exploring the care experience of patients undergoing spinal surgery: a qualitative study

Exploring the care experience of patients undergoing spinalsurgery: a qualitative studyjep_1783 1..7

Rachel E. Davis PhD,1 Charles Vincent PhD,2 Ania Henley3 and Alison McGregor PhD4

1Research Associate, 2Professor, Department of Surgery and Cancer, Imperial College London, St. Mary’s Hospital, London, UK3Research Assistant, 4Professor, Department of Surgery and Cancer, Imperial College London, Charing Cross Hospital, London, UK

Keywords

patient education, patient experience,patient involvement, patient perspective,patient safety, service quality

Correspondence

Dr Rachel DavisClinical Safety Research UnitImperial College LondonDepartment of Surgery and Cancer10th floor, QEQMSt. Mary’s HospitalSouth Wharf RoadLondon W2 1NYUKE-mail: [email protected]

Funding: This study was funded by ArthritisResearch UK.Conflicts of interest: None.

Accepted for publication: 21 July 2011

doi:10.1111/j.1365-2753.2011.01783.x

AbstractPurpose This exploratory study sought to explore the patient experience of the surgicaljourney from decision to operate, to hospitalization, discharge and subsequent recovery.Design Patients attended one of two focus group discussions.Patient sample Seven patients that had undergone surgery for spinal stenosis or discprolapsed participated, aged between 48–75 years (mean age 59); five were male.Methods Patients’ attitudes towards the information and care they received from the pointof the decision to operate through to post-operative recovery were explored. Particularattention was paid to patients’ information needs, support provided, general understandingof the processes and ways in which care could have been improved.Results Patients identified nine main ‘needs’ they felt played an integral part in enhancingthe patient experience including the need for reduced waiting times, for better informationand preparation, to be proactive, to speak up and ask questions, to feel safe and to be treatedwith dignity and respect; and the need for ongoing support, human contact, and; continuityof care.Conclusion These findings suggest that there are several measures that could be taken toimprove the patient’s surgical experience. In particular, providing appropriate informationto patients in a timely manner and ensuring that support and advice is easily accessible forthose patients that need it are key areas for improvement.

IntroductionGlobally, the number of surgical procedures on the spine isincreasing particularly in relation to surgery for nerve root com-pression. This has been attributed in part to the growing ageingpopulation [1–3]. However, although the numbers of proceduresare increasing, there is great variation in the levels of functionalimprovement and patient satisfaction. For instance, global successrates have been noted to be between 58 and 69% in decompressionsurgery [4–6], with even greater variability displayed in patientsatisfaction – 15–81% [2,7–9]. The term patient satisfaction canrange from a patient’s satisfaction with the actual surgical proce-dure and its success, to how satisfied they are with the serviceprovided by the hospital, particularly, the hospital facilities and thepatient’s relationship with the health care professionals [7,8].However, the majority of studies use this term more globally so itis hard to determine what part of the care process it refers to.

Poor communication between patients and health care profes-sionals has the potential to lead to unrealistic expectations of

surgery – it is plausible therefore that this in turn could lead (inpart) to reported variations between global success rates of surgery(outcomes) and patient satisfaction. An approach to examining thisis to explore what patients expect from surgery and then compareit with what is achieved. McGregor & Hughes took this approachand noted that many patients had unrealistic expectations of theirsurgical outcome [7,8]. One of the primary goals for surgery is tomaximize patient satisfaction and health-related quality of life.Given that patients’ expectations of surgery can play an importantrole in recovery and perceived quality of life, there is a significantneed for appropriate patient education on surgical outcomes.

In addition to patient satisfaction with the surgical procedure, itis important to consider satisfaction of the care process, whichwould include the hospital experience, post-operative care andsubsequent management in the community. The quality of healthcare delivery is increasingly under the spotlight with an emphasison improving the patient experience; what is less clear is how thisis achieved and its relationship to outcome and indeed patientsatisfaction.

