Investigating the healthcare-seeking behaviors of mobile phone users to improve cervical cancer screening in rural Uganda.

OBJECTIVE: Cervical cancer is the leading cause of cancer in low- and middle-income countries, despite being preventable. Uganda, which lacks an effective screening program, has one of the highest global cervical cancer incidence rates. Mobile health (mHealth) technology has the potential to improve healthcare-seeking behaviors and access. The present study describes the connection between mobile phone access and healthcare-seeking behaviors in rural Uganda. METHODS: Women were eligible for this cross-sectional study if they had no prior screening or treatment for cervical cancer in the past 5 years, were aged 30 to 49 years old, and were residents of the South Busoga Forest reserve. Survey data was analyzed using descriptive statistics and chi-square tests. RESULTS: Of the 1434 participants included in the analysis, 91.4% reported having access to a mobile phone. Most respondents were aged 30-40 years, had a partner, had ≤primary education, and were farmers. Participants with mobile phone access were significantly more likely to report attending a healthcare outreach visit (access = 87.3%, no access = 72.6%, P < 0.001) or visiting a health center (access = 96.9%, no access = 93.5%, P < 0.001). Participants in both groups had largely positive attitudes around and good knowledge of cervical cancer screening. CONCLUSION: While attendance to healthcare services was high amongst participants, those with mobile phone access were more likely to seek healthcare services. Further inquiry into this association between mobile phone access and healthcare-seeking behavior is needed to optimize the improvements to cervical cancer screening when implementing interventions such as mHealth technology.

The economic burden of cervical cancer on women in Uganda: Findings from a cross-sectional study conducted at two public cervical cancer clinics.

There is limited research on how a cervical cancer diagnosis financially impacts women and their families in Uganda. This analysis aimed to describe the economic impact of cervical cancer treatment, including how it differs by socio-economic status (SES) in Uganda. We conducted a cross-sectional study from September 19, 2022 to January 17, 2023. Women were recruited from the Uganda Cancer Institute and Jinja Regional Referral Hospital, and were eligible if they were ≥ of 18 years and being treated for cervical cancer. Participants completed a survey that included questions about their out-of-pocket costs, unpaid labor, and family's economic situation. A wealth index was constructed to determine their SES. Descriptive statistics were reported. Of the 338 participants, 183 were from the lower SES. Women from the lower SES were significantly more likely to be older, have ≤ primary school education, and have a more advanced stage of cervical cancer. Over 90% of participants in both groups reported paying out-of-pocket for cervical cancer. Only 15 participants stopped treatment because they could not afford it. Women of a lower SES were significantly more likely to report borrowing money (higher SES n = 47, 30.5%; lower SES n = 84, 46.4%; p-value = 0.004) and selling possessions (higher SES n = 47, 30.5%; lower SES n = 90, 49.7%; p-value = 0.006) to pay for care. Both SES groups reported a decrease in the amount of time that they spent caring for their children since their cervical cancer diagnosis (higher SES n = 34, 31.2%; lower SES n = 36, 29.8%). Regardless of their SES, women in Uganda incur out-of-pocket costs related to their cervical cancer treatment. However, there are inequities as women from the lower SES groups were more likely to borrow funds to afford treatment. Alternative payment models and further economic support could help alleviate the financial burden of cervical cancer care in Uganda.

The burden of travelling for cervical cancer treatment in Uganda: A mixed-method study.

