Integrated Palliative Care Outcome Scale Research Articles

Unmet Palliative Care Needs of Patients with Stage B Chronic Heart Failure Classified by the American Heart Association/American College of Cardiology

This study sought to explore the unmet palliative care needs of patients diagnosed with Stage B chronic heart failure (CHF) according to the American Heart Association (AHA) and American College of Cardiology (ACC) classifications. We conducted this cross-sectional study between June 1 and August 31, 2020, at Kobe University Hospital. Patients were asked to complete the Integrated Palliative care Outcome Scale (IPOS) along with a customized questionnaire developed by a multidisciplinary team. These tools were filled out by the patients themselves or with help from family members. A total of 101 patients participated in the study, with 55 of them (55%) falling into the Stage B CHF group as classified by AHA/ACC. Among the physical symptoms, 22% reported dyspnea and 20% reported drowsiness as common concerns. Regarding specific problems, 47% identified issues related to exercise, 62% with eating, 26% with finances, and 18% with employment. Notably, financial difficulties were found to be significantly more common among Stage B patients when compared to those in Stages C and D (odds ratio [OR]: 5.22; 95% confidence interval [95% CI]: 1.03–26.5; p = 0.032). Almost 79% of Stage B patients expressed a desire to understand the progression of their disease. In conclusion, stage B CHF patients may face financial difficulties and have unmet informational needs. Therefore, further research is necessary to explore these aspects in greater detail.

Abstract 4134569: Palliative care needs assessment by integrated palliative care outcome scale in hospitalized heart failure patients: an observational study

Background and purpose: Patients with heart failure (HF) have a high burden of palliative care needs (PCN) and a worse prognosis that is not lower than cancer. The Integrated Palliative Care Outcome Scale (IPOS) is a scale that evaluates PCN in illness patients, mostly in cancer. Purpose: To evaluate the PCN in hospitalized heart failure patients by IPOS and its relation with patients’ characteristics and mortality. Methodology: A cross-sectional study was conducted on 160 HF hospitalized patients in Vietnam, who were evaluated by IPOS, including questions using a 5-point Likert scale (0 [best]–4 [worst] points) about physical symptoms (10 items), emotional symptoms (4 items), and communication and practical issues (3 items). Patients were determined to have PCN if having ≥ two items with 4 points or ≥ 3 items with ≥ 3 points. Results and discussions: Mean age: 69,57 ± 11,95 years, male: 68.75%, mean LVEF: 44.19 ±16.11%, and NT-proBNP level: 9107.3 ± 30459.1ng/L, the percentage of patients with PCN was 59.38%. The majority of patients had moderate levels (2 points) of dyspnea (38.13%), weakness (35.0%), and low levels (0 or 1 point) of other physical symptoms. Moderate levels (2 points) were the most common in the patient’s anxiety (43.13%) and family anxiety (51.25%), feeling at peace (40.0%), sharing feelings (55.0%), enough information (45.0%), and practical issue (45.0%). Having PCN was significantly correlated to the duration of heart failure, eGFR, and usage of intravenous medication but not related to heart failure severity (NYHA class, LVEF, NT-ProBNP level) and other characteristics (age, gender, residency, educational levels, occupation). Having PCN was independently associated with higher all-cause mortality after discharge with follow-up for one year (P = 0.037). Conclusions: Hospitalized patients with HF had multi-dimensional symptom burdens in moderate levels. PCN was not related to HF severity but correlated to duration of heart failure, eGFR, and usage of intravenous medication. Having PCN was independently associated with mortality after discharge.

Validation of the Integrated Palliative Care Outcome Scale (IPOS) in adults with cystic fibrosis.

