What is a barrier to cancer care management?

Addressing the barriers to patients’ access to cancer care is critical for improved health outcomes (Jacobs et al., Reference Jacobs, Ir and Bigdeli2012; Neely and Ponshunmugam, Reference Neely and Ponshunmugam2019). A barrier to care is any factor that delays or restricts a patient from accessing, using or benefiting from appropriate and needed health care in a timely manner (Scheppers et al., Reference Scheppers, van Dongen and Dekker2006). Barriers to care contribute to socioeconomic, racial and ethnic, and geographic differences in healthcare utilization and health status (Asanin and Wilson, Reference Asanin and Wilson2008; Jacobs et al., Reference Jacobs, Ir and Bigdeli2012; Huot et al., Reference Huot, Ho and Ko2019; Neely and Ponshunmugam, Reference Neely and Ponshunmugam2019). These barriers can result in irreversible disease progression and even, worsen the cost of care for both the patient and the health system (Jacobs et al., Reference Jacobs, Ir and Bigdeli2012; Huot et al., Reference Huot, Ho and Ko2019). These barriers can be non-medical situations that make a diagnosis or treatment difficult for patients (Scheppers et al., Reference Scheppers, van Dongen and Dekker2006; Asanin and Wilson, Reference Asanin and Wilson2008; Jacobs et al., Reference Jacobs, Ir and Bigdeli2012; Huot et al., Reference Huot, Ho and Ko2019; Neely and Ponshunmugam, Reference Neely and Ponshunmugam2019), including one or more of the following (Scheppers et al., Reference Scheppers, van Dongen and Dekker2006; Walsh et al., Reference Walsh, Harrison and Young2010; Carrillo et al., Reference Carrillo, Carrillo and Perez2011; Jacobs et al., Reference Jacobs, Ir and Bigdeli2012; van Sluisveld et al., Reference van Sluisveld, Zegers and Natsch2012; Walton et al., Reference Walton, McNeill and Stevens2013; Meuter et al., Reference Meuter, Gallois and Segalowitz2015; Cancer Support Community, 2016; Community, 2016; Dunn et al., Reference Dunn, Garvey and Valery2017; Calhoun and Esparza, Reference Calhoun and Esparza2018; Joffe et al., Reference Joffe, Ayeni and Norris2018; Huot et al., Reference Huot, Ho and Ko2019; Lubuzo et al., Reference Lubuzo, Ginindza and Hlongwana2019, Reference Lubuzo, Ginindza and Hlongwana2020):

• • socioeconomic conditions (high cost of care),

• • logistical issues (proximity and distribution of care, and if they have reliable transportation),

• • the healthcare system (coordinated and quality care),

• • lack of availability of services, and

• • lack of culturally competent care.

Accordingly, individuals with these unmet healthcare needs are more likely to experience the following (Bello et al., Reference Bello, Fadahun and Kielkowski2011; Mukansi et al., Reference Mukansi, Smith and Feldman2014; van Rensburg, Reference van Rensburg2014; Jobson, Reference Jobson2015; Le Roux et al., Reference Le Roux, Urry and Sartorius2015; Singh et al., Reference Singh, Abdel Goad and Ramklass2015; Somdyala, Reference Somdyala, Parkin and Sithole2015; Padarath et al., Reference Padarath, King and Mackie2016; Edwards and Greeff, Reference Edwards and Greeff2017, Reference Edwards and Greeff2018; Department of Health, 2017; Made et al., Reference Made, Wilson and Jina2017; Maree et al., Reference Maree, Moshima and Ngubeni2017; Momberg et al., Reference Momberg, Botha and Van der Merwe2017; Hesse, Reference Hesse2018; Joffe et al., Reference Joffe, Ayeni and Norris2018; Moodley et al., Reference Moodley, Walter and Scott2018; Lubuzo et al., Reference Lubuzo, Ginindza and Hlongwana2019; Neely and Ponshunmugam, Reference Neely and Ponshunmugam2019):

• • death from preventable, curable, or controllable disease,

• • delays in receiving appropriate diagnosis and care,

• • receipt of no treatment or substandard treatment, and

• • acute suffering from terminal illnesses due to inadequate pain control and other palliative care services.

