RESUMEN
Background: Endometriosis, a systemic chronic inflammatory condition which has no cure, has a high symptom burden that can negatively impact every facet of life. Given the absence of a gold-standard treatment, the best symptom management regimen in endometriosis is heavily reliant on a patient's values and preferences, making shared decision-making (SDM) vital. However, a comprehensive patient decision aid (PtDA) intervention that could facilitate patient decision-making and promote SDM is lacking in endometriosis, and there is little research on the decisional support needs of individuals with this condition. This qualitative study aimed to explore healthcare professional (HP) perspectives of their clients' decisional support needs when choosing treatments to manage endometriosis symptoms, with a view to evaluating the need for a PtDA. Methods: Australian HPs identified as specialising in endometriosis care (N = 13) were invited to participate in a short interview over the Internet by phone. Questions focussed on perceived facilitators and challenges of decision-making when choosing treatments for endometriosis. Transcribed qualitative data were thematically analysed and verified by multiple coders, using the template approach. Results: Four themes were identified: (1) Identifying and setting priorities; (2) HPs' lack of time and perceived lack of knowledge; (3) Patient-centred care and SDM, including patient capacity; and (4) Decision-making blinded by hope. This is the first known study to explore HPs' perspectives on patient decision-making challenges in endometriosis. Discussion: Findings draw attention to the difficulties people with endometriosis experience when assessing and choosing treatments, highlighting the need for a comprehensive PtDA intervention to support this decision-making.
RESUMEN
OBJECTIVE: Prostate cancer hormonal treatments (e.g. androgen deprivation therapy) yield clinical benefits. However, there is increasing evidence these treatments may adversely impact cognitive functioning. This study aimed to qualitatively characterise the nature and impact of cognitive difficulties following these treatments. METHODS: Prostate cancer survivors (PCS) self-reporting cognitive difficulties following hormonal treatments (via an online survey) and their partners were invited to participate in semi-structured interviews. Telephone or videoconferencing interviews were conducted, then transcribed, double-coded and analysed using the Framework Method, following the principles of Interpretative Phenomenological Analysis. RESULTS: Eleven participants (six PCS and five partners) were interviewed. PCS reported a range of cognitive difficulties, verified by their partners, including forgetfulness, "fogginess", fatigue and slowed processing speed. For some PCS, word-finding difficulties, tangential speech and memory problems were apparent during interviews. The aetiology of the reported cognitive difficulties was unclear as it was attributed to a possible combination of cancer treatments, compounding side-effects (e.g. fatigue, sleep problems, hot flashes), exacerbation of pre-existing conditions and/or age-related changes. Cognitive difficulties were reported to have led to shifts in self-perception, interpersonal dynamics and increased emotionality. Engagement in cognitively-stimulating activities and reliance on compensatory strategies were reported to be helpful in managing some cognitive difficulties. All participants endorsed the potential benefits of neuropsychological intervention. CONCLUSIONS: There are a diverse range of cognitive difficulties following hormonal treatments for prostate cancer experienced by PCS and their partners. Understanding the impact of these difficulties is important for the development of targeted neuropsychological interventions.
