RESUMO
OBJECTIVE: We aimed to explore the supportive care needs of ovarian cancer patients and their caregivers before and after the first cancer recurrence, the top unmet needs after recurrence, and the relationship between patient and caregiver needs at recurrence. METHODS: Participants were 288 patients and 140 caregivers from the Australian Ovarian Cancer Study-Quality of Life (AOCS-QoL) cohort. They completed Supportive Care Needs Surveys (patients: SCNS-SF34, caregivers: SCNS-P&C44) every three-to-six months for up to two years. Linear mixed models tracked changes in needs over time. We calculated the percentage reporting moderate-to-high needs after recurrence. LASSO regression analysed patient-caregiver need relationships. RESULTS: Both patients' and caregivers' psychological, health system/service and information needs increased with recurrence along with patients' support and physical needs. These remained stable at nine months after recurrence. Dominant patient needs post-recurrence included 'fear of recurrence' (38%) and 'concerns about the worries of those close' (34%), while caregivers expressed 'concerns about recurrence' (41%) and 'recovery of the patient not turning out as expected' (31%). Among dyads, when patients had 'fears about the cancer spreading' this was associated with caregivers having a need for help with 'reducing stress in the patients' life'; when caregivers had concerns about 'recurrence' this was associated with patients needing help with 'uncertainty about the future' and 'information about things they can do to help themselves'. CONCLUSIONS: Recurrent ovarian cancer intensifies disease-related fears and concerns for patients and loved ones. Addressing dyadic concerns through supportive care interventions may enhance cohesion during the challenging journey of recurrent disease.
Assuntos
Cuidadores , Recidiva Local de Neoplasia , Neoplasias Ovarianas , Apoio Social , Humanos , Feminino , Cuidadores/psicologia , Neoplasias Ovarianas/psicologia , Neoplasias Ovarianas/terapia , Pessoa de Meia-Idade , Recidiva Local de Neoplasia/psicologia , Idoso , Qualidade de Vida , Adulto , Austrália , Avaliação das Necessidades , Necessidades e Demandas de Serviços de SaúdeRESUMO
OBJECTIVE: Although rural residence has been related to health disparities in cancer patients, little is known about how rural residence impacts mental health and quality of life (QOL) in ovarian cancer patients over time. This prospective longitudinal study investigated mental health and QOL of ovarian cancer patients in the first-year post-diagnosis. METHOD: Women with suspected ovarian cancer completed psychosocial surveys pre-surgery, at 6 months and one-year; clinical data were obtained from medical records. Histologically confirmed high grade epithelial ovarian cancer patients were eligible. Rural/urban residence was categorized from patient counties using the USDA Rural-Urban Continuum Codes. Linear mixed effects models examined differences in psychosocial measures over time, adjusting for covariates. RESULTS: Although disparities were not observed at study entry for any psychosocial variable (all p-values >0.22), urban patients showed greater improvement in total distress over the year following diagnosis than rural patients (p = 0.025) and were significantly less distressed at one year (p = 0.03). Urban patients had a more consistent QOL improvement than their rural counterparts (p = 0.006). There were no differences in the course of depressive symptoms over the year (p = 0.17). Social support of urban patients at 12 months was significantly higher than that of rural patients (p = 0.04). CONCLUSION: Rural patients reported less improvement in psychological functioning in the year following diagnosis than their urban counterparts. Clinicians should be aware of rurality as a potential risk factor for ongoing distress. Future studies should examine causes of these health disparities and potential long-term inequities and develop interventions to address these issues.
