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1.
Palliat Support Care ; 22(2): 396-403, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-37525610

RESUMO

OBJECTIVES: 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. METHODS: 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. RESULTS: 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. SIGNIFICANCE OF RESULTS: 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.


Assuntos
Qualidade de Vida , Carga de Sintomas , Humanos , Feminino , Adolescente , Estudos Prospectivos , Cuidados Paliativos , Dor
2.
Health Qual Life Outcomes ; 21(1): 29, 2023 Mar 24.
Artigo em Inglês | MEDLINE | ID: mdl-36964550

RESUMO

BACKGROUND: Patient-centred measures to capture symptoms and concerns have rarely been reported in severe COVID. We adapted and tested the measurement properties of the proxy version of the Integrated Palliative care Outcome Scale-IPOS-COV for severe COVID using psychometric approach. METHODS: We consulted experts and followed consensus-based standards for the selection of health status measurement instruments and United States Food and Drug Administration guidance for adaptation and analysis. Exploratory Factor Analysis and clinical perspective informed subscales. We tested the internal consistency reliability, calculated item total correlations, examined re-test reliability in stable patients, and also evaluated inter-rater reproducibility. We examined convergent and divergent validity of IPOS-COV with the Australia-modified Karnofsky Performance Scale and evaluated known-groups validity. Ability to detect change was examined. RESULTS: In the adaptation phase, 6 new items were added, 7 items were removed from the original measure. The recall period was revised to be the last 12-24 h to capture fast deterioration in COVID. General format and response options of the original Integrated Palliative care Outcome Scale were preserved. Data from 572 patients with COVID from across England and Wales seen by palliative care services were included. Four subscales were supported by the 4-factor solution explaining 53.5% of total variance. Breathlessness-Agitation and Gastro-intestinal subscales demonstrated good reliability with high to moderate (a = 0.70 and a = 0.67) internal consistency, and item-total correlations (0.62-0.21). All except the Flu subscale discriminated well between patients with differing disease severity. Inter-rater reliability was fair with ICC of 0.40 (0.3-0.5, 95% CI, n = 324). Correlations between the subscales and AKPS as predicted were weak (r = 0.13-0.26) but significant (p < 0.01). Breathlessness-Agitation and Drowsiness-Delirium subscales demonstrated good divergent validity. Patients with low oxygen saturation had higher mean Breathlessness-Agitation scores (M = 5.3) than those with normal levels (M = 3.4), t = 6.4 (186), p < 0.001. Change in Drowsiness-Delirium subscale correctly classified patients who died. CONCLUSIONS: IPOS-COV is the first patient-centred measure adapted for severe COVID to support timely management. Future studies could further evaluate its responsiveness and clinical utility with clinimetric approaches.


Assuntos
COVID-19 , Delírio , Humanos , Reprodutibilidade dos Testes , Qualidade de Vida , Cuidados Paliativos , Psicometria , Inquéritos e Questionários
3.
Palliat Med ; 37(5): 760-770, 2023 05.
Artigo em Inglês | MEDLINE | ID: mdl-36856258

