2.1. Background Infrastructure

The study is set within the Haematological Malignancy Research Network (https://www.HMRN.org), which was initiated in 2004 to generate evidence to inform clinicians, researchers, and patients. Details of HMRN’s configuration, methods, and ethical approvals are published elsewhere [4, 35]. Briefly, covering a catchment population of ∼4 million people with a similar socio-demographic profile to the UK as a whole, care within HMRN is provided across the haematology departments of 14 hospitals, all of which adhere to national treatment guidelines. Blood cancer patients enter the cohort at diagnosis (∼2,400 each year) and have clinical data collected from their medical records. With respect to patient and public involvement (PPI), patients co-developed this study and were co-applicants within the funding process; they were also members of the steering committee and commented on our paperwork and findings. Ethical approval was secured via London, City and East Research Ethics Committee (REC:16/LO/0740).

2.2. Identification of Interviewees and Sampling Strategy

Participants who had agreed to further contact via the HMRN consenting processes were invited to take part. The sampling strategy was purposive, aiming to identify “information-rich” sources who could provide data that were relevant to the study [36], and a preliminary frame was developed to manage this process. Initial criteria included a diagnosis of CLL, FL, MZL or myeloma, and proximity to the median diagnostic age for each subtype. Later variation was introduced by sex and time since diagnosis so that experiences at diagnosis, observation, progression, and treatment could be captured. Interviews continued until data saturation was reached [37].

2.3. Consent and Interview

After checking with NHS teams that patients were well enough to participate, selected individuals were sent an information sheet and asked to contact the study team if they wanted to take part. Respondents were informed that they could invite a relative/friend to join the interview if they wished. Interviews were conducted from February to October 2019, at a time and place chosen by the patient (mostly their home). Participants were assured of confidentiality and data security, and informed written consent was obtained (verbal from relatives). Interviews were conducted by an experienced researcher (DM), lasted 60–90 minutes and were digitally audio-recorded. Patients were asked to tell their story in their own words from diagnosis, with a topic guide used to cover areas of interest (Online Resource 1). Recordings were transcribed, checked, corrected, and anonymised by the interviewer.

2.4. Analysis

Data analysis was conducted by two members of the team (DM, DH), who drew on qualitative description, a minimally theorized method that is particularly relevant to practitioners and policy makers [38]. Interpretation involved thematic content analysis [39], which began with familiarization and engagement with the data by analytical, critical reading, rereading, and annotation of the transcripts, while attempting to interpret the accounts. This was followed by an iterative process of generating meaningful codes. Next, we searched for and grouped similar codes into themes, which were reviewed within a thematic map, before being defined and named. Verbatim quotations are presented through the results section, enabling participants to “speak for themselves” about their experiences, with the themes providing insights into “what is going on” [39].

3.1. Shock Affects Ability to Process Information

Interviewees talked about their experiences of receiving information at key points, often when they were feeling particularly emotional (e.g., diagnosis, progression, and treatment) and experiencing shock, which could be overwhelming. Unsurprisingly, this was said to create a barrier to processing information and impede the ability to “take information in” (P16), with P21R noting “you’re just sat there going [nodding] and then you come out, “Oh, what was all that about?.” In relation to their diagnosis, patients said, “I just shut down…I couldn’t process it…the nurse explained everything, but it didn’t go in” (P8); “my brain was just not computing it” (P13). When explaining this response, P2 said that it was due to hearing the words “cancer (and) chemotherapy,” while P13 said that it was particularly connected to the term “leukaemia.”

Shock was also said to impact on the ability to request information and formulate questions, with P17 not asking anything at diagnosis, as she was “taking in information”, and P16 saying, “your brain is working on so many different levels,” including worrying if the cancer was life-threatening and how this would impact future finances. P4 reported being “in no state to ask questions,” and P8 stated that she “didn’t know what to ask.” Others said that it was only later that information was absorbed, with P13 saying that it was the next day that “things started to kind of slot into place and (then) your brain works overtime.” P18 described HCPs who seemed to be “pushing (information) at you,” while P6R would have preferred time to let the diagnosis “sink in” and discuss it with others, before returning to clinic with questions. These issues are clearly demonstrated in Case Study—Part 1.

3.2. The Importance of Time to Facilitate Information Exchange

Time was considered an important factor in relation to understanding the unusual nature of chronic blood cancers, and this impacted on the ability of patients and relatives to share and retain information, as well as ask questions. Many patients said their clinicians made every effort to provide adequate time for meaningful appointments: “Time was never a problem” (P16); “I never feel rushed during consultations” (P11); “Time pressure? Oh no, never thought that ever…they always say, is there anything else you want to know? They don’t rush you…they’re not trying to get you out’ (P31). Similarly, P28 said his consultant gave him “all the time in the world,” and the opportunity to ask further questions, and P12 said, “there’s no shortage of time if you want to ask a question.” Sufficient time was said to facilitate information sharing as it enabled HCPs to check patients had understood the material discussed, with P27 reporting how his consultant “always asks if there’s any questions,” while P11’s doctor was said to ask: “…do you understand…is there anything you are uncertain about…let’s go through it…point you in the right direction…”

A minority, however, described a clear lack of time, which they perceived as a barrier to information exchange. P4, for example, reported not having a chance to discuss treatment with a nurse, and P23 described wanting “more information from the specialists” but not having the opportunity to meet with a nurse because they were “so busy, just so busy.” While some said there was only enough time at the initial appointment to receive “basic information” (P6R), others corroborated this saying they needed to search for detailed information online themselves (P12).

