INTRODUCTION

There is a renewed focus on palliative care at home with the UK Government's pledge to increase quality and choice over care at the end of life.1 At present many patients are not able to exercise this choice. Only 20% of deaths from all causes and 24% of cancer deaths in England and Wales occur in people's homes.2 This contrasts with an expressed preference to remain at home until death by half or more of terminally ill patients.3^,4 Many carers would also prefer to support the patient at home until death.5^,6 High-quality palliative care is required for patients to remain at home until death. GPs have a pivotal role to play in delivering palliative care, as most patients with advanced disease are under their GP's care during most of their illness,7 while district nursing teams have a complementary role in promoting quality of life,8 although they have been found to have more input in palliative care with cancer patients.9

Studies, however, have revealed problems with symptom management of palliative care patients in the community during the last year of life. Pain is reported as a very prevalent symptom,10^–12 rated as very distressing in 56–61% of patients.9^,10 Carers describe high levels of poorly controlled pain in general practice, in 33–48% of patients,13^,14 compared to GP reports of 16% of patients.12 Other common symptoms are nausea and vomiting,9^–12 constipation,9^–12^,15 dyspnoea,9^–12^,15 and fatigue.15 These symptoms are reportedly poorly controlled or untreated in 13–30% of patients, depending on whether lay carers13^,14 or health professionals12 are rating symptom control. Difficulties in management are not confined to physical symptoms. In the last year of life, anxiety is also a common symptom, in 32–78% of palliative patients.10^–12 Reports of symptoms of depression or low mood range from 23% of patients when symptom rating is by GPs,11 to 71% of patients when symptom reports are from the carer's perspective.9 Poorly controlled symptoms of anxiety and depression are reported in 20–33% of patients.12^,14

Patients are unlikely to achieve home care and death at home when symptoms remain uncontrolled. In a review of place of death and access to home care services, symptom control issues were found to be an important factor in inpatient admission.16 Reasons for poor symptom control for palliative patients in primary care are not clear. In particular there has been limited investigation of symptom assessment, which underlies good symptom control. Studies comparing patients' and professionals' assessments of symptoms have been conducted in different settings: palliative care units,17^,18 cancer and oncology centres,19^–21 and at referral to specialist palliative care services,22 but there is limited information from primary care.23 Studies have found physicians tend to underestimate pain severity, which can lead to inadequate pain management.18^–21^,23 In contrast, clinicians appear to overrate patients' levels of emotional distress.17^,24 These are important issues for palliative care research, which have not been evaluated in primary care. This paper investigates agreement on symptom assessments between patients at home and primary care professionals as part of a larger study examining provision of palliative care in primary care.25

METHOD

Patients recruited were adults, in the palliative phase of a progressive illness, estimated to be in their last year of life (Box 1). Health professionals in both primary care and secondary care assisted with identifying suitable patients for the study. In primary care GPs and district nursing teams were contacted approximately every 2–3 months. They were sent an information letter about the study, with an outline of recruitment criteria, and were free to discuss the study with prospective patients if they wished. Professionals were asked to provide contact details of patients who were suitable for the study. Following implementation of the revised Data Protection Act (1998) in March 2000, professionals passed on study information packs to suitable patients who replied directly to the research team if they were interested in taking part in the study. On receipt of contact details, the research team called patients to arrange a meeting to explain the study further and, if they decided to take part, to obtain their written consent.

To avoid bias from recruiting in primary care practices with a special interest in palliative care, we also recruited via secondary care clinics. Staff in oncology and palliative care and in non-oncology services, including cardiology, renal and chest medicine, assisted with recruitment using similar procedures as in primary care. In addition, two members of the research team helped identify clinic patients who met study eligibility criteria. Only nursing and medical staff known to patients approached them about possible participation and passed on information packs. On receipt of their contact details the same procedure for obtaining consent described above was followed. As recruitment focused on patients, their GPs and district nurses were approached to participate only once patients had agreed to take part. Full details of study recruitment procedures are given elsewhere.26

Patients and professionals used CAMPAS-R, a comprehensive measure validated for palliative care in the community,27 to record their symptom assessments. CAMPAS-R includes eight of the most frequently reported symptoms (pain, nausea, vomiting, constipation, fatigue, breathlessness, patient anxiety and patient depression) experienced by palliative care patients.28 Symptoms are scored using 100 mm visual analogue scales (VAS). To compare patient and professional ratings of symptoms, assessments were made over the previous 24-hour period. Scoring of symptoms also takes account of any medications or treatments in place. Paired data from patients and professionals came from routine contacts with patients at home. Patients completed a CAMPAS-R and GPs and district nurses were asked to complete a similar form, CAMPAS-P, when they had contact with the patient. The form completed by professionals is referred to as CAMPAS-P to distinguish it from the self-assessment CAMPAS-R form completed by patients. The symptom items and format of the two forms are the same.

Where possible, two sets of paired data were obtained; a patient–GP pair and/or a patient–district nurse pair. Duplicate patient–professional pairs and assessments completed more than 1 day apart were excluded from analysis. Visual analogue scales were measured to register a score out of 100 for each symptom. Higher symptom scores represent greater symptomatology. All data for statistical analysis were entered onto a SPSS for Windows database. The two sets of paired data were treated separately in each analysis. Missing data for any particular symptom from either a patient or professional were eliminated from analyses involving that symptom. All tests were two tailed.