Journal of Evaluation in Clinical Practice ISSN 1365-2753

© 2011 Blackwell Publishing Ltd, Journal of Evaluation in Clinical Practice 1

In order to improve the care experience for patients, we need tofirst examine key concerns or sources of dissatisfaction for patientsundergoing spinal surgery. Interventions can then be developedand implemented to improve the health service provided. With thisin mind, the aim of this study was to explore the health careexperience of patients undergoing spinal surgery with a view tofurther understanding their needs and the issue that led to dissat-isfaction. Specifically, we wanted to explore the patient experienceof the surgical journey from decision to operate, to hospitalizationand discharge and subsequent recovery

Methods

Design

This was a prospective qualitative study using focus group discus-sions to explore spinal patients’ experiences of the health caresystem and their perceptions of how the system worked for them.Ethical approval was obtained for this study.

Participants

Patients in our study were recruited from a larger randomizedcontrolled trial (RCT) on the post-operative management ofpatients undergoing spinal surgery. This RCT ‘Function afterspinal treatment, exercise and rehabilitation’ (FASTER) sought toexamine whether functional outcome of patients undergoing spinaloperations could be improved by a post-operative rehabilitationprogramme and/or educational booklet [10]. The inclusion criteriafor this study were any patient that was part of the larger RCT thathad undergone one of two specific types of spinal surgery; decom-pression surgery for stenosis or disc prolapse and had achieved the1-year follow-up. All participants were over the age of 18 and wereable and willing to give informed consent.

In total, 20 patients were approached; of this, seven were avail-able to make one of the allocated dates for data collection (35%response rate). Participants were age between 48 and 75 years(mean age 59); five were male. One patient in our study opted to goprivately for their surgery; the remaining six patients were seenthrough the National Health Service (NHS).

Procedure

All participants attended one of two focus group discussions con-ducted by an experienced qualitative researcher (RD) on the 11thand 12th of March 2010, respectively. A pre-determined interviewschedule was followed that explored patients’ perceptions towardsinformation provided and support and understanding of thegeneral processes involved and ways in which the care experiencecould have been improved. These issues were examined at differ-ent stages of the care pathway: the decision to operate; the prepa-ration for surgery and hospitalization; the discharge from hospitaland subsequent recovery, and; the journey as a whole. For eachquestion, the interviewer (RD) continued questioning patientsuntil saturation point had been achieved, and no further issues orthemes emerged. Two researchers took field notes of the entirediscussion (AH and AM). Both focus groups were audiotaped andtranscribed verbatim. Each of the focus group discussions lastedfor approximately 90 minutes.

Data analysis

The transcripts were analysed using thematic analysis. A phasedapproach was employed. First, information provided by partici-pants at each stage of the care pathway examined was categorizedbased on shared ideas. Three researchers (AM, RD, AH) indepen-dently performed the analysis. Second, the field notes werereferred to by each of the researchers individually and examined inrelation to the emergent themes. Third, the researchers (AM, RD,AH) met to discuss a general consensus regarding the findings inorder to triangulate the findings.

ResultsIn the results, we describe the main issues and themes that aroseand illustrate with key examples using quotes from patients. Wewill begin with the decision to undergo surgery. We will thendiscuss some more general needs that patients felt should be metrelating to issues and problems that were relevant to a number ofstages of the care pathway.

The need to undergo surgery

All participants when questioned said that the decision to undergosurgery had not been a difficult one. As could be expected, themain overriding reason was pain, which not only had an ongoingpresence in patients’ lives but also caused substantial mobilityproblems:

its very difficult to describe back pain to people and unlessthey have actually suffered it for any length of time, theycan’t really comprehend the distress and exhaustion(Patient A).

which do you want? The operation or the pain? Well theoperation! Couldn’t be in pain for the rest of your life(Patient B)

it took me about 30 seconds to decide that this (surgery) wasthe only way forward, I had suffered such a long period ofpain beforehand (Patient C)For one patient in our study, however, pain was not the main

driving force in the decision to undergo surgery:I think my experience was quite a bit different . . . I neverreally had that level of pain . . . basically having a prolapseddisc was causing the nerves at the base of my spine tobecome mangled and that was the cause and if the prolapseddisc hadn’t been removed the nerve would have got evenmore mangled till I would have probably ended up in awheelchair (Patient A)

The need for reduced waiting times

One of the key causes of stress and frustration for patients was thelength of time they had to wait for their surgery, mainly because ofthe pain they were in:

when you’re suffering, you think time. You think I wishthey’d hurry up (Patient E)

I personally found the waiting time quite stressful . . . but Iwas in great pain . . . I had waited quite a while, I did go for aprivate consultation and then I went over to NHS to wait formy operation. And at least twice, I think, I am told no, thatthey hadn’t received the relevant paperwork so we can’t

Patients’ experiences of spinal surgery R.E. Davis et al.

