Parental concerns about genital differences in children with congenital adrenal hyperplasia persist regardless of the selected intervention.

BACKGROUND: Congenital Adrenal Hyperplasia (CAH) due to 21-hydroxylase deficiency (21HD) can affect the in utero development of the genital anatomy of people with the 46XX karyotype. Health professionals engage parents in decision-making regarding managing genitals with this difference, including genital surgery options and patient communication. AIM: We sought to investigate parental communication with their daughters regarding clitoral size variation related to neonatal CAH. METHODS: Semistructured in-person interviews of 24 parents of chromosomal XX children with clitoral size variation attributable to a neonatal CAH diagnosis comprised 3 management categories: (1) clitoral reduction surgery (RS) (7 parents, 9 children), (2) clitoral concealment surgery (CS) (8 parents, 8 children), and no surgery on or around the clitoris (NS) (9 parents, 7 children). OUTCOMES: Four representative themes, Obvious Choice, Still Different, Parental Burden, and Ignorance Is Bliss, were common across all 3 treatment groups. RESULTS: For most parents, none of the 3 options of genital appearance alteration via clitoral reduction, clitoral concealment surgery, or avoidance of clitoral surgery ameliorated concerns, with most parents expressing an aversion to educating their child on the topic of genital differences, past treatment, or future function. CLINICAL IMPLICATIONS: Reliance on surgical treatment pathways to manage this psychosocial concern is ineffective in alleviating parental uncertainty without the application of psychosocial interventions. STRENGTHS AND LIMITATIONS: This was a qualitative study but was limited to parents of children with a specific genital difference, without direct exploration of parental values regarding the clitoris or the application of adequate psychosocial care. CONCLUSION: Healthcare services must have an impact on parental ability to engage in essential communication with their children in cases such as clitoral size variation related to neonatal CAH. Improved communication skills allow parents to engage in more genuine decision-making and adapt to enduring genital reality, including possible future sexual challenges for their adult child, without resorting to burdensome strategies focused on attempts to perpetuate a benevolent ignorance.

Body image and psychosocial well-being among UK military personnel and veterans who sustained appearance-altering conflict injuries.

A modest but significant number of military personnel sustained injuries during deployments resulting in an altered-appearance (e.g., limb loss and/or scarring). Civilian research indicates that appearance-altering injuries can affect psychosocial wellbeing, yet little is known about the impact of such injuries among injured personnel. This study aimed to understand the psychosocial impact of appearance-altering injuries and possible support needs among UK military personnel and veterans. Semi-structured interviews with 23 military participants who sustained appearance-altering injuries during deployments or training since 1969 were conducted. The interviews were analyzed using reflexive thematic analysis, identifying six master themes. These themes indicate that in the context of broader recovery experiences, military personnel and veterans experience a variety of psychosocial difficulties related to their changed appearance. While some of these are consistent with evidence from civilians, military-related nuances in the challenges, protective experiences, coping approaches, and preferences for support are evident. Personnel and veterans with appearance-altering injuries may require specific support for adjusting to their changed appearance and related difficulties. However, barriers to acknowledging appearance concerns were identified. Implications for support provision and future research are discussed.

Experiences and impact of the UK lockdown amongst adults who have a facial visible difference.

Globally, COVID-19 has been shown to have had a wide ranging and significant impact on individuals' daily living, and physical and mental health. However, there are some groups of individuals who may encounter unique challenges with regards to COVID-19 and whose experiences have not been investigated thus far. Therefore, this study aimed to understand the experiences of adults with a facial visible difference in relation to COVID-19 and lockdown. Semi-structured interviews were conducted with 21 adults with a variety of facial visible differences (e.g., cleft lip/palate, facial scars, skin conditions) and analyzed using inductive reflexive thematic analysis. This analysis generated three themes (Escaping the external gaze; Existing feelings manifesting in new challenges; COVID-19 taking priority). The results of this study suggest that the first U.K. lockdown from the COVID-19 pandemic created significant challenges for some individuals with a facial visible difference, and ongoing restrictions and social distancing measures might be particularly challenging for those who experience anxiety around social encounters. These findings highlight the importance of providing appropriate and accessible support for people with facial differences during lockdown and as restrictions ease.

