Non-patient Population Research Articles

Cervical Cancer Stigma Among Caribbean Population: A Descriptive Paper.

Objectives: Cervical cancer prevention practices are desperately low in the Caribbean. This study aims to describe the cervical cancer stigma and to evaluate the influence of the prevention practices among the Caribbean non-patient population in Jamaica, Grenada, Trinidad and Tobago. Methods: A cross-sectional study involving 1,207 participants was conducted using a culturally trans-created Cancer Stigma Scale for the Caribbean context and supplemented with questions on cervical cancer and HPV/HPV vaccine knowledge and beliefs. Data collection took place online from October 2022 to March 2023. Results: Participants are young, single, well-educated, and have stable financial resources. Over a quarter (26.4%) agreed women with cervical cancer are more isolated in their country. Almost half (47%) of respondents agreed cultural background plays a big part in how they feel about illness and getting well. One in six participants believe women with cervical cancer are treated with less respect than usual by others in their country. Conclusion: Cancer stigma of cervical cancer exists in Jamaica, Trinidad and Tobago, and Grenada. Particularly, cultural background and social norms are closely linked to stigma.

Abstract LB140: Age difference in cervical cancer stigma among Caribbean population

Abstract Introduction Cervical cancer (CCA) is the second most common cancer and one of the leading causes of death among women in the Caribbean region. CCA stigma impedes women from seeking and obtaining relevant healthcare. This study aimed to evaluate age difference in cancer stigma among non-patient populations in Jamaica, Grenada, and Trinidad and Tobago, utilizing a culturally trans-created scale. Methods A cross-sectional study involving 1207 participants was conducted. The survey comprised the adapted Cancer Stigma Scale, supplemented with questions on cervical cancer knowledge and beliefs. Participants' knowledge and attitudes towards the HPV vaccine were also assessed. Data was collected online from October 2022 to March 2023. Statistical analysis was performed using SAS. Results This study included 33.4% of total participants aged 18-25 years, 23.4% aged 26-35 years, 21.4 aged 36-45 years, 10.7% aged 46-55 years, 7.5% aged 56-65 years, and 3.6% aged 65+ years. Chi-squared tests showed age is significantly related to respondents’ opinions on women with CCA are treated with less respect than usual by others (p<.0001), women with CCA must keep it a secret (p=0.03), women with CCA are rejected by family members (p=0.0007), women with CCA are rejected by intimate partners (p<.0001), and intimate partners blame women for having CCA (p=0.003). Additionally, age has significant associations with agreements on negative views of cervical cancer from the community (p<.0001) and family (p<.0001) may discourage women from seeking and obtaining screening and treatment and community members believe CCA is viewed as shameful (p=.0001). Notably, there are more younger respondents (18-25 years) who agreed that women with CCA are rejected by intimate partners (32.3%), and the fear of family reaction and rejection may discourage women from getting further diagnosis after an abnormal Pap smear (48.1%). Discussion Age is an important factor that influences cervical cancer stigma even in Caribbean contexts. Findings of this study indicate younger people may have a more serious stigma, which calls for proper educational programs for cervical cancer screening and treatment. Citation Format: Kamilah Thomas-Purcell, Gaole Song, Diadrey-Anne Sealy, Althea Bailey, Kimlin T. Ashing. Age difference in cervical cancer stigma among Caribbean population [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2024; Part 2 (Late-Breaking, Clinical Trial, and Invited Abstracts); 2024 Apr 5-10; San Diego, CA. Philadelphia (PA): AACR; Cancer Res 2024;84(7_Suppl):Abstract nr LB140.

Quantitative Evaluation of Cancer Stigma among Non-Patient Population in Oman.

Cancer is widely considered as one of the most stigmatized diseases globally, despite scientific advances in the medicine. While most existing literatures focuses on cancer stigma as perceived by patients, there has been limited research on stigma towards cancer among the non-cancer population. In 2014, Marlow et al developed and validated the "Cancer Stigma Scale" (CASS) specifically for the non-Cancer population. This study aims to quantitatively evaluate cancer stigma within the non-patient population in Oman. This is a cross-sectional study conducted in Oman. The Cancer Stigma Scale (CASS) has been used to evaluate the cancer-related stigma among the non-cancer patient population in Oman. A total of 510 participants completed the survey of whom 57.6% were male. The personal responsibility section had the highest mean score, followed by the avoidance and financial discrimination. The lowest mean scores were observed in the danger and policy opposition sections. Female participants showed ore disagreement with cancer stigma statements compared to males. Participants who knew someone with cancer expressed more disagreement with stigma statements than those who did not know anyone with cancer. This study provides a baseline measurement of cancer-related stigma among non-cancer patients in Oman, tilizing the CASS in a representative sample of the population. The results indicate generally low levels of stigma, though certain aspects are more pronounced, varying according to the participants' gender, age, and personal connections to someone with cancer.

