Table 1 Characteristics and results of studies relating to barriers to lung cancer diagnosis

Sharf, Stelljes & Gordon (2005) [35]

M: qualitative

(interviews)

S: Hospital - participants recruited through pulmonary conference for ongoing cohort study, and review of pathology reports

United States

Not reported

Patients

9

Inadequate information provided to patients; i.e. regarding what to expect in relation to the disease and treatment; Lack of established relationship between physician and patient; discontinuity of care; long waiting times.

Patients took action to improve their suspected lung problems or health in general on their own, as an alternative to physician’s recommendations; Patients minimizing risk factors, possibility of a cancer diagnosis, or severity of illness. Patient relies on positive experiences with illness or treatment experienced by self or others; Fatalism and faith: patient’s emphasis on the importance of powers that outweigh self-control, i.e. fate or God; Patient’s distrust and suspicion of health information, medical procedures, motives of doctors or other health authorities. Patient focuses on negative experiences and expectations, past, present and future; Patient’s capacity or desire to live without knowing their diagnosis; Patient’s denial or questioning of the utility of treatment or procedure; Patient postponing treatment or delays seeking medical treatment after self-recognition of symptoms; Patient wanting to avoid pain or discomfort caused by medical procedures; Patient prioritizing his/her remaining quality of life; patient not being able to afford private insurance, thus limiting options for seeing specialists and obtaining medications.

Tod et al. (2008) [11]

M: qualitative

(interviews)

S: community & hospital - respiratory physician and lung cancer nurse specialists

United Kingdom

Not reported

Patients and survivors

20 (18 patients, 2 survivors)

Media messages interacting with cultural tendencies to reinforce the belief that people should not use primary care services unless a problem was extreme.

Tendency to attribute symptoms to other acute and chronic conditions; Patient’s poor knowledge and awareness of lung cancer risks, symptoms and treatments; fatalistic beliefs and fear of death and cancer diagnosis (due to lack of awareness of lung cancer treatments); Patient’s fear of a medical consultation and being seen as a timewaster further prompted delay; previous bad experiences; Non- or ex-smokers delayed in reporting symptoms because of an expectation, based on previous experience, that they would be stigmatized as a smoker and blamed for their illness; patient placing great value on stoicism, not complaining and “putting on a brave face”; Lifelong patterns of poor healthcare utilization resulted in patient’s reluctance to see a GP unless symptoms were severe.

Symptom experience: wide variation in symptoms and therefore lack of a clear symptom profile.

S. E. Hall et al. (2008)^a [29]

M: qualitative

(interviews)

S: cancer notifications in Western Australia Cancer Registry

Australia

Not reported

Patients and GPs

41 (14 patients)

Quality of care: quality of communication from and between care providers and communication skills in general.

Misinterpretation or minimization of symptoms; financial aspects of cancer care (rural patients); transport costs and time.

Smith et al. (2012)^a,b [26]

M: qualitative

(focus groups)

S: General Practice and ‘Breathe Easy’ group - specialist lung cancer nurses

Scotland

Not reported

Patients, families, GPs and other service providers (psychologists, sociologists, respiratory physician, health services researcher)

7 patients (plus spouses/partners)

Difficulty in making appointments due to lack of advice on making appointments and exactly what to ask when contacting GP; lack of involvement of the entire GP team in the process (e.g. receptionist as first point of contact, triage by practice nurses, GPs)

Emery et al. (2013)^c [30]

M: mixed methods

(medical records & interviews)

S: rural cancer nurse coordinator, Cancer Registry and treating clinician

Australia

Not reported

Patients

66 (8 lung cancer patients)

Distance to health care

Misinterpretation or minimization of symptoms; low risk perception; stoicism (particularly of men)

Symptom experience

Walton et al. (2013) [36]

M: qualitative

(interviews and focus groups)

S: Hospital -primary physician and hospital physician

New Zealand

New Zealand European, Māori

Patients and family members

39

Access to services - patient getting delayed in the system (hospital booking systems, difficulties faced by GPs in obtaining referrals for specialists, schedule inflexibility, workforce issues etc. - as opposed to an expedited entry into secondary care via presentation of severe symptoms at ED); perceived time pressure in consultations and lack of GP continuity leading to ineffective communication; GP’s lack of knowledge about interpreting symptoms and accessing the appropriate pathways; regional differences to access in services (specialist numbers, distance to medical centre); GPs’ nihilistic attitude towards lung cancer; lack of respect for and openness to other (indigenous/ ethnic minority) worldviews; lack of cultural competence and interpersonal skills