Asunto(s)
Antagonistas de Andrógenos , Supervivientes de Cáncer , Neoplasias de la Próstata , Humanos , Masculino , Neoplasias de la Próstata/tratamiento farmacológico , Neoplasias de la Próstata/psicología , Anciano , Persona de Mediana Edad , Antagonistas de Andrógenos/efectos adversos , Supervivientes de Cáncer/psicología , Antineoplásicos Hormonales/efectos adversos , Disfunción Cognitiva/etiología , Disfunción Cognitiva/inducido químicamente , Investigación Cualitativa , Entrevistas como Asunto , Femenino , Encuestas y CuestionariosRESUMEN
OBJECTIVES: This study aimed to describe the adaptation of a group cognitive rehabilitation program for prostate cancer survivors (PCS) via telehealth delivery using a codesign approach with PCS experiencing cancer-related cognitive impairment. The Theoretical Domains Framework (TDF) also informed the intervention development. METHODS: Intervention development consisted of three steps: 1) Adapting an existing cancer-related cognitive rehabilitation program for PCS; 2) Conducting a codesign focus group workshop to gather feedback that was analyzed using a template approach; and 3) Incorporation of consumer feedback to refine the program for future piloting in PCS. Components of the finalized intervention were mapped onto the TDF domains. RESULTS: Six PCS were involved in the codesign focus group workshop, providing feedback on program structure, the topics and its order, and rehabilitation activities. A manualized four-week online group cognitive rehabilitation program titled "Promoting Cognitive Wellbeing in Prostate Cancer Survivors (ProCog)" was developed. Four sessions of 2-hours' duration were designed exploring: cognitive/brain functions; the impact of cancer treatments and ageing; the relationship between thoughts, feelings and behaviors; values-based goal-setting; and skills/strategies to manage fatigue and improve attention, memory, aspects of executive functioning, and emotional functioning. CONCLUSIONS: Consumer input and guidance from the TDF ensures a robust development process for the online ProCog intervention, designed for and with PCS experiencing cognitive difficulties. As an important initial step before piloting, this adaptation and development process ensures that ProCog addresses consumer needs and preferences and targets factors increasing behavior change. IMPLICATIONS FOR NURSING PRACTICE: This research raises awareness of possible cancer-related cognitive impairments in prostate cancer survivors and strategies for rehabilitation. ProCog is an accessible online intervention that nurses can use to refer patients needing cognitive rehabilitation.
RESUMEN
Currently, there are no resources to support culturally and linguistically diverse (CALD) women with breast cancer to make decisions about undergoing breast reconstruction (BR). This study evaluated the usability and acceptability of decision aids (DAs) for Vietnamese- and Arabic-speaking women. This two-phase qualitative recruited Vietnamese- (Phase 1) and Arabic-speaking (Phase 2) adult (age ≥ 18 years) women who were diagnosed with breast cancer and could read Vietnamese/Arabic. Women participated in either think-aloud telephone interviews (Phase 1) or semi-structured telephone interviews (Phase 2) and provided feedback on the DA. Interviews were audio-recorded, translated, and transcribed from Vietnamese/Arabic to English, and inductive thematic analysis was undertaken. Additionally, Arabic-speaking women completed the Preparation for Decision Making (PrepDM) scale in Round 2. Twenty-five women were recruited in two phases (Phase 1: Vietnamese-speaking women, n = 14; Phase 2: Arabic-speaking, n = 11). Three themes were developed in Phase 1: (1) DA content and reception; (2) linguistic attributes and cultural appropriateness; and (3) factors that improve the DAs' impact. Three themes were developed in Phase 2: (1) varying perceptions of DA content; (2) linguistic and cultural suitability of information; and (3) impact of DA on decision making. Women from both phases identified areas for improvement: minimising the use of medical terminology, considering the cultural taboos associated with the word 'breast', and addressing remaining information gaps. Both language DAs were generally perceived as acceptable and useful in providing information about BR options and prompting women's reflections about the suitability of BR as part of their treatment. The mean PrepDM score for Arabic-speaking women in Round 2 was 4.8/5 (SD = 0.3). Further work is needed to ensure that culturally adapted DAs take into account the myriad of information needs and health literacy levels. The key role of healthcare professionals in shared decision making among CALD populations should also be considered.
