Psychological Management of Cystic Fibrosis

How a clinical psychologist manages the problems of adultswith cystic fibrosis

Helen Oxley MSc A K Webb FRCP

J R Soc Med 2005;98(Suppl. 45):37–46

Cystic fibrosis (CF) is now well recognized as a disease ofadults as well as children. In 2000 the median age ofsurvival in CF was 32.1 As life expectancy increases, thecomplexities of treatment and the many competingdemands in the lives of adults with CF mean that suchpatients face many challenges. The importance of qualityof life and psychological well being alongside optimalphysical health receives ever-increasing focus in the CFcommunity. This is reflected in the growing numbers ofpsychosocial professionals being employed in units foradults with CF.

The CF Trust in the UK recognizes the psychologicalneeds of people with CF and recommends that CF teamsshould include a psychologist with specialist knowledge ofCF.2 It is suggested that a CF clinical psychology serviceshould include: annual psychological assessments, clinicalpsychology sessions run in parallel with CF clinics, and theprovision of opinion and support in psychological aspects ofcasework by other members of the multidisciplinary team.The report of a joint meeting of the World HealthOrganization and International CF associations also drawsattention to the psychological needs of adult patients, and tothe necessity of having psychologist input to the CFmultidisciplinary team.3

Manchester Adult Cystic Fibrosis Centre (MACFC) is alarge specialist CF unit with around 240 patients and over40 staff in the multidisciplinary team. In 1997 a clinicalpsychologist (CP) was employed on a part time basis. Thispost has been further developed during the last 7 years. TheCP now spends 3 days per week in the CF unit, and hasestablished a wide role within the service. This encompassesnot only the provision of an assessment and therapy serviceto patients, but also an advisory service to staff, offeringguidance on the many aspects of healthcare wherepsychological factors play a part. The role of a CP withadults with CF has not been described in detail in theliterature. This paper therefore outlines the ways in which aclinical psychologist can contribute to the care of adultswith CF. This is preceded by a review of the role of clinical

psychology in healthcare generally, and a brief summary ofthe literature on some important psychological issues foradults with CF.

THE ROLE OF CLINICAL PSYCHOLOGY INPHYSICAL HEALTH SETTINGS

Clinical psychologists in the UK are increasingly becominginvolved in services for those with physical health problems.There are several reasons for this. First, it is recognized thatphysical illness can result in psychological distress. This isparticularly the case in chronic illness. It is suggested thataround 20–25% of patients with chronic medical problemsexperience clinically significant psychological symptoms.4

Psychological therapies may therefore need to be availableto certain people with physical health problems in order toimprove psychological functioning and quality of life.Secondly, it is known that psychological factors such ascognitions, beliefs and attitudes can mediate coping withphysical health problems, and may be more significant thanseverity of disease in this respect.5 Thirdly, it is increasinglyrecognized that psychological factors can influence theoutcome of healthcare in many less direct ways. Adherenceto treatment in chronic conditions is a case in point. Manypsychological factors may be involved here, both within thepatient themselves, but also within the dynamics of therelationship between the patient and the health professionalscaring for them. All the following are known to influencewhether patients follow health advice or not: satisfactionwith the clinician–patient relationship, the degree of patientparticipation in decisions about treatments, the degree towhich similar values are shared, and the right amounts ofknowledge, control and involvement for that particularpatient. As Salmon concludes, ‘all clinicians need to usepsychology’.6

PSYCHOLOGICAL ISSUES IN ADULTS WITH CF

Recent investigation of the psychological issues pertinent toadults with CF has examined several key areas. Theseinclude: the degree of psychological problems experiencedby adults with CF, quality of life issues for these individuals,factors influencing adherence to treatment regimes, andpsychological interventions that might be helpful to adultswith CF. 37

J O U R N A L O F T H E R O Y A L S O C I E T Y O F M E D I C I N E S u p p l e m e n t N o . 4 5 V o l u m e 9 8 2 0 0 5

Manchester Adult CF Centre, Wythenshawe Hospital, Southmoor Road,

Manchester M23 9LT, UK

Correspondence to: Helen Oxley

E-mail: [email protected]

