Measuring and monitoring equity in access to deceased donor kidney transplantation.

The Organ Procurement and Transplantation Network monitors progress toward strategic goals such as increasing the number of transplants and improving waitlisted patient, living donor, and transplant recipient outcomes. However, a methodology for assessing system performance in providing equity in access to transplants was lacking. We present a novel approach for quantifying the degree of disparity in access to deceased donor kidney transplants among waitlisted patients and determine which factors are most associated with disparities. A Poisson rate regression model was built for each of 29 quarterly, period-prevalent cohorts (January 1, 2010-March 31, 2017; 5 years pre-kidney allocation system [KAS], 2 years post-KAS) of active kidney waiting list registrations. Inequity was quantified as the outlier-robust standard deviation (SDw ) of predicted transplant rates (log scale) among registrations, after "discounting" for intentional, policy-induced disparities (eg, pediatric priority) by holding such factors constant. The overall SDw declined by 40% after KAS implementation, suggesting substantially increased equity. Risk-adjusted, factor-specific disparities were measured with the SDw after holding all other factors constant. Disparities associated with calculated panel-reactive antibodies decreased sharply. Donor service area was the factor most associated with access disparities post-KAS. This methodology will help the transplant community evaluate tradeoffs between equity and utility-centric goals when considering new policies and help monitor equity in access as policies change.

OPTN/SRTR 2015 Annual Data Report: Kidney.

The first full year of data after implementation of the new kidney allocation system reveals an increase in deceased donor kidney transplants among black candidates and those with calculated panel-reactive antibodies 98%-100%, but a decrease among candidates aged 65 years or older. Data from 2015 also demonstrate ongoing positive trends in graft and patient survival for both deceased and living donor kidney transplants, but the challenges of a limited supply of kidneys in the setting of increasing demand remain evident. While the total number of patients on the waiting list decreased for the first time in a decade, this was due to a combination of a decrease in the number of candidates added to the list and an increase in the number of candidates removed from the list due to deteriorating medical condition, as well as an increase in total transplants. Deaths on the waiting list remained flat, but this was likely because of an increasing trend toward removing inactive candidates too sick to undergo transplant.

The Impact of the New Kidney Allocation System on Prior Living Kidney Donors' Access to Deceased Donor Kidney Transplants: An Early Look.

This study investigated the early effects of the new kidney allocation system (KAS) on the access of prior living kidney donors (PLDs) to deceased donor kidney transplants. Using data from the Organ Procurement and Transplantation Network, we compared prevalent and incident cohorts of PLDs in the 1-year periods before and after KAS implementation (pre-KAS group: December 4, 2013, to December 3, 2014, n = 50 [newly listed PLDs]; post-KAS group: December 4, 2014, to December 3, 2015, n = 39). We assessed transplant rates per active patient-year, waiting times, and Kidney Donor Profile Index (KDPI) of transplanted kidneys. Transplant rates were not statistically different before and after KAS implementation for either prevalent (2.37 vs. 2.29, relative risk [RR] 0.96; 95% confidence interval [CI] 0.62-1.49) or incident (4.76 vs. 4.36, RR 0.92; 95% CI 0.53-1.60) candidates. Median waiting time (MWT) to deceased donor kidney transplant for prevalent PLDs in the post-KAS cohort was 102.6 days compared with 82.3 days in the pre-KAS cohort (p = 0.98). The median KDPI for PLD recipients was 31% with KAS versus 23% before KAS (p = 0.02). Despite a sharp decrease in the MWT for highly prioritized candidates with calculated panel reactive antibodies of 98-100% (from >7000 to 1164 days), PLDs still had much shorter waiting times (MWT 102.6 days). The new system continues to provide quick access to high-quality organs for PLDs.

Quantifying accessibility and use of improved sanitation: towards a comprehensive indicator of the need for sanitation interventions.

