Palliative Care Outcome Research Articles

A collaborative approach in dementia care to improve clinical effectiveness and priorities for research through audit.

To provide appropriate cost-effective care for an ageing population, realignment of care provision to conditions common in advanced age, notably, dementia and multi-morbidities is required. The use of outcome measures in practice may enable this. A collaborative baseline audit was undertaken to understand how best to implement outcome measures into services for people with dementia across clinical settings. An academic institution set up a 6-month collaborative baseline audit in 11 English sites. Measures comprised: symptoms/concerns (Integrated Palliative care Outcome Scale for Dementia); Phase of Illness; functional status (Australia-modified Karnofsky Performance Scale); and dementia severity (Functional Assessment Staging). Measures were completed at first assessment for 225 people with dementia across nine sites. Their completion promoted comprehensive assessments, but challenges also existed, including recording the prevalence/severity of non-physical symptoms by proxy. The joining together of clinical academic expertise enabled mobilisation of expert knowledge into and from clinical practice.

Psychological burden in family caregivers of patients with advanced cancer at initiation of specialist inpatient palliative care

BackgroundThis study prospectively evaluated distress, depressive and anxiety symptoms as well as associated factors in family caregivers (FC) of advanced cancer patients at initiation of specialist inpatient palliative care.MethodsWithin 72 h after the patient’s first admission, FCs were asked to complete German versions of the Distress Thermometer, Generalized Anxiety Disorder 7-item scale (GAD-7), Patient Health Questionnaire depression module 9-item scale (PHQ-9) for outcome measure. Multivariate logistic regression analyses were used to identify associated factors.ResultsIn 232 FCs (62% spouses/partners), mean level of distress was 7.9 (SD 1.8; range, 2–10) with 95% presenting clinically relevant distress levels. Most frequent problems were sadness (91%), sorrows (90%), anxiety (78%), exhaustion (77%) and sleep disturbances (73%). Prevalence rates of moderate to severe anxiety and depressive symptoms were 47 and 39%, respectively. Only 25% of FCs had used at least one source of support previously. In multivariate regression analysis, being female (OR 2.525), spouse/partner (OR 2.714), exhaustion (OR 10.267), and worse palliative care outcome ratings (OR 1.084) increased the likelihood for moderate to severe anxiety symptom levels. Being female (OR 3.302), low socio-economic status (OR 6.772), prior patient care other than home-based care (OR 0.399), exhaustion (OR 3.068), sleep disturbances (OR 4.183), and worse palliative care outcome ratings (OR 1.100) were associated with moderate to severe depressive symptom levels.ConclusionsFCs of patients presenting with indication for specialist palliative care suffer from high distress and relevant depressive and anxiety symptoms, indicating the high need of psychological support not only for patients, but also their FCs. Several socio-demographic and care-related risk-factors influence mental burden of FCs and should be in professional caregivers’ focus in daily clinical practice.

What are the main symptoms and concerns reported by patients with advanced chronic heart failure?—a secondary analysis of the Palliative care Outcome Scale (POS) and Integrated Palliative care Outcome Scale (IPOS)

There is a lack of valid disease-specific patient-reported outcome measures (PROMs) for detecting symptoms and concerns in patients with advanced chronic heart failure (CHF). The Palliative care Outcome Scale (POS) and Integrated Palliative care Outcome Scale (IPOS) are specifically developed to capture the main symptoms and concerns of people severely affected by advanced disease. The aim of this study was to determine whether POS and IPOS captures the main symptoms and concerns self-reported by patients with advanced CHF. A secondary analysis of existing POS/IPOS data collected in three longitudinal studies was conducted. POS and IPOS start with an open-ended question for patients to report their main problems and concerns, followed by subsequent closed questions on a range of symptoms and other concerns. Descriptive statistics were used to report the results. The 102 participants from the three datasets had median age 81 years (SD ±9.84 years); 62% male; 87% white. A total of 107 concerns were reported in the first, open POS/IPOS question seeking the patient's main concerns. Of these, 83 (77%) were reflected in the subsequent IPOS/POS closed questions. The high correspondence between the free-text responses and the closed questions indicates that most issues are captured by the POS/IPOS items. In conclusion, the generic versions of POS and IPOS do capture the main problems and concerns of patients with advanced CHF. Minor adaptations and further psychometric validation of POS and IPOS are needed in this population.