© 2011 Blackwell Publishing Ltd2

proceed maybe 6 weeks after I had seen the consultant andit’s two sides of rather despondent telephone calls. Not that Irang every day, obviously not, maybe every 3 weeks or so butit just went on and on. One time I had 5 different numbers toring and it can be very distressing (Patient F)However, another reason that was mentioned was that until you

have a date for your surgery, you do not have the reassurance thatit is going ahead:

it’s just reassurance to know that we exist in the system,which brings you that feeling, ‘alright, I am in thesystem . . . I am being looked after’ (Patient G)

it’s back to that human touch again, somebody actually saying‘you are actually in the system’ (Patient E).The exception to this was when the private patient:I was fortunate not to have to have a long wait. I was in hos-pital within 7 days and again the information sent to me wasagain well prepared (Patient C)

The need for better informationand preparation

All the patients unanimously agreed that being provided withenough information is extremely important. On a number of occa-sions, patients highlighted the lack of information provided. Thiswas apparent at all stages of the pathway.

Patients felt they needed more information about the generalmanagement of the hospital ward:

I think because it is the first time I have ever been an inpa-tient in a hospital I think people have assumed that I knewstuff that I didn’t. I mean, I didn’t know until somebody toldme the next morning that by the side of your bed, that if youneeded attention, you could actually like press it and some-body would come if you were suddenly in a lot of pain; but Iwasn’t told that and I don’t think I was terribly happy about it(Patient A)However, most of patients’ concerns centred around what to

expect during the post-operative recovery in the hospital and indi-cated that if they had been given more information, this could havemade them feel less anxious:

I didn’t know I was going to have a drain, obviously I rea-lised there was something in my back when I woke up andwas more aware of what was going on, it didn’t frighten meas such to have it there, but I would maybe have liked to haveknown (Patient F)

I felt slightly stressed, it was very minimal thing, but I didn’tknow why I’d got a drip, nobody had time and I didn’t askbecause people were flying round and I thought it was a sillyquestion (Patient F)Concerns regarding the amount of information that was pro-

vided prior to discharge were also raised. These concerns not onlyrelated to the surgery aftercare, in particular wound dressing, butalso what to expect in relation to medication side effects and moregeneral issues about how long recovery should take.

I did want to know how the dressing would work . . . it wasunclear as to whether you need to change it, how often youneed to change it, whether it was ok to have a shower or abath. That was the one thing I was worried about, I knew thedressing would stay on for a few days, so I was worried that

if I had a shower which I was going to have straight away,whether it would stay on and the nurse who signed me out,gave me a few dressings, but didn’t say if they were water-proof dressings (Patient G)

I was being administered the tramadol, which obviously wasto control the pain. The Tramodol has this most extraordinaryeffect on me personally, that is it disconnected my brain fromthe rest of the body and I kept falling down, I could not walk,I could not coordinate and nobody really said to me. I thoughtthat this was a normal result of the surgery, anaesthetic andgeneral medication, but really the responsible agent was Tra-madol, which was seriously undermining my health and Idon’t think anybody took that on board. Indeed I went homefrom the hospital and the problem continued until I read theleaflet on the Tramadol and it said on some people the effectsare very very drastic. I discontinued it and the symptoms dis-appeared literally within 48hrs. (Patient C)In addition to the nature of the information provided, the need to

present information in a timely and appropriate manner was alsohighlighted:

It was the length of time between each stage of the procedure. . . there was a length of time so I forgot what I had been toldreally about the procedure . . . I think for me personally Iwould like it written down . . . I can sit there and say yes yesyes, and I am hoping I am taking it all in, but by the time Ihave gone out there has been so much going round, I forget it(Patient F)

I was rather taken aback when I was actually wheeled into theoperating theatre, I was at that stage told that they discoveredhaving again looked at the MRI scan, that it is just possiblethat the standard lumbar microdiscectomy will not be possibleand they might have to approach the surgery from four differ-ent points which would have meant not only a significantlylonger recovery time but also possibly additional side effectsand problems and I was confronted with that literally aminute before the pre-med, before the surgery while the teamwere waiting for me there. I thought that that was rather oddbecause I felt I had no option because I was already there, Icould not go back and the only thing I could say is to agree.(Patient C)Finally, while all participants were in agreement that patients

should be provided with adequate information about their surgery,several patients commented on the need to take a ‘personalized’approach because not all patients will want the same level ofinformation:

I think too much information is bad for you; it’s alright forintelligent people but ordinary people in that situation thatare not intelligent . . . you give them too much informationand they don’t know if they go this way or that way(Patient B)

There are some things in my life that I would rather not knowtoo much and some that I would like to know more about. Ithink everybody is like that (Patient G).