Asunto(s)
Neoplasias de la Mama , Técnicas de Apoyo para la Decisión , Mamoplastia , Humanos , Femenino , Persona de Mediana Edad , Adulto , Neoplasias de la Mama/cirugía , Neoplasias de la Mama/psicología , Mamoplastia/métodos , Mamoplastia/psicología , Vietnam , Australia , Toma de Decisiones , Árabes , Proyectos Piloto , Anciano , Pueblos del Sudeste AsiáticoRESUMEN
Hormonal treatments (HT) for prostate cancer (e.g., androgen deprivation therapy) yield clinical and survival benefits, yet adverse cognitive changes may be a side effect. Since psychosocial factors are largely modifiable, interventions targeting these factors may help mitigate these adverse cognitive effects. This systematic review aimed to identify a range of psychosocial factors associated with cognitive function in individuals with prostate cancer undergoing HT and to determine whether these factors mitigate or exacerbate this effect. Applying PRISMA guidelines, a comprehensive search of relevant databases conducted in September 2023 using terms related to prostate cancer, hormone therapy, and cognitive outcomes was undertaken. The search yielded 694 unique abstracts, with 11 studies included for analysis examining the relationship between cognitive function and the following psychosocial factors: psychological distress, fatigue, insomnia, and coping processes. Findings were mixed with only two studies reporting significant associations between cognitive performance with fatigue and depression. Three studies that included measures of perceived cognitive function identified associations with depression, anxiety, fatigue, insomnia, illness threat appraisals, and coping styles. However, no studies found evidence for an association between self-reported and objective measures of cognitive functioning. Evidence regarding the association of interpersonal factors is lacking. Moreover, whether these factors mitigate or exacerbate the effect of HT on cognitive function still needs to be determined. Overall, the research exploring the association between psychosocial factors and cognitive function in prostate cancer survivors undergoing HT is still in its infancy. Further research is required to optimize the implementation of neuropsychological interventions for prostate cancer survivors.
RESUMEN
PURPOSE: Breast cancer patients face complex decisions about immediate breast reconstruction (BR) after mastectomy. We evaluated the efficacy of an online decision aid in improving the decision-making process, decision quality and health outcomes in breast cancer patients considering immediate BR. METHODS: In a multicenter randomized controlled trial, patients were allocated to either the intervention group receiving care-as-usual (CAU) with access to an online decision aid, or the control group receiving CAU with an information leaflet. The primary outcome was decisional conflict. Secondary outcomes assessed the process of decision making (e.g. preparation for decision making, satisfaction with information), decision quality (decision regret, knowledge) and health outcomes (e.g. satisfaction with BR outcomes, body image). Patients completed questionnaires at baseline (T0), 1 week after consultation with a plastic surgeon (T1), 3 months (T2), and 12 months post-surgery (T3). RESULTS: We included 250 patients. Decisional conflict decreased over time in both groups, with no between group differences. Intervention participants felt better prepared for decision making than controls (P = .002). At T2, 87% of intervention participants were (very) satisfied with the information about BR, compared to 73% of control participants (P = .011). No significant between group differences were observed in any other outcome. CONCLUSION: Our online decision aid was as effective in reducing decisional conflict as an information leaflet about immediate BR after mastectomy. However, the decision aid substantially improved the decision-making process by better preparing breast cancer patients for decisions about immediate BR.
RESUMEN
BACKGROUND: Research has identified that living with the chronic inflammatory disease endometriosis adversely impacts social functioning and interpersonal relationships, specifically, feelings of loneliness and a lack of perceived social support. Commonly experienced body image disturbance (BID), combined with the anticipation of endometriosis-related stigma from others, may result in further social withdrawal. This study aimed to quantitatively investigate the association between BID and social functioning (loneliness and diminished perceived social support), and the potential moderating effect of anticipated stigma on these associations. METHOD: Participants (N = 212) with a self-reported endometriosis diagnosis completed an online questionnaire measuring social and emotional loneliness, perceived social support, BID, anticipated stigma and demographic and medical characteristics. RESULTS: Mean scores indicated high levels of BID, emotional loneliness and diminished perceived social support. Bootstrapped multivariable regression analyses indicated that BID was significantly associated with greater emotional loneliness and lower perceived social support. BID was also associated bivariately with greater social loneliness. Anticipated stigma from healthcare workers moderated the association of BID with perceived social support, such that poorer perceived support was reported when anticipated stigma was high, despite the presence of minimal BID. CONCLUSION: These findings highlight the psychological challenges of living with endometriosis in terms of highly prevalent BID, in the context of feeling lonely and poorly supported. The further negative impact of anticipated stigma suggests that psychosocial interventions may benefit from additionally targeting these perceptions of stigma.