Psychological problems in adults with CF

Attempts to define the types and degree of psychologicaldifficulties in adults with CF are being made, although todate there is much less literature in this area than in thepaediatric field. Against the background of high rates ofpsychiatric disorder and distress in people with chronicphysical illness in general, a number of studies ofpsychological functioning in adults with CF have beencarried out. There have been mixed findings and reviews ofthis work are provided by several authors.7–9 Some earlystudies did suggest elevated rates of psychosocial impair-ment in CF whilst some subsequent research has concludedthat psychological functioning in the majority of adults withCF is similar to that of their peers.8 There may however behigher rates of psychological distress and disorder in olderadults with CF, who have not been as closely investigated todate. Pfeffer et al.9 discuss some of the difficulties that maybe seen in older CF patients including: low self esteem, ahigher prevalence of anxiety and depression, relationshipdifficulties and stress associated with transplantation. Theyconclude ‘the evidence suggests that the psychological andpsychosocial functioning of people with CF is similar to thatof well people, until disease becomes severe’. Research hasalso investigated which factors may protect adults with CFfrom psychological difficulties and it is suggested that use ofavoidant or repressive coping strategies may be associatedwith better psychological outcome in CF.9,10 Nearly allauthors investigating the psychological health of adults withCF conclude that more research is needed. There are alsopotential methodological problems in this area of research.The full range of psychological stresses and difficultiesexperienced by adults with CF may not be picked up bysome of the existing global measures used, for examplescales of anxiety and depression symptoms. Pfeffer et al.9

also point out that older studies in this area are becomingless relevant as treatment and prognosis in CF changes.

In summary, there may be an increasing need forpsychological therapy for adults with CF as patients growolder and disease becomes more severe. This may benecessary to treat psychological difficulties, or preferably toprevent such problems developing, through work onemploying the most effective coping strategies to adapt tothe changing demands of CF. Even those younger patients,with rates of psychological distress similar to that of thegeneral population, will of course require access topsychological therapy at times.

Quality of life in adults with CF

A related area of the literature on adults with CF deals withthe somewhat broader term of ‘quality of life’ (QoL).Much research is being carried out in this important area,and specific scales to measure subjective QoL in CF have

recently been developed.11,12 An exhaustive review of thisliterature is outside the scope of the current paper.However, one important question investigated in this areais the relationship between severity of illness and quality oflife in adults with CF. Pfeffer et al.9 reported variablefindings, but on the whole a poor correlation betweensomatic health measures and generic quality of lifemeasures. They conclude that the impact of CF upon anindividual’s life will depend on many factors including theirsubjective health perception, coping style, and social/psychological support. They also suggest that adults withCF usually adapt successfully to their disease over time, andthat QoL does not suffer until disease becomes so severethat they cannot adapt. They propose that changes indisease severity and rate of change may have a moresignificant impact on QoL rather than the severity of diseaseper se. Another study by Gee et al.13 used the CF specificmeasure the CFQoL11 and did show a progressivedeterioration in many domains of QoL as CF diseaseprogresses. Fears about the future were however presentacross the whole age range in this study. Work by Staab andcolleagues also suggests the importance of subjective healthperception and ways of coping, in determining QoL inadults with CF.14

In summary, the importance of quality as well asquantity of life for adults with CF is well recognized andreflected in a growing body of literature. New measureshave been developed which will help elucidate the non-medical difficulties experienced by adults with CF, as wellas being used to evaluate the benefits of treatments.Findings from the research in the area of QoL point to arole for psychological work with adults with CF byclinicians, i.e. in helping patients to cope with/adapt mosteffectively to changes in health and to deal with fears aboutthe future. This may be particularly salient for older adultpatients, who often face multiple challenges.

Adherence to treatment in adults with CF

A number of studies have investigated factors affectingadherence to treatment in CF. Early work in this importantarea tended to focus on demographic and clinical variablessuch as age and gender in order to try and explaindifferences in adherence (or compliance) to treatments.Recent research has examined the more complex multiplefactors that may determine adherence and useful reviews ofthis literature are published by Abbott and Gee,15 Kettler16

and Pfeffer.9 Factors investigated include: motivation,reinforcement, side effects of treatments, perceptions ofseverity of illness and personal control, knowledge, copingstyle, health beliefs, worry, avoidance, social reasons,struggles for power with clinicians and simple lack of time.The notion of educated non-adherence has also been38


explored by different authors, e.g. Koocher17 and Lask.18

Kettler et al. conclude ‘only a small proportion of thevariance in adherence has been accounted for in theliterature’.16 They point out that whilst we know somethings—for example that there is poorer adherence to themost complex and lengthy treatments, and that people whoworry more about disease are more adherent totreatment—there are very many unanswered questions inthis field as yet. Most authors point to the need for morehigh quality research, focusing on areas such as patients’individual beliefs, perceptions and coping strategies, andutilizing recent theoretical models of health behaviour. Insummary, although adherence to treatment in CF is clearlymultifactorial, psychological variables seem to be emergingas of paramount significance. This has important implica-tions for the role of a CP working with adults with CF, whomay be able to help patients (and health professionals) toaddress unhelpful beliefs and behaviours, in order to tacklethe common difficulties in this area.

