591
Views
8
CrossRef citations to date
0
Altmetric
Original Research

Women Diagnosed with Ovarian Cancer: Patient and Carer Experiences and Perspectives

, ORCID Icon, ORCID Icon, ORCID Icon & ORCID Icon
Pages 33-43 | Published online: 16 Feb 2021

References

  • Doubeni CA, Doubeni ARB, Myers AE. Diagnosis and management of ovarian cancer. Am Fam Physician. 2016;93(11):937–944.
  • Natarajan P, Taylor SE, Kirwan JM. Ovarian cancer: current management and future directions. Obstetrics Gynaecology Reproduct Med. 2018;28(6):171–176. doi:10.1016/j.ogrm.2018.04.004
  • Henderson JT, Webber EM, Sawaya GF. Screening for ovarian cancer updated evidence report and systematic review for the US Preventive Services Task Force. JAMA. 2018;319(6):595–606. doi:10.1001/jama.2017.21421
  • Monk BJ, Anastasia PJ. Ovarian cancer: current treatment and patient management. J Adv Pract Oncol. 2016;7(3):271–273.
  • Chase DM, Wenzel L. Health-related quality of life in ovarian cancer patients and its impact on clinical management. Expert Rev Pharmacoecon Outcomes Res. 2011;11(4):421–431.
  • Post MWM. Definitions of quality of life: what has happened and how to move on. Top Spinal Cord Inj Rehabil. 2014;20(3):167–180.
  • Meadows KA. Patient-reported outcome measures: an overview. Br J Community Nurs. 2011;16(3):146–151.
  • Moss HA, Havrilesky LJ. The use of patient-reported outcome tools in Gynecologic Oncology research, clinical practice, and value-based care. Gynecol Oncol. 2018;148(1):12–18.
  • Trujols J, Portella MJ, Iraurgi I, Campins MJ, Siñol N, Cobos J. Patient-reported outcome measures: are they patient-generated, patient-centred or patient-valued? J Ment Health. 2013;22(6):555–562.
  • Staniszewska S, Adebajo A, Barber R, et al. Developing the evidence base of patient and public involvement in health and social care research: the case for measuring impact. Int J Consum Stud. 2011;35(6):628–632. doi:10.1111/j.1470-6431.2011.01020.x
  • Questionnaires. EORTC Quality of Life; 2019. Available from: https://qol.eortc.org/. Accessed April 29, 2020..
  • Questionnaires FACIT; 2019. Available from: https://www.facit.org/. 29, 2020.
  • King MT, Stockler MR, O’Connell RL, et al. Measuring what matters MOST: validation of the Measure of Ovarian Symptoms and Treatment, a patient-reported outcome measure of symptom burden and impact of chemotherapy in recurrent ovarian cancer. Qual Life Res. 2018;27(1):59–74. doi:10.1007/s11136-017-1729-8
  • Wiering BM, De Boer D, Delnoij D. Patient involvement in the development of patient-reported outcome measures: the developers’ perspective. BMC Health Serv Res. 2017;17(1):635. doi:10.1186/s12913-017-2582-8
  • Colorafi KJ, Evans B. Qualitative Descriptive Methods in Health Science Research. HERD. 2016;9(4):16–25. doi:10.1177/1937586715614171
  • Polit DF, Beck CT. Essentials of Nursing Research: Appraising Evidence for Nursing Practice. Philadelphia: Wolters Kluwer Health; 2018.
  • Willis GB. Cognitive Interviewing: A Tool for Improving Questionnaire Design. Thousand Oaks, Calif: Sage Publications; 2005.
  • Frey B, Vivo N. The SAGE Encyclopedia of Educational Research, Measurement, and Evaluation. Vols. 1–4. Thousand Oaks, California: SAGE Publications, Inc; 2018.
  • Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101. doi:10.1191/1478088706qp063oa
  • Fereday J, Muir-Cochrane E. Demonstrating rigor using thematic analysis: a hybrid approach of inductive and deductive coding and theme development. Int J Qual Methods. 2006;5(1):80–92. doi:10.1177/160940690600500107
  • Liamputtong P, Ezzy D. Qualitative Research Methods: A Health Focus. New York: Oxford University Press; 1999.