RESUMEN
Gynaecological conditions (e.g., endometriosis, PCOS) result in bodily changes that negatively impact body image. Psychological interventions (e.g., CBT, psychoeducation) have shown promise in reviews with the general population for alleviating body image concerns. This systematic review and meta-analysis aims to provide asynthesis of the impact of psychological interventions for reducing body image concerns for individuals with gynaecological conditions. Electronic databases were searched for relevant psychological intervention studies with body image outcomes. Twenty-one eligible studies were included in the systematic review (ten were included in a random-effects meta-analysis). Studies included participants (N = 1483, M = 71.85, SD = 52.79) with a range of gynaecological conditions, ages (Mage = 35.08, SD = 12.17) and cultural backgrounds. Most included studies reported at least one positive effect with the meta-analysis indicating psychological interventions were moderately superior to control conditions for reducing body image concerns (SMD -.41, 95% CI [-0.20 -0.62]). However, there was a high risk of bias and moderate heterogeneity. Results suggest psychological interventions may hold promise for reducing body image concerns among individuals gynaecological conditions in the short term. Further, preliminary support was found for the use of theory-guided psychological interventions delivered in group settings in particular, with further research needed on optimal intervention length and particular psychotherapeutic approach.
RESUMEN
BACKGROUND: COVID-19 lockdowns caused widespread closures of supportive care services for breast cancer survivors in Australia. In a randomized controlled trial, our team's lifestyle-focused, evidence-based SMS text message support program (EMPOWER-SMS COVID-19) was found to be acceptable and useful for breast cancer survivors, and it was ready for rapid widespread delivery. OBJECTIVE: This study aims to evaluate the reach (uptake) of an adapted 3-month lifestyle-focused SMS text message program (EMPOWER-SMS COVID-19) and barriers and enablers to implementation using the Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) framework. METHODS: A mixed methods pre-post study was conducted to evaluate the EMPOWER-SMS COVID-19 program. The study evaluated the following aspects: (1) reach/representativeness, which refers to the proportion of participant enrollment (ie, number enrolled/number that visited the study website) and demographics (eg, age, sex, ethnicity, time since completing treatment, Index of Relative Socio-economic Advantage and Disadvantage [IRSAD; quintile 1, which refers to most disadvantaged areas, to quintile 5, which refers to least disadvantaged areas, and remoteness); (2) effectiveness, in which participant engagement and acceptability were evaluated using SMS text message reply data and a feedback survey (5-point Likert scale and free-text responses); (3) adoption, which corresponds to the proportion of organizations or health professionals who agreed to promote the program; (4) implementation fidelity and maintenance, which evaluated SMS text message delivery data, opt-outs, costs, and adaptations. Quantitative data were summarized using means and SDs or frequencies and percentages, while qualitative data were analyzed thematically. RESULTS: With regard to the reach/representativeness of the program, 841/1340 (62.8%) participants enrolled and provided electronic consent. Participants had a mean age of 58.8 (SD 9.8; range 30-87) years. According to the data collected, most participants identified as female (837/840, 99.6%) and White (736/840, 87.6%) and nearly half (418/841, 49.7%) finished treatment ≤18 months ago. Most resided in major cities (574/838, 68.5%) and 30% (251/838) in IRSAD quintile 1 or 2. In terms of effectiveness, 852 replies were received from 511 unique participants (median 1; range 1-26). The most common replies were participants stating how they heard about the program (467/852, 54.8%) or "thank you" (131/852, 15.4%). None of the replies contained urgent safety concerns. Among participants who provided feedback (449/841, 53.4%), most "(strongly) agreed" the SMS text messages were easy to understand (445/448, 99.3%), useful (373/440, 84.8%), helped participants feel supported (388/448, 86.6%), and motivated participants to be physically active (312/445, 70.1%) and eat healthier (313/457, 68.5%). Free-text responses revealed 5 factors influencing engagement: (1) feeling supported and less alone, (2) motivation and reassurance for health self-management, (3) the variety of information, (4) weblinks to information and resources, and (5) the option to save the SMS text messages. Concerning adoption, 50% (18/36) of organizations/health professionals agreed to promote the program. With regard to implementation/maintenance, SMS text messages were delivered as planned (97.43% [41,257/42,344] of SMS text messages were successfully delivered) with minimal opt-outs (62/838, 7.4%) and low cost (Aus $15.40/participant; Aus $1=US $0.67). No adaptations were made during the intervention period. Postintervention adaptations included adding weblinks and participant-selected customizations. CONCLUSIONS: EMPOWER-SMS COVID-19 was implemented quickly, had a broad reach, and had high engagement and acceptability among socioeconomically diverse participants. The program had high fidelity, low cost, and required minimal staff oversight, which may facilitate future implementation. However, further research is needed to evaluate barriers and enablers to adoption and implementation for health professionals and strategies for long-term maintenance.