The effectiveness of psychologicalinterventions in adults with CF

The research evaluating psychological interventions inadults with CF is very limited. Two earlier studies suggestsome benefits of ‘stress management’ type interventionswith such patients.19,20 More recently, Hains et al.21 carriedout an investigation of the effectiveness of a cognitivebehavioural intervention (cognitive restructuring andproblem solving) for young adults with CF. This followeda previous study of adolescents with CF where beneficialeffects of a similar intervention were shown.22 More mixedfindings were reported for the effectiveness of theintervention in adults. However, this study described onlyfour patients, and of these only one had clinical levels of thetarget problems, such as anxiety and anger. The authorsdescribe some of the difficulties in measuring the outcomeof a therapeutic intervention in CF. For example, theconcerns reported by patients are often quite personspecific, and existing global measures may not be sensitiveenough to pick up such problems or reflect change. Theseauthors concluded that while cognitive behaviouraltechniques may be applied in CF, further research in thisarea is needed. Glasscoe and Quittner23 also attempted toevaluate the effectiveness of psychological interventions inCF in a recent Cochrane review. They were able to identifyonly eight eligible studies and almost all of these related tochildren with CF not adults. Whilst there was someevidence for the usefulness of behavioural approaches inimproving emotional outcomes for children and adoles-cents, these authors had to conclude again that furtherresearch was needed, specifically multi-centre approaches toenhance the very limited research available currently. More

work is also needed to evaluate the effectiveness ofinterventions to improve adherence to treatment in CF.Few conclusions can be drawn about this from the literatureas yet. Some authors do however suggest some usefulgeneral ways in which problems with adherence might betackled.24

In summary there is little evidence available to guide thechoice of psychological interventions for adults with CFwithin the field of CF itself. There is, however, a reasonableevidence base for at least one type of intervention, cognitivebehaviour therapy (CBT), in many areas of psychologicalhealth. Recent clinical practice guidelines from the UKDepartment of Health25 cite evidence of the effectiveness ofCBT for several problems including: depression, panic,anxiety, post-traumatic stress symptoms, obsessionalproblems, chronic fatigue, chronic pain and some eatingdisorders. They also report effectiveness of other forms ofpsychological therapy (e.g. counselling, interpersonaltherapy, psychodynamic therapy) for some forms ofdepression. In general, the guidelines point to the needfor skilled and experienced therapists, and an adequatenumber of therapeutic sessions, particularly where pro-blems are complex. One approach that has also been shownto be useful where behaviour change is required is thecognitive behavioural technique of motivational interview-ing (MI). This has been found to be effective mainly in thearea of addictions, but is also now being used in chronicillness, and has been described in detail by Bundy.26 Thistechnique is gaining popularity in the field of CF and mayhave much to offer adults who are seeking to change theirbehaviour—not only in terms of adherence to prescribedtreatment regimens, but also perhaps other aspects ofbehaviour such as optimal eating patterns in CF.

In general, while those adults with CF withpsychological difficulties may have some problems specificto CF, there seems no reason why they should not benefitfrom those interventions that have already been shown to beuseful for those with psychological distress. One CPworking in the field of chronic ill health, has stated that‘CBT can be applied to the assessment and treatment ofalmost every chronic medical problem’ and explains whyCBT may be particularly suited to such patients.4 Therewill, of course, be many therapists throughout the worldworking with CF from different theoretical and clinicaltherapeutic backgrounds. For example, Miller27 has out-lined the potential role of psychodynamic psychotherapy forpatients with CF. Many other professionals as well as CPs,including those from the fields of social work, palliativecare, nursing, psychiatry, and family therapy, will also beoffering great support to adults with CF in centres aroundthe world. This work is not reviewed here. As the currentpaper addresses the contribution of clinical psychology tothe problems of adults with CF, and as HO specializes 39


largely in cognitive behavioural therapy, there hasnecessarily been a focus on this approach.

Some of the major psychological issues for adults withCF have been outlined above. There are many otherimportant matters with strong psychosocial elements forthis patient group. These include: the impact of ‘late’diagnosis; transition between services; issues of fertility andreproduction; the role of families of adult patients; issues oftransplantation; and terminal care. Much of the valuablework on psychological issues for children with CF is alsorelevant to those working with adults. Additionally, thereare important psychological considerations for healthprofessionals working within the field of CF. Discussionof research and findings in all these areas is outside thescope of this paper, but is described in other sources, e.g.Bluebond-Langner et al.28 There is, however, clearly a rolefor psychosocial input in very many areas for adults withCF, and a need for psychosocially trained professionals totranslate research findings into meaningful clinical inter-ventions for this group of patients.

The rest of this paper will go on to describe in detail thework of one clinical psychologist working with adults withCF, in the large specialist centre in Manchester, UK.

