Adherence to melanoma screening and surveillance skin check schedules tailored to personal risk.

Population-wide skin cancer screening is not currently recommended in most countries. Instead, most clinical guidelines incorporate risk-based recommendations for skin checks, despite limited evidence around implementation and adherence to recommendations in practice. We aimed to determine adherence to personal risk-tailored melanoma skin check schedules and explore reasons influencing adherence. Patients (with/without a previous melanoma) attending tertiary dermatology clinics at the Melanoma Institute Australia, Sydney, Australia, were invited to complete a melanoma risk assessment questionnaire via iPad and provided with personal risk information alongside a risk-tailored skin check schedule. Data were collected from the risk tool, clinician-recorded data on schedule deviations, and appointment booking system. Post-consultation, we conducted semi-structured interviews with patients and clinic staff. We used a convergent segregated mixed methods approach for analysis. Interviews were audio recorded, transcribed and data were analysed thematically. Participant data were analysed from clinic records (n = 247) and interviews (n = 29 patients, 11 staff). Overall, there was 62% adherence to risk-tailored skin check schedules. In cases of non-adherence, skin checks tended to occur more frequently than recommended. Decisions to deviate were similarly influenced by patients (44%) and clinicians (56%). Themes driving non-adherence among patients included anxiety and wanting autonomy around decision-making, and among clinicians included concerns around specific lesions and risk estimate accuracy. There was moderate adherence to a clinical service program of personal risk-tailored skin check recommendations. Further adherence may be gained by incorporating strategies to identify and assist patients with high levels of anxiety and supporting clinicians to communicate risk-based recommendations with patients.

Impact of an Online Risk Calculator for Sentinel Node Positivity on Management of Patients with T1 and T2 Melanomas.

BACKGROUND: Predicting which patients with American Joint Committee on Cancer (AJCC) T1-T2 melanomas will have a positive sentinel lymph node (SLN) is challenging. Melanoma Institute Australia (MIA) developed an internationally validated SLN metastatic risk calculator. This study evaluated the nomogram's impact on T1-T2 melanoma patient management at MIA. METHODS: SLN biopsy (SLNB) rates were compared for the pre- and post-nomogram periods of 1 July 2018-30 June 2019 and 1 August 2020-31 July 2021, respectively. RESULTS: Overall, 850 patients were identified (pre-nomogram, 383; post-nomogram, 467). SLNB was performed in 29.0% of patients in the pre-nomogram group and 34.5% in the post-nomogram group (p = 0.091). The overall positivity rate was 16.2% in the pre-nomogram group and 14.9% in the post-nomogram group (p = 0.223). SLNB was performed less frequently in T1a melanoma patients in the pre-nomogram group (1.1%, n = 2/177) than in the post-nomogram group (8.6%, n = 17/198) [p ≤ 0.001]. This increase was particularly for melanomas with a risk score ≥ 5%, with an SLN positivity rate of 11.8% in the post-nomogram group (p = 0.004) compared with zero. For T1b melanomas with a risk score of > 10%, the SLNB rate was 40.0% (8/20) pre-nomogram and 75.0% (12/16) post-nomogram (p = 0.049). CONCLUSIONS: In this specialized center, the SLN risk calculator appears to influence practice for melanomas previously considered low risk for metastasis, with increased use of SLNB for T1a and higher-risk T1b melanomas. Further evaluation is required across broader practice settings. Melanoma management guidelines could be updated to incorporate the availability of nomograms to better select patients for SLNB than previous criteria.

Survivorship care for people affected by advanced or metastatic cancer: MASCC-ASCO standards and practice recommendations.