Asunto(s)
Neoplasias de la Mama , COVID-19 , Supervivientes de Cáncer , Envío de Mensajes de Texto , Humanos , Femenino , Persona de Mediana Edad , Control de Enfermedades TransmisiblesRESUMEN
PURPOSE: This study aimed to investigate the supportive care needs of Australian melanoma patients and their caregivers to form the basis for improving services. METHODS: General and melanoma-related supportive care needs in melanoma patients were measured using the SCNS-SF34 and SCNS-M12 respectively, whereas caregivers completed the SCNS-P&C. Patients also completed the MCQ-28 and FCRI-9, with all participants completing the QLQ-C30, DASS-21, and questions measuring utilisation and preference for supportive health services. Multivariable stepwise logistic regression was used to identify variables associated with unmet needs in melanoma patients. RESULTS: A total of 56 early-stage patients, 100 advanced-stage patients, and 37 caregivers participated. At least three-quarters ([Formula: see text] 75%) of each participant group reported at least one unmet need. Of the ten most reported unmet needs in each participant group, at least six ([Formula: see text] 60%) were related to psychological and emotional well-being, with access to a psychologist the most desired service (> 25%). Fear of cancer recurrence was equally prevalent in both patient groups at a level indicative of need for intervention. Advanced-stage patients reported significantly (p < 0.05) more unmet psychological, physical and daily living, and sexuality needs, and significantly (p < 0.05) worse functioning than early-stage patients. CONCLUSION: Australian melanoma patients and caregivers report substantial unmet supportive care needs, particularly regarding their psychological and emotional well-being. Psychological and emotional well-being services, such as access to a clinical psychologist or implementation of patient-reported outcome measures, should be incorporated into routine melanoma care to address unmet patient and caregiver needs and improve well-being.
Asunto(s)
Cuidadores , Melanoma , Humanos , Estudios Transversales , Cuidadores/psicología , Recurrencia Local de Neoplasia , Encuestas y Cuestionarios , Australia , Calidad de Vida/psicología , Apoyo Social , Necesidades y Demandas de Servicios de SaludRESUMEN
OBJECTIVE: A high symptom burden systemic inflammatory disorder, endometriosis typically entails both medical management and self-management strategies. The COVID-19 pandemic in Australia precipitated changes to healthcare provision, societal restrictions, and negative psychosocial outcomes particularly for those managing chronic illnesses (e.g., endometriosis). This study's objective was to address the following questions: "How have endometriosis self-management strategies changed since the outbreak of COVID-19, and what are the consequences of these changes?" METHODS: In total, 21 respondents residing in Australia during the COVID-19 pandemic participated in a semi-structured interview following completion of an online survey advertised by Endometriosis Australia. In the survey, respondents provided demographic and clinical information, and psychological distress was assessed. Interviews were conducted online and recorded for transcribing. Transcribed data were thematically analyzed using the template method. RESULTS: Qualitative analysis identified five themes: i) Maintaining Relationships with Health Professionals, ii) Altered Information Seeking Strategies, iii) More Autonomous Decision Making, iv) Diminished Self-Care and Behaviour Change, and v) Shifted Priorities. Respondents reported disruptions to, and uncertainties within, the healthcare system that precipitated adverse effects upon their ability to manage endometriosis and mental health. CONCLUSIONS: These findings suggest that for many, COVID-19-related disruptions to the healthcare system and social isolation adversely impacted their endometriosis self-management. Targeted interventions are needed to address the consequences of these, including providing reliable information to support informed decision-making regarding endometriosis self-management, and assisting with mental health challenges arising from COVID-19-related social isolation.
