The importance of access to high-quality cancer care
Cancer is an international health priority and a major cause of morbidity and mortality worldwide (World Health Organisation 2009). Accordingly, the identification of key indicators of high-quality cancer care has received much attention (Organisation for Economic Development and Co-operation 2009; Institute of Medicine 2011). Access to care is a key indicator of quality care, as indicated by its inclusion in key documents assessing care standards (The Royal College of Physicians & The Royal College of Radiologists 1993; New South Wales Health 2003; Health Canada 2004; Agency for Healthcare Research and Quality 2009) and population health monitoring (Andersen 2008). Access to care involves not just the availability of a service, but also the ability to utilise that care (Aday & Andersen 1974). The receipt of timely attention is central to high-quality care in that delays in receiving care may lead to more advanced disease (Mohammed et al., 2011) and subsequently reduced length of life (Richards et al. 1999; Fahmy et al. 2006; Teppo & Alho 2009).
Timely access to cancer care as a measure of quality
A number of authors have explored delays in the processes of cancer care from the first experience of a symptom to the receipt of treatments (Salomaa et al. 2005; Evans et al. 2007; Olesen et al. 2009). These explorations provide a useful framework for conceptualising the patient experience as a series of ‘waiting times’ between crucial treatment phases. Olesen et al. (2009) identified these crucial phases as the time between the:
- 1First contact with a primary care provider and initiation of symptom investigation;
- 2Initiation of symptom investigation and subsequent referral;
- 3Hospital/specialist referral and first hospital/specialist visit; and
- 4Referral for treatment and the commencement of treatment.
Internationally, guidelines or standards in relation to acceptable waiting times for these crucial phases of cancer care vary (The Royal College of Physicians & The Royal College of Radiologists 1993; Department of Health 2000; Manpower and Standards of Care in Radiation Oncology Committee 2000; New South Wales Health 2003). Such guidelines are generally focussed on maximising a patient's length of life. However, there is a growing emphasis on the need to minimise psychosocial impacts which may be caused by delays in care (Department of Health 2000; Jones et al. 2001; New South Wales Health 2003; Cancer Care Ontario 2008).
The literature has typically focussed on waiting times (delays) which can have a direct impact on disease outcome. Regardless of whether there is medical risk associated with a delay in accessing care, such delays may have an important psychosocial impact on the patient and his or her family. The consumer experience is an important element for assessing the impact of structures and processes in the care pathway (Sanson-Fisher et al. 2009) given that these elements are often not observable to consumers. It has been argued that endpoint measures, such as patient satisfaction with care, represent an external validation of realised access to care (Aday & Andersen 1974). Previous studies have focussed on patient satisfaction (Cancer Institute New South Wales 2009) and actual waiting times (Gorey et al. 2009; Bilimoria et al. 2011) without gaining a clear sense of the level of patient concern which arises as a result of the perception of waiting.
A relatively new approach to assessing the impact of waiting times on patients is to assess the level of concern arising at critical phases of care. Patient concern regarding waiting times may represent a combination of: (1) the actual or perceived medical risk associated with a delay; (2) patient expectations of care and treatment; and (3) the quality of communication about the waiting times provided by health professionals. Despite reported variations in acceptable waiting times for care, relatively little attention has been directed towards the patients' level of concern in relation to the experience of waiting. Studies which have focussed on the patient experience of waiting times have primarily measured patient satisfaction rather than concern (Gesell & Gregory 2004; Absolom et al. 2006; Groff et al. 2008).
Factors potentially associated with patient experiences of timely access to care
Models which conceptualise access to care from the patient's perspective have identified a range of factors which may be related to actual utilisation of health services, including patient attitudes, socio-demographic characteristics, and structural aspects of treatment centres (Andersen 1995). A number of factors have also been associated with delays in access to cancer care, including greater geographical distance from care (Sowden et al. 1997; Campbell et al. 1999; Jones et al. 2008; Onega et al. 2008; Drury & Inma 2010), income (van Doorslaer et al. 2006), ethnicity (Shi & Stevens 2005) and health insurance (Hoffman & Paradise 2008). Therefore, these factors might also be associated with greater levels of patient concern about such delays.
While the evidence regarding the effect of socio-demographic factors, such as increased distance to care, on disease outcomes is mixed (Sowden et al. 1997; Campbell et al. 1999), equity of patient access is considered an integral part of providing high-quality care (Institute of Medicine 2001). Therefore, an exploration of patient concerns regarding waiting times for treatment and care should also explore the role that socio-demographic factors may play in experiencing such concerns.
Among cancer patients attending outpatient radiation therapy appointments, this study aimed to identify:
- 1(i) The proportion of patients reporting any level of concern regarding the time elapsed between each of:
- • First symptom-related visit to the General Practitioner (GP), and referral to a cancer specialist,
- • Referral to a cancer specialist, and first appointment with the cancer specialist,
- • First appointment with the cancer specialist and receiving a cancer diagnosis,
- • Decision to have surgery and the date of surgery,
- • Decision to have radiotherapy and commencement of radiotherapy,
- • Decision to have chemotherapy and the commencement of chemotherapy;
- 2The proportion of patients reporting ‘any’ level of concern for multiple phases of treatment.
- 3Associations between demographic characteristics, disease characteristics, and self-reported psychological distress, and reporting any level of concern at each phase of treatment.