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BMC Palliative Care
Published in: BMC Palliative Care 1/2018

Open Access 01-12-2018 | Research article

Development and validation of the quality care questionnaire –palliative care (QCQ-PC): patient-reported assessment of quality of palliative care

Authors: Young Ho Yun, Eun Kyo Kang, Jihye Lee, Jiyeon Choo, Hyewon Ryu, Hye-min Yun, Jung Hun Kang, Tae You Kim, Jin-Ah Sim, Yaeji Kim

Published in: BMC Palliative Care | Issue 1/2018

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Abstract

Background

In this study, we aimed to develop and validate an instrument that could be used by patients with cancer to evaluate their quality of palliative care.

Methods

Development of the questionnaire followed the four-phase process: item generation and reduction, construction, pilot testing, and field testing. Based on the literature, we constructed a list of items for the quality of palliative care from 104 quality care issues divided into 14 subscales. We constructed scales of 43 items that only the cancer patients were asked to answer. Using relevance and feasibility criteria and pilot testing, we developed a 44-item questionnaire. To assess the sensitivity and validity of the questionnaire, we recruited 220 patients over 18 years of age from three Korean hospitals.

Results

Factor analysis of the data and fit statistics process resulted in the 4-factor, 32-item Quality Care Questionnaire-Palliative Care (QCQ-PC), which covers appropriate communication with health care professionals (ten items), discussing value of life and goals of care (nine items), support and counseling for needs of holistic care (seven items), and accessibility and sustainability of care (six items). All subscales and total scores showed a high internal consistency (Cronbach alpha range, 0.89 to 0.97). Multi-trait scaling analysis showed good convergent (0.568–0.995) and discriminant (0.472–0.869) validity. The correlation between the total and subscale scores of QCQ-PC and those of EORTC QLQ-C15-PAL, MQOL, SAT-SF, and DCS was obtained.

