Objective: Surgical procedures intended to treat breast cancer or reduce risk of developing the disease typically result in changes to appearance and scarring of the breast area, and any donor sites. The longer-term impact of these changes on body image and quality of life are well documented, but research in this field has failed to explore women's initial experiences of their appearance after surgery. This study used a qualitative approach to gain insight and better understand the experiences of women at this time point in their treatment pathway. Methods: Women (n=128) who had undergone mastectomy and/or breast reconstruction following a diagnosis of breast cancer or to reduce their risk of developing the disease completed an online survey. Open-ended questions asked participants about their experiences when seeing the postsurgical appearance of their breast/breast area (and donor site, if relevant) for the first time, and the support available to them.Results: Thematic analysis generated four key themes: "preparedness and support,""first thoughts and emotions," "loss and grief," and "the reaction of others." Conclusions:There was considerable variability in women's experiences. Some felt prepared and emotionally supported at this time, whilst others felt this element of care was missing. The findings suggest that there is a need to ensure all women are informed and have the necessary support when looking at the results of their surgery for the first time. Areas for improvement were proposed, including preoperative discussions, increased preparation and support. This could potentially contribute to better patient outcomes overall.
Introduction: Patient Reported Outcome Measures (PROMs) identify vital information about patient needs and therapeutic progress. This paper outlines the development and validation of the CARe Burn Scale-Adult Form: a PROM that assesses quality of life in adults living with a burn injury. Methods: 11 patient, 10 family member and 4 health professional interviews, and a systematic review were conducted to inform the development of a conceptual framework and a draft measure. Cognitive debriefing interviews conducted with 3 adult burn patients, 1 family member and 8 health professionals provided feedback to ascertain content validity of the measure. The measure was then field tested with 304 adult burn patients. Rasch psychometric analysis was conducted for scale reduction, and traditional psychometric analyses provided a comparison with other measures. Further psychometric testing with an additional 118 adult burn patients tested the shortened CARe Burn Scale in relation to other quality of life PROMs. Results: The conceptual framework outlined 14 domains; 12 of which fulfilled Rasch and traditional psychometric analyses. Two individual scales did not fulfil the Rasch criteria and were retained as checklists. Individual CARe Burn Scales correlated moderately-to-highly with other quality of life scales measuring similar constructs, and had low-to-no correlations with dissimilar constructs and the majority of sociodemographic factors, indicating evidence of concurrent and divergent validity. 3 Conclusions: The CARe Burn Scale-Adult Form can help identify patient needs and provides burns-specialist health professionals with a tool to assess quality of life and therapeutic progress after a burn event and related treatment.
Objective Increasing numbers of women in the United Kingdom are choosing to have a contralateral prophylactic mastectomy (CPM) after diagnosis of breast cancer. Whilst research suggests that many experience high rates of psychological well‐being after CPM, professional guidelines suggest CPM is “not required” for the majority of unilateral breast cancer patients, and some individuals consider the surgery to be controversial. Existing research has explored patients' reasons for seeking CPM; however, little is known about their experiences of decision making. This study aimed to investigate women's experiences of decision making around CPM in the United Kingdom. Methods Semistructured qualitative interviews were conducted with 27 women, recruited through breast cancer support charities. All participants had CPM in the United Kingdom after a diagnosis of unilateral breast cancer, ductal carcinoma in situ (DCIS), or invasive ductal carcinoma. Data were analysed using thematic analysis. Results Two main themes were generated from the analytic process: “sanity check” (“battling for CPM,” “feeling stigmatised,” “seeking similar others”) and “reclaiming the body” (“being true to self,” “moving forward”). Women described defending their decision to have CPM, concerns that their thoughts about surgery may be considered “abnormal,” and seeking support from peers. The decision to have CPM was discussed in terms of their future relationship with their body and moving forward after cancer. Conclusions This study highlights the importance of interactions with health care professionals in the decision‐making experience, the role of peer support, and the need to fully understand the potentially complex and multifaceted nature of each woman's decision to seek CPM.
Objective Many women choose to have breast reconstruction after mastectomy; however, decision‐making can be difficult and expectations are often unmet. The PEGASUS intervention (Patient Expectations and Goals: Assisting Shared Understanding of Surgery) was developed to support shared decision‐making by helping women and healthcare professionals to clarify and discuss their individual expectations around surgery. This study aimed to explore patients’ and health professionals’ experiences of using the intervention and its implementation. Methods Forty interviews were conducted with participants in a large scale, multi‐site trial of the effectiveness of PEGASUS, from ‘intervention’ (n=16) and ‘usual care’ groups (n=11), and healthcare professionals (n=13). Data were analysed using thematic analysis. Results ‘Usual care’ participants described feeling overwhelmed in decision‐making (‘bombarded’), often using their own research to break down information (‘process of elimination’). In contrast, intervention group participants described PEGASUS providing focus (‘focus amongst the frenetic’), and increased connection with clinicians (‘more than a number’). Healthcare professionals described increased focus on patient priorities (‘shifting focus’), but stressed the need for whole team buy‐in (‘collective commitment’). Conclusions The PEGASUS intervention offered a qualitatively different experience to individuals considering breast reconstruction, with potential to enhance patients’ and healthcare professionals’ feelings of shared decision‐making and patient‐centred care. Trial registration: ISRCTN 18000391 (https://doi.org/10.1186/ISRCTN18000391) 27/01/2016.
Some evidence suggests that surgical treatment methods may lead to greater improvements in patients' quality of life than compression bandaging alone; however, future research may focus on the psychological mechanisms underlying such changes.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
hi@scite.ai
10624 S. Eastern Ave., Ste. A-614
Henderson, NV 89052, USA
Copyright © 2024 scite LLC. All rights reserved.
Made with 💙 for researchers
Part of the Research Solutions Family.