Body map stories from Colombia: experiences of people affected by leprosy and the influence of peers during diagnosis and treatment.

INTRODUCTION: Almost one third of people affected by leprosy in Colombia suffer from disability, which often results from delayed diagnosis and treatment. We aimed to explore the experience of people affected by leprosy during the process of diagnosis and treatment and if and how this experience was influenced by peers. METHODS: A qualitative study using body map stories was conducted from October 2019 to February 2020 in Colombia. Adult people affected by leprosy were recruited through patient associations in different cities. We conducted three sessions with an average duration of 2-3 h per participant, during which the participants created a painted map of their body and chose symbols to represent their experience, while being engaged in an informal interview. The sessions were audio recorded, transcribed verbatim and analyzed thematically by an interdisciplinary team, consisting of physicians, social workers and a person affected by leprosy. RESULTS: The 17 study participants (11 female) were aged 20 to 70 years. Leprosy-related manifestations ranged from no to advanced disability. Some participants were active members of associations for people affected by leprosy. Three main themes were identified during analysis: (1) A long pathway to diagnosis, (2) Therapy as a double-edged sword and (3) The influence of other people affected by leprosy. The participants described an often years-long process until being diagnosed, which was marked by insecurities, repeated misdiagnosis, and worsening mental and physical health. Delayed diagnosis was related to late health care seeking, but also to inadequate health communication, lack of leprosy-related knowledge and negligence among health care workers. A high desire to cure motivated the participants to take their medication rigorously, despite the high treatment burden. Support from peers, either within the own social environment or provided from associations, contributed to a faster diagnosis and increased therapy adherence. Peers helped to recognize the symptoms, urged patients to seek care, recommended physicians with leprosy-related knowledge and provided a realistic example of both disease severity and curability. CONCLUSION: People affected by leprosy experience a significant burden during the process of diagnosis and treatment. Involving well-trained peers could foster early diagnosis, treatment compliance and prevention of disability.

Delayed Presentation, Diagnosis, and Treatment of Breast Cancer Among Chinese Women: An Integrative Literature Review.

BACKGROUND: Delays before treatment initiation increase the likelihood of later-stage diagnosis of breast cancer and reduce survival. Among Chinese women living in mainland China, Hong Kong, and Taiwan, the amount of time lost in delay and the factors influencing it are unclear. OBJECTIVE: This integrative review aimed to characterize delay intervals among Chinese women, identify factors contributing to delay, and develop a conceptual model of these factors. METHODS: Using Whittemore and Knafl's methodology for integrative reviews, PubMed, CINAHL, Web of Science, SCOPUS, PsycINFO, and China National Knowledge Infrastructure were searched for primary research articles. For 15 selected studies, quality evaluation was performed employing the Crowe Critical Appraisal Tool. A narrative synthesis was developed to summarize and explain the findings. RESULTS: Total delay intervals (from first discovery of breast symptoms to treatment initiation) exceeded 3 months for 50.2% to 52% of breast cancer patients. The greatest delay occurred between symptom discovery and first presentation (patient intervals). Factors affecting delay in presentation, diagnosis, and treatment included symptom appraisal, Chinese cultural factors, knowledge of breast cancer symptoms and screening, health history, personality, social and healthcare factors, and background factors. CONCLUSIONS: Half of Chinese breast cancer patients delayed long enough to lower their chances of survival. Our review sheds light on how the reviewed factors contribute to delay and their unique influences in this population. IMPLICATIONS FOR PRACTICE: Factors identified can inform nursing interventions that raise breast cancer awareness and promote timely diagnosis and treatment in Chinese women.

Delay in the diagnosis and treatment of breast cancer in Vietnam.