Any score above zero was taken to indicate presence of a symptom. First, prevalence of symptoms from each perspective was calculated. The McNemar test was used to examine differences in proportions reporting individual symptoms. Then, within each paired data set, medians and 1st/3rd quartiles were computed to compare patient and professional ratings. Medians and 1st/3rd quartiles were computed for difference scores in each set of patient–professional pairs (difference score = professional score minus patient score). As scores were not normally distributed, the Wilcoxon matched pairs signed ranks test was used to test for differences in scores between raters.

Agreement on symptom scores between patients and professionals was measured using intraclass correlation techniques (ICCs) and percentage agreement. For ICCs, two raters were compared on each occasion, the patient and their GP/district nurse. A two-way mixed effect model was used, selecting the absolute agreement definition. The single-measure ICC is reported. To assist interpretation, visual inspection of data was undertaken by plotting difference scores against means which permitted examination of patterns of discord29^,30 (see commentary). (The plots are presented as Supplementary Figures 1 and 2.) Difference scores were also used to examine percentage agreement between raters, accepting patient and professional scores within 10 mm of each other as the defined level of agreement. Overestimation and underestimation by professionals as compared to patient scores was also determined.

RESULTS

Two subsamples, from a larger palliative care in primary care study sample,25 provided data for patient–GP pairs and patient–district nurse pairs, described in Table 1. There were no differences between participants and non-participants in patient–GP paired analysis. In patient–district nurse pairs, participants were significantly older than those who did not contribute paired data. Full details of the main study sample are given elsewhere.27 In brief, a total of 215 patients were approached to take part in the main study; 109 agreed (51%) and 106 (49%) declined. There were no significant differences between participants and non-participants in the main study sample with regard to sex or diagnosis, but non-participants were significantly older and more likely to have died within 2 months of referral to the study.

Paired data were not obtained from GPs or from district nurses for all patients who took part in the study. Twenty-five patients (23%) recorded no visit by or to their GP during the study. Some patients recorded that their GPs contacted them, though no CAMPAS-P was forwarded to the researchers. Altogether 74 patient–GP pairs were obtained. Forty-nine (45%) patients did not receive a visit from a district nurse during the study, though 60 patients reported a total of 191 district nurse visits. We received patient–district nurse pairs for 52 cases (eight GPs and six district nurses in the sample completed more than one CAMPAS-P, but for a different patient on each occasion, resulting in unique patient–GP and patient–district nurse pairings. Repeating the analysis without these duplicates resulted in broadly the same findings). Forty patients in the patient–district nurse pairs also contributed data as patient–GP pairs.

The prevalence of each symptom reported by patients and professionals is summarised in Table 2. Few patients paired with GPs reported vomiting. Prevalence of constipation reported by patients in both GP and district nurse pairs is low, but a substantial proportion of patients reported nausea in patient–district nurse pairs. The majority of patients scored the presence of all other symptoms. Anxiety and depression were significantly more likely to be reported by both GPs and district nurses than by patients. There were no significant differences between patients and district nurses with regard to prevalence of physical symptoms, except for constipation. There were significant differences between GPs and patients in reporting of nausea, vomiting and constipation.

Symptoms scores by professionals and patients are presented in Table 3. Overall, both GPs and district nurses assessed emotional symptoms as more severe than patients did. For physical symptoms, GPs assessed nausea, vomiting, fatigue and breathlessness as significantly more severe than patients did, whereas district nurses assessed only fatigue as significantly more severe.

Using ICCs (Table 4) patient–GP agreement appears higher on severity of physical symptoms than on emotional symptoms, with better agreement for pain, nausea, fatigue and breathlessness; however, 95% confidence intervals overlap, indicating this is not a significant difference. Similarly while agreement between patients and district nurses appears slightly better on most symptoms, ICCs did not differ significantly between GPs and district nurses on any of the symptoms.

Percentage agreement between patients and professionals was also examined. Table 5 is based on difference scores, between patient and professional ratings for individual symptoms. As well as overall agreement on scoring of each symptom, the percentage of agreement that comes from 0–0 scores (agreement about absence of symptoms) is included. On the whole, the less prevalent the symptom, the higher the agreement between patient and professional. Hence, the highest levels of agreement were for vomiting, constipation and nausea in both datasets, where there was agreed absence of symptoms (many 0–0 scores). This contrasts with low agreement for fatigue which was the most prevalent symptom (fewest 0–0 scores).

The extent to which professionals over- or underestimated symptom severity was also examined. On the whole, overestimation of symptoms by professionals was more common than underestimation, particularly for fatigue, breathlessness and emotional symptoms. Among GPs, the exception was pain. We found that more GPs underestimated patient ratings of pain severity than overestimated it. District nurses more commonly overestimated symptom severity except for vomiting, although its prevalence was low. With pain and nausea, the same proportion of district nurses overestimated as underestimated patient ratings, the majority falling in the 11–50 mm range.

DISCUSSION