ConclusionBoth advanced cancer patients and informal caregivers reported a wide range of context-bound unmet needs. Examining their unmet needs on the basis of viewing patients and their informal caregivers as a whole unit will be highly optimal. Unmet care needs should be comprehensively evaluated from the perspectives of all stakeholders and interpreted by using rigorously designed mixed methods research and longitudinal studies within a given context.

Project description:BackgroundAlthough meta-analyses have demonstrated that physical activity can positively impact quality of life outcomes in early stage cancer patients, it is not yet known whether these benefits can be extended to patients with advanced cancer. In a previous pilot survey of patients with advanced cancer with a median survival of 104 days, participants felt willing and able to participate in a physical activity intervention, and reported a strong preference for walking and home-based programming. Here, we report on the initial development and feasibility of a home-based functional walking program in patients with advanced cancer receiving palliative care.MethodsNine adult patients were recruited from outpatient palliative care clinics and palliative home care. A pilot intervention trial was conducted over a 6-week period. The McGill Quality of Life Questionnaire (MQOL), Late Life Function and Disability Instrument (LLFDI), Edmonton Symptom Assessment System (ESAS), Seniors Fitness Test, four-test balance scale, and grip strength, were performed pre- and post-intervention. Participants wore activPAL™ accelerometers to monitor ambulatory activity levels.ResultsOf the nine recruited participants, three participants dropped out prior to baseline testing due to hospital admission and feeling overwhelmed, and three participants dropped out during the intervention due to severe symptoms. Only three participants completed the intervention program, pre- and post-intervention assessments: two reported improvements in total MQOL scores, yet all three shared an overall trend towards worsening symptom and total fatigue scores post-intervention. Two participants passed away within 90 days of completing the intervention.ConclusionsThis case series demonstrates the challenges of a physical activity intervention in patients with advanced cancer receiving palliative care. Further feasibility research is required in this patient population.Trial registrationThis study is registered under ClinicalTrials.gov as NCT00438620.

Project description:BackgroundThere are increasing calls to establish heart failure (HF) clinics due to their effectiveness in the interdisciplinary management of people living with HF. However, although a recommendation exists for palliative care (PC) providers to be part of the interdisciplinary team, few of the established HF clinics include them in their teams. Therefore, in this qualitative study, we aimed to understand the unmet PC needs of patients with HF attending an already established HF clinic.MethodsSecondary qualitative analysis of structured interviews undertaken within a larger study to validate the German version of the Needs Assessment Tool: Progressive Disease-Heart Failure (NAT: PD-HF). The NAT: PD-HF is a tool that aims to assess unmet needs in patients with HF. The interviews took place between January and March 2020 with patients from the ambulatory HF Clinic of a University Hospital in Switzerland. For this analysis, we transcribed and thematically analyzed the longest and most content-rich interviews until we reached data saturation at 31 participants. The interviews lasted 31 min on average (24-48 min).ResultsParticipants (n = 31) had a median age of 64 years (IQR 56-77), the majority had reduced ejection fraction, were men, and were classified as having a New York Heart Association functional class II. Participants were in general satisfied with the treatment and information received at the HF clinic. However, they reported several unmet needs. We therefore identified three ambivalences as main themes: (I) "feeling well-informed but missing essential discussions", (II) "although feeling mostly satisfied with the care, remaining with unmet care needs", and (III) "fearing a referral to palliative care but acknowledging its importance".ConclusionAlthough patients who are receiving multidisciplinary management in ambulatory HF clinics are generally satisfied with the care received, they remain with unmet needs. These unmet needs, such as the need for advance care planning or the need for timely and tactful end-of-life discussions, can be fulfilled by PC providers. Including personnel trained in PC as part of the multidisciplinary team could help to address patients' needs, thus improving the quality of care and the quality of life of people living with HF.

Project description:INTRODUCTION:The benefits of palliative care rely on how healthcare professionals assess patients' needs in the initial encounter/s; crucial to the design of a personalised therapeutic plan. However, there is currently no evidence-based guideline to perform this needs assessment. We aim to design and evaluate a proactive and systematic method for the needs assessment using quality guidelines for developing complex interventions. This will involve patients, their relatives and healthcare professionals in all phases of the study and its communication to offer clinical practice a reliable approach to address the palliative needs of patients. METHODS AND ANALYSIS:To design and assess the feasibility of an evidence-based, proactive and systematic Multidimensional needs Assessment in Palliative care (MAP) as a semistructured clinical interview guide for initial palliative care encounter/s in patients with advanced cancer. This is a two-phase multisite project conducted over 36 months between May 2019 and May 2022. Phase I includes a systematic review, discussions with stakeholders and Delphi consensus. The evidence gathered from phase I will be the basis for the initial versions of the MAP, then submitted to Delphi consensus to develop a preliminary guide of the MAP for the training of clinicians in the feasibility phase. Phase II is a mixed-methods multicenter feasibility study that will assess the MAP's acceptability, participation, practicality, adaptation and implementation. A nested qualitative study will purposively sample a subset of participants to add preliminary clues about the benefits and barriers of the MAP. The evidence gathered from phase II will build a MAP user guide and educational programme for use in clinical practice. ETHICS AND DISSEMINATION:Ethical approval for this study has been granted by the university research ethics committee where the study will be carried out (approval reference MED-2018-10). Dissemination will be informed by the results obtained and communication will occur throughout.

Project description:IntroductionThis study examined emergency department (ED) presentations of patients with end of life (EOL) conditions and patients having met and unmet palliative care needs were compared.MethodsPresentations for EOL conditions were prospectively identified and screened for palliative care needs. Descriptive data were reported as proportions, means or medians. Bi-variable analysis for dichotomous and continuous variables were performed by chi-squared and T-tests (p≤0.01), respectively. A multivariable logistic regression model identified factors associated with having unmet palliative needs and reported adjusted odds ratios (aOR) with 95% confidence intervals (CI).ResultsOverall, 663 presentations for EOL conditions were identified; 518 (78%) involved patients with unmet palliative care needs. Presentations by patients with unmet palliative needs were more likely to involve consultations (80% vs. 67%, p = 0.001) and result in hospitalization (69% vs. 51%, p<0.001) compared to patients whose palliative needs were met. Patients with unmet palliative care needs were more likely to have previous ED visits (73% unmet vs. 48% met; p<0.001). While medication, procedures, investigations and imaging ordering were high across all patients with EOL conditions, there were no significant differences between the groups. Consultations with palliative specialists in the ED (6% unmet vs. 1% met) and following discharge (29% unmet vs. 18% met) were similarly uncommon. Patients having two or more EOL conditions (aOR = 2.41; 95% CI: 1.16, 5.00), requiring hospitalization (aOR = 1.93; 95% CI: 1.30, 2.87), and dying during the ED visit (aOR = 2.15; 95% CI: 1.02, 4.53) were strongly associated with having unmet palliative care needs.ConclusionsMost ED presentations for EOL conditions were made by patients with unmet palliative care needs, who were significantly more likely to require consultation, hospitalization, and to die. Referrals to palliative care services during and after the ED visit were infrequent, indicating important opportunities to promote these services.

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Do patients with advanced cancer and unmet palliative care needs have an interest in receiving palliative care services?

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Do patients with advanced cancer and unmet palliative care needs have an interest in receiving palliative care services?

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