A primary palliative care model for cystic fibrosis (CF) recommends using the Integrated Palliative Care Outcome Scale (IPOS) for screening. Validation of the IPOS is needed. This secondary analysis utilized baseline data from a multisite trial of the palliative care model, Improving Life with CF. Adults with CF completed the IPOS, the Memorial Symptom Assessment Scale-CF (MSAS-CF), the CF Questionnaire-Revised (CFQ-R), the Patient Health Questionnaire (PHQ-8), the Generalized Anxiety Disorder (GAD-7), and the Perceived Stress Scale (PSS). IPOS structure was assessed using Cronbach α coefficients and a factor analysis. Construct validity was evaluated through bivariate relationships between IPOS scores and other questionnaire scores, and linear regressions assessing the extent to which the IPOS explains variance in quality-of-life domains. The sample comprised 256 adults with complete IPOS data. α coefficients were .86 for the IPOS total score, .81 for the Physical Symptoms subscale, .79 for the Emotional Symptoms subscale, and .63 for the Communication/Practical Issues subscale. A two-component factor structure best aligned with the current subscales. IPOS scores were significantly associated with other measures; associations with MSAS-CF and CFQ-R subscales differentiated the IPOS Physical and Emotional subscales. The IPOS total score provided unique information about the variance in the CFQ-R Physical Functioning and Respiratory Symptoms domain scores. In adults with CF, the IPOS has acceptable internal consistency and there is evidence of construct validity. These findings support adoption of the IPOS in the primary palliative care model for CF.

Person Profile Dementia Intervention in Long-Term Care: A Stepped-Wedge Cluster-Randomized Trial

ObjectivesWe aimed to assess the efficacy of a person-centered care intervention in improving quality of life (QoL) for people with dementia in long-term care facilities. DesignThis study was a stepped-wedge cluster-randomized clinical trial of monthly person-centered outcome measurements, followed by collaborative nurse-led person profile interventions involving nursing staff and family members, compared with monthly person-centered outcome measurements alone. Setting and ParticipantsWe included people with a medical diagnosis of Alzheimer's disease or vascular dementia or with clinical symptoms of dementia from 23 long-term care facilities in the German-speaking part of Switzerland. MethodsThe primary outcome was QoL, as assessed using the QUALIDEM. Secondary outcomes were the QUALIDEM subscales and the Integrated Palliative Care Outcome Scale for People with Dementia subscales. The study duration was 15 months, and linear mixed-effect models were used for the analysis. ResultsWe recruited 240 people with dementia from 23 long-term care facilities. Modeling 1143 observations, we found a statistically significant positive intervention effect of 2.6 points according to the QUALIDEM (95% CI, 1.34–3.86; P < .001; total QUALIDEM intervention: 67; 95% CI, 64.8–69.1 vs 64.4; 95% CI, 62.3–66.4 for the control). We also found positive effects of the intervention on all secondary outcomes. Conclusions and ImplicationsOnce-a-month person profile interventions based on person-centered outcome measurements provided a small but significant improvement in QoL. Thus, our findings suggest a potential benefit to the broader implementation of person profiles involving nursing staff and family members in long-term care facilities.

Enhancing palliative care for advanced cancer patients: evaluating implementation and impact of a virtual nurse-led symptom monitoring and telehealth initiative

BackgroundAs a result of the COVID-19 pandemic, we implemented a novel nurse-led symptom monitoring and virtual telehealth program for patients with advanced cancer on palliative care.AimsTo evaluate the reach, effectiveness, adoption, implementation, maintenance and acceptability of our program.MethodsThis was a prospective study carried out in a cohort of patients with advanced cancer over the period of 3rd June 2020 to 22nd October 2021. Demographic characteristics, cancer diagnosis, and functional status of patients were collected upon recruitment. Patients were asked to complete a patient-reported outcome measure (the Integrated Palliative Care Outcome Scale, IPOS) prior to the first palliative care consult and subsequently every week for the duration of their participation in the program (12 weeks). The IPOS measures the severity of physical symptoms, emotional concerns, information, and financial needs. Participants’ utilization of healthcare services by participants 3 months before, during and 3 months after the telemedicine program was reviewed. At the end of the program, a client satisfaction questionnaire (CSQ-4) to survey participants’ experience with the telehealth program and their willingness to pay for this program was administered.ResultsReach: The recruitment to adoption ratio of the program was 0.71. Acceptability:: Participants expressed satisfactory experience. Effectiveness: We noted that the severity of patients’ symptoms and number of emergency department visits decreased over time with nurse support. Adoption: we received referrals from 23 oncologists, yielding an adoption rate of 70%. Implementation: Of the 99 patients recruited for the program, 88.9% of them managed to complete their initial video consults as planned. 16% of them failed to complete the program due to factors such as patient demising. Maintenance: The declining rate of IPOS completion throughout the study period (98.9% at week 1 to 60.8% at week 12) demonstrated the difficulties in sustaining regular administration of self-reported patient outcome measures.ConclusionThe telemedicine program was effective and acceptable. We noted challenges in sustaining the administration of patient reported outcome measures over time. Further studies on how we can improve the sustainability of symptom monitoring in a telehealth program for patients with advanced illnesses, under palliative care, should be conducted.

