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

2020 ◽  
Vol 18 (1) ◽  
Author(s):  
Mevhibe B. Hocaoglu ◽  
Nilay Hepgul ◽  
India Tunnard ◽  
Emine Meltem ◽  
Hande Efe ◽  
...  

Abstract 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.

2016 ◽  
Vol 31 (3) ◽  
pp. 275-282 ◽  
Author(s):  
Alze Pereira dos Santos Tavares ◽  
Carolina Paparelli ◽  
Carolina Sassaki Kishimoto ◽  
Silvia Avo Cortizo ◽  
Karen Ebina ◽  
...  

Background: Gathering clinical evidence data on patients’ palliative care needs is paramount to identify changes in outcomes over time and maintaining on-going quality improvement. Implementation of patient-centred outcome measures has been widely recommended. The routine use of these instruments in daily practice is challenging and not widespread. Aim: To implement a patient-centred outcome measure in daily practice and fulfil one quality indicator: improve pain during the 72 h after admission, in at least 75% of patients. Design: An observational prospective study. The Palliative care Outcome Scale was used at admission (T0), third day (T1) and weekly. Setting/participants: Hospital palliative care unit with 17 individual rooms. All patients admitted to the unit were included in the study. Results: Preliminary results ( N = 84) revealed inconsistent and missing data (14%). Symptoms were sub-optimally controlled by T1. Processes changed, and only a team member could apply Palliative care Outcome Scale. Doctors were encouraged to grasp the meaning of Palliative care Outcome Scale results for each patient. The post-pilot included 317 patients. No missing data occurred. There was an improvement in most items between T0 and T1: ‘pain’ and ‘other symptoms’ presented statistical significant differences ( p < 0.05). Conclusion: Implementing a patient-centred outcome measure in a hospital palliative care service is feasible and improves quality of care. Controlling high pain at T0 improved (>80%) by T1. Results became more consistent and symptom control was improved overall. Patients are evaluated based on holistic domains by an interdisciplinary team and we have added a much needed measure to help guide improvement of the quality of care provided.


2018 ◽  
Vol 20 (5) ◽  
pp. 475-481 ◽  
Author(s):  
Caterina Magnani ◽  
Alice Calvieri ◽  
Diana Giannarelli ◽  
Margot Espino ◽  
Giuseppe Casale

Objectives: A prospective, observational study was conducted in our palliative care unit to assess the impact of peripherally inserted central catheters (PICCs), midline, and “short” midline catheters on the quality of care in cancer and non-cancer patients. The secondary objective was to assess pain and distress during vascular access device insertion. Methods: Patients were recruited if they underwent insertion of a PICC, midline, or “short” midline catheter as part of their standard care. The Palliative care Outcome Scale was used to assess changes in quality of care after vascular access device positioning. A numerical rating scale was used to measure pain intensity during catheter insertion. Results: Of the 90 patients enrolled, 52.2% were male with a mean age of 73.0 ± 13 years. Among these patients, 64.4% patients underwent “short” midline insertion, 26.7% PICC, and 8.9% midline catheter. The patients’ mean baseline Palliative care Outcome Scale score was 15.7 ± 5.6. Three days after vascular access device positioning, the patients’ mean Palliative care Outcome Scale score was 11.5 ± 5.5 (p < 0.0001). Mean pain score during vascular access device insertion was 1.26 ± 1.63, and mean procedural distress score was 1.78 ± 1.93. Conclusion: These findings suggest that medium-term intravenous catheters can have a favorable impact on quality of care and the procedures for these vascular access device insertions are well tolerated. Further research on the performance of different vascular access devices and their appropriateness in palliative care should be encouraged.


2019 ◽  
Vol 33 (8) ◽  
pp. 1045-1057 ◽  
Author(s):  
Fliss EM Murtagh ◽  
Christina Ramsenthaler ◽  
Alice Firth ◽  
Esther I Groeneveld ◽  
Natasha Lovell ◽  
...  

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.


2005 ◽  
Vol 21 (4) ◽  
pp. 464-470 ◽  
Author(s):  
Elena Aldasoro ◽  
Adelina Pérez Alonso ◽  
Laureano Ribacoba ◽  
Santiago Esnaola ◽  
Maite Olaizola ◽  
...  

Objectives:During the final period of life, patients with cancer in the Basque Country are given treatment in different types of hospital care. This study compared the quality of care according to the type of care in one of the autonomous communities in Spain.Methods:A retrospective study was carried out of cancer patients who died in conventional hospital services, home hospitalization services, and palliative care units. In addition to hospital stay and readmission number, variables based on the recommendations of Spanish Society for Palliative Care were studied.Results:End-of-life was diagnosed in 57 percent of a sample of 486 patients, 3 days before death (median). The use of symptom control scales was only documented in the clinical records of eight patients. Sociofamily evaluation was not found. Patients in conventional hospital services were less frequently diagnosed with end-of-life and agony and were significantly different from the rest in the reasons for admission, symptoms assessed, drugs used, administration routes, and dosage forms. Pain was evaluated in 50 percent of the patients and was better controlled in palliative care units. Patients not diagnosed with agony (52 percent) were more frequently not given specific treatment.Conclusions:End-of-life in cancer patients was diagnosed too late. The quality of care in palliative care units and by home hospitalization service was better than that in conventional hospitalization. Nevertheless, there were areas for improvement in the three modalities of care.


2021 ◽  
Vol Publish Ahead of Print ◽  
Author(s):  
Daniel Gutiérrez-Sánchez ◽  
Rafael Gómez-García ◽  
María Luisa Martín Roselló ◽  
Antonio I. Cuesta-Vargas

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