Development of a Short Form of the Questionnaire Quality from the Patient’s Perspective for Palliative Care (QPP-PC)

References

• World Health Organization (WHO). The Solid Facts. Palliative Care. Geneva: World Health Organization (WHO); 2004.
   Google Scholar
• World Health Organization (WHO). Palliative Care for Older People: Better Practice. Copenhagen: World Health Organization (WHO); 2011.
   Google Scholar
• Lawrence RJ. Urban health challenges in Europe. J Urban Health. 2013;90(S1):23–36. doi:10.1007/s11524-012-9761-z
   Web of Science ®Google Scholar
• McIlfatrick S. Assessing palliative care needs: views of patients, informal carers and healthcare professionals. J Adv Nurs. 2007;57(1):77–86. doi:10.1111/j.1365-2648.2006.04062.x
   PubMed Web of Science ®Google Scholar
• Murray SA, Boyd K, Kendall M, Worth A, Benton TF, Clausen H. Dying of lung cancer or cardiac failure: prospective qualitative interview study of patients and their carers in the community. BMJ. 2002;325(7370):929–932. doi:10.1136/bmj.325.7370.929
   PubMed Web of Science ®Google Scholar
• Chamberlain-Salaun J, Mills J, Usher K. Terminology used to describe health care teams: an integrative review of the literature. J Multidiscip Healthc. 2013;6:65. doi:10.2147/JMDH.S40676
   PubMedGoogle Scholar
• European Association for Palliative Care (EAPC). White paper on standards and norms for hospice and palliative care in Europe: part 1. recommendations from the European association for palliative care. Eur J Palliat Care. 2009;16(6):278–289.
   Google Scholar
• World Health Organization (WHO). WHO definition of palliative care. Available from: https://www.who.int/cancer/palliative/definition/en/. Accessed March 28, 2020.
   Google Scholar
• Sandsdalen T, Hov R, Høye S, Rystedt I, Wilde-Larsson B. Patients’ preferences in palliative care: a systematic mixed studies review. Palliat Med. 2015;29(5):399–419. doi:10.1177/0269216314557882
   PubMed Web of Science ®Google Scholar
• McCormack B, Dewing J, Breslin L, et al. The implementation of a model of person-centred practice in older person settings. Final Report, Office of the Nursing Services Director, Health Services Executive, Dublin, Ireland. 2010
   Google Scholar
• McCormack B, Dewing J, Mccance T. Developing person-centred care: addressing contextual challenges through practice development. Online J Issues Nurs. 2011;16(2):Manuscript 3.
   Google Scholar
• Kaasa S, Jordhøy MS, Haugen DF. Palliative care in Norway: a national public health model. J Pain Symptom Manage. 2007;33(5):599–604. doi:10.1016/j.jpainsymman.2007.02.011
   Web of Science ®Google Scholar
• World Health Organization (WHO). Quality of Care: A Process for Making Strategic Choices in Health Systems. Geneva: WHO; 2006.
   Google Scholar
• Grande G. Palliative care in hospice and hospital: time to put the spotlight on neglected areas of research. Palliat Med. 2009;23(3):187–189. doi:10.1177/0269216309102697
   Web of Science ®Google Scholar
• Singer PA, Martin DK, Kelner M. Quality end-of-life care: patients’ perspectives. J Am Med Assoc. 1999;281(2):163–168. doi:10.1001/jama.281.2.163
   PubMed Web of Science ®Google Scholar
• Ministry of Health and Care Services. God kvalitet - Trygge tjenester - Kvalitet og pasientsikkerhet i helse- og omsorgstjenesten. Melding til stortinget nr. 10. [High Quality - Safe Services - Quality and Patient safety in the Health and Care Services. Report to the Storting (Norwegian Parliament) no. 10]. Oslo: Helse- og omsorgsdepartementet; 2012–2013. Norwegian.
   Google Scholar
• Donabedian A. The Definition of Quality and Approaches to Its Assessment. Vol. 1. Ann Arbor, Michigan: Health Administration Press; 1980.
   Google Scholar
• Departement of Health. Guidance on the Routine Collection of Patient Reported Outcome Measures (Proms). Departement of Health: London; 2008.
   Google Scholar
• Hodson M, Andrew S, Michael Roberts C. Towards an understanding of PREMS and PROMS in COPD. Breathe. 2013;9(5):358–364. doi:10.1183/20734735.006813
   Google Scholar
• Fitzpatrick R, Bowling A, Gibbons E. A Structured Review of Patient-Reported Measures in Relation to Selected Chronic Condition, Perceptions of Quality of Life and Carer Impact. University of Oxford and the Department of Health: London; 2009.