The Palliative Care in Patients with Oncological Diseases - a New Medical and Therapeutic Approach

The life epectancy increase in patients with cancer requires more attention to the quality of life and mental health status of this population. The aim of the current research is to change the perspective on the evolution of oncological disorders, regardless of their localization, stage, or complications, in terms of survival chances, by eploring the essential role of psychiatric medication on the core physical and mental health-related outcomes. This is a prospective, naturalistic study, that enrolled 284 oncological patients, distributed in three groups, diagnosed with lung cancer, metastatic lung cancer or other types of cancer, who received psychotropic medication for their mood symptoms, and changes in the primary outcomes (i.e., patients’ mood and pain, and quality of the mental status of the caregivers) were monitored for si months. The results reflected the efficacy of psychopharmacological intervention initiated early after the diagnosis of cancer was formulated, according to the scores on the Integrated Palliative Care Outcome Scale (IPOS). The severity of pain, the intensity of depression, and aniety in family members decreased significantly during si months of the standard-of-care psychotropic medication administered for depressive disorders. In the long term, the objective is to change the oncological protocols to accommodate an early introduction of psychiatric medication in the evolution of oncological disease, even in the contet of moderate physical symptoms with uncertain etiology, which causes a deterioration in overall functionality and quality of life. A new notion, created by the first author, is supported by this research, i.e., “long-term oncological survivorship care,” which will replace the former concept of palliative care, which refers to “end-of-life care,” or “comfort care,” in relation to the oncological contet.

Feasibility of Weekly Integrated Palliative Care Outcome Scale (IPOS) Within a Stepped Care Model

ContextPatients with advanced cancer may experience symptoms and concerns that are inadequately identified by the healthcare team, leading to calls for patient-reported symptom monitoring. ObjectivesAssess the feasibility of administering weekly patient-reported online Integrated Palliative care Outcome Scale (IPOS) questionnaires within the context of a stepped care model in the outpatient care setting. MethodsAnalysis of intervention group data in a randomized controlled trial to assess the effectiveness of a stepped care model of palliative care for patients with advanced cancer. Patients in the intervention group were invited to complete the IPOS weekly for 16 weeks through a remotely-administered online questionnaire. At the end of the 16-week period, patients were invited to complete a feedback survey. Multivariable logistic regression was used to assess factors associated with more versus less than 70% completion of weekly questionnaires. ResultsAmong 111 patients who survived more than 16 weeks, the mean number of questionnaires completed was 9.2/16 (58%). A total of 53 out of the 111 patients (48%) completed more than 70% of the questionnaires. Higher education level was found to be associated with higher completion of the questionnaires. A total of 79 out of 111 (71%) patients responded to the feedback survey, of which 67 (85%) felt comfortable with completing the online questionnaire and 11 (14%) felt it was troublesome to complete it on a weekly basis. ConclusionIn our study, there was suboptimal completion of patient-reported IPOS questionnaire. Further research is needed to improve the uptake of patient-reported outcomes in real-world clinical settings.

Comparative analysis of symptom burdens and influential factors among diverse terminally-ill patients.