Assuntos
Carcinoma Epitelial do Ovário , Depressão , Neoplasias Ovarianas , Funcionamento Psicossocial , Disparidades nos Níveis de Saúde , Carcinoma Epitelial do Ovário/psicologia , Humanos , Feminino , Adulto , Pessoa de Meia-Idade , Idoso , Neoplasias Ovarianas/psicologia , População Urbana , População Rural , Apoio Social , Qualidade de Vida , Estudos Longitudinais , Saúde Mental , Estudos Prospectivos , Angústia Psicológica , Depressão/psicologia , Características de ResidênciaRESUMO
BACKGROUND: Risk management intentions prior to genetic counseling predict risk management uptake following genetic testing. Limited studies examined the attitude and understanding towards genetic counseling/testing in underserved countries. The purposes of this study were to explore knowledge and attitude towards genetic counseling, testing, and risk management for breast and ovarian cancer, and to understand the factors influencing risk management intentions in women with cancer in Taiwan. METHODS: Cross-sectional with correlational design was used in this study. Participants were enrolled for genetic testing based on clinical criteria suspected of having hereditary cancer. Survey was conducted using a standardized questionnaire including (1) demographics and personal/family history of cancer; (2) prior experience or consideration of genetic testing and reasons for not considering; (3) perception and attitude towards genetic counseling; and (4) intentions for risk management with a hypothetical BRCA1 mutation status. Multinomial logistic regression was used to analyze the predictors of participants' intentions for cancer risk management strategies. RESULTS: A total of 430 women with cancer were analyzed in which 51.6% had family history of cancer in first-degree relatives. Only 30.7% had considered genetic testing and 28.4% had known about genetic counseling prior to the study. When prompted with the services of genetic counseling, the attitude towards genetic counseling was fairly positive (score of 19.8 ± 2.9 out of 25). Given hypothetical BRCA1 mutation status, enhanced breast cancer screening with annual breast MRI was much more accepted than cancer risk reducing interventions. More positive attitude towards genetic counseling (each score point increase) was associated with higher odds of intention for breast MRI (OR 1.20, 95% CI 1.09-1.32) and preventive tamoxifen (OR 1.11, 95% CI 1.02-1.22). Having considered genetic testing prior to the study was associated with higher odds of intention for all four risk management strategies: breast MRI (OR 2.99, 95% CI 1.46-6.11), preventive tamoxifen (OR 1.79, 95% CI 1.00-3.17), risk-reducing mastectomy (OR 2.24, 95% CI 1.13-4.42), and risk-reducing salpingo-oophorectomy (OR 2.69, 95% CI 1.27-6.93). CONCLUSION: Knowledge of genetic testing and positive attitude towards genetic counseling were associated with increased willingness to consider cancer risk management strategies for hereditary breast and ovarian cancer syndrome. Given the limited knowledge on genetic testing and counseling in the studied population, increasing public awareness of these services may increase adoption of the risk management strategies.
Assuntos
Neoplasias da Mama , Neoplasias Ovarianas , Neoplasias da Mama/psicologia , Estudos Transversais , Feminino , Genes BRCA1 , Genes BRCA2 , Predisposição Genética para Doença , Testes Genéticos , Humanos , Modelos Logísticos , Mastectomia , Mutação , Neoplasias Ovarianas/psicologia , Gestão de Riscos , TaiwanRESUMO
OBJECTIVE: To describe perceptions of patient-centered communication (PCC); assess whether physician specialty, patient characteristics, or health system characteristics are associated with PCC; and identify associations between PCC, health-related quality of life (HRQoL), and symptom burden among individuals with ovarian cancer. METHODS: Cross-sectional, descriptive survey of English-speaking adults with ovarian cancer. PCC, HRQoL, and ovarian cancer symptom burden were assessed with the PCC-Ca-36, the FACT-G, and the FOSI-18, respectively. PCC-Ca-36 scores were summarized using descriptive statistics. Predictors of PCC-Ca-36, FACT-G, and FOSI-18 scores were identified using multiple linear regression. RESULTS: Participants (n = 176) had a mean age of 59.4 years (SD = 12.1). The majority (65.9%) had advanced-stage disease, while 42.0% were receiving treatment. The mean PCC-Ca-36 total score was 4.09 (SD = 0.78) out of a possible 5, indicating participants often perceived that clinicians engaged in PCC. Among the PCC functions, participants reported that clinicians least often enabled patient self-management (M = 3.65, SD = 0.99), responded to emotions (M = 3.84, SD = 1.04), and managed uncertainty (M = 3.91, SD = 0.93). In multivariable analyses, neither physician specialty nor patient and health system characteristics were significantly associated with overall PCC. Greater overall PCC predicted better overall HRQoL; better social/family, emotional, and functional well-being; and lower overall and physical symptom burden (all p ≤ 0.05). CONCLUSION: Greater PCC is significantly associated with better HRQoL and lower symptom burden among individuals with ovarian cancer. PRACTICE IMPLICATIONS: Promotion of PCC is a promising strategy to improve patient-reported outcomes in the ovarian cancer care setting.
