Prioritizing indigenous health equity in health registers: an environmental scan of strategies for equitable ascertainment and quality data.

BACKGROUND: Cerebral palsy (CP) registers serve as instrumental tools to support development of care pathways, preventative strategies, and health gains. Such health gains, however, are not always universal, with Indigenous health inequities common. To support Indigenous health, health registers need complete, consistent, and high-quality data. The aim of this study was to identify perceived barriers to the ascertainment of Indigenous peoples on health registers and to collate strategies supporting comprehensive ascertainment and achievement of high-quality Indigenous data. METHODS: Environmental scanning methods were utilized within a Kaupapa Maori theoretical framework, which aims to produce research that is transformational and supportive of Indigenous health gain. Knowledge and insights were obtained from CP registers in countries with Indigenous populations and complemented by information from health registers in Aotearoa New Zealand (NZ). Data collection methods included an online survey and scan of organizational websites. Data extraction focused on general information about the register, barriers to ascertainment, and strategies to support ascertainment and high data quality. RESULTS: 52 registers were identified, 20 completed the survey and 19 included in the study (CP registers, n = 10, NZ health registers, n = 9). Web scan data were included for the other 32 registers (CP registers, n = 21, NZ health registers, n = 11). Indigenous health equity was identified in the visions and aims of only two health registers. Ethnicity data collection was identified in nearly three quarters of survey respondents and a limited number of organizational websites. Over half of survey respondents described system, health provider/service, or workforce barriers to ascertainment. Strategies were categorized into collaboration, health provider/service, workforce, and systems-levels. Indigenous-specific strategies were limited and focused on personal behaviour and access to registration. CONCLUSIONS: CP and other health registers can have a significant role in identifying and addressing Indigenous health inequities. However, this is not currently an overt priority for many registers in this study and few registers describe ascertainment and data quality strategies specific to Indigenous peoples. Significant opportunity exists for health registers to be accountable and to implement approaches to support Indigenous health equity, address structural determinants of inequities, and achieve health gain for all.

Response assessment in paediatric intracranial ependymoma: recommendations from the Response Assessment in Pediatric Neuro-Oncology (RAPNO) working group.

Response criteria for paediatric intracranial ependymoma vary historically and across different international cooperative groups. The Response Assessment in the Pediatric Neuro-Oncology (RAPNO) working group, consisting of an international panel of paediatric and adult neuro-oncologists, neuro-radiologists, radiation oncologists, and neurosurgeons, was established to address both the issues and the unique challenges in assessing the response in children with CNS tumours. We established a subcommittee to develop response assessment criteria for paediatric ependymoma. Current practice and literature were reviewed to identify major challenges in assessing the response of paediatric ependymoma to clinical trial therapy. For areas in which data were scarce or unavailable, consensus was reached through an iterative process. RAPNO response assessment recommendations include assessing disease response on the basis of changes in tumour volume, and using event-free survival as a study endpoint for patients entering clinical trials without bulky disease. Our recommendations for response assessment include the use of brain and spine MRI, cerebral spinal fluid cytology, neurological examination, and steroid use. Baseline postoperative imaging to assess for residual tumour should be obtained 24-48 h after surgery. Our consensus recommendations and response definitions should be prospectively validated in clinical trials.

Indigenous health equity in health register ascertainment and data quality: a narrative review.

