Clinician and patient experiences when providing and receiving information and support for managing chemotherapy‐induced peripheral neuropathy: A qualitative multiple methods study

Abstract Objective To improve patient experience of chemotherapy‐induced peripheral neuropathy (CIPN), it is crucial to identify how patients develop their understanding and perception of CIPN. A wider understanding of the experiences of clinicians who provide CIPN information and support is also needed. This study explored clinician and patient experience of the provision of care, information and support for CIPN. Methods Data were collected between July and November 2019 using multiple qualitative methods. Non‐participant observations were undertaken in colorectal and breast cancer clinics and at clinician stations, including the observation of chemotherapy consultations between patients and clinicians. Semi‐structured interviews with people with cancer and clinicians were also conducted. Data were analysed using inductive reflexive thematic analysis. Results Three major themes emerged: (1) CIPN is a hidden chemotherapy side effect, (2) assessment and management of CIPN is disconnected and (3) patients and clinicians expect openness in CIPN symptom reporting, information provision and management. Conclusion Findings show the need to address the lack of patients' overall familiarity with CIPN. Echoing earlier studies, our findings suggest that knowledge and understanding about CIPN among clinicians are limited or lacking. These insights from patient and clinicians' CIPN experiences can inform future interventions that may address the genuine needs of patients and enhance CIPN support.


| BACKGROUND
Chemotherapy-induced peripheral neuropathy (CIPN) has a negative effect on a person's quality of life (Beijers et al., 2014;Gordon et al., 2018;Tanay et al., 2017). Subjective, invisible symptoms such as numbness, tingling and pain in the hands, feet or both are the most frequently reported CIPN symptoms (Gordon-Williams & Farquhar-Smith, 2020;Park et al., 2013;Staff et al., 2017). CIPN symptoms affect physical function and can reduce ability to perform social, domestic, and work activities (Tanay et al., 2017). Such physical impairment can result in emotional and psychological issues such as anxiety, low mood and inability to cope (Tofthagen, 2010). The dominant management approach is to delay, reduce or discontinue treatment to allow CIPN symptoms to improve. Early patient reporting of CIPN symptoms, assessment by clinicians and early management are key to preventing severe CIPN symptoms or permanent nerve damage (Jordan et al., 2020;Knoerl et al., 2018;Loprinzi et al., 2020). However, people who experience CIPN are unable to describe their symptoms clearly and frequently use metaphors (Tanay et al., 2017), which may hamper symptom assessment by clinicians.
There are few studies exploring clinician experiences of providing information and support for managing CIPN. An American study which analysed audio-recordings of outpatient clinic consultations showed that clinicians discussed and documented CIPN in less than half of their clinical encounters with patients at risk of developing CIPN (Knoerl et al., 2019). Studies indicate that nurses reported they lacked CIPN-specific knowledge (Al-Atiyyat & Banifawaz, 2018;Binner et al., 2011) alongside limited understanding of the neurotoxic nature of particular chemotherapies and evidence-based CIPN management (Smith et al., 2014). In one UK survey with multi-disciplinary clinicians, participants reported they lacked knowledge of CIPN local services, and most reported dissatisfaction with current local CIPN management (Taylor & Tanay, 2020).
It is important to identify how patients develop their understanding and perception of CIPN. The information discussed during patient-clinician interactions concerning CIPN, factors that influence these interactions and the accessibility of CIPN services can all influence patients' overall experience. To improve patient experience, a wider understanding of clinician experiences in providing CIPN information and support is also needed. To date, no study has explored clinicians' and patients' perspectives of their shared experience of CIPN. Consequently, little is known about how patient and clinician perspectives, separately or in combination, influence both patient and clinician behaviours concerning the provision and reception of CIPN information and support. Using multiple qualitative methods, this study aims to explore the experiences of patients and clinicians in relation to the provision of care, information and support for CIPN.

| Study design
This study is part of a larger Experience-Based Co-Design (EBCD) study using an approach that draws upon the concepts of 'user involvement' and 'user experience' for service improvement or intervention development (Bate & Robert, 2007). A qualitative research methodology, combining observation and interview data collection methods, was employed to explore individuals' experiences of information, provision of care and support for CIPN. Observations allowed the researcher to witness what participants did, what they said and how patients and clinicians interacted or behaved (Green & Thorogood, 2018) during pre-chemotherapy consultations and subsequent chemotherapy consultations when CIPN information, assessment and management were discussed. Semi-structured interviews allowed participants to share accounts or perceptions of their experiences (Cresswell, 2014;Green & Thorogood, 2018).