RESUMO

BACKGROUND: The Integrated Palliative Care Outcome Scale (IPOS) validly and reliably measures symptoms and concerns of those receiving palliative care. AIM: To determine the equivalence of the paper version with an electronic version of the IPOS (eIPOS). DESIGN: Multicentre randomised crossover trial (NCT03879668) with a within-subject comparison of the two modes (washout period 30 min). SETTING/PARTICIPANTS: Convenience sample of specialist inpatient and palliative home care patients aged over 18 years with cancer and non-cancer conditions was recruited. Scores were compared using intraclass correlation coefficients (ICC), Bland-Altman plots and via a mixed-effects analysis of variance. RESULTS: Fifty patients were randomised to complete paper-electronic (n = 24) and electronic-paper (n = 26) IPOS with median age 69 years (range 24-95), 56% male, 16% non-cancer. The ICCs showed very high concordance for the total score (ICC 0.99, 95% CI 0.98-1.00), lowest ICCs being observed for symptoms 'Appetite loss' and 'Drowsiness' (ICC 0.95, 95% CI 0.92-0.97). Nine of seventeen items had ICCs above 0.98, as did all subscales. No statistically significant mode, order, age, and interaction effects were observed for IPOS total score and subscales, except for 'Communication' (Fmode = 5.9, p = 0.019). Fifty-eight percent preferred the electronic version. In the group 75+ years, 53% preferred the paper version. Only three entries in the free-text main problems differed between the versions. CONCLUSION: The very high equivalence in scores and free text between the IPOS and the eIPOS demonstrates that eIPOS is feasible and reliable in an older palliative population.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Humanos , Masculino , Adulto , Pessoa de Meia-Idade , Adulto Jovem , Idoso , Idoso de 80 Anos ou mais , Feminino , Estudos Cross-Over , Reprodutibilidade dos Testes , Qualidade de Vida , Inquéritos e Questionários
4.
Palliat Support Care ; 19(6): 702-708, 2021 12.
Artigo em Inglês | MEDLINE | ID: mdl-33666153

RESUMO

OBJECTIVES: The goal of palliative and supportive care is to improve patients' quality of life (QoL). Patient-reported outcome measures (PROMs) are the gold standard for the assessment of QoL and symptoms; however, when self-reporting is complicated, PROMs are often substituted with proxy-reported outcome measures, such as clinician-reported outcome measures. The objective of this study was to assess the validity and reliability of the Japanese version of the Integrated Palliative care Outcome Scale (IPOS) for staff (IPOS-Staff). METHODS: This multicenter, cross-sectional observational study was conducted concurrently with the validation of the IPOS for patients (IPOS-Patient). Japanese adult patients with cancer and their staff were recruited. We assessed the characteristics of the patients and staff members, missing values, prevalence, and total IPOS scores. For the analysis of criterion validity, intra-rater, and inter-rater reliability, we calculated intraclass correlations (ICCs). RESULTS: One hundred and forty-three patients completed the IPOS-Patient, and 79 medical staff members completed the IPOS-Staff. The most common missing values from IPOS-Staff were Family Anxiety (3.5%) and Sharing Feelings (3.5%). Over half of the patients scored themselves moderate or worse for Poor Mobility, Anxiety, and Family Anxiety, while staff members scored patients moderate or worse for Weakness, Anxiety, and Family Anxiety. For criterion validity (patient-staff agreement) as well as intra-rater and inter-rater reliability, ICCs ranged from 0.114 (Sharing Feelings) to 0.826 (Nausea), 0.720 (Anxiety) to 0.933 (Nausea), and -0.038 (Practical Problems) to 0.830 (Nausea), respectively. SIGNIFICANCE OF RESULTS: The IPOS-Staff is easy to respond to; it has fair validity and reliability for physical items but poor for psycho-social items. By defining the context and objectives of its use and interpretation, the IPOS-Staff can be a useful tool for measuring outcomes in adult patients with cancer who cannot complete self-evaluations.


Assuntos
Neoplasias , Cuidados Paliativos , Adulto , Humanos , Qualidade de Vida , Reprodutibilidade dos Testes , Estudos Transversais , População do Leste Asiático , Psicometria , Neoplasias/complicações , Neoplasias/terapia , Medidas de Resultados Relatados pelo Paciente
5.
Jpn J Clin Oncol ; 49(3): 257-262, 2019 Mar 01.
Artigo em Inglês | MEDLINE | ID: mdl-30668720

