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Living with chemotherapy-induced peripheral neuropathy: a nested qualitative study

09 November 2023
Volume 32 · Issue 20

Abstract

Background:

Chemotherapy-induced peripheral neuropathy (CIPN) is a dose-limiting side-effect for patients undergoing a variety of chemotherapy regimens. These effects can have a detrimental impact on patients' quality of life and ability to perform everyday tasks.

Objective:

This study aimed to explore the experience of living with CIPN prior to and while participating in a randomised study of acupuncture versus a control wait group.

Design:

The study was nested within a randomised trial (n=120) with participants randomised to acupuncture or to control (wait list for acupuncture).

Method:

Participants (n=23) volunteered to be interviewed either by telephone (n=20) or face to face (n=3). The audiotapes produced were transcribed verbatim and analysed using a thematic approach.

Results:

Four themes developed; these included daily life with CIPN, signs and symptoms, interacting with others and management of CIPN. Patients reported compromised dexterity and ability to safely carry out activities. They were often reliant on help and sought out information from others living with the condition. There were also concerns about the lack of effectiveness and the side-effects of medication prescribed.

Conclusion:

Participants were self-selecting volunteers across different cancer groups, but the information gathered could influence future study designs and increase understanding of the impact of CIPN on patients' lives.

The purpose of this study was to gather and analyse the experiences of people living with chemotherapy-induced peripheral neuropathy (CIPN). ‘Nested’ enquiry volunteers were recruited from participants in a randomised study (n=120), some of whom had received acupuncture and others had been in the control allocation (Wardley et al, 2020; Stringer et al, 2022). All control participants were offered a course of acupuncture after their time in the randomised trial.

CIPN has been described as a debilitating neuropathic disorder triggered by neurotoxic chemotherapy agents such as vinca alkaloids, taxanes and bortezomib (Tzatha and DeAngelis, 2016; Girach et al, 2019). The prevalence of CIPN varies depending on the agent received, with reported rates of between 20% and 80% during treatment (Argyriou et al, 2021). CIPN is a significant, dose-limiting side-effect of cancer treatment, which on an individual level can be difficult to manage and which impacts on quality of life; symptoms can persist even when treatment has finished (Bonhof et al, 2021). Patients typically report clusters of symptoms including numbness, paraesthesia, gait dysfunction and disturbances to activities of daily life (Oh et al, 2020; Mizrahi et al, 2023). Drugs prescribed for CIPN include tricyclic antidepressants (eg amitriptyline), anticonvulsants (eg gabapentin) and opioids. However, effectiveness is limited, and these medications are not without their own side-effects, such as drowsiness and constipation.

Efforts are being made to evaluate pharmacological agents, as well as self-care and complementary therapy interventions, such as aromatherapy, massage and reflexology (Kurt and Can, 2018; Izgu et al, 2019). Acupuncture has a growing evidence base that suggests it may help some individuals with this difficult and often long-term condition, which can undermine quality of life and activities of daily living (Chien et al, 2019). Patients at the study sites have been able to access acupuncture for CIPN following a medical referral for over 10 years, with a service evaluation leading to a standardised CIPN protocol (Donald et al, 2011).

Larger randomised study

The primary outcome measure, used to power the quantitative study, assessed change in a patient's self-declared most troublesome CIPN symptom using the Measure Yourself Medical Outcomes Profile (MYMOP2) scale (Meaningful Measures, 2021). Secondary outcomes measured quality of life and symptom burden using the European Organisation for Research & Treatment of Cancer Quality of Life (EORTC-QLQ-C30 and QLQ-CIPN20) tools (EORTC-QLQ, 1993; Le-Rademacher et al, 2017). In the study, 68% of patients in the acupuncture group improved by at least 2 points in their MYMOP2 score compared with 33% in the control group, which reflected a highly statistically significant effect. Statistically significant effects were also found across all secondary outcomes (Stringer et al, 2022).

Nested study: aim

To better understand the experience of living with CIPN and the impact of its current management on activities of daily living the research team sought to include a nested qualitative enquiry within a larger randomised study. A schedule of questions was derived from the literature on CIPN and an initial pilot interview.