Comparing Methadone Rotation to Consensus Opinion

ContextMethadone is a complex but useful medication for pain management in palliative care. Recent expert opinions have been published on the safe and effective use of methadone. ObjectivesTo determine the success of methadone rotations and evaluate concordance with consensus recommendations by a palliative care consult service. MethodsA retrospective study of methadone rotation practice by a palliative care consult service and outcomes for patients hospitalized between January 1, 2012 and December 31, 2018 at a single academic medical center. A successful rotation was defined as a 30% reduction in pain or as-needed medication use sustained for at least three consecutive days. Patient outcomes were compared with expert consensus recommendations. ResultsAbout 59 patients met the inclusion criteria. The study population was mostly Caucasian men and women of equal proportions who were started on methadone for inadequate pain control. Sixty-eight percent of patients were successfully rotated. Subjects who were rotated using a standardized protocol were six times more likely to have a successful rotation (odds ratio 6.28 [1.25–30.92]; P = 0.0238). ConclusionThe utilization of a standardized protocol was associated with better patient outcomes.

Recognizing the Dying Patient, When Less Could be More: A Diagnostic Framework for Shared Decision-Making at the End of Life

Background:Recognizing dying patients is crucial to produce outcomes that are satisfactory to patients, their families, and clinicians.Aim:Earlier discussion of and shared decision-making around dying to improve these outcomes.Design:In this study, we interviewed 16 senior clinicians to develop summaries of palliative care in 4 key specialties: Cardiology, Vascular Surgery, Emergency General Surgery, and Intensive Care.Setting:Oxford University Hospitals.Results:Based on themes common to our 4 clinical areas, we developed a novel diagnostic framework to support shared palliative decision-making that can be summarized as follows: 1) Is the acute pathology reversible? 2) What is the patient’s physiological reserve? 3) What is important to the patient? Will they be fit enough for discharge for a reasonable length of time?Conclusions:We believe that education using this framework in the medical school and postgraduate curricula would significantly improve recognition of dying patients. This would serve to stimulate earlier conversations, more shared decision-making, and ultimately better outcomes in palliative care and patient experience.

Patient-reported outcome measures: selection of a valid questionnaire for routine symptom assessment in patients with advanced chronic kidney disease \u2013 a four-phase mixed methods study

BackgroundPatient-reported outcome measures (PROMs) are becoming increasingly important in healthcare. In nephrology, there is no agreement on which chronic kidney disease (CKD) symptom questionnaire to use. Therefore, the aim of this study is to select a valid symptom questionnaire for routine assessment in patients with advanced CKD.MethodsA four-phase mixed methods approach, using qualitative and quantitative research methods, was applied. First, a systematic literature search was conducted to retrieve existing symptom questionnaires. Second, a symptom list was created including all symptoms in existing questionnaires and symptoms mentioned in interviews with patients with CKD, from which symptom clusters were identified. Next, questionnaires were selected based on predefined criteria regarding content validity. Last, two online feedback panels of patients with CKD (n = 151) and experts (n = 6) reviewed the most promising questionnaires.ResultsThe literature search identified 121 questionnaires, of which 28 were potentially suitable for symptom assessment in patients with advanced CKD. 101 unique symptoms and 10 symptom clusters were distinguished. Based on predefined criteria, the Dialysis Symptom Index (DSI) and Palliative Care Outcome Scale-Renal Version (IPOS-Renal) were selected and reviewed by feedback panels. Patients needed 5.4 and 7.5 min to complete the DSI and IPOS-Renal, respectively (p < 0.001). Patients experienced the DSI as more specific, complete and straightforward compared to the IPOS-Renal.ConclusionsThe DSI was found to be valid and reliable, the most relevant, complete, and comprehensible symptom questionnaire available for routine assessment in patients with advanced CKD. Routine PROMs collection could be of great value to healthcare, both at individual patient and national level. Feedback on scores and involvement of healthcare providers may promote adaptation and implementation in healthcare.