COGNITIVE TRAINING APPROACHES TO IMPROVE COGNITION AND ASSOCIATED FUNCTIONS IN MID TO LATE LIFE

Abstract Cognitive Training (CT) has yielded inconsistent benefits in non-patient populations. Despite known cognition/sleep associations, limited studies have investigated CT’s impact on sleep. We examined cognitive and associated outcomes across three CT programs in older adult (OA) insomnia patients [with/without mild cognitive impairment (MCI)] and middle-aged adults (MA) with generalized anxiety disorder (GAD). In Study 1, OAs with insomnia (Mage=67.9±8.0; 16 women/8 men) completed 6-week CT (Nintendo DS-Big Brain Academy; 60 mins/day, 3x/week) and waitlist control (WLC) in a cross-over design. At baseline and post-CT/post-WLC, participants completed NIH toolbox-cognitive tasks. In Study 2, MAs with GAD (Mage=49.8±4.0; 29 women) underwent 8-week CT (Cognifit, n=14) or Trivia Training (TT, n=15), 45 mins/day, 3x/week and completed pre/post Inquisit-cognitive assessments. In Study 3, OAs with insomnia and MCI (Mage=67.6±8.0; 10 women/3 men) completed 8-week CT (Cognifit; 45 mins/day, 3x/week) and pre/post Cambridge Brain Sciences-cognitive and polysomnography-sleep assessments. In Study 1, proportional RAVLT-verbal memory improvement was larger [t(23)=2.01, p=.028] following CT(17%) versus WLC(9%). Similarly, proportional Flanker-inhibition improvement was larger [t(23)=1.71, p=.05] following CT(2%) versus WLC(-.3%). In Study 2, CT improved Posner-attention orienting more than TT [F(1,27)=5.25, p=.03]. In Study 3, CT improved Digit-span-working memory [t(12)=-1.84, p=.045], reduced number of awakenings [t(12)=2.70, p=.01), increased %REM [(t(12)=-1.77,p=.05], and showed trending improvement for spatial planning/reasoning [t(12)=1.70, p=.057] and %Lighter-sleep [t(12)=1.62,p=.066]. CT benefits non-trained cognition (transfer effects) in mid-to-late life individuals with insomnia, GAD and MCI, and shows promise for improving sleep in MCI. Follow-up in larger samples investigating mechanisms underlying CT effects (domain-specific training, sleep improvement) is warranted.

Abstract A058: "That’s our culture...”: A qualitative study on factors that influence cervical cancer stigma in the Caribbean

Abstract Background: Cancer stigma, which encompasses the negative responses of nations, communities, families, and individuals towards those affected by cancer, presents a growing challenge in low-resourced societies and various parts of the world. In particular, cervical cancer (CCA) stigma has become increasingly prevalent in numerous cultures and societies. This stigma is fueled by the fact that nearly 99% of CCA cases and pre-cancerous cervical lesions are attributed to infection with the sexually transmitted human papillomavirus (HPV). Despite the substantial burden CCA stigma and the availability of widely accessible, cost-effective services, Caribbean women exhibit alarmingly low rates of appropriate CCA screening practices and HPV vaccination for their children, both in the U.S. and the Caribbean. To enhance the effectiveness of CCA prevention efforts in the U.S, it is imperative to include studies involving Caribbean nations with significant immigration to the U.S. Objective: This study aimed to explore the manifestations of cancer stigma among men and women aged 18-85 in Grenada, Jamaica, and Trinidad & Tobago, and its potential impact on CCA prevention behaviors. Design and Methods: Employing a community-based participatory research approach, academic institutions collaborated with community leaders in each country to conduct a cross-sectional qualitative study using focus groups. Thematic analysis was performed using MAXQDA data analysis software to examine the role of stigma in CCA prevention behaviors. Results: Three focus groups were conducted in each country, with a total of 69 participants. Major themes emerged regarding the influence of stigma on CCA cancer prevention efforts, including fatalism, cultural views, and confidentiality. Participants demonstrated knowledge of the sexually transmitted nature of HPV, which causes CCA, contributing to the stigmatization of the disease. Stigma was associated with unwarranted assumptions of female promiscuity. The stigmatization of CCA was characterized by blame and the belief that women with the disease should feel ashamed, creating significant barriers to HPV vaccination and pap testing. Cancer was often regarded as a death sentence and rarely discussed among family and friends, further deterring women from seeking screening, early detection, and support. Fear and misinformation surrounding the pap testing procedure, as well as concerns about medical confidentiality, also hindered screening. Conclusion: Generalized cancer stigma (viewing cancer as a death sentence) and specific CCA cancer stigma (shame and blame) have adverse effects on CCA prevention efforts. Further research is needed to assess the multifaceted dimensions of cancer stigma and inform interventions aimed at improving CCA cancer screening and HPV vaccination in the Caribbean. Investigating and addressing the various dimensions of cancer stigma within the non-patient population are required to inform strategies to reduce stigma’s influence; and thus improve CCA screening and HPV vaccination to prevent cancer and save lives. Citation Format: Kamilah B. Thomas-Purcell, Diadrey-Ann Sealy, Althea Bailey, Sherry-Ann Joseph, Kimlin Ashing. "That’s our culture...”: A qualitative study on factors that influence cervical cancer stigma in the Caribbean [abstract]. In: Proceedings of the 16th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2023 Sep 29-Oct 2;Orlando, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2023;32(12 Suppl):Abstract nr A058.