Procedures

Participants were sent an invitation letter, patient information sheet, trigger questions (Box 1) and consent forms. They were interviewed by a member of the research team unconnected with collection of the quantitative data and not involved in the delivery of the acupuncture. Interviews were transcribed by another member of the team and, during transcription, data were anonymised to maintain confidentiality.

Box 1.Schedule of questions

  • What led you to take part in this study, in terms of living with CIPN?
  • How was/is CIPN affecting you in terms of sensation and pain?
  • - Sub question: Any differences in terms of hands, legs/feet, and other areas of your body?
  • Can you tell me about how CIPN was affecting your daily life, in terms of self-care, activities in the home, travelling/driving, using a keyboard/telephone etc?
  • - Sub questions: Any changes over time? For example, while in the control group and/or if appropriate, during chemotherapy?
  • Can you tell me about the effects of the CIPN on socialising/engaging with friends/family?
  • Tell me about your interactions with health professionals with regard to CIPN
  • If you are receiving medication to help with CIPN, can you tell me about the effects/changes?
  • Are there any strategies/interventions that you have used to manage/assist with CIPN?

Ethical approval

The main controlled trial and ‘nested’ study were reviewed and approved by the North West Greater Manchester East Research Ethics Committee and access approval was granted by the Research and Development Committees at the research sites.

Analysis

A thematic approach to analysing the transcribed interview data was taken. This is a method widely used and recognised in qualitative research (Kiger and Varpio, 2020). Thematic analysis can provide a ‘rich and detailed, yet complex, account of data’ (Braun and Clarke, 2006:78). Identification of themes was performed by a process of reading and re-reading the transcript individually by the authors and a research assistant, with agreement of the final themes and subthemes. These key processes, along with the checks for correct transcriptions of audiotapes, it has been argued, contribute to the trustworthiness of qualitative studies (Nowell et al, 2017).

Findings

Participants were given the option of either a face-to-face interview (n=3) or via the telephone (n=20) at a mutually agreed time. A total of 23 participants volunteered to contribute to the data collection (see Table 1 for demographic details). In the dialogue extracts that follow, each participant is identified by a personal code that also denotes their sex (F=female or M=male), cancer diagnosis (B=breast cancer or GI=gastrointestinal cancer) and randomisation (A=acupuncture or C=control). Themes and subthemes generated from the analysis are listed in Table 2.


Table 1. Demographic data of the participants (n=23)
Age (years) 42–51 6
52–61 13
62–71 2
72–81 2
Total 23
Sex Female 19
Male 4
Total 23
Living status Alone 4
Data incomplete 5
With family 14
Total 23
Employment status Working 11
Data not available 6
Not working 6
Total 23
Cancer diagnosis Gastrointestinal 4
Metastatic breast 7
Primary breast 12
Total 23
Treatment arm A 12
B 11
Total 23
CIPN upper limb No 3
Yes 20
Total 23
CIPN lower limb No 1
Yes 22
Total 23

Table 2. Themes and subthemes
Themes Subthemes
Signs and symptoms It's linked to chemotherapy
The complexity of CIPN
Night-time is usually worse
Overwhelming and distressing
The burden of other cancer/treatment-related symptoms
Daily life with CIPN Struggling with walking and movement
Difficulties with dexterity
Hazards with everyday activities
I can't drive
Interacting with others Being stopped from doing enjoyable things
Needing help from others
Management of CIPN Medication and CIPN
Self-management
Information seeking

Signs and symptoms

It's linked to chemotherapy

Participants described the onset and progress of CIPN, typically reporting:

‘The latest spate of chemotherapy made it worse … the prickling feeling has made it very very uncomfortable … some sharp shooting pains as well … when touching something it's difficult to then control it and work out what shape it is and it's quite strange actually … it's there constantly.’

9FBA

One participant described a sudden onset impacting on her ability to walk:

‘Three quarters [of the] way through the chemotherapy I got palsy feet and jelly legs … tingling [doctor] said, “we will stop it [chemotherapy] now … it could take a few years for it [CIPN] to stop” … I had the last four without oxyplatin because [doctor] said, “if you don't stop it now, it's your body's way of saying you cannot cope anymore”.’