The suffering experienced by terminally-ill patients encompasses physiological, psychosocial and spiritual dimensions. While previous studies have investigated symptom burden intensity for specific disease groups, such as cancer or heart failure patients, a research gap exists in understanding major distressing symptoms among diverse terminally-ill patients. This study assessed symptom burden intensity and explored its influential factors among diverse patient disease groups. This cross-sectional study utilized the baseline Integrated Palliative care Outcome Scale (IPOS) assessment data. The study participants were terminally-ill patients enrolled in an end-of-life care (EoLC) intervention in Hong Kong. Statistical methods including relative importance index (RII), one-way analysis of variance (ANOVA), and generalized linear regression (GLR) were employed. Final sample consisted of 1,549 terminally-ill patients (mean age =77.4 years, SD =11.6). The five top-rated distressing symptoms among these patients, revealed by the RII analysis, were poor mobility (RII =64.4%), family anxiety (RII =63.5%), sharing feelings with family/friends (RII =61.4%), weakness/lack of energy (RII =58.1%), and hardly feeling at peace (RII =50.7%). One-way ANOVA showed significant differences among the eight disease groups in perceived physical and emotional symptom burden intensity (P<0.05). Analysis of RII symptom scores for each disease group revealed that poor mobility was rated as the most distressing symptom (RII =85.1-62.9%) by patients with motor neurone disease, Parkinson's disease, heart failure, dementia, end-stage renal disease and other serious diseases (including stroke, hematological disease, multiple sclerosis and liver diseases). Perceived family anxiety (RII =66.1%) and shortness of breath (RII =63.8%) were the most distressing symptoms for cancer patients and those with chronic obstructive pulmonary disease, respectively. GLR analysis showed that illness type is the most significant factor influencing the perceived burden intensity in terms of the IPOS total and subscale scores of physical symptoms, emotional symptoms and communication/practical issues. Demographic characteristics such as age, gender, marital status and co-residing status were also identified as influential factors of various symptom categories. However, patients' educational level and relationship with primary caregiver did not significantly influence any perceived symptom burden. This study provides valuable insights into the symptom burdens experienced by diverse patient disease groups at end-stage of life. The findings highlight the major distressing symptoms of poor mobility, family anxiety, and shortness of breath. Addressing these symptoms is crucial in improving the quality of care for terminally-ill patients. Furthermore, the study identifies influential factors that can affect the perceived intensity of symptom burden, primarily the main type of terminal illness and patient's age. Tailored care support and improved clinical care should be implemented, particularly for high-risk groups such as patients with non-cancer terminal illnesses and older aged patients. These findings contribute to existing literature and emphasize the need for comprehensive and individualized care in EoLC.

The Association of Unmet Palliative Care Needs and Physical Frailty With Clinical Outcomes: A Prospective Study of Adults With Heart Failure.

People with heart failure, particularly those who are physically frail, experience complex needs that can be addressed by palliative care (PC). However, we have a limited understanding of how the intersection of unmet PC needs and physical frailty contributes to health-related quality of life (HRQOL) and risk for hospitalization or mortality. In this study, we sought to examine the association of unmet PC needs and physical frailty with clinical outcomes (baseline HRQOL and hospitalizations or mortality at 6 months). We recruited a convenience sample of community-dwelling persons with heart failure from an urban hospital system who were older than 50 years and hospitalized in the last year. We measured physical frailty using the FRAIL scale (nonfrail, 0-2; frail, 3-5), PC needs using the Integrated Palliative Outcome Scale (range, 0-58; higher scores indicating higher needs), and HRQOL using the Kansas City Cardiomyopathy Questionnaire (range, 0-100; higher scores indicate higher HRQOL). We performed multivariable linear regression to test the relationships between physical frailty, PC needs, and HRQOL, and multivariable logistic regression for associations with all-cause 6-month hospitalization or mortality. We also performed an exploratory analysis of 4 PC needs/frailty groups (high PC needs/frail, high PC needs/nonfrail, low PC needs/frail, low PC needs/nonfrail) with outcomes. In our overall sample (n = 298), mean (SD) age was 68 (9.8) years, 37% were women (n = 108), 28% identified as Black/African American (n = 84), and 65% had heart failure with preserved ejection fraction (n = 194). Mean PC needs score was 19.7, and frail participants (n = 130, 44%) had a significantly higher mean PC needs score than nonfrail participants (P < .001). Those with higher PC needs (Integrated Palliative Care Outcome Scale ≥ 20) had significantly worse HRQOL (P < .001) and increased odds of hospitalization or mortality (odds ratio, 2.5; P < .01) compared with those with lower PC needs, adjusting for covariates. Physically frail participants had significantly worse HRQOL (P < .001) and higher odds of hospitalization or mortality at 6 months (odds ratio, 2.6; P < .01) than nonfrail participants, adjusting for covariates. In an exploratory analysis, physically frail participants with high PC needs had the lowest HRQOL score, with an average score of 28.6 points lower (P < .001) and 4.6 times higher odds of hospitalization or mortality (95% confidence interval, 2.03-10.43; P < .001) than low-needs/nonfrail participants. Higher unmet PC needs and physical frailty, separately and in combination, were associated with lower HRQOL and higher odds of hospitalization or mortality. Self-reported PC needs and physical frailty assessment in clinical settings may improve identification of patients at the highest risk for poor HRQOL and hospitalization or mortality amenable to PC intervention.

