RESUMEN
OBJECTIVES: Women with ovarian cancer can have long overall survival and goals of treatment change over time from cure to remission to stable disease. We sought to determine whether survivors' acceptance of treatment side effects also changes over the disease continuum. METHODS: Women with ovarian cancer completed an online survey focusing on survivors' goals and priorities. The survey was distributed through survivor networks and social media. RESULTS: Four hundred and thirty-four women visited the survey website and 328 (76%) completed the survey. Among participants, 141 (43%) identified themselves as having ever recurred, 119 (36%) were undergoing treatment at the time of survey completion and 86 (26%) had received four or more chemotherapy regimens. Respondents' goals of care were cure for 115 women (35%), remission for 156 (48%) and stable disease for 56 (17%). When asked what was most meaningful, 148 women (45%) reported overall survival, 135 (41%) reported quality of life and 40 (12%) reported progression-free survival. >50% of survivors were willing to tolerate the following symptoms for the goal of cure: fatigue (283, 86%), alopecia (281, 86%), diarrhea (232, 71%), constipation (227, 69%), neuropathy (218, 66%), arthralgia (210, 64%), sexual side effects (201, 61%), reflux symptoms (188, 57%), memory loss (180, 55%), nausea/vomiting (180, 55%), hospitalization for treatment side effects (179, 55%) and pain (169, 52%). The rates of tolerance for most symptoms decreased significantly as the goal of treatment changed from cure to remission to stable disease. CONCLUSIONS: Women with ovarian cancer willingly accept many treatment side effects when the goal of treatment is cure, however become less accepting when the goal is remission and even less so when the goal is stable disease. Physicians and survivors must carefully consider treatment toxicities and quality of life effects when selecting drugs for patients with incurable disease.
Asunto(s)
Antineoplásicos/efectos adversos , Actitud Frente a la Salud , Efectos Colaterales y Reacciones Adversas Relacionados con Medicamentos/psicología , Recurrencia Local de Neoplasia/tratamiento farmacológico , Neoplasias Ováricas/tratamiento farmacológico , Planificación de Atención al Paciente , Calidad de Vida , Sobrevivientes/psicología , Adolescente , Adulto , Anciano , Alopecia/inducido químicamente , Alopecia/psicología , Artralgia/inducido químicamente , Artralgia/psicología , Estreñimiento/inducido químicamente , Estreñimiento/psicología , Diarrea/inducido químicamente , Diarrea/psicología , Efectos Colaterales y Reacciones Adversas Relacionados con Medicamentos/etiología , Fatiga/inducido químicamente , Fatiga/psicología , Femenino , Reflujo Gastroesofágico/inducido químicamente , Reflujo Gastroesofágico/psicología , Hospitalización , Humanos , Trastornos de la Memoria/inducido químicamente , Trastornos de la Memoria/psicología , Persona de Mediana Edad , Náusea/inducido químicamente , Náusea/psicología , Recurrencia Local de Neoplasia/psicología , Estadificación de Neoplasias , Neoplasias Ováricas/patología , Neoplasias Ováricas/psicología , Dolor/inducido químicamente , Dolor/psicología , Enfermedades del Sistema Nervioso Periférico/inducido químicamente , Enfermedades del Sistema Nervioso Periférico/psicología , Inducción de Remisión , Disfunciones Sexuales Fisiológicas/inducido químicamente , Disfunciones Sexuales Fisiológicas/psicología , Encuestas y Cuestionarios , Vómitos/inducido químicamente , Vómitos/psicología , Adulto JovenRESUMEN
PURPOSE: Women with ovarian cancer identify patient-physician communication as an essential element in determining treatment course and believe a discussion about goals and values should precede treatment decisions. We sought to develop a patient-centered priorities assessment tool for women with ovarian cancer that could streamline communication, enhance treatment discussions, and increase patient satisfaction. MATERIALS AND METHODS: We designed a priorities assessment tool using a validated ovarian cancer symptom index (National Comprehensive Cancer Center-Functional Assessment of Cancer Therapy Ovarian Symptom Index-18) combined with an index to assess daily quality-of-life priorities. The tool was distributed to women with ovarian cancer in small focus group settings and online, followed by a postactivity feedback form. RESULTS: In this pilot study, 36 women completed the priorities assessment tool and 35 completed the postactivity feedback form between September 2015 and May 2016. All participants reported that the tool was easy to understand and comprehensive in scope. Twenty-nine participants (82.9%) completed the tool in 10 minutes or less. Most participants (n = 31, 86.1%) were able to stratify their priorities and identify 5 top treatment-related priorities. Participants who indicated that their goals and priorities had changed since diagnosis (n = 25, 69.4%) reported that the tool helped to identify current goals and priorities (22 [88%] of 25 participants) and would help them feel more comfortable participating in shared decision making with their medical team (21 [84%] of 25 participants). CONCLUSION: A patient-centered priorities assessment tool was easy to complete and viewed as comprehensive and useful in a pilot cohort of women with ovarian cancer. Use of a priorities assessment tool has the potential to enhance communication, promote shared decision making, and improve patient satisfaction.