Abstract C142: Cancer stigma and its effect on cervical cancer screening and care seeking in the Caribbean

Abstract Background: Cervical cancer is the second most common cancer in the Caribbean region. It is a major public health challenge despite being preventable via HPV vaccination and Pap testing. Cancer stigma has been shown to serve as a barrier to screening, early diagnosis, and treatment seeking. The stigma associated with cervical cancer hinders progress towards its elimination. The purpose of the study was to assess cancer stigma among a non-patient population of males and females using a culturally trans-created scale in Jamaica, Grenada, and Trinidad and Tobago. Methods: A cross-sectional study was conducted with 1207 participants. The survey was comprised of the adapted Cancer Stigma Scale and included additional questions on cervical cancer knowledge and beliefs. Knowledge and attitudes towards the HPV vaccine were also assessed. The survey was distributed online and, in a paper, based format between October 2022 and March 2023. The data were analyzed using SPSS. Results: Preliminary descriptive statistics found 81% of the respondents were female and 44% had a university level education while 52% had a secondary or trade/technical school level of education. In response to cancer stigma items, age, level of education, gender, and relationship status were significant predictors of cancer stigma (p <0.001). Results shows that almost 1 in 5 indicated a person with cancer is responsible and accountable for their condition. Additionally, 46% responded that getting cancer meant having to mentally prepare for death, and 40% agreed that life is never normal after having cancer. Almost 48% agreed that cancer ruins close relationships, and 29% agreed that cancer ruins a person’s career. Moreover, this endorses that stigma impacts screening, treatment seeking and can lead to social isolation, guilt and blame among persons with abnormal screening and cancer diagnoses. Discussion: These results indicate that cancer is stigmatized in the Caribbean, and it influences screening and care seeking. Our findings suggest the role of stigma must be included in prevention strategies that ought to include broad population education campaigns to reduce stigma towards cervical cancer screening and care seeking- as cervical cancer is highly treatable and even curable when detected at the pre-cancer or early stages. Further, the findings, point to the necessity and urgency of cervical cancer prevention policies to improve screening and vaccination rates to save lives and prevent undue early death of Caribbean women. Citation Format: Diadrey-Anne Sealy, Kamilah Thomas-Purcell, Althea Bailey, Gaole Song, Kimlin Ashing. Cancer stigma and its effect on cervical cancer screening and care seeking in the Caribbean [abstract]. In: Proceedings of the 16th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2023 Sep 29-Oct 2;Orlando, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2023;32(12 Suppl):Abstract nr C142.

The Severity of Fecal Problems Is Negatively Associated With Quality of Life in a Dutch Population Without Bowel Function Comorbidities.