THE CLINICAL PSYCHOLOGY SERVICE AT MACFC

The CP was employed by the clinical director for MACFCin 1997. The major aims of this development were toprovide a specialist psychological assessment and therapyservice to patients and advice to the multidisciplinary team(MDT) on psychological issues. Previously, individualsrequiring psychological help had to be referred to their localclinical psychology service. However, this was unsatisfac-tory for two reasons. First, there were often very longwaiting times for appointments, sometimes over 12months. Secondly, it was impossible to get the requiredliaison and joint working between the psychologicaltherapist and the other health professionals involved, whichis so important when carrying out psychological work withpatients with medical conditions. Funding for an ‘in house’CP was therefore obtained. The CP is based in the CF unitalong with the rest of the large MDT. The work of thespecialist CP can be categorized as follows:

. Therapy service to referred adult CF patients

. Annual psychological reviews with these patients

. Work with and via the rest of the CF multidisciplinaryteam

. Other roles

THERAPY SERVICE TO REFERRED PATIENTS

Approximately 40% of the time of the CP is currentlyspent in face to face work with referred patients. The

process and practicalities of seeing the CP at MACFC areas follows:

. Referral: Any patient can self refer to the CP at anytime. A leaflet is available in clinic and on the ward todescribe the role of the CP and what kind of things he/she may be able to help with. Any member of the CFteam may also refer to the CP. Often there is someinformal discussion before a referral to see if this isappropriate. As the social workers at MACFC do muchsupportive work with patients in the unit, and usuallyknow them well, they often carry out informalscreening to determine whether referral to the CPmight be helpful. Further screening for suitability ofpsychological intervention is then carried out by the CPat initial assessment, so very few initial referral orexclusion criteria are required. Further referrals arenow also picked up through annual psychologicalassessments

. Assessment: An initial assessment is carried out by the CPvery soon after referral. There is no waiting list. Theassessment session aims to be very informal and non-threatening, as patients occasionally, understandably,have some reservations about seeing the CP! The aimsof assessment are to reach a ‘formulation’ of anydifficulties the person with CF may have and to discusshow the CP may be able to help if this is wanted. Aformulation of difficulties provides a way of under-standing the various psychological factors contributingto a person’s difficulties at the time, usually representeddiagrammatically and shared with the patient. This40


CFand other childhood events

FTeasing in childhood

Felt different from others

FLow self esteem

Tendency to need to achieve high standards to feel OK

FWorseninghealth C

Episode of depression when difficulties at work

FSymptoms of depression ^ reduced motivation

^ negative thoughts re self/future^ reduced activities/interests

Fless exercise, less treatmentfewer distractions/rewarding timesEDD

Figure 1 An example of formulation of problems with depression

in person with cystic fibrosis (CF)

often helps patients understand how problems havedeveloped and how they are being maintained. Anexample of a somewhat simplified formulation for a CFpatient who is depressed is shown in Figure 1

. Therapy/intervention: Once it is agreed by the CP andthe patient that psychological intervention is neededand wanted, further sessions are arranged. This mayrange from only one or two sessions for a relativelystraightforward problem of sleep disturbance, to amore lengthy course of therapy, e.g. 20 sessions forproblems such as long-standing depression or very poorself esteem. Occasionally it is decided that interventionby the CP is not required and in a few instances areferral has been made to other services such as localpsychotherapy services or psychiatry. Most of theinterventions offered by the CP at MACFC are based inCBT. This is a structured therapy which focuses onhelping people make changes in unhelpful behaviours,thoughts and underlying beliefs. Details and examplesof interventions are described later

. Evaluation: Is routinely carried out at an individuallevel. This may include the use of standardizedquestionnaires, such as measures for anxiety anddepression, if these are appropriate. Sometimes suchmeasures are not sensitive enough to pick up specifictarget problems, e.g. difficulty in coping with intrusivefears about the future with CF/tensions with partnerabout health issues/difficulties with feelings about CFor treatment, etc. This is one reason why group dataregarding outcome of therapy for these particularpatients are not available. The individual’s subjectiveview of the usefulness of therapy is always discussed. Ifa patient does not report benefits, sessions are ended,with the understanding that re-referral to the CP can bemade at any time.

Details of patients and types of problems seenby the CP at MACFC

To date 127 adult patients have been referred to the CP atMACFC. Of these only a handful have declined to be seen.Contact with the rest has ranged from assessment withbrief advice only, to longer courses of psychologicaltherapy (range 1–46 sessions). Some patients have beenreferred more than once over the 7 years the CP has beenin post, and a few on several occasions (maximum five).The CP recently carried out an audit of 155 episodes ofassessment/therapy with 102 referred patients over asample five year period.29 The demographic characteristicsof these patients are shown in Table 1. These figuresindicate that a wide range of patients at MACFC arereferred to the CP.