The impact of hegemonic masculine ideals on self-esteem in prostate cancer patients undergoing androgen deprivation therapy (ADT) compared to ADT-naïve patients.

PURPOSE: Androgen deprivation therapy (ADT) for Prostate Cancer (PCa) is associated with side effects that could lead to negative body image and low masculine self-esteem of survivors. We compared a group of PCa survivors following ADT with ADT-naïve patients, expecting the ADT group to show lower masculine self-esteem. We also expected patients with hegemonic masculinity ideals to show poorer masculine self-esteem and we hypothesized that ADT would moderate this relationship, expecting PCa patients on ADT with stronger hegemonic ideals to show the worst masculine self-esteem scores among study participants. METHODS: We compared 57 PCa survivors on ADT (Mage  = 64.16 (7.11)) to 59 ADT-naïve patients (Mage  = 65.25 (5.50)), on the Masculine Self-Esteem Scale (MSES), Body Image Scale (BIS), and Hegemonic Masculinity Ideals Scale (HMIS). RESULTS: While the two groups did not significantly differ on masculine self-esteem (F [1, 115] = 3.46, p = 0.065, ηp 2  = 0.029) and body image (F [1, 115] = 3.46, p = 0.065, ηp 2  = 0.029), younger age was significantly associated with higher body image issues (F [1, 115] = 8.63, p < 0.01, ηp 2  = 0.071, ß = -0.30). Hegemonic masculinity significantly predicted more masculine self-esteem related issues (t (2, 114) = 2.31, ß = 0.375, p < 0.05). ADT did not moderate this relationship. CONCLUSIONS: The results suggest that endorsing hegemonic masculinity could represent a risk factor for low masculine self-esteem regardless of ADT status and that younger age is associated with negative body image among PCa survivors. IMPLICATIONS: These results suggest the importance of inclusion of topics related to hegemonic masculinity when providing support to PCa survivors, both when discussing treatment side effects, as well as in the later phases of survivorship. This pilot also suggests that younger PCa survivors might benefit from body-image focused support regardless of treatment plan.

Exploring the experiences and psychosocial support needs of informal carers of men with breast cancer: a qualitative study.

PURPOSE: The provision of practical and emotional support for men who have been diagnosed with breast cancer in the UK falls primarily on their partners, close family members or friends. However, informal carers' experiences are omitted from the research literature. Therefore, the present study aimed to explore the care-giving experiences of informal carers (ICs) of men with breast cancer in the UK and identify psychosocial support needs and preferences. METHODS: Semi-structured interviews, conducted on the telephone or via online video calls, explored ICs' experiences of providing support, the psychosocial issues they faced and the impact of the illness on themselves and their relationship with the patient. They were also asked about any support previously offered to them, in addition to their support preferences. Twelve ICs participated (11 females, 1 male), and 9 were spouses. Interview transcripts were analysed with reflexive thematic analysis using NVIVO software. RESULTS: Four key themes were identified: "The impact of caring", "Lack of awareness", "Isolated and alone" and "Making a difference". CONCLUSIONS: The physical, emotional, financial and social impact of providing emotional and practical care and support for a man diagnosed with breast cancer can be considerable. ICs may experience significant levels of distress and often feel isolated. Greater awareness and more research is needed to better understand the psychosocial impact and support needs for ICs of men with breast cancer. There is an evident necessity to address their information needs and offer sources of support throughout the cancer journey.

'My face in someone else's hands': a qualitative study of medical tattooing in women with hair loss.