Assuntos
Efeitos Psicossociais da Doença , Neoplasias Ovarianas/psicologia , Medidas de Resultados Relatados pelo Paciente , Relações Médico-Paciente , Qualidade de Vida , Idoso , Comunicação , Estudos Transversais , Feminino , Humanos , Pessoa de Meia-Idade , Neoplasias Ovarianas/diagnóstico , Neoplasias Ovarianas/terapia , Assistência Centrada no Paciente , Pesquisa Qualitativa , Autorrelato , IncertezaRESUMO
BACKGROUND: Targeted genetic testing is a tool to identify women at increased risk of gynaecological cancer. OBJECTIVE: This systematic review evaluates the results and quality of cost-effectiveness modeling studies that assessed targeted genetic-based screen-and-treat strategies to prevent breast and ovarian cancer. METHODS: Using MEDLINE and databases of the Centre for Reviews and Dissemination, we searched for health economic modeling evaluations of targeted genetic-based screen-and-treat strategies to prevent inheritable breast and ovarian cancer (until August 2020). The incremental cost-effectiveness ratios (ICERs) were compared. Methodological variations were addressed by evaluating the model conceptualizations, the modeling techniques, parameter estimation and uncertainty, and transparency and validation of the models. Additionally, the reporting quality of each study was assessed. RESULTS: Eighteen studies met our inclusion criteria. From a payer perspective, the ICERs of (1) BRCA screening for high-risk women without cancer ranged from dominating the no test strategy to an ICER of $21 700/quality-adjusted life years (QALY). In studies that evaluated (2) BRCA cascade screening (ie, screening of women with cancer plus their unaffected relatives) compared with no test, the ICERs were between $6500/QALY and $50 200/QALY. Compared with BRCA alone, (3) multigene testing in women without cancer had an ICER of $51 800/QALY (one study), while for (4) multigene-cascade screening the ICERs were $15 600/QALY, $56.500/QALY, and $69 600/QALY for women in the United Kingdom, Norway, and the United States, respectively (2 studies). More recently published studies showed a higher methodological and reporting quality. CONCLUSIONS: Targeted BRCA or multiple gene screening is likely to be cost-effective. Methodological variations could be decreased by the development of a reference model, which may serve as a tool for validation of present and future cost-effectiveness models.
Assuntos
Neoplasias da Mama/genética , Neoplasias da Mama/psicologia , Testes Genéticos/economia , Neoplasias Ovarianas/genética , Neoplasias Ovarianas/psicologia , Proteína BRCA1/genética , Proteína BRCA2/genética , Análise Custo-Benefício , Feminino , HumanosRESUMO
OBJECTIVE: Physical activity improves physical function, quality of life, and mental health, yet fewer than 80% of ovarian cancer survivors meet activity guidelines. This pilot intervention study aimed to increase physical activity in ovarian cancer survivors by leveraging principles of behavioral economics, gamification, and social support. METHODS: This 24-week study (12-week intervention; 12-week follow-up) enrolled women with ovarian cancer after completion of first-line treatment with a self-selected "teammate." Participants used Fitbits to measure daily steps, select an increased step goal, and enroll in a collaborative game, including points and levels for achieving step goals. Primary outcomes were feasibility (defined a priori as ≥60% approach-to-consent ratio and ≥ 70% adherence to Fitbit), acceptability (≤20% of participants reporting burden or regret for participation) and preliminary efficacy (≥70% reporting increased motivation); exploratory outcomes included change in steps. RESULTS: We recruited 24 participants (mean age = 63 years, range = 37-79 years) with a 94% approach-to-consent ratio. All participants completed the intervention with 94% tracker adherence. At 24-week follow-up, 1/24 (≤5%) of participants reported burden; 0/24 (0%) reported regret for study participation; and 22/24 (>90%) agreed/strongly agreed that "the study motivated me to increase activity levels." Participants' mean daily steps were 6210.7 (±3328.1) at baseline and increased to 7643 (± 3610.9) steps (p < 0.001) during the 12-week intervention. CONCLUSIONS: This pilot study demonstrated feasibility, acceptability, and preliminary efficacy, justifying a larger randomized clinical trial to test efficacy at increasing activity levels. Future studies should examine strategies for maintaining increased activity levels in survivors over time.
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Sobreviventes de Câncer/psicologia , Exercício Físico/psicologia , Monitores de Aptidão Física , Neoplasias Ovarianas/reabilitação , Telemedicina , Adulto , Idoso , Economia Comportamental , Estudos de Viabilidade , Feminino , Humanos , Pessoa de Meia-Idade , Motivação , Neoplasias Ovarianas/psicologia , Projetos Piloto , Ensaios Clínicos Controlados Aleatórios como Assunto , SobrevivênciaRESUMO
BACKGROUND: Health-related quality of life (HRQL) is an important outcome measure in Oncology. AIM OF THE STUDY: To validate the Mexican-Spanish version of the QLQ-OV28 questionnaire to assess HRQL in women with ovarian cancer (OC). METHODS: The QLQ-C30 and QLQ-OV28 instruments were applied to women with OC attending a cancer center in Mexico. The usual psychometric analyses were performed; the Spearman's method was used for correlation analysis, reliability analysis with the Cronbach's alpha, known-group comparisons with the Kruskal-Wallis test, responsiveness was tested employing repeated measures ANOVA, and the association of scale scores and overall survival (OS) were analyzed with the Kaplan-Meier method and Cox's model. RESULTS: Two hundred fifty-two women with OC were included in this cohort. The instruments were well accepted and compliance rates were high; patients responded both instruments in <30 min. The QLQ-OV28 internal consistency tests demonstrated good convergent (Correlation coefficients [CC] 0.154â0.694) and divergent validity (CC 0.003â0.69). Cronbach's α coefficients of six of eight scales of the QLQ-OV28 instruments were >0.7 (range, 0.567â0.857). Scales QLQ-OV28 instruments distinguished among clinically distinct groups of patients, particularly after basal serum albumin and basal Caâ125 levels. The evaluation of responsiveness demonstrated that two scales of the QLQ-OV28 were sensitive to change over time during induction chemotherapy. Six scales of the QLQ-OV28 were associated with OS. CONCLUSIONS: The Mexican-Spanish version of the QLQ-OV28 questionnaire is reliable and valid for the assessment of HRQL in patients with OC and can be broadly used in clinical trials.