PURPOSE: People with advanced or metastatic cancer and their caregivers may have different care goals and face unique challenges compared to those with early-stage disease or those nearing the end-of-life. These MASCC-ASCO standards and practice recommendations seek to establish consistent provision of quality survivorship care for people affected by advanced or metastatic cancer. METHODS: An expert panel comprising MASCC and ASCO members was formed. Standards and recommendations relevant to the provision of quality survivorship care for people affected by advanced or metastatic cancer were developed through conducting: (1) a systematic review of unmet supportive care needs; (2) a scoping review of cancer survivorship, supportive care, and palliative care frameworks and guidelines; and (3) an international modified Delphi consensus process. RESULTS: A systematic review involving 81 studies and a scoping review of 17 guidelines and frameworks informed the initial standards and recommendations. Subsequently, 77 experts (including 8 people with lived experience) across 33 countries (33% were low-to-middle resource countries) participated in the Delphi study and achieved ≥ 94.8% agreement for seven standards (1. Person-Centred Care; 2. Coordinated and Integrated Care; 3. Evidence-Based and Comprehensive Care; 4. Evaluated and Communicated Care; 5. Accessible and Equitable Care; 6. Sustainable and Resourced Care; 7. Research and Data-Driven Care) and ≥ 84.2% agreement across 45 practice recommendations. CONCLUSION: Standards of survivorship care for people affected by advanced or metastatic cancer are provided. These MASCC-ASCO standards will support optimization of health outcomes and care experiences by providing guidance to stakeholders in cancer care (healthcare professionals, leaders, and administrators; governments and health ministries; policymakers; advocacy agencies; cancer survivors and caregivers. Practice recommendations may be used to facilitate future research, practice, policy, and advocacy efforts.

Patient demographic characteristics and risk factors associated with sun protection behaviours in specialist melanoma clinics.

OBJECTIVE: We investigated the association between sun protection behaviours and demographic and melanoma risk characteristics of patients attending Australian melanoma specialist clinics. This may assist in targeting and tailoring melanoma prevention patient education for people at high-risk and specific population subgroups. METHODS: A cross-sectional analysis of questionnaire data collected from participants attending the dermatology clinics at two major melanoma centres in Sydney, Australia between February 2021 and September 2023. The primary outcome was Sun Protection Habits (SPH) index (a summary score measured as habitual past month use of sunscreen, hats, sunglasses, a shirt with sleeves that covers the shoulders, limiting midday sun exposure and seeking shade, using a Likert scale). The primary analysis considered the SPH index and its component items scored as continuous. RESULTS: Data from 883 people were analysed. Factors associated with less frequent sun protection behaviours overall included male gender, no personal history of melanoma, lower perceived risk, lower calculated 10-year risk of developing melanoma, and no private health insurance. People aged >61 years reported lower use of sunscreen but higher use of hats and sleeved-shirts compared with people in the younger age group. There was no difference in overall sun protection behaviours according to family history of melanoma, country of birth or by lifetime melanoma risk among people without a personal history of melanoma. CONCLUSIONS: These findings highlight the potential for targeting high-risk individuals with less frequent use of sun protection for patient education, public health messaging and ultimately improving sun protection behaviours.

Measuring the quality of skin cancer management in primary care: A scoping review.

Skin cancer is a growing global problem and a significant health and economic burden. Despite the practical necessity for skin cancer to be managed in primary care settings, little is known about how quality of care is or should be measured in this setting. This scoping review aimed to capture the breadth and range of contemporary evidence related to the measurement of quality in skin cancer management in primary care settings. Six databases were searched for relevant texts reporting on quality measurement in primary care skin cancer management. Data from 46 texts published since 2011 were extracted, and quality measures were catalogued according to the three domains of the Donabedian model of healthcare quality (structure, process and outcome). Quality measures within each domain were inductively analysed into 13 key emergent groups. These represented what were deemed to be the most relevant components of skin cancer management as related to structure, process or outcomes measurement. Four groups related to the structural elements of care provision (e.g. diagnostic tools and equipment), five related to the process of care delivery (e.g. diagnostic processes) and four related to the outcomes of care (e.g. poor treatment outcomes). A broad range of quality measures have been documented, based predominantly on articles using retrospective cohort designs; systematic reviews and randomised controlled trials were limited.

Potential inequities in availability of care from breast care nurses: a qualitative study reporting the experiences and perspectives of women with metastatic breast cancer in Australia.