6FBC

Another described an early CIPN response:

‘Once you started the chemo you get shooting pain in my hands … numbness … I think the sensation took longer to process … if that makes sense.’

11FBA

Several respondents were worried about chemotherapy dose reduction or even stopping it, together and possible consequences:

‘Yeah … because obviously you think about other things with secondary breast cancer … what it could be.’

1FBC

‘They decided to reduce my [weekly] dose of chemo … is it going to work as effectively?… Obviously … it might not … the cancer may come back.’

3FBC

The complexity of CIPN

For some participants CIPN was straightforward to describe:

‘It's painful … it's affected both hands and feet and it's equal.’

47MGIC

Whereas for many others it was more complex, as in this response:

‘Very painful … a lot of fatigue … because of the loss of sleep … balance has been quite bad … pain in my fingers … making me feel sick … burning … a lot of burning in my fingers … there are some quite weird sensations that you get … and I don't know whether it's a nerve firing up … my fingers would shoot out involuntarily … because of the damage … which did not feel nice at all … my feet are worse … I can't feel my feet, or they are burning … cramps into the calf going high up into the knees … the rib ones are quite painful … felt like all my ribs were broke and like a spasm and that would really hurt … big one.’

7FBC

This participant also reported having developed ‘muggy hearing’, which she believed was linked to the chemotherapy.

Another participant mentioned taste and smell changes:

‘When I cook toast, it still smells like it's rotten … and when we are eating … I will say, “it tastes like cardboard”.’

15MBA

Several participants described CIPN as having moved over time, such as having ‘set off just below my knee and it gradually [came] down to the sock area’ (17FBC), or the numbness and pins and needles being a constant, while the pain was sometimes present in the hands and feet (18FBC). The numbness itself was often described as being very cold, ‘like frostbite’ (1FBC; 26FBA; 16FBC; 11FBA). For some the CIPN symptoms were especially worse on the left side of the body (9FBA;7FBC; 16FBC), whereas for others this was on the right (50FBC: 1FBC).

Night-time is usually worse

Respondents said that CIPN symptoms, such as tingling, pain and numbness, were worse, severe and really bad during the night (5BC; 50FBC; 38FBA) just when all they wanted to do is to sleep. Just one person reported that the numbness and tingling was worse in the mornings (64FBA).

One participant talked about being more aware of the CIPN when in bed, suggesting:

‘Obviously you are lying there … during the day you have distractions.’

17FBC

Another participant described her CIPN as a nightly ‘nightmare’:

‘I get into bed and my toes really hurt … it's a bizarre feeling … it's like you have been knelt down and the blood circulation has been stopped … and you get like pins and needles.’

51FBC

Overwhelming and distressing

The participants described the CIPN pain, often ‘shooting’ in nature and typically in the feet, legs, arms and hands as ‘bad’ (29FBA; 7FBC) ‘unbearable’ (10FBC), ‘just horrendous’ (38FBA) and ‘driving me mad’ (50FBC). They described the numbness often located in the feet/toes, hands/fingers as ‘horrible’ and ‘distressing’ (59FBA; 29FBA;16FBC;17FBC). The detrimental effects of these symptoms on wellbeing are summed up in the quotes below:

‘[CIPN pain] … some days it was dressing gown all day … I did not feel well enough to do anything.’

7FBC

‘[CIPN numbness does] wear you out, you get quite depressed … living with it day by day … taken its toll … it affected my independence.’

17FBC

Burden of other cancer/treatment-related symptoms

Participants reported being overwhelmed by the wider symptom burden alongside CIPN, particularly the side effects of chemotherapy:

‘Like streaming eyes … hair loss … tiredness … anaemic … so I didn't really [have] any energy and out of breath quite a lot.’

3FBC

Aside from CIPN many patients reported fatigue as a ‘constant’ and ‘debilitating’ struggle (64FBA; 9FBA). For some of those being treated for breast cancer, hot flushes, particularly at night, were an added burden, typified by this comment:

‘It felt like my head was boiling.’

7FBC

Participants talked about the other challenges of receiving chemotherapy, for example:

‘I was admitted as an emergency … which turned out to be … severe back pain and in the end shingles … so that was the worst time … and I wasn't sleeping.’