| Participants
Following ethical approval and authorisation from a local research and development office, patient participants were recruited from outpatient oncology clinics in an NHS hospital in London. Purposive convenience sampling was used to identify potential patient participants booked in certain clinic days who were initially approached by their clinical team. Inclusion criteria were as follows: ≥18 years old, colorectal or breast cancer diagnosis and about to have treatment or has been treated with neurotoxic chemotherapy. Patients who had pre-existing neuropathy due to other causes, such as diabetes, were excluded. If they agreed, they were introduced face-to-face to the lead researcher (M. T.) who provided information about the study.
Clinicians were recruited from the oncology directorate. They were invited to participate if they were a permanent member of staff who was involved with information-giving about chemotherapy, including assessment and management of CIPN. All participants gave written consent to participate and were given the option to be interviewed, observed or both. Due to busy workload and time constraints, chemotherapy unit clinician participants decided to undergo group interview instead of being interviewed individually.

| Data collection
Data collection was conducted between July to November 2019 by M. T., a female oncology nurse researcher with previous experience and training in qualitative research methods. Thirteen episodes of non-participant observations were undertaken (Green & Thorogood, 2018)-the researcher did not actively take part in the interaction-over a total of 39 h in the colorectal (Thursdays 1:30 PM-4:00 PM) and breast cancer clinics (Wednesdays 9:30 AM-12:00 PM). Thirty-four hours was conducted in the outpatient unit clinician station (staff hub), and 5 h was conducted in clinic rooms during chemotherapy consultations between patients and clinicians. Consultations were audio-recorded and transcribed if both patient and clinician consented. M. T. documented field notes. Table 1 shows examples of the observation schedule and field notes. If a patient was accompanied by a friend or relative, they provided verbal consent before observation of the consultation began.
A topic guide with open-ended and probing questions and pilot tested with patient representatives (shown in Table 1) was used for the semi-structured qualitative interviews, which lasted between 19 and 45 min. All audio-recorded patient and clinician interviews were conducted by M. T. in a single clinic room; recordings were transcribed verbatim.

| Data analysis
The inductive reflective thematic analysis (RTA) process described by Braun and Clarke (Braun et al., 2019) was used for the analysis. RTA allows the identification of meaning-based patterns through a rigorous process of data familiarisation; data coding using MS Excel; theme development and revision; and theme refinement, definition and naming. It acknowledges the active engagement of the researchers in the data interpretation and knowledge production (Braun et al., 2019).
M. T. coded the interview and observational data. G. R., J. A. and A. M. R. were involved in generating the themes. All researchers discussed their description and interpretation of the emerging themes.
This iterative process of revision and refinement continued until consensus among the researchers was reached. The process was completed separately for the patient interviews, clinician interviews and observational data. To form the final themes, the themes from each

Clinicians
Are there any factors that influence the main priorities/topics during chemotherapy consultation? What are these? What key messages would you like the patient to remember after chemotherapy consultation? Can you please describe how you give information about peripheral neuropathy to patients? Please describe how you feel about CIPN. What will help when giving information to patients about CIPN?

Patients
How did you find the pre-chemotherapy consultation? What were the key take-home messages for you? What side effects of chemotherapy stood out for you, if any? Why do you think this/these stood out for you? Can you please tell me your understanding of peripheral neuropathy as a possible side effect of your treatment? What were the key take home messages for you about this particular side effect? How do you feel about this side effect? data source were compared to determine similarities, differences and relationships. Triangulation of different data sources during analysis enabled validation of identified themes (Nowell et al., 2017).