BACKGROUND: Uganda has one of the highest rates of cervical cancer in the world. Many women are diagnosed and treated with advanced stages of the disease. With only one facility offering comprehensive cervical cancer care in Uganda, many women are required to travel significant distances and spend time away from their homes to receive cervical cancer care. It is important to understand the burden of time away from home while attending treatment because it can inform the expansion of cervical cancer treatment programmes. The aim of this mixed-methods paper is to describe how the distance to cervical cancer treatment locations impacts women in Uganda. METHODS: Women were recruited from 19 September, 2022, to 17 January, 2023, at the Uganda Cancer Institute (UCI) and the cancer clinic at Jinja Regional Referral Hospital (JRRF). Women were eligible for the study if they were (i) aged ≥18 years with a histopathologic diagnosis of cervical cancer; (ii) being treated at the UCI or JRRF for cervical cancer; and (iii) able to provide consent to participate in the study in English, Luganda, Lusoga, Luo, or Runyankole. All participants completed a quantitative survey and a selected group was sampled for semi-structured interviews. Data were analysed using the convergent parallel mixed-methods approach. Descriptive statistics were reported for the quantitative data and qualitative data using an inductive-deductive thematic analysis approach. RESULTS: In all, 351 women participated in the quantitative section of the study and 24 in the qualitative. The quantitative and qualitative findings largely aligned and supported one another. Women reported travelling up to 14 h to receive treatment and 20% noted that they would spend three or more nights away from home during their current visit. Major themes of the qualitative include means of transportation, spending the night away from home, and financial factors. CONCLUSION: Our findings show that travelling to obtain cervical cancer care can be a significant burden for women in Uganda. Approaches should be considered to reduce this burden such as additional satellite cervical cancer clinics or subsidised transportation options.

Understanding the cervical cancer self-collection preferences of women living in urban and rural Rwanda.

Cervical cancer is a leading cause of cancer among women in low- and middle-income countries. Women in Rwanda have high rates of cervical cancer due to limited access to effective screening methods. Research in other low-resource settings similar to Rwanda has shown that HPV-based self-collection is an effective cervical cancer screening method. This study aims to compare the preferences of Rwandan women in urban and rural settings toward self-collection and to report on factors related to self-collection amenability. A cross-sectional survey was conducted from June 1-9, 2022. Women were recruited from one urban and one rural clinic in Rwanda. Women were eligible for the study if they were ≥ 18 years and spoke Kinyarwanda or English. The survey consisted of 51 questions investigating demographics and attitudes towards self-collection for cervical cancer screening. We reported descriptive statistics stratified by urban and rural sites. In total, 169 urban and 205 rural women completed the survey. The majority of respondents at both sites had a primary school or lower education and were in a relationship. Both urban and rural respondents were open to self-collection; however, rates were higher in the rural site (79.9% urban and 95.6% rural; p-value<0.001). Similarly, women in rural areas were more likely to report feeling unembarrassed about self-collection (65.3% of urban, 76.8% of rural; p-value<0.001). Notably, almost all urban and rural respondents (97.6% urban and 98.5% rural) stated they would go for a cervical cancer pelvic examination to a nearby health center if their self-collected results indicated any concern (p-value = 0.731). Rwandan women in both urban and rural areas largely support self-collection for cervical cancer screening. Further research is needed to better understand how to implement self-collection screening services in Rwanda.

Impact of Loneliness and Social Isolation on Mental Health Outcomes Among Individuals With Rheumatic Diseases During the COVID-19 Pandemic.

OBJECTIVE: The study objective was to assess mental and social health outcomes for individuals with rheumatic disease during the COVID-19 pandemic and evaluate the relationship of loneliness and social isolation with depression and anxiety. METHODS: We administered an international cross-sectional online survey to individuals with rheumatic disease(s) (≥18 years) between April 2020 and September 2020, with a follow-up survey from December 2020 to February 2021. We used questionnaires to evaluate loneliness (3-item UCLA Loneliness Scale [UCLA-3]), social isolation (Lubben Social Network Scale [LSNS-6]), depression (Patient Health Questionnaire [PHQ-9]), and anxiety (Generalized Anxiety Disorder 7-item [GAD-7] Scale). We used multivariable linear regression models to evaluate the cross-sectional associations of loneliness and social isolation with depression and anxiety at baseline. RESULTS: Seven hundred eighteen individuals (91.4% women, mean age: 45.4 ± 14.2 years) participated in the baseline survey, and 344 completed the follow-up survey. Overall, 51.1% of participants experienced loneliness (UCLA-3 score ≥6) and 30.3% experienced social isolation (LSNS-6 score <12) at baseline. Depression (PHQ-9 score ≥10) and anxiety (GAD-7 score ≥10) were experienced by 42.8% and 34.0% of participants at baseline, respectively. Multivariable models showed that experiencing both loneliness and social isolation, in comparison to experiencing neither, was significantly associated with an average 7.27 higher depression score (ß = 7.27; 95% confidence interval [CI]: 6.08-8.47) and 5.14 higher anxiety score (ß = 5.14; 95% CI: 4.00-6.28). CONCLUSION: Aside from showing substantial experience of loneliness and social isolation during the COVID-19 pandemic, our survey showed significant associations with depression and anxiety. Patient supports to address social health have potential implications for also supporting mental health.