Reducing Disparities in the Quality of Palliative Care for Older African Americans through Improved Advance Care Planning: Study Design and Protocol

Advance care planning (ACP) improves end-of-life care for patients and their caregivers. However, only one-third of adults have participated in ACP and rates are substantially lower among African Americans than among whites. Importantly, ACP improves many domains of care where there are racial disparities in outcomes, including receipt of goal-concordant care, hospice use, and provider communication. Yet, few studies have examined the effectiveness of ACP interventions among African Americans. The objectives of reducing disparities in the quality of palliative care for older African Americans through improved advance care planning (EQUAL ACP) are as follows: to compare the effectiveness of two interventions in (1) increasing ACP among African Americans and whites and (2) reducing racial disparities in both ACP and end-of-life care; and to examine whether racial concordance of the interventionist and patient is associated with ACP. EQUAL ACP is a longitudinal, multisite, cluster randomized trial and a qualitative study describing the ACP experience of participants. The study will include 800 adults ≥65 years of age (half African American and half white) from 10 primary care clinics in the South. Eligible patients have a serious illness (advanced cancer, heart failure, lung disease, etc.), disability in activities of daily living, or recent hospitalization. Patients are followed for one year and participate in either a patient-guided, self-management ACP approach, including a Five Wishes form or structured ACP with Respecting Choices First Steps. The primary outcome is formal or informal ACP-completion of advance directives, documented discussions with clinicians, and other written or verbal communication with surrogate decision makers about care preferences. Secondary outcomes assessed through after-death interviews with surrogates of patients who die during the study include receipt of goal-concordant care, health services use in the last year of life, and satisfaction with care. EQUAL ACP is the first large study to assess which strategies are most effective at both increasing rates of ACP and promoting equitable palliative care outcomes for seriously ill African Americans.

Clinical pharmacists in palliative care: effects on drug therapy and drug expenses

The effect of integrating clinical pharmacists in German palliative care units with regard to the quality of drug therapy and drug costs has yet not been evaluated. This work aims to assess the number of pharmaceutical interventions (PI) and the cost-benefit ratio of aclinical pharmacist taking part in the interprofessional patient care team on an inpatient palliative care unit in Germany. The number of and underlying reasons for the pharmacist-led recommendations were recorded and analyzed over a1-year period. In addition, the respective drugs and the acceptance rate of recommendations were assessed. To evaluate the cost-benefit ratio, the financial savings in the provision of drugs were recorded and compared with the expenses for the clinical pharmacy service. A total of 245 PI were performed. Most frequently, the pharmacist advised physicians on drug choices and drug dosages. The acceptance rate was 93%. The cost savings in the provision of drugs covered 83% of the expenses for the clinical pharmacy service. The results indicate that the integration of aclinical pharmacist is well suited to optimizing the interprofessional treatment of distressing symptoms with abeneficial economic outcome in palliative care. Consequently, the permanent integration of aclinical pharmacist on an inpatient palliative care unit seems to be beneficial and advisable.

Achieving beneficial outcomes for children with life-limiting and life-threatening conditions receiving palliative care and their families: A realist review