BACKGROUND: Health registers play an important role in monitoring distribution of disease and quality of care; however, benefit is limited if ascertainment (i.e., the process of finding and recruiting people on to a register) and data quality (i.e., the accuracy, completeness, reliability, relevance, and timeliness of data) are poor. Indigenous peoples experience significant health inequities globally, yet health data for, and about, Indigenous peoples is often of poor quality. This narrative review aimed to (i) identify perceived barriers for the ascertainment of Indigenous peoples on health registers, and (ii) collate strategies identified and used by health registers to support comprehensive ascertainment and high-quality data for Indigenous peoples. METHODS: A Kaupapa Maori theoretical framework was utilized to guide this work. Four electronic databases were systematically searched for original articles and screened for eligibility. Studies involving health registers with Indigenous population(s) identified were included if either ascertainment or data quality strategies were described. Data extraction focused on the reporting of research involving Indigenous peoples using the CONSIDER checklist domains, ascertainment, and data quality. RESULTS: Seventeen articles were included spanning publication between 1992 and 2020. Aspects of four of eight CONSIDER domains were identified to be included in the reporting of studies. Barriers to ascertainment were themed as relating to 'ethnicity data collection and quality', 'systems and structures', 'health services/health professionals', and 'perceptions of individual and community-level barriers'. Strategies to support ascertainment were categorized as 'collaboration', 'finding people', and 'recruitment processes'. Categorized strategies to support data quality were 'collaboration', 'ethnicity data collection and quality', 'systems-level strategies', and 'health service/health professional-level strategies'. CONCLUSIONS: Poor-quality data for Indigenous peoples in health registers prevents the achievement of health equity and exemplifies inaction in the face of need. When viewed through a critical structural determinants lens, there are visible gaps in the breadth of strategies, particularly relating to the inclusion of Indigenous peoples in health register and research governance, and actions to identify and address institutional racism. Indigenous led research, meaningful collaboration, and a sharing of knowledge and experiences between health registers is recommended to enable research and health registers that support Indigenous self-determination and health equity.

The economic cost of Indigenous child health inequities in Aotearoa New Zealand-an updated analysis for 2003-2014.

AIMS: This study estimates of the cost of Indigenous child health inequities in New Zealand. METHODS: Standard quantitative epidemiological and cost of illness methodologies were used within a Kaupapa Maori framework. Data for 2003-2014 on children under 15 years were obtained from government datasets. Rates of potentially avoidable hospitalisations and mortality, as well as excess or under-utilisation were calculated. Publicly funded health sector costs, costs to families and costs of premature mortality were used to estimate the costs (or savings) of inequities. RESULTS: Maori children had lower utilisation rates than non-Maori for primary healthcare, outpatient care, medicines, laboratory investigations and care after an accident/injury. Maori children had greater rates of avoidable hospitalisation (RR=1.36, 95% CI 1.35-1.37) and death (RR 1.98, 95% CI 1.84-2.13). Inequalities between Maori and non-Maori children cost in excess of $170 million NZD each year. This includes an annual net savings for the government health sector of $4 million NZD, with an annual cost to society of around $175 million NZD. CONCLUSIONS: The under-serving of Maori children in the health sector saves the government health system money, yet imposes a huge cost on Maori families and society. In addition to avoiding considerable human suffering, reducing child health inequities would result in significant economic benefits.

Ethnic inequities in life expectancy attributable to smoking.