| FINDINGS
In total, 15 clinicians and 12 patients consented to participate.
Participant characteristics and details of their participation in consultation observations, interviews or both are shown in Table 2. Nine clinician and 11 patient semi-structured interviews (Cresswell, 2014) were conducted, and a group interview with four nurses was also conducted. Nine patient-clinician chemotherapy consultations were observed.
Three major themes emerged: (1) CIPN is a hidden chemotherapy side effect, (2) assessment and management of CIPN is disconnected and (3) patients and clinicians expect openness in CIPN symptom reporting, information provision and management. Illustrative participant interview quotes are presented in Tables 3 and 4. Data extracts are presented using participant identifiers P (patient), C (clinician) and FN (field notes). The themes and subthemes as well as the relationship of these to the overall patient experience are represented in Figure 1. Fear of death 'I was very eager to get into chemo because I know I need it so badly. I was ready to face all the side effects just because I knew I needed it. Looking at the list you know, it was a very substantial list. So obviously I was a bit like "Okay, this could be really difficult", but I was just ready to do whatever the side effects were.' (P-11) 'In the beginning, you are so frightened and you have just had this massive, big blow that's blown your whole world apart, saying what you have got and you have more fear of death than fear of medication… I just thought they did not give me the last one, I would not get neuropathy, but I was thinking if they do not give me the last one, then my cancer's going to grow quick. I was more frightened of not having it (chemotherapy) than having it.' (P-05)

Lack of awareness of CIPN
'I had no idea that neuropathy even existed before knowing that I needed to have chemotherapy and that that was one of the side effects of it. All of them, my friends and family were very shocked when I told them that it was a thing that could happen as a result of the chemotherapy.' (P-12) 'It was a new concept. I had not heard of that as a side effect with cancer treatment. But I guess in the list of side effects I usually discuss with the doctor, it is quite near I guess the bottom because it's like it's not an obvious one.' (P-11) 'I did not understand that it was going to be like it was. When I left it was a colder day and it was raining and when the hands get wet and you push a door or something like that and then shock (moves hands) "What's going on?".' (P-01) 'Do I report them as well? I thought it (CIPN) was normal' (P-03) There's nothing I can do.' (P-07) 'They're just moving around like insects. They're now on the feet. They gave lots of reading material but I think the experience and reading are two different things.' (P-10) 'And I just sort of did not think of it as anything to report. But now because it's happened a few times, I feel like it is chemo related. I guess it's because it's not one of the high profile things that you think about when you think about chemotherapy, like the nausea, the vomiting, the hair loss. It's not so like well-known. But I think it was on the list of possible side effects I got in the handout, but it wasn't one that I paid particular attention to I guess.' (P-11) 'I would say that if your fingers or toes feel at all numb at any point, then do not wait for the next consultation. I would say phone up and let somebody know. I think I was a bit slow. I know I was a bit slow. I do not like to be a trouble and it wasn't hurting me. It wasn't severe. I thought, "ah, it's fine. I'll just wait because it might not be anything anyway." I think it's probably better to err on the side of assuming that it probably is. I think if I made a mistake anywhere, that was it probably (for not reporting sooner

Fear of death
Being faced with cancer which can be fatal if left untreated means CIPN is not a key patient concern at the start of treatment. Their fear of death compelled them to accept the side effects of treatment.

Lack of awareness of CIPN
Prior knowledge of CIPN was lacking among patient participants.
Some said it was a chemotherapy side effect that they had never heard of before. Their friends, family and work colleagues were also unaware of CIPN and did not understand the symptoms. At the start of chemotherapy treatment, most patients identified hair loss as the most worrisome side effect. Only one mentioned CIPN, due to their employment which involved the use of fine hand movements. Patients who agreed to be observed during their pre-chemotherapy consultations with a chemotherapy nurse were given verbal and written information about CIPN. However, in interviews only a few days afterwards, patients said that they did not fully understand what CIPN was and were unaware of the need to report CIPN symptoms.

Experience of symptoms shapes perception and understanding
It was clear that patients' understanding and perception of CIPN changed as they experienced symptoms and moved through their chemotherapy treatment. Many acknowledged that verbal and written information given to them by their clinicians 'gives a clue' (P-08, P-10) but it was only when they experienced it that they really understood CIPN symptoms (P-07 Dependence on patient reporting 'And then you say "oh, have you mentioned to anyone?". "Oh no, I do not want to mention it because I'm a bit worried that they'll stop my treatment" or something like that.' (C-07) 'I think the things like for me I would struggle with the self-management area. So with other side effects I could suggest things for patients at home. The difficulty is you are very much reliant on how someone has assessed a patient, reliant on the patient reporting their symptoms; and if it's bad and we do not get on top of it, the patients can be left with side effects for years.' (C-06) 'The patient should be confident to recognise the side effects and let us know, for me this is the goal' (C-09) Difficulties and challenges providing support 'I think a lot of clinicians are worried about frightening patients and I think a lot of clinicians are worried about patients refusing treatment.' (C-08) 'I think it's important to tell the GP but then again, I guess the reason we do that is that I feel like we do not have anything to offer them. I do not know of anything we can offer them to help them. They get abandoned a bit, I think' (C-14) T A B L E 4 Representative participant interview quotes (Themes 2 and 3)

