The relationships of unmet needs with quality of life and characteristics of Indonesian gynecologic cancer survivors

Yati Afiyanti, Besral Besral, Haryani Haryani, Ariesta Milanti, Lina Anisa Nasution, Kemala Rita Wahidi, Dewi Gayatri

Abstract


Gynecologic cancer survivors’ complex needs are too often overlooked. This study aimed to identify the associations between unmet needs and quality of life, and selected characteristics of Indonesian gynecologic cancer survivors. This study was a cross-sectional, correlation study. A total of 298 participants completed the Cancer Survivor Unmet Needs (CaSUN), EORTC QLQ-C30, and demographic and clinical-related questionnaires. A higher level of unmet needs was linked to lower perceived quality of life. Higher levels of unmet needs were associated with younger age, lower income, higher educational background, shorter time since diagnosis, more advanced cancer stage, and having combination therapies (p < 0.05). The most frequently reported unmet need of the Indonesian gynecologic cancer survivors was financial support (70.5%). The gynecologic cancer survivors who had completed primary treatment need continuous comprehensive cancer care to help them cope with the lingering or emerging problems related to cancer and its treatment.


Full Text:

PDF

References


Aaronson, N. K., Ahmedzai, S., Bergman, B., Bullinger, M., Cull, A., Duez, N. J., … Takeda, F. (1993). The European Organisation for Research and Treatment of Cancer QLQ-C30: A quality-of-life instrument for use in international clinical trials in oncology. Journal of the National Cancer Institute, 85, 365–376. https://doi.org/10.1093/jnci/85.5.365

Agustina, R., Dartanto, T., Sitompul, R., Susiloretni, K. A., Suparmi, Achadi, E. L., … Khusun, H. (2019). Universal health coverage in Indonesia: concept, progress, and challenges. Lancet, 393(10166), 75–102. https://doi.org/10.1016/S0140-6736(18)31647-7

Altice, C. K., Banegas, M. P., Tucker-Seeley, R. D., & Yabroff, K. R. (2017). Financial hardships experienced by cancer survivors: A systematic review. Journal of the National Cancer Institute, 109(2), 1–17. https://doi.org/10.1093/jnci/djw205

Anggraeni, M., & Ekowati, W. (2011). Family role in the achievement of post radical mastectomy self integrity patients. International Journal of Public Health Research, 1, 163–168.

Armes, J., Crowe, M., Colbourne, L., Morgan, H., Murrells, T., Oakley, C., … Richardson, A. (2009). Patients’ supportive care needs beyond the end of cancer treatment: A prospective, longitudinal survey. Journal of Clinical Oncology, 27(36), 6172–6179. https://doi.org/10.1200/JCO.2009.22.5151

Bender, J. L., Wiljer, D., To, M. J., Bedard, P. L., Chung, P., Jewett, M. A. S., … Gospodarowicz, M. (2012). Testicular cancer survivors’ supportive care needs and use of online support: A cross-sectional survey. Supportive Care in Cancer, 20(11), 2737–2746. https://doi.org/10.1007/s00520-012-1395-x

Bray, F., Jacques, F., Isabelle, S., Rebecca L., S., Lindsey A., T., Ahmedin, J., & 1. (2018). Global Cancer Statistics 2018: GLOBOCAN Estimates of Incidence and Mortality Worldwide for 36 Cancers in 185 Countries. CA Cancer J Clin, 0, 1–31. https://doi.org/10.3322/caac.21492

Broom, A., Kenny, K., & Kirby, E. (2017). On waiting , hauntings and surviving : Chronicling life with cancer through solicited diaries. https://doi.org/10.1177/0038026117719216

Chang, O., Choi, E. K., Kim, I. R., Nam, S. J., Lee, J. E., Lee, S. K., … Cho, J. (2014). Association between socioeconomic status and altered appearance distress, body image, and quality of life among breast cancer patients. Asian Pacific Journal of Cancer Prevention. https://doi.org/10.7314/APJCP.2014.15.20.8607