The psychological and social impact of hair loss and its ongoing treatment can be considerable. Medical treatments are not always successful, and alternative treatments, such as medical tattooing, are growing in popularity. The aims of this study were to explore adults' motivations, experiences, and self-perceived outcomes in relation to medical tattooing. Individual telephone interviews were conducted with 22 women from the United Kingdom aged 26-67 years who had undergone medical tattooing in the past 5 years related to hair loss. Interviews were transcribed and inductive thematic analysis was performed. Appearance concerns, loss of self-confidence/identity, and the practicalities of daily upkeep were cited as reasons for seeking a semi-permanent solution. Trust in the practitioner and the ongoing costs of tattoo maintenance were important considerations in participants' decision-making process and their overall satisfaction with treatment outcomes. Participants felt the emotional impact of hair loss and the subsequent need for appearance-restoring treatment remains unrecognised. This study provides insight into participants' perceptions of an under-researched and unregulated but widely accessible treatment. Implications for the decision-making process are discussed, and suggestions for health professionals are offered.

The development and validation of the CARe Burn Scale: Child Form: a parent-proxy-reported outcome measure assessing quality of life for children aged 8 years and under living with a burn injury.

PURPOSE: Patient-reported outcome measures (PROMs) identify patient needs and therapeutic progress. This paper outlines the development and validation of the CARe Burn Scale: Child Form, a parent-proxy-reported outcome measure that assesses quality of life in children aged 8 and under living with a burn injury. METHODS: A literature review and interviews with 12 parents of children with a burn and seven health professionals informed the development of a conceptual framework and draft PROM. Cognitive debriefing interviews with 18 parents and eight health professionals provided feedback to ascertain content validity, and 311 parents took part in field testing. Rasch and traditional psychometric analyses were conducted to create a shortened version. Further psychometric analyses with 133 parents tested the shortened CARe Burn Scale in relation to other parent-proxy measures. RESULTS: The final conceptual framework included 5 domains: Social and Emotional Difficulties, Social and Emotional Well-Being, Wound/Scar Discomfort, Wound/Scar Treatment and Physical Abilities. Two scales fulfilled Rasch and traditional psychometric analyses, providing evidence of construct validity, acceptability, and reliability. Three scales did not fulfil the Rasch criteria and were retained as checklists. Compared to other parent-proxy measures, individual CARe Burn Scales correlated moderately with similar constructs and had low correlations with dissimilar constructs, indicating evidence of criterion validity (concurrent and discriminant). CONCLUSIONS: The CARe Burn Scale: Child Form can be used to measure children's quality of life after having a burn injury which can inform rehabilitation and surgical decision-making.

'They were aware of who I was as a person': Patients' and health professionals' experiences of using the PEGASUS intervention to facilitate decision-making around breast reconstruction.

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.

Associations between body dissatisfaction, importance of appearance, and aging anxiety with depression, and appearance-related behaviors in women in mid-life.

The impacts of body dissatisfaction have been widely studied among adolescent girls, but much less in women in mid-life. In this study, we evaluated the associations between body dissatisfaction, psychological health and behaviors used to manage age-related changes, in an online survey of 331 women aged 45-65. Body dissatisfaction, importance of appearance and aging anxiety were associated with higher depression scores. Moreover, importance of appearance and aging anxiety were associated with the probability of using "anti-aging" behaviors. It seems that with age, for a subgroup of women, the pressure to stay young may be added to that of staying thin.

The experience of persistent pain in adult cancer survivors: A qualitative evidence synthesis.

