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Symptom severity in advanced cancer, assessed in two ethnic groups by interviews with bereaved family members and friends

Jonathan Koffman BA MSc   Irene J Higginson PhD FFPHM     Nora Donaldson CStat PhD  ¹

Department of Palliative Care and Policy, Guy's, King's and St Thomas' Schools of Medicine, King's College London, Weston Education Centre, Cutcombe Road, London SE5 9RJ, UK
¹ Biostatistics Unit, Institute of Psychiatry, King's College London, 103 Denmark Hill, London SE5 8AZ, UK

Correspondence to: Jonathan Koffman E-mail: jonathan.s.koffman{at}kcl.ac.uk

	SUMMARY

TOP SUMMARY INTRODUCTION METHODS RESULTS DISCUSSION REFERENCES

 
Little research has been reported on the experience of cancer among minority ethnic communities in the UK. As part of a wider survey in inner London we interviewed bereaved family members or close friends of 34 first-generation black Caribbeans and of 35 UK-born white patients about symptoms and symptom control in the year before death with cancer. They were drawn from population samples in which the response rates were equal at about 46%.

Symptoms in the two ethnic groups were similar. However, multivariate logistic regression indicated greater symptom-related distress in black Caribbeans for appetite loss, pain, dry mouth, vomiting and nausea, and mental confusion. Respondents were also more likely to say, in relation to black Caribbean patients, that general practitioners (though not hospital doctors) could have tried harder to manage symptoms.

The findings suggest a need for better assessment and management of cancer symptoms in first-generation Caribbean Londoners, guided by a deeper understanding of cultural influences on their responses to advanced illness.

	INTRODUCTION

TOP SUMMARY INTRODUCTION METHODS RESULTS DISCUSSION REFERENCES

 
In 1999 we conducted a survey to compare the last year of life of first-generation black Caribbeans and white patients with advanced disease in an inner London health authority¹. We performed the survey for three reasons. First, existing research on the experience of cancer among black and minority ethnic groups has focused on communities living in the USA^2,3,4,5. These studies looked at early disease and may not apply well to the UK population⁶. Second, a greater understanding of how advanced disease affects people from other populations is essential to develop culturally sensitive and competent healthcare⁷. This may lead to improvements in the quality of life for patients and in the post-bereavement outcomes of family members⁸. Third, as the number of older people within this community increases so will the number with advanced disease. Additional services will be required to meet their needs⁹. In this paper we compare the experience and the management of symptoms of advanced cancer in two population groups with different ethnic origins but similar socioeconomic backgrounds.

	METHODS

TOP SUMMARY INTRODUCTION METHODS RESULTS DISCUSSION REFERENCES

 
The survey was conducted in three inner London boroughs characterized by socioeconomic deprivation and covering a population of 736 000 (1996 mid-year estimates). The black Caribbean community represented 10.4% of the total population, one of the highest concentrations of this ethnic group in the region. Data on all 5130 deaths recorded during the period December 1997 to November 1998 were collected from health authority death registrations. Patients from the black Caribbean population were identified from the place of birth/ country of origin. A sample of 50 first-generation black Caribbean and 50 white British born patients were recruited from original samples of 106 and 110. 34 and 35, respectively, had experienced advanced cancer. A structured interview schedule was developed by adaptation of a questionnaire from previous surveys^{10, 11}.

Bereaved family members or friends (‘respondents’) were asked whether the deceased had experienced any symptoms (for example, pain, breathlessness, weakness, confusion, loss of appetite) during the last year of life, how distressing these had been (very distressing, fairly distressing, or not distressing), and whether the symptoms had been evident during the last week of life. Respondents were also asked about general practitioners' and hospital doctors' management of pain, breathlessness, vomiting and nausea, and constipation. Trained researchers conducted interviews in the respondents' own homes 8-10 months after a patient's death. The survey had local research ethics committee approval.

Analysis
Quantitative data were subject to univariate and multivariate logistic regression analysis, to adjust for the effect of potential confounders. The main outcome was taken to be a binary indicator of whether a symptom was reported as ‘very distressing’. The main factor assessed was ethnicity, with adjustment for the independent effects of age, gender, the various types of cancer (lung, gastrointestinal, genitourinary, breast, other), patient's place of death (home, hospital, other), symptom duration, and the relationship of the respondent to the deceased. To evaluate the association between ethnicity and the level of symptom relief for those patients who were treated by healthcare professionals, this ordered categorical variable was initially explored in full and as well as being dichotomized into two levels (a lot/some of the time, and a little/not at all). Pearson ² or Fisher's exact test were used as appropriate.

	RESULTS

TOP SUMMARY INTRODUCTION METHODS RESULTS DISCUSSION REFERENCES

 
In the original population samples there were no significant variations in the decision to participate or not to participate with regard to sex, age, or underlying cause of death. The 34 black Caribbeans in the final sample were of similar age to the 35 white patients (62% and 66% over 65). Lung cancer was more common in the white patients (10 vs 4) and haematological cancer in the black patients (6 vs 1). Fewer black Caribbean patients were reported to have died in hospices (4 vs 8).

Figure 1 compares the frequency of symptoms in the two groups and indicates the amount of associated distress. In both groups at least half of the patients were said to have experienced weakness, pain, loss of appetite, dry mouth or thirst, sleeplessness, feeling low, difficulty swallowing, vomiting and nausea, constipation, breathlessness and mental confusion. Multivariate analysis revealed several significant interactions between symptom distress and diagnosis, and place of death. Weakness reported as being ‘very distressing’ was less common among patients with gastrointestinal cancer and for those who died at home. In addition, ‘very distressing’ pain and mental confusion were less common for patients who died in hospital. After adjustment for these effects, the odds ratios of symptom-related distress for black Caribbean patients relative to white patients were significant for appetite loss, dry mouth, vomiting/nausea, pain and mental confusion (Table 1).