RESUMO

BACKGROUND: To improve palliative care practice, the need for patients-reported outcome measures is increasing globally. The Integrated Palliative care Outcome Scale (IPOS) is a streamlined outcome scale developed to comprehensively evaluate patients' distress. The goal of this study is to assess the reliability and validity of IPOS-Japanese version in cancer patients. METHODS: This is a multicenter, cross-sectional observational study. We assessed the missing values, prevalence, test-retest reliability, criterion validity and known-group validity in Japanese adult cancer patients. Patients provided responses to IPOS, European Organization for Research and Treatment for Cancer Quality of Life Questionnaire-Core 30 (EORTC QLQ-C30), and Functional Assessment of Chronic Illness Therapy- Spiritual 12 (FACIT-Sp12). Our medical staff provided responses to Support Team Assessment Schedule (STAS). RESULTS: One hundred forty-two patients were enrolled at six palliative care facilities. Missing values accounted for less than 1% of most items, with a maximum of 2.8%. The prevalence of symptoms was 17.7-88.7%. The intra-class correlation coefficient ranged from 0.522 to 0.951. The range of correlation coefficients with EORTC-QLQ-C30, FACIT-Sp12 and STAS as gold standards was 0.013 to 0.864 (absolute values). Total IPOS scores were positively correlated with Eastern Corporative Oncology Group Performance Status (P < 0.001). CONCLUSION: IPOS-Japanese version is a valid and reliable tool. The scale is useful in assessing physical, psychological, social and spiritual symptoms and in measuring outcomes of adult cancer patients in Japan.


Assuntos
Neoplasias/psicologia , Avaliação de Resultados em Cuidados de Saúde , Cuidados Paliativos , Psicometria/métodos , Qualidade de Vida , Idoso , Estudos Transversais , Feminino , Humanos , Japão , Masculino , Pessoa de Meia-Idade , Neoplasias/terapia , Reprodutibilidade dos Testes , Inquéritos e Questionários
6.
Palliat Support Care ; 16(6): 698-705, 2018 12.
Artigo em Inglês | MEDLINE | ID: mdl-29352836

RESUMO

OBJECTIVE: Although hospitals have been described as inadequate place for end-of-life care, many deaths still occur in hospital settings. Although patient-reported outcome measures have shown positive effects for patients in need of palliative care, little is known about how to implement them. We aimed to explore the feasibility of a pilot version of an implementation strategy for the Integrated Palliative care Outcome Scale (IPOS) in acute care settings. METHOD: A strategy, including information, training, and facilitation to support the use of IPOS, was developed and carried out at three acute care units. For an even broader understanding of the strategy, it was also tested at a palliative care unit. A process evaluation was conducted including collecting quantitative data and performing interviews with healthcare professionals.ResultFactors related to the design and performance of the strategy and the context contributed to the results. The prevalence of completed IPOS in the patient's records varied from 6% to 44% in the acute care settings. At the palliative care unit, the prevalence in the inpatient unit was 53% and the specialized home care team 35%. The qualitative results showed opposing perspectives concerning the training provided: Related to everyday work at the acute care units and Nothing in it for us at the palliative care unit. In the acute care settings, A need for an improved culture regarding palliative care was identified. A context characterized by A constantly increasing workload, a feeling of Constantly on-going changes, and a feeling of Change fatigue were found at all units. Furthermore, the internal facilitators and the nurse managers' involvement in the implementation differed between the units.Significance of the resultsThe feasibility of the strategy in our study is considered to be questionable and the components need to be further explored to enhance the impact of the strategy and thereby improve the use of IPOS.


Assuntos
Cuidados Paliativos/normas , Resultado do Tratamento , Estudos de Viabilidade , Humanos , Entrevistas como Assunto/métodos , Cuidados Paliativos/métodos , Cuidados Paliativos/estatística & dados numéricos , Desenvolvimento de Programas/métodos , Pesquisa Qualitativa , Inquéritos e Questionários
7.
PEC Innov ; 4: 100264, 2024 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-38404931

