SUSPECTED CANCER IN PRIMARY CARE
Guidelines for investigation, referral and reducing ethnic disparities
By the NZ Guidelines Group, September, 2009
This guideline aims to help practitioners in primary care:
1. recognise the signs and symptoms that are suggestive of a cancer diagnosis in primary care
2. refer people in a timely manner where cancer is suspected
3. be aware of the investigations that may be appropriate to undertake in the primary care setting.
Ethnicity data quality
The inclusion of ethnicity data in primary care activities is important to ensure that health service planners can monitor health trends by ethnicity and use ethnicity data to monitor progress in addressing disparities and improvement in health outcomes.
Evidence questions the reliability of some ethnicity records in primary care. Using the ‘ever Mäori’ method for classifying ethnicity, Cormack et al. identified that Mäori cancer registrations and deaths were undercounted by about 17% and 6%, respectively for the time period 1996–2001.
Using the ‘ever Mäori’ method, individuals are classified as Mäori if this ethnic group is recorded in any ethnicity field of the death event record, the National Health Index (NHI), any other cancer registration or any hospitalisation.
The Guidelines Development Team (GDT) considered that there should be consistency in the collection of ethnicity data, quality improvement initiatives around ethnicity recording, and a consistent, systematic way of analysing data.
These are important issues for accurately identifying disparity and for service planning and evaluation. Ethnicity data collection should follow the current Ministry of Health protocols.
The site-specific chapters of this guideline will provide the incidence and mortality rates of individual cancers for different ethnic groups (where available) as contextual background information.
More general data, organised by ethnic group, are presented below to highlight the disparities that are known to exist.
Addressing the issue of cancer screening is outside the broad scope of this guideline. However, because of the impact that screening uptake can potentially have on disease outcomes, it is briefly included as part of this disparity chapter.
It is of note that in this area there is a time lag of approximately five years before comparative epidemiological data are published in national reports.
Cormack et al. noted that national screening programme data have identified that equitable screening for breast and cervical cancer has not been achieved for Mäori women.
However, BreastScreen South Limited’s results (70% of eligible Mäori women screened in 2005) suggest that the inclusion of focused efforts and leadership are the key to achieving equity in screening.
Cancer in Pacific peoples in New Zealand
The term ‘Pacific peoples’ describes a diverse group of New Zealand-born individuals and migrants from South Pacific nations who identify with one or more of the Pacific Islands because of ancestry or heritage.
There is limited data available on cancer in Pacific peoples in New Zealand. The Tupu Ola Moui: Pacific Health Chart Book 200412 has provided useful baseline information and will be of value for analysing trends in data in the future.
Pacific women had similar age-standardised registration rates in the period 1996–2000 for breast and lung cancer compared to the total New Zealand population.
Rates were higher in Pacific women for cervical cancer in the age group 45–64 years and lower for colorectal cancer in the age groups 45 years and over.
Pacific men had higher registration rates for lung cancer in all age groups and for prostate cancer in the age group 65 years and over. However, rates for colorectal cancer were lower in the age groups 45 years and over.
Pacific women had higher age-standardised mortality rates for breast cancer in the period 1996–2000 compared to the total New Zealand population. Mortality rates were also higher for cervical cancer in the 45–64 years age group and lung cancer in the age group 65 years and over.
Lower rates were identified for colorectal cancer in the age groups 45 years and over. Pacific men had higher mortality rates for lung cancer in all age groups.
In men aged 65 years and over, mortality rates were higher for prostate cancer and lower for colorectal cancer.
An analysis of cancer registry data for the period 1994–2002 identified age-standardised 5-year relative survival rates by ethnicity (Mäori, Pacific, non-Mäori non-Pacific) and cancer site.
Survival rates were lower in Pacific peoples compared with non-Mäori non-Pacific for colorectal cancer and leukaemia, and for cancers of the bladder, breast, cervix, kidney, ureter and urethra.
In addition, survival rates were lower in Pacific peoples compared with Mäori for melanoma and cancers of the breast, cervix and ovary.
Compared to the general population, Pacific women had lower uptake rates for both breast screening (42% vs 63%) and cervical screening (49% vs 73%) in 2002.
All Asian women had lower uptake rates (not statistically significant) for both mammography (50–64 years of age, 2001–2002) and cervical screening (20–69 years of age, 2001–2003) compared to New Zealand European women.
Trends in disparity
The information presented in this section summarises data from the monitoring report Tracking Disparity: Trends in Ethnic and Socioeconomic Inequalities in Mortality, 1981–2004. This section of the guideline focuses on data relating to ethnic inequalities.