View larger version (24K): [in this window] [in a new window]   Figure 1. Reported symptoms and associated distress (black Caribbean n=34, white n=35). Black Caribbean reporting symptoms; White reporting symptoms; -- Black Caribbean reporting symptoms as ‘very distressing’; -- White reporting symptoms as ‘very distressing’

 

View this table: [in this window] [in a new window]   Table 1. Variables showing independent contributions to symptom-related distress

 

The symptoms reported to have been most common in the last week of life were dry mouth, difficulty swallowing, loss of appetite, mental confusion, pain, and weakness, occurring in more than half of patients, with little difference between the groups (see Figure 2).

View larger version (15K): [in this window] [in a new window]   Figure 2. Symptoms reported during last week of life (black Caribbean n=34, white n=35). Black Caribbean reporting symptoms; White reporting symptoms

 

Table 2 records respondents' perceptions of medical management. Of the patients with pain, a higher proportion of the white group had received treatment for pain. Also, a higher proportion of respondents for white patients perceived the general practitioner to have tried hard enough to control the pain. For vomiting/nausea and constipation, general practitioners were thought to have served the two groups equally. Breathlessness was judged to have been controlled less effectively in black Caribbeans.

View this table: [in this window] [in a new window]   Table 2. Respondents' perceptions of management of reported symptoms

 

During their last year of life, 30 (88%) black Caribbean and 28 (80%) white patients were admitted to hospital at least once. Of the patients who were treated, respondents reported that two-thirds of hospital doctors tried hard enough to treat symptoms and there were no differences between the groups.

When asked whether they had received sufficient information during the illness, similar proportions said yes (52% black, 56% white).

	DISCUSSION

TOP SUMMARY INTRODUCTION METHODS RESULTS DISCUSSION REFERENCES

 
This survey suggests that, in the inner-London population examined, ethnic origin had a bearing on the distress caused by cancer symptoms. Before discussing this further we must address the weaknesses of the study. First, the response rates of the original sample, about 46%, were lower than desirable—probably because of residential mobility. Second, the methods of data collection may affect responses. Ahmad¹², for example, suggests that interviewers should be from the same ethnic group as the interviewees. This, however, addresses only one of the possible markers of identity, others being age, gender and social class¹³. (The data obtained by our two black Caribbean interviewers were not obviously different from those of the white interviewers.) Third, how far do the views of bereaved relatives and friends reflect what happened to the deceased? There is conflicting evidence on the validity of using family or surrogates as proxies^14,15. Further, bereaved people will often be subject to extreme emotions that can affect their responses. Respondents with anxiety tend to focus more attention on negative events¹⁶. Fourth, interviews were done up to 10 months after the death, and the shorter the interval between death and interview the easier it is to remember what happened. However, there is no reason to believe that the black Caribbean and white populations would differ in this respect. Fifth, since we did not collect information from the clinical notes we have no data on how treatable the individual symptoms were. There are, however, long-established management guidelines for the four common symptoms we considered—pain, breathlessness, vomiting/nausea, and constipation. Two of these symptoms were considered more distressing in the black Caribbean patient group.

The Independent Inquiry into Inequalities in Health¹⁷ states that, although the health problems in black and minority ethnic groups may differ from those in the ethnic majority, with different causes and different solutions, there are more similarities than differences. The symptom profiles in our two groups were indeed very similar. Of the seventeen symptoms examined, however, all but three were reported more frequently as having been ‘very distressing’ in the black Caribbean patients. Ethnicity was strongly associated with distress in appetite loss, dry mouth, vomiting/nausea, pain and mental confusion. Although no single explanation can account for these differences, several hypotheses are worth exploring, operating in isolation or in combination. First, there may be cultural variations in how symptoms are interpreted by patients and their families. Zborowski¹⁸, for example, demonstrated differences among American, Irish, and other migrant communities' perceptions and illness behaviours surrounding pain. More recent research conducted among cancer patients from diverse populations yielded similar findings¹⁹. This study adjusted for income, a factor that our study did not account for. Second, symptom distress may result from undertreatment²⁰. Whilst hospital doctors were perceived to have served the groups equally, there was a hint that general practitioners performed worse for the black Caribbeans. There was no evidence to suggest that any one provider of care can account for this difference. Differing levels of satisfaction have their roots in expectations of care²¹, and these too may be culturally fashioned²². Lastly, the proximity to the locus of care may have some bearing on how bereaved respondents viewed symptom distress in some patients. Whilst deceased black Caribbean and white patients spent similar periods of time in hospital, fewer black Caribbean patients were admitted to, or died in, hospices. A higher proportion of spouses are said to suffer ‘very great’ anxiety during the caring phase when it takes place at home rather than in hospital or a hospice.²³

Conclusions
This survey points to a need for further development of core competencies for the assessment and management of cancer symptoms, especially in the community. In addition, qualitative research should be conducted on why great symptom distress seems to develop more frequently in black Caribbean patients.

	Acknowledgments

 
We thank the Project Advisory Group (Isobel Bremner from St Christopher's Hospice, Isaac Dweben from Cancer Black Care, Nola Ishmael from the Department of Health and Dr Ruth Wallis from Lambeth, Southwark and Lewisham Health Authority) for help and advice; Dr Polly Edmonds for assisting in the identification of patients with advanced disease; Dr Jeanette Potter for her helpful comments; and, most importantly, the respondents who shared their experiences with us in such detail. The study is funded by the NHS Executive, London Regional Office Research and Development Funding Programme.

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