The role of daughters in relation to their mother's cervical cancer diagnosis and treatment in Guatemala: a descriptive study.

PURPOSE: There is currently no information on how caregivers for women diagnosed with cervical cancer in Guatemala, particularly daughters, are affected by their supportive role. This study's objective was to describe the support role of caregivers in the country, with a focus on daughters with a mother diagnosed with cervical cancer. METHODS: This analysis utilizes data from a cross-sectional study which aimed to understand pathways to cervical cancer care. Women seeking cervical cancer treatment at the Instituto de Cancerologia (INCAN) in Guatemala City, Guatemala and their companions were surveyed. Descriptive statistics were calculated. RESULTS: One hundred forty-five women seeking treatment and 71 companions participated in the study. Patient's daughters were most frequently reported as the person who provided the most support (51%) and as the most reported to have encouraged the patient to seek care. Furthermore, daughters were noted as the person most reported to fulfill the major household and livelihood roles of the patient while they were seeking or receiving treatment (38.0%). Most daughters reported that they were missing housework (77%), childcare (63%), and income-earning activities (60%) to attend the appointment with their mothers. CONCLUSION: Our study suggests that in Guatemala cervical cancer patient's daughters have a significant support role in their mother's cancer diagnosis. Furthermore, we found that while caring for their mothers, daughters in Guatemala are often unable to participate in their primary labor activities. This highlights the additional burden that cervical cancer has on women in Latin America.

The social and economic impacts of cervical cancer on women and children in low- and middle-income countries: A systematic review.

BACKGROUND: There is limited knowledge on the social and economic impacts of a diagnosis of cervical cancer on women and children in low- and middle-income countries (LMICs). OBJECTIVES: To determine the social and economic impacts associated with cervical cancer among women and children living in LMICs. SEARCH STRATEGY: The MEDLINE, PsychInfo, CINAHL, Pais International, and CAB Global Health databases were systematically searched to retrieve studies up to June 2021. SELECTION CRITERIA: Studies were included if they reported on either the social or economic impacts of women or children in a LMIC. DATA COLLECTION AND ANALYSIS: Data was independently extracted by two co-authors. The authors performed a quality assessment on all included articles. MAIN RESULTS: In all, 53 studies were included in the final review. Social impacts identified included social support, education, and independence. Economic impacts included employment and financial security. No study reported the economic impact on children. Studies that utilized quantitative methods typically reported more positive results than those that utilized qualitative methods. CONCLUSIONS: Additional mixed-methods research is needed to further understand the social support needs of women with cervical cancer. Furthermore, research is needed on the impact of a mother's diagnosis of cervical cancer on her children.

Understanding the association between informed choice and long-term reversible contraception among Ugandan women: Findings from the 2016 Demographic Health Survey.