Situational analysis of cancer care in SA

The South African health system primarily comprises three sectors. These are a large public sector, which caters for the greater part of the country's population, a slightly smaller, however, rapidly growing private sector, and lastly a non-governmental organization (NGO) sector (Coovadia et al., Reference Coovadia, Jewkes and Barron2009; Jobson, Reference Jobson2015; Padarath et al., Reference Padarath, King and Mackie2016; Department of Health, 2017). The public sector is solely reliant on the state funds for the continued provision of healthcare. The public health system has been transformed into an integrated, comprehensive national service through progressive policy reform, but failures in leadership and stewardship and weak management have led to inadequate implementation of arguably good policies (Coovadia et al., Reference Coovadia, Jewkes and Barron2009). The unemployment rate within the country is also high, thus necessitating the state to bear the burden of healthcare for the nation. The National Department of Health (NDoH) assumes overall responsibility of healthcare with an emphasis on the public sector as a priority focus (Department of Health, 2017). Although there is a relatively high expenditure, when making comparisons with other similar upper-middle income counties, SA's healthcare system seems to be constrained, owing to glaring inequality (Coovadia et al., Reference Coovadia, Jewkes and Barron2009; Jobson, Reference Jobson2015; Padarath et al., Reference Padarath, King and Mackie2016; Department of Health, 2017).

General health service structure in SA

In SA, the health system is complex, with the health service structure organized in a pyramidal approach, with the referral patterns starting from the primary healthcare level through to secondary level, tertiary level, quaternary levels, and medical training institutions (Figure 1; Jobson, Reference Jobson2015; Neely and Ponshunmugam, Reference Neely and Ponshunmugam2019), and this approach is also followed in KwaZulu-Natal (KZN). Specialty care is concentrated at the facilities providing high levels of care, which are mainly located in urban areas. Livelihoods and family lives are shaped by SA's political and economic history (Neely and Ponshunmugam, Reference Neely and Ponshunmugam2019). This healthcare structure extends the time for a patient to receive care from initial screening and diagnosis, often resulting in death before treatment is obtained (Mukansi et al., Reference Mukansi, Smith and Feldman2014; van Rensburg, Reference van Rensburg2014; Singh et al., Reference Singh, Abdel Goad and Ramklass2015; Winkler et al., Reference Winkler, Mangolo and Becher2015; Made et al., Reference Made, Wilson and Jina2017; Maree et al., Reference Maree, Moshima and Ngubeni2017; Hesse, Reference Hesse2018; Joffe et al., Reference Joffe, Ayeni and Norris2018; Moodley et al., Reference Moodley, Walter and Scott2018; World Health Organization, 2018b; Lubuzo et al., Reference Lubuzo, Ginindza and Hlongwana2019; Neely and Ponshunmugam, Reference Neely and Ponshunmugam2019).

Fig. 1.

Organizationaland Referral hierarchy of oncology and general health services in KZN Source.

Barnum and Kutzin's illustration (Figure 1) indicates the hierarchy of access to health care (Kutzin and Barnum Reference Kutzin and Barnum1992), with the base of the pyramid referring to home-based care. Individuals take care of their own health assisted by and through the support of community caregivers for preventative and promotive health and for disease screening and monitoring services (van Rensburg, Reference van Rensburg2014; Jobson, Reference Jobson2015; Singh et al., Reference Singh, Abdel Goad and Ramklass2015; Moodley et al., Reference Moodley, Cairncross and Naiker2016, Reference Moodley, Walter and Scott2018; Padarath et al., Reference Padarath, King and Mackie2016; Maree et al., Reference Maree, Moshima and Ngubeni2017; Momberg et al., Reference Momberg, Botha and Van der Merwe2017; Joffe et al., Reference Joffe, Ayeni and Norris2018; Lubuzo et al., Reference Lubuzo, Ginindza and Hlongwana2019; Neely and Ponshunmugam, Reference Neely and Ponshunmugam2019). From this point, if the health condition warrants further health intervention, the patient is referred to a primary healthcare facility and referred stepwise to other levels of care. In theory, this referral pathway ensures that patients receive care appropriate to their needs in the most cost-effective way. However, in the case of oncology services, the tertiary health services platform is provided at three hospitals only, two in Durban (DBN) [Addington Hospital and Inkosi Albert Luthuli Central Hospital (IALCH)] and one in Pietermaritzburg (PMB) (Grey's Hospital) (van Rensburg, Reference van Rensburg2014; Jobson, Reference Jobson2015; Singh et al., Reference Singh, Abdel Goad and Ramklass2015; Department of Health, 2017; Lubuzo et al., Reference Lubuzo, Ginindza and Hlongwana2019); where high care treatment is mostly done only at IALCH. Due to the lack of health education and screening of at-risk groups at the lower levels of care, patients are presenting to central and tertiary hospitals with advanced disease. By the time patients reach these facilities, it is too late, with their condition typically at the advanced stage (Mukansi et al., Reference Mukansi, Smith and Feldman2014; van Rensburg, Reference van Rensburg2014; Singh et al., Reference Singh, Abdel Goad and Ramklass2015; Winkler et al., Reference Winkler, Mangolo and Becher2015; Made et al., Reference Made, Wilson and Jina2017; Hesse, Reference Hesse2018; Joffe et al., Reference Joffe, Ayeni and Norris2018; Moodley et al., Reference Moodley, Walter and Scott2018; Lubuzo et al., Reference Lubuzo, Ginindza and Hlongwana2019).

