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

Published online by Cambridge University Press:  05 March 2021

Hiroki Sakurai Open the ORCID record for Hiroki Sakurai [Opens in a new window] ,
Mitsunori Miyashita ,
Tatsuya Morita ,
Akemi Shirado Naito ,
Shingo Miyamoto ,
Hiroyuki Otani ,
Junko Nozato ,
Naosuke Yokomichi ,
Kengo Imai  and
Ai Oishi
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Hiroki Sakurai*
Affiliation:
Department of Palliative Medicine, Toranomon Hospital, Tokyo, Japan
Mitsunori Miyashita
Affiliation:
Department of Palliative Nursing and Health Sciences, Tohoku University Graduate School of Medicine, Sendai, Japan
Tatsuya Morita
Affiliation:
Department of Palliative and Supportive Care, Seirei Mikatahara General Hospital, Hamamatsu, Japan
Akemi Shirado Naito
Affiliation:
Department of Palliative Care, Miyazaki Medical Association Hospital, Miyazaki, Japan
Shingo Miyamoto
Affiliation:
Department of Medical Oncology, Japanese Red Cross Medical Center, Tokyo, Japan
Hiroyuki Otani
Affiliation:
Department of Palliative Care Team, and Palliative and Supportive Care, National Kyushu Cancer Center, Fukuoka, Japan
Junko Nozato
Affiliation:
Department of Cancer Center, Tokyo Medical and Dental University, Tokyo, Japan
Naosuke Yokomichi
Affiliation:
Department of Palliative and Supportive Care, Seirei Mikatahara General Hospital, Hamamatsu, Japan
Kengo Imai
Affiliation:
Seirei Hospice, Seirei Mikatahara General Hospital, Hamamatsu, Japan
Ai Oishi
Affiliation:
Primary Palliative Care Research Group, Usher Institute of Population Health Sciences and Informatics, the University of Edinburgh, Edinburgh, UK
Yoshiyuki Kizawa
Affiliation:
Department of Palliative Medicine, Kobe University School of Medicine, Kobe, Japan
Eisuke Matsushima
Affiliation:
Section of Liaison Psychiatry and Palliative Medicine, Graduate School of Medical and Dental Sciences, Tokyo Medical and Dental University, Tokyo, Japan
*
Author for correspondence: Hiroki Sakurai, Department of Palliative Medicine, Toranomon Hospital, 2-2-2 Toranomon, Minato-ku, Tokyo 105-8470, Japan. E-mail: sakurahr2004@gmail.com
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Abstract

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.

Keywords

CancerClinician-reported outcome measuresIntegrated Palliative care Outcome ScalePalliative care
Type
Original Article
Information
Palliative & Supportive Care , Volume 19 , Issue 6 , December 2021 , pp. 702 - 708
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Copyright
Copyright © The Author(s), 2021. Published by Cambridge University Press

