Cancer care has been transformed with the advent of new personalized and targeted therapies, and the integration of specialist palliative care (PC). Comparatively little is understood about the patient experience in this modern context. This study aims to examine the experience of oncology patients receiving treatment at a tertiary care center.
Design, Settings, and Measurements:
We recruited patients with advanced solid cancer (N = 200) from medical oncology clinics of the Duke Cancer Institute. Participants completed the modified COMPASS questionnaire (mCOMPASS), assessing a broad range of topics including quality of life (QoL), quality of care (QoC), health care utilization, and preferences for treatment and decision making. We summarized responses descriptively and used regression models to examine associations between variables of interest.
Results:
The survey response rate was 56.1%. Patients unaware of their advanced cancer diagnosis (21.2%) reported better QoL than patients who were aware of their diagnosis (+2.667, 95% CI: −4.459,9.793, p < 0.05). Despite all having advanced cancer diagnoses, most participants did not receive PC services (85.0%) and approximately half (49.2%) reported having an advance care plan (ACP). Those receiving PC services had lower (worse) mean QoL scores (−11.32, 95% CI: −19.26, −3.39, p < 0.05). Those reporting prognostic awareness were more likely to have an ACP and have discussed their treatment preferences with family members (p < 0.05).
Conclusion:
Patients with advanced cancer undergoing treatment at a large tertiary cancer center exhibit high QoL and awareness of PC, but the underuse of PC services persists. The relationship between poor prognostic awareness and better QoL warrants further examination.
Di SanzoM, CipolloniL, BorroM, et al.Clinical applications of personalized medicine: A new paradigm and challenge. Curr Pharm Biotechnol, 2017; 18(3):194–203.
MiddletonMR, GrobJJ, AaronsonN, et al.Randomized phase III study of temozolomide versus dacarbazine in the treatment of patients with advanced metastatic malignant melanoma. J Clin Oncol, 2000; 18(1):158–166. https://pubmed.ncbi.nlm.nih.gov/10623706/
SmithTJ, TeminS, AlesiER, et al.American society of clinical oncology provisional clinical opinion: The integration of palliative care into standard oncology care. J Clin Oncol, 2012; 30(8):880–887. https://pubmed.ncbi.nlm.nih.gov/22312101/
8.
FerrellBR, TemelJS, TeminS, et al.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; doi: 10.1200/JCO.2016.70.1474
9.
ZimmermannC, SwamiN, KrzyzanowskaM, et al.Early palliative care for patients with advanced cancer: A cluster-randomised controlled trial. Lancet, 2014; 383(9930):1721–1730. https://pubmed.ncbi.nlm.nih.gov/24559581/
10.
BakitasMA, TostesonTD, LiZ, et al.Early versus delayed initiation of concurrent palliative oncology care: Patient outcomes in the ENABLE III randomized controlled trial. J Clin Oncol, 2015; 33(13):1438–1445.
11.
PozzarRA, WallJA, TavorminaA, et al.Experiences of patients with peritoneal carcinomatosis-related complex care needs and their caregivers. Gynecol Oncol, 2024; 181:68–75.
12.
SainiV, JaberT, ComoJD, et al.623. Exploring ‘slicer dicer’, an extraction tool in EPIC, for clinical and epidemiological analysis. Open Forum Infect Dis [Internet], 2021; 8(Supplement_1):S414–S415; doi: 10.1093/ofid/ofab466.821
HarrisPA, TaylorR, ThielkeR, et al.Research electronic data capture (REDCap)—A metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform, 2009; 42(2):377–381.
15.
TeoI, SinghR, MalhotraC, et al.Cost of Medical Care of Patients with Advanced Serious Illness in Singapore (COMPASS): Prospective cohort study protocol. BMC Cancer, 2018; 18(1):459–458. https://link.springer.com/articles/10.1186/s12885-018-4356-z
16.
CellaDF, TulskyDS, GrayG, et al.The functional assessment of cancer therapy scale: Development and validation of the general measure. J Clin Oncol, 1993; 11(3):570–579.
