Abstract
BackgroundWith the prevalence of late-stage cancers at diagnosis remained more than 52.0%, the number of patients with advanced cancer in China is rapidly increasing. People living with advanced cancer have multidimensional needs and concerns requiring person-centred care. As services and policy evolve, it is essential to improve the quality of care by measuring outcomes of importance to patients and families. However, little evidence exists on patients’ priorities of advanced cancer care in China, and there were no reliable and validated patient-reported outcome measures for use to measure the care needs and outcomes of patients with advanced cancers. The Integrated Palliative care Outcome Scale (IPOS) is a psychometrically sound and multidimensional measure that has been used worldwide for patients with advanced illnesses including cancer. IPOS is a brief and valid PROM that evaluates the most burdensome concerns and has been used with advanced cancer patients and adapted to many cultures.
Aim
To translate, cross-culturally adapt and validate the Chinese IPOS among adults with cancer.
Methods
Design
A sequential qualitative mixed-methods study was employed comprising a qualitative component followed by quantitative components. Rothrock guidance, COnsensus-based Standards for the selection of health status Measurement INstruments (COSMIN) and Palliative care Outcome Scale family of measures Manual for cross-cultural adaptation and psychometric validation guided the translation, cross-cultural adaptation and validation phases of the study.
Phase 1: A systematic review was conducted in accordance with COSMIN, with quality assessment using the Guidelines for the Process of Cross-Cultural Adaptation of Self-Report Measures and COSMIN quality criteria for measurement properties. MEDLINE, EMBASE, PsycINFO, CINAHL, CNKI and WanFang were systematically searched from inception to May 2019, updated to August 2022. Supplemental searches were conducted in grey literature databases, Google scholar and hand-searching of reference lists.
Phase 2: Semi-structured in-depth qualitative interviews with advanced cancer patients and family members at an inpatient oncology ward in China were conducted between October 2019 to January 2020. Data collection continued until thematic saturation was achieved. Interviews were audio-recorded, transcribed verbatim and analysed utilising thematic analysis.
Phase 3: Chinese versions of IPOS Patient and IPOS Staff were translated and culturally adapted following the Rothrock guidance and the Palliative care Outcome Scale family of measures Manual for cross-cultural adaptation and psychometric validation. Five phases were included: (I) Conceptual definition; (II) Forward translation (translation from English to Chinese); (III)Backward translation (translation from Chinese to English); (IV) Expert review; (V)Cognitive debriefing.
Phase 4: A multi-centre validation study was conducted to test the psychometric properties of the Chinese Integrated Palliative care Outcome Scale - both (1) patient self-report and (2) staff proxy-report versions. We tested construct validity (factor analysis and correlational analysis), reliability (internal consistency, test-retest reliability and inter-rater reliability), and responsiveness (through longitudinal evaluation of change).
Results
Phase 1: From 10793 articles, 437 were selected for full-text review based on titles and abstracts. A total of 46 studies reporting 39 PROMs were retained. No articles were rated as "good quality" in more than four of the six stages of cross-cultural adaptation. At least half of the required information on psychometric properties was missing for each measure. Based on COSMIN, none identified PROMs were valid across all properties nor appropriate to use.
Phase 2: Patients (n=20, median age 55.0, 60% female) and family members (n=20, median age 41.0, 45% female) described distinctive but highly interrelated concerns related to living with advanced cancer across five domains: (a) physical and psychological symptoms (e.g. pain and anxiety), (b) financial difficulties (e.g. debt and health insurance problems), (c) impacts on family (e.g. change of roles and burden on families), (d) coping and adapting to the disease (e.g. decision making and healthcare resource accessibility), and (e) plans to the future (e.g. attitudes toward dying and palliative care and unfulfilled wishes). A conceptual model showing the perspectives of patients and family members has been developed. Findings confirmed that advanced cancer has far-reaching implications for patients and family members in China, extending beyond physical and psychological problems into social (e.g., family issues), practical (e.g., financial difficulties and coping with cancer) needs and future plans.
Phase 3: One new item was developed, and changes were made, agreed upon by the expert review meeting. The comprehension and judgement difficulties identified in the pre-final patient and staff versions were successfully solved during the cognitive interviewing process. IPOS was well accepted by both patients and staff, none of the items in the Chinese versions of IPOS were inappropriate, and all questions was judged relevant and important.
Phase 4: Three hundred eight inpatient adults with advanced cancer were consecutively recruited from two medical oncology units in China. We confirm a three-factor structure (Physical Symptoms, Emotional Symptoms/Communication, and Practical Issues). Good convergent validity to hypothesised items and subscales of the Edmonton Symptom Assessment System is demonstrated. The Integrated Palliative care Outcome Scale shows good internal consistency (α = 0.83) and acceptable to good test-retest reliability (κw=0.59) and inter-rater reliability (κw=0.48). Longitudinal validity in the form of responsiveness to change is good.
Conclusion
This novel study translated and culturally adapted the patient and staff versions of IPOS and demonstrated content validity and acceptability of the scale through expert review and cognitive interviews with patients and staff. The Chinese Integrated Palliative care Outcome Scale is a reliable and valid outcome measure for use in patients with advanced cancer and available in both patient self-report and staff proxy-report versions. It is suitable for assessing needs, symptoms and concerns in advanced cancer, monitoring the change of health status over time, determining the impact of healthcare interventions, and demonstrating the quality of care.
| Date of Award | 1 Dec 2023 |
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| Original language | English |
| Awarding Institution |
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| Supervisor | Richard Harding (Supervisor), Charles Normand (Supervisor), Ping Guo (Supervisor) & Ping Guo (Supervisor) |