Patients with advanced cancer and their family caregivers perception of treatment and support services

Objective
To explore perceptions held of treatment and support services by patients with advanced cancer and their family caregiver; identify the sources of this information together with the factors that shaped their perception; compare this understanding over time and evaluate the congruence of perception held by patient and family caregiver.

Background
There is a paucity of research on what doctors actually tell patients with advanced cancer and almost no research on what is told to the family caregiver. Sources of the information are poorly examined, hindered by a lack of an agreed taxonomy to assist in knowledge building. The focus within the literature remains centred on the dyad of care - patient and physician and the nature of the relationship between the tertiary and primary sectors that together provide medical, nursing, allied health and social services for seriously ill patients is under-researched. The role of the cancer family caregiver in providing quality end of life care is thus an opaque phenomenon within medical literature.

Methods
This thesis formed part of a larger study focused on aspects of quality of life in patients with advanced cancer and their family caregivers. A cohort of 317 subjects, (181 patients and 136 caregivers) from The Canberra Hospital's Cancer Services was followed for six months. Of eligible patients over age 18 with a diagnosis of incurable malignant disease, 181 patients were enrolled (77% participation). Caregivers were nominated by 167 (92%) and 136 agreed to participate. Patients screened from March to August 1996 were enrolled together with their carers. Trained nurse interviewers collected data, for the report used in this thesis at enrolment, weeks one and weeks 12 using questionnaires to obtain relevant socio-demographic and clinical characteristics and questions on information giving together with a standard health status measure.

Findings
Twenty per cent of patients considered illness to be non-life threatening; but only 10 per cent of caregivers. Less than half of respondents correctly perceived treatment intent as non-curative; with almost one third of patients and a quarter of caregivers believing the intent of treatment was cure. Most patients identified the specialist as the source of information regarding illness and 77% of caregivers; but only around half also nominated the general practitioner. These figures did not change significantly over time. While congruence of knowledge of available health and community support services for dyads was quite low in some areas, overall household knowledge was high. Sources identified were mainly non-medical. There were significant gender and age differences in understanding. At baseline, more women than men had an accurate perception of treatment intent and these numbers increased over time. Men's perception did not change. Residence was also an important predictor with people from the country more likely to be confused about the goals of treatment. A series of multivariate logistic regressions were undertaken of patient and their family caregivers correct knowledge of treatment goals. Only marital status and place of residence remained significant predictors with patients who were married having an odds ratio of 2.90 greater chance of correct perception and those who lived in the metropolitan area a 5.7 odds ratio. Caregivers aged under 40 were significantly more likely to correctly appraise patient treatment goals together with those whose patients had higher education levels. Other factors were patients' clinical characteristics including a lung cancer diagnosis, recruitment from medical oncology, and patients who were non-ambulatory and had less than six months to live. Further modeling that tested sources of information found this variable did not affect patient model results but caregivers who relied on other health professionals as a source were significantly more likely to have a correct understanding of treatment goals. Neither patients nor caregivers showed any marked differences on the mental composite score of the SF36 when compared with correct/incorrect knowledge of treatment goals.

Discussion
Patient and caregiver understanding of treatment goals are influenced by differing clinical and socio-demographic features. Differing patient perception of the goals of treatment demonstrate no difference in psychological morbidity. Caregivers are confirmed as the third arm in the triad of care, and a carefully described epidemiology profile assists to highlight the role of adult daughters as well as gender factors in spousal caregiving. The specialist was overwhelming the most important source of information in regard to illness for everyone, but a number of others provide information for supportive care, and while household knowledge of community and health services was high, pathways of knowledge were varied.

Conclusions
Our findings point to the need for health providers to acknowledge the triad of care as the unit of care in the advanced cancer setting and design services accordingly. There should be comprehensive, multidisciplinary units across tertiary and primary health, and be sufficiently responsive to the needs of patients and their families to identify early contact with the palliative care team in a "shared care" arrangement that ensures smooth continuity of care to death.