Constipation and fecal incontinence negatively influence quality of life. The association between the severity of fecal problems and quality of life has not been investigated in the general population without bowel function comorbidities. To investigate the association between the severity of constipation and fecal incontinence and quality of life in patients without comorbidities influencing bowel function. A population-based, cross-sectional study. The study involved 3668 Dutch study participants. A survey company conducted a population-wide study of the general Dutch population. Altogether, 5000 Dutch citizens completed the Groningen Defecation and Fecal Continence and Short Form-36 questionnaires. The data on 3668 respondents without comorbidities that could influence bowel function were included for analysis (study group). The severity of constipation (Agachan score) and fecal incontinence (Wexner score) in relation to the quality-of-life scores. In the study group (n = 3668), 487 had constipation (13.3%), 116 had fecal incontinence (3.2%), and 64 had 2 coexisting fecal problems (1.7%). In the multivariable analysis, all quality-of-life domains were negatively associated with the severity of constipation and fecal incontinence. The associations between the severity of constipation and quality of life were stronger (highest: ß = -2.413; 95% CI, -2.681 to -2.145; p < 0.001) than those of fecal incontinence (highest: ß = -1.280; 95% CI, -1.681 to -.880; p < 0.001). We also found that a longer duration of bowel complaints coincided with higher severity scores, especially for constipation. Respondents mostly rated their defecation health as positive, regardless of the severity of their fecal problems. Cross-sectional design. The severity of constipation and fecal incontinence is significantly associated with reduced quality of life, with the severity of constipation having stronger associations than fecal incontinence. Given respondents' unawareness of their fecal problems and the progressive character, timely intervention is advocated. See Video Abstract . ANTECEDENTES:El estreñimiento y la incontinencia fecal influyen negativamente en la calidad de vida. La asociación entre la gravedad de los problemas fecales y la calidad de vida no se ha investigado en la población general sin comorbilidades de la función intestinal.OBJETIVO:Investigar la asociación entre la gravedad del estreñimiento y la incontinencia fecal y la calidad de vida en la población holandesa general sin comorbilidades que influyan en la función intestinal.DISEÑO:Estudio transversal de base poblacional.ENTORNO CLINICO:El estudio involucró a 3668 participantes holandeses.PACIENTES:Una empresa de encuestas realizó un estudio poblacional de la población holandesa en general. En total, 5.000 ciudadanos holandeses completaron los cuestionarios Groningen Defecation and Fecal Continence y Short-Form 36. Se incluyeron para el análisis los datos de 3668 encuestados sin comorbilidades que pudieran influir en la función intestinal (grupo de estudio).PRINCIPALES MEDIDAS DE RESULTADO:La gravedad del estreñimiento (puntuación de Agachan) y la incontinencia fecal (puntuación de Wexner) en relación con las puntuaciones de calidad de vida.RESULTADOS:En el grupo de estudio (n = 3668), 487 tenían estreñimiento (13,3%), 116 tenían incontinencia fecal (3,2%) y 64 tenían 2 problemas fecales coexistentes (1,7%). En el análisis multivariable, todos los dominios de calidad de vida se asociaron negativamente con la gravedad del estreñimiento y la incontinencia fecal. Las asociaciones entre la gravedad del estreñimiento y la calidad de vida fueron más fuertes (más alta: ß = -2,413; IC del 95 %, -2,681 a -2,145; p < 0,001) que las de la incontinencia fecal (más alta: ß = -1,280; 95 IC %: -1,681 a -0,880; p < 0,001). También encontramos que una mayor duración de las molestias intestinales coincidió con puntuaciones de gravedad más altas, especialmente para el estreñimiento. La mayoría de los encuestados calificaron su salud en la defecación como positiva, independientemente de la gravedad de sus problemas fecales.LIMITACIONES:Diseño transversal.CONCLUSIONES:La gravedad del estreñimiento y la incontinencia fecal se asocia significativamente con una calidad de vida reducida; la gravedad del estreñimiento tiene asociaciones más fuertes que la incontinencia fecal. Dado el desconocimiento de los encuestados sobre sus problemas fecales y el carácter progresivo, se recomienda una intervención oportuna. (Traducción- Dr. Francisco M. Abarca-Rendon ).

Barriers to brain health behaviours: results from the Five Lives Brain Health Ireland Survey.

Modifiable risk factors for dementia remain prevalent in Ireland. A detailed examination of barriers to risk reduction behaviours in an Irish context has heretofore been lacking. Many existing studies examining barriers to brain health behaviours fail to examine how they might vary across different modifiable risk factors. This study undertook a detailed assessment of barriers to individual risk reduction behaviours. As existing research suggests that barriers may vary across sociodemographic factors, we sought to investigate the distribution of barriers across age, gender, educational status, and household income. The Five Lives Brain Health Ireland Survey is a cross-sectional survey that was distributed online amongst a non-patient population. The survey captured the following: (1) Sociodemographic factors; (2) Barriers to brain health behaviours; (3) Exposure to, and knowledge of, modifiable risk factors for dementia, namely diet, social interaction, exercise, hypertension, sleep, current low mood/depression, current smoking, alcohol consumption, cognitive stimulation, hearing impairment, diabetes, air pollution, and head injury; (4) Participants' perceptions regarding potential for dementia prevention, and risk reduction. Lack of motivation was the most prevalent barrier to consuming a healthy diet (64%, n = 213), physical activity (77.7%, n = 167), smoking cessation (68%, n = 85), and moderation of alcohol intake (56.3%, n = 67). Practical factors were the most prevalent barriers to addressing low mood (56.5%, n = 87), air pollution (30.1%, n = 58), hearing impairment (63.8%, n = 44), diabetes (11.1%, n = 5), and head injury (80%, n = 8). Emotional factors were the most prevalent barriers to engaging in mentally stimulating activity (56.9%, n = 66), social activity (54.9%, n = 302), and good sleep (70.1%, n = 129). Lack of knowledge was the most prevalent barrier to hypertension control (14.4%, n = 29). Distribution of barriers varied across age, gender, educational status, and household income. This study investigated barriers to lifestyle change to improve brain health in an Irish sample of adults aged 50 and above. Detailed subtyping of barriers, as well as examination of differences according to age, gender, education, and income were undertaken. The heterogeneity of barriers to brain health behaviours revealed in this study highlights the necessity to tailor public health interventions to their target population, taking into account the gender, age, educational status, and income of recipients.