Themes Subthemes Participant quotes
Theme 2: Assessment and management of CIPN is disconnected

Responsibility and reactive management
'Hopefully the doctors before they get to us but then they sometimes forget to tell the doctor and then they'll tell us extra things that they either forget they need to tell the doctor that or they just were not aware so they'll just tell us that and then we relay it back to the team (doctors  -14). 'I know that they do something to do with pain with peripheral neuropathy. Physiotherapy, I am not 100% sure exactly. I do not know what the service is but that would be something that I would refer…' (C-01) 'I think from my discussions with a lot of my colleagues from that side of things, they often just feel that it's a symptom that we know comes on and I guess because there's no clear treatment plan for it, it just sort of thought that "well, we'll just make do" kind of. So that's why I feel and from my discussions, that's why I can pick up on why we do not get as much of a referral rate for them.' (C-07) 'Physiotherapy, I'm not 100% sure exactly what it is. I know that they do something to do with pain with peripheral neuropathy. I do not know what the service is but that would be something that I would refer through electronic patient record.' (C-06) 'I do not think they explore the neuropathy, the nursing staff, just before the treatment, because the doctor or the prescriber who see the patients before every cycle have to deal with that.' (C-09) Theme 3: Patients and clinicians expect openness 'It's a very much an honesty the best policy syndrome. I guess you try to offer them the information about, say neuropathy when you use platinum compound or even bortezomib-It is that transient to permanent zone of experience. And making them appreciate the fact that they will not be alone. That dose reduction is about safety profile, and not because of their inability.' (C-05) 'I suppose something like peripheral neuropathy is not that urgent but it's important… to report sort of urgent symptoms but also to keep a record of symptoms that we need to know about but maybe aren't urgent… I think it's about being honest about what could happen, and this is why and working with patients because I do not know if patients will withhold that information or not… I'd say it would be a joint decision (treatment modification). I have had patients who have not wanted to stop or reduce the dose and that is quite difficult. But then it is about having an adult conversation with that person and I suppose it's about being honest. So, you know I would tend to say to people, "It's no good us carrying on if you start falling over and you cannot walk properly, we do not want to leave you like that at the end of this treatment."' (C-08) 'They only told me "you might suffer". No, I do not think they did tell me to be fair. I think I found out myself on the internet. I did ask how long, and he did not really say anything. He said "it could be a couple of months, it could be up to two years, it might be permanent". I've read it can be permanent… there should be someone to tell you exactly what drugs you are taking, how they can affect you and a bit more. Obviously, because it's medical terms we do not understand, it's going over your head, so I think in layman's terms, it should be someone to support you more on telling you about the chemo.' (P-05) 'I cannot remember whether they said its numbness or tingles, tingling in your hands and feet. I do not know, they did not-Nowhere sort of says how to sort of deal with it, do your exercise or anything, I do not know or do you just put up with it? I do not really know.' (P-03) 'For me because of my understanding of how I use my hands and how I work. Making that decision [dose reduction] was quite straightforward, like I was quite determined I was resolute, made sure obviously that I had the right information, and I asked all the right questions, which is why they reduced some of my chemo' (P-12) patient who reported CIPN but was also pyrexial (high temperature) during a consultation was investigated immediately for infection (FN,23 September). Informing them about CIPN was delayed because infection was potentially fatal. Chemotherapy nurses, regardless of their seniority, reported that when they explained chemotherapy side effects, they went through the side-effects list, from top to bottom, from pre-printed drug-specific patient information sheets and the information on the chemotherapy consent checklist (C-01, C-06, C-10). This strategy ensured they covered everything. CIPN was far down the list of side effects in these documents; and information about CIPN and its management were limited (FN, 22 August). In contrast, senior doctors and experienced nurses who were aware of the side effects of neurotoxic drugs gave information about CIPN without prompts from drug information sheets. They were also observed to be more comfortable with assessing and asking CIPN-relevant questions (FN; 19 September, 4 November).