DiMartino, L. D., Birken, S. A., & Mayer, D. K. (2017). The Relationship Between Cancer Survivors’ Socioeconomic Status and Reports of Follow-up Care Discussions with Providers. Journal of Cancer Education : The Official Journal of the American Association for Cancer Education, 32(4), 749–755. https://doi.org/10.1007/s13187-016-1024-3

Effendy, C., Vissers, K., Osse, B. H. P., Tejawinata, S., Vernooij-Dassen, M., & Engels, Y. (2014). Comparison of problems and unmet needs of patients with advanced cancer in a european country and an asian country. Pain Practice. https://doi.org/10.1111/papr.12196

Fitch, M. I. (2014). Supportive care framework: Theoretical underpinnings. In M. I. Fitch (Ed.), Supportive care framework: A foundation for person-centred care. Ontario: CANO/ACIO.

Fles, R., Bos, A. C. R. K., Supriyati, Rachmawati, D., Waliyanti, E., Tan, I. B., … Dewi, F. S. T. (2017). The role of Indonesian patients’ health behaviors in delaying the diagnosis of nasopharyngeal carcinoma. BMC Public Health. https://doi.org/10.1186/s12889-017-4429-y

Hastert, T. A., Young, G. S., Pennell, M. L., Padamsee, T., Zafar, S. Y., DeGraffinreid, C., … Paskett, E. D. (2018). Financial burden among older, long-term cancer survivors: Results from the LILAC study. Cancer Medicine, 7(9), 4261–4272. https://doi.org/10.1002/cam4.1671

Hodgkinson, K, Butow, P., Hunt, G. E., Pendlebury, S., Hobbs, K. M., Lo, S. K., & Wain, G. (2007a). The development and evaluation of a measure to assess cancer survivors’ unmet supportive care needs: The CaSUN (Cancer Survivors’ Unmet Needs measure). Psycho-Oncology, Vol. 16, pp. 796–804. https://doi.org/10.1002/pon.1137

Hodgkinson, K., Butow, P., Fuchs, A., Hunt, G. E., Stenlake, A., Hobbs, K. M., … Wain, G. (2007b). Long-term survival from gynecologic cancer: Psychosocial outcomes, supportive care needs and positive outcomes. Gynecologic Oncology, 104(2), 381–389. https://doi.org/10.1016/j.ygyno.2006.08.036

Kimman, M., Jan, S., Yip, C., Thabrany, H., Peters, S., Bhoo-Pathy, N., … Klinwimol, T. (2015). Catastrophic health expenditure and 12-month mortality associated with cancer in Southeast Asia: Results from a longitudinal study in eight countries. BMC Medicine.

Kimman, M. L., Jan, S., Peters, S. A. E., Yip, C. H., Ngelangel, C. A., Bhoo-Pathy, N., & Woodward, M. (2017). Health-related quality of life and psychological distress among cancer survivors in Southeast Asia: results from a longitudinal study in eight low- and middle-income countries. BMC Medicine, 15(1), 10. https://doi.org/10.1186/s12916-016-0768-2

Knobf, M. T., Ferrucci, L. M., Cartmel, B., Jones, B. A., Stevens, D., Smith, M., … Mowad, L. (2012). Needs assessment of cancer survivors in Connecticut. Journal of Cancer Survivorship, 6(1), 1–10. https://doi.org/10.1007/s11764-011-0198-2

Kristanti, M. S., Setiyarini, S., & Effendy, C. (2017). Enhancing the quality of life for palliative care cancer patients in Indonesia through family caregivers: a pilot study of basic skills training. BMC Palliative Care, 16(1), 4. https://doi.org/10.1186/s12904-016-0178-4

Ministry of Health Republic of Indonesia. (2015). Data and information on cancer situation (Data dan Informasi Kesehatan Situasi Penyakit Kanker). Buletin Kanker, 1(1), 1–5. https://doi.org/10.1007/s13398-014-0173-7.2

Ministry of Health Republic of Indonesia. Ministry of Health Decree number HK.01.07/MENKES/707/2018 concerning National Formularium. , (2019).