Background: Palliative care for children and young people is a growing global health concern with significant resource implications. Improved understanding of how palliative care provides benefits is necessary as the number of children with life-limiting and life-threatening conditions rises. Aim: The aim is to investigate beneficial outcomes in palliative care from the perspective of children and families and the contexts and hidden mechanisms through which these outcomes can be achieved. Design: This is a systematic realist review following the RAMESES standards. A protocol has been published in PROSPERO (registration no: CRD42018090646). Data sources: An iterative literature search was conducted over 2 years (2015–2017). Empirical research and systematic reviews about the experiences of children and families in relation to palliative care were included. Results: Sixty papers were included. Narrative synthesis and realist analysis led to the proposal of context–mechanism–outcome configurations in four conceptual areas: (1) family adaptation, (2) the child’s situation, (3) relationships with healthcare professionals and (4) access to palliative care services. The presence of two interdependent contexts, the ‘expert’ child and family and established relationships with healthcare professionals, triggers mechanisms, including advocacy and affirmation in decision-making, which lead to important outcomes including an ability to place the emphasis of care on lessening suffering. Important child and family outcomes underpin the delivery of palliative care. Conclusion: Palliative care is a complex, multifactorial intervention. This review provides in-depth understanding into important contexts in which child and family outcomes can be achieved so that they benefit from palliative care and should inform future service development and practice.

Validation of the French Version of the Integrated Palliative Care Outcome Scale

ContextThe Integrated Palliative care Outcome Scale (IPOS) is a widely used tool for assessing patient needs in palliative care. ObjectivesThe aim of this study was to provide a validated version of the patient and staff IPOS for French-speaking Switzerland (IPOS-Fr) and assess its psychometric properties. MethodsThe validation took place in 12 palliative care units and mobile teams. At baseline (T1) and three days later (T2), patients' general health status, palliative care needs (IPOS-Fr), and quality of life (McGill Quality of Life Scale–Revised) were assessed by patients and staff. ResultsWe included 173 patients (mean age: 68.8; 92 women; 85% oncologic disease). IPOS internal consistency was high for the total score (0.69 and 0.71). Staff-patient interrater agreement was good to moderate for 13 items (intraclass correlations >0.516). Results indicated strong correlations between IPOS-Fr and McGill Quality of Life Scale–Revised for the total score (−0.623 at T1) and the psychological domain (Item 11: −0.601 at T1; Item 13: −0.633 at T2). Regarding sensitivity to change, there was a significant difference between T1 and T2 for patients with an improved health condition (z = −2.326; P = 0.020). ConclusionIPOS-Fr has fair to good validity, especially with regard to interrater agreement and construct validity, is sensitive to positive change, and has good interpretability and acceptability for patients and staff. IPOS-Fr is not optimal in terms of internal consistency and structure when using subscale scores, except for the emotional subscale.

Validation of a palliative care outcome measurement tool supplemented by neurological symptoms (HOPE+): Identification of palliative concerns of neurological patients

Background: There is growing interest to integrate palliative care and its structures into the care of neurological patients. However, in Germany there is no comprehensive assessment tool capturing the symptoms of patients with advanced neurological diseases. Aim: To validate a newly developed palliative care measurement tool based on an extension of the validated core documentation system Hospice and Palliative Care Evaluation considering additional neurological issues (HOPE+). Design: Prospective, observational study using HOPE+ and as external criteria, the Eastern Cooperative Oncology Group (ECOG) performance status and the 12 months “surprise” question (12-SQ) in a neurological population, and assessment for its construct validity and diagnostic accuracy. Setting/participants: All newly admitted patients to the Department of Neurorehabilitation, Dr. Becker Rhein-Sieg-Clinic aged 18–100 years (#DRKS00010947). Results: Data from 263 patients (63 ± 14 years of age) were analyzed. HOPE+ revealed a moderately correlated six-factor structure (r = –0.543–0.525). Correlation analysis to evaluate discriminant validity using ECOG as external criterion was high (rs(261) = 0.724, p < 0.001) and confirmed for severely affected patients by adding the 12-SQ (“No”-group: 48.00 ± 14.92 vs “Yes”-group: 18.67 ± 7.57, p < 0.009). Operating characteristics show satisfactory diagnostic accuracy (area under the curve: 0.746 ± 0.049, 95% confidence interval = 0.650–0.842). Conclusion: HOPE+ demonstrates promising psychometric properties. It helps to assess palliative care issues of patients in neurological settings and, in combination with the 12-SQ, conceivably conditions when to initiate the palliative care approach in a population underrepresented in palliative care structures so far.

