Thirty-six potential participants were approached and 19 agreed to take part. Fourteen were phone interviews, and five were face-to-face. Participant characteristics are provided in Table 1. This sample is largely representative of the region’s lung cancer patient population and included patients with different stages of lung cancer as well as patients from urban, regional and rural areas.
Table 1
Characteristic | Number |
Median age in years (range) | 64 (52–82) |
Gender Male Female | 10 9 |
Residence: Urban Regional Rural | 12 4 3 |
Stage of cancer Early stage (curative) Late stage | 9 10 |
Type of lung cancer Non-small cell lung ca Small cell lung ca | 16 3 |
Present for Interview Patient only Carer only Patient and carer | 12 2 5 |
Initial presentation GP Emergency Department Other specialties | 8 8 3 |
Data analysis identified four major themes and several sub-themes, which are depicted in Table 2. The themes were inter-connected (Fig. 2 as supplement).
Table 2
summary of codes, themes and sub-themes:
codes | Themes | Sub-themes |
communication | Quality of Communication from HCPs affect patient and carer satisfaction | Information needs vary between patients |
Information |
comprehension | Both content and type of information from HCPs are important |
Improper communication causes distress |
Initial consultation | Taking patient concerns seriously during initial consultations |
Delays | Delays cause significant anxiety and distress | Variation in presentations, referral pathways and timeliness |
Timeliness | Perceptions, causes and impacts of delays |
Uncertainty about is a cause of anxiety |
Investigations |
Distress |
family | Advocacy, Support and Coordination improves patient/ carer experience | Patient advocacy by HCPs, family and friends |
support | psychosocial support for patients and carers |
System issues | Co-ordination of care |
satisfaction | Multiple factors influence overall satisfaction with care | Participants’ impression of referral pathway |
difficulties | Suggestions for Improvement |
comments |
Quality of communication from the health care providers (HCPs):
When participants were asked about the quality of communication, they commented on various aspects like the clarity of information, willingness to answer any questions, being knowledgeable, and using pictures and diagrams.
‘It has been quick; it has been easy, it has been… lots of communication. Communication has been great….Yeah, like every doctor we've ever had has always been willing to answer anything I've wanted to know, like even if it's just the tiniest little question…”(58, female, urban).
“He was pretty upfront, he said it me that it was um… that they had found a mass. He said a picture paints a thousand words, so he actually showed me my x-rays, and showed me how one third of my left lung had collapsed, and showed me the mass that was on my lung.” (52, female, urban)
Having other family members accompanying them during medical consultations general improved patients’ feelings about comprehension. One elderly indigenous patient did not understand English very well and had help from family in translating all the information.
Information needs varied among the participants, with some of them expecting detailed information, while others were satisfied with minimal information. One patient explained how he used the internet to learn more about the cancer and treatments. Many patients and their carers were happy with whatever decisions their GP or specialist recommended to them, as they felt that the professionals knew what they were doing. But, one carer felt overwhelmed with information provided by the specialist. The main concern of many patients was knowing prognosis and how long they potentially have left to live.
"I suppose because I don't know anything medical, ……… I don't wanna see pictures, I just wanna get on with it. I just wanna get told what I have to do to get this over and done with." (55, female, urban)
Improper communication from clinicians caused distress to some participants. Few patients were informed of the lung cancer diagnosis and prognosis over the phone by specialists. One of them had not seen the patient previously, had a difficult accent and did not offer any time for the patient or his wife to ask any questions. Another patient felt that the specialist was not aware of all the results before the consultation.
“All of a sudden it went from I'm getting no information; I'm getting information that is unexpected, uncontextualized and not given in a format where I have the opportunity to understand or ask questions.” (61, male, urban)
Timeliness was an important factor for patients and their carers:
Eight participants reported that all stages of their referral pathways took place in a timely manner. But, nine participants expressed that it took too long for the GP to acknowledge their condition and arrange for necessary investigations. Out of these, five participants had pre-existing chronic lung disease and two participants were mistakenly diagnosed with benign conditions. Many patients felt that since their GPs did not take their symptoms seriously during initial consultations, their diagnosis and treatment were delayed.