OBJECTIVE: This qualitative evidence synthesis aimed to identify, review and synthesise qualitative research describing the experience of persistent pain in adult cancer survivors. METHODS: A systematic literature search was conducted between December 2007 and June 2019. Data synthesis followed Thomas and Harden's (2008) method of thematic synthesis. RESULTS: Four studies were identified, together incorporating findings from 52 female breast cancer survivors. Six themes were generated as follows: (a) interwoven relationship between experience of cancer and persistent pain, (b) lack of preparedness and support for persistent pain, (c) physical impact of persistent pain, (d) employing coping strategies, (e) emotional experience of persistent pain and (f) conceptualisation of persistent pain. CONCLUSIONS: Persistent pain is intrinsically interwoven with women's experiences of cancer. Persistent pain was unexpected, and women did not feel supported. Women need more information about persistent pain after cancer treatment and support with self-management of pain. Ways to best support cancer survivors with persistent pain need exploration and a review of currently available services is required. More research is needed to understand the experiences of men and other cancer groups.

Exploring the Experiences of Adults With Microtia: A Qualitative Study.

OBJECTIVE: Microtia is a medically complex condition, with the option of surgery to address hearing and reconstruct the ear. The current study explored adults' experiences of microtia, with a particular focus on the psychosocial impact and experiences of ear reconstruction. The ultimate aim was to identify areas for support and future research that could improve patient care. DESIGN: Fifteen adults (12 females) aged between 20 and 62 years took part in semi-structured interviews. Interviews were audio-recorded, transcribed verbatim, and analyzed using inductive thematic analysis. RESULTS: Three main themes were identified in the data: microtia as an invisible difference, surgery as a welcome opportunity, and living well with microtia. Participants had incorporated microtia into their self-concept and did not report a lasting negative impact on their lives. However, some psychosocial challenges were reported, including anxiety about showing their ears (even after reconstruction), disclosing their diagnosis to romantic partners, surgical decision-making, and feeling unsupported in the work environment. CONCLUSION: Individuals with microtia may benefit from psychosocial interventions to increase confidence, access to support for treatment decision-making, and guidance around disclosing microtia to employers.

Women's initial experiences of their appearance after mastectomy and/or breast reconstruction: A qualitative study.

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.

"It felt like unfinished business, it feels like that's finished now": Women's experiences of decision making around contralateral prophylactic mastectomy (CPM).

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.

Body image issues and attitudes towards exercise amongst men undergoing androgen deprivation therapy (ADT) following diagnosis of prostate cancer.

BACKGROUND: Androgen deprivation therapy (ADT) is an established treatment for prostate cancer (PCa), but its side-effects can affect body appearance and functioning. However, research into the impact of ADT on body image is limited. Exercise can help patients to counterbalance some side-effects, potentially improving body image too. However, adherence to exercise recommendations is low. Therefore, we explored body image after ADT and attitudes towards exercise. METHODS: Twenty two semi-structured interviews were conducted with PCa patients receiving ADT (Mage = 67.9 years old, SD = 9.99). RESULTS: Participants expressed appearance dissatisfaction focusing on body feminization. Participants exercised to counterbalance ADT side-effects and improve mood. Exercise also helped them to re-establish a sense of control over their body and experience a sense of achievement. However, some men described being worried that their appearance and physical performance would be judged by others, so they often exercised alone or gave up exercise. Time management and fatigue were also identified as exercise barriers. CONCLUSION: These findings highlight the need to further investigate body image concerns and exercise barriers in PCa patients undergoing ADT. These results could also inform support groups and health care professionals on the topic. However, further research should explore the most effective and acceptable ways to provide support to PCa patients on body image issues.

Using Photo-Elicitation to Explore Families' Experiences of Burn Camp.

A qualitative study using photo-elicitation was conducted to investigate the experiences of family members attending a residential burn camp. Six families were provided with cameras and asked to take photographs of their time at camp. They were subsequently interviewed about their experiences of camp, using their photographs as prompts. Thematic analysis of interview transcripts identified three main themes: benefits for the family as a whole (new activities and experiences and lasting impacts), benefits for the child (having fun without feeling different), and benefits for the parent/carer (support from those who understand). This is the first study to specifically investigate the experience of the whole family at a burn camp and suggests that attendance may offer a number of benefits for parents/carers and children. Photo-elicitation was an effective method for encouraging participants to recall and discuss their time at camp, and should be considered in future burns research.