OBJECTIVES: To understand the relationship between informed choice and long-acting reversible contraceptive (LARC) use among women aged 15-49 years in Uganda after adjusting for potential confounding. METHODS: This cross-sectional study uses data from the 2016 Uganda Standard Demographic and Health Survey. Thomas-Rao corrections to a χ2 test were used for the bivariable analysis. A design-adjusted multivariable logistic regression was used to estimate the association between informed choice and LARC use. Propensity score matching was conducted as a sensitivity analysis. RESULTS: In all, 3646 women were included in the analysis and 975 reported using a LARC. In the design-adjusted multivariable analysis, the odds of reporting LARC usage were 1.98 (95% confidence interval 1.61-2.43) times higher among women who reported informed choice compared with those who did not. The subsequent propensity score analysis reported similar findings. CONCLUSION: Providing informed choice can help to increase the number of women who use LARC in Uganda. As such, the Ugandan Ministry of Health should further expand access to family planning counseling as it could contribute to the reduction of unplanned pregnancies across Uganda with the use of LARC.

Reproductive Health Experiences of Females Diagnosed with Young-Onset Colorectal Cancer: A Multi-Method Cross-Sectional Survey.

OBJECTIVE: Given the increasing risk of young-onset colorectal cancer (yCRC) among adults under 50 years, it is important to understand impacts on reproductive health. Our objective was to assess experiences with reproductive health after yCRC diagnosis among females. METHODS: We conducted a cross-sectional study among females, 18 years or older, who have been diagnosed yCRC and are able to communicate in English. Data were gathered using an online survey involving both quantitative (e.g., multiple choice) and qualitative (e.g., open-ended text) questions on pregnancy history, influence of yCRC on reproductive decisions, and experiences with reproductive healthcare. RESULTS: Altogether, 101 females with yCRC participated, including 23 who had never been pregnant and 78 who had been pregnant. yCRC influenced family planning goals for one-third of participants. Furthermore, compared to participants who completed treatment, those currently undergoing treatment had higher odds of indicating their yCRC diagnosis influenced family planning goals (adjusted odds ratio 4.93; 95% confidence interval 1.29 to 18.78). Although 53 (52.5%) participants indicated having discussions regarding reproductive health with healthcare provider(s), 44 (43.6%) did not. Content analysis of open-ended survey questions identified themes on the emotional impacts, experiences with reproductive healthcare, reproductive and family planning considerations, and the related issue of sexual health impacts of yCRC. CONCLUSIONS: Gaps in care, related to limited reproductive health discussions, influence of yCRC on family planning, and experiencing lasting reproductive health impacts highlight the need for improving reproductive healthcare, particularly for females diagnosed with yCRC.

How do individuals with colorectal cancer perceive the term "cancer survivor": a cross-sectional survey.

BACKGROUND: There are growing discussions regarding the term "cancer survivor," particularly how patients with cancer relate to it. OBJECTIVE: To assess how individuals diagnosed with colorectal cancer (CRC) perceive the term "cancer survivor." METHODS: We conducted an international cross-sectional study and, using social media, invited individuals who were ≥18 years; received a diagnosis for CRC; and can communicate in English. We administered an online survey comprising both quantitative (e.g., multiple choice) and qualitative (e.g., open-ended) questions. We used logistic regression to assess determinants of participants' perspectives towards the term "cancer survivor." Qualitative responses were analyzed using content analysis. RESULTS: In all, 539 participants with CRC completed the survey, including 122 (22.6%) undergoing treatment and 417 (77.4%) who completed treatment. Participants who had completed treatment were four times more likely to relate with term "cancer survivor" compared to those undergoing treatment (adjusted odds ratio (aOR), 4.0; 95% confidence interval (CI) 2.4 to 6.7). Participants diagnosed with CRC ≥50 years were also more likely to relate with the term compared to those diagnosed < 50 years (aOR, 1.88; 95% (CI) 1.2 to 3.0). Analysis of open-ended survey responses revealed aversion, discomfort, indifference, reluctance, and acceptance as themes which capture the spectrum of feelings towards the term "cancer survivor." CONCLUSION: Perspectives of individuals with CRC towards the term "cancer survivor" differ according to treatment status and age of diagnosis. IMPLICATION OF CANCER SURVIVORS: Our study amplifies voices of the CRC community towards reconsideration of the term "cancer survivor", considering the implications of treatment status and age in highlighting the importance of language.