The need to be proactive

Many patients felt that it was important to take on an active roleand seek out information if they felt they were not given enough.

R.E. Davis et al. Patients’ experiences of spinal surgery

© 2011 Blackwell Publishing Ltd 3

I am a great believer in proactivity, you know, find out asmuch as YOU can and do whatever YOU can to assist(Patient D)

One of the main resources that patients consulted was the Internet.The Internet was deemed important not only to find out more abouttheir condition but also to understand in a way that made moresense to them, rather than from the surgeons’ perspective:

I found it very useful for me to research stuff on the web notto become an expert on medical advice but to understand inmore detail in a way you can’t discuss with the surgeon. Theylook from a different perspective to you rightly or wrongly.To say it in a nice way it’s a bit of a factory for them(Patient G)

The need to be able to speak up andask questions

In addition to using the Internet, all patients acknowledged that thesurgeons themselves could be a useful resource for finding outinformation about their surgery. One patient who was particularlyassertive said they would always ask their surgeon as many ques-tions as they needed to:

I asked questions (to the surgeon) . . . the details that I neededwould have not been forthcoming. It’s about putting yourselfforward . . . (Patient D)However, for most, the extent to which they felt able to ask

questions varied dependent on the individual circumstancesrelated to the medical encounter – most felt that time constraintsprevented them from speaking up:

I am a kind of laid back sort of guy . . . but I think somebodymore vulnerable could possibly have found Prof XX veryvery scary, I found him fairly scary, so I think some wouldhave found him intensely so . . . He was running about 3/4 ofan hour late and he just wanted to get people in and out . . . Ididn’t have a chance to ask any questions (Patient A)

I always find it difficult to talk to the nurses because I lie inbed, and I see them whizzing from right to left from here tothere, and I always think my question isn’t particularly impor-tant (Patient F)

The exception to this was the patient that received private care:I felt I could ask questions . . . I had the privilege of being aprivate patient, so I wasn’t restricted to 5 minutes . . . I feltthat he (the surgeon) gave me a remarkably clear informationabout the surgery (Patient C)

The need to feel safe

All patients emphasized the importance of feeling safe while in thehospital, but one patient in particular elaborated on this:

When I was wheeled onto the ward, I remember waking afterthe initial snooze and I was aware that (my surgeon) wasactually there, they were going through basic procedures and Iwas aware that I was safe . . . I was surrounded with peoplewho obviously were looking after me . . . that was extremelyimportant. I think for all of us, surgery is a major thing and itis the vulnerability of us after the surgery, it is so significantthat one feels that one is safe (Patient F)

The need to be treated with dignityand respect

Patients cited a number of situations when they felt they had notbeen treated in a compassionate manner:

When I was actually being wheeled up from the ward to thetheatre, I was being wheeled by a nurse, a male nurse and anorderly and throughout the whole journey they were jabberingand laughing with each other in their own language like theywere taking the rubbish out to be collected and to be honest, Ithought that was absolutely disgraceful. I really wanted to saysomething, but what can you do under those sorts of circum-stances (Patient A)