Efficacy of psychosocial and physical activity-based interventions to improve body image among women treated for breast cancer: A systematic review.

OBJECTIVE: Body image concerns warrant attention among women who have undergone treatment for breast cancer, due to their significant consequences for psychological and physical health, and interpersonal relationships. This paper systematically reviews the effectiveness of interventions on body image outcomes among this group, in order to inform health care provision and strategic directions for research. METHODS: Fourteen electronic databases were searched for articles published between 1992 and 2017 that evaluated interventions with women who had undergone treatment for breast cancer in controlled trials with at least one body image measure. Data were extracted and studies were assessed for their methodological quality using the Cochrane Collaboration tool for assessing risk of bias. RESULTS: Twenty-one articles evaluating 26 interventions met inclusion criteria. Nine interventions significantly improved body image at either post-test or follow-up (ds = 0.15-1.43), with none reporting sustained effects across all time points. Effective interventions comprised psychotherapy, psychoeducation, or physical activity, were delivered at different treatment stages and mostly adopted a multisession, face-to-face, group format. However, only 4 interventions were evaluated within methodologically rigorous studies and are therefore recommended for use by health professionals aiming to improve the body image of women at different stages of treatment for breast cancer. CONCLUSIONS: To advance the field, we recommend a less biomedical disease- and treatment-focused approach to interventions, and instead a more biopsychosocial theoretical approach targeting broader modifiable psychosocial influences upon body image. Replication and randomised controlled trials of greater rigour are also required to improve the methodological quality of studies.

"It's just more personal": Using multiple methods of qualitative data collection to facilitate participation in research focusing on sensitive subjects.

BACKGROUND: Often researchers use only one interview method within a single study. However, it is increasingly common for a variety of interview methods to be employed within a project. Providing choice to participants may facilitate recruitment, particularly when research focuses on a sensitive subject. AIM: This paper aims to explore participants' reasons for their choice of interview method in qualitative research focusing on a sensitive subject. METHODS: Qualitative data was collected from 12 participants regarding their choice of interview method (face-to-face, Skype, telephone or email) in a wider study investigating parents' experiences following their child's burn-injury. Interview data was transcribed verbatim and thematic analysis was used to analyse responses. RESULTS: Participants most frequently chose to take part in an interview by telephone (n = 5), followed by email (n = 4), then Skype (n = 2), and face-to-face (n = 1). Four themes emerged suggesting that participants' decisions to participate via a particular method were determined by personal convenience, their belief in their ability to be open with the researcher despite potential upset caused by the topic, their ability to get a "feel" for the researcher, and concern about giving adequate depth in responses. CONCLUSIONS: Flexibility regarding the ways in which participants can take part in qualitative research may improve participant access to research, recruitment, and response-rate. Although, the depth and quantity of data gathered using different methods can vary. It is important that researchers consider the procedures and appropriateness of using different methods of interviewing and what impact such methods might have upon themselves and their participants.

The psychosocial experiences of breast cancer amongst Black, South Asian and White survivors: do differences exist between ethnic groups?

BACKGROUND: Very little UK-based research has examined breast cancer-related experiences of Black and Minority Ethnic populations, and we do not know whether the psychosocial impact of diagnosis and treatment in this group is any different to that of White women. Therefore, this study examined similarities and differences amongst Black, South Asian and White breast cancer survivors. METHODS: A quantitative, cross-sectional survey was conducted; 173 breast cancer survivors (80 White, 53 South Asian and 40 Black) completed a questionnaire, which assessed psychological functioning, social support, body image and beliefs about cancer. RESULTS: Significant differences (p < 0.05) were reported between White and South Asian participants: compared with White women, South Asian participants reported higher levels of anxiety and depression, poorer quality of life and held higher levels of internal and fatalistic beliefs pertaining to cancer. Black and South Asian women reported higher levels of body image concerns than White women, and held stronger beliefs that God was in control of their cancer. South Asian women turned to religion as a source of support more than Black and White women. CONCLUSION: This study enhances current understanding of the experience and impact of breast cancer amongst Black and South Asian women, and demonstrates similarities and differences between the ethnic groups. The findings highlight implications for healthcare professionals, particularly in relation to providing culturally sensitive care and support to their patients. Copyright © 2016 John Wiley & Sons, Ltd.