BACKGROUND: International consensus guidelines recommend patients with metastatic breast cancer have access to a nurse experienced in the treatment of metastatic breast cancer. This study aimed to explore women's experiences of supportive care from breast care nurses, including their perspectives on the role breast care nurses currently play in providing support to people with metastatic breast cancer. METHODS: Multiple semi-structured qualitative interviews with 38 women with metastatic breast cancer in Australia. Data relating to nursing care were extracted and analysed using thematic analysis. RESULTS: Three themes were identified: (1) feeling that supportive care needs are unrecognised; (2) confusion about role and relevance of breast care nurse to those with metastatic breast cancer; (3) care from metastatic breast care nurses (when available) was appreciated, valued and beneficial. Participants' experiences differed in relation to ease of access to, amount of contact with, and level of care provided by breast care nurses. Contact and care ranged from little or none to comprehensive and ongoing. A key system-level challenge was that the diversity of diagnostic and treatment pathways for metastatic breast cancer meant that no systematic means existed to support routine or regular contact between breast care nurses and participants. Participants who did report having access to a specialised metastatic breast care nurse placed considerable value on the care received. For these participants, care from the breast care nurse extended and complemented care from the oncologist and included much needed psychosocial and practical support. For these participants, the breast care nurse assumed the role of key contact and care coordinator and was valued for their availability, accessibility and responsiveness. High levels of trust developed between patient and breast care nurse. CONCLUSIONS: Findings indicate that there may be gaps and inequities in supportive care in Australia for people diagnosed with metastatic breast cancer, a finding that supports earlier reports of limited access to breast care nurses for people with metastatic breast cancer in Australia. The specialised metastatic breast care nurse could potentially play a key role in addressing the high level of unmet supportive care needs and improve continuity of care for these patients.

Diagnostic tools used for melanoma: A survey of Australian general practitioners and dermatologists.

BACKGROUND/OBJECTIVE: Diagnostic tools such as dermoscopy, sequential digital dermoscopy imaging (SDDI), total body photography (TBP) and automated diagnostic tools are available to assist in early melanoma diagnosis. The use, accessibility and barriers of dermoscopy have been well studied; however, there are few similar studies regarding SDDI, TBP and automated diagnostic tools. We aim to understand the use of these diagnostic aids amongst Australian general practitioners (GPs) and dermatologists. METHODS: Between June 2019 and January 2020, GPs and dermatologists across Australia were invited to participate in an online survey. Surveys were distributed through GP and dermatology organisations. RESULTS: A total of 227 survey responses were received, 175 from GPs and 52 from dermatologists. Amongst GPs, 44.6% worked in a skin cancer clinic. Dermoscopy was used at least occasionally by 98.9% of all GPs. SDDI was used by 93.6% of skin cancer GPs, 80.8% of dermatologists and 45.3% of generalist GPs. TBP was used or recommended by 77.1% of generalist GPs, 82.3% of skin cancer GPs and 86.5% of dermatologists. The most common barriers to the use of TBP were cost, limited accessibility, poor patient compliance, and time required for both patients and doctors. Very few clinicians reported using automated diagnostic tools. There was an interest in future diagnostic aids for melanoma in 88% of GPs and dermatologists. CONCLUSION: Dermoscopy, SDDI and TBP were commonly used by responding Australian skin cancer GPs and dermatologists in this survey. Automated diagnostic tools were not reported to be used routinely. Several barriers were identified for use of TBP.

Knowledge and attitudes of Australian dermatologists towards sentinel lymph node biopsy for melanoma: a mixed methods study.

BACKGROUND/OBJECTIVES: In melanoma management, sentinel lymph node biopsy (SLNB) is used to stage patients and to indicate prognosis. More recently, it has been used to select patients for adjuvant therapy. This study aimed to report knowledge of and attitudes towards SLNB for patients with melanoma among Australian dermatologists. METHODS: Mixed methods study using cross-sectional questionnaires (n = 88) and semi-structured interviews (n = 13), May-September 2019. RESULTS: Of the dermatologists surveyed, 56% thought SLNB had an important role in melanoma management, 26% were unsure and 18% thought SLNB unimportant. Of the 92% who would discuss SLNB with their patients, the main stated value of SLNB was for assessing eligibility for adjuvant therapies (79%); only 60% indicated SLNB was of value for providing prognostic information, and just over half (53%) thought it could improve staging. Interview data indicated that attitudes towards SLNB are shifting among dermatologists, driven by data from landmark clinical trials and the influence of professional networks. Accordingly, interviewees adopted one of three positions in relation to SLNB: (a) believed in utility of SLNB and adhered to the guidelines; (b) were unconvinced about utility of SLNB but adhered to the guidelines; and (c) were unconvinced about utility of SLNB and did not adhere to the guidelines. CONCLUSION: Although most of the dermatologists surveyed were familiar with and follow the SLNB recommendations, some disagreement with and distrust of the recommendations was evident. Greater acceptance of the SLNB recommendations appeared to be driven by the improved outcomes demonstrated in stage III patients receiving adjuvant systemic therapy.