To prevent diseases associated with inadequate sanitation and poor hygiene, people needing latrines and behavioural interventions must be identified. We compared two indicators that could be used to identify those people. Indicator 1 of household latrine coverage was a simple Yes/No response to the question "Does your household have a latrine?" Indicator 2 was more comprehensive, combining questions about defecation behaviour with observations of latrine conditions. Using a standardized procedure and questionnaire, trained research assistants collected data from 6,599 residents of 16 rural villages in Indonesia. Indicator 1 identified 30.3% as not having a household latrine, while Indicator 2 identified 56.0% as using unimproved sanitation. Indicator 2 thus identified an additional 1,710 people who were missed by Indicator 1. Those 1,710 people were of lower socioeconomic status (p < 0.001), and a smaller percentage practiced appropriate hand-washing (p < 0.02). These results show how a good indicator of need for sanitation and hygiene interventions can combine evidences of both access and use, from self-reports and objective observation. Such an indicator can inform decisions about sanitation-related interventions and about scaling deworming programmes up or down. Further, a comprehensive and locally relevant indicator allows improved targeting to those most in need of a hygiene-behaviour intervention.

The OPTN Deceased Donor Potential Study: Implications for Policy and Practice.

The Organ Procurement and Transplantation Network (OPTN) Deceased Donor Potential Study, funded by the Health Resources and Services Administration, characterized the current pool of potential deceased donors and estimated changes through 2020. The goal was to inform policy development and suggest practice changes designed to increase the number of donors and organ transplants. Donor estimates used filtering methodologies applied to datasets from the OPTN, the National Center for Health Statistics, and the Agency for Healthcare Research and Quality and used these estimates with the number of actual donors to estimate the potential donor pool through 2020. Projected growth of the donor pool was 0.5% per year through 2020. Potential donor estimates suggested unrealized donor potential across all demographic groups, with the most significant unrealized potential (70%) in the 50-75-year-old age group and potential Donation after Circulatory Death (DCD) donors. Actual transplants that may be realized from potential donors in these categories are constrained by confounding medical comorbidities not identified in administrative databases and by limiting utilization practices for organs from DCD donors. Policy, regulatory, and practice changes encouraging organ procurement and transplantation of a broader population of potential donors may be required to increase transplant numbers in the United States.

OPTN/SRTR 2013 Annual Data Report: kidney.

A new kidney allocation system, expected to be implemented in late 2014, will characterize donors on a percent scale (0%-100%) using the kidney donor profile index (KDPI). The 20% of deceased donor kidneys with the greatest expected posttransplant longevity will be allocated first to the 20% of candidates with the best expected posttransplant survival; kidneys that are not accepted will then be offered to remaining 80% of candidates. Waiting time will start at the time of maintenance dialysis initiation (even if before listing) or at the time of listing with an estimated glomerular filtration rate of 20 mL/min/1.73 m(2) or less. Under the current system, the number of candidates on the waiting list continues to increase, as each year more candidates are added than are removed. Median waiting times for adults increased from 3 years in 2003 to more than 4.5 years in 2009. Donation rates have not increased. Short-term outcomes continue to improve; death-censored graft survival at 90 days posttransplant was 97% or higher for deceased donor transplants and over 99% for living donor transplants. In 2013, 883 pediatric candidates were added to the waiting list; 65.8% of pediatric candidates on the list in 2013 underwent deceased donor transplant. Five-year graft survival was highest for living donor recipients aged younger than 11 years (89%) and lowest for deceased donor recipients aged 11 to 17 years (68%).

OPTN/SRTR 2012 Annual Data Report: kidney.

For most end-stage renal disease patients, successful kidney transplant provides substantially longer survival and better quality of life than dialysis, and preemptive transplant is associated with better outcomes than transplants occurring after dialysis initiation. However, kidney transplant numbers in the us have not changed for a decade. Since 2004, the total number of candidates on the waiting list has increased annually. Median time to transplant for wait-listed adult patients increased from 2.7 years in 1998 to 4.2 years in 2008. The discard rate of deceased donor kidneys has also increased, and the annual number of living donor transplants has decreased. The number of pediatric transplants peaked at 899 in 2005, and has remained steady at approximately 750 over the past 3 years; 40.9% of pediatric candidates undergo transplant within 1 year of wait-listing. Graft survival continues to improve for both adult and pediatric recipients. Kidney transplant is one of the most cost-effective surgical interventions; however, average reimbursement for recipients with primary Medicare coverage from transplant through 1 year posttransplant was comparable to the 1-year cost of care for a dialysis patient. Rates of rehospitalization are high in the first year posttransplant; annual costs after the first year are lower.