RESUMO

Objective: Prospective cohort study to test the real-life feasibility of longitudinal patient-reported outcome measurement PROM (Integrated Palliative Outcome Scale IPOS, and NCCN Distress Thermometer DT) required for outpatients with non-curable lung or prostate cancer in comprehensive cancer centers. Methods: Assessment with paper-based IPOS and DT was observed for 15 months. We analyzed response to patients' distress (requests for supportive and palliative services) following PROM. Focus groups to comprehensively explore the user experience of patients, informal caregivers and health care professionals (HCP) supplemented the analysis. Results: Ninety-seven percent (125/129) of the patients received a questionnaire once, but quarterly assessment as recommended by certification committees was achieved only in 50% and 31% of prostate and lung cancer patients. Although both instruments were well accepted, only IPOS showed a high content validity, because some patients had difficulties in understanding the DT. Patients felt comfortable with completing the PROM, and HCP found PROM helped to structure the patient encounter. Due to organizational deficiencies in the handling of the instruments and operationalization of reactions to identified distress, the referrals to supportive and palliative services were rare. Conclusion: To facilitate consequences from PROM it should be a standardized intervention rather than assessment alone. Innovation: The patient perspective improves the implementation of PROM under real-life clinical conditions.

8.
Ann Palliat Med ; 13(3): 513-530, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38769801

RESUMO

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.


Assuntos
Doente Terminal , Humanos , Masculino , Feminino , Estudos Transversais , Idoso , Doente Terminal/psicologia , Pessoa de Meia-Idade , Idoso de 80 Anos ou mais , Hong Kong , Cuidados Paliativos/psicologia , Assistência Terminal/psicologia , Efeitos Psicossociais da Doença
9.
Palliat Care Soc Pract ; 17: 26323524231214814, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-38044934

RESUMO

Background: Screening patients with patient-reported outcome measures allows identification of palliative care concerns. The Integrated Palliative Care Outcome Scale (IPOS) was developed in the United Kingdom for this purpose. Tools developed in another setting might not be readily usable locally. We previously evaluated the validity and reliability of the IPOS in our cardiology setting. However, it remains uncertain what factors would influence the subsequent implementation of IPOS for routine screening of patients with advanced heart failure in future practice. Objectives: This study aimed to identify the factors that could affect the IPOS implementation for patients with advanced heart failure. Design: This was a qualitative study conducted at the National Heart Centre Singapore. Methods: Patients with advanced heart failure who participated in our previous IPOS validation study were purposively recruited for semi-structured interviews. Healthcare workers caring for these patients and involved in the testing of the IPOS tool were also invited for interviews. The interviews were analyzed thematically and mapped to the Consolidated Framework for Implementation Research (CFIR). Results: Our analysis identified six potential facilitators and six potential barriers to implementation across five major domains of the CFIR (intervention characteristics, inner setting, outer setting, individual characteristics, and process). Facilitators include: (i) perception of utility, (ii) perception of minimal complexity, (iii) perception of relatability, (iv) conducive culture, (v) dedicated resources, and (vi) advocates for implementation. Barriers include: (i) need for adaptation, (ii) mindsets/role strains, (iii) resource constraints, (iv) cultural concerns, (v) individual needs, and (vi) change process. Conclusion: Institutions could focus on cultivating appropriate perceptions and conducive cultures, providing dedicated resources for implementation and introducing facilitators to advocate for implementation. Adaptation of IPOS to suit workflows and individual needs, consideration of change processes, and systemic changes to alleviate cultural, resource, and staff role strains would improve IPOS uptake during actual implementation in clinical services. Trial registration: Not applicable.