Asunto(s)
COVID-19 , Endometriosis , Automanejo , Femenino , Humanos , COVID-19/epidemiología , Endometriosis/terapia , Endometriosis/epidemiología , Pandemias , IncertidumbreRESUMEN
Introduction: As a high symptom burden chronic condition, endometriosis is associated with diminished quality of life (QoL) and psychological distress. The EndoSMS text message intervention was developed to inform and support individuals living with endometriosis. The primary aim of this study is to assess the acceptability, feasibility and preliminary efficacy of EndoSMS, to improve endometriosis-specific QoL and reduce psychological distress in a randomised controlled trial, compared with care as usual. We will additionally assess the impact of EndoSMS on self-efficacy for managing endometriosis. Methodology: A two-arm parallel pilot randomised controlled trial with waitlist control was conducted. Baseline assessments included QoL, psychological distress, self-efficacy, demographic and medical variables. Following baseline survey completion, participants were randomised to either the Intervention (EndoSMS: 3-months of text messaging) or Control condition. At 3-month follow-up, all participants completed an online survey reassessing outcomes, and Intervention participants provided quantitative and qualitative user feedback on EndoSMS. Results: Data collection commenced on 18 November 2021 and was completed on 30 March 2022. Descriptive statistics will be used to analyse feasibility and acceptability of the intervention. Preliminary efficacy analyses will be conducted using linear mixed models for QoL, psychological distress and self-efficacy outcomes. Subgroup analyses will also be conducted for typically underserved populations (e.g., rural/regional). Conclusion: This pilot will provide acceptability, feasibility and preliminary efficacy evidence for the impact of a supportive text messaging program for endometriosis. It will contribute to understanding how to optimally support individuals in living with and managing their endometriosis. Trial Registration: Australian New Zealand Clinical Trials Registry.
RESUMEN
BACKGROUND: Often considered an "invisible disability", hearing loss is one of the most prevalent chronic diseases and the third leading cause for years lived with disability worldwide. Hearing loss has substantial impacts on communication, psychological wellbeing, social connectedness, cognition, quality of life, and economic independence. The Hearing impairment in Adults: a Longitudinal Outcomes Study (HALOS) aims to evaluate the: (1) impacts of hearing devices (hearing aids and/or cochlear implants), (2) differences in timing of these interventions and in long-term outcomes between hearing aid and cochlear implant users, and (3) cost-effectiveness of early intervention for adult-onset hearing loss among hearing device users. MATERIALS AND METHODS: HALOS is a mixed-methods study collecting cross-sectional and longitudinal data on health and social outcomes from 908 hearing aid and/or cochlear implant users aged ≥40 years, recruited from hearing service providers across Australia. The quantitative component will involve an online survey at baseline (time of recruitment), 24-months, and 48-months and will collect audiological, health, psychosocial, functional and employment outcomes using validated instruments. The qualitative component will be conducted in a subset of participants at baseline and involve semi-structured interviews to understand the patient journey and perspectives on the Australian hearing service model. ETHICS: This study has been approved by the Macquarie University Human Research Ethics Committee (ID: 11262) and Southern Adelaide Local Health Network (ID: LNR/22/SAC/88). Dissemination of results: Study findings will be disseminated to participants via a one-page summary, and to the public through publications in peer-reviewed journals and presentations at conferences. TRIAL REGISTRATION: Australia New Zealand Clinical Trial Registry (ANZCTR) registration number: ACTRN12622000752763.
Asunto(s)
Implantación Coclear , Sordera , Audífonos , Pérdida Auditiva , Adulto , Humanos , Australia/epidemiología , Estudios Transversales , Pérdida Auditiva/psicología , Calidad de VidaRESUMEN
BACKGROUND: Decision aids are useful adjuncts to clinical consultations for women considering breast reconstruction. This study compared the impact of two online decision aids, the Breast RECONstruction Decision Aid (BRECONDA) and the Alberta Health Services (AHS) decision aid, on decisional conflict, decisional satisfaction, and decisional regret. METHODS: This randomized controlled trial included 60 women considering whether or not to undergo breast reconstruction. Two online decision aids, the AHS and the BRECONDA, were compared using randomized two-arm equal allocation. Participants responded to questionnaires at baseline, after the first and second consultations, and at 6 weeks and 6 months after deciding to, or not to, undergo reconstruction. Change in decisional conflict scores was compared between the BRECONDA and the AHS decision aid. Secondary outcomes included decisional regret and decisional satisfaction. RESULTS: Both groups were similar in demographic, clinical, and behavioral characteristics. Women spent more time consulting the BRECONDA in comparison to women using the AHS decision aid (56.7 ± 53.8 minutes versus 28.4 ± 27.2 minutes; P < 0.05). Decisional conflict decreased (P < 0.05), and decisional satisfaction improved over time in both groups (P < 0.05). However, there were no differences based on the type of decision aid used (P > 0.05). Both decision aids had a similar reduction in decisional regret (P > 0.05). CONCLUSIONS: Decision aids decrease decisional conflict and improve decisional satisfaction among women considering breast reconstruction. Physicians should therefore offer patients access to decision aids as an adjunct to breast reconstruction consultations to help patients make an informed decision. CLINICAL QUESTION/LEVEL OF EVIDENCE: Therapeutic, I.