AIM: To determine the contribution of smoking-related deaths to the life expectancy gap in both Maori and Pacific people compared with non-Maori/non-Pacific people in New Zealand. METHODS: Death registration and population data between 2013 and 2015 were used to calculate life expectancy. To determine the contribution of smoking to the life expectancy gap, population attributable fractions for all causes of death where smoking is a casual risk factor were calculated using age- and ethnic-specific smoking data from the 2013 New Zealand Census and relative risk estimates from the American Cancer Society Cancer Prevention Study II. Population attributable fractions were applied to all deaths registered in New Zealand for the 2013-15 period to estimate the number of deaths attributable to tobacco smoking. The life expectancy gap was decomposed using the Arriaga method. The gap was decomposed both overall and by specific smoking attributable causes of death. RESULTS: Between 2013 and 2015 an estimated 12,421 (13.4% of all deaths) were attributable to smoking. Nearly one in four (22.6%) deaths among Maori were attributable to smoking (2,199 out of 9,717 deaths) and nearly one in seven (13.8%) among Pacific people (512 out of 3,720 deaths). Among non-Maori/non-Pacific people, one in eight (12.3%) deaths were attributable to smoking (9,710 out of 78,759 deaths). Higher rates of smoking attributable mortality were responsible for 2.1 years of the life expectancy gap in Maori men, 2.3 years in Maori women, 1.4 years in Pacific men and 0.3 years among Pacific women. Cancers of the trachea, bronchus and lung, chronic obstructive pulmonary disease (COPD) and ischaemic heart disease were the leading smoking attributable causes of death contributing to the gap. CONCLUSION: Smoking is an important preventable risk factor contributing to ethnic inequities in life expectancy for Maori men and women, and Pacific men. Dramatic declines in smoking-attributable deaths can be achieved by reducing smoking prevalence rates. Preventing smoking initiation and increasing cessation rates must remain a top priority for the Ministry of Health and District Health Boards. Smokefree initiatives should be reoriented to be Tiriti o Waitangi (Treaty of Waitangi) compliant and better meet the needs of Maori and Pacific people who smoke. Addressing the residual risk in ex-smokers through equitable early diagnosis and treatment of smoking-related conditions will further assist a more rapid closing of life expectancy gaps for Maori men and women and Pacific men. The next five years provide the opportunity to demonstrate commitment to achieving a smokefree Aotearoa for all: an aspiration, based on the current trajectory, which is most probably out of reach.

"It's not just about prostate cancer, it's about being a gay man": A qualitative study of gay men's experiences of healthcare provision in the UK.

Following a diagnosis of prostate cancer, men require information and support from healthcare providers which is tailored to their individual needs. Studies reporting on the needs of gay men with prostate cancer, and their experiences of healthcare provision, are lacking. This study highlights the issues affecting this group of men and the implications for healthcare delivery in the United Kingdom. In-depth interviews were conducted with 12 gay men who had been diagnosed with prostate cancer. A phenomenological approach was used to collect and analyse data. Participants wanted, and expected, candid discussions with healthcare professionals, about how prostate cancer could affect their lives, sexual function, and how to access culturally relevant support before and after treatment. Participants perceived that their healthcare team had little knowledge about their needs, and if, or how, their experience differed due to their sexual orientation. Information provided was perceived as being misplaced or informed by heteronormative assumptions. Consideration should be given to requesting sexual orientation when recording patient information, if patients are willing to disclose. Training should be provided for healthcare professionals to enable them to provide information and support that is culturally relevant at all stages of the consultation.

Mental health emergencies: using a structured assessment framework.

People who have mental health crises while attending emergency departments require immediate assessment and management, and staff need to be prepared to meet the specific needs of this patient group. This article provides an overview of the Public Psychiatric Emergency Assessment Tool, which is used by Lancashire Constabulary, among others, to share information with healthcare professionals. By using the tool, practitioners can organise and structure the information they acquire during patient assessments, and from accompanying carers, paramedics or police. They can then pass this information on to specialist mental health professionals.

Mental health emergencies: using a structured assessment framework.

People who have mental health crises while attending emergency departments (EDs) require immediate assessment and management, and ED staff must be prepared to meet the specific needs of this client group. This article gives an overview of the public psychiatric emergency assessment tool (Wright et al 2008), which is used by, for example, the Lancashire Constabulary to share information with healthcare professionals. By using the tool, practitioners can organise and structure the information they acquire during patient assessments, and from accompanying carers, paramedics, or police. They can then pass this information on to mental health specialists.

Population based time trends and socioeconomic variation in use of radiotherapy and radical surgery for prostate cancer in a UK region: continuous survey.

