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How a clinical psychologist manages the problems of adults with cystic brosis
Helen Oxley MSc A K Webb FRCP

J R Soc Med 2005;98(Suppl. 45):3746

Cystic brosis (CF) is now well recognized as a disease of adults as well as children. In 2000 the median age of survival in CF was 32.1 As life expectancy increases, the complexities of treatment and the many competing demands in the lives of adults with CF mean that such patients face many challenges. The importance of quality of life and psychological well being alongside optimal physical health receives ever-increasing focus in the CF community. This is reected in the growing numbers of psychosocial professionals being employed in units for adults with CF. The CF Trust in the UK recognizes the psychological needs of people with CF and recommends that CF teams should include a psychologist with specialist knowledge of CF.2 It is suggested that a CF clinical psychology service should include: annual psychological assessments, clinical psychology sessions run in parallel with CF clinics, and the provision of opinion and support in psychological aspects of casework by other members of the multidisciplinary team. The report of a joint meeting of the World Health Organization and International CF associations also draws attention to the psychological needs of adult patients, and to the necessity of having psychologist input to the CF multidisciplinary team.3 Manchester Adult Cystic Fibrosis Centre (MACFC) is a large specialist CF unit with around 240 patients and over 40 staff in the multidisciplinary team. In 1997 a clinical psychologist (CP) was employed on a part time basis. This post has been further developed during the last 7 years. The CP now spends 3 days per week in the CF unit, and has established a wide role within the service. This encompasses not only the provision of an assessment and therapy service to patients, but also an advisory service to staff, offering guidance on the many aspects of healthcare where psychological factors play a part. The role of a CP with adults with CF has not been described in detail in the literature. This paper therefore outlines the ways in which a clinical psychologist can contribute to the care of adults with CF. This is preceded by a review of the role of clinical
Manchester Adult CF Centre, Wythenshawe Hospital, Southmoor Road, Manchester M23 9LT, UK Correspondence to: Helen Oxley E-mail: helen.oxley@smtr.nhs.uk

psychology in healthcare generally, and a brief summary of the literature on some important psychological issues for adults with CF.
THE ROLE OF CLINICAL PSYCHOLOGY IN PHYSICAL HEALTH SETTINGS

Clinical psychologists in the UK are increasingly becoming involved in services for those with physical health problems. There are several reasons for this. First, it is recognized that physical illness can result in psychological distress. This is particularly the case in chronic illness. It is suggested that around 2025% of patients with chronic medical problems experience clinically signicant psychological symptoms.4 Psychological therapies may therefore need to be available to certain people with physical health problems in order to improve psychological functioning and quality of life. Secondly, it is known that psychological factors such as cognitions, beliefs and attitudes can mediate coping with physical health problems, and may be more signicant than severity of disease in this respect.5 Thirdly, it is increasingly recognized that psychological factors can inuence the outcome of healthcare in many less direct ways. Adherence to treatment in chronic conditions is a case in point. Many psychological factors may be involved here, both within the patient themselves, but also within the dynamics of the relationship between the patient and the health professionals caring for them. All the following are known to inuence whether patients follow health advice or not: satisfaction with the clinicianpatient relationship, the degree of patient participation in decisions about treatments, the degree to which similar values are shared, and the right amounts of knowledge, control and involvement for that particular patient. As Salmon concludes, all clinicians need to use psychology.6
PSYCHOLOGICAL ISSUES IN ADULTS WITH CF

Recent investigation of the psychological issues pertinent to adults with CF has examined several key areas. These include: the degree of psychological problems experienced by adults with CF, quality of life issues for these individuals, factors inuencing adherence to treatment regimes, and psychological interventions that might be helpful to adults with CF.