10.
J Prim Care Community Health ; 14: 21501319231221431, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-38131120

RESUMO

INTRODUCTION/OBJECTIVES: There is growing consensus on the benefits of initiating palliative care early in the disease trajectory; however, palliative care needs for non-cancer patients remain to be elucidated. We investigated the trajectory of unresolved palliative care needs of non-cancer patients at home and explored associated factors. METHODS: We conducted a multicenter prospective cohort study of elderly non-cancer patients at home in Japan between Jan 2020 and Dec 2020. Physicians assessed their palliative care needs using the Integrated Palliative Care Outcome Scale (IPOS). Unresolved palliative care needs were defined as IPOS symptoms above 2 (moderate). RESULTS: In total, 785 patients were enrolled. The most frequent unresolved palliative care needs at enrollment were poor mobility (n = 438, 55.8%), followed by weakness/lack of energy (n = 181, 23.1%) and poor appetite (n = 160, 20.4%). Multivariate logistic regression analysis revealed that female and musculoskeletal disease were significantly positively associated with pain at starting home visits (OR = 1.89, P = .015; OR = 2.69, P = .005). In addition, neurological diseases were significantly positively associated with constipation and poor mobility 3 months after starting home visits (OR = 3.75, P = .047; OR = 3.04, P = .009). CONCLUSIONS: The order of the prevalence of unresolved palliative care needs may remain relatively stable over time, even for those receiving home-based palliative care services. We identified several specific diseases and conditions that were significantly associated with unresolved palliative care needs.


Assuntos
Neoplasias , Médicos , Humanos , Feminino , Idoso , Cuidados Paliativos , Estudos Prospectivos , Neoplasias/terapia , Neoplasias/diagnóstico , Prevalência
11.
Geriatr Gerontol Int ; 23(7): 517-523, 2023 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-37246235

RESUMO

AIM: This study assessed the validity and reliability of the Integrated Palliative Care Outcome Scale for non-cancer patients. METHODS: We recruited 223 non-cancer patients receiving palliative care and their healthcare providers (222) across two home care facilities and two hospitals for a cross-sectional study. We assessed the construct validity and known-group validity of the Integrated Palliative Care Outcome Scale. The weighted kappa and interclass correlation coefficients were assessed to ascertain reliability. RESULTS: The scale scores were significantly higher for the 'non-stable' group (worsening condition group) measured in the palliative care phase than for the 'stable' group (P < 0.001). Regarding validity, Spearman's correlations between similar items on the Integrated Palliative Care Outcome Scale and Edmonton Symptom Assessment System ranged from 0.61 to 0.94. Regarding reliability, the weighted kappa coefficients ranged from 0.53 to 0.81 for patients and from 0.58 to 0.90 for healthcare providers. For inter-rater reliability between patients and healthcare providers, the weighted kappa coefficients for each item ranged from 0.03 to 0.42. CONCLUSION: This study confirmed the validity and reliability of the Integrated Palliative Care Outcome Scale for non-cancer patients requiring palliative care. However, the inter-rater reliability indicates poor agreement between the assessments of patients and healthcare providers. This highlights the discrepancies between both their assessments and the importance of the patient's assessment. Geriatr Gerontol Int 2023; 23: 517-523.


Assuntos
Hospitais , Cuidados Paliativos , Humanos , Reprodutibilidade dos Testes , Estudos Transversais , Psicometria
12.
J Cyst Fibros ; 2023 Nov 09.
Artigo em Inglês | MEDLINE | ID: mdl-37951787

RESUMO

BACKGROUND: Little 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. METHODS: Adults 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. RESULTS: Among 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. CONCLUSIONS: These 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.