Asunto(s)
Técnicas de Apoyo para la Decisión , Mamoplastia , Humanos , Femenino , Toma de Decisiones , Satisfacción del Paciente , Emociones , Participación del PacienteRESUMEN
BACKGROUND: Endometriosis is a chronic reproductive disease manifesting in physical symptoms including pain, abdominal swelling, altered bowel and bladder function, and fatigue. These symptoms potentially threaten body image regarding subjective perceptions of functional, appearance, and sensory aspects of one's body. The aim of this study was to qualitatively understand how endometriosis impacts on affective and perceptual aspects of body image. METHOD: Participants (N = 40) were recruited through endometriosis consumer organizations. In an online survey, participants completed demographic and health history questions, then provided written narratives about body image-related impacts of their endometriosis in response to open-ended questions. These data were thematically analyzed using the template approach. FINDINGS: The majority of participants (Mage = 28.3 years) were employed part-time, diagnosed on average for 4.2 years, and reported pelvic pain and bloating, fatigue, and nausea symptoms. Thematic analysis yielded three themes including My Body is a Barrier, Needing to Hide Myself, and Body as Healer and Teacher, all of which reflected affective and perceptual aspects of body image. CONCLUSION: These findings highlight wide-ranging body image-related impacts of endometriosis, suggesting the need for targeted interventions to address these concerns.
Asunto(s)
Endometriosis , Femenino , Humanos , Adulto , Endometriosis/complicaciones , Endometriosis/diagnóstico , Endometriosis/psicología , Imagen Corporal , Dolor Pélvico/diagnóstico , Dolor Pélvico/psicologíaRESUMEN
PURPOSE: The aim of this study is to evaluate the efficacy, feasibility and acceptability of a co-designed lifestyle-focused text message intervention (EMPOWER-SMS) for breast cancer survivors' self-efficacy, quality of life (QOL), mental (anxiety, depression, stress) and physical (endocrine therapy medication adherence, physical activity, BMI) health. METHODS: Single-blind randomised controlled trial (1:1) comparing EMPOWER-SMS to usual care at 6-months (intention-to-treat). SETTING: public Breast Cancer Institute (Sydney, Australia). ELIGIBILITY CRITERIA: adult (> 18 years) females, < 18-months post-active breast cancer treatment (stage I-III), owned a mobile phone, written informed consent. PRIMARY OUTCOME: Self-Efficacy for Managing Chronic Disease Scale at 6 months. Process data: message delivery analytics, cost, and post-intervention survey. RESULTS: Participants (N = 160; mean age ± SD 55.1 ± 11.1 years) were recruited 29th-March-2019 to 7th-May-2020 and randomised (n = 80 EMPOWER-SMS: n = 80 control). Baseline mean self-efficacy was high (I: 7.1 [95%CI 6.6, 7.5], C: 7.4 [7, 7.8]). Six-month follow-up: no significant differences between groups for self-efficacy (I: 7.6 [7.3, 7.9], C: 7.6 [7.3, 7.9], adjusted mean difference 0 (95%CI 0.4, 0.4), QOL, mental health, physical activity, or BMI. Significantly less EMPOWER-SMS participants missed ≥ 1 endocrine therapy medication doses compared to control (I: 3/42[7.1%], C: 8/47[17.0%], Adjusted RR 0.13 [95%CI 0.02, 0.91]). Text messages were delivered successfully (7925/8061, 98.3%), costing $13.62USD/participant. Participants strongly/agreed EMPOWER-SMS was easy-to-understand (64/64; 100%), useful (58/64; 90.6%), motivating for lifestyle change (43/64; 67.2%) and medication adherence (22/46; 47.8%). CONCLUSION: EMPOWER-SMS was feasible, inexpensive, acceptable for delivering health information to breast cancer survivors between medical appointments, with minor improvements in medication adherence. IMPLICATIONS FOR CANCER SURVIVORS: Text messages offer a feasible strategy for continuity-of-care between medical appointments.