Conclusion

This study demonstrates that the QCQ-PC can be adopted to assess the quality of care in patients with cancer.
Appendix
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Literature
1.
Greer JA, Jackson VA, Meier DE, Temel JS. Early integration of palliative care services with standard oncology care for patients with advanced cancer. CA Cancer J Clin. 2013;63(5):349–63.CrossRefPubMed
2.
Parikh RB, Kirch RA, Smith TJ, Temel JS. Early specialty palliative care—translating data in oncology into practice. N Engl J Med. 2013;369(24):2347–51.
3.
Ferrell BR, Temel JS, Temin S, Alesi ER, Balboni TA, Basch EM, Firn JI, Paice JA, Peppercorn JM, Phillips T. Integration of palliative care into standard oncology care: American Society of Clinical Oncology clinical practice guideline update. J Clin Oncol. 2017;35(1):96–112.
4.
5.
Temel JS, Greer JA, Muzikansky A, Gallagher ER, Admane S, Jackson VA, Dahlin CM, Blinderman CD, Jacobsen J, Pirl WF. Early palliative care for patients with metastatic non–small-cell lung cancer. N Engl J Med. 2010;363(8):733–42.CrossRefPubMed
6.
Zimmermann C, Swami N, Krzyzanowska M, Hannon B, Leighl N, Oza A, Moore M, Rydall A, Rodin G, Tannock I. Early palliative care for patients with advanced cancer: a cluster-randomised controlled trial. Lancet. 2014;383(9930):1721–30.CrossRefPubMed
7.
Temel JS, Greer JA, El-Jawahri A, Pirl WF, Park ER, Jackson VA, Back AL, Kamdar M, Jacobsen J, Chittenden EH. Effects of early integrated palliative care in patients with lung and GI cancer: a randomized clinical trial. J Clin Oncol. 2016;35(8):834–41.CrossRefPubMedPubMedCentral
8.
Bakitas MA, Tosteson TD, Li Z, Lyons KD, Hull JG, Li Z, Dionne-Odom JN, Frost J, Dragnev KH, Hegel MT. Early versus delayed initiation of concurrent palliative oncology care: patient outcomes in the ENABLE III randomized controlled trial. J Clin Oncol. 2015;33(13):1438–45.CrossRefPubMedPubMedCentral
9.
Brook RH, McGlynn EA, Shekelle PG. Defining and measuring quality of care: a perspective from US researchers. Int J Qual Health Care. 2000;12(4):281–95.CrossRefPubMed
10.
Yun YH, Kim S-H, Lee K-M, Park SM, Lee CG, Choi YS, Lee WS, Kim S-Y, Heo DS. Patient-reported assessment of quality care at end of life: development and validation of quality care questionnaire–end of life (QCQ–EOL). Eur J Cancer. 2006;42(14):2310–7.CrossRefPubMed
11.
Mayland CR, Williams EM, Ellershaw JE. Assessing quality of care for the dying: the development and initial validation of a postal self-completion questionnaire for bereaved relatives. Palliat Med. 2012;26(7):897–907.CrossRefPubMed
12.
Heckel M, Bussmann S, Stiel S, Weber M, Ostgathe C. Validation of the German version of the quality of dying and death questionnaire for informal caregivers (QODD-D-Ang). J Pain Symptom Manag. 2015;50(3):402–13.CrossRef
13.
Mayland CR, Lees C, Germain A, Jack BA, Cox TF, Mason SR, West A, Ellershaw JE. Caring for those who die at home: the use and validation of ‘care of the dying evaluation’(CODE) with bereaved relatives. BMJ Support Palliat Care. 2014;4(2):167–74.CrossRefPubMed
14.
Mystakidou K, Tsilika E, Kouloulias V, Parpa E, Katsouda E, Kouvaris J, Vlahos L. The" palliative care quality of life instrument (PQLI)" in terminal cancer patients. Health Qual Life Outcomes. 2004;2(1):8.CrossRefPubMedPubMedCentral
15.
Lo C, Burman D, Swami N, Gagliese L, Rodin G, Zimmermann C. Validation of the QUAL-EC for assessing quality of life in patients with advanced cancer. Eur J Cancer. 2011;47(4):554–60.CrossRefPubMed
16.
17.
Gonçalves F. Initial assessment of patients without cognitive failure admitted in palliative care. Am J Hosp Palliat Med. 2014;31(1):33–7.CrossRef
18.
Aslakson RA, Dy SM, Wilson RF, Waldfogel J, Zhang A, Isenberg SR, Blair A, Sixon J, Lorenz KA, Robinson KA. Patient- and Caregiver-Reported Assessment Tools for Palliative Care: Summary of the 2017 Agency for Healthcare Research and Quality Technical Brief. J Pain Symptom Manage. 2017;54(6):961–72. e916CrossRefPubMed
19.
Zhang L, Wang N, Zhang J, Liu J, Luo Z, Sun W, Woo SM-L, Chen C, Zhang K, Miller AR. Cross-cultural verification of the EORTC QLQ-C15-PAL questionnaire in mainland China. Palliat Med. 2016;30(4):401–8.CrossRefPubMed
20.
Hu L, Li J, Wang X, Payne S, Chen Y, Mei Q. Prior study of cross-cultural validation of McGill quality-of-life questionnaire in mainland mandarin Chinese patients with cancer. Am J Hosp Palliat Med. 2015;32(7):709–14.CrossRef
21.
Zeng L, Bedard G, Cella D, Thavarajah N, Chen E, Zhang L, Bennett M, Peckham K, De Costa S, Beaumont JL. Preliminary results of the generation of a shortened quality-of-life assessment for patients with advanced cancer: the FACIT-pal-14. J Palliat Med. 2013;16(5):509–15.CrossRefPubMed
22.
Henoch I, Axelsson B, Bergman B. The assessment of quality of life at the end of life (AQEL) questionnaire: a brief but comprehensive instrument for use in patients with cancer in palliative care. Qual Life Res. 2010;19(5):739–50.CrossRefPubMed
23.
Hearn J, Higginson I. Development and validation of a core outcome measure for palliative care: the palliative care outcome scale. Palliative care core audit project advisory group. Qual Saf Health Care. 1999;8(4):219–27.CrossRef
24.
Group EQoL: Guidelines for developing questionnaire modules. In.: European Organisation for Research and Treatment of Cancer (EORTC), Brussels; 2002.
25.
Hong S, You S. Developmental research: theory, method, design and statistical analysis. In: Handbook of complementary methods in education research; 2006. p. 207.
26.
Cochran WG. Sampling techniques. Chichester: Wiley; 2007.
27.
Fayers PM, Machin D. Quality of life: the assessment, analysis and interpretation of patient-reported outcomes. Chichester: Wiley; 2013.
28.
29.
Smith AB, Rush R, Fallowfield LJ, Velikova G, Sharpe M. Rasch fit statistics and sample size considerations for polytomous data. BMC Med Res Methodol. 2008;8(1):33.CrossRefPubMedPubMedCentral
30.
Shin DW, Choi JE, Miyashita M, Choi JY, Kang J, Baik YJ, Mo HN, Park J, Kim H-J, Park EC. Cross-cultural application of the Korean version of the european organization for research and treatment of cancer quality of life questionnaire-Core 15-palliative care. J Pain Symptom Manag. 2011;41(2):478–84.CrossRef
31.
Cohen SR, Mount BM, Tomas JJ, Mount LF. Existential well-being is an important determinant of quality of life: evidence from the McGill quality of life questionnaire. Cancer. 1996;77(3):576–86.CrossRefPubMed
32.
Yun YH, Jung JY, Sim JA, Choi H, Lee JM, Noh DY, Han W, Park KJ, Jeong SY, Park JW. Patient-reported assessment of self-management strategies of health in cancer patients: development and validation of the smart management strategy for health assessment tool (SAT). Psycho-Oncol. 2015;24(12):1723–30.CrossRef
33.
O'Connor AM. Validation of a decisional conflict scale. Med Decis Mak. 1995;15(1):25–30.CrossRef
Metadata
Title
Development and validation of the quality care questionnaire –palliative care (QCQ-PC): patient-reported assessment of quality of palliative care
Authors
Young Ho Yun
Eun Kyo Kang
Jihye Lee
Jiyeon Choo
Hyewon Ryu
Hye-min Yun
Jung Hun Kang
Tae You Kim
Jin-Ah Sim
Yaeji Kim
Publication date
01-12-2018
Publisher
BioMed Central
Published in
BMC Palliative Care / Issue 1/2018
Electronic ISSN: 1472-684X
DOI
https://doi.org/10.1186/s12904-018-0296-2

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