Virtual Oncology Appointments during the Initial Wave of the COVID-19 Pandemic: An International Survey of Patient Perspectives.

There has been rapid implementation of virtual oncology appointments in response to the COVID-19 pandemic, particularly in its first wave. Our objective was to assess patterns and perspectives towards virtual oncology appointments during the pandemic among patients with cancer undergoing active treatment. We conducted an international Internet-based cross-sectional survey. Participants were eligible if they (1) were ≥18 years of age; (2) had been diagnosed with cancer (3) were currently undergoing cancer treatment, and (4) spoke English or French. Between 23 April 2020 and 9 June 2020, 381 individuals accessed the survey, with 212 actively undergoing treatment for cancer, including 27% with colorectal, 21% with breast, 7% with prostate and 7% with lung cancer. A total of 52% of respondents were from Canada and 35% were from the United States. Many participants (129, 62%) indicated having had a virtual oncology appointment during the COVID-19 pandemic and most were satisfied with their experience (83%). We found older participants (≥50 years; adjusted OR 0.22, 95% CI 0.06 to 0.85 compared to <50 years) and those with shortest duration of treatment (≤3 months; adjusted OR 0.06; 95% CI 0 to 0.69 compared to >12 months) were less likely to be satisfied with virtual oncology appointments. Virtual health platforms used differed across countries with higher telephone use in Canada (87%) and other countries (86%) as compared to the United States (54%; p-value < 0.05), where there was higher use of video conferencing. Altogether, our findings demonstrate favorable patient perspectives towards virtual oncology appointments experienced during the first wave of the COVID-19 pandemic.

Assessing how health information needs of individuals with colorectal cancer are met across the care continuum: an international cross-sectional survey.

BACKGROUND: Studies 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. METHODS: We 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. RESULTS: We 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). CONCLUSIONS: Our study provides a comprehensive assessment of health information needs among individuals with CRC across the care continuum.

Health information seeking behaviors among individuals with young-onset and average-onset colorectal cancer: an international cross-sectional survey.

PURPOSE: Our objective was to evaluate health information seeking behaviors in yCRC (young onset colorectal cancer, diagnosed ≤ 50 years) and aCRC (average-age onset colorectal cancer, diagnosed ≥ 50 years). METHODS: We administered an international, Internet-based survey to ask individuals diagnosed with CRC how they seek health information, including sources sought and utilization behaviors. We also asked participants their preferences for digital technologies. RESULTS: In total 1125 individuals including 455 with yCRC (68.6% female) and 670 with aCRC (53.5% female) participated. There were similar frequencies of seeking among participants with yCRC and aCRC across all sources except for the Internet. Healthcare providers were the most frequently sought source with similar proportions of participants indicating their response as "always" (yCRC, 43.7% vs. aCRC, 43.2%, p = 0.91). We also observed differences in utilization behaviors with more participants with yCRC using the Internet first when seeking information (yCRC 31.6% vs. aCRC 24.3%, p < 0.05) and those with aCRC seeking healthcare providers first (aCRC 61.9% vs. yCRC 45.5%, p < 0.05). With respect to digital technologies, we found a higher proportion of yCRC participants owning smartphones and indicating use of apps related to health/wellness and cancer. CONCLUSION: Individuals with yCRC and aCRC similarly sought the same resources for health information on CRC. However, they differed with respect to utilization behaviors, particularly a greater reliance on digital technologies among individuals with yCRC. These have implications for informing age-specific resources and information to support patients.

Trends in the epidemiology of young-onset colorectal cancer: a worldwide systematic review.