The need for ongoing care and support

There were numerous occasions where the patients identified theywould have liked more support or help; this was particularly appar-ent for one patient that lived alone who felt that his living situationhad been ignored. When questioned on how long it took to becomeconfident going up and down stairs (after discharge), the patientreplied:

pretty much I didn’t really have a choice because, it was justthe case of hanging to the banister and crawl up (Patient A)The patient went onto discuss the problems he encountered in

relation to his wound dressing:they gave me some change of actual dressing, but I couldn’tactually use them because I couldn’t change them myself, andhad no one else to do it for me. So I literally used the oneuntil it eventually came off and I just left it.I just made sure Ididn’t shower or anything for a couple of weeks because as Isay there isn’t any way that I could have done it myself.(Patient A)The patient also experienced post-operative complications after

the surgery and highlighted the lack of help provided.I explained what the main post op symptoms were, whichwere basically incontinence, and I said, what is the cuttingperiod, what can be done about it? And he said, I don’t knowreally, it can take weeks, months or years. And that was itreally, even now a year post-op, I am still incontinent at nightand the first thing I do when I get home from work, is basi-cally dry my sheets with a hairdryer, which is not ideal. Inthat respect, I am fortunate that I do live on my own, but Iwas quite surprised that when I tried to get help for that,it was ‘well, tough’ really . . . it would have been nice ifsomeone could have said, ok, what you need to do this orspeak to so and so or ring this number or do something. Itwas more a case of, ok you had the surgery, you’re alive sogo home. (Patient A)Other patients highlighted the importance of social support at

different stages of the care pathway, from the initial consultationwith their surgeon to their recovery post-discharge from hospital.

I brought somebody with me (to my consultation) and I hadthem taking notes which helped because I was listening faceto face while they were removed from the situation and takingnotes so, when I got home I could go over everything . . . thishad been said and that had been said (Patient E)

I am fortunate that I live with a partner so consequently hewas able to assist me with the day to day, I didn’t have to do



the cooking, when I was still affected by the Tramadol, hehelped me to walk around the flat, because I couldn’t actuallywalk around the flat, not because of the pain, but because themedication was severely interfering with my coordinationand until that was resolved I was not independent, so if I wason my own I don’t know what would have happened!(Patient C).

The need for human contact

Patients mentioned that it would be nice to be provided with detailsof a designated health care professional that could act as their pointof contact if they had any questions or concerns, this was see asparticularly important after discharge from hospital:

It would just be nicer to have a system where you could talkagain, saying I would just like a word with someone . . .(Patient G)

If I felt I had a problem, I would always rather talk to some-body face to face. I like human contact . . . I personally likethe fact of actually saying to somebody, look this has hap-pened, should I be worried or shouldn’t I? (Patient E)

The need for continuity of care

The need for uniformity of care was a repeating theme that keptemerging within the transcripts. One patient had a very positiveexperience because they said they saw the same surgeon at everystage of the pathway from the decision to operate right through todischarge from hospital:

I think probably what helped me with that is because of thefact that I had X (doctor) right from day one so we couldbuild up a relationship between us which we did, I think itwas because we had stuck together right from day one(Patient E)The above patient then went on to say this helped because it

made them feel more confident in asking questions:I felt more confident; stupid things like, my arm was asleepand I couldn’t understand why . . . I felt ok to say to her ‘it’sstupid my arm has gone dead’ . . . it made a big differencethat kind of connection (Patient E).However, this was an exception and most patients felt there were

problems relating to continuity of care:I would like to highlight that I do not feel that there wasenough support when I left the hospital . . . I do believe thatwhen I saw a GP last time on a routine visit that he didn’teven ask the outcome of the surgery. (Patient C)

there wasn’t a process where it’s coordinated with yourgeneral practice . . . I needed my dressing changed, it soundedas if nobody had ever asked them that, it wasn’t the standardthing, I said oh well, I should try and come in in 2 days andmake an appointment, they said no no, if you are having aproblem, ring us up and we’ll try and get the district nurse(Patient G).

I think there was too much of what I would call ‘compart-mentalism’ in that I had neurosurgery and once the neurosur-gery side was complete, that was finished and there was noprovision made for ‘social care’ . . . I’ve just had surgery onmy back it’s left me incontinent, I live on my own and I live

in the loft and I find it hard to walk up and down the stairs.He said it is not really our department, which I think therewas this kind of non-joined up thinking in that we are theneurosurgery department and once the surgery is done, ontothe next one (Patient A)

Discussion

This paper qualitatively examined the health care experiences andexpectations of patients undergoing spinal surgery. Patients iden-tified nine main ‘needs’ they felt played an integral part in enhanc-ing the patient experience including the need for reduced waitingtimes; for better information and preparation; to be proactive; tospeak up and ask questions; to feel safe; to be treated with dignityand respect; and the need for ongoing support; human contact,and; continuity of care.