Healthcare worker's perceptions of barriers to care by immigrant women with postpartum depression: an exploratory qualitative study.

OBJECTIVE: We interviewed healthcare workers working in Toronto, Canada, regarding their experience of providing care to recent immigrant women suffering from postpartum depression. The objective was two-fold: 1) to identify potential barriers to care that recent immigrant women may encounter as perceived by healthcare workers; and 2) to identify challenges healthcare workers felt that they faced as providers of care to this population. METHODS: Qualitative semi-structured interviews were conducted with 16 key informants from various disciplines employed by healthcare agencies providing care to postpartum immigrant women in Toronto. Constant comparative analysis was used to analyze the data. RESULTS: Two main categories of barriers to care for recent immigrant women were identified: 'practical barriers' and 'culturally determined barriers'. Practical barriers included knowing where and how to access services, and language difficulties. Cultural barriers included fear of stigma and lack of validation of depressive symptoms by family and society. The challenges experienced by healthcare providers working with this population were organized into two other categories: 'professional limitations', and 'social/cultural barriers'. 'Professional limitations' included fear of incompetence, language barriers, and inadequate assessment tools. 'Social/cultural barriers' included the experience of cultural uncertainty. CONCLUSIONS: The results suggest that not only are there important barriers to accessing postpartum care for recent immigrant women, but it can also be challenging for healthcare workers to deliver such needed care. Understanding some of these barriers and challenges from the perspective of healthcare providers is an important step to remedying gaps and obstacles in the service system.

Perceptions of primary healthcare services among people with physical disabilities - part 1: access issues.

BACKGROUND: Access to primary healthcare among people with physical disabilities has been a neglected research area in Canada. The authors sought to examine the extent of access to and satisfaction with primary healthcare services for people with physical disabilities living in Canada's largest metropolitan area -- the Toronto region. METHODS: An anonymous self-report questionnaire regarding access to and perceived quality of primary healthcare was mailed to a convenience sample of 1026 members of several disability organizations as well as persons discharged from a rehabilitation hospital within the past 2 years. For the 201 returned surveys (response rate = 20%), the authors evaluated the perceived extent of access to primary healthcare services as well as the level of satisfaction with the quality of these services. RESULTS: Among the respondents to the questionnaire, 17.4% reported having difficulty obtaining a family doctor's services and 8.0% reported having been refused medical treatment by a family doctor because of their disability. Respondents also reported difficulty in physically accessing their family doctor's office (32.3%), equipment (38.3%), and washroom (22.9%). Although 82.1% of respondents claimed they were very or somewhat satisfied with their family doctor's services, 19.4% felt they were receiving inadequate primary healthcare and 21.9% felt that their disability prevented them from receiving appropriate primary healthcare. DISCUSSION: Although people who experienced more difficulties may have been more likely to respond to this survey, a significant proportion of people with physical disabilities feel they are experiencing difficulty accessing adequate and appropriate primary healthcare services. Possible solutions to some of the identified access barriers and areas where further research may be required are described.

Perceptions of primary healthcare services among persons with physical disabilities - part 2: quality issues.

BACKGROUND: The ability of persons with disabilities to access quality primary care in Canada is not well documented. This article reports on the perceived quality of primary care received by persons with disabilities by looking at utilization of elements of the health maintenance examination, referrals, health promotion, healthcare provider role clarification, and satisfaction. METHODS: A sample of convenience was undertaken whereby an anonymous self-report questionnaire, which included the Short Form-36 Health Survey, was mailed to members of several Canadian disability organizations and persons discharged within the last 2 years from a rehabilitation hospital. The Statistical Package for the Social Sciences was used to analyze the data. RESULTS: A total of 201 individuals (20% response rate) completed and returned the surveys, 61.2% of whom were women. Some elements of the health maintenance examination, including Pap tests, mammogram referral, and measurement of blood pressure (BP), were not markedly different from population census data. Inquiry around health promotion was low, as 61.7% of our sample did not receive a functional assessment, 58.2% were not asked about emotions, and only 10% were asked about physical or sexual violence. Diet, exercise, smoking, pain, sleep, alcohol, sex, sexually transmitted diseases (STDs), and reproductive choices were discussed in varying degrees. INTERPRETATION: Among respondents in our survey, disabled women were able to access important screening tests. Health promotion services, however, were often not offered. The particular healthcare needs of disabled women and men -- eg, having a condition that may be progressive, being at increased risk of secondary disability and the added effects of aging -- may be addressed more effectively by including health promotion. It is proposed that functional assessment, emotional inquiry, and role clarification could improve the delivery of health promotion and the perceived quality of care received.