  • Freij M, Al Qadire M, Khadra M, et al. Awareness and knowledge of ovarian cancer symptoms and risk factors: a survey of jordanian women. Clin Nurs Res. 2018;27(7):826–840. doi:10.1177/1054773817704749
  • Brain KE, Smits S, Simon AE, et al. Ovarian cancer symptom awareness and anticipated delayed presentation in a population sample. BMC Cancer. 2014;14(1):171. doi:10.1186/1471-2407-14-171
  • Forbes LJL, Simon AE, Warburton F, et al. Differences in cancer awareness and beliefs between Australia, Canada, Denmark, Norway, Sweden and the UK (the International Cancer Benchmarking Partnership): do they contribute to differences in cancer survival? Br J Cancer. 2013;108(2):292–300. doi:10.1038/bjc.2012.542
  • Vandborg MP, Edwards K, Kragstrup J, Vedsted P, Hansen DG, Mogensen O. A new method for analyzing diagnostic delay in gynecological cancer. Int J Gynecol Cancer. 2012;22(5):712. doi:10.1097/IGC.0b013e31824c6d0e
  • Robinson KM, Christensen KB, Ottesen B, Krasnik A. Socio-demographic factors, comorbidity and diagnostic delay among women diagnosed with cervical, endometrial or ovarian cancer. Eur J Cancer Care. 2011;20(5):653–661. doi:10.1111/j.1365-2354.2011.01259.x
  • Puckett MC, Townsend JS, Gelb CA, et al. Ovarian cancer knowledge in women and providers following education with inside knowledge campaign materials. J Cancer Educ. 2018;33(6):1285–1293. doi:10.1007/s13187-017-1245-0
  • Friedlander ML, King MT. Patient-reported outcomes in ovarian cancer clinical trials. Ann Oncol. 2013;24(uppl_10):x64–x68. doi:10.1093/annonc/mdt474
  • Friedlander ML, Stockler M, O’Connell R, et al. Symptom burden and outcomes of patients with platinum resistant/refractory recurrent ovarian cancer: a reality check: results of stage 1 of the gynecologic cancer intergroup symptom benefit study. Int J Gynecol Cancer. 2014;24(5):857–864. doi:10.1097/IGC.0000000000000147
  • Wenzel L, Vergote I, Cella D. Quality of life in patients receiving treatment for gynecologic malignancies: special considerations for patient care. Int J Gynecol Obstet. 2003;83:211–229. doi:10.1016/S0020-7292(03)90123-8
  • La Rosa VL, Garzon S, Gullo G, et al. Fertility preservation in women affected by gynaecological cancer: the importance of an integrated gynaecological and psychological approach. Ecancermedicalscience. 2020;14:1035. doi:10.3332/ecancer.2020.1035
  • La Rosa VL, Shah M, Kahramanoglu I, et al. Quality of life and fertility preservation counseling for women with gynecological cancer: an integrated psychological and clinical perspective. J Psychosomatic Obstetrics Gynecol. 2020;41(2):86–92. doi:10.1080/0167482X.2019.1648424
  • Schulman-Green D, Ercolano E, Dowd M, Schwartz P, McCorkle R. Quality of life among women after surgery for ovarian cancer. Palliat Support Care. 2008;6(3):239–247. doi:10.1017/S1478951508000497
  • McCorkle R, Pasacreta J, Tang ST. The silent killer: psychological issues in ovarian cancer. Holist Nurs Pract. 2003;17(6):300–308. doi:10.1097/00004650-200311000-00005
  • Fitzmaurice C, Allen C, Barber RM, et al. Global, regional, and national cancer incidence, mortality, years of life lost, years lived with disability, and disability-adjusted life-years for 32 cancer groups, 1990 to 2015: a systematic analysis for the global burden of disease study. JAMA Oncol. 2017;3(4):524. doi:10.1001/jamaoncol.2016.5688
  • Greenhalgh J, Gooding K, Gibbons E, et al. How do patient reported outcome measures (PROMs) support clinician-patient communication and patient care? A realist synthesis. J Patient Rep Outcomes. 2018;2(1):1–28.