Phase IIa trial in Duchenne muscular dystrophy shows vamorolone is a first-in-class dissociative steroidal anti-inflammatory drug.

We report a first-in-patient study of vamorolone, a first-in-class dissociative steroidal anti-inflammatory drug, in Duchenne muscular dystrophy. This 2-week, open-label Phase IIa multiple ascending dose study (0.25, 0.75, 2.0, and 6.0 mg/kg/day) enrolled 48 boys with Duchenne muscular dystrophy (4 to <7 years), with outcomes including clinical safety, pharmacokinetics and pharmacodynamic biomarkers. The study design included pharmacodynamic biomarkers in three contexts of use: 1. Secondary outcomes for pharmacodynamic safety (insulin resistance, adrenal suppression, bone turnover); 2. Exploratory outcomes for drug mechanism of action; 3. Exploratory outcomes for expanded pharmacodynamic safety. Vamorolone was safe and well-tolerated through the highest dose tested (6.0 mg/kg/day) and pharmacokinetics of vamorolone were similar to prednisolone. Using pharmacodynamic biomarkers, the study demonstrated improved safety of vamorolone versus glucocorticoids as shown by reduction of insulin resistance, beneficial changes in bone turnover (loss of increased bone resorption and decreased bone formation only at the highest dose level), and a reduction in adrenal suppression. Exploratory biomarkers of pharmacodynamic efficacy showed an anti-inflammatory mechanism of action and a beneficial effect on plasma membrane stability, as demonstrated by a dose-responsive decrease in serum creatine kinase activity. With an array of pre-selected biomarkers in multiple contexts of use, we demonstrate the development of the first dissociative steroid that preserves anti-inflammatory efficacy and decreases steroid-associated safety concerns. Ongoing extension studies offer the potential to bridge exploratory efficacy biomarkers to clinical outcomes.

Revealing the complexity of quitting smoking: a qualitative grounded theory study of the natural history of quitting in Australian ex-smokers.

OBJECTIVE: To explore the quitting histories of Australian ex-smokers in order to develop an understanding of the varied contribution of smoking cessation assistance (either pharmacotherapy or professionally mediated behavioural support) to the process of quitting. DESIGN: Qualitative grounded theory study; in-depth interviews. PARTICIPANTS: 37 Australian adult ex-smokers (24-68 years; 15 men, 22 women) who quit in the past 6-24 months. RESULTS: Although participants' individual quitting histories and their overall experiences of quitting were unique, when the 37 quitting histories were compared it was clear two experiences were common to almost all participants: almost no one quit at their first quit attempt and almost everyone started out quitting unassisted. Furthermore, distinct patterns existed in the timing and use of assistance, in particular the age at which assistance was first used, how some participants were resolutely uninterested in assistance, and how assistance might have contributed to the process of successful quitting even if not used on the final quit attempt. Importantly, three patterns in use of assistance were identified: (1) only ever tried to quit unassisted (n=13); (2) started unassisted, tried assistance but reverted back to unassisted (n=13); (3) started unassisted, tried assistance and quit with assistance (n=11). For most participants, insight into what quitting would require was only gained through prior quitting experiences with and without assistance. For a number of participants, interest in assistance was at its lowest when the participant was most ready to quit. CONCLUSION: Quitting should be viewed as a process drawing on elements of assisted and unassisted quitting rather than a stand-alone event that can be labelled as strictly assisted or unassisted.

Measured, opportunistic, unexpected and naïve quitting: a qualitative grounded theory study of the process of quitting from the ex-smokers' perspective.