The Palliative Care Needs of Patients with Multiple Sclerosis, Parkinson's Related Diseases, and Motor Neurone Disease: A Secondary Analysis of the OPTCARE Neuro Trial Data.

Background: Long-term neurological conditions include multiple sclerosis, Parkinson's-related diseases, and motor neurone disease. National and international guidelines recommend a palliative approach for advancing neurological disease, but there is little research describing and comparing the palliative care needs of these patients side by side. Objective: The aim of this study was to describe and compare the symptom burden and psychological distress of patients with multiple sclerosis, Parkinson's-related diseases, and motor neurone disease. Design: A cross-sectional secondary analysis of the OPTCARE Neuro trial data was performed. Setting/Subjects: Recruitment was from seven sites across the United Kingdom. Patients aged 18 years or older, severely affected by advanced stages of multiple sclerosis or Parkinson's-related diseases or any stage of motor neurone disease, with an unresolved symptom, and one other issue despite usual care were eligible. Measurements: Baseline demographics, Integrated Palliative care Outcome Scale (IPOS) Neuro, and Hospital Anxiety and Depression Scale (HADS) results were analyzed. Results: Data from 348 participants were analyzed. The mean IPOS Neuro-S24 score was 27, with no statistical difference found between groups (p = 0.341). The most common symptoms were poor mobility (68.5%), problems using legs (63%), and fatigue (34.8%). The HADS revealed that a quarter of participants met the criteria for a diagnosis of anxiety and depression. Conclusions: Multiple sclerosis, Parkinson's-related disease, and motor neurone disease patients who were eligible for the OPTCARE Neuro trial have unmet needs in the form of distressing physical and psychological symptoms. It is unclear how to address these needs. The answer likely lies in a collaborative approach between neurology, palliative care, psychology, and specialized allied health professionals. Future work should focus on investigating this.

Implementation of the e-IPOS in Home Palliative Cancer Care: A Quasiexperimental Pilot Study.

Electronic patient-reported outcome measures (e-PROMs) offer advantages in palliative cancer care, including rapid completion, improved data quality and direct storage, improving clinical decision-making. The electronic Integrated Palliative Care Outcome Scale (e-IPOS) in this context enables thorough self-assessment by patients, enhancing symptom management and self-reflection of their current situation. To evaluate the feasibility of implementing the e-IPOS in home palliative cancer care. The primary outcomes included the enrollment consent rate, study retention rate, e-IPOS completion rate and response completeness, and the number of clinical assessments and interventions performed during home visits. The secondary outcomes were the number of unscheduled visits and patients' perceived quality of life. A two-group quasiexperimental clinical pilot study. The control group received standard palliative care, the intervention group received standard care along with weekly e-IPOS completion during home visits. Both groups were enrolled for 4weeks. Adults with advanced cancer from the home palliative care unit of the Istituto Nazionale dei Tumori of Milan. Twenty-three patients were enrolled (74.19%), and 20 completed the study (drop-out: 13.04%). 82.5% of the expected e-IPOS responses were received, of which 96.9% were fully complete. In the intervention group, the Wilcoxon test showed an increase in identified needs and documented interventions (P < .05) and a decrease in unscheduled visits (P < .05). It is feasible to recruit people via home palliative care for an e-IPOS implementation study. Future fully powered studies should investigate the feasibility and assess patients' perceptions of its use to better understand its clinical benefits.

Telemedicine Plus Standard Care Versus Standard Care Only in Specialized Outpatient Palliative Care: A Randomized Controlled Noninferiority Trial.

Background: Patients suffering from incurable diseases are more likely to die in the hospital than at home. Specialized outpatient palliative care (PC) may be able to counteract this tendency. Similarly, potential benefits of telemedicine in health care were scientifically reported. The aim of this research was to compare patients receiving specialized outpatient PC plus telemedicine with those receiving standard specialized outpatient PC only. In this study, telemedicine is assumed to decrease the number of home visits and therefore should not be considered a mere add-on. Methods: This is a randomized controlled noninferiority trial. Recruitment lasted between January 2020 and October 2021. Quality of care was evaluated using the Integrated Palliative Care Outcome Scale (IPOS) at day 0, 7, and 14 after randomization. Change from day 0 to 7 was defined as the primary outcome (noninferiority margin = 4 points). This study was conducted in an urban setting in collaboration with a university hospital and a local specialized outpatient PC service. Results: A total of 196 patients were screened with 34 patients included (18 telemedicine/16 standard care). The mean change in the total score of the IPOS from day 0 to 7 amounted to -1.8 ± 3.9 (telemedicine) versus 1.2 ± 5.7 (standard care). The telemedicine group was statistically not relevantly inferior to the standard care group (t-test for noninferiority, p = 0.005). Conclusions: Although, due to COVID-19, the sample size remained rather small, our findings indicate that telemedical approaches offer a promising and equally effective option to provide specialized outpatient PC. Clinical Trial Registration Number: NCT06054048.