  • Howell D, Fitch MI, Deane KA. Impact of ovarian cancer perceived by women. Cancer Nurs. 2003;26(1):1–9.
  • Grzankowski KS, Carney M. Quality of life in ovarian cancer. Cancer Control. 2011;18(1):52–58.
  • Lavallee DC, Chenok KE, Love RM, et al. Incorporating patient-reported outcomes into health care to engage patients and enhance care. Health Aff. 2016;35(4):575–582.
  • Street RL. How clinician–patient communication contributes to health improvement: modeling pathways from talk to outcome. Patient Educ Couns. 2013;92:286–291.
  • Fischer OJ, Marguerie M, Brotto LA. Sexual function, quality of life, and experiences of women with ovarian cancer: a mixed-methods study. Sex Med. 2019;7(4):530–539.
  • Saini VD, Garcia-Armesto SMD, Klemperer DMD, et al. Drivers of poor medical care. Lancet. 2017;390(10090):178–190.
  • Elshaug AG, Rosenthal MB, Lavis JN, et al. Levers for addressing medical underuse and overuse: achieving high-value health care. Lancet. 2017;390(10090):191–202.
  • Oza AM, Matulonis UA, Malander S, et al. Quality of life in patients with recurrent ovarian cancer treated with niraparib versus placebo (ENGOT-OV16/NOVA): results from a double-blind, Phase 3, randomised controlled trial. Lancet Oncol. 2018;19(8):1117–1125.
  • Holliday CM, Morte M, Byrne JM, Holliday AT. experience and expectations of ovarian cancer patients in australia. J Oncol. 2018;2018:1–8.
  • Tsai L-Y, Tsai J-M, Tsay S-L. Life experiences and disease trajectories in women coexisting with ovarian cancer. Taiwan J Obstet Gynecol. 2020;59(1):115–119.
  • Iżycki D, Woźniak K, Iżycka N. Consequences of gynecological cancer in patients and their partners from the sexual and psychological perspective. Prz Menopauzalny. 2016;15(2):112–116.
  • Gilbert E, Ussher JM, Hawkins Y. Accounts of disruptions to sexuality following cancer: the perspective of informal carers who are partners of a person with cancer. Health. 2009;13(5):523–541.
  • Bhugwandass CS, Pijnenborg JMA, Pijlman B, Ezendam NPM. Effect of chemotherapy on health-related quality of life among early-stage ovarian cancer survivors: a study from the population-based PROFILES registry. Curr Oncol. 2016;23(6):e556–e562.
  • von Gruenigen VE, Huang HQ, Gil KM, et al. Assessment of factors that contribute to decreased quality of life in Gynecologic Oncology Group ovarian cancer trials. Cancer. 2009;115(20):4857–4864.
  • Wen Q, Shao Z, Zhang P, Zhu T, Li D, Wang S. Mental distress, quality of life and social support in recurrent ovarian cancer patients during active chemotherapy. Eur J Obstet Gynecol Reprod Biol. 2017;216:85–91.
  • Rose SL, Spencer RJ, Rausch MM. The use of humor in patients with recurrent ovarian cancer: a phenomenological study. Int J Gynecol Cancer. 2013;23(4):775.
  • Tsai L-Y, Wang K-L, Liang S-Y, Tsai J-M, Tsay S-L. The lived experience of gynecologic cancer survivors in Taiwan. J Nurs Res. 2017;25(6):447–454.
  • Schulman‐Green D, Jaser S, Martin F, et al. Processes of self‐management in chronic illness. J Nurs Scholarsh. 2012;44(2):136–144.
  • Australia DoHW. Western Australian Cancer Registry Statistics; 2017. Available from: https://ww2.health.wa.gov.au/Articles/U_Z/Western-Australian-Cancer-Registry-Statistics. Accessed September 30, 2020.
  • Malterud K, Siersma VD, Guassora AD. Sample size in qualitative interview studies: guided by information power. Qual Health Res. 2016;26(13):1753–1760.
  • Mason M. Sample size and saturation in PhD studies using qualitative interviews. FQS. 2010;11(3):1–19.