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Psychological problems in adults with CF

Attempts to dene the types and degree of psychological difculties in adults with CF are being made, although to date there is much less literature in this area than in the paediatric eld. Against the background of high rates of psychiatric disorder and distress in people with chronic physical illness in general, a number of studies of psychological functioning in adults with CF have been carried out. There have been mixed ndings and reviews of this work are provided by several authors.79 Some early studies did suggest elevated rates of psychosocial impairment in CF whilst some subsequent research has concluded that psychological functioning in the majority of adults with CF is similar to that of their peers.8 There may however be higher rates of psychological distress and disorder in older adults with CF, who have not been as closely investigated to date. Pfeffer et al.9 discuss some of the difculties that may be seen in older CF patients including: low self esteem, a higher prevalence of anxiety and depression, relationship difculties and stress associated with transplantation. They conclude the evidence suggests that the psychological and psychosocial functioning of people with CF is similar to that of well people, until disease becomes severe. Research has also investigated which factors may protect adults with CF from psychological difculties and it is suggested that use of avoidant or repressive coping strategies may be associated with better psychological outcome in CF.9,10 Nearly all authors investigating the psychological health of adults with CF conclude that more research is needed. There are also potential methodological problems in this area of research. The full range of psychological stresses and difculties experienced by adults with CF may not be picked up by some of the existing global measures used, for example scales of anxiety and depression symptoms. Pfeffer et al.9 also point out that older studies in this area are becoming less relevant as treatment and prognosis in CF changes. In summary, there may be an increasing need for psychological therapy for adults with CF as patients grow older and disease becomes more severe. This may be necessary to treat psychological difculties, or preferably to prevent such problems developing, through work on employing the most effective coping strategies to adapt to the changing demands of CF. Even those younger patients, with rates of psychological distress similar to that of the general population, will of course require access to psychological therapy at times.
Quality of life in adults with CF

recently been developed.11,12 An exhaustive review of this literature is outside the scope of the current paper. However, one important question investigated in this area is the relationship between severity of illness and quality of life in adults with CF. Pfeffer et al.9 reported variable ndings, but on the whole a poor correlation between somatic health measures and generic quality of life measures. They conclude that the impact of CF upon an individuals life will depend on many factors including their subjective health perception, coping style, and social/ psychological support. They also suggest that adults with CF usually adapt successfully to their disease over time, and that QoL does not suffer until disease becomes so severe that they cannot adapt. They propose that changes in disease severity and rate of change may have a more signicant impact on QoL rather than the severity of disease per se. Another study by Gee et al.13 used the CF specic measure the CFQoL11 and did show a progressive deterioration in many domains of QoL as CF disease progresses. Fears about the future were however present across the whole age range in this study. Work by Staab and colleagues also suggests the importance of subjective health perception and ways of coping, in determining QoL in adults with CF.14 In summary, the importance of quality as well as quantity of life for adults with CF is well recognized and reected in a growing body of literature. New measures have been developed which will help elucidate the nonmedical difculties experienced by adults with CF, as well as being used to evaluate the benets of treatments. Findings from the research in the area of QoL point to a role for psychological work with adults with CF by clinicians, i.e. in helping patients to cope with/adapt most effectively to changes in health and to deal with fears about the future. This may be particularly salient for older adult patients, who often face multiple challenges.
Adherence to treatment in adults with CF

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

A number of studies have investigated factors affecting adherence to treatment in CF. Early work in this important area tended to focus on demographic and clinical variables such as age and gender in order to try and explain differences in adherence (or compliance) to treatments. Recent research has examined the more complex multiple factors that may determine adherence and useful reviews of this literature are published by Abbott and Gee,15 Kettler16 and Pfeffer.9 Factors investigated include: motivation, reinforcement, side effects of treatments, perceptions of severity of illness and personal control, knowledge, coping style, health beliefs, worry, avoidance, social reasons, struggles for power with clinicians and simple lack of time. The notion of educated non-adherence has also been

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explored by different authors, e.g. Koocher17 and Lask.18 Kettler et al. conclude only a small proportion of the variance in adherence has been accounted for in the literature.16 They point out that whilst we know some thingsfor example that there is poorer adherence to the most complex and lengthy treatments, and that people who worry more about disease are more adherent to treatmentthere are very many unanswered questions in this eld as yet. Most authors point to the need for more high quality research, focusing on areas such as patients individual beliefs, perceptions and coping strategies, and utilizing recent theoretical models of health behaviour. In summary, although adherence to treatment in CF is clearly multifactorial, psychological variables seem to be emerging as of paramount signicance. This has important implications for the role of a CP working with adults with CF, who may be able to help patients (and health professionals) to address unhelpful beliefs and behaviours, in order to tackle the common difculties in this area.
The effectiveness of psychological interventions in adults with CF