13.
ESC Heart Fail ; 9(3): 1963-1975, 2022 06.
Artigo em Inglês | MEDLINE | ID: mdl-35307988

RESUMO

AIMS: Patients with heart failure (HF) may have variable unrecognized symptom burdens. We sought to investigate the details, determinants, and prognostic significance of symptom burden in hospitalized patients with HF. METHODS AND RESULTS: We prospectively evaluated consecutive hospitalized patients with HF as primary diagnosis at our institution using the Integrated Palliative care Outcome Scale (IPOS) both on admission and at discharge. The IPOS, which is a well-validated multi-dimensional symptom assessment scale among advanced illness, consists of 17 questions for enquiring about physical symptoms (10 items), emotional symptoms (4 items) and communication and practical issues (3 items) using a 5-point Likert scale (0 [best]-4 [worst] points). Clinically relevant symptoms were defined as ≥2 points for each IPOS item. Worsening symptom burden was defined as the total IPOS score at discharge being poorer than that on admission. Of 294 patients (mean age: 77.5 ± 12.0 years, male: 168 patients, New York Heart Association class IV: 96 patients, mean left ventricular ejection fraction [LVEF]: 44%, and median N-terminal pro B-type natriuretic peptide [NT-proBNP] level: 4418 ng/L), the median (IQR) total IPOS score on admission was 19 (12, 27) and they were widely distributed (minimum: 0 - maximum: 52). The total IPOS score on admission was not correlated with the HF severity, including LVEF (Spearman's ρ = -0.05, P = 0.43), NT-proBNP levels (Spearman's ρ = 0.08, P = 0.20) or in-hospital mortality prediction model (GWTG-HF risk score) (Spearman's ρ = 0.01, P = 0.90). Total IPOS scores significantly decreased during hospitalization as a whole (median [IQR]: 13 [6, 21] at discharge; P < 0.001 vs. those on admission). All of the four emotional symptoms (patient anxiety, depression, family anxiety and feeling at peace) remained in the top 5 of clinically relevant symptoms at discharge, whereas none of 10 physical symptoms were nominated. Worsening symptom burden was noted in 28% of the patients during hospitalization, and was independently associated with higher all-cause mortality after discharge (hazard ratio: 2.28, 95% confidence interval: 1.02-5.09; P = 0.044) even after adjustment by age and HF mortality prediction model (MAGGIC risk score). CONCLUSIONS: We revealed that hospitalized patients with HF had multi-dimensional symptom burdens which varied among individuals and were not correlated with the disease severity. Emotional symptoms, such as anxiety and depression, were the main clinically relevant symptoms at discharge. A worsening IPOS score was noted in a quarter of patients with HF and was associated with a poor prognosis, suggesting the importance of holistic symptom assessment during the course of hospitalization for HF.


Assuntos
Insuficiência Cardíaca , Cuidados Paliativos , Idoso , Idoso de 80 Anos ou mais , Insuficiência Cardíaca/diagnóstico , Insuficiência Cardíaca/terapia , Humanos , Masculino , Volume Sistólico , Avaliação de Sintomas , Função Ventricular Esquerda
14.
Palliat Med Rep ; 3(1): 287-295, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36479550

RESUMO

Background: The Integrated Palliative Care Outcome Scale (IPOS) was developed in the United Kingdom for health assessment in advanced illness. Objectives: To evaluate the validity and reliability of a culturally adapted IPOS (both patient and staff versions) for heart failure (HF). Design/Setting: We recruited HF patients and staff from a tertiary hospital in Singapore. We collected patient IPOS, New York Heart Association (NYHA) status, Edmonton Symptom Assessment System (ESAS) and Minnesota Living with Heart Failure (MLHF) scores at baseline, and patient IPOS at follow-up. Each baseline patient IPOS was matched with a staff IPOS. Measurements: Pearson correlation coefficient (r) between ESAS, MLHF, and patient IPOS was calculated to assess construct validity. The two-sample T-test assessed difference in patient and staff IPOS scores across NYHA status and care settings for known-group validity. Internal consistency of patient and staff IPOS was assessed using Cronbach's alpha (α). Intraclass correlation coefficient (ICC) was used to assess test-retest reliability of patient IPOS and inter-rater reliability between patient and staff IPOS. Results: Ninety-one patients and 12 staff participated. There was strong convergent validity of total patient IPOS with MLHF (r = 0.78) and ESAS (r = 0.81). There were statistically significant differences in total IPOS across care settings (patient-IPOS: 8.05, staff-IPOS 13.61) and NYHA (patient-IPOS: 7.52, staff-IPOS 12.71).There was high internal consistency of total patient (α = 0.83) and staff IPOS (α = 0.88) and high test-retest reliability of patient IPOS (ICC 0.81). Inter-rater reliability (ICC) ranged between 0.82 and 0.91. Conclusion: The IPOS was valid and reliable for HF patients in Singapore.