Ministry of Health Republic of Indonesia. (2019b). World Cancer Day 2019. Retrieved July 16, 2019, from http://www.depkes.go.id/article/view/19020100003/hari-kanker-sedunia-2019.html

Molassiotis, A., Yates, P., Li, Q., So, W., Pongthavornkamol, K., Pittayapan, P., … Si, S. Y. H. (2017). Mapping unmet supportive care needs, quality-of-life perceptions and current symptoms in cancer survivors across the Asia-Pacific region: Results from the International STEP Study. Annals of Oncology, 28(10), 2552–2558. https://doi.org/10.1093/annonc/mdx350

Molassiotis, A, Yates, P., Li, Q., So, W., Pongthavornkamol, K., Pittayapan, P., … Collaborators†, on behalf of the S. S. (2017). Mapping unmet supportive care needs, quality-of-life perceptions and current symptoms in cancer survivors across the Asia-Pacific region: results from the International STEP Study. Annals of Oncology, 28, 2552–2558. https://doi.org/10.1093/femsec/fix097

Molassiotis, Alex, Yates, P., Li, Q., So, W. K. W., Pongthavornkamol, K., Pittayapan, P., … Si, S. Y. H. (2017). Mapping unmet supportive care needs, quality-of-life perceptions and current symptoms in cancer survivors across the Asia-Pacific region: Results from the International STEP Study. Annals of Oncology, 28(10), 2552–2558. https://doi.org/10.1093/annonc/mdx350

National Cancer Institute. (2019). NCI Dictionary. Retrieved from https://www.cancer.gov/publications/dictionaries/cancer-terms/def/gynecologic-cancer

Nekhlyudov, L., Ganz, P. A., Arora, N. K., & Rowland, J. H. (2017). Going beyond being lost in transition: A decade of progress in cancer survivorship. Journal of Clinical Oncology, 35(18), 1978–1981. https://doi.org/10.1200/JCO.2016.72.1373

Niksic, M., Rachet, B., Warburton, F. G., Wardle, J., Ramirez, A. J., & Forbes, L. J. L. (2015). Cancer symptom awareness and barriers to symptomatic presentation in England--are we clear on cancer? British Journal of Cancer, 113(3), 533–542. https://doi.org/10.1038/bjc.2015.164

Pangestu, S., & Karnadi, E. B. (2018). Financial toxicity in Indonesian cancer patients & survivors : How it affects risk attitude. Cogent Medicine, 00(00), 1–17. https://doi.org/10.1080/2331205X.2018.1525887

Perwitasari, D. A., Atthobari, J., Dwiprahasto, I., Hakimi, M., Gelderblom, H., Putter, H., … Kaptein, A. A. (2011). Translation and validation of EORTC QLQ-C30 into Indonesian version for cancer patients in Indonesia. Japanese Journal of Clinical Oncology, 41(4), 519–529. https://doi.org/10.1093/jjco/hyq243

Putri, R. H., Afiyanti, Y., Ungsianik, T., & Milanti, A. (2017). Supportive care needs and quality of life of patients with gynecological cancer undergoing therapy. Enfermería Clínica, 27(Suppl. Part I), 222–226. https://doi.org/doi: 10.1016/S1130-8621(18)30072-X.

Rahman, M. M., Ahsan, M. A., Monalisa, N. N., & Rahman, K. (2014). Influence of socioeconomic status and BMI on the quality of life after mastectomy in Bangladeshi breast cancer patients in a public hospital. Japanese Journal of Clinical Oncology, 44(12), 1150–1157. https://doi.org/10.1093/jjco/hyu144

Ratain, M. J. (2009). Biomarkers and clinical care. AAAS/FDLI Colloquium, Personalized Medicine in an Era of Health Care Reform, Washington, DC.