SUN-102 NUTRITION-IMPACT SYMPTOM BURDEN IN PATIENTS ATTENDING RENAL SUPPORTIVE CARE

End-stage kidney disease is associated with high symptom burden resulting in increased morbidity and mortality. Renal Supportive Care (RSC) is a multi-disciplinary approach to the management of patients with end-stage kidney disease who have chosen a conservative (non-dialysis) pathway or receiving renal replacement therapies (RRT) (eg. haemodialysis, peritoneal dialysis and transplantation) and suffering a significant symptom burden. Nutritional counselling plays an important role in the management of symptoms affecting a patient’s ability to eat well and prevent or treat malnutrition. Currently, no Australian data exists to describe the nutrition-impact symptom burden suffered by this group and the change in this symptom burden with nutritional counselling. This study aimed to describe the burden of nutrition-impact symptoms suffered by patients attending RSC and to describe the change in number and severity of nutrition-impact symptoms with dietetic intervention. A prospective audit was conducted from August 2015 to December 2017 for patients attending RSC across NSW. The presence and severity of nutrition-impact symptoms (poor appetite, sore or dry mouth, constipation, nausea, vomiting, diarrhoea) was assessed using the Palliative Care Outcome Scale-Renal (IPOS-Renal). Nutrition symptoms were scored from mild (1) to overwhelming (4). Nutrition-impact symptom severity scores were calculated by dividing the total symptom score by the number of nutrition symptoms. In NSW, patients on dialysis attending RSC services suffered from a higher rate of nutrition-impact symptoms than those being conservatively managed. The most frequently reported nutrition-impact symptoms were sore or dry mouth, poor appetite and constipation in both dialysis and conservatively managed patients. Sore or dry mouth was the most frequent symptom (63% of dialysis patients and 59% of conservatively managed patients), followed by poor appetite (54% in both dialysis and conservatively managed patients) and constipation (47% of dialysis patients and 37% of conservatively managed patients). Among dialysis patients, there was a decrease in total number of nutrition-impact symptoms between initial and follow-up nutritional assessments, 2.58 to 2.39 respectively. However, there was no change in the total number of nutrition-impact symptoms among conservative care patients with an average of 2.10 nutrition-related symptoms. The nutrition-impact symptom severity score of patients receiving dialysis (n=59) was 0.85 compared with 0.65 in conservatively managed patients (n=109). In both the dialysis (n=117) and conservative groups (n=251), nutrition-impact symptom severity improved between initial and follow-up dietitian interventions (0.76 and 0.59 respectively). Patients receiving dialysis attending RSC services suffer the highest nutrition-impact symptom burden. The three most common nutrition-impact symptoms experienced in both dialysis and conservatively managed patients being a sore or dry mouth, poor appetite and constipation. This study demonstrated that interventions by a dietitian were associated with reduced total number of nutrition-impact symptoms in dialysis patients and a decrease in nutrition-impact symptom severity in both dialysis and conservatively managed patients.

MON-094 EXTENDED HOURS IN-CENTRE NOCTURNAL HAEMODIALYSIS, A REGIONAL AUSTRALIAN PERSPECTIVE

There is an increasing need for renal replacement therapy in regional and remote Australia. Research has highlighted the benefits of home based nocturnal haemodialysis compared to conventional haemodialysis. Unfortunately, home based therapies may not be possible due to patient or residential factors. We propose that there are potential benefits of extended hours nocturnal in-centre haemodialysis compared to conventional haemodialysis in a regional Australian population. To compare quality of life scores for patients whilst on conventional haemodialysis with the subsequent scores on extended hours in-centre nocturnal haemodialysis. We conducted a prospective longitudinal non-randomised study. Current patients on conventional haemodialysis in Ballarat, Victoria who elected to change to the nocturnal haemodialysis regime independently of this study were consented to participate (n=13). Data was collected pre and post the commencement of extended hours in-centre nocturnal haemodialysis. The primary outcome was quality of life measured by the validated Palliative Care Outcome Scale (POS). Secondary outcome measures included haemoglobin (Hb), phosphate, calcium, urea reduction ratio (URR), albumin, alkaline phosphatase (ALP) and dropout rate. Preliminary results: Interim analysis using paired t-tests demonstrated no difference in POS scores at 1 month (95% CI p=0.383) and a trend towards lower mean serum phosphate after 3 months, although this was not statistically significant (95%CI p=0.096). Initial data suggests that changing from conventional haemodialysis to extended hours in-centre nocturnal haemodialysis does not change the mean patient POS quality of life score after 1 month. However, there may be a difference in outcomes after a longer duration on the nocturnal haemodialysis regime. This study is ongoing to assess primary and secondary outcomes at 6 months.