The research evaluating psychological interventions in adults with CF is very limited. Two earlier studies suggest some benets of stress management type interventions with such patients.19,20 More recently, Hains et al.21 carried out an investigation of the effectiveness of a cognitive behavioural intervention (cognitive restructuring and problem solving) for young adults with CF. This followed a previous study of adolescents with CF where benecial effects of a similar intervention were shown.22 More mixed ndings were reported for the effectiveness of the intervention in adults. However, this study described only four patients, and of these only one had clinical levels of the target problems, such as anxiety and anger. The authors describe some of the difculties in measuring the outcome of a therapeutic intervention in CF. For example, the concerns reported by patients are often quite person specic, and existing global measures may not be sensitive enough to pick up such problems or reect change. These authors concluded that while cognitive behavioural techniques may be applied in CF, further research in this area is needed. Glasscoe and Quittner23 also attempted to evaluate the effectiveness of psychological interventions in CF in a recent Cochrane review. They were able to identify only eight eligible studies and almost all of these related to children with CF not adults. Whilst there was some evidence for the usefulness of behavioural approaches in improving emotional outcomes for children and adolescents, these authors had to conclude again that further research was needed, specically multi-centre approaches to enhance the very limited research available currently. More

work is also needed to evaluate the effectiveness of interventions to improve adherence to treatment in CF. Few conclusions can be drawn about this from the literature as yet. Some authors do however suggest some useful general ways in which problems with adherence might be tackled.24 In summary there is little evidence available to guide the choice of psychological interventions for adults with CF within the eld of CF itself. There is, however, a reasonable evidence base for at least one type of intervention, cognitive behaviour therapy (CBT), in many areas of psychological health. Recent clinical practice guidelines from the UK Department of Health25 cite evidence of the effectiveness of CBT for several problems including: depression, panic, anxiety, post-traumatic stress symptoms, obsessional problems, chronic fatigue, chronic pain and some eating disorders. They also report effectiveness of other forms of psychological therapy (e.g. counselling, interpersonal therapy, psychodynamic therapy) for some forms of depression. In general, the guidelines point to the need for skilled and experienced therapists, and an adequate number of therapeutic sessions, particularly where problems are complex. One approach that has also been shown to be useful where behaviour change is required is the cognitive behavioural technique of motivational interviewing (MI). This has been found to be effective mainly in the area of addictions, but is also now being used in chronic illness, and has been described in detail by Bundy.26 This technique is gaining popularity in the eld of CF and may have much to offer adults who are seeking to change their behaviournot only in terms of adherence to prescribed treatment regimens, but also perhaps other aspects of behaviour such as optimal eating patterns in CF. In general, while those adults with CF with psychological difculties may have some problems specic to CF, there seems no reason why they should not benet from those interventions that have already been shown to be useful for those with psychological distress. One CP working in the eld of chronic ill health, has stated that CBT can be applied to the assessment and treatment of almost every chronic medical problem and explains why CBT may be particularly suited to such patients.4 There will, of course, be many therapists throughout the world working with CF from different theoretical and clinical therapeutic backgrounds. For example, Miller27 has outlined the potential role of psychodynamic psychotherapy for patients with CF. Many other professionals as well as CPs, including those from the elds of social work, palliative care, nursing, psychiatry, and family therapy, will also be offering great support to adults with CF in centres around the world. This work is not reviewed here. As the current paper addresses the contribution of clinical psychology to the problems of adults with CF, and as HO specializes

