Indwelling Peritoneal Catheter for Ascites Management in a UK District General Hospital: A Cohort Study

Background: There is no national or local guidance for management of malignancy-related ascites (MRA). Modalities can include large volume paracentesis (LVP) and indwelling peritoneal catheter (IPeC) insertion. Objectives: We set up a local IPeC service and performed a retrospective review with local ethical (Caldicott) approval. We hypothesized that an IPeC service would reduce inpatient stay related to MRA management, would be acceptable to patients, and have minimal complications. Methods: Notes of all patients requiring IPeC insertion were reviewed. Descriptive statistical methodology was applied with continuous data presented as mean (standard deviation (SD); range) and categorical variables as frequencies or percentages. Integrated Palliative Care Outcome Scale (IPOS) scores were collected for IPeC patients. Results: Thirty-four patients were identified. They were predominantly female, with a mean age of 66.6 years and a wide range of cancer diagnoses. Twenty-nine were inserted as day case procedures, and 31 had preceding paracenteses (mean 2). Main complications were leakage (6(17%)), peritonitis (2(5.8%)), and skin infection (1(3%)). IPOS scores showed consistent improvement in symptoms. Conclusions: An IPeC service for malignant-related ascites is acceptable to patients and is associated with manageable complication rates. We present the development of our service and hope for widespread application.

Síntomas, comorbilidad y estado funcional de los pacientes con enfermedad renal crónica estadio 5 en manejo renal conservador

Objetivos: Determinar la prevalencia e intensidad de síntomas pacientes con Enfermedad Renal Crónica estadio 5 en manejo renal conservador y analizar su asociación con la comorbilidad y el estado funcional. Método: Estudio descriptivo, correlacional, de corte transversal. Para la evaluación de síntomas se utilizó la versión española modificada de la Palliative care Outcome Scale-Symptoms Renal. La comorbilidad fue evaluada con el índice de comorbilidad de Charlson modificado. Para la evaluación del estado funcional y grado de dependencia se utilizó el índice de Barthel. Resultados: 60 pacientes fueron incluidos en este estudio. Más del 50% de los pacientes presentaron debilidad, dolor, dificultad para dormir, poco apetito y problemas en la boca, encontrándose el dolor y la debilidad entre los síntomas más intensos. Las principales condiciones comórbidas fueron: diabetes, cardiopatía isquémica, enfermedad vascular periférica y neoplasias. La media del índice de Barthel fue 88±14,2. No se encontró asociación entre la comorbilidad y la sintomatología (p=0,43). El deterioro del estado funcional se asoció con la carga de síntomas (p=0.001).Conclusiones: Los pacientes con Enfermedad Renal Crónica estadio 5 en manejo renal conservador sufren una elevada carga de síntomas. La debilidad fue síntoma más frecuente en esta población. La carga sintomática se asoció con el deterioro del estado funcional. Futuros estudios sobre el impacto de los síntomas en estos pacientes, así como las intervenciones necesarias para su óptimo manejo deberían ser considerados. Objective: To determine the prevalence and severity of symptoms of patients with Chronic Kidney Disease Stage 5 managed conservately, and their association with the comorbidities and functional status. Methods: A cross-sectional, descriptive, and correlational design was used. Symptom data were collected using the Spanish modified version of Palliative care Outcome Scale-Symptoms Renal. Comorbidity was collected and scored according to the modified Charlson Comorbidity Index. For the evaluation of functional status, the Barthel index was used.Results: 60 patients were included in this study. More than 50% of patients described weakness, pain, difficulty for sleeping, poor appetite and mouth problems. Diabetes, coronary artery disease, and peripheral vascular disease, and tumor, were the main comorbid conditions of these patients. The mean score of Barthel index was 88±14.2. There was no significant correlation between comorbidities and symptoms (p=0.43). There was a significant correlation between symptoms and functional decline (p=0.001).Conclusions: Patients with Chronic Kidney Disease Stage 5 experience a high level of symptom burden. Weakness was the most prevalent symptom in this sample population. Symptom burden correlated with functional decline. Further longitudinal studies are needed that analyse the impact of symptoms and their management in this population.

Monitoring of Palliative Care Symptoms and Concerns in Specialized Palliative Home Care Using an Electronic Version of the Integrated Palliative care Outcome Scale (Palli-MONITOR): protocol for a mixed-methods study