SUN-095 Patient Reported Outcome Measures Over the First Three Months of Dialysis: Interim Results from the Multidisciplinary Assessment at Dialysis Entry (MADE) Study

Patient reported outcome measures (PROMs) assess outcomes of importance to patients. They include measures of a patients’ health or health care from the patient’s perspective. The benefits of measuring PROMs can include identifying unmet physical and psychological need, facilitating enhanced staff/patient communication and improving the quality of care. The aim of the Multidisciplinary Assessment at Dialysis Entry (MADE) study was to identify PROMs that impact upon the quality of the patient’s illness experience in the first 6 months of dialysis in order to develop a validated tool to be embedded within standard practice. We report results from the first 3 months of data. Longitudinal descriptive design. Participants commenced dialysis (hemodialysis or peritoneal dialysis) over a 6-month period (November 2017 to June 2018) in the Central & Northern Adelaide Renal & Transplantation Service (CNARTS) in South Australia. Study approved by the health service human research ethics committee with fully informed consent. Participants completed a 169 item questionnaire within 2 weeks of commencing dialysis and completed the same questionnaire at 12 weeks following commencement of dialysis. The instrument measured: illness and symptom perception (Palliative Care Outcome Scale-Renal (IPOS-Renal) Brief Illness Perception Questionnaire (B-IPQ), Illness Intrusiveness Ratings Scale (IIRS)); psychosocial health (Depression Anxiety and Stress Scales (DASS-21), Brief COPE Inventory, Emotional Thermometer (ET)); gastro-intestinal health (Gastrointestinal Symptom Rating Scale, Bristol Stool Chart, Food Frequency Questionnaire (FFQ)); sleep (Pittsburgh Sleep Quality Assessment (PSQI)), and health literacy (Brief Health Literacy Screening tool, Morisky Medication Adherence Scale (MMAS-8)). In addition, cognitive function (Montreal Cognitive Assessment (MoCA)) and physical function measures (Grip Strength, Timed Up and Go (TUG) were performed. A patient participant focus group was formed to provide study feedback. From a population frame of 64 incident dialysis patients 43 participants were enrolled (67% response rate), 28% female, mean age 62.1 years (SD 14.4) and 37% with diabetes. 33 out of 43 participants completed the survey at 12 weeks demonstrating non-significant trended improvement in items related to shortness of breath, energy, drowsiness, appetite, itching, mobility, cognition, anxiety, bowel health, social relations, physical function, health literacy and sleep quality. There was a non-significant decline in the participants’ perceptions of developing coping strategies as measured by the COPE Scale. Study participant focus group members were positive regarding patient participation in this ESKD PROMs study. The majority of PROMs over the first 3 months of dialysis revealed non-significant improvement. Current and further analysis will contribute to the development of a more concise tool to be embedded within standard practice.

