Information needs of Asian and White British cancer patients and their families in Leicestershire: a cross-sectional survey.
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ABSTRACT:
SUBMITTER: Muthu Kumar D
PROVIDER: S-EPMC2409694 | biostudies-other | 2004 Apr
REPOSITORIES: biostudies-other
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Project description:ObjectivesThis cross-sectional survey investigated whether there were ethnic differences in depressive symptoms among British South Asian (BSA) patients with cancer compared with British White (BW) patients during 9 months following presentation at a UK Cancer Centre. We examined associations between depressed mood, coping strategies and the burden of symptoms.DesignQuestionnaires were administered to 94 BSA and 185 BW recently diagnosed patients with cancer at baseline and at 3 and 9 months. In total, 53.8% of the BSA samples were born in the Indian subcontinent, 33% in Africa and 12.9% in the UK. Three screening tools for depression were used to counter concerns about ethnic bias and validity in linguistic translation. The Hospital Anxiety and Depression Scale (HADS-D), Patient Health Questionnaire-9 (both validated in Gujarati), Emotion Thermometers (including the Distress Thermometer (DT), Mini-MAC and the newly developed Cancer Insight and Denial questionnaire (CIDQ) were completed.SettingLeicestershire Cancer Centre, UK.Participants94 BSA and 185 BW recently diagnosed patients with cancer.ResultsBSA self-reported significantly higher rates of depressive symptoms compared with BW patients longitudinally (HADS-D ?8: baseline: BSA 35.1% vs BW 16.8%, p=0.001; 3 months BSA 45.6% vs BW 20.8%, p=0.001; 9 months BSA 40.6% vs BW 15.3%, p=0.004). BSA patients used potentially maladaptive coping strategies more frequently than BW patients at baseline (hopelessness/helplessness p=0.005, fatalism p=0.0005, avoidance p=0.005; the CIDQ denial statement 'I do not really believe I have cancer' p=0.0005). BSA patients experienced more physical symptoms (DT checklist), which correlated with ethnic differences in depressive symptoms especially at 3 months.ConclusionsHealth professionals need to be aware of a greater probability of depressive symptomatology (including somatic symptoms) and how this may present clinically in the first 9 months after diagnosis if this ethnic disparity in mental well-being is to be addressed.
| S-EPMC3686160 | biostudies-literature
Project description:BackgroundMental illnesses may explain vulnerability to develop extremist beliefs that can lead to violent protest and terrorism. Yet there is little evidence.AimsTo investigate the relationship between mental illnesses and extremist beliefs.MethodPopulation survey of 618 White British and Pakistani people in England. Extremism was assessed by an established measure of sympathies for violent protest and terrorism (SVPT). Respondents with any positive scores (showing sympathies) were compared with those with all negative scores. We calculated associations between extremist sympathies and ICD-10 diagnoses of depression and dysthymia, and symptoms of anxiety, personality difficulties, autism and post-traumatic stress. Also considered were demographics, life events, social assets, political engagement and criminal convictions.ResultsSVPT were more common in those with major depression with dysthymia (risk ratio 4.07, 95% CI 1.37-12.05, P = 0.01), symptoms of anxiety (risk ratio 1.09, 95% CI 1.03-1.15, P = 0.002) or post-traumatic stress (risk ratio 1.03, 95% CI 1.01-1.05, P = 0.003). At greater risk of SVPT were: young adults (<21 versus ≥21: risk ratio 3.05, 95% CI 1.31-7.06, P = 0.01), White British people (versus Pakistani people: risk ratio 2.24, 95% CI 1.25-4.02, P = 0.007) and those with criminal convictions (risk ratio 2.23, 95% CI 1.01-4.95, P = 0.048). No associations were found with life events, social assets and political engagement.ConclusionDepression, dysthymia and symptoms of anxiety and post-traumatic stress are associated with extremist sympathies.