Decentralization and human resource management in the health sector: a case study (1996-1998) from Nampula province, Mozambique.

Despite political, cultural and geographical diversity, health care reforms implemented in many developing countries share a number of common features regarding management and structural issues. Decentralization of decision-making from the central authority to local and provincial levels is generally regarded in the literature to be an important way of achieving a more equitable distribution of health care and better management practices, aligned with local priorities and needs. However, in the absence of clear guidelines, continuous monitoring and an adequate supply of financial and human resources, decentralization processes are more likely to have a low impact on the process of health care reform and can, to a certain extent, provoke inequalities between regions in the same country. This qualitative study in Nampula province, Mozambique, was conducted to assess the impact of decentralization, through an analysis of the viewpoints of provincial health managers regarding their perceptions of the process, particularly with regard to the management of basic and elementary nurses. Secondary data from Nampula provincial reports and documents from the Mozambican Health Ministry were also reviewed and comparisons made with the experiences of other developing countries.

Long-term breast cancer survivors: confidentiality, disclosure, effects on work and insurance.

UNLABELLED: As more women are diagnosed with breast cancer, more will survive the illness from a few years to a lifetime. This study sought to determine the experience of Canadian breast cancer survivors with respect to the impact of cancer on confidentiality, work and insurance. METHOD: Women who had survived breast cancer without recurrence for at least 2 years completed a mail survey about the effect of their illness on confidentiality, disclosure, work and insurance. RESULTS: 378 (75.6%) women breast cancer survivors responded to the survey. Their mean age was 61.0+/-10.9 years, and 67.6% had been recurrence free for more than 5 years. The majority of women rated hospital staff, family doctors, family, friends, and support groups at the highest possible level of confidentiality. Over 70% of survivors disclosed their diagnosis to friends, children, siblings, and partners, while over 50% disclosed to work colleagues and supervisors. However, over 40% felt cancer had altered their priorities or progress at work, and 5% were afraid to change jobs in case they became ill again. There was a lack of knowledge about insurance but, of the types of insurance identified, life insurance (17.9%), extended health insurance (7.7%), and private disability insurance (4.4%) were reported to have been refused or offered only with higher premiums as a result of a past diagnosis of breast cancer. DISCUSSION: A substantial minority of women perceived that cancer had substantially affected their personal and work lives. Although most felt their illness confidentiality was well protected and they disclosed freely to family, friends, and work, over 40% of women survivors reported that cancer had affected their work in various ways, and nearly 20% identified insurance problems. It appears that disclosure sometimes results in negative work and insurance experiences. CONCLUSIONS: Health professionals and cancer survivors should engage in education about the potential positive and negative effects of disclosure, and advocacy against cancer-based work and insurance discrimination.

We've come a long way, maybe: recruitment of women and analysis of results by sex in clinical research.

During the last decade, North American policymakers have started to demand more representative research populations. Several papers have suggested that there has been improvement, over the last decade, in the number of studies that include women as subjects, yet these same papers have expressed concern that many investigators omit analysis of data by sex from their research reports. Our study examined all clinical research ethics applications from July 1, 1995, to June 30, 2000, at a tertiary care Canadian university teaching hospital to determine whether the investigator planned to recruit both men and women and whether he or she intended to perform analysis of data by sex. For research studying nonsex-specific conditions, 97.6% of researchers intended to recruit both men and women, yet only 20.2% planned to perform analysis of data by sex. This proportion decreased from 29.9% in 1995-1996 to 16.9% in 1999-2000. Seventy-seven percent of the applications submitted were for studies involving drugs, and only 17% of these nonsex-specific studies planned an analysis of data by sex. The results of this study indicate that although researchers in Canada are aware of the importance of planning to recruit women into clinical trials, more needs to be done to ensure that they plan and perform analyses of data by sex.