BACKGROUND: Delays in diagnosis and treatment from first noticeable breast cancer symptoms are associated with poor outcomes. Understanding the reasons and barriers for patients' delay in seeking medical care is critical to mitigating the problem. METHODS: In-person surveys were conducted among 462 women, aged 18-79, with incident breast cancer cases, recruited from two cancer hospitals in North Vietnam. Delay, defined as the time interval between symptom recognition to the diagnosis and initiation of treatment equal to or exceeding 3 months, was categorized as follows: no delay (<3 months), moderate delay (3-8 months), and serious delay (≥9 months). Multivariable multinomial logistic regression was applied in data analyses. RESULTS: Over one-quarter patients (31.5%) experienced moderate delays, and close to one-fifth (17.5%) experienced serious delays. Adjusted odds ratios and 95% confidence intervals for moderate and serious delays were 5.60 (3.00-10.47) and 4.25 (2.05-8.85) for financial and physical barriers, respectively. Moderate delay was positively associated with psychological barriers (5.55 [1.75-17.57]) and lack of proper knowledge (3.15 [1.47-6.74]). The associations of barriers with delays in diagnosis and treatment appeared stronger among women living in rural areas. A lack of proper knowledge was significantly associated with delay among young women (<45 years old) and those with high incomes, while psychological barriers were significantly associated with delay among older women (≥45 years old). CONCLUSION: Delays in diagnosis and treatment are common among Vietnamese breast cancer patients and are affected by several noted barriers. Proper policy needs to be developed to address this public health issue.

The Impact of the COVID-19 Pandemic on Cardiac Procedure Wait List Mortality in Ontario, Canada.

BACKGROUND: The novel SARS-CoV-2 (COVID-19) pandemic has dramatically altered the delivery of healthcare services, resulting in significant referral pattern changes, delayed presentations, and procedural delays. Our objective was to determine the effect of the COVID-19 pandemic on all-cause mortality in patients awaiting commonly performed cardiac procedures. METHODS: Clinical and administrative data sets were linked to identify all adults referred for: (1) percutaneous coronary intervention; (2) coronary artery bypass grafting; (3) valve surgery; and (4) transcatheter aortic valve implantation, from January 2014 to September 2020 in Ontario, Canada. Piece-wise regression models were used to determine the effect of the COVID-19 pandemic on referrals and procedural volume. Multivariable Cox proportional hazards models were used to determine the effect of the pandemic on waitlist mortality for the 4 procedures. RESULTS: We included 584,341 patients who were first-time referrals for 1 of the 4 procedures, of whom 37,718 (6.4%) were referred during the pandemic. The pandemic period was associated with a significant decline in the number of referrals and procedures completed compared with the prepandemic period. Referral during the pandemic period was a significant predictor for increased all-cause mortality for the percutaneous coronary intervention (hazard ratio, 1.83; 95% confidence interval, 1.47-2.27) and coronary artery bypass grafting (hazard ratio, 1.96; 95% confidence interval, 1.28-3.01), but not for surgical valve or transcatheter aortic valve implantation referrals. Procedural wait times were shorter during the pandemic period compared with the prepandemic period. CONCLUSIONS: There was a significant decrease in referrals and procedures completed for cardiac procedures during the pandemic period. Referral during the pandemic was associated with increased all-cause mortality while awaiting coronary revascularization.

Pathways to diagnosis of pediatric TB patients: A mixed methods study from India.

BACKGROUND: A significant proportion of pediatric tuberculosis (TB) patients go unnotified due to the challenges in diagnosis of TB among children. The experiences of this vulnerable group while going through the TB care cascade remain largely undocumented. The aim of this study was to explore the experiences of pediatric TB patients and families along the pathway to TB diagnosis and appropriate treatment in four cities of India. METHODS: The study used a mixed methods, single phased, embedded design. The primary qualitative and secondary quantitative data were collected simultaneously by interviewing families of 100 randomly selected Xpert MTB/RIF positive pediatric TB patients, under the pediatric TB project, in 4 Indian cities using a semi-structured questionnaire. The qualitative component was analyzed to deduce patterns and themes on the patient and family experiences. Descriptive statistics were used to quantify various events along the TB care pathway including various delays (patient, diagnosis and total) and number of providers visited by patients during the diagnostic process. RESULTS: The median patient, diagnostic and total delays were 3 (IQR: 2,5), 39 (IQR: 23, 91) and 43 days (IQR: 28.5, 98.5), respectively. Patients visited a median of 3 (IQR: 2,4) providers before accessing Xpert MTB/RIF testing. On an average, 68.4% of physicians ordered any test most of them being irrelevant for TB diagnosis. Qualitative data showed considerable suffering for children and their families before and after TB diagnosis including serious concerns of stigma, disruption in education and social life and recurrence of the disease. CONCLUSION: Our study highlights the significant physical and social distress that the children with TB and their families undergo along the TB care pathway. It also shows diagnostic delay in excess of a month during which multiple providers were met and the patients underwent several diagnostic tests, most of them being inappropriate. Efforts to make Xpert MTB/RIF testing more accessible and part of physicians' toolkit will be of considerable value to ease the complexity of TB diagnosis in children. In addition, communication strategy needs to be developed and implemented to generate awareness among general population around pediatric TB and its management.