17FBC

Daily life with CIPN

Struggling with walking and movement

For many participants it was the altered sensation that compromised the ability to walk:

‘My feet just didn't know what they were doing … not able to walk … I was tripping up … and thinking, “oh, you didn't pick your foot up properly”.’

17FBC

Several people spoke of losing confidence in being able to walk far, with one person describing ‘anxiety … preventing me doing long walks’ (6FBC). In addition, some participants described increased problems the more they walked and towards the end of the day:

‘Out walking … I would have to take regular stops … they [feet] would really start to hurt a lot.’

18FBC

Participants talked about strange sensations triggering ‘unstable feelings … like I was stood on stones … And I think to myself I am just going to go flying’ (29FBA). It felt like ‘walking on spongy stuff … walking on thick moss’ (15MBA) or ‘big clumps of wet sand between my toes … and the end of my toes and the actual foot felt like cotton wool’ (59FBA).

Stairways were deemed a challenge for people with CIPN, with the following quotes illuminating this:

‘Having to come down sideways on staircases. I can't actually feel where my foot is … like I am going to topple over.’

64FBA

‘I have to be careful going downstairs … have to hold the handrail with two hands … unsure about losing my balance because I can't feel my feet.’

47MGIC

Difficulties with dexterity

Many participants complained that their daily dressing tasks were compromised by diminished dexterity. Included in the list of activities were fastening buttons (7BC), placing earrings (9FBA) tying a shoelace (3FBC) and connecting bra clasps (9FBA; 64FBA), with one participant describing her daily struggles with fastening a bra as ‘…20 minutes to just put my bra on … can't do anything fiddly’ (64FBA).

Self-care also involves activities that carry potential risks for someone undergoing chemotherapy, for example, one participant expressed ‘concern when I was cutting my nails, I couldn't tell what I was cutting’ (59FBA), and another participant talked of her ‘struggle with getting in the bath [and] getting out’ (7FBC).

Difficulties using keyboards on mobile phones, computers and electronic tablets was a common complaint, with participants making errors and having to adapt their usage. During the actual interviews two participants said they needed to change over hands to hold the mobile phone because of ‘numbness’ (50FBC; 16FBC). Another, who worked as a secretary, complained:

‘Dexterity is not there … I would mistype things … I couldn't catch the keys properly.’

18FBC

Two participants also commented that they regularly think that they have pressed the keys on their phone or computer, when they actually have not (64FBA;16FC).

Many respondents talked about problems with writing, including how they ‘couldn't hold a pen’ (26FBA), describing how their writing ‘looked like a drunken spider had fallen in the inkwell and gone all over the place’ (47MGIC), or that they ‘struggle writing … do a lot of writing at work, [it's] terrible’ (50FBC). A male respondent talked about his deteriorating writing, also noticed by his wife, and added:

‘I can't do painting … it's the finer detail.’

15MBA

In the simple act of making a cup of tea, one participant stated:

‘I have trouble picking the spoon up [out of the cutlery tray and with the milk] … the seal on the top I can't undo them … I have to do them with my teeth.’

47MGIC

Difficulty opening jars was a common complaint:

‘I couldn't open jars or bottles … lifting, holding and gripping … really difficult.’

38FBA

In addition, preparing food was not only compromised by an inability to grip but also by reduced strength, with participants finding they ‘couldn't chop vegetables … everyday things a problem’ (11FBA) and ‘trying to cut a pizza took quite a lot of determination and a lot of swearing’ (55FGIC).

One participant summed up the frustration of not being able to do the simplest of tasks:

‘Things you take for granted … very frustrating not being able to do them … really struggled with a knife and fork.’

9FBA

Hazards with everyday activities

Dropping things was a major concern of many participants, with risk of injury, scalding and breakages:

‘Picking a pan up, it was hot … the lid … you would not realise it … dropping it and hot boiling water … burnt me.’

7FBC

One participant suggested that health professionals needed to warn patients:

‘… Not to test things to see if they are hot … you are cooking, and you touch it and suddenly realise “hey, that's hot” … be burnt … you wouldn't know it.’