| S-EPMC7525107 | biostudies-literature
Project description:BackgroundParents play an influential role in the health behaviors of their children, such as physical activity, dietary intake, sleep, screen time, and substance use. However, further research is needed to inform the development of more effective and engaging parent-based interventions targeting adolescent risk behaviors.ObjectiveThis study aimed to assess parents' knowledge about adolescent risk behaviors, barriers and facilitators to engaging in healthy behaviors, and preferences for a parent-based prevention intervention.MethodsAn anonymous web-based survey was conducted from June 2022 to August 2022. Eligible participants were parents of children aged 11 to 18 years and were residing in Australia at the time of this study. The survey assessed the parents' perceived and actual knowledge about Australian health guidelines for youth, parent and adolescent engagement in health behaviors, parenting style and attitudes, barriers and facilitators to engaging in healthy behaviors, and delivery and component preferences for a parent-based preventive intervention. Descriptive statistics and logistic regressions were conducted to analyze the data.ResultsA total of 179 eligible participants completed the survey. The mean age of the parents was 42.22 (SD 7.03) years, and 63.1% (101/160) were female. Parent-reported sleep duration was high for both parents (mean 8.31, SD 1.00 hours) and adolescents (mean 9.18, SD 0.94 hours). However, the proportion of parents who reported that their child met the national recommendations for physical activity (5/149, 3.4%), vegetable intake (7/126, 5.6%), and weekend recreational screen time (7/130, 5.4%) was very low. Overall, parents' perceived knowledge of health guidelines was moderate, ranging from 50.6% (80/158) for screen time to 72.8% (115/158) for sleep guidelines (for children aged 5-13 years). Actual knowledge was lowest for vegetable intake and physical activity, with only 44.2% (46/104) and 42% (31/74) of parents reporting correct guidelines for these behaviors, respectively. The key issues of concern reported by parents were excessive use of technology, mental health, e-cigarette use, and negative peer relationships. The top-rated delivery method for a parent-based intervention was via a website (53/129, 41.1%). The highest rated intervention component was opportunities for goal-setting (89/126, 70.7% rated very or extremely important), and other important program features were ease of use (89/122, 72.9%), paced learning (79/126, 62.7%), and appropriate program length (74/126, 58.8%).ConclusionsThe findings suggest that such interventions should be brief and web based and should aim to increase parental knowledge of health guidelines; provide opportunities for skill-building, such as goal-setting; and include effective behavior change techniques, such as motivational interviewing and social support. This study will inform the development of future parent-based preventive interventions to prevent multiple lifestyle risk behaviors among adolescents.
| S-EPMC10131774 | biostudies-literature
Project description:Families with rare diseases (RDs) have unmet needs that are often overlooked by health professionals. Describing these needs and the impact of the disease could improve their medical care. A total of 163 surveys were obtained from patients visiting primary care centres in the Valencian Region (Spain), during 2015-2017, with a confirmed or suspected diagnosis of RD. Of the 84.7% with a confirmed diagnosis, 50.4% had a diagnostic delay exceeding one year, and it was more prevalent among adults (62.2%). Families with paediatric patients were in a worse economic situation, with lower incomes and higher monthly disease-related expenses (€300 on average). These expenses were incurred by 66.5% of families and were mainly for medication (40.3%). Among them, 58.5% reported not being able to afford adjuvant therapies. The disease had an impact on 73.1% of families, especially on their routine and emotional state. Expenses, needs, and impacts were more frequent among families of patients with a history of hospitalisation or deterioration. Patients with delayed diagnosis had a higher consumption of drugs prior to diagnosis. People affected by RDs in the Valencian Region need therapies to improve their autonomy and emotional state. Health professionals should be aware of these needs.
| S-EPMC9408677 | biostudies-literature
Project description:ObjectivesPatients diagnosed with pancreatic cancer have the poorest survival prognosis of any cancer. This survey aimed to describe their experiences of care and supportive care needs to inform future service provision.DesignCross-sectional questionnaire survey of patients with pancreatic cancer in the UK.SettingIndividuals at any stage along the care pathway were recruited via five National Health Service sites in the UK, and online, from January to June 2018.Participants274 individuals completed the questionnaire (78% (215) were completed online). Approximately half of participants were diagnosed within the last year (133/274). Of 212 providing gender details, 82 were male and 130 were female. Ninety per cent (192/213) described themselves as White British.Primary outcome measuresExperiences of communication and information; involvement in treatment decisions; supportive care needs.ResultsCommunication with, and care received from, clinical staff were generally reported positively. However, 29% (75/260) of respondents did not receive enough information at diagnosis, and 10% (25/253) felt they were not involved in decisions about their treatment, but would have liked to be. Supportive care needs were greatest in psychological and physical/daily living domains. 49% (108/221) of respondents reported one or more moderate/high unmet needs within the last month, of which the most commonly reported were: dealing with uncertainty about the future; fears about the cancer spreading; not being able to do things they used to; concerns about those close to them; lack of energy; anxiety; feelings of sadness and feeling down/depressed. Experiences were poorer, and unmet supportive care needs greater, in patients with unresectable disease.ConclusionsPatients with pancreatic cancer have unmet information and support needs across the cancer trajectory. Psychological and physical support appears to be the biggest gap in care. Needs should be assessed and supportive care interventions implemented from the point of diagnosis, and monitored regularly to help patients live as good a quality of life as possible.
| S-EPMC6858107 | biostudies-literature
Project description:PurposeThis study aimed to investigate the supportive care needs of Australian melanoma patients and their caregivers to form the basis for improving services.MethodsGeneral 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.ResultsA 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.ConclusionAustralian 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.
