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1.
BMC Cancer ; 24(1): 60, 2024 Jan 11.
Artigo em Inglês | MEDLINE | ID: mdl-38212706

RESUMO

BACKGROUND: Although mastectomy is the standard treatment modality for breast cancer patients in Ethiopia, our previous study revealed that one in five patients do not receive the recommended procedure, half due to patient refusal or lack of returning to the hospital. Therefore, this study aimed to explore reasons for refusing mastectomy and identify challenges among breast cancer patients in Ethiopia. METHODS: An explorative qualitative study was conducted in four hospitals located in the towns of Woliso, Butajira, Hossana, and Assela. A total of 14 in-depth interviews (IDIs) and eight focus group discussions (FGDs) were held with breast cancer patients, patient relatives, and health professionals. Four semi-structured interview guides were used to facilitate the IDIs and FDGs. All recorded IDIs and FGDs were transcribed and translated verbatim and entered in NVivo 12 software. Emerging ideas were categorised and explained using an inductive content analysis approach. RESULTS: Our participants reported that particularly elderly and very young women refuse to have mastectomy. The main reasons identified in this study were summarised into six themes: (i) fear of the surgical procedure, (ii) religious beliefs and practice, (iii) utilisation of traditional treatments, (iv) in relation to having a baby and breastfeeding their children (young patients often request to remove only the lump, leaving their breast tissue intact), (v) lack of awareness about the disease, and (vi) sociocultural factors and advice from the community that influence women, since breasts are considered an attribute of femininity, beauty, and motherhood. In addition, knowing someone who died after mastectomy emerged as a main reason for not having breast cancer surgery. CONCLUSIONS: High refusal rate for mastectomy has direct implication on increased breast cancer mortality. Hence, expansion of radiotherapy service is instrumental to initiate breast-conserving surgery as an alternative surgical procedure, especially for young women with early-stage breast cancer. Involving religious leaders, traditional healers, and breast cancer survivors could be an effective strategy to persuade newly diagnosed breast cancer patients. Addressing individual patient psychosocial needs and preferences may substantially improve retention of breast cancer patients in the health system.


Assuntos
Neoplasias da Mama , Mastectomia , Criança , Humanos , Feminino , Idoso , Mastectomia/métodos , Neoplasias da Mama/cirurgia , Neoplasias da Mama/psicologia , Etiópia , Mastectomia Segmentar , Grupos Focais
2.
Lupus ; 33(6): 615-628, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38545763

RESUMO

OBJECTIVE: To identify determinants of medication non-adherence in a Swedish population of systemic lupus erythematosus (SLE). METHODS: Patients with SLE from Karolinska and Örebro University Hospitals participated in a survey-based cross-sectional study. Demographics, disease activity, organ damage, HRQoL (LupusQol, EQ-5D-5 L), medication non-adherence (<80% on CQR-19 or MASRI) and beliefs about medicines (BMQ) were registered. MASRI was used to report adherence to different drugs/drug classes, categorised into (i) antimalarial agents (AMA), (ii) glucocorticoids and (iii) other SLE medications. Multivariable logistic regression adjusted for age, sex, disease activity and organ damage. RESULTS: Among 205 respondents, the median age was 52.0 years (IQR: 34.0-70.0), 86.3% were women, 66.8% were non-adherent to their medications according to CQR-19, and 6.6% and 6.3% were non-adherent to AMA and glucocorticoids, respectively, according to MASRI. Positive beliefs about glucocorticoids (OR; 95% CI: 0.77; 0.59-0.99; p = .039) and medications overall (0.71; 0.52-0.97; p = .029) were protective against non-adherence to glucocorticoids. Anxiety/depression (3.09; 1.12-8.54; p = .029), medication concerns (1.12; 1.05-1.20; p < .001) and belief that medications are overused (1.30; 1.15-1.46; p < .001) or harmful (1.36; 1.19-1.56; p < .001) were associated with medication non-adherence (CQR-19); beliefs in the necessity of medications (0.73; 0.65-0.82; p < .001) and positive beliefs in medications were protective (0.72; 0.60-0.86; p < .001). No associations were found between other investigated factors and medication non-adherence. CONCLUSIONS: Beliefs about medications were a major determinant of medication non-adherence. Patient education may help alleviate the negative impact of misinformation/unawareness on adherence.