15.
Curr Oncol ; 29(10): 7140-7147, 2022 09 28.
Artigo em Inglês | MEDLINE | ID: mdl-36290838

RESUMO

(1) Background: The importance of patient-reported outcome (PRO), i.e., prioritizing patient voice, has increased in cancer treatment, as well as palliative and supportive settings. The Integrated Palliative Care Outcome Scale (IPOS), a hybrid evaluation consisting of "patient evaluation" (PRO) and "peer evaluation" by medical professionals, was developed as a successor version of the Support Team Assessment Schedule (STAS) in 2013 and has been utilized worldwide. The Japanese version of the IPOS (IPOS-J) was developed and released in 2019. The purpose of this study was to explore the applicability of the IPOS-J to clinical practice in the future. (2) Methods: We conducted the following two studies with terminally ill cancer patients: (i) Can an evaluation with the IPOS-J performed by medical professionals (peer evaluation) replace the STAS-J evaluation? (ii) Can the quality of palliative care improve by combining the IPOS-J patient evaluation with the peer evaluation? (3) Results: The overall intervention rate and urgent intervention rate for the STAS-J and IPOS-J was 34.4 vs. 34.1% (p = 0.91) and 10.4 vs. 9.9% (p = 0.78), respectively. The patients selected "intervention required" but the medical professionals selected "no intervention required" in 47 cases. The medical team performed appropriate intervention after re-assessment. As a result, more than 70% of the patients were "intervention-free" after 1 week of intervention. (4) Conclusions: The IPOS-J peer evaluation was as useful as the STAS-J evaluation. A hybrid type of evaluation, combining patient evaluation (PRO) and peer evaluation, may help us to understand patient needs and improve the quality of palliative care.


Assuntos
Neoplasias , Cuidados Paliativos , Humanos , Medidas de Resultados Relatados pelo Paciente , Neoplasias/terapia , Avaliação de Resultados em Cuidados de Saúde
16.
J Pain Symptom Manage ; 64(4): 377-390, 2022 10.
Artigo em Inglês | MEDLINE | ID: mdl-35752399

RESUMO

CONTEXT: Evidence of symptom control outcomes in severe COVID is scant. OBJECTIVES: To determine changes in symptoms among people severely ill or dying with COVID supported by palliative care, and associations with treatments and survival. METHODS: Multicentre cohort study of people with COVID across England and Wales supported by palliative care services, during the pandemic in 2020 and 2021. We analysed clinical, demographic and survival data, symptom severity at baseline (referral to palliative care, first COVID assessment) and at three follow-up assessments using the Integrated Palliative care Outcome Scale - COVID version. RESULTS: We included 572 patients from 25 services, mostly hospital support teams; 496 (87%) were newly referred to palliative care with COVID, 75 (13%) were already supported by palliative care when they contracted COVID. At baseline, patients had a mean of 2.4 co-morbidities, mean age 77 years, a mean of five symptoms, and were often bedfast or semiconscious. The most prevalent symptoms were: breathlessness, weakness/lack of energy, drowsiness, anxiety, agitation, confusion/delirium, and pain. Median time in palliative care was 46 hours; 77% of patients died. During palliative care, breathlessness, agitation, anxiety, delirium, cough, fever, pain, sore/dry mouth and nausea improved; drowsiness became worse. Common treatments were low dose morphine and midazolam. Having moderate to severe breathlessness, agitation and multimorbidity were associated with shorter survival. CONCLUSION: Symptoms of COVID quickly improved during palliative care. Breathlessness, agitation and multimorbidity could be used as triggers for timelier referral, and symptom guidance for wider specialities should build on treatments identified in this study.