Abstract 75: Swahili Translation and Cultural Adaptation of the Cancer Stigma Scale (CASS) for Use in the Non-Patient Population in Tanzania

Abstract Purpose: The Cataldo Cancer Stigma Scale (CASS) was developed to measure patient experienced stigma, and further modified for use in non-patient communities. The aim of this study was to adapt a Swahili language version of the CASS for use in the Tanzanian non-patient community, to identify the current level of stigma towards children with cancerand create a measure to monitor changes in perceptions following future community based interventions. Methods: An expert group of medical providers, community advisors and social scientists reviewed the 26 original statements in the CASS survey to determine relevancy in the Tanzanian context or Swahili language. A team of six native Swahili speakers was used to translate, back translate, reconcile, and adjudicate differences during the translation process. The final forward translation had in independent review by three bilingual translation experts to select the most appropriate translation for each item. The translated items were further refined using concurrent cognitive interviewing. Each round of interviews included five non-patient community members in the Mwanza region of Tanzania, and continued until &amp;gt;80% concordance reached. Results: Three rounds of revisions were completed with 15 respondents in total. A total of 62% of questions (22/36) were fully comprehended after the initial evaluation. Additional reviews included grammar and specific Swahili word selection changes to clarify the item’s meaning. After three rounds of interviews, all questions obtained at least 80% comprehension with no further revisions required. The final survey included 23 core questions and 10 alternate questions to target community beliefs identified during qualitative interviews. These included personal responsibility items evaluating the perception that cancer is caused by witchcraft and that cancer in children is a form of ancestral punishment. Conclusions: A Swahili adapted CASS for use in the non-patient community had good comprehension among rural and urban members of the Mwanza community. The survey will require additional quantitative validation to determine both the structural validity and reliability of the constructs. This adapted tool will allow for a meaningful intervention response evaluation that can be used in cancer stigma research throughout East Africa. Citation Format: Kristin Schroeder, Kashinje Mayolwa, Suhana Posani, Norbert Mtenga, Hong Pham, Zakia Meck, Hillary Sued, Francis Karia, Erica Sanga. Swahili Translation and Cultural Adaptation of the Cancer Stigma Scale (CASS) for Use in the Non-Patient Population in Tanzania [abstract]. In: Proceedings of the 11th Annual Symposium on Global Cancer Research; Closing the Research-to-Implementation Gap; 2023 Apr 4-6. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2023;32(6_Suppl):Abstract nr 75.

Cancer Stigma in Non-patient Population Visiting B&amp;B Hospital, Lalitpur, Nepal: A Descriptive Cross-sectional Study

Introduction: Research on various aspects of cancer, including stigma among cancer patients have received considerable interest in the recent years, but very few studies have studied cancer related stigma in healthy population. This study aimed to assess the situation of cancer stigma among the non-patient population.Methods: This cross-sectional study included 330 purposively selected non-patient population of age 18-45 years visiting B&amp;B Hospital, Lalitpur, Nepal from March 2019 to August 2019. The data was collected from self-administered questionnaires. Caner stigma was measured with the validated Cancer Stigma Scale, which assesses six sub domains viz. severity, personal responsibility, awkwardness, avoidance, policy opposition and financial discrimination. Results: The highest score in Cancer Stigma Scale was found in the “severity”, while the lowest in the “policy opposition”. The policy opposition statements “More government funding should be spent on care and treatment of those with cancer” and “cancer patients should be given top priority” attracted the highest level of agreement (75.4 - 81.6%) followed by the statement about their comfort with cancer patients (59.5%), the acceptability for insurance companies to reconsider a policy once diagnosed with cancer (54.5%). A similar proportion felt getting cancer is to be prepared for death (38.5%) and a cancer patient is to be blamed for its condition (33.7%). Conclusions: Cancer stigma persists in Nepal with varying level in different domains of stigma.