Feasibility and effectiveness of a two-tiered intervention involving training and a new consultation model for patients with palliative care needs in primary care: A before-after study.

Evidence suggests that involving General Practitioners in the care of patients with palliative care needs may improve patient outcomes. To evaluate whether a two-tiered intervention involving training in palliative care and a new consultation model in primary care for patients with palliative care needs is feasible and could reduce patients' symptom burden. Before-after study including an internal pilot. Nine general practitioners working in a health region in Portugal and 53 patients with palliative care needs from their patient lists were recruited. General Practitioners received training in palliative care and used a new primary palliative care consultation model, with medical consultations every 3 weeks for 12 weeks. The primary outcome was physical symptom burden, self-reported using the Integrated Palliative care Outcome Scale (IPOS) patient version (min.0-max.1000). Secondary outcomes included emotional symptoms (min.0-max.400) and communication/practical issues (min.0-max.300). Of the 35/53 patients completed the 12-week intervention (mean age 72.53 years, SD = 13.45; 54.7% female). All had advanced disease: one third had cancer (n = 13), one third had congestive heart failure (n = 12); others had chronic kidney disease and chronic obstructive pulmonary disease. After the 12 weeks of intervention, there was a reduction in physical symptom burden [mean difference from baseline of 71.42 (95%CI 37.01-105.85) with a medium-large effect size (0.71], and in emotional symptom burden [mean difference 42.86 (95%CI 16.14-69.58), with a medium effect size (0.55)]. No difference was found for communication/practical issues. Our intervention can be effective in reducing patients' physical and emotional symptoms. ClinicalTrials.gov ID - NCT05244590. Registration: 14th February 2022.

Palliative care needs and barriers in an urban Ugandan Emergency Department: A mixed-methods survey of emergency healthcare workers and patients

BackgroundPalliative Care offers patient-centered, symptom-focused relief for patients with incurable disease, and early integration of palliative care ensures quality of life and death while reducing medical impoverishment. The Emergency Department is an ideal yet understudied, under-utilized location to initiate palliative care. ObjectiveTo evaluate the palliative care needs of patients with incurable disease and perceived barriers amongst healthcare providers in the Emergency Department of Kiruddu National Referral Hospital, Kampala, Uganda. MethodsA mixed methods survey of Emergency Department healthcare workers and patients was conducted. A crosse sectional survey of ninety-nine patients was conducted using the integrated Palliative Care Outcome Scale (IPOS). Eleven interviews were conducted with healthcare workers at Kiruddu Hospital, identified by purposive sampling. Descriptive and inferential statistics were used to analyze quantitative data.. Grounded theory approach was used to construct the in depth interview questions, code and analyze qualitative results and collapse these results into final themes. ResultsThe most common diagnoses were HIV/HIV-TB (32 %), heart disease (18 %), and sickle cell disease (14 %). The prevalence of unmet palliative care needs was substantial: more that 70 % of patients reported untreated symptoms e.g., pain, fatigue, difficulty breathing. Seventy-seven percent of the population reported severe or overwhelming pain. The main barriers to provision of palliative care in the Emergency Department as identified by healthcare workers were: (1) lack of adequate training in palliative care; (2) Challenges due to patient volume and understaffing; (3) the misconception that palliative care is associated with pain management alone; (4) Financial constraints as the greatest challenge faced by patients with incurable disease. ConclusionsWe report a high prevalence of unmet palliative care needs among patients in this urban Ugandan Emergency Department, and important barriers reported by emergency healthcare providers. Identification of these barriers offers opportunities to overcome them including harnessing novel mHealth interventions such as clinical support apps or telehealth palliative care consultants. Integration of palliative care in this setting would improve the care of vulnerable patients, provide healthcare workers with an additional care modality while likely adding value to the health system.