Focus on acute CIPN symptoms
There was more emphasis on acute CIPN than long-term CIPN symptoms. Clinicians identified numbness, tingling and cold-induced neuropathy as the main symptoms of CIPN. However, the management advice given to patients was focused largely on managing coldinduced neuropathic symptoms (C-01, C-06, C-10, C-11, C-13; FN 19 September). Clinicians from the rehabilitation unit, who provide support for managing long-term CIPN symptoms, identified CIPN symptoms serendipitously, that is, when patients were referred for other reasons such as post-surgical rehabilitation (C-07, C-15). One nurse admitted, 'I know that they do something to do with pain with peripheral neuropathy. Physiotherapy, I am not 100% sure exactly. I don't know what the service is but that would be something that I would refer …' (C-01). Most clinicians showed awareness and knowledge about the possible permanence of CIPN symptoms. Some reported that they do not give information about the duration of CIPN symptoms because they lacked knowledge and every patient is different.

Dependence on patient reporting
Clinicians mentioned that 'underreporting or overreporting of CIPN symptoms are dependent on patients' (C-04) and the only way to monitor CIPN was for patients to inform their clinicians 'because the symptoms cannot be determined through blood tests or routine clinical examinations' (C-07, C-09). They also relied on the person who performed the assessment to communicate this further to the clinical team (C-06, FN).

Difficulties and challenges providing support
When asked to describe their experiences and feelings about assessing and managing CIPN, clinicians predominantly used negative words and phrases such as 'difficult', 'tricky', 'frustrating', 'gives us a lot of headaches', 'reliance on patients to report their symptoms', F I G U R E 1 Representation of experiences of clinicians and patients of the provision of care, information and support for chemotherapyinduced peripheral neuropathy 'cannot be seen', 'a problem' and 'not easy to manage'. Some clinicians also perceived that their colleagues were worried about frightening patients regarding CIPN as they might refuse treatment (C-08). Several clinicians said that whilst they felt they could not offer anything, they were disappointed they could not do any more to help manage CIPN symptoms and felt that patients were left to manage their symptoms themselves (C-14, C-06).
3.2 | Theme 2: Assessment and management of CIPN is disconnected

| Responsibility and reactive management
Although clinicians accepted CIPN management was everyone's responsibility, the main onus was still on the oncologist (C-07, C-01, C-05, C-08

| Lack of referrals and missed opportunities
Within clinical teams, sharing experience and knowledge of CIPN was passed from the senior to junior clinicians during their day-to-day work. However, at the time of data collection, the rehabilitation team noted that they 'haven't had as many CIPN referrals because there hasn't been a neuropathy teaching event more recently' (C-07). When asked what could support their practice, one of the clinicians rem-  Table 5.
Theme 2 emerged from the clinician interviews and was also informed by observational data from consultations. From the observational fieldwork, there were four main teams who were involved in CIPN assessment and management from consent to end of chemotherapy: • Outpatient clinic clinicians: oncologist, clinical nurse specialist, senior cancer nurses, highly specialised oncology pharmacists, • Chemotherapy unit clinicians: senior and junior chemotherapy nurses, • Rehabilitation team: physiotherapists and occupational therapists, • Complementary therapists: accessed by patients outside of standard routine.
Clinicians were aware patients could report their symptoms to any of these groups, but less experienced clinicians lacked CIPN  (Bakitas, 2007).
The obscurity of symptoms is compounded by the varying knowledge and confidence of clinicians when giving information. Patients' CIPN experiences shaped their perceptions and increased their understanding of CIPN over time. This confirms how it is crucial that CIPN information is given before commencement of chemotherapy and is continuously reinforced throughout treatment and beyond treatment completion (Tofthagen et al., 2013).
Whilst patients' understanding of CIPN was lacking at the start of treatment, their experience allowed them to grasp the uniqueness of the CIPN experience. The ambiguity of symptoms (Tanay et al., 2017) and the lack of available resources to describe CIPN may also explain why some patients in this study were unable to remember whether CIPN was discussed by their clinicians.