Study | Study design | Findings (Barriers) | ||||||
---|---|---|---|---|---|---|---|---|
Methodology & sampling | Country | Ethnicity | Participant group | Number of participants | Healthcare provider and system factors | Patient factors | Disease factors | |
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 |