RESUMO
Receiving a positive result for a BRCA1/2 (BRCA) mutation - indicating a high lifetime risk to develop hereditary breast and ovarian cancer - can significantly alter a woman's identity. BRCA-positive women who have not been diagnosed with cancer may be labeled "previvors," which distinguishes those at-risk for developing cancer, but have not had cancer. Using semi-structured interviews (N = 25), this study explored how unaffected BRCA-positive women navigate the previvor identity. Women in this sample differed on their definitions of previvor, views of acceptance, rejection, or ambivalence toward the label, and identification as a previvor. Understanding how women interpret and embrace the previvor identity may help inform communication for those with BRCA genetic mutations, but whom have not been diagnosed with cancer.
Assuntos
Neoplasias da Mama , Neoplasias Ovarianas , Afeto , Proteína BRCA1/genética , Proteína BRCA2 , Neoplasias da Mama/genética , Comunicação , Feminino , Predisposição Genética para Doença , Testes Genéticos , Humanos , Mutação , Neoplasias Ovarianas/genéticaRESUMO
PROBLEM: Students eager to enter the medical field must develop perspective-taking skills that enhance their ability to connect with patients. Toward this goal, the authors developed a pilot workshop for undergraduate students that included an art activity during which they collaborated to design scalp tattoos to symbolize cancer patients' experiences with chemotherapy and hair loss. APPROACH: A 90-minute, arts-based workshop was held in April 2019. One author selected anonymous excerpts from previously conducted interviews with patients experiencing ovarian and uterine cancer. These excerpts were shared with students to humanize patients' perspectives and give context to the difficulty of coping with chemotherapy-induced alopecia. Students discussed these excerpts and images of scalp tattoos from the internet. Together, they then designed scalp tattoos representing their perspective on the experience of coping with chemotherapy and hair loss and drew them onto mannequin heads. OUTCOMES: Twenty members of the university community participated in this workshop, including 3 faculty members and 17 undergraduate students. Participants worked together to create 2 sets of scalp tattoos. Of the 20 participants, 75% (n = 15) responded to the postworkshop survey. All respondents were undergraduate students, and 73% (n = 11) reported an increase in empathy toward patients and 87% (n = 13) an increased connection with the patient experience. All respondents agreed that the art activity demonstrated the importance of taking the patient's perspective. NEXT STEPS: This arts-based workshop is effective and can be replicated for other audiences, including undergraduate students, medical students, and practicing clinicians, to encourage perspective-taking and compassion for patients. Further analysis of students' skill development using pre- and postworkshop data is needed.
Assuntos
Neoplasias , Estudantes de Medicina , Tatuagem , Alopecia/induzido quimicamente , Humanos , Neoplasias/tratamento farmacológico , Couro Cabeludo , Tatuagem/efeitos adversosRESUMO
A new patient satisfaction measure called the Radiation Oncology Patient Satisfaction (ROPS) questionnaire is used in this study to measure satisfaction data for radiation oncology in private practice. Limitations of existing literature on patient satisfaction demonstrated a need to develop a questionnaire that was more tailored to analyze patient satisfaction among those utilizing private oncology centers within the U.S. healthcare system. This need was met by this study's development of the ROPS questionnaire, which was a variation of 2 existing constructs that are presented in the text. The questionnaire was fielded among patients at a private cancer radiation treatment clinic in Florida (n = 950). Data analysis tested the psychometric properties of our revised construct and its predictive validity for 2 patient satisfaction outcomes: (1) likelihood of recommending this treatment center to family members/close friends and (2) overall satisfaction with treatment. Each of the ROPS variables were found to make a legitimate contribution to evaluating patients' overall satisfaction with radiation treatment. Findings indicated organizational setting was of vital importance when conducting patient- centered research on satisfaction. Treatment factors in ROPS can be adjusted to measure satisfaction with chemotherapy or other modalities in addition to radiation treatment. Authors recommend radiation oncology clinics regularly monitor patient satisfaction, especially if/when they experience organizational changes, such as when a new physician joins the practice or if/when the national or local landscape undergoes significant shifts in norms and expectations like we have seen happen with COVID-19.