Ensuring a good death in individuals with advanced disease is a fundamental goal of palliative care. However, the lack of a validated patient-centered measure of quality of dying and death in advanced cancer has limited quality assessments of palliative-care interventions and outcomes.
Aim:
To examine item characteristics and the factor structure of the Quality of Dying and Death Questionnaire in advanced cancer.
Design:
Cross-sectional study with pooled samples.
Setting/participants:
Caregivers of deceased advanced-cancer patients (N = 602; mean ages = 56.39–62.23 years), pooled from three studies involving urban hospitals, a hospice, and a community care access center in Ontario, Canada, completed the Quality of Dying and Death Questionnaire 8–10 months after patient death.
Results:
Psychosocial and practical item ratings demonstrated negative skewness, suggesting positive perceptions; ratings of symptoms and function were poorer. Of four models evaluated using confirmatory factor analyses, a 20-item, four-factor model, derived through exploratory factor analysis and comprising Symptoms and Functioning, Preparation for Death, Spiritual Activities, and Acceptance of Dying, demonstrated good fit and internally consistent factors (Cronbach’s α = 0.70–0.83). Multiple regression analyses indicated that quality of dying was most strongly associated with Symptoms and Functioning and that quality of death was most strongly associated with Preparation for Death (p < 0.001).
Conclusion:
A new four-factor model best characterized quality of dying and death in advanced cancer as measured by the Quality of Dying and Death Questionnaire. Future research should examine the value of adding a connectedness factor and evaluate the sensitivity of the scale to detect intervention effects across factors.
HalesSZimmermannCRodinG.The quality of dying and death. Arch Intern Med2008; 168: 912–918.
2.
DySMHerrKBernackiRE, et al. Methodological research priorities in palliative care and hospice quality measurement. J Pain Symptom Manage2016; 51(2): 155–162.
3.
EtkindSNDavesonBAKwokW, et al. Capture, transfer, and feedback of patient-centered outcomes data in palliative care populations: does it make a difference? A systematic review. J Pain Symptom Manage2015; 49(3): 611–624.
4.
FraserBAPowellRAMwangi-PowellFN, et al. Palliative care development in Africa: lessons from Uganda and Kenya. J Global Oncol. Epub ahead of print 30June2017. DOI: 10.1200/JGO.2017.010090.
5.
McCaffreyNBradleySRatcliffeJ, et al. What aspects of quality of life are important from palliative care patients’ perspectives? A systematic review of qualitative research. J Pain Symptom Manage2016; 52(2): 318–328.e5.
6.
PowellRAHardingRNamisangoE, et al. Palliative care research in Africa: consensus building for a prioritized agenda. J Pain Symptom Manage2014; 47(2): 315–324.
7.
HalesSZimmermannCRodinG.The quality of dying and death: a systematic review of measures. Palliat Med2010; 24(2): 127–144.
8.
CurtisJRPatrickDLEngelbergRA, et al. A measure of the quality of dying and death: initial validation using after-death interviews with family members. J Pain Symptom Manage2002; 24(1): 17–31.
9.
PatrickDLEngelbergRACurtisJR.Evaluating the quality of dying and death. J Pain Symptom Manage2001; 22(3): 717–726.
10.
CurtisJRNielsenELTreecePD, et al. Effect of a quality-improvement intervention on end-of-life care in the intensive care unit: a randomized trial. Am J Respir Crit Care Med2011; 183(3): 348–355.
11.
CurtisJRTreecePDNielsenEL, et al. Integrating palliative and critical care: evaluation of a quality-improvement intervention. Am J Respir Crit Care Med2008; 178(3): 269–275.
12.
GerritsenRTKoopmansMHofhuisJGM, et al. Comparing quality of dying and death perceived by family members and nurses for patients dying in US and Dutch ICUs. Chest2017; 151(2): 298–307.
13.
GlavanBJEngelbergRADowneyL, et al. Using the medical record to evaluate the quality of end-of-life care in the intensive care unit. Crit Care Med2008; 36(4): 1138–1146.
14.
KhandelwalNEngelbergRABenkeserDC, et al. End-of-life expenditure in the ICU and perceived quality of dying. Chest2014; 146(6): 1594–1603.
15.
KrossEKNielsenELCurtisJR, et al. Survey burden for family members surveyed about end-of-life care in the intensive care unit. J Pain Symptom Manage2012; 44(5): 671–680.
16.
Lewis-NewbyMCurtisJRMartinDP, et al. Measuring family satisfaction with care and quality of dying in the intensive care unit: does patient age matter?J Palliat Med2011; 14(12): 1284–1290.
17.
RamosKJDowneyLNielsenEL, et al. Using nurse ratings of physician communication in the ICU to identify potential targets for interventions to improve end-of-life care. J Palliat Med2016; 19(3): 292–299.
18.
DowneyLCurtisJRLaffertyWE, et al. The Quality of Dying and Death Questionnaire (QODD): empirical domains and theoretical perspectives. J Pain Symptom Manage2010; 39(1): 9–22.
19.
PatrickDLCurtisJREngelbergRA, et al. Measuring and improving the quality of dying and death. Ann Intern Med2003; 139(5Pt 2): 410–415.
20.
HeckelMBussmannSStielS, et al. Validation of the German version of the Quality of Dying and Death Questionnaire for informal caregivers (QODD-D-Ang). J Pain Symptom Manage2015; 50(3): 402–413.
21.