Assuntos
Lúpus Eritematoso Sistêmico , Humanos , Feminino , Pessoa de Meia-Idade , Masculino , Lúpus Eritematoso Sistêmico/tratamento farmacológico , Lúpus Eritematoso Sistêmico/complicações , Suécia , Estudos Transversais , Adesão à Medicação , Inquéritos e Questionários , Glucocorticoides/uso terapêutico
3.
Support Care Cancer ; 32(9): 614, 2024 Aug 27.
Artigo em Inglês | MEDLINE | ID: mdl-39190138

RESUMO

PURPOSE: Among patients with cancer, a comorbid mental disorder is associated with higher mortality. This could be partially attributed to reduced access to oncological care, sometimes due to treatment refusal. Recommendations were issued in 2018 by the French and Francophone Society of Psycho-Oncology concerning the management of oncological treatment refusal. This study aimed to examine oncology residents' view on psychiatric assessment in this context. METHODS: In February 2021, we conducted a descriptive, observational, cross-sectional pilot study among French residents involved in oncology regarding their management of cancer treatment refusal and the importance they assign to psychiatric assessment, using an online questionnaire with 12 multiple-choice questions. RESULTS: Among 87 respondents, only 35.6% systematically explore the history of mental disorders when facing cancer treatment refusal. Even in cases with a known history of mental disorders, only 42.5% systematically refer the patient to a psychiatrist. 96.5% of them were unaware of the 2018 recommendations. CONCLUSION: The importance given to psychiatric assessment in cases of oncological treatment refusal remains insufficient. Qualitative studies are needed to understand the underlying reasons for this refusal. The development of psychiatric consultation-liaison interventions in oncology centers is necessary to improve the management of these cases and provide appropriate training.


Assuntos
Internato e Residência , Transtornos Mentais , Neoplasias , Recusa do Paciente ao Tratamento , Humanos , Estudos Transversais , Neoplasias/psicologia , Neoplasias/terapia , Masculino , Feminino , Projetos Piloto , Inquéritos e Questionários , Transtornos Mentais/terapia , Recusa do Paciente ao Tratamento/estatística & dados numéricos , Recusa do Paciente ao Tratamento/psicologia , Adulto , França , Oncologia/métodos
4.
Support Care Cancer ; 32(6): 361, 2024 May 16.
Artigo em Inglês | MEDLINE | ID: mdl-38753165

RESUMO

PURPOSE: Significant proportions of patients either refuse or discontinue radiotherapy, even in the curative setting, leading to poor clinical outcomes. This study explores patient perceptions that underlie decisions to refuse/discontinue radiotherapy at a cancer care facility in northern Sri Lanka. METHODS: An exploratory descriptive qualitative study was carried out among 14 purposively selected patients with cancer who refused/discontinued radiotherapy. In-depth semi-structured interviews were transcribed in Tamil, translated into English, coded, and thematically analyzed. RESULTS: All participants referred to radiotherapy as "current" with several understanding the procedure to involve electricity, heat, or hot vapour. Many pointed to gaps in information provided by healthcare providers, who were perceived to focus on side effects without explaining the procedure. In the absence of these crucial details, patients relied on family members and acquaintances for information, often based on second or third-hand accounts of experiences with radiotherapy. Many felt pressured by family to refuse radiation, feared radiation, or felt ashamed to ask questions, while for others COVID-19 was an impediment. All but three participants regretted their decision, claiming they would recommend radiation to patients with cancer, especially when it is offered with curative intent. CONCLUSION: Patients with cancer who refused/discontinued radiation therapy have significant information needs. While human resource deficits need to be addressed in low-resource settings like northern Sri Lanka, providing better supportive cancer care could improve clinical outcomes and save healthcare resources that would otherwise be wasted on patient preparation for radiotherapy.


Assuntos
Neoplasias , Pesquisa Qualitativa , Recusa do Paciente ao Tratamento , Humanos , Sri Lanka , Neoplasias/radioterapia , Neoplasias/psicologia , Masculino , Feminino , Pessoa de Meia-Idade , Adulto , Idoso , Recusa do Paciente ao Tratamento/psicologia , Radioterapia/métodos , Radioterapia/psicologia , COVID-19 , Entrevistas como Assunto
5.
Support Care Cancer ; 32(6): 346, 2024 May 14.
Artigo em Inglês | MEDLINE | ID: mdl-38743121