Mapping the available evidence on the impact of ingested live microbes on health: a scoping review protocol

IntroductionIt has been hypothesised that the regular consumption of safe, live microbes confers health-promoting attributes, including the prevention of disease. To address this hypothesis, we propose a scoping review approach...

Psychometric Properties of the Patient Activation Measure in Family Caregivers of Patients With Chronic Illnesses.

The Patient Activation Measure (PAM) is used clinically and in research to measure an individual's knowledge, skills, and confidence related to their health management engagement. Despite the use of "patient" in the title, the instrument can be used in nonpatient populations. A group at high risk for low activation concerning their own health is family caregivers of patients with chronic illnesses. The psychometric properties of the PAM have not been established in family caregivers. This study aimed to examine the psychometric properties of the PAM 10-item version (PAM-10) in a sample of family caregivers of patients with chronic illnesses. Our focus was on family caregivers' health activation of their own healthcare needs. We evaluated the internal consistency reliability of the PAM-10 in a sample of 277 family caregivers. Item-total correlations and interitem correlations were used to assess item homogeneity. Construct validity of the PAM-10 was examined using exploratory factor analysis and testing hypotheses on known relationships. The PAM-10 demonstrated adequate internal consistency. Item-total correlation coefficients and interitem correlation coefficients were acceptable. Construct validity of the instrument was supported. Factor analysis yielded two factors that explained 62.3% of the variance in the model. Lower levels of depressive symptoms were significantly associated with better activation, providing evidence of construct validity. Caregivers with high activation levels were significantly more likely to engage in and adhere to self-care behaviors such as regular exercise, eating a healthy diet, and engaging in stress reduction strategies. This study demonstrated that the PAM-10 is a reliable and valid measure for family caregivers of patients with chronic illnesses to measure caregivers' health activation of their own healthcare needs.

Addressing privacy concerns for mobile and wearable devices sensors: Small-group interviews with healthy adults and cancer survivors.

Mobile and wearable sensor technology is increasingly common and accessible. The aim of this study was to explore individuals' perceptions and acceptability of mobile and wearable sensors, as well as concerns. Purposive sampling was used to recruit non-patient adults (n = 22) and cancer survivors (n = 17) for face-to-face and virtual small-group interviews. Reflexive thematic analysis of the data focused on privacy concerns. Participants reported that privacy was generally not a concern for sensor adoptions for physical activity health interventions except for health insurer access. The patient perspectives as reported in the findings illustrate the need for transparency between potential adopters and users of mobile and wearable devices and health care practitioners, as well as secure privacy policies for health insurers. Older adults often are perceived as unwilling to adopt mHealth technologies for many reasons, including privacy concerns. This study examined an important patient population, cancer survivors, who are often overlooked yet may benefit from targeted health interventions using mHealth technologies, and compared their responses with a non-patient population for prevention purposes. Our findings suggest that one's lived health experiences (cancer survivorship) are more influential than one's age in adopting mHealth technologies.

The estimation of health state utility values in rare diseases: do the approaches in submissions for NICE technology appraisals reflect the existing literature? A scoping review

BackgroundRare diseases negatively impact patients’ quality of life, but the estimation of health state utility values (HSUVs) in research studies and cost–utility models for health technology assessment is challenging.ObjectivesThis study compared the methods for estimating the HSUVs included in manufacturers’ submissions of orphan drugs to the National Institute for Health and Care Excellence (NICE) with those of published studies addressing the same rare diseases to understand whether manufacturers fully exploited the existing literature in developing their economic models.MethodsAll NICE Technology Appraisal (TA) and Highly Specialized Technologies (HST) guidance documents of non-cancer European Medicines Agency (EMA) orphan medicinal products were reviewed and compared with any published primary studies, retrieved via PubMed until November 2020, and estimating HSUVs for the same conditions addressed in manufacturers’ submissions.ResultsWe identified 22 NICE TA/HST appraisal reports addressing 19 different rare diseases. Sixteen reports presented original HSUVs estimated using EQ-5D or Health Utility Index (n = 12), direct methods (n = 2) or mapping (n = 2), while the other six included values obtained from the literature only. In parallel, we identified 111 published studies: 86.6% used preference-based measures (mainly EQ-5D, 60.7%), 12.5% direct techniques, and 2.7% mapping. The collection of values from non-patient populations (using ‘vignettes’) was more frequent in manufacturers’ submissions than in the literature (22.7% vs. 8.0%).ConclusionsThe agreement on methodological choices between manufacturers’ submissions and published literature was only partial. More efforts should be made by manufacturers to accurately reflect the academic literature and its methodological recommendations in orphan drugs submissions.