“But I’m a bit annoyed about the practice I went to in (a regional town) that wasn’t followed up earlier. back to my GP was all different doctors, and I think in the beginning I think that they should have investigated it further”. (75, female, regional town)
Five patients had to present to the emergency department with severe symptoms and hence were referred directly to respiratory specialist. Two patients felt that their diagnosis was delayed because they lived in a regional/rural area. They reported that they did not have a regular GP as there was a frequent turnover of GPs. Some regional towns had specialists but waiting times for a specialist appointment was much longer than metropolitan areas.
“I mean my tumour was 6cm when it was eventually diagnosed at the [metropolitan hospital] a week later. And um, it couldn't grow just in a minute, it had to have been there for a least a long, quite a good time…”. (72, female, regional town)
In contrast to those with perceived delays, one participant reported that everything was too rushed, and they did not have time to comprehend what was going on.
Participants expressed that the experience of uncertainty was hard to handle and was a cause of distress. Many patients/carers reported that they lived in fear while waiting for diagnosis. A few patients felt that the delays caused their tumours to grow while they were waiting, which led to worse outcomes. One patient reported contemplating not having any further investigations as he was frustrated with the perceived delays.
“And it was just near the end that I felt like oh my god please can we get something going, because I was really well aware of the fact there was really something there then, and I just wanted something to start”. (63, female, regional town)
Patient advocacy, psychosocial support, and care co-ordination during the referral process:
Although most participants were content with the management advised by their GPs, some of them demanded investigations and specialist referrals. One of the carers, who was a retired nurse, requested an urgent chest x-ray for her husband who was being treated for pneumonia. Participants also spoke positively about experiences where they perceived that their HCPs advocated for them to access a needed resource or to connect them with another HCP.
“It wasn’t severe, just in the back of my mind being a nurse, I thought no let’s clarify that. And it was me that persevered with our GP to say look he needs an x ray, the second time I went with him and insisted. And he had one and obviously I’m very glad he did.” (carer, female, urban)
Although most of the patients did not have access to cancer care coordinators, one patient reflected that her appointments were made quicker with the help of a care coordinator. Two participants who live in regional areas would have preferred all their appointments early in the morning, so that they could drive back home on the same day. Sometimes, a breach in continuity of care happened when patient was transferred from one hospital to another.
“Then I got handed over to a number of other doctors. And um… yeah so come November when it all finished, there was no indication of appointment follow-ups or scan or anything. And that’s where they fell down there a little bit.” (62, male, urban)
Many patients and carers received good support from next of kin and friends. They received valuable emotional, financial, and practical support at home and while accessing health care. Although we did not explicitly ask the participants about referral for psycho-social services, one carer mentioned receiving help from a support worker in taking the patient to appointments.
“I’m his carer, but we do have a support worker that started in the last few years, because things were getting a bit much for me in the way of heavy work and things. I’ll go to the doctors’ meetings in the morning, and then I go and do what I need to do while [name] stays with him.” (carer, female, urban)
Satisfaction with the referral pathway depended on multiple factors:
Nine of the participants reported that they were very satisfied with their referral process. Despite being a difficult time, they felt that they had the best possible care and could not suggest any improvements. Three participants and their carers were not satisfied with the referral process and suggested improvements. One of them felt that it was important to have continuity of their management and one specialist who will communicate with them all the time and who can be trusted and understood. Although most patients were satisfied with how the public health system works, one patient mentioned that she had bad experiences in public hospitals previously. Using telehealth consultations improved satisfaction for regional/rural patients, with a preference for video link rather than telephone expressed.
“The whole hospital has been great. The nurses at the CT scan and the radiology and everything like that, they’re all lovely people.” (67, male, urban)
“Unless it’s like remote telemedicine or whatever, and then do it on a video link, do not do it just on a god damn mobile phone” (61, male, urban).