Participants appeared acutely aware of time pressures in busy clinics, with P34 saying “I know (doctors have) a limited amount of time (and) when I sit there in the clinic waiting… and it is a big wait and I sometimes think, well I want to make this pretty quick because I don’t want to take up loads of their time.” Even when consultants did not rush them, patients were aware of time, with P13 saying “I’m always mindful of other patients waiting.” More specifically, with regard to asking questions, P32 said “I should have asked that question, but they (doctors) were that far behind time, you know, that comes into it then….” Conversely, regarding requests for information, P28 said that HCPs always took time to answer questions, no matter how busy the clinic, so he never felt “Oh, I won’t ask that question because there’s a load of people waiting.”

3.3. Personal Relationships Have an Impact on Meeting Information Needs

Given the potentially prolonged nature of chronic blood cancers, patients often described attending hospital and seeing the clinical team over extended periods of time. As a result, they talked in detail about their relationships with HCPs and how these could deter or facilitate information exchange. Many described their doctors and nurses positively, using phrases such as “understanding,” “gentle and sensitive,” “brilliant and lovely,” or “very approachable.” They were often complimentary about how HCPs had spoken to them and their relatives at various timepoints on the pathway: “the first thing (doctor) said was “we are going to be able to help you” and that was a big reassurance…we’re not just a commodity” (P17); “warm, pleasant, smiling, we have a laugh…you come away…feeling elated rather than “phew”” (P10). They also demonstrated feelings of affection, with P33 saying she “loves (her consultant) to pieces”: “I’d hug him and stuff… he’s lovely.”

Such good quality trusting relationships were said to facilitate information sharing, with P25 explaining that “to open up to someone, you’ve got to know them” and P28 also saying “you have to get to know the consultant before you can have a decent conversation.” In comparison, others were concerned that their doctors did not know them, with P33 saying “understudies or whatever you call them, they didn’t know enough, about me”, and with respect to communicating bad news, P2 said “they have no idea who I am and they’re trying to tell me things…I want somebody who can tell me because I know and trust them.”

The trust required for effective information exchange was considered harder to establish with HCPs who were considered “dismissive” or “gruffer or more dogmatic.” One relative, for example, described a poor relationship with a doctor who was considered “stand-offish” (P27R). However, not everyone considered the absence of easy rapport a barrier to information sharing. P7, for example, described his doctor as “aloof,” yet technically “brilliant,” and someone who “gives you the facts,” which he preferred above all else.

Patients described relationships with their HCPs as developing over time, alongside improved communication. P18, for example, noted that clinical staff intentionally tried to avoid overwhelming him with material initially, but that more was shared as they got to know each other better. Similarly, P26 described being “daunted” by her consultant’s manner at first, as he appeared “detached” and “a little bit severe,” but considering him “a different person” as she got to know him, which caused her to think that clinicians may have to “adopt a persona” in order to give bad news. Strong relationships did not always develop, however, as was the case with P25, who went on to say that “(doctors) could treat you a little more like a person…(with) a life outside hospital…a human being with feelings….”

Continuity of care from known HCPs was considered vital for developing the trust with particular individuals that was needed to facilitate information exchange. P8, for example, communicated a desire to see “their” doctor, P30 knew the name of “his” nurse, and P29 was “very happy” knowing that she could ring her “dedicated haematology nurse,” who would provide “brilliant information.” Conversely, lack of continuity (“it is just that busy…you just see who’s available,” P32) was said to impede information sharing, with P25 describing how she sees a different doctor each time and feels like “just a number.”

3.4. HCP Interpersonal Skills Are Central to Good Information Sharing

In the context of prolonged, often complex future trajectories, the HCPs’ attitude and ability to establish rapport was considered important, with P27 saying that he was reassured that he immediately “gelled” with his haematologist and was disappointed if he saw someone else, and P21R noting “we love (consultant)…a totally approachable guy…very laid back….” Other preferred attributes were “friendliness, interest in people, a sympathetic attitude… (P29), “not all hoity-toity” (P25), and having “a positive attitude” (P10). Similarly, P18 described feeling “on the same wavelength” as his haematologist, who “talked as if having a chat,” which made him feel comfortable. In addition, patients said “compassion” (P10) was important; that it was crucial to appreciate the emotional impact that living with a chronic cancer “24/7” (P10, P6) may have; and that “Plenty of empathy… makes a difference.” Empathy was not always perceived, however, with P4 describing the CNS present at her diagnosis as lacking this quality, highlighting that staff should bear in mind that “it is (CNSs) job every day… but for each (newly diagnosed patient) it is something new.”