Assuntos
Neoplasias Ovarianas/psicologia , Qualidade de Vida/psicologia , Feminino , Humanos , Idioma , México , Pessoa de Meia-Idade , Neoplasias Ovarianas/epidemiologia , Neoplasias Ovarianas/mortalidade , Prognóstico , Reprodutibilidade dos Testes , Inquéritos e Questionários , Análise de SobrevidaRESUMO
BACKGROUND: Malignant bowel obstruction is a common complication of ovarian cancer, resulting in limited oral intake. Home parenteral nutrition (HPN) may be offered to patients in this condition to meet nutritional requirements. However, it is not known how they experience being unable to eat. The present study reports how patients related to food when receiving HPN. METHODS: The investigation was a qualitative study underpinned by phenomenology with women with advanced ovarian cancer in bowel obstruction receiving parenteral nutrition. Interview transcripts were analysed thematically guided by the techniques of Van Manen. RESULTS: We recruited 20 women to the study. Participants were interviewed a maximum of four times and a total of 39 in-depth longitudinal interviews were conducted. Participants could tolerate minimal amounts of food, if they had a venting gastrostomy. Not being able to eat engendered a sense of sadness and loss, and most women found it challenging to be in the presence of others eating. They adopted strategies to cope, which included fantasising about food and watching cookery programmes. These approaches were not a long-term solution; either participants came to terms with their loss or the strategies became less effective in providing relief. CONCLUSIONS: Home parenteral nutrition meets the nutritional requirements of patients with malignant bowel obstruction but cannot replace the non-nutritive functions of food. Healthcare professionals can offer a patient-centred approach by acknowledging the difficulties that patients may face and, wherever possible, encourage them to focus on the positive benefits of interacting with people rather than the loss of eating on social occasions.
Assuntos
Comportamento Alimentar/psicologia , Obstrução Intestinal/psicologia , Neoplasias Ovarianas/psicologia , Nutrição Parenteral no Domicílio/psicologia , Qualidade de Vida/psicologia , Adaptação Psicológica , Idoso , Efeitos Psicossociais da Doença , Feminino , Humanos , Obstrução Intestinal/etiologia , Obstrução Intestinal/terapia , Estudos Longitudinais , Pessoa de Meia-Idade , Neoplasias Ovarianas/complicações , Pesquisa Qualitativa , Comportamento SocialRESUMO
OBJECTIVE: To measure preferences of women with ovarian cancer regarding risks, side effects, costs and benefits afforded by maintenance therapy (MT) with a poly ADP ribose polymerase (PARP) inhibitor. METHODS: A discrete-choice experiment elicited preferences of women with ovarian cancer regarding 6 attributes (levels in parentheses) relevant to decisions for MT versus treatment break: (1) overall survival (OS; 36, 38, 42 months); (2) progression-free survival (PFS; 15, 17, 21 months); (3) nausea (none, mild, moderate); (4) fatigue (none, mild, moderate); (5) probability of death from myelodysplastic syndrome/acute myelogenous leukemia (MDS/AML; 0% to 10%); (6) monthly out-of-pocket cost ($0 to $1000). Participants chose between 2 variable MT scenarios and a static scenario representing treatment break, with multiple iterations. Random-parameters logit regression was applied to model choices as a function of attribute levels. RESULTS: 95 eligible participants completed the survey; mean age was 62, 48% had recurrence, and 17% were ever-PARP inhibitor users. Participants valued OS (average importance weight 24.5 out of 100) and monthly costs (24.6) most highly, followed by risk of death from MDS/AML (17.9), nausea (14.7), PFS (10.5) and fatigue (7.8). Participants would accept 5% risk of MDS/AML if treatment provided 2.2 months additional OS or 4.8 months PFS. Participants would require gains of 2.6 months PFS to accept mild treatment-related fatigue and 4.4 months to accept mild nausea. CONCLUSIONS: When considering MT, women with ovarian cancer are most motivated by gains in OS. Women expect at least 3-4 months of PFS benefit to bear mild side effects of treatment.
