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Unmet Needs Related to the Quality of Life of Advanced Cancer Patients In Pyo et al. BMC Palliative Care (2021) 20:58 https://doi.org/10.1186/s12904-021-00749-8 RESEARCH ARTICLE Open Access Unmet needs related to the quality of life of advanced cancer patients in Korea: a qualitative study Jeehee Pyo1,2, Minsu Ock1*, Mina Lee1, Juhee Kim3, Jaekyung Cheon3, Juhee Cho4, Jung Hye Kwon5, Hyeyeoung Kim3, Hyeon-Su Im3, Young Joo Min3 and Su-Jin Koh3* Abstract Background: It has recently been emphasized that the unmet needs of cancer patients should be evaluated more holistically, for example, by exploring caregivers’ perspectives and cross cultural differences. This study explored additional domains or items of unmet needs among Korean cancer patients in reference to the Sheffield Profile for Assessment and Referral to Care (SPARC). Methods: We conducted four focus group discussions (FGDs) with 15 cancer patients, following a semi-structured format to elicit participants’ health perceptions, comments on SPARC, and opinions on the roles of medical professionals to improve the health-related quality of life of cancer patients. We analyzed the verbatim transcripts using a content analysis method. Results: The following themes were derived: living as a cancer patient, striving to overcome cancer, changing attitudes toward life after the cancer diagnosis, and ways to live a better life as a cancer patient. The participants asserted the significance of providing adequate treatment information that is easily understood by cancer patients during the conversation between patients and medical professionals. Besides the physical symptoms identified by SPARC, the participants struggled with numbness in their hands and feet and hair loss. Korean cancer patients prominently wished to avoid burdening their family or others in their daily life. They considered the improvement of health behaviors, such as diet and exercise, as part of the treatment, which was not limited to drugs. Furthermore, it was essential to evaluate the value of cancer patients’ lives, as they desired to be helpful members of their families and society. Conclusions: This study identified additional domains and items of unmet needs of Korean cancer patients and broadened the understanding of unmet needs among cancer patients. Keywords: Health services needs and demand, Health-related quality of life, Patient satisfaction, Qualitative research * Correspondence: [email protected]; [email protected] 1Department of Preventive Medicine, Ulsan University Hospital, University of Ulsan College of Medicine, 877 Bangeojinsunhwando-ro, Dong-gu, Ulsan 44033, Republic of Korea 3Department of Hematology and Oncology, Ulsan University Hospital, University of Ulsan College of Medicine, 877 Bangeojinsunhwando-ro, Dong-gu, Ulsan 44033, Republic of Korea Full list of author information is available at the end of the article © The Author(s). 2021 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data. Pyo et al. BMC Palliative Care (2021) 20:58 Page 2 of 12 Background cancer patients in Asian countries by utilizing the SPAR The increasing cancer incidence and prevalence have C widely used in Western countries. This may expand generated substantial strain not only in Korea but also our in-depth understanding of cultural and social differ- worldwide [1, 2]. Thus, it is imperative to take measures ences in the assessment of unmet needs of cancer pa- to reduce the physical, mental, and economic burden of tients and provide the attention points of cultural and cancer [3–5]. The first step to improve the health- social differences in interpreting the results. related quality of life of cancer patients and lower the cancer mortality rate involves assessing the unmet needs Methods of cancer patients [6]. Such an assessment not only is The purpose of the study was to examine the unmet necessary to satisfy the unmet needs of cancer patients needs of Korean cancer patients undergoing chemother- in general but could also be beneficial to establish strat- apy and to understand the implications for comprehen- egies to better identify Korean cancer patients’ unmet sively assessing and comparing such needs. Specifically, needs. we conducted focus group discussions (FGDs) with can- Various tools have been developed and applied to as- cer patients to induce dynamism through the interaction sess the unmet needs of cancer patients [7–9]. It has re- between participants, leading to a variety of responses cently been emphasized that unmet needs should be [15]. The specific research methods used for the FGDs evaluated more holistically, for example, by exploring followed the Consolidated Criteria for Reporting Quali- caregivers’ perspectives and cross cultural differences [9, tative Research (COREQ) [16]. 10]. In particular, the majority of assessment tools for the unmet needs of cancer patients were developed in Research team composition specific cultures, mainly Western. Thus, it is expected The research team consisted of a total of seven mem- that analyzing the current status of unmet needs of can- bers: three members in the analysis team and four in the cer patients in Eastern countries, such as Korea, and supervision team. The analysis team included one pre- comparing it with other countries will expand our un- ventive medicine specialist, one preventive medicine re- derstanding of unmet needs of cancer patients. searcher, and one nurse with 11 years of clinical An assessment tool for the needs of cancer patients experience. Two of the members had written disserta- was previously developed with a rigorous methodology tions applying qualitative methodology, such as Consen- in Korea [11], but its utilization rate has been mediocre. sual Qualitative Research and case study, and lectured One reason for the low utilization rate of that tool was on such methods. The other had extensive experience in that social interest in the unmet needs of cancer patients qualitative research execution. The supervision team for remains low; thus, it is essential to increase social inter- research consisted of three specialists in hematology and est by conducting more diverse studies on the current a professor dedicated to education at the S Hospital status of such needs and their assessment. Qualitative Cancer Center. methodology is considered to be more useful for acquir- ing an in-depth understanding of the unmet needs of Research participants cancer patients than are quantitative methods. Some Typical case sampling was used to recruit participants, qualitative studies on the issue have been published in as it involves selecting the most “average” individuals Korea [4, 5, 12]. While these studies have deepened the with experience in the topic of interest [17]. The partici- apprehension of the unmet needs of cancer patients in pation selection criteria for the study were cancer pa- Korea, it would be practical to establish a framework to tients who were currently undergoing chemotherapy. compare the domains of such unmet needs between We selected cancer patients undergoing chemotherapy countries in different cultures. because we considered them to have diverse unmet Thus, this study examined the unmet needs of Korean needs compared to cancer patients receiving other treat- cancer patients using qualitative methodology to identify ments [11]. The research nurse contacted eligible pa- additional domains or items of unmet needs in reference tients for inclusion in August 2019 at the outpatient of to the assessment domains of the Sheffield Profile for cancer center and gave a written explanation of the pur- Assessment and Referral to Care (SPARC) [13], and ex- pose and contents of the study. A total of 15 patients plored the implications of the findings for the assess- voluntarily agreed to participate in the study. The partic- ment of unmet needs of cancer patients. SPARC was ipants were also informed that they could withdraw from chosen in this study because it consists of a greater var- the study freely, but none did. iety of domains for measuring unmet needs of cancer patients compared to other assessment tools [9, 14]. Focus group discussions Moreover, we were able to identify domains or items Group interviews, such as FGDs, have the advantage of that can be overlooked when evaluating unmet needs for providing a wide variety of responses because of Pyo et al. BMC Palliative Care (2021) 20:58 Page 3 of 12 participant dynamics that could be absent in individual supervision team reviewed the results based on the interviews [15]. Conversely, they have the disadvantage framework of categories. of being limited in
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