Another highly appreciated attribute was the ability to respond to humour during conversations, with P25 saying “a bit of humour goes a long way”; P34 noting that a trait valued in his haematologist was that “…he was funny…” and P25R liking that their doctor “…can take a joke, (and is) witty.” A confident approach to imparting information was also appreciated, with P25 describing one haematologist as “embarrassed” to provide “difficult” information which made the patient feel awkward: “it was very hard for her, and I didn’t really want it to be hard for her, so I just tried to be quite cheerful and say, “oh no, no tell me, that’s alright.” This was compared to a current doctor, who “didn’t mind giving me information…enjoyed talking all the ins and outs of it and telling me all about it. He was quite nerdy which I quite liked (laughs)…any question I asked he just told me instantly.”

Having the ability to talk to people as equals and adapt information to individual needs and preferences (e.g., for certain treatment types) was considered important. P33, for example, noted how her doctor never made her feel like “just a number…” saying: “he explains things, even though he’s very knowledgeable and the main man, and high (up)…he never makes you feel inferior. I feel like I could ask him…can you explain that?” P34 said a trait he appreciated in his consultant was their ability to “talk to you like you’re a person and not just a patient.” This doctor had also individualised their approach by directing the patient in an information leaflet, saying “Oh, yeah, you don’t need to read this; (but do) read this bit.” Responding to preferences for specific information, P24 described how his doctor shared the NHS computer screen, so they could view and discuss his blood results together.

Listening skills were also highly valued, with P29 describing HCPs: “giving time for people to actually speak…to think about things before they ask (further) questions…listening is at the top of the list.” Similarly, P27 described how his consultant asks him a question then waits for reply, which made him “feel you can tell him what you want to tell him.” This ability was sometimes appreciated over other attributes, with P18, for example, describing his consultant as “not a natural communicator,” but nonetheless, “a good listener (who) is absolutely fine to communicate with (and) gives you space and time….” Nonverbal skills were also considered important, with the demeanour of HCPs also noted by patients: “if I can see nurse smiling… everything will be fine” (P13).

Other important factors included adequate HCP preparation for consultations, as such behaviour made patients feel like their doctors knew them as individuals, were aware of their prior experiences (e.g., tests and treatments), the impact of these, and patient preferences. Dislike was expressed for HCPs who overfocused on computer equipment during consultations, with P28, for example, describing how their doctor looked at the screen throughout his initial consultation while talking to him, checking the “numbers” (e.g. age, bone marrow result), whereas he wanted the doctor to be “alert to who I am.”

In this group of patients, in which acute difficulties could arise rapidly, on a background of long-term monitoring, accessibility was also said to be important, and CNSs were considered particularly strong in this regard. Open access to these HCPs was considered important, particularly in potential emergency situations, such as post-treatment sepsis. In this context, P28 said that he had been given a card with “clear instructions” and found it reassuring to know if he could use this “straightaway,” including out of hours. P31 also commented that he had learned most about his diagnosis from his CNS, who was accessible and “so good” at providing information.

3.5. Communication Skills and Terminology

HCPs were often considered to have strong communication skills. P16, for example, noted receiving “enough” material, provided in a way he could understand. Information exchange was said to be “well-handled” (P11) by others and “very clear” (P12). Clarity was important, with P27R saying that her husband’s consultant was “very, very good at explaining…in those early days of everything happening.” P17 said they did not need to ask questions as “the consultant had given such a good explanation,” and P24 reported how his doctors were “very good in terms of information” and that it was “hard to fault them.” P34 said “It is nice if they can talk to you a bit and give you as much information as possible really. But I find most of the doctors and nurses are pretty good in that regard.” Also appreciated was an ability to “explain rather than “waffle”; give you all the facts so you can go away and think about them…” (P10).

Such skills varied, however, and others contrasted the communication styles of their various doctors, with P35 explaining how she asked the first: ““Have I got a lot to face?” And (was told) “Yes” [taps table to mimic haematologist] just sort of [bang, bang] like that. Whereas I think some of the other doctors might have been a lot more positive…because even now, my last appointment you get ones who are sort of saying, look there’s plenty of treatments and they try and make you feel better about it…I suppose he thought that was his job, to tell me the facts. Whereas it is too much…quite brutal really, I realise now, because there were other ones that have not been like that…if I’d had a different doctor, it wouldn’t have been quite as (bad)….”

Other accounts of poor communication were also reported. P2, for example, noted: “I felt there was very little listening and all telling”; P25 described inadequate explanation (just given “books”); P7 reported only being given the “basic facts”; and P21R saying the family’s questions had not been answered, that information had been “vague, meaningless,” and that the diagnosis had not been fully explained. Further evidence is presented based on P32 in Case Study—Part 2.