Rural physicians' perspectives on cervical and breast cancer screening: a gender-based analysis.

Several studies highlight the role of physicians in determining cervical and breast cancer screening rates, and some urban studies report higher screening rates by female physicians. Rural women in North America remain underscreened for breast and cervical cancers. This survey was conducted to determine if there were significant gender differences in practices and perceptions of barriers to breast and cervical cancer screening among rural family physicians in Ontario, Canada. One hundred ninety-one family physicians (response rate 53.1%) who practiced in rural areas, small towns, or small cities completed a mail questionnaire. The physicians' mean age was 44.4 years (SD 9.9), and mean number of years in practice was 16.6 years (SD 10.3). Over 90% of physicians reported that they were very likely to conduct a Pap test and clinical breast examination (CBE) during a periodic health examination, and they had high levels of confidence and comfort in performing these procedures. Male (68%) and female (32%) physicians were similar in their likelihood to conduct screening, levels of confidence and comfort, and knowledge of breast and cervical cancer screening guidelines. However, the self-reported screening rates for Pap tests and CBE performed during last year were higher for female than male physicians (p < 0.01). Male physicians reported they were asked more frequently by patients for a referral to another physician to perform Pap tests and CBE (p < 0.001). Also, male physicians perceived patients' embarrassment as a stronger barrier to performing Pap tests (p < 0.05) and CBE (p < 0.01) than female physicians. No gender differences were observed in screening rates or related barriers to mammography referrals. These findings suggest that physicians' gender plays a role in sex-sensitive examination, such as Pap tests and CBE. There is a need to facilitate physician-patient interactions for sex-sensitive cancer screening examinations by health education initiatives targeting male physicians and women themselves. The feasibility of providing sex-sensitive cancer screening examinations by a same-sex health provider should also be explored.

Primary prevention of violence against women.

The best mechanisms to prevent violence against women were reviewed in a critical appraisal conducted by the University Health Network Women's Health Program. Several promising primary interventions were identified. These included: educational and policy-related interventions to change social norms, early identification of abuse by health and other professionals, programs and strategies to empower women, safety and supportive resources for victims of abuse, and improved laws and access to the criminal justice system. The policy recommendations emerging from this analysis are presented.

Men with prostate cancer: influence of psychological factors on informational needs and decision making.

OBJECTIVES: Studies indicate that men with prostate cancer (MPC) adopt passive roles in cancer management; however, increasing public awareness of prostate cancer and advocacy by MPC and their allies suggest otherwise. This study looks at the information that is important to MPC; their preferred participation in decision making; and the influence of sociodemographic, disease, and psychological factors on information needs and decision preferences. METHOD: Consecutive men diagnosed with prostate cancer and attending two tertiary care cancer clinics completed questionnaires on information needs and decision preferences. Questions included demographic information, health and disease status, psychosocial functioning, optimism, and decisional preferences and information preferences for content, type, focus, format, and amount. RESULTS: Questionnaires were completed by 101 MPC. Their mean age was 70 years and most were married and well-educated. Over 70% wanted detailed information at all illness stages focusing on their disease, treatment, survival, self-care, and empowerment. Over 60% of MPC wanted shared decision making with their physician. Psychological variables were found to influence information needs but not involvement in decision making. CONCLUSION: These results represent a challenge to health-care providers for accomodating the informational needs and decision preferences of individual MPC.

Sex inequality in kidney transplantation rates.