Limitations and perceived delays for diagnosis and staging of lung cancer in Portugal: A nationwide survey analysis.

BACKGROUND: We aimed to identify the perception of physicians on the limitations and delays for diagnosing, staging and treatment of lung cancer in Portugal. METHODS: Portuguese physicians were invited to participate an electronic survey (Feb-Apr-2020). Descriptive statistical analyses were performed, with categorical variables reported as absolute and relative frequencies, and continuous variables with non-normal distribution as median and interquartile range (IQR). The association between categorical variables was assessed through Pearson's chi-square test. Mann-Whitney test was used to compare categorical and continuous variables (Stata v.15.0). RESULTS: Sixty-one physicians participated in the study (45 pulmonologists, 16 oncologists), with n = 26 exclusively assisting lung cancer patients. Most experts work in public hospitals (90.16%) in Lisbon (36.07%). During the last semester of 2019, responders performed a median of 85 (IQR 55-140) diagnoses of lung cancer. Factors preventing faster referral to the specialty included poor articulation between services (60.0%) and patients low economic/cultural level (44.26%). Obtaining National Drugs Authority authorization was one of the main reasons (75.41%) for delaying the begin of treatment. The cumulative lag-time from patients' admission until treatment ranged from 42-61 days. Experts believe that the time to diagnosis could be optimized in around 11.05 days [IQR 9.61-12.50]. Most physicians (88.52%) started treatment before biomarkers results motivated by performance status deterioration (65.57%) or high tumor burden (52.46%). Clinicians exclusively assisting lung cancer cases reported fewer delays for obtaining authorization for biomarkers analysis (p = 0.023). Higher waiting times for surgery (p = 0.001), radiotherapy (p = 0.004), immunotherapy (p = 0.003) were reported by professionals from public hospitals. CONCLUSIONS: Physicians believe that is possible to reduce delays in all stages of lung cancer diagnosis with further efforts from multidisciplinary teams and hospital administration.

Facilitators of and obstacles to consultation in patients with advanced basal cell carcinoma: a French pilot study.

Basal cell carcinoma is the most common skin cancer for which surgery is usually the unique and definitive treatment. Advanced basal cell carcinoma is not eligible to surgery when underlying structures are destroyed. Delayed consultation is the principal cause of advanced basal cell carcinoma. It is questionable why some patients seek care only when the tumour is advanced. The objective of this study was to identify the psychosocial factors involved in delayed consultation. We used a qualitative approach, conducting semi-structured interviews with advanced basal cell carcinoma patients and the healthcare staff of a dermatology unit to explore why some patients consult only when basal cell carcinoma is advanced. We then put our findings into perspective and created a logical model for change. We interviewed 14 patients and 12 healthcare staff. The first lesion was associated with banalization. Then, denial and fear of diagnosis or treatment were post common. Finally, the advanced basal cell carcinoma's symptoms, along with social pressure, created the intention to seek medical help and improved disease awareness. We developed a logical model that summarizes these findings. In this pilot study, we modelled factors that delayed consultation. This will aid future research and targeted interventions reducing delay, in particular by improving knowledge and by using social pressure as facilitators. Trial registration: NCT04124796.

The Missing Uterus, the Missed Diagnosis, and the Missing Care. Mayer-Rokitansky-Küster-Hauser Syndrome in the Lives of Women in Malaysia.

STUDY OBJECTIVE: To explore the effect of the diagnosis of Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome on affected Malaysian women. DESIGN: Qualitative study with a quantitative component. SETTING: Pediatric and adolescent gynecology unit at Universiti Kebangsaan Malaysia Medical Centre, Malaysia. PARTICIPANTS: Twelve women with MRKH. INTERVENTIONS: Face-to-face interview and short questionnaire. MAIN OUTCOME MEASURES: Thematic analysis was used to understand participants' experiences. RESULTS: There were 7 themes identified: (1) delayed diagnoses; (2) doctors' roles and attitudes; (3) gender identity; (4) family and society's response; (5) reaction toward infertility; (6) managing sexual intimacy; and (7) coping mechanisms. Several participants consulted their physicians regarding their primary amenorrhea at an opportunistic setting. When they were referred to the gynecologists, they were dismayed at the lack of information given. The term, "MRKH" plays an important role to ease information-seeking. Participants felt that the doctors were insensitive toward them. Mental illness is a significant complication of MRKH. All participants acknowledged that infertility was the hardest part of the condition. The importance of blood lineage affects their outlook on childbearing options. Some were afraid of sexual intimacy and worried that they would not be able to satisfy their partners. Participants gained support and bonded with their counterparts in the MRKH support group. CONCLUSION: A multidisciplinary approach including medical, psychological, and social support is essential for the management of MRKH. Adequate information and sexual education plays the utmost importance in preventing social-related complications of MRKH.