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largely in cognitive behavioural therapy, there has necessarily been a focus on this approach. Some of the major psychological issues for adults with CF have been outlined above. There are many other important matters with strong psychosocial elements for this patient group. These include: the impact of late diagnosis; transition between services; issues of fertility and reproduction; the role of families of adult patients; issues of transplantation; and terminal care. Much of the valuable work on psychological issues for children with CF is also relevant to those working with adults. Additionally, there are important psychological considerations for health professionals working within the eld of CF. Discussion of research and ndings in all these areas is outside the scope of this paper, but is described in other sources, e.g. Bluebond-Langner et al.28 There is, however, clearly a role for psychosocial input in very many areas for adults with CF, and a need for psychosocially trained professionals to translate research ndings into meaningful clinical interventions for this group of patients. The rest of this paper will go on to describe in detail the work of one clinical psychologist working with adults with CF, in the large specialist centre in Manchester, UK.
THE CLINICAL PSYCHOLOGY SERVICE AT MACFC

CF and other childhood events

F F

Teasing in childhood Felt different from others

Low self esteem Tendency to need to achieve high standards to feel OK Worsening health

Episode of depression when difficulties at work

CF F

Symptoms of depression ^ reduced motivation ^ negative thoughts re self/future ^ reduced activities/interests

DD

less exercise, less treatment fewer distractions/rewarding times

Figure 1 An example of formulation of problems with depression in person with cystic brosis (CF)

process and practicalities of seeing the CP at MACFC are as follows: . Referral: Any patient can self refer to the CP at any time. A leaet is available in clinic and on the ward to describe the role of the CP and what kind of things he/ she may be able to help with. Any member of the CF team may also refer to the CP. Often there is some informal discussion before a referral to see if this is appropriate. As the social workers at MACFC do much supportive work with patients in the unit, and usually know them well, they often carry out informal screening to determine whether referral to the CP might be helpful. Further screening for suitability of psychological intervention is then carried out by the CP at initial assessment, so very few initial referral or exclusion criteria are required. Further referrals are now also picked up through annual psychological assessments . Assessment: An initial assessment is carried out by the CP very soon after referral. There is no waiting list. The assessment session aims to be very informal and nonthreatening, as patients occasionally, understandably, have some reservations about seeing the CP! The aims of assessment are to reach a formulation of any difculties the person with CF may have and to discuss how the CP may be able to help if this is wanted. A formulation of difculties provides a way of understanding the various psychological factors contributing to a persons difculties at the time, usually represented diagrammatically and shared with the patient. This

The CP was employed by the clinical director for MACFC in 1997. The major aims of this development were to provide a specialist psychological assessment and therapy service to patients and advice to the multidisciplinary team (MDT) on psychological issues. Previously, individuals requiring psychological help had to be referred to their local clinical psychology service. However, this was unsatisfactory for two reasons. First, there were often very long waiting times for appointments, sometimes over 12 months. Secondly, it was impossible to get the required liaison and joint working between the psychological therapist and the other health professionals involved, which is so important when carrying out psychological work with patients with medical conditions. Funding for an in house CP was therefore obtained. The CP is based in the CF unit along with the rest of the large MDT. The work of the specialist 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 multidisciplinary team Other roles

THERAPY SERVICE TO REFERRED PATIENTS

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

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often helps patients understand how problems have developed and how they are being maintained. An example of a somewhat simplied formulation for a CF patient who is depressed is shown in Figure 1 Therapy/intervention: Once it is agreed by the CP and the patient that psychological intervention is needed and wanted, further sessions are arranged. This may range from only one or two sessions for a relatively straightforward problem of sleep disturbance, to a more lengthy course of therapy, e.g. 20 sessions for problems such as long-standing depression or very poor self esteem. Occasionally it is decided that intervention by the CP is not required and in a few instances a referral has been made to other services such as local psychotherapy services or psychiatry. Most of the interventions offered by the CP at MACFC are based in CBT. This is a structured therapy which focuses on helping people make changes in unhelpful behaviours, thoughts and underlying beliefs. Details and examples of interventions are described later Evaluation: Is routinely carried out at an individual level. This may include the use of standardized questionnaires, such as measures for anxiety and depression, if these are appropriate. Sometimes such measures are not sensitive enough to pick up specic target problems, e.g. difculty in coping with intrusive fears about the future with CF/tensions with partner about health issues/difculties with feelings about CF or treatment, etc. This is one reason why group data regarding outcome of therapy for these particular patients are not available. The individuals subjective view of the usefulness of therapy is always discussed. If a patient does not report benets, sessions are ended, with the understanding that re-referral to the CP can be made at any time.

