Participants and demographics

Eight out of 13 (62%) general practices approached agreed to participate. Electronic clinical record searches identified 114 potential patient participants. After GP screening, 71 invitations were sent to eligible patients with 17 responses (24%). Interviews were held with 14 patients, including 6 with their caregivers (usually partners) present. One respondent could not be contacted, one replied that their pain was no longer cancer related and one declined. Thirteen patient/caregiver interviews were face to face and one was by telephone. Interviews lasted between 26 and 72 min (mean 53 min). Patients were aged between 56 and 76 years, mean 66 years. Patient demographics are summarised in table 1.18 19 Participants are uniquely identified by pseudonyms.

It was not possible to calculate professional response rates as email invitations were sent by network managers. Thirty one professionals participated. Their backgrounds are summarised in table 2. Nineteen professionals took part in interviews (15 face to face and four telephone interviews), and 12 took part in one of two focus groups. Professional interviews lasted between 23 and 50 min (mean 31 min). Focus groups lasted between 47 and 50 min.

Thematic analysis

Themes were organised overall within two overarching categories: ‘the work of managing cancer pain and its context’, and ‘digital tools to help with this work’. The work of managing cancer pain is summarised diagrammatically in figure 1, which also highlights areas mentioned by participants in which digital technologies are already being used to help with this work.

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Figure 1

The context and work of cancer pain management for patients, caregivers and professionals. Areas in which qualitative data suggested that digital tools are already influencing management are highlighted in bold.

In the descriptions below, verbatim quotes are identifiable by italicised text and by the participant role and pseudonym or professional background.

The work of managing cancer pain and its context

Patients gave accounts of cancer and cancer-related pain as burdensome conditions that required effort and hard work to manage them. Pain management for patients and caregivers was only one area of work and was described in the context of managing cancer overall, and the tasks that were necessary to continue living life and participating in valued activities despite pain and cancer. Caregivers helped with all aspects of this work.

John (patient): I really feel sorry for anybody who lives on their own and has cancer because it must be a nightmare for them organizing all their hospital visits and going to the chemist and remembering their tablets and remembering, ken, their appointments, and

Barbara (caregiver): Preparing food

John: Aye, and preparing, looking after yourself at the same time, (…) It wouldn’t be such a great thing looking after yourself with cancer, (…) it’s a full time job cancer management.

Accomplishing personal goals

Complete amelioration of pain was not the main goal for most patients. Pain was considered alongside functional and activity goals, overall symptom burden and medication side effects. The main behaviours necessary to accomplish personal goals included gaining knowledge and understanding about cancer and cancer pain; self-monitoring of pain; balancing competing goals; and communicating with professionals.

Gaining knowledge and understanding about cancer and pain. Patients and caregivers gave accounts of arriving at an understanding of their diagnosis and its role in causing their pain. For several patients, pain had been at its worst before their cancer diagnosis and had been a presenting symptom of late disease. Unexplained pain was particularly difficult to manage, but subsequently acquiring knowledge about the nature of the disease and being able to attribute a cause to the pain was an important step in self-management.

Richard (patient): it was about six months before the cancer was diagnosed (…) they [the GPs] said it was sciatica so I took their word for it (…) I was going to physio’, I was given exercises, I did these exercises and it was making no difference you see. I understand now. (…) It’s there, I’ve accepted it (…) I just get on with whatever I’m doing, and that’s it.

Self-monitoring of pain. Patients with similar diseases and demographics had wide variations in their experiences of pain with respect to the nature, intensity, patterns, response to analgesia and satisfaction with pain control. Unpredictable pain was associated with fear and was particularly difficult to control. Some patients (and caregivers) kept written notes of pain, associated symptoms such as nausea and breakthrough analgesic use. Others recognised patterns based on experience over time. One caveat to self-monitoring was that distraction or ignoring pain was a self-management strategy. However, those who recognised patterns or triggers for pain were often able to manage pain around their own acceptable level.

Christine (patient): it’s if I’ve been standing for a while, (…) when I walk about or stand for a certain time. It’s certain things that I do that gives me the pain (…) I try not to think about it too much, you know, [I] might get more involved in the thinking, ken, in your head: ‘oh the pain’s really bad’, you know? You’ve just got to handle it. I know the things that I’m doing that gives me more pain.

Balancing competing goals: pain, analgesic side effects and living life. Pain was never considered in isolation. Patients had their own priorities and activities that they valued which helped them to continue to live their lives. These priorities could be at odds with using analgesics to control pain. Analgesic side effects, particularly constipation and central nervous system side effects, and the addition of extra medications to control analgesic side effects contributed to overall symptom burden.

Andrew had severe pain on movement but valued playing golf. He decided to accept a level of pain to avoid opioid side effects (constipation, hallucinations and urinary side effects), to continue driving and playing golf. Similarly, Alex valued an active lifestyle and was renovating his home. Physical activity exacerbated bony pain, but breakthrough opioid use was associated with constipation and emotional lability. He made careful self-management decisions to manage physical work, analgesia and side effects.

Alex (patient): up until  two years ago, I led a very active life, (…) I find, as long as I’m doing nothing, the hundred a day [of long acting morphine] is fine, but I can’t sit about doing nothing. So I try to do as much as I can, but an hour, an hour and a half and I have to take morphine, (…) then I have to relax until the morphine kicks in and I’m not feeling any pain anymore (…) the pain control causes other problems.

Communicating with professionals. The extent that patients involved professionals in formulating and managing treatment goals was influenced by continuity of care with a particular professional and by the level of trust that the patient had in their professional’s ability to help.