IntroductionOver the last decades, patient-reported outcome (PRO) measures have been developed to better understand the patient’s perspective and enable patient-centred care. In palliative care, the Integrated Palliative care Outcome Scale (IPOS) is recommended as a PRO tool. Its implementation in specialised palliative home care (SPHC) would benefit from an electronic version validated for the setting.Following the Medical Research Council (MRC) guidance, the study Palli-MONITOR is developing (phase 1) and testing the feasibility (phase 2) of implementing the electronic version of IPOS (eIPOS) in the SPHC setting to inform a cluster-randomised phase 3 trial.Methods and analysisPalli-MONITOR is a multicentre, sequential mixed-methods, two-phase development and feasibility study. The study consists of four substudies. In phase 1 (MRC development phase), qualitative patient interviews and focus groups with SPHC professionals are used to identify barriers and facilitators of eIPOS (substudy I). Substudy II tests the equivalence of eIPOS and IPOS in a crossover randomised controlled trial. Phase 2 (MRC feasibility/piloting phase) includes a quasi-experimental study with two control groups (substudy III), and qualitative interviews as well as focus groups to explore the feasibility and acceptability of the developed intervention (substudy IV).Qualitative data will be analysed with thematic analysis following the framework approach. Quantitative analysis uses a two-way intraclass correlation coefficients model for the equivalence testing. Quantitative analysis of the quasi-experimental study will focus on the primary outcomes, recruitment rates and completeness of eIPOS. Secondary outcomes will include intraindividual change in palliative symptoms and concerns, quality of life and symptom burden.Ethics and disseminationApproval of the ethics committee of the Ludwig Maximilian University Munich was received for all study parts. Results and experiences will be presented at congresses and in written form. Additionally, participating SPHC teams will receive summarised results.Trial registration numberNCT03879668.

Culture in the spotlight—cultural adaptation and content validity of the integrated palliative care outcome scale for dementia: A cognitive interview study

Background: Dementia is a life-limiting disease with high symptom burden. The Integrated Palliative Care Outcome Scale for Dementia (IPOS-Dem) is the first comprehensive person-centered measure to identify and measure palliative care needs of people with dementia. However, such a measure is missing in the German health care system. Aim: To develop a culturally adapted German version of the IPOS-Dem and determine its content validity as a foundation for comprehensive psychometric testing. Design: Cognitive interview study with intermittent analysis and questionnaire adaptation. Interview guide and coding frame followed thematic analysis according to Willis complemented by Tourangeau’s model of cognitive aspects of survey methodology: comprehension, retrieval, judgment, response. Participants: Purposive sample with professionals ( n = 29) and family carers ( n = 6) of people with advanced dementia in seven nursing homes and person’s own home care in four interview rounds ( n = 11; 10; 7; 7). Results: IPOS-Dem was regarded as comprehensive and accessible. Cultural adaption pertained to issues of comprehension and judgment. Comprehension challenges referred to the person-centered concept of “being affected by” used in the POS-measures. Judgment problems related to persons with limited communication causing challenges in assessment. Conclusion: Most issues of cultural adaptation could be addressed by questionnaire modifications. However, interviews unveiled fundamental challenges for using proxy reported person-centered assessments. Continuous training on how to use the instrument is imperative to integrate the person-centered approach of palliative care into nursing homes as a key provider of generalist palliative care for people with dementia. The refined version is ready for psychometric testing.

Validity and reliability of the English and translated Chinese versions of the Integrated Palliative care Outcome Scale (IPOS) in Singapore

Context Measurement of patient-centred outcomes enables clinicians to focus on patient and family priorities and enables quality of palliative care to be assessed. Objectives This study aimed to evaluate the validity and reliability of the English and translated Chinese versions of the Integrated Palliative care Outcome Scale (IPOS) among advanced cancer patients in Singapore. Methods IPOS was forward and backward translated from English into Chinese. Structural validity was assessed by confirmatory factor analysis; known-group validity by comparing inpatients and community patients; construct validity by correlating IPOS with Edmonton Symptom Assessment System-revised (ESAS-r) and Functional Assessment of Cancer Therapy–General (FACT-G); internal consistency by Cronbach’s alpha; inter-rater reliability between patient and staff responses; test-retest reliability of patient responses between two timepoints. Results One hundred eleven English-responding and 109 Chinese-responding patients participated. The three-factor structure (Physical Symptoms, Emotional Symptoms and Communication and Practical Issues) was confirmed with Comparative Fit Index and Tucker-Lewis-Index > 0.9 and Root Mean Square Error of Approximation < 0.08. Inpatients scored higher than outpatients as hypothesised. Construct validity (Pearson’s correlation coefficient, r ≥ |0.608|) was shown between the related subscales of IPOS and FACT-G and ESAS-r. Internal consistency was confirmed for total and subscale scores (Cronbach’s alpha≥0.84), except for the Communication and Practical Issues subscale (Cronbach’s alpha = 0.29–0.65). Inter-rater reliability (Intra-class correlation coefficient [ICC] ≤ 0.43) between patient and staff responses was insufficient. Test-retest reliability was confirmed with Intra-class correlation coefficient ICC = 0.80 (English) and 0.88 (Chinese) for IPOS Total. Conclusion IPOS in English and Chinese showed good validity, good internal consistency, and good test-retest reliability, except for the Communication and Practical Issues subscale. There was poor inter-rater reliability between patients and staff.

Comparison between patient-reported and clinician-reported outcomes: Validation of the Japanese version of the Integrated Palliative care Outcome Scale for staff

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.

