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)

Abstract

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 selfreported 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 freetext 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.

Tools to help healthcare professionals recognize palliative care needs in patients with advanced heart failure: A systematic review

“…A total of 19 papers were included (Table 1). These studies described seven tools: the POS/IPOS (Integrated Palliative care Outcome Scale), 28 –30 the Needs Assess-ment Tools Progressive Disease—Heart Failure (NAT: PD-HF), 31,32 the RADboud indicators for PAlliative Care Needs (RADPAC), 33 –38 the Heart Failure Needs Assess-ment Questionnaire (HFNAQ), 39 the Care related Quality of Life for Chronic Heart Failure Questionnaire (CareQol CHF), 40,41 the Heart Failure Palliative Approach to Care (HeFPAC), 42,43 and the Nececidades Paliativas (NECPAL). 44 –46…”

“…The specific aim and future users were determined before the start of the development of the HeFPAC and the RADPAC. 33,37,42 Content validity research in the context of chronic heart failure and palliative care was performed regarding one patient reported outcome measurement: the IPOS, 29,30 and three tools that need to be completed by healthcare professionals: the NAT: PD-HF, 31 the RADPAC, 33,35 and the HeFPAC 42 (Table 3). According to Kane et al, the general IPOS items reflected the patient's chronic heart failure experience.…”

“…31 The levels of psychological and social concern items were not significantly correlated. Janssen et al used the Edmonton Symptom Assessment 29 Ireland Feasibility Oriani et al 30 Ireland United kingdom Evaluation Needs assessment tools progressive diseaseheart failure (NAT: PD-HF)…”

“…28,29,31,32,[34][35][36][37][38][39]45,46 One paper performed a secondary analysis of existing POS/IPOS data collected in three studies and combined data based on multidisciplinary use. 30 Level of feasibility. The IPOS and the NAT: PD-HF are the only tools that have been tested to identify palliative care needs in heart failure practice.…”

Palliative care needs-assessment and measurement tools used in patients with heart failure: a systematic mixed-studies review with narrative synthesis

“…All other tools are generic but have been used for patients with heart failure. A heart failure specific version of IPOS has not been formally tested yet [76]. All tools were developed in high-income countries, and half of them (IPOS, GSF-PIG, SPICT) were developed in the UK.…”