15MBA

Breakages were also a frequent complaint:

‘I struggle with lifting pans … when you pick up a cup … you drop it on the floor … everything … pots … I have gone through that much crockery … it's untrue.’

16FBC

Trying to make and drink tea or coffee was fraught with dangers:

‘It is hard to lift the pot and put it to the side and, when I am drinking tea and I have a cup in my hand, the tea, it goes all over the place.’

29FBA

Another respondent said:

‘If you pick up a cup of coffee, you think you are holding it, but end up throwing coffee all over yourself.’

27MGIA

Everyday tasks created embarrassment and frustration, typified by the following incident:

‘I couldn't even open my handbag … sat at work in a meeting and I needed to get a tissue out of my bag and couldn't open my handbag … it was ridiculous.’

11FBA

One participant discussed the risk of flooding and scalding water when reporting:

‘I can't turn the bath taps off … I can turn them on, but I can't turn them off.’

16FBC

I can't drive

Not being able to drive was very frustrating for many, with interviewees acknowledging they couldn't ‘feel the pedal’ because of numbness in their feet (11FBA; 45MGIA; 5FBC). Indeed, for one respondent the numbness was so severe that:

‘The DVLA have taken my driving licence off me.’

47MGIC

Some participants came to the point where they recognised it was a struggle and a major risk to others and themselves to continue:

‘… because I can't feel my feet … I don't trust myself … am I hitting the brakes … or accelerator?’

7FBC

‘I had to stop driving because I wasn't safe on the road … I did try driving … my foot slipped off the brake and the accelerator and I stopped on the road when I should have been turning right.’

17FBC

Another respondent made the decision to stop driving because of CIPN problems with her hands:

‘My hands lock, and I am frightened that they might lock whilst I am driving … I would be in serious trouble … no one has told me not to drive, I have done that for my own.’

29FBA

Interacting with others

Being stopped from doing enjoyable things

Two participants talked about not being about to walk their dogs and missing the socialising that comes with it (7FBC; 38FBA), with one saying:

‘I have two little Yorkshire terriers … I used to get home from work … a two-mile walk at least [kept] me fit … I have put weight on … what I used to do was meet people … socialise … while I was on my walk … it used to de-stress me from work.’

7FBC

One participant talked about no longer being able to play the piano very well or play her tenor horn because ‘I can't put the valves down’ (26FBA). Another talked about not being able to go out dancing and missing ‘going somewhere nice … I couldn't put heels on … [CIPN] stopped me doing nicer things’ (51FBC).

Participants spoke about CIPN making it ‘difficult’ and finding it ‘upsetting’ not to be able to do activities such as craft stitch (3FBC), making rag rugs (7FBC) and knitting (6FBC). This last person added:

‘So, I had to put that away … tried to do knots with my daughters in the Brownies … but struggling with that with the girls.

6FBC

One participant talked about the CIPN preventing her from washing her daughter's hair, adding:

‘She is only seven … I am finding things more difficult while she was off for the six-week holiday …she loves to bake … I can't stir … it's like a repetitive action with your hands … seems to lock and … goes into spasm.’

16FBC

One male respondent talked about the challenges of going to the pub since developing CIPN:

‘I couldn't pick up my pint … my wife said it's affected me getting my wallet out as well [laughter].’

47MGIC

Needing help from others

Participants expressed frustration that partners, family and friends had to be called on for help, such as:

‘My husband has to cook and look after me … so he is under pressure now … having to drive … but I am the nagging passenger [laughter].’

7FBC

Another participant talked about not being able to travel and having to ‘ask people for lifts’ (17FBC).

Parents talked about having to ask their children to help too, for example:

‘Luckily, I have got a 17-year-old at home, and he is brilliant … really helpful … he lifts casseroles out of the oven for me and things like opening lids.’

16FBC

In talking about personal care, another said:

‘I could cry now I can't even wash my hair … I have to get my sister to help me do that … I can't wear salwar kameez because it goes over your head.’

29FBA

Management of CIPN

Medication and CIPN

Participants expressed frustration that medications recommended for CIPN pain, such as paracetamol and ibuprofen, even on the maximum dose ‘didn't do any good’ (10FBC). Gabapentin was also prescribed, but for some this ‘wasn't working’ (29FBA; 10FBC). Another found codeine phosphate did help (17FBC).