Laparoscopic Janeway gastrostomy as preferred enteral access in specific patient populations: A systematic review and case series.

BACKGROUNDNutrition is one of the fundamental needs of both patient and non-patient populations. General trends promote enteral feeding as a superior route, with the most common enteral access being the percutaneous endoscopic gastrostomy (PEG) as the first-line procedure, with surgical access including Witzel gastrostomy, Stamm Gastrostomy, Janeway gastrostomy (JG) as secondary means.AIMTo describe cases and technique of laparoscopic Janeway gastrostomy (LJG) and perform a systematic review of the data.METHODSWe successfully performed two LJG procedures, after which we conducted a literature review of all documented cases of LJG from 1991 to 2022. We surveyed these cases to show the efficacy of LJG and provide comparisons to other existing procedures with primary outcomes of operative time, complications, duration of gastrostomy use, and application settings. The data were then extracted and assessed on the basis of the Reference Citation Analysis (https://www.referencecitationanalysis.com/).RESULTSWe presented two cases of LJG, detailing the simplicity and benefits of this technique. We subsequently identified 26 articles and 56 cases of LJG and extrapolated the data relating to our outcome measures. We could show the potential of LJG as a viable and preferred option in certain patient populations requiring enteral access, drawing reference to its favorable outcome profile and low complication rate.CONCLUSIONThe LJG is a simple, reproducible procedure with a favorable complication profile. By its technical ease and benefits relating to the gastric tube formed, we propose this procedure as a viable, favorable enteral access in patients with the need for permanent or palliative gastrostomy, those with neurologic disease, agitation or at high risk of gastrostomy dislodgement, or where PEG may be infeasible.

Incidence and Clinical Presentation of Temporo-Mandibular Joint Disorders and their Association with Psychological Distress and Para-Functional Habits in a Non-Patient Population.

The study aims at finding the incidence of temporo-mandibular joint disorders (TMDs) in a non-patient population and relates their association with psychological distress and parafunctional habits. A DC/TMD questionnaire and DASS-21 scale survey were completed by selected participants followed by clinical examination of TMDs symptoms in sample population. A study sample of 855 participants revealed 36.65% population with various TMDs symptoms, while 63.5% population had no TMDs symptoms. 50.8% study participants were men, and 49.2% were women. Of all affected population, 16.2% had pain-related TMDs, 12.39% had intra-articular TMDs symptoms, and 8.07% had TMJ pain associated with pain or dysfunction. For all TMDs symptoms groups, the strongest correlations were for depression, while no significant associations were observed with parafunctional habits in all groups. Overall psychological distress and anxiety increased the prospects of TMDs symptoms. Clinical factors like muscle tenderness, crossbite and deep vertical overlap seem to be significant etiological factors, while angle molar relationship and parafunctional habits do not seem to be significant etiologic factors in TMDs.

Towards responsible ctDNA-based multi-cancer screening: a preliminary exploration and discussion of ethically relevant aspects

While testing for easily accessible biomarkers in the circulation (“liquid biopsy”) has found its way to clinical cancer care, a further expected development is its use as a “universal” early detection test in population screening for cancer. A promising marker for such screening is circulating cell-free fragments of tumor DNA, shed into the circulation during tumor cell turnover. Several blood-based “multicancer early detection (MCED) tests” have recently been developed - but still need validation in large-scale studies involving non-patient populations. In this paper, we proactively explore the ethical aspects of this development. We refer to an often quoted synthesis of the internationally accepted framework of principles for responsible screening as first drawn up for the World Health Organisation (WHO) by Wilson and Junger 50 years ago and further developed and fine-tuned ever since. As our analysis suggests, some specific ethical issues and concerns about potential MCED screening connect to the fact that cancer is not just one disease. As a consequence, not all findings will have the same clinical utility. We discuss this against the background of earlier debates pertaining to broad scope forms of screening in other contexts, specifically newborn and reproductive genetic screening. We highlight the guidance provided by some of the criteria from the screening framework that seems most relevant in this connection: the need for screening objectives to be defined at the outset, the need for mechanisms to minimize potential risks, and the requirement that, for those participating in the screening, the overall benefits outweigh the harm.

Impact of stigma and stigma-focused interventions on screening and treatment outcomes in cancer patients.