Pérez-CruzPEPadilla PérezOBonatiP, et al. Validation of the Spanish version of the Quality of Dying and Death Questionnaire (QODD-ESP) in a home-based cancer palliative care program and development of the QODD-ESP-12. J Pain Symptom Manage2017; 53(6): 1042–1049.e3.
22.
HalesSChiuAHusainA, et al. The quality of dying and death in cancer and its relationship to palliative care and place of death. J Pain Symptom Manage2014; 48(5): 839–851.
23.
CurtisJRDowneyLEngelbergRA.The Quality of Dying and Death: is it ready for use as an outcome measure. Chest2013; 143(2): 289–291.
24.
DowneyLEngelbergRACurtisJR, et al. Shared priorities for the end-of-life period. J Pain Symptom Manage2009; 37(2): 175–188.
25.
KimH-Y.Statistical notes for clinical researchers: assessing normal distribution (2) using skewness and kurtosis. Restor Dent Endod2013; 38(1): 52–54.
26.
TerweeCBBotSDMde BoerMR, et al. Quality criteria were proposed for measurement properties of health status questionnaires. J Clin Epidemiol2007; 60(1): 34–42.
27.
MyersTA.Goodbye, listwise deletion: presenting hot deck imputation as an easy and effective tool for handling missing data. Commun Method Meas2011; 5: 297–310.
28.
LiCH.Confirmatory factor analysis with ordinal data: comparing robust maximum likelihood and diagonally weighted least squares. Behav Res Methods2016; 48(3): 936–949.
FloraDBFlakeJK.The purpose and practice of exploratory and confirmatory factor analysis in psychological research: decisions for scale development and validation. Can J Behav Sci2017; 49: 78–88.
33.
FloydFJWidamanKF.Factor analysis in the development and refinement of clinical assessment instruments. Psychol Assessment1995; 7: 286–299.
34.
SchmittTA.Current methodological considerations in exploratory and confirmatory factor analysis. J Psychoeduc Assess2011; 29: 304–321.
MacCallumRCBrowneMWSugawaraHM.Power analysis and determination of sample size for covariance structure modeling. Psychol Methods1996; 1: 130–149.
37.
CheungWYBarmalaNZarinehbafS, et al. The association of physical and psychological symptom burden with time to death among palliative cancer outpatients. J Pain Symptom Manage2009; 37(3): 297–304.
38.
LeungK-KTsaiJ-SChengS-Y, et al. Can a good death and quality of life be achieved for patients with terminal cancer in a palliative care unit?J Palliat Med2010; 13(12): 1433–1438.
39.
SeowHBarberaLSutradharR, et al. Trajectory of performance status and symptom scores for patients with cancer during the last six months of life. J Clin Oncol2011; 29(9): 1151–1158.
40.
TeixeiraME.Self-transcendence: a concept analysis for nursing praxis. Holist Nurs Pract2008; 22(1): 25–31.
41.
BlackJ.What are patients’ priorities when facing the end of life? A critical review. Int J Palliat Nurs2011; 17(6): 294–300.
42.
EmanuelLLAlpertHRBaldwinDC, et al. What terminally ill patients care about: toward a validated construct of patients’ perspectives. J Palliat Med2000; 3(4): 419–431.
43.
LendonJPAhluwaliaSCWallingAM, et al. Measuring experience with end-of-life care: a systematic literature review. J Pain Symptom Manage2015; 49(5): 904–915.e1–e3.
44.
SteinhauserKEChristakisNAClippEC, et al. Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA2000; 284(19): 2476–2482.
45.
TangSTChangW-CChenJ-S, et al. Associations of prognostic awareness/acceptance with psychological distress, existential suffering, and quality of life in terminally ill cancer patients’ last year of life. Psychooncology2016; 25(4): 455–462.
46.
ThompsonGNChochinovHMWilsonKG, et al. Prognostic acceptance and the well-being of patients receiving palliative care for cancer. J Clin Oncol2009; 27(34): 5757–5762.
47.
Delgado-GuayMORodriguez-NunezADe la CruzV, et al. Advanced cancer patients’ reported wishes at the end of life: a randomized controlled trial. Support Care Cancer2016; 24(10): 4273–4281.
48.
ScottLOLawJMBrodeurDP, et al. Relationship with God, loneliness, anger and symptom distress in patients with cancer who are near the end of life. J Hosp Palliat Nurs2014; 16(8): 482–488.
49.
ZhangBNilssonMEPrigersonHG.Factors important to patients’ quality of life at the end of life. Arch Intern Med2012; 172: 1133–1142.
50.
BalboniTABalboniMEnzingerAC, et al. Provision of spiritual support to patients with advanced cancer by religious communities and associations with medical care at the end of life. JAMA Intern Med2013; 173: 1109–1117.
51.
BalboniTAVanderwerkerLCBlockSD, et al. Religiousness and spiritual support among advanced cancer patients and associations with end-of-life treatment preferences and quality of life. J Clin Oncol2007; 25(5): 555–560.
52.
HalesSGaglieseLNissimR, et al. Understanding bereaved caregiver evaluations of the quality of dying and death: an application of cognitive interviewing methodology to the Quality of Dying and Death Questionnaire. J Pain Symptom Manage2012; 43(2): 195–204.
53.
HeylandDKDodekPRockerG, et al. What matters most in end-of-life care: perceptions of seriously ill patients and their family members. CMAJ2006; 174(5): 627–633.
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