BACKGROUND: Men in the United States undergoing renal replacement therapy are more likely than women to receive a kidney transplant. However, the ability to pay may, in part, be responsible for this finding. OBJECTIVE: To compare adult male and female transplantation rates in a setting in which equal access to medical treatment is assumed. METHODS: Using data from the Canadian Organ Replacement Register, the rate of first transplantations was computed for the 20, 131 men and the 13,458 women aged 20 years or older who initiated renal replacement therapy between January 1, 1981, and December 31, 1996. Poisson regression analysis was used to estimate the male-female transplantation rate ratio, adjusting for age, race, province, calendar period, underlying disease leading to renal failure, and dialytic modality. Actuarial survival methods were used to compare transplantation probability for covariable-matched cohorts of men and women. RESULTS: Men experienced 20% greater covariable-adjusted kidney transplantation rates relative to women (rate ratio, 1.20; 95% confidence interval, 1.13-1.27). The sex disparity was stronger for cadaveric transplants (rate ratio, 1.23) compared with those from living donors (rate ratio, 1.10). The 5-year probability of receiving a transplant was 47% for men and 39% for women within covariable-matched cohorts (P<.001). The sex disparity in transplantation rates increased with increasing age. The sex effect was weaker among whites and Oriental persons (Chinese, Japanese, Vietnamese, Cambodian, Laotian, Filipino, Malaysian, Indonesian, and Korean) and stronger among blacks, Asian Indians (Indian, Pakistani, and Sri Lankan), and North American Indians (aboriginal). CONCLUSION: Since survival probability and quality of life are superior for patients who undergo transplantation relative to those who undergo dialysis, an increased effort should be made to distribute kidneys available for transplantation more equitably by sex among patients undergoing renal replacement therapy.

Are there special considerations in the prescription of serotonin reuptake inhibitors for women?

OBJECTIVE: To present information on special considerations in the prescription of selective serotonin reuptake inhibitor (SSRI) antidepressant drugs to women. METHODS: Literature review and analysis of adverse drug reactions to SSRIs reported to Health Canada between 1986 and 1996. RESULTS: SSRIs are prescribed twice as often to women as to men. Special considerations are required of the social context in which the illness occurs, biological aspects of the illness, the effects of endogenous and exogenous sex steroids, menstruation, pregnancy, lactation, and menopause. Serious or fatal side effects are most commonly drug-drug or drug-alcohol interactions, and endocrine side effects are more common in women than men. CONCLUSIONS: Although SSRIs are relatively effective and safe when prescribed to women, further research is required for long-term follow-up of children exposed to these drugs in utero or during lactation. Continued study of the effects of sex steroids on pharmacodynamics and kinetics and ongoing monitoring and reporting of side effects in women is required. Special consideration of endocrine side effects and drug-drug and drug-alcohol interactions are needed for optimal safety.

Using the ALPHA form in practice to assess antenatal psychosocial health. Antenatal Psychosocial Health Assessment.

BACKGROUND: The assessment of the psychosocial health of pregnant women and their families, although recommended, is not carried out by most practitioners. One reason is the lack of a practical and evidence-based tool. In response, a multidisciplinary group created the Antenatal Psychosocial Health Assessment (ALPHA) form. This article describes the development of this tool and experience with it in an initial field trial. METHODS: A systematic literature review revealed 15 antenatal psychosocial risk factors associated with poor postpartum family outcomes of woman abuse, child abuse, postpartum depression, marital/couple dysfunction and increased physical illness. The ALPHA form, incorporating these risk factors, was developed and refined through several focus groups. It was then used by 5 obstetricians, 10 family physicians, 7 midwives and 4 antenatal clinic nurses in various urban, rural and culturally diverse locations across Ontario. After 3 months, these health care providers met in focus groups to discuss their experiences. A sample of pregnant women assessed using the ALPHA form were interviewed about their experience as well. Results were analysed according to qualitative methods. RESULTS: The final version of the ALPHA form grouped the 15 risk factors into 4 categories--family factors, maternal factors, substance abuse and family violence--with suggested questions for each area of enquiry. The health care providers uniformly reported that the form helped them to uncover new and often surprising information, even when the women were well known to them. Incorporating the form into practice was usually accomplished after a period of familiarization. Most of the providers said the form was useful and would continue to use it if it became part of standard care. The pregnant women in the sample said they valued the enquiry and felt comfortable with the process, unless there were large cultural barriers. INTERPRETATION: The ALPHA form appears to be an important tool in assessing psychosocial health in pregnancy and to be readily integrated into practice. More study is required to quantify the number of risks identified and resources used, to determine the form's reliability and validity and, ultimately, to assess the effect of its use on postpartum outcomes.