Validation of the Integrated Palliative Care Outcome Scale (IPOS) in adults with cystic fibrosis

Author:

Georgiopoulos Anna M.1ORCID,DiFiglia Stephanie2,Seng Elizabeth K.34,Portenoy Russell25,Chaudhary Nivedita6,Wei Ruobin6,Berdella Maria N.7,Friedman Deborah1ORCID,Kier Catherine8,Linnemann Rachel W.910,Middour‐Oxler Brandi910ORCID,Stables‐Carney Teresa8,Walker Patricia7,Wang Janice11,Yonker Lael M.12ORCID,Dhingra Lara213

Affiliation:

1. Department of Psychiatry Massachusetts General Hospital Boston Massachusetts USA

2. MJHS Institute for Innovation in Palliative Care New York New York USA

3. Ferkauf Graduate School of Psychology New York New York USA

4. Albert Einstein College of Medicine Bronx New York USA

5. Departments of Family and Social Medicine and Neurology Albert Einstein College of Medicine Bronx New York USA

6. Department of Pediatrics Massachusetts General Hospital Boston Massachusetts USA

7. Lenox Hill Hospital Northwell Health New York New York USA

8. Stony Brook Medicine Stony Brook New York USA

9. Emory University School of Medicine Atlanta Georgia USA

10. Children's Healthcare of Atlanta Atlanta Georgia USA

11. Long Island Jewish Medical Center Northwell Health New Hyde Park New York USA

12. Pulmonary Division Massachusetts General for Children Boston Massachusetts USA

13. Department of Family and Social Medicine Albert Einstein College of Medicine Bronx New York USA

Abstract

AbstractBackgroundA primary palliative care model for cystic fibrosis (CF) recommends using the Integrated Palliative Care Outcome Scale (IPOS) for screening. Validation of the IPOS is needed.MethodsThis secondary analysis utilized baseline data from a multisite trial of the palliative care model, Improving Life with CF. Adults with CF completed the IPOS, the Memorial Symptom Assessment Scale‐CF (MSAS‐CF), the CF Questionnaire‐Revised (CFQ‐R), the Patient Health Questionnaire (PHQ‐8), the Generalized Anxiety Disorder (GAD‐7), and the Perceived Stress Scale (PSS). IPOS structure was assessed using Cronbach α coefficients and a factor analysis. Construct validity was evaluated through bivariate relationships between IPOS scores and other questionnaire scores, and linear regressions assessing the extent to which the IPOS explains variance in quality‐of‐life domains.ResultsThe sample comprised 256 adults with complete IPOS data. α coefficients were .86 for the IPOS total score, .81 for the Physical Symptoms subscale, .79 for the Emotional Symptoms subscale, and .63 for the Communication/Practical Issues subscale. A two‐component factor structure best aligned with the current subscales. IPOS scores were significantly associated with other measures; associations with MSAS‐CF and CFQ‐R subscales differentiated the IPOS Physical and Emotional subscales. The IPOS total score provided unique information about the variance in the CFQ‐R Physical Functioning and Respiratory Symptoms domain scores.ConclusionsIn adults with CF, the IPOS has acceptable internal consistency and there is evidence of construct validity. These findings support adoption of the IPOS in the primary palliative care model for CF.

Publisher

Wiley

Reference37 articles.

1. Cystic fibrosis: a review;Ong T;JAMA,2023

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3. Palliative care needs among outpatient adults with cystic fibrosis: baseline data from the improving life with CF trial;DiFiglia S;J Cyst Fibros,2023

4. Cooperation or tension? Dyadic coping in cystic fibrosis;Werner S;Fam Process,2021

5. Standards for the care of people with cystic fibrosis (CF); recognising and addressing CF health issues;Burgel PR;J Cyst Fibros,2024

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