Assuntos
Neoplasias Ovarianas/tratamento farmacológico , Preferência do Paciente/psicologia , Inibidores de Poli(ADP-Ribose) Polimerases/administração & dosagem , Tomada de Decisões , Feminino , Humanos , Quimioterapia de Manutenção , Pessoa de Meia-Idade , Recidiva Local de Neoplasia/tratamento farmacológico , Recidiva Local de Neoplasia/economia , Recidiva Local de Neoplasia/psicologia , Neoplasias Ovarianas/economia , Neoplasias Ovarianas/psicologia , Inibidores de Poli(ADP-Ribose) Polimerases/efeitos adversos , Inibidores de Poli(ADP-Ribose) Polimerases/economia , Intervalo Livre de Progressão , Taxa de Sobrevida , Estados UnidosRESUMO
PURPOSE: To describe the cancer care process as it is perceived by women with ovarian cancer. PARTICIPANTS & SETTING: 18 English-speaking adult women with ovarian cancer were recruited from an advocacy organization for patients with ovarian cancer and the gynecologic oncology clinic at a community-based teaching hospital in Burlington, Massachusetts. METHODOLOGIC APPROACH: A grounded theory approach was used. Data were collected via individual interviews with participants. FINDINGS: An overarching theme of preserving oneself in the face of uncertainty was described by the participants. Trajectories from prediagnosis to treatment were influenced by the quality of patient-provider communication, support from significant others, and self-concept aspects. IMPLICATIONS FOR NURSING: Comprehensive care that validates patient concerns and supports information exchange is essential. Nurses can promote the physical and psychological well-being of women with ovarian cancer by identifying institutional and community-based resources for support and specialty care.
Assuntos
Atitude Frente a Saúde , Neoplasias Ovarianas/psicologia , Incerteza , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Teoria Fundamentada , Recursos em Saúde , Acessibilidade aos Serviços de Saúde , Humanos , Pessoa de Meia-Idade , Papel do Profissional de Enfermagem , Neoplasias Ovarianas/enfermagem , Satisfação do Paciente , Relações Profissional-Paciente , Prognóstico , Pesquisa Qualitativa , Autocuidado , Autoimagem , Apoio Social , Fatores SocioeconômicosRESUMO
BACKGROUND: Personalized breast cancer risk assessment is important in identifying and managing women at increased risk for breast cancer. However, there has been little evaluation of the practical aspects of implementing a population-based program that identifies and refers high-risk patients for further evaluation. PATIENTS AND METHODS: We implemented a semiautomated approach to collect personal and family history to identify women at high risk of breast cancer. On the basis of the survey, women identified as elevated risk received letters inviting them to telephone consultations with licensed breast health genetic counselors (BHGCs). High-risk women's history was verified and counseling and referrals provided, as appropriate. RESULTS: Among 20,558 women screened, 2000 (9.7%) women were identified as high risk on the basis of patient initial report. However, most (1,580) were excluded from receiving risk communication after BHGC review of risk information with the woman or because of previous attention to breast cancer risk or an abnormal mammogram. Among 420 subjects who received risk letters, 225 received a BHGC consultation. Of these 225 women, 63 were reclassified as average risk, 158 were referred to high-risk clinics, and 5 consultations were incomplete after determining that further information was needed. Of the 158 women referred to high-risk breast clinics, 51 attended an appointment. CONCLUSION: This study highlights the complex nature of a population-based breast cancer screening program in a clinical setting and shows the substantial effort needed to identify newly discovered women at high risk for breast cancer and refer them to appropriate services.
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Neoplasias da Mama/diagnóstico , Aconselhamento Genético/métodos , Predisposição Genética para Doença , Implementação de Plano de Saúde , Encaminhamento e Consulta , Medição de Risco/métodos , Adulto , Idoso , Neoplasias da Mama/genética , Neoplasias da Mama/psicologia , Detecção Precoce de Câncer/métodos , Feminino , Seguimentos , Humanos , Mamografia , Pessoa de Meia-Idade , Neoplasias Ovarianas/diagnóstico , Neoplasias Ovarianas/genética , Neoplasias Ovarianas/psicologia , Prognóstico , Inquéritos e QuestionáriosRESUMO
In families with hereditary breast/ovarian cancer, complex disease histories challenge established patterns of family communication and influence decision-making for clinical surveillance, genetic testing, and risk management. An interdisciplinary team examined longitudinal interview data from women with identified BRCA1/2 mutations to assess interactions within family and social networks about risk information communication and management. We used interpretive description to identify motivation, content, and derived benefit of these interactions. Participants discussed risk information and management strategies with biological and nonbiological network members for multiple purposes: discharging responsibility for risk information dissemination, protecting important relationships, and navigating decision trajectories. Evolving interactions with loved ones balanced long-standing family communication patterns with differing personal preferences for privacy or open sharing, whereas interactions with nonbiological network members expanded participants' range of choices for sources of risk management information. Ongoing assessment of social networks may help support engagement with risk management by aligning with patient social needs.