   Google Scholar
• Kristjanson LJ. Validity and reliability testing of the FAMCARE scale: measuring family satisfaction with advanced cancer care. Soc Sci Med. 1993;36(5):693–701. doi:10.1016/0277-9536(93)90066-D
   Web of Science ®Google Scholar
• Heyland DK, Cook DJ, Rocker GM, et al. The development and validation of a novel questionnaire to measure patient and family satisfaction with end-of-life care: the Canadian Health Care Evaluation Project (CANHELP) Questionnaire. Palliat Med. 2010;24(7):682–695. doi:10.1177/0269216310373168
   Web of Science ®Google Scholar
• Wilde B, Starrin B, Larsson G, Larsson M. Quality of care from a patient perspective: a grounded theory study. Scand J Caring Sci. 1993;7(2):113–120. doi:10.1111/j.1471-6712.1993.tb00180.x
   Google Scholar
• Wilde B, Larsson G, Larsson M, Starrin B. Quality of care: development of a patient-centered questionnaire based on a grounded theory model. Scand J Caring Sci. 1994;8(1):39–48. doi:10.1111/j.1471-6712.1994.tb00223.x
   Web of Science ®Google Scholar
• Larsson G, Wilde Larsson B, Munck IME. Refinement of the questionnaire ‘quality of care from the patient’s perspective’ using structural equation modelling. Scand J Caring Sci. 1998;12(2):111–118.
   Web of Science ®Google Scholar
• Wilde Larsson B, Larsson G. Development of a short form of the Quality from the Patient’s Perspective (QPP) questionnaire. J Clin Nurs. 2002;11(5):681–687. doi:10.1046/j.1365-2702.2002.00640.x
   PubMed Web of Science ®Google Scholar
• Holter H, A-K S-B, Gejervall A-L, Wikland M, Wilde-Larsson B, Bergh C. Quality of care in an IVF programme from a patient’s perspective: development of a validated instrument. Hum Reprod. 2014;29(3):534–547. doi:10.1093/humrep/det421
   Web of Science ®Google Scholar
• Wilde‐Larsson B, Larsson G, Kvist LJ, Sandin‐Bojö AK. Women's’ opinions on intrapartal care: development of a theory‐based questionnaire. J Clin Nurs. 2010;19(11‐12):1748–1760. doi:10.1111/j.1365-2702.2009.03055.x
   Web of Science ®Google Scholar
• Grøndahl VA, Kirchhoff JW, Andersen KL, et al. Health care quality from the patients’ perspective: a comparative study between an old and a new, high-tech hospital. J Multidiscip Healthc. 2018;11:591. doi:10.2147/JMDH.S176630
   PubMed Web of Science ®Google Scholar
• Sawyer A, Ayers S, Abbott J, Gyte G, Rabe H, Duley L. Measures of satisfaction with care during labour and birth: a comparative review. BMC Pregnancy Childbirth. 2013;13:108. doi:10.1186/1471-2393-13-108
   PubMed Web of Science ®Google Scholar
• Beattie M, Murphy DJ, Atherton I, Lauder W. Instruments to measure patient experience of healthcare quality in hospitals: a systematic review. Syst Rev. 2015;4(1):97. doi:10.1186/s13643-015-0089-0
   PubMedGoogle Scholar
• Sandsdalen T, Rystedt I, Grøndahl VA, Hov R, Høye S, Wilde-Larsson B. Patients’ perceptions of palliative care: adaptation of the Quality from the Patient’s Perspective instrument for use in palliative care, and description of patients’ perceptions of care received. BMC Palliat Care. 2015;14:54. doi:10.1186/s12904-015-0049-4
   Web of Science ®Google Scholar
• Prognostic Indicator Guidance (PIG). The Gold Standards Framework Centre in End of Life Care. 4th ed; 2011. Available from http://www.goldstandardsframework.org.uk/cd-content/uploads/files/General%20Files/Prognostic%20Indicator%20Guidance%20October%202011.pdf. Accessed 15 January, 2020.