BACKGROUND: To better understand the process of quitting from the ex-smokers' perspective, and to explore the role spontaneity and planning play in quitting. METHODS: Qualitative grounded theory study using in-depth interviews with 37 Australian adult ex-smokers (24-68 years; 15 males, 22 females) who quit smoking in the past 6-24 months (26 quit unassisted; 11 used assistance). RESULTS: Based on participants' accounts of quitting, we propose a typology of quitting experiences: measured, opportunistic, unexpected and naïve. Two key features integral to participants' accounts of their quitting experiences were used as the basis of the typology: (1) the apparent onset of quitting (gradual through to sudden); and (2) the degree to which the smoker appeared to have prepared for quitting (no evidence through to clear evidence of preparation). The resulting 2 × 2 matrix of quitting experiences took into consideration three additional characteristics: (1) the presence or absence of a clearly identifiable trigger; (2) the amount of effort (cognitive and practical) involved in quitting; and (3) the type of cognitive process that characterised the quitting experience (reflective; impulsive; reflective and impulsive). CONCLUSIONS: Quitting typically included elements of spontaneity (impulsive behaviour) and preparation (reflective behaviour), and, importantly, the investment of time and cognitive effort by participants prior to quitting. Remarkably few participants quit completely out-of-the-blue with little or no preparation. Findings are discussed in relation to stages-of-change theory, catastrophe theory, and dual process theories, focusing on how dual process theories may provide a way of conceptualising how quitting can include elements of both spontaneity and preparation.

Mechanisms of global diversification in the marine species Madeiran Storm-petrel Oceanodroma castro and Monteiro's Storm-petrel O. monteiroi: Insights from a multi-locus approach.

The evolutionary mechanisms underlying the geographic distribution of gene lineages in the marine environment are not as well understood as those affecting terrestrial groups. The continuous nature of the pelagic marine environment may limit opportunities for divergence to occur and lineages to spatially segregate, particularly in highly mobile species. Here, we studied the phylogeography and historical demography of two tropically distributed, pelagic seabirds, the Madeiran Storm-petrel Oceanodroma castro, sampled in the Azores, Madeira, Galapagos and Japan, and its sister species Monteiro's Storm-petrel O. monteiroi (endemic to the Azores), using a multi-locus dataset consisting of 12 anonymous nuclear loci and the mitochondrial locus control region. Both marker types support the existence of four significantly differentiated genetic clusters, including the sampled O. monteiroi population and three populations within O. castro, although only the mitochondrial locus suggests complete lineage sorting. Multi-locus coalescent analyses suggest that most divergence events occurred within the last 200,000years. The proximity in divergence times precluded robust inferences of the species tree, in particular of the evolutionary relationships of the Pacific populations. Despite the great potential for dispersal, divergence among populations apparently proceeded in the absence of gene flow, emphasizing the effect of non-physical barriers, such as those driven by the paleo-oceanographical environments, philopatry and local adaptation, as important mechanisms of population divergence and speciation in highly mobile marine species. In view of the predicted climate change impacts, future changes in the demography and evolutionary dynamics of marine populations might be expected.

Twenty-year follow-up of newborn screening for patients with muscular dystrophy.

INTRODUCTION: An opt-out newborn screening (NBS) program for Duchenne muscular dystrophy (DMD) and Becker muscular dystrophy (BMD) was implemented at 2 hospitals in Pittsburgh, Pennsylvania, between 1987 and 1995. METHODS: For patients and their parents in families who received a diagnosis of DMD or BMD, either by NBS or by traditional diagnostics after symptom onset, attitudes toward NBS for DMD and BMD were assessed. RESULTS: All patients and most parents supported NBS for DMD and BMD. In contrast to the NBS parent cohort, the non-NBS cohort felt that diagnosis by NBS would cause anxiety. CONCLUSIONS: There was strong support of NBS for DMD and BMD in both patients and their parents in families who received a diagnosis through NBS or through traditional diagnostics. No negative psychosocial impacts of NBS were identified among those families who received a diagnosis through NBS.

What do we know about unassisted smoking cessation in Australia? A systematic review, 2005-2012.