Palliative care needs among outpatient adults with cystic fibrosis: Baseline data from the Improving Life with CF trial

BackgroundLittle is known about the burden of illness experienced by people with cystic fibrosis (pwCF) since the advent of CF transmembrane conductance regulator (CFTR) modulator therapies. Studies that characterize the nature of illness burden are needed to inform the development and implementation of palliative care programs that can serve this population and address quality of life concerns. MethodsAdults with CF treated at five U.S. CF centers were surveyed to obtain baseline data for the Improving Life with CF primary palliative care implementation trial. Consenting patients completed the Integrated Palliative Care Outcome Scale (IPOS), a multidimensional measure of unmet needs for palliative care. Sociodemographic and clinical information was also obtained. The associations among these variables were examined through bivariate and multivariable analyses. ResultsAmong 256 adults, the most distressing symptoms included not feeling “at peace”, communication difficulties with family/friends, anxiety over illness or its treatment, and a lack of energy. In the multivariable analyses, CFTR modulator use was associated with lower IPOS total and physical symptoms scores; female sex and increased hospitalizations were associated with higher scores. Increased age and history of distal intestinal obstructive syndrome were associated with higher IPOS physical symptoms scores. ConclusionsThese findings illuminate the nature of illness burden for pwCF in the era of CFTR modulator therapies. Although illness burden is positively affected by modulator therapy, there is a continuing need for palliative care to address physical, emotional, and spiritual distress, and the communication and practical needs experienced by adults with CF.

Translation and cultural adaptation of the Greek integrated palliative care outcome scale (IPOS): challenges in a six-phase process

AimTo translate and culturally adapt IPOS to the Greek population.MethodsA four phases- sequential study, which included verification of conceptual equivalence, double forward- backward translations and conceptual cognitive debriefing. Focus group interviews used ‘think aloud’ and ‘verbal probing’ techniques. Interviews were audio-recorded, transcribed verbatim and thematically analyzed using predefined categories. Purposely sampled from two oncology and palliative care units in Athens.ResultsThe Integrated Palliative Care Outcome Scale was well accepted by both patients and health professionals. Overall comprehension and acceptability of the scale were good. The comprehension and judgement challenges identified in the pre-final version were successfully resolved in the cognitive interviewing phase. Five out of the seventeen translated items of the scale were modified after cognitive debriefing. Comprehension difficulties were identified with specific terms (e.g., energy/feeling depressed) and with some answer options. Severity of symptoms and not their impact was a common difficulty. A judgement challenge was reported in relation to 7-days recall and fluctuation of symptoms. Layout concerns in relation to length of questions were also stated. All questions were considered important and none as inappropriate.ConclusionThis study demonstrated face and content validity and acceptability of the Integrated Palliative Care Outcome Scale in the Greek context. Cognitive Interviewing proved valuable in refining concepts within the specific cultural context.Clinical implicationsThe IPOS outcome measure tool is now being used routinely in a palliative care service in Athens and is currently used to evaluate service outcomes.

Nurses' experiences of using the Integrated Palliative care Outcome Scale with patients in specialized palliative care-A qualitative focus group study.

To explore nurses' experiences of using the Integrated Palliative care Outcome Scale (IPOS) as a communication tool in specialized palliative care. This study employed a qualitative inductive approach. The Standards for Reporting Qualitative Research were followed for reporting. Five focus groups were conducted with nurses from four specialized palliative care units, and the discussions were analysed with quality content analysis. Using IPOS for communication with the patient gave an opportunity to understand the patient's care needs and to let these care needs guide care interventions. Prerequisites in terms of relation, atmosphere, skills and flexibility were needed to establish an interactive communication. It was challenging to communicate about issues that evoked emotional reactions in the patient. There was a balancing act between the use of a structured scale and overcoming communication challenges. Nonetheless, when the two complemented each other, IPOS was a useful tool for nurses to promote person-centred care.

Inter-rating reliability of the Swiss easy-read integrated palliative care outcome scale for people with dementia.