In Tracking Disparity cancer mortality data was linked with census data and inequality trends in mortality rates were examined for four ethnic groups; Mäori, Pacific peoples, Asian peoples and European/Other.
The earliest collected data available to link was the 1981–1984 period and the most recently linked data was that collected in the 2001–2004 period.
The Tracking Disparity report uses the term ‘European/Other’ interchangeably with non-Mäori non-Pacific non-Asian. ‘Non-Mäori non-Pacific non-Asian’ is a constructed group used for analytical reference purposes.
It largely comprises people of European ethnicities (including New Zealand European), but also includes people with African, Middle Eastern and Latin American ethnicities, and other ethnicities – most notably the growing ‘New Zealander’ group. For consistency, this guideline uses the term European/Other.
This section summarises inequalities data related to all-cause cancer. Unless otherwise stated, all data reported is age standardised. For data on specific cancers see the relevant site-specific chapter of this guideline.
Measuring and reporting inequalities in cancer mortality
In the Tracking Disparity report, inequality is measured on absolute and relative scales.
The absolute scales indicate the absolute difference in mortality rates (termed absolute inequality), while the relative scale indicates the ratio of the rates (termed relative inequality).
It is important to look at both the absolute and relative rates as absolute inequalities (rate differences) in New Zealand have tended to remain stable or decline since measurement began in the early 1980s, while relative inequalities (the rate ratios) have increased in the same period.
Together, these data provide a full picture of the trends in cancer mortality inequalities.
Ethnic inequalities in all cause cancer mortality
The mid 1990s saw a decline in all cancer mortality for European/Other men and women.
From 1981–1984 to 2001–2004, there was a 17% reduction for men and a 13% reduction for women.
While all-cancer mortality for this period was stable, among Mäori and Pacific men there was a possible downward trend noted, and among both Mäori and Pacific women, a possible upward trend.
In terms of inequality during this period, there were noted increases in absolute inequality between both Mäori and Pacific women and the European/Other reference group (p for trend=0.07 and 0.08, respectively).
While there was a trend for an increase in absolute inequalities for Mäori men compared to European/Other men, this was not statistically significant (p=0.14). For Pacific men, absolute inequalities remained stable and for Asian peoples of both sexes inequality was negative ie, favouring Asian peoples.
However, relative inequality data indicated a different pattern in cancer mortality trends between ethnic groups.
Notably, there were significant increases for Mäori of both sexes (by about a third), with rate ratios increasing from 1.53 to 1.84 (p for trend=0.04) for men and 1.67 to 2.02 (p=0.03) for women.
While Pacific women started with similar cancer mortality rates to European/Other women in the first period with a rate ratio of 0.95, this increased to 1.38 by 2001–2004 (p=0.05).
Pacific men had about 10% to 50% higher cancer mortality than their European/Other counterparts at all points in time.
Relative inequalities were stable for Asian peoples compared to European/Others.
In summation, whether measuring on an absolute or relative scale, the data reported in Tracking Disparity indicates that inequalities increased in all-cancer mortality for Mäori and for Pacific women compared to the European/Other reference group from 1981–2004.
The exception was for Pacific men, where no significant trend was observed. Inequality measures were also stable (and negative) for Asian peoples compared to the European/Other reference group.
Explanations of disparity
Some disparity can be explained by the relative socio-economic disadvantage amongst minority ethnic groups16 and relative differences in contact with factors that promote ill health, such as smoking.
Studies have shown increasing mortality and morbidity with increased deprivation17 and that smoking and obesity are more prevalent among Mäori than non-Mäori.
Increasing lung cancer trends probably reflect increased tobacco use among Mäori and Pacific peoples.19 Although small, the apparent contribution of smoking and socio-economic position to ethnic inequalities in mortality increased in the time periods 1981–1984 and 1996–1999.
Action to address differences in socio-economic status is likely to be important in reducing ethnic inequalities in health.
However, differences in socio-economic status alone do not explain the observed differences in health status, cancer incidence or cancer mortality. Geographical variations also exist in terms of accessibility to general practitioners21 and mortality rates.
The disparity data (presented in the previous section) suggest that inequities may exist between Mäori and non-Mäori in access to cancer detection, diagnosis and investigation.
Furthermore, it has been reported that Mäori are less likely to have timely or equitable access to high-quality cancer treatments and services.
Access to care
The results from a descriptive report by Crengle et al. identified Mäori use of general practitioner services to be lower than expected, and lower average consultation duration for Mäori compared to non-Mäori.