In SA, establishing a healthcare system that places emphasis on coordination of patients’ care is important for the following reasons:

• • Current health care systems are often disjointed, and processes vary among and between primary care sites and specialty sites (Singh et al., Reference Singh, Abdel Goad and Ramklass2015; Moodley et al., Reference Moodley, Cairncross and Naiker2016, Reference Moodley, Walter and Scott2018; Tetteh and Faulkner, Reference Tetteh and Faulkner2016; Edwards and Greeff, Reference Edwards and Greeff2017, Reference Edwards and Greeff2018; Momberg et al., Reference Momberg, Botha and Van der Merwe2017; Bebington et al., Reference Bebington, Singh and Fabian2018; Joffe et al., Reference Joffe, Ayeni and Norris2018).

• • Patients are often unclear about why they are being referred from primary care to a specialist, how to make appointments, and what to do after seeing a specialist (Mayosi et al., Reference Mayosi, Flisher and Lalloo2009; Chatwin and Sanders, Reference Chatwin and Sanders2013; Mukansi et al., Reference Mukansi, Smith and Feldman2014; Carter-Harris et al., Reference Carter-Harris, Hermann and Draucker2015; Le Roux et al., Reference Le Roux, Urry and Sartorius2015; Singh et al., Reference Singh, Abdel Goad and Ramklass2015; Winkler et al., Reference Winkler, Mangolo and Becher2015; Cancer Support Community, 2016; Moodley et al., Reference Moodley, Cairncross and Naiker2016, Reference Moodley, Walter and Scott2018; Tetteh and Faulkner, Reference Tetteh and Faulkner2016; Urman et al., Reference Urman, Josyula and Rosenberg2016; Edwards and Greeff, Reference Edwards and Greeff2017; Forums, Reference Forums2017; Gaafar, Reference Gaafar2017; Maree et al., Reference Maree, Moshima and Ngubeni2017; Momberg et al., Reference Momberg, Botha and Van der Merwe2017; Bebington et al., Reference Bebington, Singh and Fabian2018; Hesse, Reference Hesse2018; Joffe et al., Reference Joffe, Ayeni and Norris2018; Lubuzo et al., Reference Lubuzo, Ginindza and Hlongwana2019).

• • Specialists do not consistently receive clear reasons for the referral or adequate information, owing to poor communication among the practitioners at different levels of care (Mukansi et al., Reference Mukansi, Smith and Feldman2014; Jobson, Reference Jobson2015; Le Roux et al., Reference Le Roux, Urry and Sartorius2015; Singh et al., Reference Singh, Abdel Goad and Ramklass2015; Winkler et al., Reference Winkler, Mangolo and Becher2015; Padarath et al., Reference Padarath, King and Mackie2016; Edwards and Greeff, Reference Edwards and Greeff2017; Momberg et al., Reference Momberg, Botha and Van der Merwe2017; Moodley et al., Reference Moodley, Walter and Scott2018; Lubuzo et al., Reference Lubuzo, Ginindza and Hlongwana2019).

• • Health providers involved in the care of patients deal with many different processes and incomplete patient information, which means that care is delayed and less efficient (Mukansi et al., Reference Mukansi, Smith and Feldman2014; Jobson, Reference Jobson2015; Le Roux et al., Reference Le Roux, Urry and Sartorius2015; Singh et al., Reference Singh, Abdel Goad and Ramklass2015; Winkler et al., Reference Winkler, Mangolo and Becher2015; Padarath et al., Reference Padarath, King and Mackie2016; Edwards and Greeff, Reference Edwards and Greeff2017; Momberg et al., Reference Momberg, Botha and Van der Merwe2017; Moodley et al., Reference Moodley, Walter and Scott2018; Lubuzo et al., Reference Lubuzo, Ginindza and Hlongwana2019).