Impact of the COVID-19 Pandemic on Excess Perinatal Mortality and Morbidity in Israel.

OBJECTIVE: The 2020 COVID-19 pandemic has been associated with excess mortality and morbidity in adults and teenagers over 14 years of age, but there is still limited evidence on the direct and indirect impact of the pandemic on pregnancy. We aimed to evaluate the effect of the first wave of the COVID-19 pandemic on obstetrical emergency attendance in a low-risk population and the corresponding perinatal outcomes. STUDY DESIGN: This is a single center retrospective cohort study of all singleton births between February 21 and April 30. Prenatal emergency labor ward admission numbers and obstetric outcomes during the peak of the first COVID-19 pandemic of 2020 in Israel were compared with the combined corresponding periods for the years 2017 to 2019. RESULTS: During the 2020 COVID-19 pandemic, the mean number of prenatal emergency labor ward admissions was lower, both by daily count and per woman, in comparison to the combined matching periods in 2017, 2018, and 2019 (48.6 ± 12.2 vs. 57.8 ± 14.4, p < 0.0001 and 1.74 ± 1.1 vs. 1.92 ± 1.2, p < 0.0001, respectively). A significantly (p = 0.0370) higher rate of stillbirth was noted in the study group (0.4%) compared with the control group (0.1%). All study group patients were negative for COVID-19. Gestational age at delivery, rates of premature delivery at <28, 34, and 37 weeks, pregnancy complications, postdate delivery at >40 and 41 weeks, mode of delivery, and numbers of emergency cesarean deliveries were similar in both groups. There was no difference in the intrapartum fetal death rate between the groups. CONCLUSION: The COVID-19 pandemic stay-at-home policy combined with patient fear of contracting the disease in hospital could explain the associated higher rate of stillbirth. This collateral perinatal damage follows a decreased in prenatal emergency labor ward admissions during the first wave of COVID-19 in Israel. KEY POINTS: · Less obstetrical ER attendance is observed during the pandemic.. · There is a parallel increase in stillbirth rate.. · Stillbirth cases tested negative for COVID-19.. · Lockdown and pandemic panic are possible causes..

Waiting for a diagnosis in Rubinstein-Taybi: The journey from "ignorance is bliss" to the value of "a label".

The journey to receiving a diagnosis for rare genetic disease can be long and emotionally impactful. This study describes parental experiences of receiving their child's diagnosis of Rubinstein-Taybi syndrome (RTS), a rare genetic condition characterized by growth and developmental delay together with dysmorphic features. Parents from the RTS Australia support group participated in qualitative, semi-structured phone interviews, which were transcribed verbatim and thematically analyzed. Questions focused on psychosocial challenges and benefits pre and post-diagnosis. Ten mothers and three fathers participated, with the mean age of diagnosis being 8 months. Parents reported positive psychological effects from a slight delay in diagnosis, and negative effects from an extended diagnostic delay, suggesting the ideal time for a parent to receive a diagnosis lies in the post attachment stage, prior to the development of significant parental concerns. This stage would vary depending on condition severity. Parents desired a diagnosis to reduce uncertainty; however, uncertainty remained post diagnosis, and shifted its focus from broadly encompassing etiology and prognosis, to specifically focusing on concerns regarding severity within the spectrum. Perceived benefits of a diagnosis mainly centered on the provision of a label. Parents articulated that a label increased social acceptance, enhanced coping, promoted communication, and improved access to medical, financial, and support services. This study provides insights into the experience of families prior to and following receipt of a diagnosis. It also highlights the possibility of an optimal time window to receive a diagnosis; in which bonding is maximized and parental distress is minimized.