They also shared their concerns about taking medication and side-effects:

‘…been to the GP … gave me amitriptyline at first… made me feel terrible … didn't really do anything for the pain but they made me feel like I [was] hungover in the morning … Now prescribed pregabalin … upped them to 75 mg … twice a day … I seem to be getting more sleep.’

50FBC

A few participants talked about not wanting more medication, because:

‘I know someone who is taking long-term medication for [CIPN] and they can't get off them now … had enough going through my body … don't want more.’

1FBC

‘I was on 300 [mg] and [doctor] upped it to 600 because of all the pain … and it was making me feel sick … I was having to lie down … I hate taking medication … on enough as it is.’

7FBC

One person was concerned about being on a ‘cocktail’ of drugs (15MBA) with another saying that:

‘Having sensations on me feet can make me a bit unbalanced … I am on tamoxifen … it makes me a bit dizzy as well.’

1FBC

Self-management

Participants talked about wearing ‘thick socks’ in bed to prevent ‘cramp by keeping the feet warm’ (6FBC; 55FGIC). One participant, who experiences tingling and numbness, always uses oven gloves to remove food from the fridge or freezer (7FBC). Another also reported using silk-lined gloves day and night to keep their hands warm (55FGIC).

One person had found that exercising, such as running, makes you hot and sweaty, and it creates blood flow to the ends of your fingers and toes' (1FBC). Another talked about how walking around his home without wearing shoes helped improve numbness (27MGIA). Moving about was said by one person to ‘ease it off’, as well as sitting on the edge of the bed with their ‘arms dangling right down to get a bit of relief’ (50FBC).

Two participants had been having reflexology, which the first reported ‘really helps’ the CIPN, and also found ‘it's a nice feeling [and] time out … relaxing … sense of wellbeing afterwards’ (3FBC). The second person had sought out reflexology from the start of their chemotherapy treatment (5FBC). Finally, one participant took it into her own hands by using self-massage of the foot for the cramps to increase ‘blood flow’ and put ‘feeling back’ into her toes (7FBC).

Information seeking

Asked about information from health professionals, one person said the leaflet they had received ‘didn't say much’, and they had gained more from the Macmillan website and by talking to people about CIPN in breast cancer chatrooms:

‘Yeah, you are not the only one in the world, [they shared] … what tablets they were on … and whether they were any good.’

7FBC

Another respondent used a website for people with secondary breast cancer for CIPN information, adding that ‘knowledge is power’ (1FBC).

The need for information as reassurance and support was a common concern for participants with CIPN and other cancer-related concerns:

‘I didn't know what it was … nobody was listening to me … [doctor] said “it will go in time” … kept getting worse … someone told me about the complementary therapy clinic … so I went … just burst into tears and said “can somebody help me, I am in a lot of pain … been going on for months”.

10FBC

‘…upset about it and crying because of the pain …they explained it was quite common to get [CIPN] but I had not heard of it before.’

38FBA

Discussion

For many of the participants in this study CIPN symptoms were responsible for a loss of confidence in walking and difficulties in maintaining activities of daily living, including self-care, and being able to function in roles, such as being a parent, partner, and worker – as well as compromising their ability to socialise with friends and generally returning to enjoying life post-cancer treatment. Many people reported CIPN symptoms being worse at night: this caused problems with sleep latency and disturbances. Recent studies found that CIPN is a significant risk factor for poor sleep quality and, in turn, lower sleep quality can contribute to the maintenance of CIPN (Bulls et al, 2021; Chan et al, 2021).

Some participants explained that the pain CIPN causes, and the wider symptom burden, resulted in them feeling distressed and upset. They identified several risks and safety issues related to the impact of CIPN: these included the dangers of driving with poor sensation and impaired dexterity. Simple tasks such as making a cup of tea, chopping vegetables and lifting pans were fraught with risks of harm to self.