Psychological presenting problems of adultsat MACFC

The main presenting problems for all assessments carriedout by the CP over the sample 5 year period are shown inTable 2. Interpretation of the frequency of presentation ofeach problem must be made with some caution—categorization of patients’ main problem was oftennecessarily somewhat subjective, as many patients hadmultiple presenting difficulties at the same time. However,Table 2 does give a flavour of the range of difficulties seenby the CP at MACFC, and how often these difficulties areseen. Since this audit was conducted the service to patientsbeing referred for lung transplantation has been developedfurther, and all such patients are now also routinely offeredpsychosocial input. This is provided by either the CP or byone of the unit social workers.

Case illustrations

The case examples described in case histories below give aflavour of the complex nature of problems presenting to theCP at MACFC, and the approaches used in order to helpwith these difficulties. Some further examples ofpsychological problems, and the interventions carried outare also shown in Table 3. Sometimes psychologicalintervention has a very practical flavour, with cognitiveand behavioural change as the focus. At other timespatients’ needs are more for space and time to explore theirdifficulties with someone outside their immediate circle, toresolve difficult issues in their own minds, or at leastrecognize the validity of feelings and gain some support.

Case history: Mark is a 23-year-old man with CF. Hehas good lung function (FEV1=84% predicted), and weight(body mass index=24). He was previously a fairlyinfrequent attender of the unit, but following problemswith gallstones and severe pain (now resolved) he wascontacting clinic frequently. He was presenting with manydifferent physical symptoms, was clearly very worried abouthis health, and needed a lot of reassurance. The CP wasasked to see Mark. Psychological assessment revealed a 2month history of panic attacks, since the period of acuteillness, which coincided with some family stress. Mark wasexperiencing headaches, chest tightness, palpitations and an 41


Table 1 Patient characteristics (for total referrals n=155).

Males referred=37%, females=63%

Mean SD Range

Age 27.7 7.8 17–50

FEV1

% predicted 56.8 23.9 14.9–120.8

BMI 20.65 2.94 14.9–37

FEV, forced expiratory volume; BMI, body mass index; SD, standard deviation

upset stomach. His fears at the time of assessment were thateither that his CF had worsened, or that he had developedsome other condition such as a heart problem, or‘something wrong with my brain’. He had had manymedical investigations, all of which were negative, but wasconcerned that these might have missed something. He hadbecome anxious about leaving the house, was havingdifficulty sleeping and felt very unwell and unhappy inhimself. His anxiety score on the Hospital Anxiety andDepression Scale (HADS) was 18/21, indicating a severelevel of symptoms. Psychological intervention was started

straightaway. The main focus of this was some detailededucation about panic attacks, how and why they occur, thephysical symptoms that can be manifested, and how to dealwith catastrophic (but inaccurate) thoughts about animpending heart attack or other medical disaster. Thistook place over 3 sessions. Mark responded very well tothis approach, became very well informed about hissymptoms and his panic attacks stopped. His HADanxiety score post intervention was 7 (normal range).The CP did however continue to see Mark for some otherpsychological issues that emerged during assessment. He did

42


Table 2 Problems presenting to the clinical psychologist at Manchester Adult Cystic Fibrosis Centre

Main presentation Details % of referrals*

(n)

Anxiety problems Includes: panic attacks, phobias, severe worry, anxiety about

medical procedures, trauma after medical events such as

haemoptysis or pneumothorax

32% (47)

Depression or significant low mood Includes: mood changes significant enough to interfere with

normal functioning and quality of life

31% (46)

Problems coping with CF/adjusting to changes Includes: anger at CF, reactions to late diagnosis, reactions to

deteriorating health, news of need for transplantation

9.5% (14)

Other psychological problems/non health life events Includes: low self esteem, previous abuse, anger management,

post-traumatic stress

9% (13)

Relationship problems Includes: problems with partners/parents/children 4% (6)

Substance misuse Includes: alcohol and illegal drugs 3% (4)

Sleep problems Includes: difficulty falling asleep/frequent waking 3.5% (5)

Problems with health behaviours Includes: adherence to treatments, problems with hospital

admissions/outpatient clinics, ‘inappropriate illness behaviour’

3% (4)

‘End of life’ issues Includes: coping with ventilation, making decisions about

future care, concerns regarding transplantation

2% (3)

Weight/eating problems Includes: disordered eating, body image problems, need for

weight gain/loss

2% (3)

Pain Includes: problems managing chronic pain 0.5% (1)

Self harm Includes: non-suicidal self harming behaviour 0.5% (1)

*Percentages have been rounded up/down

CF, cystic fibrosis

Table 3 Other examples of psychological interventions by the clinical psychologist at Manchester Adult Cystic Fibrosis Centre

Presenting problems Possible interventions

Chronic insomnia Relaxation training, education in better sleeping habits, work on dealing with

worrying

Fears about medical procedures, e.g. venepuncture,

surgery, use of non-invasive ventilation

Training in anxiety management techniques, help in employing most preferred

coping strategies (e.g. information seeking/gaining a sense of control/distraction

techniques/imagery exercises)

Low self esteem Exploration of contributing factors including early life. Cognitive therapy techniques

to challenge unhelpful maintaining thoughts, e.g. ‘I’m useless at everything’ and

attitudes, e.g. ‘I must do everything to please others or I won’t be liked’

Anxiety following medical events, e.g. severe

hypoglycaemia, pneumothorax, haemoptysis

CBT for any post-traumatic stress symptoms. Identification of unhelpful coping

strategies, e.g. keeping blood sugars high/excessive avoidance of activity.