Rosenberg, S. M., & Partridge, A. H. (2017). Looking back, moving forward: the evolution of cancer survivorship care. The Lancet Oncology, 18(1), 18–19. https://doi.org/10.1016/S1470-2045(16)30649-0

Salani, R., Khanna, N., Frimer, M., Bristow, R. E., & Chen, L. may. (2017). An update on post-treatment surveillance and diagnosis of recurrence in women with gynecologic malignancies: Society of Gynecologic Oncology (SGO) recommendations. Gynecologic Oncology, 146(1), 3–10. https://doi.org/10.1016/j.ygyno.2017.03.022

Schlumbrecht, M., Sun, C., Huang, M., Milbourne, A., & Bodurka, D. (2018). Gynecologic cancer survivor preferences for long-term surveillance. BMC Cancer, 18(1), 1–10. https://doi.org/10.1186/s12885-018-4313-x

Schmeler, K. M., Jhingran, A., Iyer, R. B., Sun, C. C., Eifel, P. J., Soliman, P. T., … Sood, A. K. (2010). Pelvic fractures after radiotherapy for cervical cancer. Cancer, 116(3), 625–630. https://doi.org/10.1002/cncr.24811

Shih, K. K., Folkert, M. R., Kollmeier, M. A., Abu-Rustum, N. R., Sonoda, Y., Leitao, M. M., … Alektiar, K. M. (2013). Pelvic insufficiency fractures in patients with cervical and endometrial cancer treated with postoperative pelvic radiation. Gynecologic Oncology, 128(3), 540–543. https://doi.org/10.1016/j.ygyno.2012.12.021

Sleight, A. G., Lyons, K. D., Vigen, C., Macdonald, H., & Clark, F. (2018). The association of health-related quality of life with unmet supportive care needs and sociodemographic factors in low-income Latina breast cancer survivors: a single-centre pilot study. Disability and Rehabilitation, 0(0), 1–6. https://doi.org/10.1080/09638288.2018.1485179

Smith, A., King, M., Butow, P., Luckett, T., Grimison, P., Toner, G., … Olver, I. (2013). The prevalence and correlates of supportive care needs in testicular cancer survivors: a cross-sectional study. Psychooncology, 22(11), 2557–2564. https://doi.org/10.1002/pon.3323

So, W. K. W., Chan, C. W. H., Choi, K. C., Wan, R. W. M., Mak, S. S. S., & Chair, S. Y. (2013). Perceived unmet needs and health-related quality of life of Chinese cancer survivors at 1 year after treatment. Cancer Nursing, Vol. 36, pp. E23–E32. https://doi.org/DOI: 10.1097/NCC.0b013e318263f28e Perceived

So, W. K. W., Ming, K. M., Chan, H. Y. L., Chow, K. C., Wan, R. W. M., Mak, S. S. S., … Chan, C. W. H. (2014). Quality of life and most prevalent unmet needs of Chinese breast cancer survivors at one year after cancer treatment. European Journal of Oncology Nursing, 18(3), 323–328. https://doi.org/10.1016/j.ejon.2014.03.002

Tangcharoensathien, V., Patcharanarumol, W., Ir, P., Aljunid, S., Mukti, A., & Akkhavong, K, et al. (2011). Health-financing reforms in southeast Asia: challenges in achieving universal coverage. The Lancet, 377, 863–73.

Urbaniec, O. A., Collins, K., Denson, L. A., & Whitford, H. S. (2011). Gynecological cancer survivors: Assessment of psychological distress and unmet supportive care needs. Journal of Psychosocial Oncology, Vol. 29, pp. 534–551. https://doi.org/DOI: 10.1080/07347332.2011.599829

Yabroff, K. R., Lawrence, W. F., Clauser, S., Davis, W. W., & Brown, M. L. (2004). Burden of illness in cancer survivors: findings from a population-based national sample. Journal of the National Cancer Institute, 96(17), 1322–1330. https://doi.org/10.1093/jnci/djh255


Refbacks

  • There are currently no refbacks.