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

Males referred=37%, females=63%

Mean

SD

Range

Age FEV 1 % predicted BMI

27.7 56.8 20.65

7.8 23.9 2.94

1750 14.9120.8 14.937

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

Psychological presenting problems of adults at MACFC

The main presenting problems for all assessments carried out by the CP over the sample 5 year period are shown in Table 2. Interpretation of the frequency of presentation of each problem must be made with some caution categorization of patients main problem was often necessarily somewhat subjective, as many patients had multiple presenting difculties at the same time. However, Table 2 does give a avour of the range of difculties seen by the CP at MACFC, and how often these difculties are seen. Since this audit was conducted the service to patients being referred for lung transplantation has been developed further, and all such patients are now also routinely offered psychosocial input. This is provided by either the CP or by one of the unit social workers.
Case illustrations

Details of patients and types of problems seen by the CP at MACFC

The case examples described in case histories below give a avour of the complex nature of problems presenting to the CP at MACFC, and the approaches used in order to help with these difculties. Some further examples of psychological problems, and the interventions carried out are also shown in Table 3. Sometimes psychological intervention has a very practical avour, with cognitive and behavioural change as the focus. At other times patients needs are more for space and time to explore their difculties with someone outside their immediate circle, to resolve difcult issues in their own minds, or at least recognize the validity of feelings and gain some support. Mark is a 23-year-old man with CF. He has good lung function (FEV1=84% predicted), and weight (body mass index=24). He was previously a fairly infrequent attender of the unit, but following problems with gallstones and severe pain (now resolved) he was contacting clinic frequently. He was presenting with many different physical symptoms, was clearly very worried about his health, and needed a lot of reassurance. The CP was asked to see Mark. Psychological assessment revealed a 2 month history of panic attacks, since the period of acute illness, which coincided with some family stress. Mark was experiencing headaches, chest tightness, palpitations and an
Case history:

To date 127 adult patients have been referred to the CP at MACFC. Of these only a handful have declined to be seen. Contact with the rest has ranged from assessment with brief advice only, to longer courses of psychological therapy (range 146 sessions). Some patients have been referred more than once over the 7 years the CP has been in post, and a few on several occasions (maximum ve). The CP recently carried out an audit of 155 episodes of assessment/therapy with 102 referred patients over a sample ve year period.29 The demographic characteristics of these patients are shown in Table 1. These gures indicate that a wide range of patients at MACFC are referred to the CP.

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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 Includes: mood changes signicant enough to interfere with normal functioning and quality of life Includes: anger at CF, reactions to late diagnosis, reactions to deteriorating health, news of need for transplantation Includes: low self esteem, previous abuse, anger management, post-traumatic stress Includes: problems with partners/parents/children Includes: alcohol and illegal drugs Includes: difculty falling asleep/frequent waking Includes: adherence to treatments, problems with hospital admissions/outpatient clinics, inappropriate illness behaviour Includes: coping with ventilation, making decisions about future care, concerns regarding transplantation Includes: disordered eating, body image problems, need for weight gain/loss Includes: problems managing chronic pain Includes: non-suicidal self harming behaviour

32% (47)

Depression or signicant low mood Problems coping with CF/adjusting to changes Other psychological problems/non health life events Relationship problems Substance misuse Sleep problems Problems with health behaviours End of life issues Weight/eating problems Pain Self harm
*Percentages have been rounded up/down CF, cystic brosis