CONTEXT: A significant proportion of smokers who quit do so on their own without formal help (ie, without professionally or pharmacologically mediated assistance), yet research into how smokers quit focuses primarily on assisted methods of cessation. OBJECTIVE: The aim of the present work was to systematically review recent smoking cessation research in Australia, a nation advanced in tobacco control, to determine what is known about smokers who quit unassisted in order to (1) inform a research agenda to develop greater understanding of the many smokers who quit unassisted and (2) elucidate possible lessons for policy and mass communication about cessation. METHODS: In January 2013, four e-databases and the grey literature were searched for articles published between 2005 and 2012 on smoking cessation in Australia. Articles focusing solely on interventions designed to stimulate cessation were excluded, as were articles focusing solely on assisted cessation, leaving articles reporting on smokers who quit unassisted. Data from articles reporting on unassisted cessation were extracted and grouped into related categories. RESULTS: A total of 248 articles reported on smoking cessation, of which 63 focused solely on interventions designed to stimulate cessation, leaving 185 reporting on the method of cessation ('how' a smoker quits). Of these, 166 focused solely on assisted cessation, leaving 19 reporting, either directly or indirectly, on smokers who quit unassisted. Data from these studies indicated 54% to 69% of ex-smokers quit unassisted and 41% to 58% of current smokers had attempted to quit unassisted. CONCLUSIONS: The majority of Australian smokers quit or attempt to quit unassisted, yet little research has been dedicated to understanding this process. Almost all research that reported unassisted cessation referenced it as a comparator to the focal point of assisted cessation. Public health may benefit from insights gained from greater research into the cessation method used by most smokers. Suggestions and a rationale for such research are provided.

Hilar closure using staplers or Hem-o-lok clips in a rabbit model.

BACKGROUND: Lung lobectomy is necessary in neonatal patients for the treatment of a variety of congenital bronchopulmonary malformations. The working space required for traditional stapling devices limits their use in pediatric video-assisted thoracoscopic (VATS) lung lobectomy. The use of Hem-o-lok clips (Teleflex Medical Inc. Research Triangle Park, NC) has been described for a number of applications in minimally invasive surgery and may provide an alternative to traditional stapling devices for bronchial closure. MATERIALS AND METHODS: Twenty-four New Zealand White rabbits were used in the study. The hilus of each cranial lung lobe was sealed with the Endo GIA (Covidien Inc, Mansfield, MA) stapler or 2 Hem-o-lok clips and the lung lobe was removed. Lung inflation to leakage point was induced by incrementally increasing tidal volume. Side of leakage, volume at leakage, and airway pressure before leakage were recorded. RESULTS: Fourteen rabbits were included in the data analysis. Leakage of air was first observed at the Hem-o-lok closure site in five rabbits and from the Endo GIA site in three rabbits. In the remaining six, both resection sites leaked simultaneously. The mean pressure before failure was 16.39 ± 7.35 mm Hg for the Hem-o-lok clips, 17.98 ± 11.12 mm Hg for the Endo GIA stapler, and 16.95 ± 3.48 mm Hg for the simultaneous failures. No statistical differences were detected in airways pressures before leakage between hilar closure devices. CONCLUSIONS: Despite advances in VATS, options for bronchial closure in pediatric patients undergoing VATS lung lobectomy remain limited. Hem-o-lok clips require less working space than traditional stapling devices and may represent an equally efficacious alternative to traditional stapling devices.

Amyotrophic lateral sclerosis in a patient with a family history of huntington disease: genetic counseling challenges.

Amyotrophic lateral sclerosis (ALS) and Huntington disease (HD) are generally considered to be distinct and easily differentiated neurologic conditions. However, there are case reports of the co-occurrence of ALS with HD. We present a 57-year-old male with a clinical diagnosis of sporadic ALS in the context of a family history of HD. This case adds to the limited literature regarding individuals with a family history of HD who present with features of ALS. There were several genetic counseling challenges in counseling this patient including the diagnostic consideration of two fatal conditions, complex risk information, the personal and familial implications, and the patient's inability to communicate verbally or through writing due to disease progression. DNA banking effectively preserved the right of our patient and his wife not to learn his HD genetic status during a stressful time of disease progression while providing the option for family members to learn this information in the future if desired. We present lessons learned and considerations for other clinical genetics professionals who are presented with similar challenging issues.

Complexities in supportive care for people with metastatic breast cancer: a qualitative study.

