The Red Door Community

PurposeIndividuals diagnosed with cancer have extensive and often unmet psychosocial support needs. We established a partnership between the University of Minnesota and Gilda's Club to identify survivorship issues, unmet psychosocial support needs, and barriers to receiving cancer support in rural Minnesota.MethodsWe conducted six focus groups and 16 interviews (41 total participants) between November 2022 and January 2024 among cancer survivors living in rural Minnesota. Structured interview guides included questions about survivors’ definition of cancer support, what community support is desired and available, and barriers to obtaining support. Transcripts were analyzed using inductive thematic analysis.FindingsThe mean participant age was 57.1 ± 13.4 years; the majority were female (68%), non‐Hispanic White (95%), and college graduates (58%), and they represented many cancer diagnoses, with hematologic (20%) and breast cancers (17%) most frequently reported. Most (73%) were under surveillance (median 4 years from diagnosis). Many participants mentioned extensive travel burdens due to lack of local care, and virtually all participants agreed emotional support was critical. Over half (56%) of participants wished for peer support that they did not have, and 44% said their cancer information needs were insufficiently addressed. Some emphasized that having nurses facilitating care coordination and options for local care made care feel more personalized. Participants identified virtual options for cancer support as potentially beneficial, particularly when meeting in person was not possible.ConclusionsLack of peer support, lack of local care, and travel burdens are significant concerns among rural cancer survivors. Participants expressed positive views about their rural residence and mentioned alternatives and rural strengths such as virtual support options, help from nurses, and caring relationships in their communities.

Introduction: Despite the tremendous health benefits for both mother and infant, black women (including African Americans and those who self-identify as black) have lower rates of breastfeeding than all other racial groups. Historically, matriarchal role models have been essential within the black family structure. The purpose of this study was to explore matriarchal role models' attitudes and beliefs about breastfeeding. Methods: Thirty-eight black women between the ages of 46-82 years were surveyed regarding their perceptions of breastfeeding. Results: Our results revealed that 44.1% of the participants believed that breastfeeding is a better infant feeding method. However, 52.6% of the participants did not demonstrate confidence in their ability to breastfeed overall. Conclusions: These findings suggest that while black matriarchal role models have positive attitudes about breastfeeding behaviors, they may need to be educated along with postpartum and/or prenatal women about breastfeeding benefits and techniques to better support and improve black women's initiation and continuation of breastfeeding.

Abstract Background: Most early-stage breast cancer (EBC) patients (pts) do not experience signs or symptoms of disease; approximately 90% of women diagnosed in breast screening are asymptomatic in the US (Ryerson et al. 2015). Rather, side effects of cancer therapy have the greatest impact and can be burdensome to pts on and after treatment. Bother and impact have not been thoroughly assessed from the patient perspective in trials. Qualitative research with 56 pts undergoing or completing (after 3 and within 24 mos of) systemic treatment were conducted to assess the need for EBC-focused patient-reported outcome (PRO) measures. Methods: Semi-structured interviews were conducted to better understand the treatment experience; the interview guide was developed in consultation with breast cancer advocates who were former pts. The interview sample was determined to capture findings across EBC therapies (HER2-targeted [HER2], hormone/endocrine [H/E], and/or chemotherapy [CT]). Treatment experience, including treatment-related symptoms and treatment impact (e.g. on activities of daily living, emotional aspects) were discussed in each 90-minute session. Pts rated level of bother of symptoms and impacts on an 11-point scale. Disease stage, treatment received, surgery, and other health information was collected from medical charts. Qualitative analysis was conducted with ATLAS.ti software. Symptom data was reviewed to appropriately analyze therapy subgroups. Results: Stage Ia (17.9%), Ib (14.3%), IIa (32.1%), IIb (25.0%), or IIIa (7.1%) pts that received adjuvant (75%) or neoadjuvant (25%) therapy participated; 106 unique treatment-related symptoms were reported. Symptoms most frequently reported included hair loss (86.7%), change in taste (73.3%), and tiredness/fatigue (71.1%) on CT (n=45); tiredness/fatigue (34.8%), runny nose (26.1%), and watery eyes (21.7%) on HER2 (n=23); and hot flashes (50.0%), joint pain (37.5%), and weight gain (20.1%) on H/E (n=24). The most common symptoms reported after therapy completion included memory loss (63.6%), symptoms of neuropathy (numbness, tingling, and pain in fingers, 63.6%), and tiredness/fatigue (45.5%) (n=11). CT symptoms rated by ≥ 25% of pts that were most bothersome included tiredness/fatigue (x -=8.2, n=18**), hair loss (x -=8.2, n=32**), and memory loss (x -=7.7, n=15**). HER2 and H/E ratings of bother were less frequent. EBC treatment was associated with significant impact on pts' lives; categories described are below: Impact category Average bother rating* (n**)Concerns with treatment9.5 (2)Physical/functional7.7 (36)Work or school7.5 (37)Sleep7.5 (21)Daily tasks and activities7.4 (95)Emotional7.4 (62)Sexual behavior7.1 (22)Cognitive function6.8 (6)Social6.7 (54)Appearance6.5 (32)* Rating on 11-pt scale; 0=none to 10=extremely bothersome ** n=number of patients rating the level of bother Conclusion: Treatment-related symptoms and associated degree of bother differed by treatment group. Pts' descriptions of treatment impact provided additional insight into the burden of EBC. EBC-specific PROs included in trials that gain pts' perspective on experience with treatment would further inform pts and may also inform therapy choice. Citation Format: Petersen JA, Gauthier MA, Piault E, DeBusk KPA, Buzaglo JS, Eng-Wong J, Glazer JR, Green MC, Johnson JM, Spears PA, Evans CJ. Importance of the patient voice in drug development: Early-stage breast cancer and measurement gaps concerning the treatment experience. [abstract]. In: Proceedings of the Thirty-Eighth Annual CTRC-AACR San Antonio Breast Cancer Symposium: 2015 Dec 8-12; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2016;76(4 Suppl):Abstract nr P1-10-20.