31% (46) 9.5% (14) 9% (13) 4% (6) 3% (4) 3.5% (5) 3% (4) 2% (3) 2% (3) 0.5% (1) 0.5% (1)

upset stomach. His fears at the time of assessment were that either that his CF had worsened, or that he had developed some other condition such as a heart problem, or something wrong with my brain. He had had many medical investigations, all of which were negative, but was concerned that these might have missed something. He had become anxious about leaving the house, was having difculty sleeping and felt very unwell and unhappy in himself. His anxiety score on the Hospital Anxiety and Depression Scale (HADS) was 18/21, indicating a severe level of symptoms. Psychological intervention was started

straightaway. The main focus of this was some detailed education about panic attacks, how and why they occur, the physical symptoms that can be manifested, and how to deal with catastrophic (but inaccurate) thoughts about an impending heart attack or other medical disaster. This took place over 3 sessions. Mark responded very well to this approach, became very well informed about his symptoms and his panic attacks stopped. His HAD anxiety score post intervention was 7 (normal range). The CP did however continue to see Mark for some other psychological issues that emerged during assessment. He did

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

Chronic insomnia Fears about medical procedures, e.g. venepuncture, surgery, use of non-invasive ventilation Low self esteem

Relaxation training, education in better sleeping habits, work on dealing with worrying 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) Exploration of contributing factors including early life. Cognitive therapy techniques to challenge unhelpful maintaining thoughts, e.g. Im useless at everything and attitudes, e.g. I must do everything to please others or I wont be liked CBT for any post-traumatic stress symptoms. Identication of unhelpful coping strategies, e.g. keeping blood sugars high/excessive avoidance of activity. Identication of more helpful coping strategies to manage understandable anxieties and regain sense of control

Anxiety following medical events, e.g. severe hypoglycaemia, pneumothorax, haemoptysis

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CBT, cognitive behaviour therapy

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later have some further anxiety symptoms following an episode of haemoptysis, which was understandably frightening. An additional session on anxiety management was carried out with the CP, in conjunction with input from the physiotherapy team to correct problems with hyperventilation. Marks anxiety symptoms ceased again, and he was discharged home. There continue to be some underlying factors that probably make Mark vulnerable to anxiety at certain times, and he continues to discuss these with the CP. However, both Mark and the CP feel that the relatively short input for his panic disorder prevented an escalation of medical anxiety, reassurance seeking, frequent attendance and psychological distress. Mark was happy for information about these difculties to be shared with the rest of the MDT, which allowed planning for medical and psychological care to be conducted in parallel. Alison is a 27-year-old woman with CF (diagnosed as a baby). She has a long history of problems with depression and has taken anti-depressant medication on several occasions apparently without any benet. She has poor lung function and low weight. She was referred to the CP for help with depression, as the team had noted her low mood, with frequent tearfulness, and were also concerned that she may not be carrying out treatment at home, as she deteriorated so quickly between admissions. Assessment by the CP revealed a severe level of depressive symptoms, with some suicidal thoughts. Alison felt low most of the time, and many factors contributed to this including family, work, social and health issues. She was single and had limited social support. She tended to sleep much of the time to try to escape from her problems. She did very little treatment at home as she felt so tired and unmotivated. She felt bad about this as she knew her health was declining, and tended to avoid coming to the clinic as she felt she was wasting peoples time. Alison was clearly in a vicious circle of depressed mood, lack of energy, poor adherence to very necessary treatment and subsequent feelings of guilt and failure, which then exacerbated her low mood and poor health. Psychological intervention took place over many months. Initial goals were to gradually increase activity and self care levels, with very small planned goals over several months. This did enable Alison to look after herself a little better, and she improved sufciently to be able to do some further work looking at her feelings of failure, fears for the future and guilt. Cognitive therapy helped her challenge some of her negative thoughts, and to learn not to be so hard on herself. Alisons mood did improve further over time. However, many very real problems persisted, not least her declining health. This leaves Alison with a vulnerability to becoming low quite often, and with a need for continued support. Sessions are therefore available to Alison whenever she feels herself becoming more low, to
Case history 2:

use in the way she feels most helpful. The unit social worker is also able to provide much valued support to both Alison and her family.
ANNUAL PSYCHOLOGICAL ASSESSMENTS WITH PATIENTS AT MACFC

A recent goal of the CP at MACFC has been to carry out annual assessment of patients attending the unit. Approximately 10% of the CPs time at MACFC is now spent in carrying out annual assessments and discussing these with the CF MDT. This unfortunately does not allow for all patients to receive psychological annual review at present, although steps are currently being taken to offer this to more patients in the future.
The annual assessment process at MACFC