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References

REFERENCES

Antunes, B, Rodrigues, PP, Higginson, IJ, et al. (2016) Validation of the Integrated Palliative care Outcome Scale (IPOS) to the Portuguese population — Preliminary results. Palliative Medicine 30, NP107–NP108.Google Scholar
Antunes, B, Rodrigues, PP, Higginson, IJ, et al. (2018) Outcome measurement — A scoping review of the literature and future developments in palliative care clinical practice. Annals of Palliative Medicine 7(3), S196–S206.CrossRefGoogle ScholarPubMed
Bausewein, C, Daveson, BA, Currow, DC, et al. (2016) EAPC White Paper on outcome measurement in palliative care: Improving practice, attaining outcomes and delivering quality services — Recommendations from the European Association for Palliative Care (EAPC) Task Force on Outcome Measurement. Palliative Medicine 30, 6–22.CrossRefGoogle ScholarPubMed
Breitbart, W, Bruera, E, Chochinov, H, et al. (2018) Neuropsychiatric syndromes and psychological symptoms in patients with advanced cancer. Journal of Pain and Symptom Management 10, 131–141.CrossRefGoogle Scholar
Eisenchlas, JH, Harding, R, Daud, ML, et al. (2008) Use of the palliative outcome scale in Argentina: A cross-cultural adaptation and validation study. Journal of Pain and Symptom Management 35, 188–202.CrossRefGoogle ScholarPubMed
Ellis-Smith, C, Evans, CJ, Murtagh, FEM, et al. (2017) Development of a caregiver-reported measure to support systematic assessment of people with dementia in long-term care: The Integrated Palliative care Outcome Scale for Dementia. Palliative Medicine 31, 651–660.CrossRefGoogle ScholarPubMed
Ellis-Smith, C, Higginson, IJ, Daveson, BA, et al. (2018) How can a measure improve assessment and management of symptoms and concerns for people with dementia in care homes? A mixed-methods feasibility and process evaluation of IPOS-Dem. PLoS One 13, e0200240.CrossRefGoogle Scholar
Evans, CJ, Benalia, H, Preston, NJ, et al. (2013) The selection and use of outcome measures in palliative and end-of-life care research: The MORECare International Consensus Workshop. Journal of Pain and Symptom Management 46, 925–937.CrossRefGoogle ScholarPubMed
Fayers, P, Aaronson, N, Bjordal, K, et al. (2001) EORTC QLQ-C30 Scoring Manual, 3rd ed. Brussels: European Organization for Research and Treatment of Cancer.Google Scholar
Ferrell, BR, Temel, JS, Temin, S, et al. (2017) Integration of palliative care into standard oncology care: American Society of Clinical Oncology clinical practice guideline update. Journal of Clinical Oncology 35, 96–112.CrossRefGoogle ScholarPubMed
Hearn, J and Higginson, IJ (1999) Development and validation of a core outcome measure for palliative care: The palliative care outcome scale. Palliative Care Core Audit Project Advisory Group. Quality in Health Care 8, 219–227.CrossRefGoogle ScholarPubMed
Higginson, IJ and McCarthy, M (1993) Validity of the support team assessment schedule: Do staffs’ ratings reflect those made by patients or their families? Palliative Medicine 7, 219–228.CrossRefGoogle ScholarPubMed
Jones, JM, McPherson, CJ, Zimmermann, C, et al. (2011) Assessing agreement between terminally ill cancer patients’ reports of their quality of life and family caregiver and palliative care physician proxy ratings. Journal of Pain and Symptom Management 42, 354–365.CrossRefGoogle ScholarPubMed
Jordan, K, Aapro, M, Kaasa, S, et al. (2018) European Society for Medical Oncology (ESMO) position paper on supportive and palliative care. Annals of Oncology 29, 36–43.CrossRefGoogle ScholarPubMed
Kane, PM, Daveson, BA, Ryan, K, et al. (2017) Feasibility and acceptability of a patient-reported outcome intervention in chronic heart failure. BMJ Supportive and Palliative Care 7, 470–479.CrossRefGoogle ScholarPubMed
Kobayashi, K, Takeda, F, Teramukai, S, et al. (1998) A cross-validation of the European organization for research and treatment of cancer QLQ-C30 (EORTC QLQ-C30) for Japanese with lung cancer. European Journal of Cancer 34, 810–815.CrossRefGoogle ScholarPubMed
Koo, TK and Li, MY (2016) A guideline of selecting and reporting intraclass correlation coefficients for reliability research. Journal of Chiropractic Medicine 15, 155–163.CrossRefGoogle ScholarPubMed
Lind, S, Sandberg, J, Brytting, T, et al. (2018) Implementation of the integrated palliative care outcome scale in acute care settings — A feasibility study. Palliative and Supportive Care 16, 698–705.CrossRefGoogle ScholarPubMed
May, P, Normand, C, Cassel, JB, et al. (2018) Economics of palliative care for hospitalized adults with serious illness: A meta-analysis. JAMA Internal Medicine 178, 820–829.CrossRefGoogle ScholarPubMed
Miyashita, M, Yasuda, M, Baba, R, et al. (2010) Inter-rater reliability of proxy simple symptom assessment scale between physician and nurse: A hospital-based palliative care team setting. European Journal of Cancer Care 19, 124–130.CrossRefGoogle ScholarPubMed
Murtagh, FEM, Ramsenthaler, C, Firth, A, et al. (2019) A brief, patient- and proxy-reported outcome measure in advanced illness: Validity, reliability and responsiveness of the Integrated Palliative care Outcome Scale (IPOS). Palliative Medicine 33, 1045–1057.CrossRefGoogle Scholar
Neumann, PJ, Araki, SS and Gutterman, EM (2000) The use of proxy respondents in studies of older adults: Lessons, challenges, and opportunities. Journal of the America Geriatrics Society 48, 1646–1654.CrossRefGoogle ScholarPubMed
Preston, NJ, Fayers, P, Walters, SJ, et al. (2013) Recommendations for managing missing data, attrition and response shift in palliative and end-of-life care research: Part of the MORECare research method guidance on statistical issues. Palliative Medicine 27, 899–907.CrossRefGoogle ScholarPubMed
Robertson, S, Cooper, C, Hoe, J, et al. (2020) Comparing proxy rated quality of life of people living with dementia in care homes. Psychological Medicine 50, 86–95.CrossRefGoogle ScholarPubMed
Roydhouse, JK, Gutman, R, Keating, NL, et al. (2018) Proxy and patient reports of health-related quality of life in a national cancer survey. Health and Quality of Life Outcomes 16, 6.CrossRefGoogle Scholar
Sakurai, H, Miyashita, M, Imai, K, et al. (2019) Validation of the Integrated Palliative care Outcome Scale (IPOS) — Japanese version. Japanese Journal of Clinical Oncology 49, 257–262.CrossRefGoogle ScholarPubMed
Schulz, KF and Grimes, DA (2002) Sample size slippages in randomised trials: Exclusions and the lost and wayward. Lancet 359, 781–785.CrossRefGoogle ScholarPubMed
Seow, H, Barbera, L, Sutradhar, R, et al. (2011) Trajectory of performance status and symptom scores for patients with cancer during the last six months of life. Journal of Clinical Oncology 9, 1151–1158.CrossRefGoogle Scholar
Sobanski, PZ, Alt-Epping, B, Currow, DC, et al. (2020) Palliative care for people living with heart failure: European Association for Palliative Care Task Force expert position statement. Cardiovascular Research 116, 12–27.CrossRefGoogle ScholarPubMed
Sterie, AC, Borasio, GD and Bernard, M (2019) Validation of the French version of the Integrated Palliative care Outcome Scale. Journal of Pain and Symptom Management 58, 886–890.CrossRefGoogle ScholarPubMed
Temel, JS, Greer, JA, Muzikansky, A, et al. (2010) Early palliative care for patients with metastatic non-small-cell lung cancer. New England Journal of Medicine 363, 733–742.CrossRefGoogle ScholarPubMed
The Lancet Neurology (2017) Integrating palliative care into neurological practice. Lancet Neurology 16, 489.CrossRefGoogle Scholar
Usman, A, Lewis, S, Hinsliff-Smith, K, et al. (2018) Measuring health-related quality of life of care home residents: Comparison of self-report with staff proxy responses. BMJ Open 8, e022127.CrossRefGoogle ScholarPubMed