Although Crampton et al. did not identify a significant difference between ethnicity and average duration of general practitioner visits, annual exposure to primary medical care was greater for those of European ethnicity (94 minutes), compared to Asian, Pacific peoples and Mäori (68, 75 and 86 minutes, respectively).
A further study also found that, after adjustment for age, gender and socio-economic deprivation, Mäori, Pacific and Asian peoples had similar or lower general practitioner consultation rates than European New Zealanders.25
Mäori and Pacific people’s consultation rates would be expected to be higher than European rates given their poorer health status.
Any barrier that prevents optimal access to care at any point of the patient’s pathway has the potential to have an adverse impact on patient outcomes.
The GDT acknowledged that this is not solely restricted to the management of cancer. It is equally applicable to medical services for other medical conditions.
Although there is a lack of data sited specifically in the New Zealand cancer context, there is a large body of international literature on access to medical care in differing health care settings. A systematic review of this literature was beyond the scope of the guideline.
For further details of the approach taken to the literature review, see Appendix A, Methods. The GDT considered the full investigation of this issue as a high priority for future health services research.
Barriers for Mäori
Traditionally, Mäori tend to have a more holistic view of health than the Western-influenced view of the majority of the general New Zealand population.
Mäori belief systems, such as views about reliance on the whänau (family), individual mana, death and dying, and practices associated with tapu/noa, continue to influence health behaviour.
These views may influence, for example, preferences for care, individual help-seeking behaviour and responses to health care providers.
Two key Government publications have provided a framework for the Ministry of Health, District Health Boards and key stakeholders to take a leadership role in improving Mäori health outcomes.
He Korowai Oranga: Mäori Health Strategy provided a framework for the health and disability sectors to take responsibility for the part it plays in supporting the health status of the whänau, while objectives for Mäori health are set out in Whakatätaka Tuarua: Mäori Health Action Plan 2006–2011.
Qualitative research has identified barriers to care from the Mäori perspective from interview data. Based on this research, a conceptual framework was developed to address the issue.
The framework comprises four key areas: costs of care, communication, structural barriers and cultural fit. Cultural fit refers to the ‘fit’ of the health care provider with the patient with respect to language, attitudes, and beliefs.
An individual’s level of comfort when seeking health care will depend upon health care practitioner attitudes and the delivery of culturally appropriate health care.
Barriers to care will undoubtedly vary according to the specific context. In addition, there is likely to be overlap between the key areas (eg, structural barriers can increase costs; communication barriers will be compounded when cultural differences between Mäori patient and health care provider exist).
Each of these barriers is greater for nga hunga hauä (Mäori with disabilities). For Mäori with significant disabilities the impact of multiple barriers can be overwhelming, even though they comprise one of the most vulnerable populations.
Barriers for Pacific peoples
Traditionally, Pacific cultures are orientated towards the social group and concepts of health are holistic.
Many Pacific peoples living in New Zealand use traditional methods of healing as well as Western medicine.
Although there are commonalities, each Pacific nation has its own particular cultural beliefs, customs, values and traditions.
The Pacific Health and Disability Action Plan sets out the strategic direction and actions for improving health outcomes for Pacific peoples.
Six priority areas are identified (child and youth health, promoting healthy lifestyles and well-being, primary health care and preventative services, provider development and workforce development, promoting participation of the disabled, heath and disability information and research).
Limited information is available on Pacific peoples’ access to care to inform the debate. However, Pacific peoples have been reported to experience similar access issues to Mäori.
Practical barriers to care (eg, cost, lack of time and difficulty in obtaining an appointment) and cultural constraints (eg, discomfort with their health care provider and a dislike of drugs) have been identified.
Specific barriers to access that have been reported for Pacific peoples in New Zealand include English being a second language for many patients over 40 years old, heavy family commitments taking priority over the need for health care and a lack of understanding of the nature and/or need for the appointment.
Barriers for other ethnic groups
Although beyond the scope of the literature review for this guideline, it is likely that some of the issues previously raised will also apply to other New Zealanders, especially those in lower socioeconomic groups.
Possible solutions to barriers
No studies were identified that evaluated the effectiveness of cultural competence training on health outcomes in the US Agency for Healthcare Research and Quality’s sponsored review of strategies to improve the quality of health care and/or reduce disparities for ethnic minorities.
However, there was strong evidence to suggest that such training can improve the knowledge of health care providers and good evidence that it can improve the attitudes and skills of health care providers and improve patient satisfaction.
The review also identified strong evidence that provider tracking and reminder systems are effective
in improving the quality of care for minority patients.