Qualitatively understanding patients' and health professionals' experiences of the BRECONDA breast reconstruction decision aid.

OBJECTIVE: Women diagnosed with breast cancer or ductal carcinoma in situ and those with a genetic susceptibility to developing this disease face the challenging decision of whether or not to undergo breast reconstruction following mastectomy. As part of a large randomized controlled trial, this qualitative study examined women's experiences of using the Breast RECONstruction Decision Aid (BRECONDA) and health professionals' feedback regarding the impact of this resource on patients' knowledge and decision making about breast reconstruction. METHOD: Semistructured interviews were conducted with women who accessed the BRECONDA intervention (N = 36) and with their healthcare providers (N = 6). All interviews were transcribed verbatim and subjected to thematic analysis by 3 independent coders. RESULTS: Participants reported an overall positive impression, with all interviewees endorsing this decision aid as a useful resource for women considering reconstructive surgery. Thematic analysis of patient interviews revealed 4 themes: overall impressions and aesthetics; personal relevance and utility; introducing BRECONDA; and advantages and suggested improvements. Analysis of health professionals' interviews also revealed 4 themes: need for BRECONDA, impact of BRECONDA, potential difficulties that may arise in using the decision aid, and recommending BRECONDA to patients. Patients indicated that they derived benefit from this resource at all stages of their decision-making process, with the greatest perceived benefit being for those early in their breast reconstruction journey. CONCLUSION: These findings support the use of BRECONDA as an adjunct to clinical consultation and other information sources.

A study protocol of the effectiveness of PEGASUS: a multi-centred study comparing an intervention to promote shared decision making about breast reconstruction with treatment as usual.

BACKGROUND: Increasingly, women elect breast reconstruction after mastectomy. However, their expectations of surgery are often not met, and dissatisfaction with outcome and ongoing psychosocial concerns and distress are common. We developed a patient-centered intervention, PEGASUS:(Patients' Expectations and Goals: Assisting Shared Understanding of Surgery) which supports shared decision making by helping women clarify their own, individual goals about reconstruction so that they can discuss these with their surgeon. Our acceptability/feasibility work has shown it is well received by patients and health professionals alike. We now need to establish whether PEGASUS improves patients' experiences of breast reconstruction decision making and outcomes. The purpose of this study is, therefore, to examine the effectiveness of PEGASUS, an intervention designed to support shared decision making about breast reconstruction. METHODS: A multi-centered sequential study will compare the impact of PEGASUS with usual care, in terms of patient reported outcomes (self-reported satisfaction with the outcome of surgery, involvement in decision making and in the consultation) and health economics. Initially we will collect data from our comparison (usual care) group (90 women) who will complete standardized measures (Breast-Q, EQ5D -5 L and ICECAP- A) at the time of decision making, 3, 6 and 12 months after surgery. Health professionals will then be trained to use PEGASUS, which will be delivered to the intervention group (another 90 women completing the same measures at the time of decision making, and 3, 6 and 12 months after surgery). Health professionals and a purposefully selected sample of participants will be interviewed about whether their expectations of reconstruction were met, and their experiences of PEGASUS (if appropriate). DISCUSSION: PEGASUS may have the potential to provide health professionals with an easily accessible tool aiming to support shared decision making and improve patients' satisfaction with breast reconstruction. Results of this study will be available at the end of 2019. TRIAL REGISTRATION: ISRCTN 18000391 (DOI 10.1186/ISRCTN18000391) 27/01/2016.