Definitions of care coordination and related terms

The reference to the concept of “care coordination,” is often made in the health services literature, but is less frequently clearly defined (McDonald et al., Reference McDonald, Sundaram and Bravata2007). Care coordination creates the conditions and ongoing relationships to support seamless interactions among multiple providers, within interdisciplinary teams, or in care settings or sectors. A comprehensive review of the literature on care coordination (McDonald et al., Reference McDonald, Sundaram and Bravata2007) has identified more than 40 different definitions of care coordination, capturing five key components as described below (McDonald et al., Reference McDonald, Sundaram and Bravata2007):

1. 1. Numerous participants are typically involved in care coordination: Patients, family caregivers, physicians, nurses, pharmacists, social workers, other professionals, and support staff are often involved in the provision of healthcare services (Forrest et al., Reference Forrest, Glade and Baker2000; Coleman, Reference Coleman2004; Hack et al., Reference Hack, Degner and Parker2005; Coleman et al., Reference Coleman, Parry and Chalmers2006; Department of Health and Human Services, 2007; Abraham et al., Reference Abraham, Kannampallil and Patel2011; Aberg et al., Reference Aberg, Albrecht and Rudolph2012; Cancer, Reference Adewole, Denny and Odedina2013; Brouwers et al., Reference Brouwers, Vukmirovic and Tomasone2016; Gill, Reference Gill2017). As care needs become more complex, the number of potential participants and their relationships tends to increase.

2. 2. Coordination is necessary when participants are dependent upon each other to carry out disparate activities in a patient's care: Coordination for patients with complex healthcare needs often involves multiple participants who individually provide specialized knowledge, skills, and services, and who together potentially provide a comprehensive, coherent, and continuous response to a patient's unique care needs (Research, 2004; Santoso et al., Reference Santoso, Engle and Schaffer2006; Battaglia et al., Reference Battaglia, Roloff and Posner2007; Baughan et al., Reference Baughan, Keatings and O'Neill2011; Meade et al., Reference Meade, Wells and Arevalo2014; Carter-Harris et al., Reference Carter-Harris, Hermann and Draucker2015; Jobson, Reference Jobson2015; Maree et al., Reference Maree, Moshima and Ngubeni2017; Bray et al., Reference Bray, Ferlay and Soerjomataram2018).

3. 3. In order to carry out these activities in a coordinated way, each participant needs adequate knowledge about their own and others people's roles and available resources: In order to make appropriate and timely medical decisions, role players in patient care activities require information about available resources (Fletcher et al., Reference Fletcher, O'Malley and Fletcher1984; Chen et al., Reference Chen, Brown and Archibald2000; Forrest et al., Reference Forrest, Glade and Baker2000; Coleman, Reference Coleman2004; Department of Health and Human Services, 2007; Freijser et al., Reference Freijser, Naccarella and McKenzie2015). Effective coordination depends on adequate knowledge about roles and interdependencies among participants (Rico et al., Reference Rico, Manzanares and Gil2011), and ways to reduce system weaknesses and barriers through “bridging gaps” in information flow (Battaglia et al., Reference Battaglia, Roloff and Posner2007; Freeman, Reference Freeman2012; van Sluisveld et al., Reference van Sluisveld, Zegers and Natsch2012; Meade et al., Reference Meade, Wells and Arevalo2014; Bradley et al., Reference Bradley, Taylor and Cuellar2015; Carter-Harris et al., Reference Carter-Harris, Hermann and Draucker2015).

4. 4. In order to manage all required patient care activities, participants rely on exchange of information: Many of the definitions and studies of coordination interventions describe the essential role of exchange of critical patient-related information to facilitate effective coordination and medical decision-making (Starfield et al., Reference Starfield, Simborg and Horn1976; Fletcher et al., Reference Fletcher, O'Malley and Fletcher1984; Allred et al., Reference Allred, Arford and Michel1995; Forrest et al., Reference Forrest, Glade and Baker2000; Parchman et al., Reference Parchman, Noel and Lee2005). Several studies have found that referring clinicians and specialists exchange information infrequently (Forrest et al., Reference Forrest, Glade and Baker2000; Mangione-Smith et al., Reference Mangione-Smith, Schonlau and Chan2005) and in non-standardized ways that may have adverse consequences on patient care (Bickell and Young, Reference Bickell and Young2001).