Assuntos
Proteína BRCA1 , Proteína BRCA2/genética , Neoplasias da Mama/genética , Neoplasias da Mama/psicologia , Tomada de Decisões , Família/psicologia , Predisposição Genética para Doença , Neoplasias Ovarianas/genética , Neoplasias Ovarianas/psicologia , Gestão de Riscos , Rede Social , Adulto , Feminino , Testes Genéticos , Humanos , Entrevistas como Assunto , Pessoa de Meia-Idade , Mutação , LinhagemRESUMO
Ovarian cancer is challenging, both physically and psychologically, because of the advanced nature of the disease at diagnosis, adverse effects of the disease and treatment, and impact on roles and responsibilities. The family plays an integral role in promoting and maintaining the health of family caregivers, as well as providing physical and emotional support. The purpose of this study was to explore the experience of family caregivers caring for their loved ones with advanced ovarian cancer. Thirteen family caregivers were interviewed. The analysis of the data revealed 4 significant challenges that characterized the caregiving experience over time: confronting the initial diagnosis, dealing with fluctuations in physical status, confronting a turning point, and facing decline and death. Woven throughout these challenges, family caregivers routinely described difficulties in accessing information and navigating the health care system, which caused them added concern and frustration.
Assuntos
Efeitos Psicossociais da Doença , Família/psicologia , Neoplasias Ovarianas/complicações , Neoplasias Ovarianas/terapia , Adaptação Psicológica , Adulto , Feminino , Humanos , Acontecimentos que Mudam a Vida , Masculino , Pessoa de Meia-Idade , Neoplasias Ovarianas/psicologia , Apoio Social , Inquéritos e QuestionáriosRESUMO
OBJECTIVE: Population-based risk assessment, using genetic testing and the provision of appropriate risk management, could lead to prevention, early detection and improved clinical management of ovarian cancer (OC). Previous research with mostly white British participants found positive attitudes towards such a programme. The current study aimed to explore the attitudes of South Asian (SA) women and men in the UK with the aim of identifying how best to implement such a programme to minimise distress and maximise uptake. DESIGN: Semistructured qualitative focus group discussions. SETTING: Community centres across North London and Luton. PARTICIPANTS: 49 women and 13 men who identified as SA (Indian, Pakistani or Bangladeshi), which constitutes the largest non-European ethnic minority group in the UK. METHODS: Seven community-based focus groups were held. Group discussions were transcribed verbatim, coded and analysed thematically. RESULTS: Awareness and knowledge of OC symptoms and specific risk factors was low. The programme was acceptable to most participants and attitudes to it were generally positive. Participants' main concerns related to receiving a high-risk result following the genetic test. Younger women may be more cautious of genetic testing, screening or risk-reducing surgery due to the importance of marriage and childbearing in their SA cultures. CONCLUSIONS: A crucial first step to enable implementation of population-based genetic risk assessment and management in OC is to raise awareness of OC within SA communities. It will be important to engage with the SA community early on in programme implementation to address their specific concerns and to ensure culturally tailored decision support.
Assuntos
Conhecimentos, Atitudes e Prática em Saúde/etnologia , Promoção da Saúde/métodos , Neoplasias Ovarianas/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Bangladesh/etnologia , Detecção Precoce de Câncer , Feminino , Grupos Focais , Testes Genéticos , Humanos , Índia/etnologia , Masculino , Pessoa de Meia-Idade , Neoplasias Ovarianas/diagnóstico , Neoplasias Ovarianas/genética , Paquistão/etnologia , Pesquisa Qualitativa , Medição de Risco/métodos , Reino Unido , Adulto JovemRESUMO
Backround: The primary aim of this study was to investigate information needs and treatment preferences of patients with ovarian cancer, focusing especially on physician-patient relationship and treatment. Patients and methods: A questionnaire was developed based on the experiences of the national German survey 'Expression II', and was provided to patients with ovarian cancer either at initial diagnosis or with recurrent disease via Internet (online-version) or as print-out-version. Results: From December 2009 to October 2012, a total of 1830 patients with ovarian cancer from eight European countries (Austria, Belgium, France, Germany, Italy, Poland, Romania, Spain) participated, 902 (49.3%) after initial diagnosis and 731 (39.9%) with recurrent ovarian cancer. The median age was 58 years (range 17-89). Nearly all patients (96.2%) had experienced upfront surgery followed by first-line chemotherapy (91.8%). The majority of patients were satisfied with the completeness and comprehensibility of the explanation about the diagnosis and treatment options. The three most important aspects, identified by patients to improve the treatment for ovarian cancer included: 'the therapy should not induce alopecia' (42%), 'there must be more done to counter fatigue' (34.5%) and 'the therapy should be more effective' (29.7%). Out of 659 (36%) patients, who were offered participation in a clinical trial, 476 (26%) were included. Conclusion: This study underlines the high need of patients with ovarian cancer for all details concerning treatment options irrespective of their cultural background, the stage of disease and the patient's age. Increased information requirements regarding potential side effects and treatment alternatives were recorded. Besides the need for more effective therapy, alopecia and fatigue are the most important side effects of concern to patients.