Women's delay in presenting breast cancer symptoms in Kurdistan-Iraq.

BACKGROUND: Women in developing countries usually delay in presenting their symptoms as a part of the early diagnosis program. This study was conducted for analyzing the reason of patient's delay and its relation with socioeconomic and health conditions, knowledge, and women's belief about breast cancer (BC). METHODOLOGY: This study used a cross-sectional design in the early detection center in Kurdistan (North Iraq). Women were interviewed about socioeconomic and health background, knowledge, and belief about BC. RESULTS: The median of patient delay in the BC symptomatic women in this study was higher (30 days) as compared with developed countries. Patient delay was longer in women who were widows, had a barely self-perceived economic status, and had chronic diseases. There was a significant relationship of patient delay with women's health motivation and perceived barrier to seeking medical care. CONCLUSIONS: Health promotion program should emphasize on the women's motivation about early diagnosis and seeking to early detection.

Why women with breast cancer presented late to health care facility in North-west Ethiopia? A qualitative study.

BACKGROUND: Although early diagnosis is a key determinant factor for breast cancer survival, delay in presentation and advanced stage diagnosis are common challenges in low and middle income countries including Ethiopia. Long patient delays in presentation to health facility and advanced stage diagnosis are common features in breast cancer care in Ethiopia but the reasons for patient delays are not well explored in the country. Therefore we aimed to explore the reasons for patient delay in seeking early medical care for breast cancer in North-west Ethiopia. METHODS: A qualitative study was conducted from November to December 2019 using in-depth interviews from newly diagnosed breast cancer patients in the two comprehensive specialized hospitals in North West Ethiopia. Verbal informed consent was taken from each participant before interviews. A thematic content analysis was performed using Open Code software version 4.02. RESULTS: Lack of knowledge and awareness about breast cancer, cultural and religious beliefs, economic hardships, lack of health care and transportation access, fear of surgical procedures and lack of trusts on medical care were the major reasons for late presentation of breast cancer identified from the patient's narratives. CONCLUSIONS: The reasons for late presentation of patients to seek early medical care for breast cancer had multidimensional nature in Northwest Ethiopia. Health education and promotion programs about breast cancer should be designed to increase public awareness to facilitate early detection of cases before advancement on the existing health care delivery system.

Patient factors related to pre-treatment delay of pulmonary tuberculosis: A retrospective cohort study in Bangladesh.

BACKGROUND: Burden of tuberculosis (TB) is still high in Bangladesh. Pre-treatment delay is a hindrance in reducing this burden by early diagnosis and prompt treatment of TB. The study was conducted to identify the patient factors related to pre-treatment delay of pulmonary TB. METHODS: This retrospective cohort study was performed during January to June 2018 in a cohort of 240 consecutively enrolled; newly detected adult pulmonary TB (PTB) patients initiated anti-TB therapy during the study period. Two DOTS were selected randomly using cluster sampling and all the PTB patients enrolled in the DOTS centres formed the study population. Informed written consent was obtained from the patients, prior to data collection. Data were collected by face-to-face interview and reviewing medical records using a semi-structured questionnaire and checklist respectively. RESULTS: Age of the patients was associated with pre-treatment delay of TB (p < 0.05) with predominance in elderly (75.0%). Delay in care seeking was associated with inability to make decision (RR = 1.84; AR: 35.84%) and awareness of patients (RR = 0.33; AR = -40.0%). Delay in diagnosis was associated with economic problem (RR: 1.63; AR: 28.85%); work barrier (RR: 1.75; AR: 35.03%); inability to make decision (RR: 1.93; AR: 40.65%); delayed investigation (RR: 2.88; AR: 56.17%); others' assistance (RR: 1.77; AR: 28.53%); and symptomatic treatment (RR: 6.43; AR: 65.14%). Delay in treatment initiation was associated with repeated investigations (RR = 1.52; AR: 23.29%) and smear positivity (RR: 0.64; AR: 23.11%). Awareness of patients regarding symptoms and smear positivity were revealed as protective factors for pre-treatment delay of TB. CONCLUSION: Delay in care seeking, diagnosis, and treatment initiation contribute substantially to pre-treatment delay of PTB. Considerable reduction in pre-treatment delay may be achieved through changes in awareness of patients and ensuring early diagnosis and prompt treatment of PTB under DOTS programme.