BackgroundStigma is known to negatively influence cancer patients’ psychosocial behaviour and treatment outcomes. The aim of this study was to systematically review the current data on cancer-related stigma across different populations and identify effective interventions used to address it.MethodologyThe protocol, search, appraisal, synthesis, analysis and reporting framework was used for conducting this systematic literature review. CINAHL, PubMed, PsycINFO and Google Scholar databases were searched using the different combination of keywords that include ‘cancer stigma’. Articles publication period was set for 2010–2020. A total of 54 articles (31 quantitative, 19 qualitative, 2 mixed methods and 2 scoping reviews) that met inclusion criteria were reviewed out of the 958 articles initially identified. Quality assessment of included studies revealed the studies had varying levels of methodological quality. Extracted data were organised and narratively analysed.ResultsCancer stigma was expressed across different segments of the society including amongst the elites and healthcare providers. Developing countries had higher rates of stigma reported and experience of stigma varied by cancer type. Cancer was consistently associated with imminent death in all studies reviewed. Cancer patients experiencing stigma were more inclined to conceal their diagnosis and to seek medical help later. Whilst cancer stigma majorly resulted in negative psychosocial outcomes in patients, there were also instances of posttraumatic growth emanating from the stigma experienced. Literature on cancer-related stigma interventions was scant.ConclusionCancer related stigma remains high in both clinical settings and amongst the general public. There is need for more interventions to combat cancer stigma and its effect in both patient and non-patient population. Anti-cancer public enlightenment campaigns should be sensitively designed to not further fuel stigma against patients with certain types of cancers.

A qualitative analysis of barriers and facilitators to reducing sedentary time in adults with chronic low back pain

BackgroundSedentary time (SED) is associated with many detrimental health outcomes, yet little is known about what factors influence one’s ability to reduce SED. Even less is known about these factors in specific patient populations for whom high levels of SED may influence symptoms, such as those with chronic low back pain (cLBP). The purpose of this study was to qualitatively explore participants’ perceptions of factors that influenced their ability to reduce SED across an 8-week intervention to reduce SED in adults with cLBP and elevated depressive symptoms.MethodsThree months after a theory-based intervention to break up and reduce sitting, semi-structured interviews explored factors that influenced reducing SED. Three researchers independently coded each conversation. Codes were charted and mapped with participants reviewing their own transcripts and the merged codes. The research team then defined key themes. Factors that were perceived to either facilitate behavior change or acted as barriers were identified and thematized as positive or negative determinants.ResultsCommon barriers for reducing SED included environmental constraints, opposing social norms, and productivity; these barriers were frequently encountered in the workplace. Common facilitators for reducing SED included habit development, self-monitoring tools, restructuring the physical environment, and social accountability. Notably, back pain was not a frequently reported barrier or facilitator for reducing SED.ConclusionThis sample of patients with cLBP and elevated depressive symptoms had similar determinants for reducing SED as previously reported in non-patient populations and did not appear to need strategies specific to dealing with chronic pain. Since work-related social norms and environmental factors were perceived as significant barriers to sitting less, workplace interventions that provide standing desks, offer standing meetings rooms, and/or institution-wide standing breaks may help reduce SED at work. The use of an activity monitor with sitting reminders and education regarding how to use the reminders as external cues to develop new sitting habits may also aid in adoption and adherence to this behavior change across settings. Developing coping plans and restructuring physical environments were perceived as successful strategies for overcoming social and environmental barriers. Future interventions targeting SED reductions may benefit from incorporating these strategies.

Quality of life and mortality in the general population: a systematic review and meta-analysis

BackgroundQuality of life (QoL) is multi-dimensional concept of an individual’ general well-being status in relation to their value, environment, cultural and social context in which they live. This study aimed to quantitatively synthesise available evidence on the association between QoL and mortality in the general population.MethodsAn electronic search was conducted using three bibliographic databases, MEDLINE, EMBASE and PsycINFO. Inclusion criteria were studies that assessed QoL using standardized tools and examined mortality risk in a non-patient population. Qualitative data synthesis and meta-analyses using a random-effects model were performed.ResultsOf 4184 articles identified, 47 were eligible for inclusion, involving approximately 1,200,000 participants. Studies were highly heterogeneous in terms of QoL measures, population characteristics and data analysis. In total, 43 studies (91.5%) reported that better QoL was associated with lower mortality risk. The results of four meta-analyses indicated that higher health-related QoL (HRQoL) is associated with lower mortality risk, which was consistent for overall HRQoL (HR 0.633, 95% CI: 0.514 to 0.780), physical function (HR 0.987, 95% CI: 0.982 to 0.992), physical component score (OR 0.950, 95% CI: 0.935 to 0.965), and mental component score (OR 0.980, 95% CI: 0.969 to 0.992).ConclusionThese findings provide evidence that better QoL/HRQoL was associated with lower mortality risk. The utility of these measures in predicting mortality risk indicates that they should be considered further as potential screening tools in general clinical practice, beyond the traditional objective measures such as body mass index and the results of laboratory tests.