Assuntos
Neoplasias Ovarianas/psicologia , Neoplasias Ovarianas/terapia , Pacientes/psicologia , Relações Médico-Paciente , Adulto , Idoso , Europa (Continente) , Feminino , Necessidades e Demandas de Serviços de Saúde , Humanos , Pessoa de Meia-Idade , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Very few studies have examined the association between financial status and the quality of life (QOL) of patients with specific cancers. Ovarian cancer survivors frequently suffer repeat recurrence and subsequent treatment and, as a result, a significant added financial burden. Financial burdens disproportionally affect patients of low income. This study examines the association between financial status, based upon family income and expenses, and QOL in Chinese women with recurrent ovarian cancer. METHODS: We assessed baseline and follow-up (3-month) QOL of Chinese women with recurrent ovarian cancer using the European Organization for Research and Treatment of Cancer 30-Item Core Quality of Life Questionnaire (EORTC QLQ-C30), and the Quality of Life Ovarian Cancer 28 Questionnaire (QLQ-OV28). Financial status was stratified based upon self-reported disposable income. Linear or logistic regression models were applied to determine the relationship between QOL in each financial status category, and key demographic and clinical factors. RESULTS: Among all 473 ovarian cancer patients, 123 of them met enrollment criteria were recruited to this study and completed baseline questionnaires; 95 of these patients completed the 3-month follow-up questionnaires. Our results showed that low financial status was significantly associated with worse QOL on all functioning domains and several symptom domains. QOL deteriorated during the follow-up. A significantly greater number of patients with low financial status experienced deteriorating QOL in several domains. Occupation and insurance type, two factors related to financial status, were significantly associated with QOL as well, but to a lesser extent. Education, recurrence interval, age and BMI were also significantly related to certain domains of QOL. CONCLUSIONS: Financial status is associated with QOL of Chinese women with recurrent ovarian cancer. These patients showed worsening QOL during active chemotherapy. Lower financial status is associated with a higher risk of deteriorating QOL in several domains.
Assuntos
Renda , Neoplasias Ovarianas/psicologia , Pobreza/psicologia , Qualidade de Vida/psicologia , Adulto , Idoso , China , Feminino , Humanos , Pessoa de Meia-Idade , Recidiva , Inquéritos e Questionários , SobreviventesRESUMO
We have investigated a relational model of expectations and preferences among ovarian cancer patients centred on physician-patient communication, treatment approach, and the need for information. Consecutive patients anonymously filled in the EXPRESSION III questionnaire between 2009 and 2012. Following descriptive statistics, structural equation modelling was used to analyse the relationships between physician's evaluation by the patient (PEP), result of therapy (RT), need for changes in treatment (NCT) and patient's desire to be informed (PD). From a total of 108 patients, 53 (49.1%) knew their disease stage, 103 (95.4%) underwent surgery, 91 (84.3%) had chemotherapy and 51 (46.3%) relapsed. The final model demonstrated a good fit of data with fit indices >0.90. There was a significant positive effect of PEP on RT and a significant negative effect of PEP on NCT, with the final model explaining 84% of the NCT variance. Physicians represent the main point of contact, not only as a source of information about the disease and various treatment options, but also in the coping processes. As patients benefit from completeness of medical consultations, their awareness of the treatment outcome increases, while a negative perception of the physician leads to a desire to make changes in therapy.
Assuntos
Adaptação Psicológica , Antineoplásicos/uso terapêutico , Comunicação , Conhecimentos, Atitudes e Prática em Saúde , Comportamento de Busca de Informação , Neoplasias Ovarianas/psicologia , Preferência do Paciente , Relações Médico-Paciente , Atitude Frente a Saúde , Tomada de Decisões , Feminino , Necessidades e Demandas de Serviços de Saúde , Humanos , Neoplasias Ovarianas/patologia , Neoplasias Ovarianas/terapia , Ovariectomia , Participação do Paciente , RomêniaRESUMO
OBJECTIVE: Health-related quality of life (HRQOL) has been found to be associated with overall survival in women with ovarian cancer. However, previous studies assessed HRQOL after surgery within clinical trial populations only. The study goal was to determine the association of pre-cancer diagnosis HRQOL with the likelihood of receiving surgery and with overall survival in a national, population-based cohort of older women with advanced ovarian cancer. METHODS: The Surveillance, Epidemiology, and End Results (SEER)-Medicare Health Outcomes Survey (MHOS) database was queried to identify 374 women aged 65years and older with advanced stage epithelial ovarian cancer from 1998 to 2011. Responses to the Short Form 36 (SF-36) and Veterans-RAND-12 (VR-12), two single-item global health questions, and Activities of Daily Living (ADLs) were abstracted. Multivariable models were used to quantify associations of HRQOL and ADL assessments with surgery and overall survival, adjusted for demographic and clinical characteristics. RESULTS: Of 374 women with a HRQOL assessment prior to diagnosis, 199 (53%) underwent surgery. Increases in physical and mental HRQOL domains were significantly associated with receipt of surgery. The relationship between HRQOL domains and overall survival were not statistically significant. For ADLs, only difficulty in toilet use was significantly associated with survival. CONCLUSION: In this population-based sample of older women with advanced epithelial ovarian cancer, pre-diagnosis HRQOL was predictive of receiving surgery, but not of overall survival.