AyanianJZ, ZaslavskyAM, GuadagnoliE, et al.Patients’ perceptions of quality of care for colorectal cancer by race, ethnicity, and language. J Clin Oncol, 2005; 23(27):6576–6586.
21.
YunYH, KwonYC, LeeMK, et al.Experiences and attitudes of patients with terminal cancer and their family caregivers toward the disclosure of terminal illness. J Clin Oncol, 2010; 28(11):1950–1957.
HuiD, KimYJ, ParkJC, et al.Integration of oncology and palliative care: A systematic review. Oncologist, 2015; 20(1):77–83; doi: 10.1634/theoncologist.2014-0312
24.
HuiD, KimSH, RoquemoreJ, et al.Impact of timing and setting of palliative care referral on quality of end-of-life care in cancer patients. Cancer [Internet], 2014; 120(11):1743–1749. https://pubmed.ncbi.nlm.nih.gov/24967463/
25.
TemelJS, GreerJA, MuzikanskyA, et al.Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med, 2010; 363(8):733–742. https://pubmed.ncbi.nlm.nih.gov/20818875/
GlassAP, ChenLK, HwangE, et al.A cross-cultural comparison of hospice development in Japan, South Korea, and Taiwan. J Cross Cult Gerontol, 2010; 25(1):1–19.
31.
ChenCH, TangST, ChenCH. Meta-analysis of cultural differences in Western and Asian patient-perceived barriers to managing cancer pain. Palliat Med, 2012; 26(3):206–221.
32.
SinghA, LockeSC, WolfSP, et al.The relationship between emotional well-being and understanding of prognosis in patients with acute myeloid leukemia (AML). Support Care Cancer, 2022; 30(1):897–906. https://pubmed.ncbi.nlm.nih.gov/34401981/
33.
GuptaI, FinkelsteinEA, OzdemirS, MalhotraC. Changes in prognostic beliefs of patients with metastatic cancer and their association with changing health status. J Natl Compr Canc Netw, 2023; 21(10):1021–1028.e8. https://jnccn.org/view/journals/jnccn/21/10/article-p1021.xml
34.
SchenkerY, Crowley-MatokaM, DohanD, et al.Oncologist factors that influence referrals to subspecialty palliative care clinics. J Oncol Pract, 2014; 10(2):e37–e44; doi: 10.1200/JOP.2013.001130
35.
JohnsonCE, GirgisA, PaulCL, CurrowDC. Cancer specialists’ palliative care referral practices and perceptions: Results of a national survey. Palliat Med, 2008; 22(1):51–57; doi: 10.1177/0269216307085181
36.
BonaresM, LeLW, ZimmermannC, WentlandtK. Specialist palliative care referral practices among oncologists, cardiologists, respirologists: A comparison of national survey studies. J Pain Symptom Manage, 2023; 66(1):e1–e34.
37.
HuiD, CeranaMA, ParkM, et al.Impact of oncologists’ attitudes toward end-of-life care on patients’ access to palliative care. Oncologist, 2016; 21(9):1149–1155; doi: 10.1634/theoncologist.2016-0090
38.
SmithCB, PhillipsT, SmithTJ. Using the New ASCO clinical practice guideline for palliative care concurrent with oncology care using the TEAM approach. American Soci Clinical Oncol Educational Book [Internet], 2017(37):714–723. https://ascopubs.org/doi/10.1200/EDBK_175474
39.
KuipersSJ, CrammJM, NieboerAP. The importance of patient-centered care and co-creation of care for satisfaction with care and physical and social well-being of patients with multi-morbidity in the primary care setting. BMC Health Serv Res, 2019; 19(1):13–19. https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-018-3818-y
StreetRL, SpearsE, MadridS, MazorKM. Cancer survivors’ experiences with breakdowns in patient-centered communication. Psychooncology, 2019; 28(2):423–429; doi: 10.1002/pon.4963
42.
AlcornSR, BalboniMJ, PrigersonHG, et al.“If god wanted me yesterday, i wouldn’t be here today”: Religious and spiritual themes in patients’ experiences of advanced cancer. J Palliat Med, 2010; 13(5):581–588; doi: 10.1089/jpm.2009.0343