   Google Scholar
• Sandsdalen T, Grøndahl VA, Hov R, Høye S, Rystedt I, Wilde-Larsson B. Patients’ perceptions of palliative care quality in hospice inpatient care, hospice day care, palliative units in nursing homes, and home care: a cross-sectional study. BMC Palliat Care. 2016;15(1):79. doi:10.1186/s12904-016-0152-1
   PubMed Web of Science ®Google Scholar
• Sandsdalen T, Wilde-Larsson B, Abrahamsen Grøndahl V. Patients’ perceptions of the quality of palliative care and satisfaction – A cluster analysis. J Multidiscip Healthc. 2019;12:903–915. doi:10.2147/JMDH.S220656
   Web of Science ®Google Scholar
• Watanabe SM, Nekolaichuk C, Beaumont C, Johnson L, Myers J, Strasser F. A multicenter study comparing two numerical versions of the Edmonton Symptom Assessment System in palliative care patients. J Pain Symptom Manage. 2011;41(2):456–468. doi:10.1016/j.jpainsymman.2010.04.020
   PubMed Web of Science ®Google Scholar
• Bruera E, Kuehn N, Miller MJ, Selmser P, Macmillan K. The Edmonton Symptom Assessment System (ESAS): a simple method for the assessment of palliative care patients. J Palliat Care. 1991;7(2):6–9. doi:10.1177/082585979100700202
   PubMedGoogle Scholar
• Goetz C, Coste J, Lemetayer F, et al. Item reduction based on rigorous methodological guidelines is necessary to maintain validity when shortening composite measurement scales. J Clin Epidemiol. 2013;66(7):710–718. doi:10.1016/j.jclinepi.2012.12.015
   PubMed Web of Science ®Google Scholar
• Hair JF, Black WC, Babin BJ, Anderson RE. Confirmatory factor analysis. In: Hair JF, Black WC, Babin BJ, Anderson RE, editors. Multivariate Data Analysis. 7th ed. ed. Harlow: Pearson; 2014.
   Google Scholar
• Field A. Discovering Statistics Using IBM SPSS Statistics. 5th ed ed. Los Angeles: Sage; 2018.
   Google Scholar
• Claessen SJ, Francke AL, Sixma HJ, de Veer AJ, Deliens L. Measuring patients’ experiences with palliative care: the Consumer Quality Index Palliative Care. BMJ Support Palliat Care. 2012;2(4):367–372. doi:10.1136/bmjspcare-2011-000055
   Google Scholar
• Polit DF, Beck CT. Nursing Research: Generating and Assessing Evidence for Nursing Practice. 4th ed ed. Philadelphia, PA: Wolters Kluwer Health; 2014.
   Google Scholar
• Chen F, Curran PJ, Bollen KA, Kirby J, Paxton P. An empirical evaluation of the use of fixed cutoff points in RMSEA test statistic in structural equation models. Social Methods Res. 2008;36(4):462–494. doi:10.1177/0049124108314720
   PubMed Web of Science ®Google Scholar
• Grøndahl VA, Karlsson I, Hall-Lord ML, Appelgren J, Wilde-Larsson B. Quality of care from patients’ perspective: impact of the combination of person-related and external objective care conditions. J Clin Nurs. 2011;20(17–18):2540–2551. doi:10.1111/j.1365-2702.2011.03810.x
   Web of Science ®Google Scholar
• Ventura AD, Burney S, Brooker J, Fletcher J, Ricciardelli L. Home-based palliative care: a systematic literature review of the self-reported unmet needs of patients and carers. Palliat Med. 2014;28(5):391–402. doi:10.1177/0269216313511141
   PubMed Web of Science ®Google Scholar
• Robinson J, Gott M, Ingleton C. Patient and family experiences of palliative care in hospital: what do we know? An integrative review. Palliat Med. 2013;28(1):18–33. doi:10.1177/0269216313487568
   Web of Science ®Google Scholar
• Virdun C, Luckett T, Davidson PM, Phillips J. Dying in the hospital setting: a systematic review of quantitative studies identifying the elements of end-of-life care that patients and their families rank as being most important. Palliat Med. 2015;29(9):774–796. doi:10.1177/0269216315583032
   PubMed Web of Science ®Google Scholar
• Institute of Medicine. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington DC: National Academy Press; 2001.
   Google Scholar
• Kvåle K, Bondevik M. What is important for patient centred care? A qualitative study about the perceptions of patients with cancer. Scand J Caring Sci. 2008;22(4):582–589. doi:10.1111/j.1471-6712.2007.00579.x
   PubMed Web of Science ®Google Scholar
• Ternestedt B-M, Andershed B, Eriksson M, Johansson I. A good death: development of a nursing model of care. J Hosp Palliat Nurs. 2002;4(3):153–160. doi:10.1097/00129191-200207000-00015
   Google Scholar