RESUMO

BACKGROUND: Rehabilitation plays an important role in addressing the many challenges of living with cancer, but a large proportion of people with cancer do not participate in available cancer rehabilitation. Hence, reasons for non-participation in cancer rehabilitation need to be explored. OBJECTIVE: The present study undertakes a scoping review of research examining reasons for non-participation in cancer rehabilitation among people with cancer. DESIGN: A systematic search was conducted in PubMed, Scopus and CINAHL for articles published until July 2023. Included studies were hand searched for relevant references and citations. ELIGIBILITY CRITERIA: Method: Studies with qualitative, quantitative or mixed-method design. POPULATION: Studies targeting adults (> 18) living with cancer, not participating in rehabilitation. Program type: The review included all studies defining program as rehabilitation but excluded clinical trials. OUTCOME: Studies examining reasons for non-participation in available rehabilitation. DATA EXTRACTION: The extracted data included author(s)/year of publication, aim, population, information, rehabilitation type and main reasons for non-participation. RESULTS: A total of nine studies were included (n = 3 quantitative, n = 2 qualitative, n = 4 mixed methods). Reasons for non-participation included physical, psychosocial and practical aspects. The main reason across studies was 'no need for public support' related to receiving sufficient support from family and friends. All studies focused on individual reasons, and structural conditions were rarely present. CONCLUSION: Research within this field is sparse. Future research should explore how individual reasons for non-participation relate to structural conditions, especially among people in socially disadvantaged positions living with cancer.


Assuntos
Neoplasias , Humanos , Neoplasias/reabilitação , Neoplasias/psicologia
6.
Age Ageing ; 53(2)2024 02 01.
Artigo em Inglês | MEDLINE | ID: mdl-38346934

RESUMO

BACKGROUND: Few studies of the under-representation of older adults in cancer clinical trials (CTs) have encompassed the entire pathway from a trial being available in a cancer centre to the patient's invitation to participate and then agreement or refusal to participate. OBJECTIVES: The study's primary objective was to evaluate CT non-invitation and refusal rates. The secondary objectives were to identify factors associated with non-invitation and refusal and to assess experiences of CT participation from the patients' and professionals' perspectives. METHODS: Here, we used mixed methods and a socio-epidemiological approach to analyse reasons for the non-participation of eligible older patients with a solid cancer in cancer CTs in France. RESULTS: We found that non-invitation and low CT participation are mainly related to the patients' sociodemographic characteristics and living conditions (such as social isolation, being single, divorced or widowed, not having children and the absence of close family members) and the healthcare professionals' perceptions of insufficient informal support or a high homecare requirement. CONCLUSION: Our results suggest that efforts to increase fair inclusion and the participation of older adults in CTs should target the physician-patient relationship, the medical profession and hospital funding, rather than the patient alone.


Assuntos
Neoplasias , Humanos , Idoso , Neoplasias/diagnóstico , Neoplasias/epidemiologia , Neoplasias/terapia , Relações Médico-Paciente , França/epidemiologia
7.
BMC Public Health ; 24(1): 1751, 2024 Jul 01.
Artigo em Inglês | MEDLINE | ID: mdl-38951819

RESUMO

BACKGROUND: At the time of the emergence of COVID-19, denialist and anti-vaccine groups have also emerged and are shaking public confidence in vaccination. METHODS: A qualitative study was conducted using online focus groups. Participants had not received any doses of vaccination against the disease. A total of five focus group sessions were conducted with 28 participants. They were recruited by snowball sampling and by convenience sampling. RESULTS: The two major topics mentioned by the participants were adverse effects and information. The adverse effects described were severe and included sudden death. In the case of information, participants reported: (1) consultation of websites on which scientists posted anti-vaccination content; and (2) distrust. CONCLUSIONS: At a time when anti-vaccine groups pose a major challenge to public health in general, and to COVID-19 vaccination campaigns in particular, this study is a first step towards gaining deeper insight into the factors that lead to COVID-19 vaccine refusal.


Assuntos
Vacinas contra COVID-19 , COVID-19 , Grupos Focais , Pesquisa Qualitativa , Hesitação Vacinal , Recusa de Vacinação , Humanos , Espanha , COVID-19/prevenção & controle , COVID-19/psicologia , Feminino , Masculino , Adulto , Vacinas contra COVID-19/administração & dosagem , Hesitação Vacinal/psicologia , Hesitação Vacinal/estatística & dados numéricos , Recusa de Vacinação/psicologia , Pessoa de Meia-Idade , Movimento contra Vacinação/psicologia , Idoso , Adulto Jovem , SARS-CoV-2
8.
Appetite ; 194: 107172, 2024 03 01.
Artigo em Inglês | MEDLINE | ID: mdl-38135183