| S-EPMC10624748 | biostudies-literature
Project description:BackgroundStudies evaluating health information needs in colorectal cancer (CRC) lack specificity in terms of study samples involving patients. We assessed how health information needs of individuals with CRC are met across the care continuum.MethodsWe administered an international, online based survey. Participants were eligible for the study if they: 1) were 18 years of age or older; 2) received a diagnosis of CRC; and 3) were able to complete the online health survey in English, French, Spanish, or Mandarin. We grouped participants according to treatment status. The survey comprised sections: 1) demographic and cancer characteristics; 2) health information needs; and 3) health status and quality of life. We used multivariable regression models to identify factors associated with having health information needs met and evaluated impacts on health-related outcomes.ResultsWe analyzed survey responses from 1041 participants including 258 who were currently undergoing treatment and 783 who had completed treatment. Findings suggest that information needs regarding CRC treatments were largely met. However, we found unmet information needs regarding psychosocial impacts of CRC. This includes work/employment, mental health, sexual activity, and nutrition and diet. We did not identify significant predictors of having met health information needs, however, among participants undergoing treatment, those with colon cancer were more likely to have met health information needs regarding their treatments as compared to those with rectal cancer (0.125, 95% CI, 0.00 to 0.25, p-value = 0.051).ConclusionsOur study provides a comprehensive assessment of health information needs among individuals with CRC across the care continuum.
| S-EPMC7590465 | biostudies-literature
Project description:BACKGROUND:To assess the importance of different information pathways for patients undergoing elective ENT surgery (General Practitioner, Specialist consultation, pre assessment clinic and consent process as well as printed information material and non medical sources) and to correlate their relative importance with patient and doctor factors METHODS - PATIENTS: Cross - sectional questionnaire survey226 consecutive patients undergoing elective non-oncological otolaryngology procedures at a District General Hospital between May and August 2004 RESULTS:Overall patients were moderately satisfied with the information they received prior to surgery (score 63/100). Although they were generally satisfied with the quality of information they received at their outpatient consultation and at the preadmission clinic, they were less satisfied with the quality of information provided by their GPs and by the quality of self - obtained information. Most importantly, linear regression modeling showed that the overall level of information could be predicted by three factors: The quality of written information received at the hospital, the quality of self-obtained information and the information provided by the specialist at the time of listing for surgery. While patient's education level was correlated with the information process, the age and gender of the patient as well as the grade of the doctor at the outpatients were not associated with his overall levels of satisfaction. CONCLUSION:Although the impact of the initial outpatient consultation for patients undergoing elective surgery can not be over emphasized, written information provided at the hospital as well as patient - initiated, parallel information pathways are at least as important: It is our duty to recognize them and use them for the patient's advantage.
| S-EPMC2556309 | biostudies-literature
Project description:ObjectiveThe current study assessed pregnant individuals' intention to accept routine and COVID-19 vaccines for their baby after birth, and to identify key demographic (e.g., age) and nondemographic characteristics (e.g., prior birth) associated with vaccination intention.MethodsThe authors conducted a cross-sectional survey with pregnant individuals attending prenatal practices affiliated with a large academic medical center and two rural county health departments in the southeastern United States. The survey included 11 questions and was self-administered by pregnant individuals in clinic settings. The final analysis included responses from 443 pregnant individuals.ResultsOnly 67% of pregnant individuals planned to vaccinate their baby with all recommended routine vaccines; an additional 22% reported having questions about recommendations. Only 35% of pregnant individuals said they would vaccinate their baby as soon as possible with a COVID-19 vaccine. Younger pregnant individuals and those identifying as Black or African American had lower routine and COVID-19 vaccination intention. Routine vaccination, but not COVID-19 vaccination intention, was associated with familiarity with routine vaccination schedule, trimester of pregnancy, Hispanic ethnicity, history of prior birth, and having access to a computer.ConclusionStudy findings support differential tailoring of future interventions targeting pregnant individuals to promote routine and COVID-19 vaccines for children.
| S-EPMC9877590 | biostudies-literature
Project description:OBJECTIVES:To identify differences in the mutational profile of endometrial tumours between British White (BW) and South Asian (BSA) women. METHODS:We analysed primary tumours from matched cohorts of British White (BW) and British South Asian (BSA) women resident in Leicestershire diagnosed with EC. Next Generation Sequencing was performed to investigate mutational differences in a panel of 10 genes previously identified as being commonly mutated in EC. The presence of somatic Mismatch Repair (MMR) gene deficiencies was determined by immunohistochemistry. RESULTS:In total, 57 tumours (27 BSA and 30 BW) were sequenced. There was no significant difference in the overall mutation frequency of the 10 genes analysed; however, numerous differences were observed between the groups. There was a positive association between PIK3CA and PTEN mutations in the BSA group, with 78% of PIK3CA-mutant tumours harbouring a PTEN mutation, whereas only 11% of PIK3CA wild-type (wt) tumours were PTEN mutant positive (p = 0.0012). In BW women, 90% of ARID1A mutant tumours had co-existent PI3K pathway mutations versus 50% of wild-type (wt) ARID1A patients (p = 0.0485). This trend was not significant in the BSA group (p = 0.66). The age at diagnosis was significantly higher in the BW group with a somatic MMR gene deficiency compared to those with no deficiency (72.8 years versus 59.6 years, p = 0.007), whereas this difference was not seen in the BSA group (64 years versus 60 years, p = 0.37). CONCLUSION:We have identified differences in the mutational profile of primary EC tumours from BW and BSA women. Further research is needed to confirm these findings and to explore their potential implications for early detection, treatment response and prognosis.
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