Assuntos
COVID-19 , Delírio , Idoso , COVID-19/terapia , Estudos de Coortes , Dispneia , Humanos , Midazolam , Morfina , Dor , Cuidados Paliativos
17.
Eur J Cardiovasc Nurs ; 19(8): 702-710, 2020 12.
Artigo em Inglês | MEDLINE | ID: mdl-32370552

RESUMO

AIM: The aim of this study was to evaluate the suitability and comprehensibility of the integrated palliative care outcome scale for the evaluation of palliative care needs in patients with heart failure. METHODS AND RESULTS: This cross-sectional study investigated 100 heart failure patients (40 women, 60 men; median age 79 years) within the first few days of their hospitalisation by applying the integrated palliative care outcome scale (3-day recall period) and two additional self-developed questions about the suitability and comprehensibility of the integrated palliative care outcome scale. Clinically relevant somatic and psycho-emotional symptoms were reported very frequently (approximately 75% each), followed by communicational needs or practical issues. Ninety-five per cent of patients thought the integrated palliative care outcome scale very easy to understand, and 91% judged the integrated palliative care outcome scale suitable to assess palliative care needs. CONCLUSION: The integrated palliative care outcome scale was well accepted by hospitalised patients with heart failure and identified a high burden of both physical and psycho-emotional symptoms. Screening for palliative care has to consider patients and their relatives alike, and should be part of a comprehensive care concept jointly integrated into clinical routine by primary and specialised palliative care teams.


Assuntos
Insuficiência Cardíaca/enfermagem , Enfermagem de Cuidados Paliativos na Terminalidade da Vida/estatística & dados numéricos , Enfermagem de Cuidados Paliativos na Terminalidade da Vida/normas , Pacientes Internados/estatística & dados numéricos , Avaliação das Necessidades/estatística & dados numéricos , Avaliação das Necessidades/normas , Cuidados Paliativos/estatística & dados numéricos , Cuidados Paliativos/normas , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Feminino , Humanos , Masculino , Guias de Prática Clínica como Assunto , Psicometria , Reprodutibilidade dos Testes
18.
J Pain Symptom Manage ; 57(2): 290-296, 2019 02.
Artigo em Inglês | MEDLINE | ID: mdl-30496788

RESUMO

CONTEXT: Accurate assessment of a patient's palliative care needs is essential for the timely provision of treatment and support. The Integrated Palliative Care Outcome Scale (IPOS) is an ordinal measure possessing acceptable psychometric properties, but its ability to discriminate precisely between individual symptom levels has not been rigorously investigated. OBJECTIVES: The study aimed to conduct Rasch analysis of the IPOS to evaluate and enhance precision of the instrument. METHODS: Responses of 300 community-dwelling palliative care patients were subjected to Rasch analysis using the partial credit model. RESULTS: Initial analysis supported the use of the Rasch model and acceptable reliability (person separation index = 0.77) was observed; however, unsatisfactory model fit was found. Local dependency between items was resolved through the creation of super-items, which increased model fit, reliability (person separation index = 0.80), and unidimensionality. There were no misfitting super-items or differential item functioning by age, rater, sex, or ethnicity. The IPOS showed satisfactory coverage of symptoms within the present clinical sample, with the ability to assess higher severity patients. CONCLUSION: The modified IPOS showed excellent reliability for a clinical measure in assessing the overall palliative care needs of a patient. The provided ordinal-to-interval conversion table accounts for unique contribution of each symptom to the overall symptom burden and easy to use without the need to modify the original IPOS format.


Assuntos
Avaliação das Necessidades/estatística & dados numéricos , Avaliação de Resultados em Cuidados de Saúde/métodos , Cuidados Paliativos/estatística & dados numéricos , Resultado do Tratamento , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Vida Independente , Masculino , Pessoa de Meia-Idade , Modelos Estatísticos , Avaliação de Resultados em Cuidados de Saúde/estatística & dados numéricos , Medição da Dor , Psicometria , Reprodutibilidade dos Testes , Inquéritos e Questionários
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