Assuntos
Neoplasias Epiteliais e Glandulares/cirurgia , Neoplasias Ovarianas/cirurgia , Qualidade de Vida , Atividades Cotidianas , Idoso , Idoso de 80 Anos ou mais , Carcinoma Epitelial do Ovário , Feminino , Inquéritos Epidemiológicos , Humanos , Medicare , Neoplasias Epiteliais e Glandulares/mortalidade , Neoplasias Epiteliais e Glandulares/psicologia , Neoplasias Ovarianas/mortalidade , Neoplasias Ovarianas/psicologia , Programa de SEER , Estados UnidosRESUMO
BACKGROUND: The GOG-218 and ICON-7 studies recently showed that adding bevacizumab to first-line therapy for patients with advanced ovarian cancer increased progression-free survival. However, the high cost and long treatment duration prevents the incorporation of bevacizumab in practice. The aim of this study was to explore and quantify patients' preferences for adding bevacizumab to first-line therapy. METHODS: A discrete choice experiment (DCE) and trade-off question were designed and distributed to 102 ovarian cancer patients. Participants were asked to choose between two hypothetical first-line therapies that differed in terms of effectiveness, safety, and the financial burden. A trade-off technique varying the cost of bevacizumab was used to quantify a willingness-to-pay threshold for selecting bevacizumab. RESULTS: All attributes of the DCE had a statistically significant impact on respondents' preferences and the financial burden was the most important attribute. The results of the trade-off question showed that more than half of patients would prefer to add bevacizumab to standard chemotherapy when the cost of the drug was reduced to 17% (1/6) of the baseline cost. CONCLUSION: Patients' preferences for bevacizumab in the adjuvant treatment of ovarian cancer depend primarily on drug costs. Our results suggest that the current cost of bevacizumab is sufficiently high that the majority of ovarian cancer patients are not willing to pay to accept a small increase in progression-free survival.
Assuntos
Protocolos de Quimioterapia Combinada Antineoplásica/uso terapêutico , Quimioterapia Adjuvante/métodos , Comportamento de Escolha , Procedimentos Cirúrgicos de Citorredução , Neoplasias Císticas, Mucinosas e Serosas/tratamento farmacológico , Neoplasias Ovarianas/tratamento farmacológico , Preferência do Paciente , Adulto , Protocolos de Quimioterapia Combinada Antineoplásica/economia , Bevacizumab/administração & dosagem , Bevacizumab/economia , Quimioterapia Adjuvante/economia , Análise Custo-Benefício , Intervalo Livre de Doença , Custos de Medicamentos , Feminino , Humanos , Pessoa de Meia-Idade , Estadiamento de Neoplasias , Neoplasias Císticas, Mucinosas e Serosas/patologia , Neoplasias Císticas, Mucinosas e Serosas/psicologia , Neoplasias Ovarianas/patologia , Neoplasias Ovarianas/psicologiaRESUMO
BACKGROUND: During the last decades many successful efforts have been made in order to increase life expectancy in ovarian cancer (OC) patients. However, just a few studies have investigated the impact of OC on quality of life (QoL) and sexual function in OC cases during treatment. OBJECTIVE: The aim of this study was to evaluate the QoL and sexual function of OC patients during chemotherapy (CT). PATIENTS AND METHODS: Forty-nine subjects were enrolled and filled in the European Organisation for Research and Treatment of Cancer (EORTC) QLQ-OV28, Female Sexual Function Index (FSFI) and Female Sexual Distress Scale (FSDS) questionnaires. The results were evaluated globally and consequently stratified into several groups: single surgery versus multiple surgeries, age ≤48 years versus >48 years, and first-line CT versus multiple lines of CT. RESULTS: Menopause-related symptoms, body image and attitude toward the disease were significantly worse during first-line CT (p = 0.018, p = 0.029 and p = 0.006, respectively). Sexual outcomes resulted in better scores in younger patients in all questionnaires (FSFI: p = 0.001; FSDS: p = 0.048; specific EORTC QLQ-OV28 items: p = 0.022). Scores concerning body image, attitude toward the disease and CT-associated symptoms resulted worse in patients after the first surgery (p = 0.017, p = 0.002 and p = 0.012, respectively). CONCLUSION: Our study confirms that OC has a detrimental impact on QoL and intimacy, particularly in younger patients, during the first course of CT and after the first cytoreductive surgery.