Our research indicates the significant need for ongoing care andsupport for patients undergoing spinal surgery. One of the moststriking observations of our research was the lack of clear, under-standable information all the way through the patient experience.The role of active patients in their care is emerging and growing.However, for this role to continue and strengthen we need to findeffective ways to communicate with patients and provide themwith information that will not only help them to understand butwill also help them become actively involved in their treatment andrecovery. In our study, patients expressed feelings of uncertainty,frustration and anxiety due to not knowing what to expect andwhat they were permitted to do after their surgery. This was par-ticularly evident at various stages of the pathway. During the initialwait for the date of their operation, patients wanted to be providedwith more reassurance that ‘they were in the system’ and progress-ing to the top of the system. Problems were reported with not beingable to speak to a health care professional to find out what wasgoing on. Patients stated that they were given so many telephonenumbers to call that it became very distressing. In addition, insuf-ficient information was provided about the immediate post-operative recovery period in the hospital. Patients, for example,stated they had not been informed of the need to have an intrave-nous drip after the operation, which in turn generated anxiety insome patients when they awoke with a drip in situ.

In terms of finding out more information, patients mentionedthey often searched on the Internet. Health care professionals, inparticular doctors and nurses, were also considered a useful andvaluable information resource. However, many patients felt theywere not able to speak up and ask questions due to staff being ‘toobusy’ with other work-related demands. In addition, patients feltthey were sometimes not treated with dignity and respect, as exem-plified by the incident when staff spoke over the patient in anotherlanguage while transporting the patient to theatres – a known timeof high anxiety and stress for patients. Problems with continuity ofcare were also cited; patients that saw multiple health care provid-ers felt less able and confident to ask questions because they hadnot established a rapport with their caregiver.

However, while providing appropriate and timely information isimportant to patients, the issues raised in our focus groups indicatethat patients’ concerns go well beyond this to the more fundamen-tal basics of delivering appropriate care. The need for support –including emotional support, physical support and practicalsupport – was a pervasive theme throughout the whole of the care



pathway. Unfortunately, patients felt that they were not alwaysprovided with the support they required. For example, little con-sideration was given to how patients would cope with their careafter discharge from hospital. This was particularly evident in onepatient who lived by himself who was unable to change his dress-ing himself and struggled with other more general aspects of livingdue to mobility problems. Providing appropriate patient careshould not stop simply because a patient has been discharged fromhospital. Discharge from hospital has been recognized to engenderhigh levels of stress and anxiety in patients [11], and frequentlypatients receive limited or poor quality information due to systemfactors including poor information transmission processes, inad-equate training of discharge staff and inadequate time for teachingof staff, not to mention a clear delegation of tasks between staff[12]. This not only raises issues of patient satisfaction but alsohealth safety.

Our findings strongly indicate that patients want to be informedof what should happen before, during and after surgery. Our find-ings also echo that of previous literature that shows patients thatundergo spinal surgery are often dissatisfied with the care theyreceive, in particular the support or information provided [7,8].Our focus was to provide better insight into the experience fromthe patients’ perspective and to examine issues that are not ame-nable to exploration by quantitative research methodology. A par-ticular strength of our study is that adds greater insight into theareas that could be improved in order to enhance patient experi-ence. Providing adequate information and support to patients in away that they can understand is central to how patients can copewith their surgery and the aftercare needed [11,13]. Lack of infor-mation not only impacts on patient behaviours but also on patients’expectations. Failing to meet the care a patient hoped for willimpact on patient satisfaction and thus managing this expectationis critical to health care delivery [14,15].

Patient education has emerged as one of the most importantcomponents of health promotion and disease management[16–18]. However, despite its importance, many patients are stillas noted in our study, expressing considerable difficulty in obtain-ing this information. A key area of improvement should centre onproviding better education for health care professionals on how toimpart health-related information to patients. It is well recognizedthat doctors and nurses underestimate the patient’s desire for andability to cope with information [19]. For example, in recentresearch involving the development of an evidence-based booklet‘your back operation’, the content was based on what cliniciansthought patients would want [20,21]. While evaluations of thebooklet were good, impact on outcome was not. This is consistentwith Coulter et al.’s observations in that although initial reactionsare positive, closer examination reveals that patients want more[19]. They noted that patients seek information with a view to helpthem understand what is wrong, gain a realistic idea of prognosis,make the most of consultations, understand the processes andlikely outcomes of possible tests and treatments, assist in self-care,learn about how to prevent further illness, identify sources offurther information and self-help groups and to identify the besthealth care providers.