BACKGROUND: Recent data suggest that the risk of young-onset colorectal cancer (yCRC), in adults less than 50 years of age, is increasing. To confirm findings and identify contemporary trends worldwide, we conducted a systematic review of studies examining population-level trends in yCRC epidemiology. METHODS: We searched MEDLINE (1946-2018), EMBASE (1974-2018), CINAHL (1982-2018), and Cochrane Database of Systematic Reviews (2005-2018) for studies that used an epidemiologic design, assessed trends in yCRC incidence or prevalence, and published in English. Extracted information included country, age cut-off for yCRC, and reported trends in incidence or prevalence (e.g. annual percent change [APC]). We pooled similarly reported trend estimates using random effects models. RESULTS: Our search yielded 8695 articles and after applying our inclusion criteria, we identified 40 studies from 12 countries across five continents. One study assessed yCRC prevalence trends reporting an APCp of + 2.6 and + 1.8 among 20-39 and 40-49 year olds, respectively. 39 studies assessed trends in yCRC incidence but with substantial variability in reporting. Meta-analysis of the most commonly reported trend estimate yielded a pooled overall APCi of + 1.33 (95% CI, 0.97 to 1.68; p < 0.0001) that is largely driven by findings from North America and Australia. Also contributing to these trends is the increasing risk of rectal cancer as among 14 studies assessing cancer site, nine showed an increased risk of rectal cancer in adults less than 50 years with APCi up to + 4.03 (p < 0.001). CONCLUSIONS: Our systematic review highlights increasing yCRC risk in North America and Australia driven by rising rectal cancers in younger adults over the past two decades.

A Missing Link: HIV-/AIDS-Related mHealth Interventions for Health Workers in Low- and Middle-Income Countries.

PURPOSE OF REVIEW: Through a review of the peer-reviewed and gray literature on HIV mobile health (mHealth) tools for health workers and in-depth interviews with mHealth leaders in the field, we provide a synthesis of current work and propose mHealth research priorities for HIV prevention, care, and treatment. RECENT FINDINGS: Significant investment in implementation research and bringing together researchers capable of identifying drivers of successful implementation and industry leaders capable of bringing efficacious tools to scale are needed to move this area forward. Effective and appropriate technologies to support health systems in the prevention and treatment of HIV/AIDS in low- and middle-income countries are needed to improve the efficiency and quality of health service delivery and ultimately improve health outcomes. Although a growing number of HIV mHealth tools have been developed to support health workers, few of these tools have been rigorously evaluated and even fewer have been brought to scale.

Addressing barriers to exclusive breast-feeding in low- and middle-income countries: a systematic review and programmatic implications.

OBJECTIVE: Despite numerous global initiatives on breast-feeding, trend data show exclusive breast-feeding (EBF) rates have stagnated over the last two decades. The purpose of the present systematic review was to determine barriers to exclusive breast-feeding in twenty-five low- and middle-income countries and discuss implications for programmes. DESIGN: A search of Scopus, MEDLINE, CINAHL and PsychINFO was conducted to retrieve studies from January 2000 to October 2015. Using inclusion criteria, we selected both qualitative and quantitative studies that described barriers to EBF. SETTING: Low- and middle-income countries. SUBJECTS: Following application of systematic review criteria, forty-eight articles from fourteen countries were included in the review. RESULTS: Sixteen barriers to EBF were identified in the review. There is moderate evidence of a negative association between maternal employment and EBF practices. Studies that examined EBF barriers at childbirth and the initial 24 h post-delivery found strong evidence that caesarean section can impede EBF. There is moderate evidence for early initiation of breast-feeding and likelihood of practising EBF. Breast-feeding problems were commonly reported from cross-sectional or observational studies. Counselling on EBF and the presence of family and/or community support have demonstrated improvements in EBF. CONCLUSIONS: Improving the counselling skills of health workers to address breast-feeding problems and increasing community support for breast-feeding are critical components of infant and young child feeding programming, which will aid in attaining the 2025 World Health Assembly EBF targets. Legislation and regulations on marketing of breast-milk substitutes, paid maternity leave and breast-feeding breaks for working mothers require attention in low- and middle-income countries.