Which outcome domains are important in palliative care and when? An international expert consensus workshop, using the nominal group technique

Background: When capturing patient-level outcomes in palliative care, it is essential to identify which outcome domains are most important and focus efforts to capture these, in order to improve quality of care and minimise collection burden. Aim: To determine which domains of palliative care are most important for measurement of outcomes, and the optimal time period over which these should be measured. Design: An international expert consensus workshop using nominal group technique. Data were analysed descriptively, and weighted according to ranking (1–5, lowest to highest priority) of domains. Participants’ rationales for their choices were analysed thematically. Setting/participants: In all, 33 clinicians and researchers working globally in palliative care outcome measurement participated. Two groups (n = 16; n = 17) answered one question each (either on domains or optimal timing). This workshop was conducted at the 9th World Research Congress of the European Association for Palliative Care in 2016. Results: Participants’ years of experience in palliative care and in outcome measurement ranged from 10.9 to 14.7 years and 5.8 to 6.4 years, respectively. The mean scores (weighted by rank) for the top-ranked domains were ‘overall wellbeing/quality of life’ (2.75), ‘pain’ (2.06), and ‘information needs/preferences’ (2.06), respectively. The palliative measure ‘Phase of Illness’ was recommended as the preferred measure of time period over which the domains were measured. Conclusion: The domains of ‘overall wellbeing/quality of life’, ‘pain’, and ‘information needs/preferences’ are recommended for regular measurement, assessed using ‘Phase of Illness’. International adoption of these recommendations will help standardise approaches to improving the quality of palliative care.

A brief, patient- and proxy-reported outcome measure in advanced illness: Validity, reliability and responsiveness of the Integrated Palliative care Outcome Scale (IPOS)

Background: Few measures capture the complex symptoms and concerns of those receiving palliative care. Aim: To validate the Integrated Palliative care Outcome Scale, a measure underpinned by extensive psychometric development, by evaluating its validity, reliability and responsiveness to change. Design: Concurrent, cross-cultural validation study of the Integrated Palliative care Outcome Scale – both (1) patient self-report and (2) staff proxy-report versions. We tested construct validity (factor analysis, known-group comparisons, and correlational analysis), reliability (internal consistency, agreement, and test–retest reliability), and responsiveness (through longitudinal evaluation of change). Setting/participants: In all, 376 adults receiving palliative care, and 161 clinicians, from a range of settings in the United Kingdom and Germany Results: We confirm a three-factor structure (Physical Symptoms, Emotional Symptoms and Communication/Practical Issues). Integrated Palliative care Outcome Scale shows strong ability to distinguish between clinically relevant groups; total Integrated Palliative care Outcome Scale and Integrated Palliative care Outcome Scale subscale scores were higher – reflecting more problems – in those patients with ‘unstable’ or ‘deteriorating’ versus ‘stable’ Phase of Illness (F = 15.1, p < 0.001). Good convergent and discriminant validity to hypothesised items and subscales of the Edmonton Symptom Assessment System and Functional Assessment of Cancer Therapy–General is demonstrated. The Integrated Palliative care Outcome Scale shows good internal consistency (α = 0.77) and acceptable to good test–retest reliability (60% of items kw > 0.60). Longitudinal validity in form of responsiveness to change is good. Conclusion: The Integrated Palliative care Outcome Scale is a valid and reliable outcome measure, both in patient self-report and staff proxy-report versions. It can assess and monitor symptoms and concerns in advanced illness, determine the impact of healthcare interventions, and demonstrate quality of care. This represents a major step forward internationally for palliative care outcome measurement.

Patients' experiences of using the Integrated Palliative care Outcome Scale for a person-centered care: A qualitative study in the specialized palliative home-care context.

The aim of this study was to explore patients' experiences of using the Integrated Palliative care Outcome Scale (IPOS) during specialized palliative home care. The study adopted a qualitative approach with an interpretive descriptive design. Interviews were performed with 10 patients, of whom a majority were diagnosed with incurable cancer. Our findings suggest that the use of IPOS as a basis for conversation promotes safe care by making the patients feel confident that the care provided was adapted to them which givesthem a sense of safety. IPOS facilitated discussions between patients and nurses about care needs. The patients believed that using IPOS enabled reflection on their well-being and life situation. In conclusion, the study finds that using IPOS is beneficial and provide ways to enable person-centered care and with advantage could be used in specialized palliative home care. The results may help overcome barriers and facilitate the use of patient-reported outcome measures (PROMs). To enable the use of PROMs such as IPOS in palliative home care, nurses need education and opportunities to develop routines that enable patients' voice to be heard and thereby compose a basis for care.