Misinterpretation or minimization of symptoms; smoking beliefs and health expectancies (many felt respiratory symptoms and generalized ill-health were the norm for smokers, or others felt that protective behaviours e.g. exercise, diet could offset health risk); individual beliefs about cancer (denial of risk, avoidance of unpleasant knowledge, shame about smoking, fears about treatment and fatalism that cancer treatment will have little benefit)

Symptom experience: lack of symptom presentation

Birt et al. (2014)^d [10]

M: qualitative

(interviews)

S: Hospital – email invitation sent to patients referred via urgent, routine and diagnostic routes

England

“white” and other

Patients (with lung cancer diagnosis and other respiratory conditions)

35 (17 lung cancer patients)

Limited access to healthcare

Misattribution of symptoms; self-management of symptoms; inability to communicate symptoms/condition; competing responsibilities

Symptom experience: co-morbidities masking respiratory changes, difficulty in recognising symptoms.

Scott, Crane, Lafontaine, Seale & Currow (2015)^a [31]

M: qualitative

(interviews)

S: lung cancer support networks

Australia

Not reported

Patients and GPs

30 (20 patients)

Increased societal awareness of lung cancer as smoking related and being the ‘fault of the individual’ (increases stigma).

Views of lung cancer as a ‘death sentence’ and severe health consequence of smoking (as portrayed in some anti-smoking messaging) meant that patients were hesitant to seek medical advice for symptoms; anticipation of stigma and blame from health professionals and general community.

Black et al. (2015)^)c [27]

M: qualitative

(interviews)

S: EDs – member of the clinical team

England

“White British”

Patients

27 (4 lung cancer patients)

Health care professional’s appraisal leading to patients re-evaluating their symptoms inappropriately (e.g. lung cancer misdiagnosed as asthma)

Page, Bowman, Yang & Fong (2016)^a [32]

M: qualitative

(interviews)

S: flyer, approaching people on the street, local meetings, places of employment, community centres, and snowballing

Australia

Aboriginal and Torres Strait Islander peoples

Patients, indigenous health workers and community members

67 (2 patients)

Lack of (public or private) transport to specialist health care; cost incurred in accessing care

Wagland et al. (2016) [28]

M: mixed methods

(questionnaire, clinical records review and interviews)

S: GP practices – participants identified via questionnaire mailed to them

England

“White”, mixed, “Black/Black British”, “Asian/British Asian”, Chinese, other

Patients

908 (38 patient interviews)

Difficulty accessing appointments and time wasted in waiting rooms

Participants’ ‘wait and see’ attitudes towards most symptoms; guilt for symptoms perceived as self-inflicted; fear among patients for wasting GP’s time; patients not fully reporting true smoking habits or symptoms

Caswell et al. (2017) [12]

M: qualitative

(interviews)

S: Hospital – participants identified through previous phase of project (not reported in this paper)

England

Not reported

Patients and carers

23 (13 patients, 10 carers)

Lack of in-depth knowledge of lung cancer signs and symptoms - GP inability to recognise symptoms and thus attributing symptoms to other conditions

Patient’s inability to recognise symptoms as pertaining to lung cancer

Symptom experience

Murray et al. (2017) [33]

M: qualitative

(interviews)

S: General Practice – computerized records

Australia

Not reported

Patients

20

GP communication: leading to a lack of established trust between GP and patient; GP not understanding or relating to addiction and thereby diagnosis; GP lecturing

Patient’s fear and fatalism; symptom normalisation; smoking-related guilt and stigma; past GP experiences (patients being put off by perceptions of lecturing or reprimanding to cease smoking); perception of miscommunication between patient and GP (not understanding diagnosis)

Rankin et al. (2017)^a [34]

M: qualitative

(interviews and focus groups)

S: Hospitals – treating clinicians including pulmonologist, medical oncologist, or nurse coordinator

Australia

Not reported

Patients and GPs

30 (19 patients)

Lengthy period of time before GPs took patient concerns seriously; lengthy time intervals between diagnosis and treatment commencement; geographical location (distance) of regional health care services/GPs; lack of psychosocial support for both patient and family member(s)

Patient’s financial status