5. 5. Integration of care activities has the goal of facilitating appropriate delivery of healthcare services: While approaches to coordinating care may vary greatly, the general intent of these strategies is to facilitate delivery of the right healthcare services in the right order, at the right time, and in the right setting (Starfield et al., Reference Starfield, Simborg and Horn1976; Fletcher et al., Reference Fletcher, O'Malley and Fletcher1984; Forrest et al., Reference Forrest, Glade and Baker2000; Bickell and Young, Reference Bickell and Young2001; Sprague, Reference Sprague2003; McDonald et al., Reference McDonald, Sundaram and Bravata2007, Reference McDonald, Schultz and Albin2014; Walsh et al., Reference Walsh, Harrison and Young2010; Rico et al., Reference Rico, Manzanares and Gil2011; Walsh et al., Reference Walsh, Young and Harrison2011; Schultz et al., Reference Schultz, Pineda and Lonhart2013; Freijser et al., Reference Freijser, Naccarella and McKenzie2015; Brouwers et al., Reference Brouwers, Vukmirovic and Tomasone2016; Forums, Reference Forums2017; Gorin et al., Reference Gorin, Haggstrom and Han2017; Agency for Healthcare Research and Quality, 2018; Hannigan et al., Reference Hannigan, Simpson and Coffey2018; Miesfeldt et al., Reference Miesfeldt, Feero and Lucas2018; Weaver and Jacobsen, Reference Weaver and Jacobsen2018; World Health Organization, 2018a; Rural Health Information Hub, 2016).

Lastly, a care coordination approach needs to take into consideration the whole of the health system so that patients have access to a range of services, including dependable service providers who are members of a multidisciplinary team, services that are consistently available, and services that are flexible enough to meet their needs (Department of Health and Human Services, 2007). Care coordination aims to bridge the gaps that often occur when patients move from one point of care to the other. Three main groups [patients/family, healthcare professionals (primary and specialty care), and systems] have a stake in care and may share different perspectives on the success of various interventions.

Other additional terms relating to care coordination are healthcare entities and points of transition and their definitions are presented below (McDonald et al., Reference McDonald, Schultz and Albin2014):

• Healthcare entities are discrete units of the healthcare system that play distinct roles in delivery of care. The context and perspective determine precisely which those units are.

• Points of transition are the transitions that occur when information about or accountability/ responsibility for some aspect of a patient's care is transferred between two or more healthcare entities or is maintained over time within one entity. Often information and responsibility are (or should be) transferred together.

It may be useful to think about two broad categories of transitions, namely transitions between entities of the healthcare system and transitions over time:

Transitions between entities of the healthcare system refer to information transfer and/or responsibility shifts (McDonald et al., Reference McDonald, Schultz and Albin2014):

• • among members of one care team,

• • between patient care teams,

• • between patients/informal caregivers and professional caregivers,

• • across settings, and

• • between healthcare organizations.

On the other hand, transitions over time are about the information transfer and/or responsibility shifts (McDonald et al., Reference McDonald, Schultz and Albin2014):

• • between episodes of care (i.e., initial visit and follow-up visit) and

• • across trajectory of illness and changing levels of coordination need.

Cancer care coordination complexities

Although it is widely recognized that better coordination of cancer care holds considerable potential to improve patients’ experience of care and their outcomes, attempts to improve cancer care coordination are hindered by a lack of clarity in its definition and what “care coordination" actually encompasses (McDonald et al., Reference McDonald, Sundaram and Bravata2007; Walsh et al., Reference Walsh, Harrison and Young2010; Walsh et al., Reference Walsh, Young and Harrison2011; McDonald et al., Reference McDonald, Schultz and Albin2014; Freijser et al., Reference Freijser, Naccarella and McKenzie2015; Forums, Reference Forums2017; Miesfeldt et al., Reference Miesfeldt, Feero and Lucas2018; Weaver and Jacobsen, Reference Weaver and Jacobsen2018). A qualitative study was undertaken in 2011, to explore the views and experiences of key stakeholders to identify the key components of cancer care coordination in Australia (Walsh et al., Reference Walsh, Young and Harrison2011). Seven key components were identified: (a) organization of patient care, (b) access to and navigation through the healthcare system, (c) the allocation of a key contact person, (d) effective communication and cooperation among the multidisciplinary team and other health service providers, (e) delivery of services in a complementary and timely manner, (f) sufficient and timely information to the patient, and (g) needs assessment (Walsh et al., Reference Walsh, Young and Harrison2011). The components of cancer care coordination identified provided an empirical basis for the development of interventions to improve this aspect of cancer care (Walsh et al., Reference Walsh, Young and Harrison2011).

Achieving well-coordinated care for cancer patients is a complex process. Based on the literature, there are three distinct but overlapping types of continuity described in the health literature and these are (Department of Health and Human Services, 2007):

• Strengthening information sharing — where links are made between care providers and between healthcare events,

• Improving cancer service delivery — where services are delivered in a complementary and

• timely manner (such as shared treatment protocols), and

• Building relationships — where links are made between past, current, and future care (such as an agreed key contact for patients).