Patient-reported outcome measures and their utility in the management of patients with advanced chronic kidney disease.

Symptom and quality of life (QOL) measures in patients with advanced chronic kidney disease are recognized indicators of patient-centred care and represent important research, quality and clinical measures. This study examined relationships between symptom burden, QOL and functional status and associations of symptoms and mortality risk. A multisite longitudinal cohort analysis was undertaken in chronic kidney disease stage 4/5 (no dialysis) and dialysis patients. Patients completed symptom and QOL measures (Palliative Care Outcome Symptom Score renal), World Health Organisation QOL Brief Version) and Karnofsky Performance scale. Clinical and demographic data were recorded.

Challenges in a six-phase process of questionnaire adaptation: findings from the French translation of the Integrated Palliative care Outcome Scale

BackgroundThe Integrated Palliative care Outcome Scale (IPOS) was developed for evaluating essential outcomes for palliative care patients. Our objectives here are to describe the process of a six-phase cross-cultural adaptation of IPOS to French (IPOS-Fr), highlight the difficulties encountered and strategies to solve them, and discuss the implications that adaptation may have on the validity and reliability of a questionnaire.MethodsThe adaptation of IPOS consisted of six phases: (i) literature review and interviews with target population; (ii) forward translation to French; (iii) backward translation to English; (iv) Expert Review; (v) cognitive interviews with target population; (vi) final review.ResultsTranslation, cognitive interviews, and exchanges with Expert Review members allowed to make changes adapted to the target language regarding item 5 (“vomiting”) and 8 (“sore or dry mouth”), and to identify and address, in the original version of IPOS, syntactic inconsistencies in language used in items 11 to 15 and methodological problems with items 11 (“anxiety about treatment and illness”), 15 (“share … as much as you wanted”) and 17 (“problems addressed”). The adaptation also indicated that patients might have difficulties in interpreting items 8 (“sore or dry mouth”), 10 (“poor mobility”), 11 (“anxiety”), 12 (projected feelings of family and friends), and 14 (“feeling at peace”), thus indicating the need of monitoring during the psychometric validation.ConclusionsFollowing this process, IPOS-Fr has proved content and face validity. In our case, the adaptation allowed adjustments to be made to the questionnaire and, when this was not possible, highlighted potential biases and inconsistencies during the validation. The result relied on an intertwined and iterative process of seeking and reaching semantic, conceptual, and normative equivalence. We are now assessing the psychometrical properties of IPOS-Fr.

PATIENTS’ AND NURSES’ PERCEPTIONS OF PALLIATIVE CARE OUTCOMES: A COMPARATIVE STUDY

Background. Patients with advanced cancer require treatment and the fulfillment of their needs, based on the results of assessments regarding their physical symptoms, psychological and spiritual needs. Palliative care should be delivered with a person-centered care approach. It is important to consider the patients’ reports of their carings’ outcomes. Comparisons between the patients’ and nurses’ perceptions of palliative care outcomes can be used to improve the quality of palliative care.Objective. The purpose of this study is to compare the patients’ and nurses’ perceptions of palliative care outcomes during the patients’ hospitalization.Methods. This is a comparative descriptive study with a cross-sectional design. Data were collected from May to June 2018 from a total of 106 patients with advanced cancer, and 61 nurses. The versions of the Palliative care Outcome Scale (POS) for patients and nurses were used to measure the palliative care outcomes of the patients’ and nurses’ perceptions.Result. The study found a significant difference between the perceptions of the patients and nurses for the palliative care outcomes, particularly in the information availability domain (p = 0.001), the other symptoms domain (p = 0.029), and the anxiety feelings domain (p = 0.030), while the other seven domains had no significant differences between both groups (p &gt; 0.05).Conclusion. The anxiety feelings, other symptoms and information availability domains are the aspects of palliative care which need more attention from health care providers, especially nurses, when caring for patients with advanced cancer.