PURPOSE: The complexity of metastatic breast cancer, its rapidly evolving treatment, and the changing trajectory toward long-term survivorship create unique challenges for the provision of supportive care. The experiences of health professionals enacting supportive care in contexts of those living long-term with incurable cancer have received limited research attention. This qualitative study aimed to gain further insight into health professionals' experiences of supportive care in this context. METHOD: Semi-structured interviews were conducted via phone and online with 25 health and community-care professionals who support people living with metastatic breast cancer in Australia. A mix of sampling strategies was used. Thematic analysis was undertaken. Findings were interpreted through an ethics of care lens. RESULTS: Three key themes were identified. First, participants experienced supportive care as highly relational. Second, they encountered numerous moral and ethical dilemmas in enacting supportive care. Finally, enacting supportive care was complicated by fragmented and sporadic provision in a system in which supportive care is differentially valued across professions and settings. CONCLUSION: Findings draw attention to complexities in enacting supportive care in the context of metastatic breast cancer, with implications to patients and professionals. To improve the quality of care provided to patients and minimise the risk of professional burnout, greater attention is needed in supportive care guidelines to the ethical, moral, and emotional complexities experienced by professionals in this context. IMPLICATIONS FOR CANCER SURVIVORS: People living with metastatic breast cancer are a growing proportion of cancer survivors. The knowledge gained through this study may help professionals to better meet the supportive care needs of people living with metastatic breast cancer, a treatable but not curable condition.

Finding my tribe: a qualitative interview study of how people living with metastatic breast cancer perceive support groups.

PURPOSE: This study explored the value of metastatic breast cancer (MBC) support groups, and factors that affect attendance, from the perspective of people with MBC. METHODS: Semi-structured interviews were conducted with 28 women with MBC (support group attendees n = 16; non-attendees n = 12) between January 2022 and July 2023. Data were analysed using an inductive approach to thematic analysis. RESULTS: Three themes were generated: the value of sharing experiential knowledge, spaces for open and honest conversations, and opportunities to find connection and community. These factors were the main reasons that some participants valued, and chose to attend, an MBC support group. Stage-specificity and professional facilitation were identified as important aspects of group structure. Key reasons for non-attendance were concerns about misinformation, confronting the death of group members, and satisfaction with existing support networks. CONCLUSIONS: MBC support groups are beneficial for some people with MBC, providing opportunities to connect with others with the same diagnosis. For others, different forms of peer support such as online forums or one-on-one support may be preferred. We argue that ensuring those with MBC have equal access to the peer support they need will be essential in supporting people to live as well as possible with MBC. IMPLICATIONS FOR CANCER SURVIVORS: MBC support groups, if appropriately led, can provide emotional and informational benefits for people with MBC. This research may also have relevance to other metastatic cancers where novel therapies are extending survival, resulting in an emerging cancer population with distinct supportive and survivorship needs.

Making the unbearable, bearable: Qualitative examination of patient, family and nurses' perspectives on the role and value of specialist metastatic breast care nurses.

PURPOSE: To examine the role and value of specialist metastatic breast care nurses in Australia from the perspective of metastatic breast care nurses, patients, and family members. Metastatic breast cancer (mBC) is treatable yet incurable, with distinct supportive care needs, yet many of these needs are unmet. METHOD: Diverse sampling methods were used to recruit 10 people with mBC, 5 family members and 10 metastatic breast care nurses. Semi-structured interviews were conducted online or by telephone during August-December 2020, and analysed thematically. RESULTS: The role of the specialist nurse was strongly valued within and across participant groups, with close alignment regarding what was highly valued. Three themes were identified. First, nurses played a vital role in giving voice and visibility to patients with mBC in a healthcare system in which they often felt invisible. Second, nurses combined their clinical and psychosocial skills with a sense of authentic engagement to create a safe space for those with mBC to discuss their feelings, experiences, and topics, especially those that were unlikely to be discussed in their other social and clinical interactions. Finally, nurses supported patients in living as well as possible while managing symptoms, ongoing treatment, and attendant psychosocial impacts of an incurable and life-limiting condition. CONCLUSIONS: This study underscores the central importance of metastatic breast care nurses in enhancing patient well-being, bridging gaps in care, and offering much-needed support. By addressing patients' emotional, clinical, and social needs, these specialist nurses contribute to a more holistic and compassionate approach to managing mBC.