The Integrated Palliative Care Outcome Scale for People with Dementia is a promising instrument for nursing home quality improvement and research in dementia care. It enables frontline staff in nursing homes to understand and rate the needs and concerns of people with dementia. We recently adapted the measure to include easy language for users from various educational backgrounds. In this study, we examine the inter-rating reliability of the Integrated Palliative Care Outcome Scale for People with Dementia for frontline staff in nursing homes. In this secondary analysis of an experimental study, 317 frontline staff members in 23 Swiss nursing homes assessed 240 people with dementia from a convenience sample. Reliability for individual items was computed using Fleiss Kappa. Because of the nested nature of the primary data, a generalisability and dependability study was performed for an experimental IPOS-Dem sum score. The individual Integrated Palliative Care Outcome Scale for People with Dementia items showed kappa values between .38 (95% CI .3-.48) and .15 (95% CI .08-.22). For the experimental IPOS-Dem sum score, a dependability index of .57 was found. The different ratings and time between ratings explain less than 2% of the variance in the sum score. The different nursing homes make up 12% and the people with dementia make up 43% of the sum score variance. The dependability study indicates that an experimental IPOS-Dem sum score could be acceptable for research by averaging two ratings. Limited research has been conducted on the measurement error and reliability of patient-centred outcome measures for people with dementia who are living in nursing homes. The Swiss Easy-Read IPOS-Dem is a promising instrument but requires further improvement to be reliable for research or decision making. Future studies may look at its measurement properties for different rater populations or at different stages of dementia. Furthermore, there is a need to establish the construct validity and internal consistency of the easy-read IPOS-Dem.

Psychological symptom burden associated with malignant wounds: Secondary analysis of a prospective cohort study.

Patients with malignant wounds suffer from physical and psychological symptom burden. Despite psychological support being required, the impact of malignant wounds on patients' psychological distress is poorly investigated. We evaluated psychological distress associated with malignant wounds for patients at their end of life. This study used the secondary analysis of the results of a large prospective cohort study, which investigated the dying process among patients with advanced cancer in 23 palliative care units in Japan. The primary outcome of this study was the prevalence of moderate to severe psychological symptom burden, evaluated by the Integrated Palliative Care Outcome Scale (IPOS)-feeling at peace scores of 2-4. In addition, the factors affecting psychological symptoms were investigated. The quality of death was also evaluated upon death using the Good Death Scale score. Out of the total 1896 patients, 156 had malignant wounds (8.2%). Malignant wounds were more common in female and young people. The breast, head, and neck were the most prevalent primary sites. More patients with malignant wounds had IPOS-feeling at peace scores of 2-4 than patients without malignant wounds (41.0% vs. 31.3%, p=0.024). Furthermore, psychological distress was associated with moderate to severe IPOS-pain and the frequency of dressing changes. The presence of malignant wounds did not affect the quality of death. This study showed increased psychological distress due to malignant wounds. Patients with malignant wounds require psychological support in addition to the treatment of physical symptoms for maintaining their quality of life.

Kidney Supportive Care for Working-Age Adults with Chronic Kidney Disease: A Profile of Characteristics and Symptom Burden.

Chronic kidney disease (CKD) affects people across their lifespan. Kidney supportive care (KSC) is typically offered for older people for symptom management, education, and/or advance care planning (ACP). However, younger people may also benefit from KSC. This study sought to explore characteristics of working-age adults with CKD accessing KSC. Using a cross-sectional design, working-age adults (18-64 years) with CKD referred to a KSC service from February 2016 to July 2021 were included. Demographic and clinical data were extracted from patients' hospital records. Self-reported symptoms (Integrated Palliative Care Outcome Scale renal [IPOS-renal]) and health-related quality of life (European quality of life [EQ-5D-5L]) were assessed. Reasons for referral to KSC, kidney replacement therapy (KRT) pathway at referral, and comorbidity calculated using the Charlson Comorbidity Index were also assessed. One Hundred Fifty-six working-age adults attended the KSC service. Median age was 57 years, with more than half receiving KRT. Weakness (92.2%), poor mobility (83.3%), and pain (82.5%) were the most prevalent and severe symptoms. The majority were referred for symptom management (n = 83, 53.2%) and 27% for ACP (n = 42). The ACP completion rate was low (28.9%). Those on dialysis had significantly higher symptom scores than those not receiving dialysis (p &lt; 0.05). Working-age adults with CKD experience a significant and debilitating symptom burden and need to consider options for treatment. This study provides new understanding about working-age adults with CKD that may help provide the specific support needed to meet their end-of-life care needs.