Women's perceptions of PERSPECTIVE: a breast cancer risk stratification e-platform.

BACKGROUND: Breast cancer risk stratification categorizes a woman's potential risk of developing the disease as near-population, intermediate, or high. In accordance, screening and follow up for breast cancer can readily be tailored following risk assessment. Recent efforts have focussed on developing more accessible means to convey this information to women. This study sought to document the relevance of an informational e-platform developed for these purposes. OBJECTIVE: To begin to assess a newly developed breast cancer risk stratification and decision support e-platform called PERSPECTIVE (PErsonalised Risk Stratification for Prevention and Early deteCTIon of breast cancer) among women who do not know their personal breast cancer risk (Phase 1). Changes (pre- and post- e-platform exposure) in knowledge of breast cancer risk and interest in undergoing genetic testing were assessed in addition to perceptions of platform usability and acceptability. METHODS: Using a pre-post design, women (N = 156) of differing literacy and education levels, aged 30 to 60, with no previous breast cancer diagnosis were recruited from the general population and completed self-report e-questionnaires. RESULTS: Mean e-platform viewing time was 18.67 min (SD 0.65) with the most frequently visited pages being breast cancer-related risk factors and risk assessment. Post-exposure, participants reported  significantly higher breast cancer-related knowledge (p < .001). Increases in knowledge relating to obesity, alcohol, breast density, menstruation, and the risk estimation process remained even when sociodemographic variables age and education were controlled. There were no significant changes in genetic testing interest post-exposure. Mean ratings for e-platform acceptability and usability were high: 26.19 out of 30 (SD 0.157) and 42.85 out of 50 (SD 0.267), respectively. CONCLUSIONS: An informative breast cancer risk stratification e-platform targeting healthy women in the general population can significantly increase knowledge as well as support decisions around breast cancer risk and assessment. Currently underway, Phase 2, called PERSPECTIVE, is seeking further content integration and broader implementation .

Avoir sa santé en main : le sentiment d'habilitation tel que perçu par les jeunes adultes souffrant d'un cancer avancé.

CONTEXTE: Le sentiment d'habilitation sur sa santé (health related empowerment) est un concept fondamental des soins centrés sur la personne. Toutefois, on en sait peu sur la manière dont ce concept s'articule chez les jeunes adultes ayant un diagnostic de cancer avancé. OBJECTIF: Explorer le sentiment d'habilitation à la lumière des expériences de soins de santé vécues par les jeunes adultes en phase de cancer avancé. CADRE ET PARTICIPANTS: Douze jeunes adultes (âgés de 21 à 39 ans) ont été recrutés dans un grand centre de cancérologie de Montréal, au Québec. MÉTHODOLOGIE: Des entretiens en profondeur durant entre 36 et 90 minutes ont été menés individuellement, enregistrés et retranscrits mot pour mot, puis analysés par thèmes. RÉSULTATS: Tout au long de l'expérience du cancer, les participants ont témoigné du désir soutenu de participer activement à leur traitement et à leurs soins. Quatre thèmes sont ressortis des données décrivant les processus d'attente, de prise en charge de la maladie, de mise en action et de recadrage. Sous-jacents à ces thèmes se trouvent les notions de conscience du corps, les obstacles à surmonter pour obtenir des soins, l'optimisation de la santé et la réflexion sur l'héritage qu'on laisse derrière soi. CONCLUSIONS: De façon générale, les participants voulaient demeurer en contrôle de la situation malgré les multiples difficultés inhérentes à un cancer de stade avancé. Si elles sont corroborées par d'autres recherches, ces conclusions pourraient orienter les approches de soins en oncologie afin qu'elles soient véritablement adaptées aux besoins des jeunes adultes.

Taking control over our health: Empowerment as perceived by young adults living with advanced cancer.

BACKGROUND: Health-related empowerment is a key concept in person-centred care. However, little is known of its core elements in young adults diagnosed with advanced cancer. OBJECTIVE: To explore empowerment in the context of young adults' healthcare experiences who are now in advanced stages of cancer. SETTING & PARTICIPANTS: Twelve young adults (aged 21 to 39 years) were recruited from a large cancer centre in Montreal, Quebec. METHODS: In-depth interviews lasting between 36 and 90 minutes were conducted individually, audio-recorded, transcribed verbatim, and analyzed using thematic analysis. RESULTS: Throughout the cancer trajectory, participants reported a sustained desire to be actively involved in their treatment and care. Four themes emerged from the data representing processes of waiting, managing, acting, and revisiting. Subsumed under these were notions of body ownership, facing obstacles to care, optimizing health, and (re)considering their legacy. CONCLUSIONS: Overall, participants wanted to remain in control of their situation despite the multiple challenges related to advanced cancer. If corroborated further, these findings should inform supportive cancer care approaches that are truly tailored to the needs of young adults.