Translation and cultural adaptation of IPOS (integrated palliative care outcome scale) in Estonia

Background Patient Reported Outcome Measures (PROMs) are questionnaires that could be used in palliative care (PC) to evaluate patient well-being and monitor their care. PROMs enable a focus on what is important to patients by putting the patient at the center of care. Adapting an existing PROM requires considering cultural differences, general usability and understandability of translated terms. Aim To translate and culturally adapt both the patient and staff three and seven day versions of the Integrated Palliative care Outcome Scale (IPOS) into Estonian. The IPOS consist of 10 questions (staff versions 9 questions) and 17 close ended items. The sub aim is to describe the differences and discrepancies found during the adaptation process and compare the results with previous research. Methods The translation and adaptation process of IPOS was conducted using recommended guidelines consisting of six phases and included cognitive interviews with patients (n = 11) and palliative care multidisciplinary team members (n = 8). The study was conducted in two major Estonian hospitals. Results The Estonian IPOS demonstrated face and content validity, acceptance by patients and staff. As a result of expert group review and cognitive interviews with patients and staff, 9 semantic changes were implemented. Conclusions Patient and staff versions of the IPOS with a recall of 3 or 7 days were translated and culturally adapted for Estonia. The Estonian IPOS four versions are ready for use in Estonia.

Validation and cultural adaptation of the Integrated Palliative care Outcome Scale (IPOS) for the Portuguese population

Background To culturally adapt and validate the Integrated Palliative care Outcome Scale to European Portuguese. Methods Multi-centred observational study with 2 assessment points. Data were collected in nine centres using consecutive sampling. All patients were screened for eligibility. Inclusion criteria: ≥18 years, mentally fit to give consent, diagnosed with an incurable, potentially life-threatening illness, read, write and understand Portuguese. Translation and back translation with independent native speakers blind to the original measure created a Portuguese version, which was culturally adapted using cognitive interviews. For psychometric testing, the COSMIN checklist was followed. Reliability and content validity were assessed for patient and staff versions. Construct and criterion validity were tested for patient version. Results 1703 individuals were screened between July 1st 2015 and February 2016, 135 (7.9%) were included. Mean age was 66.8 years (SD 12.7), 58 (43%) were female. Most patients (109; 80.7%) had a cancer diagnosis. Cronbach’s alpha showed good internal consistency, 0.657 for patient, 0.705 for staff versions. Intraclass correlation coefficient testing reproducibility revealed very good reliability, 0.794–0.950 for patient and 0.456–0.925 for staff versions. There was good content validity and significant results for construct validity. Physical symptoms were better detected by females. IPOS could discriminate: practical issues in different places of care, based on cancer diagnosis, physical and emotional symptoms based on life expectancy both for patient and professional dimensions, physical and emotional symptoms based on phase of illness, for professional dimensions, and physical symptoms from the patients’ viewpoint. Conclusions The Portuguese IPOS is a reliable and valid measure.

Towards patient-centred cancer care: cross-cultural validity and responsiveness of the Turkish Integrated Palliative care Outcome Scale

Background A valid measure to describe the most important needs and concerns of people with life-threatening illnesses is missing in Cyprus. Our aim was to adapt and test the cross-cultural validity and responsiveness of the Integrated Palliative care Outcome Scale (IPOS) in a cohort of Turkish speaking cancer patients. Methods The IPOS (English) patient-reported measure was translated into Turkish following published guidelines including, 2 independent forward, 2 independent blind backward translations, expert panel review by 7 members and field testing with 11 cognitive interviews (5 patients and 6 specialists) and final approval of the copyright holder. Consecutive cancer patients (n = 234) seen by the community palliative care services were recruited from Help Those with Cancer Society (KHYD); of those 82 were followed-up. The instrument was administered by personal interview. Confirmatory Factor Analysis was used to validate the factor structure of Turkish IPOS. Internal consistency reliability of the subscales was evaluated by Cronbach’s alpha and Intraclass Correlation Coefficient respectively. Validity was assessed by calculating Pearson’s correlation coefficient (r) between Turkish IPOS scores and Turkish version of EQ-5D-3L - a validated generic measure of health status developed by the EuroQol Group. Results Turkish IPOS is conceptually and semantically equivalent to the English version and linguistically valid. The CFA was inconclusive for the three factor structure due to low sample size, as the SRMR and CFI tests only approached the defined minimums warranting further investigation. There were low levels of missing values, and no ceiling or floor effects. The Physical (α = 0.91) and the Social and Quality of Care Issues (α = 0.75) sub-scales showed good internal consistencies, however Emotional sub-scale showed poor internal consistency (α = 0.64). The reliability of the Physical (ICC = 0.51, 0.45–0.56 95% CI) and Social Quality of Care Issues (ICC = 0.50, 0.42–0.57 95% CI) were moderate. Poor internal consistency (α =0.64) and reliability (ICC = 0.31, 0.24–0.39, 95% CI) was obtained for Emotional Subscale. Construct validity was evidenced through significant correlations in the predicted directions and strength with EQ-5D. Turkish IPOS showed higher needs and concerns in participants at more advanced stages than those at earlier stages of cancer. The standardized response mean (SRM) of − 0.94 suggested large internal responsiveness to clinical change. Conclusion Turkish IPOS is a clear, relevant, acceptable measure and responsive to the needs and concerns of cancer patients, observing regional differences, it may have implications for use in other Turkish speaking communities. Future studies are needed to clarify the factor structure, assess its external responsiveness and to improve the properties of its Emotional subscale.