RESUMO

Avoidant/restrictive food intake disorder (ARFID) is diagnosed when food avoidance leads to clinically significant nutritional, weight/growth, or psychosocial impairment. As many as 81.5% of children and adolescents diagnosed with ARFID have a history of a medical condition associated with pain, fatigue, or malaise. ARFID is diagnosed and treatment begins after the medical condition is resolved but food avoidance remains. Effective treatment involves repeated exposure to eating food and related stimuli aimed at creating inhibitory learning to counteract learned fears and aversions. Treatment usually involves positive reinforcement of food approach behavior and escape extinction/response prevention to eliminate food avoidant behavior. To shed light on the neural mechanisms that may maintain ARFID and to identify candidate pharmacological treatments for adjuncts to behavioral interventions, this paper systematically reviews research on drug treatments that successfully reduce conditioned taste aversions (CTA) in animal models by disrupting reconsolidation or promoting extinction. The mechanism of action of these treatments, brain areas involved, and whether these CTA findings have been used to understand human eating behavior are assessed. Collectively, the results provide insight into possible neural mechanisms associated with resuming oral intake following CTA akin to the therapeutic goals of ARFID treatment and suggest that CTA animal models hold promise to facilitate the development of interventions to prevent feeding problems. The findings also reveal the need to investigate CTA reduction in juvenile and female animals and show that CTA is rarely studied to understand disordered human feeding even though CTA has been observed in humans and parallels many of the characteristics of rodent CTA.


Assuntos
Transtorno Alimentar Restritivo Evitativo , Transtornos da Alimentação e da Ingestão de Alimentos , Criança , Adolescente , Humanos , Feminino , Paladar , Comportamento Alimentar/psicologia , Terapia Comportamental , Estudos Retrospectivos , Ingestão de Alimentos
9.
Neurosurg Rev ; 47(1): 259, 2024 Jun 07.
Artigo em Inglês | MEDLINE | ID: mdl-38844722

RESUMO

raumatic brain injury (TBI) is a significant global health concern, particularly affecting young individuals, and is a leading cause of mortality and morbidity worldwide. Despite improvements in treatment infrastructure, many TBI patients choose discharge against medical advice (DAMA), often declining necessary surgical interventions. We aimed to investigate the factors that can be associated with DAMA in TBI patients that were recommended to have surgical treatment. This study was conducted at single tertiary university center (2008-2018), by retrospectively reviewing 1510 TBI patients whom visited the emergency room. We analyzed 219 TBI surgical candidates, including 50 declining surgery (refused group) and the others whom agreed and underwent decompressive surgery. Retrospective analysis covered demographic characteristics, medical history, insurance types, laboratory results, CT scan findings, and GCS scores. Statistical analyses identified factors influencing DAMA. Among surgical candidates, 169 underwent surgery, while 50 declined. Age (60.8 ± 17.5 vs. 70.5 ± 13.8 years; p < 0.001), use of anticoagulating medication (p = 0.015), and initial GCS scores (9.0 ± 4.3 vs. 5.3 ± 3.2; p < 0.001) appeared to be associated with refusal of decompressive surgery. Based on our analysis, factors influencing DAMA for decompressive surgery included age, anticoagulant use, and initial GCS scores. Contrary to general expectations and some previous studies, our analysis revealed that the patients' medical conditions had a larger impact than socioeconomic status under the Korean insurance system, which fully covers treatment for TBI. This finding provides new insights into the factors affecting DAMA and could be valuable for future administrative plans involving national insurance.


Assuntos
Lesões Encefálicas Traumáticas , Alta do Paciente , Humanos , Lesões Encefálicas Traumáticas/cirurgia , Masculino , Feminino , Pessoa de Meia-Idade , Idoso , Adulto , Estudos Retrospectivos , Idoso de 80 Anos ou mais , Craniectomia Descompressiva , Recusa do Paciente ao Tratamento , Descompressão Cirúrgica , Escala de Coma de Glasgow
10.
Bioethics ; 38(5): 445-451, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38518194

RESUMO

Some authors argue that it is permissible for clinicians to conscientiously provide abortion services because clinicians are already allowed to conscientiously refuse to provide certain services. Call this the symmetry thesis. We argue that on either of the two main understandings of the aim of the medical profession-what we will call "pathocentric" and "interest-centric" views-conscientious refusal and conscientious provision are mutually exclusive. On pathocentric views, refusing to provide a service that takes away from a patient's health is professionally justified because there are compelling reasons, based on professional standards, to refuse to provide that service (e.g., it does not heal, and it is contrary to the goals of medicine). However, providing that same service is not professionally justified when providing that service would be contrary to the goals of medicine. Likewise, the thesis turns out false on interest-centric views. Refusing to provide a service is not professionally justified when that service helps the patient fulfill her autonomous preferences because there are compelling reasons, based on professional standards, to provide that service (e.g., it helps her achieve her autonomous preferences, and it would be contrary to the goals of medicine to deny her that service). However, refusing to provide that same service is not professionally justified when refusing to provide that service would be contrary to the goals of medicine. As a result, on either of the two most plausible views on the goals of medicine, the symmetry thesis turns out false.


Assuntos
Consciência , Humanos , Gravidez , Recusa Consciente em Tratar-se/ética , Feminino , Aborto Induzido/ética , Autonomia Pessoal , Ética Médica , Médicos/ética , Recusa em Tratar/ética
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