These findings suggest that patients need to know what to do inclear and precise terms as well as what to expect and when.Williamson et al. summed this up quite concisely pointing out thatmany spinal patients have high anxiety following surgery about

what they can do and often impose their own restrictions basedsimply on the fear of doing something wrong and undoing thegood work of surgery [22]. Health care professionals thereforeneed to take greater responsibility in ensuring a sufficient level ofinformation is communicated to the patient. One of the mostcommonest uses of the Internet is the gathering of medical infor-mation (and indeed this was demonstrated in our study). A recentreview of information pertaining to back pain highlighted thatmost sources accessed (97%) were of low quality [17]. The con-sequence of this is that patients acquire a range of informationfrom a variety of sources that are often contradictory, may conflictwith current research, and as such lead to maladaptive beliefs andbehaviours [23]. Clearly there is a need for the medical professionto provide this information in a clear format, which is both com-prehensive and sensitive to the patients’ needs. Procedures thatcould appear trivial to health care professionals used to working inthe environment of operating rooms need explanation, forexample, why patients are being transferred to a recovery roomand why they have an intravenous drip. This could help to reducethe fear of the unknown. In addition, in our study, patients men-tioned they did not feel they could always ask questions. Previousresearch suggests that when doctors or nurses encourage patientsto speak up they are more willing to do so, which is particularlyimportant for those questions patients may be concerned aboutcausing offence or embarrassed to ask [24,25].

Our study highlights the need to provide care that is tailored tothe individual needs and preferences of each patient rather thanadopting a ‘one size fits all’ approach. As participants in our studypointed out, some patients want more information than others, andthis need should be respected and accounted for. The causes ofconcern for each patient will vary – for example, they could becognitive (e.g. lack of knowledge), psychological (e.g. feelings ofno sense of control) or physical (e.g. lack of mobility). Interven-tions can be tailored according to each patient; for example, apatient living by himself with mobility problems could be pro-vided with support by a community outreach team. A lack ofsupport could mean the possibility that in terms of rehabilitationafter spinal surgery it is not that patients are not willing to acceptcosts involved (time and money) but simply that they are unable tosecure support during their recovery. The need to get to appoint-ments, time commitments required during rehabilitation and dif-ficulties in maintenance with daily activities is neither easy norsomething they can do independently.

There are several limitations to our study that should be borne inmind when interpreting the results. Our sample size was relativelysmall and comprised largely of middle-aged patients. In order toassess the generalizability of the findings, future research shouldevaluate the care experiences of those that are very young or thosethat are elderly as it is likely that both will have different infor-mational needs and desire for social support. Also, differences inracial or ethnic groups were not examined but warrant additionalresearch. There is also a need to explore the role of the carer infuture research, as the emotional and physical burden on them andhow this affects their quality of life is often ignored. In addition,the attitudes and expectations of health care professionals regard-ing patients’ psychosocial and physical needs should be explored.Previous research within the wider paradigm of patient involve-ment often shows that what patients want and what they get areoften two different things. In the present context, it is therefore



important to ensure that health care professionals’ and patients’expectations align with one another to ensure that care is tailoredto meet the needs and requirements. Future quantitative work suchas RCTs of different forms of information and support systemscould help to clarify the most appropriate ways to do this.

Conclusion

With the increasing emphasis on patient-centred care, identifica-tion of factors that play a role in patient satisfaction and experienceis important. Our findings suggest that there are several measuresthat could be taken in order to considerably improve the careexperience for patients undergoing spinal surgery. In particular,providing ongoing care and appropriate information to patients ina timely manner and ensuring that support and advice is easilyaccessible for those patients that need it are key areas for improve-ment. Future work is needed to investigate the most effective wayof imparting this information to patients in this very important butunder-researched area.

AcknowledgementsThe Clinical Safety Research Unit is affiliated with the Centre forPatient Safety and Service Quality at Imperial College HealthcareNHS Trust, which is funded by the National Institute of HealthResearch. The authors would like to thank all research participantsfor agreeing to take part in the study.

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exploring the care experience of patients undergoing spinal surgery: a qualitative study

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