Identification of more helpful coping strategies to manage understandable

anxieties and regain sense of control

CBT, cognitive behaviour therapy

later have some further anxiety symptoms following anepisode of haemoptysis, which was understandablyfrightening. An additional session on anxiety managementwas carried out with the CP, in conjunction with inputfrom the physiotherapy team to correct problems withhyperventilation. Mark’s anxiety symptoms ceased again,and he was discharged home. There continue to be someunderlying factors that probably make Mark vulnerable toanxiety at certain times, and he continues to discuss thesewith the CP. However, both Mark and the CP feel that therelatively short input for his panic disorder prevented anescalation of medical anxiety, reassurance seeking, frequentattendance and psychological distress. Mark was happy forinformation about these difficulties to be shared with therest of the MDT, which allowed planning for medical andpsychological care to be conducted in parallel.

Case history 2: Alison is a 27-year-old woman with CF(diagnosed as a baby). She has a long history of problemswith depression and has taken anti-depressant medicationon several occasions apparently without any benefit. She haspoor lung function and low weight. She was referred to theCP for help with depression, as the team had noted her lowmood, with frequent tearfulness, and were also concernedthat she may not be carrying out treatment at home, as shedeteriorated so quickly between admissions. Assessment bythe CP revealed a severe level of depressive symptoms,with some suicidal thoughts. Alison felt low most of thetime, and many factors contributed to this including family,work, social and health issues. She was single and hadlimited social support. She tended to sleep much of the timeto try to escape from her problems. She did very littletreatment at home as she felt so tired and unmotivated. Shefelt bad about this as she knew her health was declining, andtended to avoid coming to the clinic as she felt she waswasting people’s time. Alison was clearly in a vicious circleof depressed mood, lack of energy, poor adherence to verynecessary treatment and subsequent feelings of guilt andfailure, which then exacerbated her low mood and poorhealth. Psychological intervention took place over manymonths. Initial goals were to gradually increase activity andself care levels, with very small planned goals over severalmonths. This did enable Alison to look after herself a littlebetter, and she improved sufficiently to be able to do somefurther work looking at her feelings of failure, fears for thefuture and guilt. Cognitive therapy helped her challengesome of her negative thoughts, and to learn not to be sohard on herself. Alison’s mood did improve further overtime. However, many very real problems persisted, notleast her declining health. This leaves Alison with avulnerability to becoming low quite often, and with a needfor continued support. Sessions are therefore available toAlison whenever she feels herself becoming more low, to

use in the way she feels most helpful. The unit socialworker is also able to provide much valued support to bothAlison and her family.

ANNUAL PSYCHOLOGICAL ASSESSMENTS WITHPATIENTS AT MACFC

A recent goal of the CP at MACFC has been to carry outannual assessment of patients attending the unit. Approxi-mately 10% of the CP’s time at MACFC is now spent incarrying out annual assessments and discussing these withthe CF MDT. This unfortunately does not allow for allpatients to receive psychological annual review at present,although steps are currently being taken to offer this tomore patients in the future.

The annual assessment process at MACFC

This process has been in development for several years atMACFC, and is now a nurse-led service which includesseveral stages: (a) assessment by all disciplines in the team,carried out in a half-day session along with all the necessarymedical investigations; (b) a detailed discussion of eachpatient by all disciplines, to share information, highlight anycurrent health or psychosocial problems, and establish teampriorities for the year, and (c) an extended clinicappointment between the patient and one of the unitdoctors, to feedback findings from the annual assessment,establish joint priorities and agree an action plan for theforthcoming year.

Psychological annual review

Each discipline at MACFC carries out its own assessment orreview with the patient. These have been tailored to avoidunnecessary repetition for the patients. Details of thepsychological annual review by the CP are shown in Table 4.A wide range of questions are asked, about successes andproblems in managing CF, as well as about any emotionalproblems that might be present. Where significantpsychological difficulties/issues are highlighted by theannual review process, or where a patient wants toimprove their coping skills further, the CP will then see thepatient again if they so wish, to discuss this in more detail.Examples of some psychological issues emerging fromannual assessments and the action taken are shown inTable 5. Since the CP has been able to carry out annualassessments more interventions for adherence typeproblems are now being carried out.