Christine (patient): [I] haven’t been to the GP for ages cause I just feel, well what can he do? We just keep phoning up for repeat prescriptions (…) None of the doctors down there have seen me for ages. If you said my name to them, they wouldn’t even know what I looked like probably. I’m just a record to them. You know? I’m just a number in a way.

Accomplishing professional goals

The notion that patients had individual preferences for balancing pain with analgesic side effects and valued activities was partly echoed in enquiries with some professionals, who acknowledged their key role in supporting patients to achieve individual treatment goals.

Nurse manager, hospice (professional interview 5). Some people are fearful [of pain] and will immediately want something whereas other patients think, mm, that little bit of control, I’ll just see what happens here, because sometimes they still maybe want to go out and do something and they think: maybe if I take a pain killer then actually I might be a bit groggy (…) they have that balance of thinking what they want to do, and that’s their choice and that needs to be respected a lot of the time.

For other professionals, the main goal was to alleviate pain. There was a sense that patient non-adherence to analgesics could usually be overcome by educating patients about the necessary role of analgesics.

Out of hours GP (professional interview 10): we do get calls relatively frequently from patients who say they’re in pain but they haven’t taken anything (…) we have to say: ‘well, why have you not taken your medication today? You know, that’s what it’s for’. ‘Oh I don’t like to take it I just get constipated’. ‘Well if you want to control the pain then you have to take the medication as it’s prescribed’.

Professional work and behaviours to support pain management

The main work described by professionals was acquisition and maintenance of knowledge about treatment options available to manage pain, and practical aspects of prescribing, such as how and when to convert from one opioid to another. Emergency department physicians all described lack of knowledge as a barrier to good cancer pain management in the emergency department.

Emergency Department Consultant (Professional interview 3). From an emergency department perspective it’s not an ideal place to come with a cancer pain problem. We’ve got limited knowledge and expertise I think with regard to the drugs that are used for treating cancer pain.

Professional work also involved ensuring adequate assessment of pain, and balancing undertreatment of pain with opioid toxicity and other opioid-related harms. The subjective nature of pain and patient’s individual thresholds created difficulties for professionals in making judgements about pain prescriptions.

GP partner (professional interview 18): it’s not like you’re assessing a sodium [level] and you watch the sodium go up and down. With pain it’s so subjective anyway so if the patient doesn’t want to tell me or wants to put on a brave face, or alternatively is getting secondary benefit. I’ve got a patient who’s on lots of opioids who I think probably likes the kind of feeling’

Professionals gave insights into factors that influenced pain management at a health system level. These factors are summarised in figure 1.

Digital tools to help with the work of managing cancer pain

If cancer and cancer pain management were considered work, digital technologies were potential tools. Patients drew comparisons between older or existing tools: some used paper notebooks to monitor symptoms.

John (patient): It’s just a different way of doing things (…), just because you can work on a computer doesn’t make you any more intelligent than a man working on an abacus. A computer is just a glorified abacus at the end of the day.

Engagement with digital technologies in general

There was a spectrum of engagement with digital technology in general among patients and caregivers. Most patients were regularly using computers, tablets or smartphones and had internet connections. Patients were using digital technologies for four main purposes: convenience (eg, online shopping, remote banking); personal organisation; knowledge and information; and communicating with others. In this way, technologies were already being used to help with the work of living with cancer, maintaining valued activities and living life.

Kirsty (patient): I’m on Facebook (…) it can lift your spirits (…) although you’re on your own you feel you’re, because you’re commentating to somebody about whatever, you feel that you’re part, you’re still part of the world, you’re not stuck here on your own (…) I do find it quite supportive, and of course the internet’s there twenty four seven

Some patients had no desire to engage with digital technologies. The main barriers to engagement were lack of interest and technology not fitting with their lifestyle. Additional barriers mentioned by patients and professionals are summarised in table 3.

Ideas and preferences about digital tools for cancer and pain management

Professionals and patients already recognised that electronic clinical records and computerised anticipatory care plans had improved informational continuity and communication between primary and secondary care.

Alex (patient): after I’d seen my Consultant, I had to see the practice nurse about something, and it was only two days later that all the information that I’d given to the Consultant was up there on the computer in front of her.

More engaged patients had ideas for digital pain management tools that reflected the areas of work involved in cancer pain management, namely as sources of information and knowledge, as symptom monitoring tools which could stimulate help seeking and to help with medicines management (particularly for reminders and prompts).

Patients and caregivers were using a variety of internet resources for disease-related information and to validate and expand on information from professionals. There was a sense that the information was easily available, and accessible in various formats (videos, forums, etc). Patients and caregivers felt able to judge how reliable the information was, and valued the ability to choose how much factual detail and reality they were faced with.

Dorothy (caregiver): I went on my tablet to try and understand a wee bit about what he had (…) and the meaning of, you get all these big words and you really don’t understand them … Campbell has an adenocarcinoma of the lung. I found it upsetting.… it made me kind of understand what it was… I started wondering about, how has this happened? How has it formed? Where did it come from? How is it surviving? I wanted to know that.

One patient was using calendar and alarm functions on his smartphone to prompt long-acting morphine dosing, and to organise hospital appointments. None of the participants were using digital technologies for symptom monitoring. Patients felt more comfortable using paper notebooks to track pain and analgesic use, but some spoke about potential advantages of digital monitoring, particularly in relation to recognising worsening trends for pain or analgesic use, and as a way to automatically prompt action by a professional.

Andrew (patient): if I mentioned on one particular day it [pain severity] was six, five, whatever the case may be, and that was being referred back to a recognition centre and someone would say ‘oops, there’s something going wrong here (…) we’d better look into it’, that would be an ideal application for me.

A key concern for all participants was that digital tools should add value over paper resources, and that they should be simple to use and not time or work intensive.