Asunto(s)
Neoplasias de la Mama , Supervivientes de Cáncer , Envío de Mensajes de Texto , Adulto , Humanos , Femenino , Calidad de Vida , Neoplasias de la Mama/tratamiento farmacológico , Método Simple Ciego , Evaluación de Resultado en la Atención de SaludRESUMEN
Endometriosis is a chronic systemic disease affecting 1 in 10 people assigned female at birth, that can result in appearance-based and functional bodily changes which can negatively impact body image. Empirical evidence supports the body dissatisfaction-driven hypothesis that negative body image leads to greater depressive symptoms; but potential underlying mechanisms are under-researched. This prospective study investigated the mediating role of two theoretically-derived intervening factors, self-esteem and rumination, in individuals living with endometriosis who typically report high rates of body image concerns and depressive symptoms. Initially, 996 participants completed the first online survey (T0) assessing demographic, medical and psychological factors. Of these, 451 completed surveys at 1-month (T1) and 2-months (T2) follow-up assessing self-esteem, rumination and depression. Bootstrapped analyses with full-information maximum likelihood estimation indicated that poor body image (T0) predicted greater depressive symptoms over time (T2). Self-esteem (T1), but not rumination (T1), mediated the body image-depression relationship. These results provide support for the body dissatisfaction-driven hypothesis and further identify that self-esteem is a key meditating factor. This highlights the importance of addressing self-esteem in body image focused interventions.
Asunto(s)
Imagen Corporal , Endometriosis , Recién Nacido , Femenino , Humanos , Imagen Corporal/psicología , Depresión/psicología , Estudios Prospectivos , AutoimagenRESUMEN
PURPOSE: Ongoing supportive care using electronic health (eHealth) interventions has the potential to provide remote support and improve health outcomes for patients with breast cancer. This study aimed to evaluate the effectiveness of eHealth interventions on patient-reported outcomes (quality of life [QOL], self-efficacy, and mental or physical health) for patients during and after breast cancer treatment and patient-reported experience measures (acceptability and engagement). METHODS: Systematic review with meta-analyses (random-effects model) of randomized controlled trials was conducted following Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines. Nine databases were searched using a prespecified search strategy. Patient-directed eHealth interventions for adult patients during or after active breast cancer treatment measuring QOL, self-efficacy, and mental (depressive, anxiety, and distress symptoms) or physical (physical activity, nutrition, and fatigue) health outcomes were included. Data from eligible full-text articles were independently extracted by six observers. RESULTS: Thirty-two unique studies (4,790 patients) were included. All were health self-management interventions, and most were multicomponent (videos, forums, and electronic reminder systems) websites. Meta-analyses revealed a significant effect of eHealth interventions on QOL (standardized mean difference [SMD], 0.20 [95% CI, 0.03 to 0.36]), self-efficacy (SMD, 0.45 [95% CI, 0.24 to 0.65]), distress (SMD, -0.41 [95% CI,-0.63 to -0.20]), and fatigue (SMD, -0.37 [95% CI, -0.61 to -0.13]). Twenty-five studies (78.1%) measured patient-reported experience measures. Acceptability (n = 9) was high, with high ratings for satisfaction (range, 71%-100%), usefulness (range, 71%-95%), and ease-of-use (range, 73%-92%). Engagement (n = 25) decreased over time, but disease-focused information and interactive support were most engaging. CONCLUSION: eHealth interventions may provide an acceptable and effective strategy for improving QOL, distress, self-efficacy, and fatigue among patients with breast cancer.