Potential problems and benefits ofpsychological assessments

The team at MACFC is aware that the annual assessmentcan be a stressful time for patients30 especially those whocope largely by trying to forget about CF. For others there 43


is the anxiety that new problems might be found ordeterioration highlighted. The CP is aware that thepsychological review must not be intrusive to patients.These assessments are tailored closely to the wishes of eachindividual patient, to try to ensure that unwanted topics arenot pursued, or that any avoidant coping mechanisms (thatare helpful or adaptive) are not threatened. This makes thepsychological annual assessment a complex process,requiring experience and sensitivity.

Benefits of an annual psychological assessment processare that difficulties may be picked up that are not alwaysseen as reasons for referral to the CP, especially by patients.These include: difficulties adhering to treatment, difficulties

with motivation, difficulties coping with hospital admissionsor outpatient appointments. Where problems are high-lighted, solutions can be sought. At MACFC this would bedone by either the CP or the patient’s allocated socialworker in conjunction with the MDT, depending on thenature of the difficulties. Another advantage of CP annualassessment is that it allows the patient to meet the CP, tonormalize this process in the unit, to dispel some myths andfears about seeing the CP (hopefully), and to make it easierto access the CP whenever necessary. It also gives patientsthe opportunity to report that they are coping veryeffectively and to receive reinforcement of their ownstrategies and positive feedback in these circumstances.

44


Table 4 Topics covered by the clinical psychologist annual review at Manchester Adult Cystic Fibrosis Centre

Area covered Details

Psychological difficulties now or over the last year Impact of physical health on emotional health and quality of life (QoL), any particular

current stresses or problems

Problems with medical procedures or receiving care Problems with needles, anxiety about planned procedures, difficulties with hospital

admission or outpatient appointments, anxieties about tests or results

Coping style/health beliefs How cope with problems/cystic fibrosis (CF) generally—approach versus avoid,

active versus passive, attitude towards CF and treatment

Treatment issues Any problems with treatment regimes, beliefs about specific treatments, e.g.

benefits, disadvantages, etc.

Relationship with the multidisciplinary team Any difficulties experienced, amount of information, control and involvement

preferred

Any other issues raised For example, family, fertility, transition, diagnosis, transplantation, QoL,

bereavement, etc.

Table 5 Examples of problems identified at psychological annual assessments, actions taken and outcome

Problems identified at annual

assessment

Interventions by the CP Outcome of intervention

Low BMI and team concern

about this. Patient reluctant

to consider NG/PEG feeding

but struggling to maintain

weight without this. Team

and patient feeling frustrated

by apparent lack of progress

on this issue

Motivational interviewing approach identified (and

enhanced) good level of motivation to work on this

issue. Joint intervention by the CP and the CF dietician

has consisted of: further detailed advice on nutrition,

small behavioural goals to increase calorie intake,

identification of any problems that arise in carrying out

this behaviour change (e.g. negative thoughts, poor

motivation), fortnightly telephone reviews with the CP to

maintain focus and progress

Patient has managed to maintain recent

weight and is pleased with this, though

finds it hard to meet goals at times.

Recently a discrepancy between medical

goal of increased weight and patient’s

goal of maintaining weight has been

identified. Now being explored by the

team, CP and patient together, to agree a

more shared goal

Poor adherence to treatment at

home. Patient responds well

to treatment in hospital but

lung function rapidly

deteriorates at home. Team

concerned about this pattern

and patient aware of this

concern, but reported had a

‘mental block’ about

treatment

Detailed and lengthy discussion with patient about

attitudes to health and treatment revealed specific

idiosyncratic beliefs that fostered poor adherence.

Patient had fears about developing resistance to

antibiotics so preferred sporadic use. Patient also felt

that if took medication at home ‘CF controls me’. Joint

intervention with CF consultant was therefore arranged.

Specific, detailed education about antibiotic use was

provided by the CF consultant. This was followed by

work with the CP on beliefs and anxieties about

treatment

Patient was able to change behaviour in

several ways, and now takes almost all

medication at home (previously took

rarely). FEV1 has been maintained out of

hospital. Patient pleased with own

success, and feels better about self,

though still finds taking treatment hard.

Team has more understanding of the

reasons behind adherence problems and

sees objective benefits of change

BMI, body mass index; NG, nasogastric; PEG, percutaneous endoscopic gastrostomy; CP, clinical psychologist; CF, cystic fibrosis

WORK WITH THE CF TEAM

A substantial proportion of the CP’s time (approximately40%) is spent in working with the rest of the CF team, inorder to meet the psychological needs of the patients atMACFC. They also help the team carry out theirdemanding and sometimes stressful roles, in caring foradults with CF. Over recent years, the work with the staffteam has developed, usually in response to requests fromstaff for particular kinds of input. Work with the CF teamby the CP is illustrated in Box 1.