OBJECTIVE: To examine variation in the management of prostate cancer in patients with different socioeconomic status. DESIGN: Survey using UK regional cancer registry data. SETTING: Regional population based cancer registry. PARTICIPANTS: 35 171 patients aged >or=51 with a diagnosis of prostate cancer, 1995-2006. MAIN OUTCOME MEASURES: Use of radiotherapy and radical surgery. Socioeconomic status according to fifths of small area deprivation index. RESULTS: Over the nine years of the study, information on stage at diagnosis was available for 15 916 of 27 970 patients (57%). During the study period, the proportion of patients treated with radiotherapy remained at about 25%, while use of radical surgery increased significantly (from 2.9% (212/7201) during 1995-7 to 8.4% (854/10 211) during 2004-6, P<0.001). Both treatments were more commonly used in least deprived compared with most deprived patients (28.5% v 21.0% for radiotherapy and 8.4% v 4.0% for surgery). In multivariable analysis, increasing deprivation remained strongly associated with lower odds of radiotherapy or surgery (odds ratio 0.92 (95% confidence interval 0.90 to 0.94), P<0.001, and 0.91 (0.87 to 0.94), P<0.001, respectively, per incremental deprivation group). There were consistently concordant findings with multilevel models for clustering of observations by hospital of diagnosis, with restriction of the analysis to patients with information on stage, and with sequential restriction of the analysis to different age, stage, diagnosis period, and morphology groups. CONCLUSIONS: After a diagnosis of prostate cancer, men from lower socioeconomic groups were substantially less likely to be treated with radical surgery or radiotherapy. The causes and impact on survival of such differences remain uncertain.

Renewing everyday hope: the hope experience of family caregivers of persons with dementia.

The purpose of this grounded theory study was to explore the experience of hope for family members caring for a person with dementia. Seventeen family members caring for persons with dementia were interviewed. The participants described their hope as the possibility of a positive future within their daily lives and in the social context of grief and loss, stress, fatigue, and constantly dealing with challenging behaviours of the person with dementia. The main concern of the study participants was "fading hope," which they dealt with by "renewing every day hope" through (a) coming to terms, (b) finding positives, and (c) seeing possibilities.

Reclaiming the humanity in personality disorder.

This paper provides a commentary upon the nursing care of individuals diagnosed with personality disorder and associated education courses. The discussion focuses upon recent policy trends in the UK as a point of departure. This policy discourse is critical of mainstream mental health services in previously operating to exclude such individuals. One of the consequences has been a recent growth in interest in relevant training courses, many of which devote significant attention to staff attitudes regarding this client group. Various previous researchers and commentators have remarked upon the implications for practice of a perceived negative attitude among care staff. We reflect upon our own anecdotal experience of developing and delivering new university-based courses for practitioners working in the field of personality disorder to offer a particular critique of the UK context, in which this policy, training, and practice is framed. Social constructionist theories are drawn on to offer insights into public and practitioner discourse and the possible effects on therapeutic relationships. The available discourse constructs individuals with a diagnosis of personality disorder as essentially different from other people. We argue that staff training and practice development initiatives are likely to be more successful if such discourse is challenged, and attempts are made in therapeutic encounters to recognize shared characteristics and positive attributes as much as perceived difference and negative attributes. We refer to this as a re-engagement with common humanity. Despite the singular national context, the discursive themes explored are not necessarily restricted to the UK.

The experience of hope for informal caregivers of palliative patients.

This study explored the experience of hope for informal caregivers of palliative patients. Interviews were conducted with 10 caregivers living with and providing care to a palliative patient. The interview data were analyzed using grounded theory qualitative methods. "Eroding hope" was their main concern--a result of bad days, negative messages, and experiences with the health care system. The participants dealt with eroding hope by "hanging on to hope." Hanging on to hope had four subprocesses: a) doing what you have to do, b) living in the moment, c) staying positive, and d) writing your own story. The support of friends, family, and health care professionals, and spiritually connecting with something bigger and stronger were subprocesses. These findings have application for informal caregivers providing palliative care at home, as a basis for assessment and interventions. Health care professionals need to recognize and value the experience of hope for the informal caregivers of palliative patients.