Barriers and facilitators of adherence to medical advice on skin self-examination during melanoma follow-up care.

BACKGROUND: Melanoma is the fastest growing tumor of the skin, which disproportionately affects younger and middle-aged adults. As melanomas are visible, recognizable, and highly curable while in early stages, early diagnosis is one of the most effective measures to decrease melanoma-related mortality. Skin self-examination results in earlier detection and removal of the melanoma. Due to the elevated risk of survivors for developing subsequent melanomas, monthly self-exams are strongly recommended as part of follow-up care. Yet, only a minority of high-risk individuals practices systematic and regular self-exams. This can be improved through patient education. However, dermatological education is effective only in about 50% of the cases and little is known about those who do not respond. In the current literature, psychosocial variables like distress, coping with cancer, as well as partner and physician support are widely neglected in relation to the practice of skin self-examination, despite the fact that they have been shown to be essential for other health behaviors and for adherence to medical advice. Moreover, the current body of knowledge is compromised by the inconsistent conceptualization of SSE. The main objective of the current project is to examine psychosocial predictors of skin self-examination using on a rigorous and clinically sound methodology. METHODS/DESIGN: The longitudinal, mixed-method study examines key psychosocial variables related to the acquisition and to the long-term maintenance of skin self-examination in 200 patients with melanoma. Practice of self-exam behaviors is assessed at 3 and 12 months after receiving an educational intervention designed based on best-practice standards. Examined predictors of skin self-exam behaviors include biological sex, perceived self-exam efficacy, distress, partner and physician support, and coping strategies. Qualitative analyses of semi-structured interviews will complement and enlighten the quantitative findings. DISCUSSION: The identification of short and long-term predictors of skin self-examination and an increased understanding of barriers will allow health care professionals to better address patient difficulties in adhering to this life-saving health behavior. Furthermore, the findings will enable the development and evaluation of evidence-based, comprehensive intervention strategies. Ultimately, these findings could impact a wide range of outreach programs and secondary prevention initiatives for other populations with increased melanoma risk.

Development and preliminary validation of the physician support of skin self-examination scale.

Skin self-examination (SSE) is a crucial preventive health behaviour in melanoma survivors, as it facilitates early detection. Physician endorsement of SSE is important for the initiation and maintenance of this behaviour. This study focussed on the preliminary validation of a new nine-item measure assessing physician support of SSE in melanoma patients. English and French versions of this measure were administered to 188 patients diagnosed with melanoma in the context of a longitudinal study investigating predictors and facilitators of SSE. Structural validity was investigated using exploratory factor analysis conducted in Mplus and convergent and divergent validity was assessed using bivariate correlations conducted in spss. Results suggest that the scale is a unidimensional and reliable measure of physician support for SSE. Given the uncertainty regarding the optimal frequency of SSE for at-risk individuals, we recommend that future psychometric evaluations of this scale consider tailoring items according to the most up-to-date research on SSE effectiveness.

Supportive care needs and distress in patients with non-melanoma skin cancer: Nothing to worry about?

PURPOSE: There is a paucity of psychosocial research on non-melanoma skin cancer (NMSC) despite the fact that these malignancies mainly develop on the head and neck, frequently recur, and are associated with an increased risk for other cancers. The current study aims to respond to this gap in the scholarship by determining the prevalence of supportive care needs and examining the relationship between patients' needs and distress. METHOD: A cross-sectional research protocol included a consecutive sample of 60 patients with squamous and/or basal cell carcinomas who completed a survey comprised of the Skin Cancer Index (SCI), the Hospital Anxiety and Depression Scale (HADS), the Supportive Care Needs (SCNS) Survey, an inquiry about informational needs regarding skin cancer prevention, and a socio-demographic questionnaire. RESULTS: More than half of the patients indicated unmet needs, most frequently endorsing moderate and high needs for help with: the prevention of future skin cancers, the health system and informational matters. Psychological needs were strongly associated with skin cancer-specific and general distress. Higher levels of anxious and depressive symptoms were related to greater patient needs across all domains. CONCLUSIONS: Despite NMSC not being life threatening in most cases, there is a significant proportion of patients, who have unmet supportive care needs and experience heightened distress levels. This study raises awareness for health care professionals to be vigilant about the supportive care needs and the psychological health of patients with non-melanoma skin cancer.