OTHER ROLES OF THE CP AT MACFC

In addition to the direct work with adults with CF, and theinput with the CF team, aimed at improving health andQoL for these patients, the CP at MACFC has some furtherroles which include:

. Service development: At present projects are underway inMACFC to develop the service further in many areasincluding the following: fertility and reproduction,transition between paediatric and adult services, liaisonwith transplant services, palliative care, diabetes, andchanges to the policy on segregation of patients. TheCP has a role in each of these initiatives, to give apsychological viewpoint where possible

. Staff stresses survey: The CP at MACFC carries out anannual survey of staff to determine the nature of anysignificant work-related stresses over the previous year.Results of the survey are fed back to staff each year, anda planning meeting held to address any identifiedproblems. Details of this process have been outlinedelsewhere31

. Collecting patients’ views about MACFC: In conjunctionwith one of the unit social workers, the CP undertakesan annual survey of patient satisfaction with MACFC.This is to try to make sure that care is responsive to theneeds of the patients attending the unit, and to helppatients feel involved and consulted with respect totheir care.

The requirements of the MACFC for clinical psychologytime have recently been reviewed.32 The current post of0.6 wte (whole-time equivalents) does allow for all referredpatients to be seen, without a waiting list developing.However, this time does not allow for all tasks suggested bythe CF trust to be carried out. The staff team at MACFCincreasingly request more frequent access to the CP todiscuss the care of patients. The CF trust recommends atotal of 2 wte CP for a unit the size of MACFC, and whilethis may be difficult to achieve in practice, it may indeedreflect the time needed for all the potential roles of a CP tobe fulfilled. This is perhaps one reason why research by

clinicians working with adults with CF (for example toelucidate the psychological difficulties experienced and theeffectiveness of interventions offered) has lagged behindresearch in other areas. This must be remedied in the nearfuture, perhaps through the use of multi-centre initiativesby psychosocial professionals in CF units, as suggested in therecent literature.

CONCLUSIONS

A specialist clinical psychologist can manage the problems ofadults with CF in the following ways:

. By providing evidence based psychological therapy for awide range of difficulties. This therapy is delivered withspecialist knowledge of CF, and as an integral part ofthe whole multidisciplinary team

. By helping patients find the best individualized way ofcoping with CF at any particular time, throughdiscussion of their attitudes, beliefs and perceptions,to help adapt to changes, prevent psychologicalproblems developing and improve overall quality of life

. By helping patients make desired changes to specificbehaviours, such as improved adherence to treatment,or reduction of unhelpful habits, in order to maximizehealth and/or psychological functioning

. By helping to ensure that wherever possible patients areactive partners in care, making their own informeddecisions, and that patients have the right amount ofinformation, control and involvement for theirparticular needs 45


Box 1 Input of the clinical psychologist (CP) with the multidisciplinary

team (MDT) at Manchester Adult CF Centre

. The CP provides information and advice to the MDT on

psychological issues

This would include information on: patients’ individual psychological

problems/needs/coping strategies; beliefs about adherence and

health care; dealing with problematic behaviours: optimizing the

patient–team relationship, how to apply psychological principles/

techniques in own work with patients

The CP attends several team meetings in order to discuss these

issues including: MDT in-patient reviews, regular discussion of

complex out patients’ needs; detailed MDT discussion of each

patient’s annual assessment

. The CP is available to any team member on an individual basis

to discuss patient care

This enables better co-ordination of health and psychosocial care,

helps other team members utilize psychological information, and often

involves joint sessions with patients

. The CP provides education on psychological issues to the MDT

Topics covered to date include: anxiety, depression, adherence,

management of difficult behaviours

. The CP contributes to staff support

The CP is also available to the whole team to discuss any difficulties

that arise in the care of patients or work as a team

. By helping patients with the most severe disease copewith difficult times, by providing psychological support,and help with decision making and problem solving

. By providing screening for psychological difficulties,and offering early intervention for any developingproblems, through annual psychological review

. By providing the rest of the CF MDT with informationand advice on a wide range of psychological matters, toensure that patients’ psychological needs are known andtaken into account, and to facilitate co-ordinatedholistic care of these individuals

. By supporting the team in maintaining optimal workingrelationships with patients, through the application ofpsychological principles

. By monitoring any staff stresses and helping the teammanage these

. By contributing to the ongoing development of CFservices, to ensure that psychological issues areconsidered when planning new initiatives or improvingexisting care

. By contributing to research in the field of CF, with theaim of further understanding the psychological issuesfor adult patients, identifying the actual clinicalimplications of these, and evaluating the effectivenessof any interventions delivered in practice.

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Psychological Management of Cystic Fibrosis