In a recent qualitative study (n=12) by Chan et al (2018), CIPN was reported to be disruptive to activities of living and psychological wellbeing, and a threat to resuming work. CIPN syndrome effects need to be considered in the wider context of treatment burden, such as fatigue, insomnia, existential concerns, resilience, and living with and beyond cancer. In a review of 25 studies, Mols et al (2014) concluded that CIPN is likely to have a negative association with quality of life and they recommended further research work with validated questionnaires. Tofthagen et al (2020), in a recent review of CIPN and quality of life, concluded that the detrimental effects could also be expected to impact negatively on the psychological state of patients.

Medication for CIPN was an issue for some participants, with poor pain control and drowsiness raised as concerns, alongside resistance to taking yet more drugs. Girach et al (2019) found from their systematic review that some CIPN medication had benefits with a reduction in pain and improvements in quality of life. Efficacy and side-effects remain issues for pharmacological agents in CIPN and there is a need to evaluate interventions that do not add to the existing burden of symptoms (Hou et al, 2018). Importantly, patients who knew that CIPN could compromise ongoing chemotherapy and risk potential poorer outcomes were very concerned about disclosing symptoms for fear of chemotherapy being reduced or even discontinued.

Participants in this study struggled with information, guidance, and support in managing CIPN and indeed were willing to share their own strategies in coping with this debilitating treatment-induced syndrome. A review of patient surveys suggests that information needs, and communication continue to be a cause of concern, with needs often unmet as well as evolving overtime (Atherton and Majeed, 2011). It has been recommended that clinicians intervene at distinct points during and beyond cancer treatment to provide advice and support around late effects and recurrence concerns (Tan et al, 2015).

Limitations

This was a self-selecting sample of individuals, who volunteered to take part in the interviews from a larger group in the main study. The study included some participants still on chemotherapy, whereas others were living with CIPN as a long-term side-effect. Demographic data collected from the sample were also limited, for example, details of ethnic origin, time spent living with CIPN, and details of chemotherapy regimen were not accessible for these participants. There was a minority of males in the sample of interviewees, with the majority being both female and having received treatment for breast cancer.

In terms of reflexivity, the authors, both nurses with clinical experience of oncology and a vested interest in assisting patients with CIPN, originated the study. Importantly, encountering patients living with CIPN has not only exposed them to the challenges, this side-effect of cancer treatment presents, but also has raised awareness of the limitations of effective medical interventions to alleviate pain and discomfort. It could be argued that exploring the lived experience of CIPN through a lens of being an oncology nurse brings prior experience and may overly shape the direction of the enquiry and possibly disrupt the quality of the research endeavour (Mitchell et al, 2018).

Conclusion

Participants reported major concerns with CIPN and its associated pain and numbness, and its deleterious effects on activities of daily living, such as dressing, cooking, keyboard skills and driving. This study, albeit with a small sample, did identify some useful patient self-management suggestions. These need to be formally investigated to make any meaningful recommendations. As a randomised study the data from this nested study will be useful for developing a multisite study with a larger cohort and clarifying criteria for inclusion.

KEY POINTS

  • Chemotherapy-induced peripheral neuropathy (CIPN) is a neuropathic disorder triggered by agents such as vinca alkaloids, taxanes and bortezomib
  • CIPN often clusters with other treatment-related side-effects, including fatigue, insomnia and, for those with breast cancer, hot flushes
  • Participants were concerned about the lack of effectiveness and side-effects of prescribed CIPN medications, findings supported by the literature
  • CIPN symptoms were described as a complex mix of numbness, pain and strange sensations, often worse at night. Reported consequences included compromised dexterity and ability to safely carry out activities of daily living, such as walking, driving, cooking, dressing and texting
  • The symptoms often left participants reliant on help from others and they sought information from others living with the condition. Some had found relief from self-care strategies and complementary therapy interventions

CPD reflective questions

  • Are you mindful of the impact that the side-effects of chemotherapy have on your patients?
  • How much do you know about potentially beneficial, non-pharmaceutical techniques that may help patients challenged with chemotherapy-induced peripheral neuropathy? How can you expand your knowledge in this area?
  • Consider whether introducing MYMOP2 as a way of identifying and monitoring the management of patients' most troublesome symptoms would be beneficial for those in your clinical practice