This process has been in development for several years at MACFC, and is now a nurse-led service which includes several stages: (a) assessment by all disciplines in the team, carried out in a half-day session along with all the necessary medical investigations; (b) a detailed discussion of each patient by all disciplines, to share information, highlight any current health or psychosocial problems, and establish team priorities for the year, and (c) an extended clinic appointment between the patient and one of the unit doctors, to feedback ndings from the annual assessment, establish joint priorities and agree an action plan for the forthcoming year.
Psychological annual review

Each discipline at MACFC carries out its own assessment or review with the patient. These have been tailored to avoid unnecessary repetition for the patients. Details of the psychological annual review by the CP are shown in Table 4. A wide range of questions are asked, about successes and problems in managing CF, as well as about any emotional problems that might be present. Where signicant psychological difculties/issues are highlighted by the annual review process, or where a patient wants to improve their coping skills further, the CP will then see the patient again if they so wish, to discuss this in more detail. Examples of some psychological issues emerging from annual assessments and the action taken are shown in Table 5. Since the CP has been able to carry out annual assessments more interventions for adherence type problems are now being carried out.
Potential problems and benets of psychological assessments

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

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

Psychological difculties now or over the last year Problems with medical procedures or receiving care Coping style/health beliefs Treatment issues Relationship with the multidisciplinary team Any other issues raised

Impact of physical health on emotional health and quality of life (QoL), any particular current stresses or problems Problems with needles, anxiety about planned procedures, difculties with hospital admission or outpatient appointments, anxieties about tests or results How cope with problems/cystic brosis (CF) generallyapproach versus avoid, active versus passive, attitude towards CF and treatment Any problems with treatment regimes, beliefs about specic treatments, e.g. benets, disadvantages, etc. Any difculties experienced, amount of information, control and involvement preferred For example, family, fertility, transition, diagnosis, transplantation, QoL, bereavement, etc.

is the anxiety that new problems might be found or deterioration highlighted. The CP is aware that the psychological review must not be intrusive to patients. These assessments are tailored closely to the wishes of each individual patient, to try to ensure that unwanted topics are not pursued, or that any avoidant coping mechanisms (that are helpful or adaptive) are not threatened. This makes the psychological annual assessment a complex process, requiring experience and sensitivity. Benets of an annual psychological assessment process are that difculties may be picked up that are not always seen as reasons for referral to the CP, especially by patients. These include: difculties adhering to treatment, difculties

with motivation, difculties coping with hospital admissions or outpatient appointments. Where problems are highlighted, solutions can be sought. At MACFC this would be done by either the CP or the patients allocated social worker in conjunction with the MDT, depending on the nature of the difculties. Another advantage of CP annual assessment is that it allows the patient to meet the CP, to normalize this process in the unit, to dispel some myths and fears about seeing the CP (hopefully), and to make it easier to access the CP whenever necessary. It also gives patients the opportunity to report that they are coping very effectively and to receive reinforcement of their own strategies and positive feedback in these circumstances.

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

Motivational interviewing approach identied (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, identication 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 Detailed and lengthy discussion with patient about attitudes to health and treatment revealed specic 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. Specic, 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 has managed to maintain recent weight and is pleased with this, though nds it hard to meet goals at times. Recently a discrepancy between medical goal of increased weight and patients goal of maintaining weight has been identied. Now being explored by the team, CP and patient together, to agree a more shared goal Patient was able to change behaviour in several ways, and now takes almost all medication at home (previously took rarely). FEV 1 has been maintained out of hospital. Patient pleased with own success, and feels better about self, though still nds taking treatment hard. Team has more understanding of the reasons behind adherence problems and sees objective benets of change

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

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WORK WITH THE CF TEAM

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

team (MDT) at Manchester Adult CF Centre

A substantial proportion of the CPs time (approximately 40%) is spent in working with the rest of the CF team, in order to meet the psychological needs of the patients at MACFC. They also help the team carry out their demanding and sometimes stressful roles, in caring for adults with CF. Over recent years, the work with the staff team has developed, usually in response to requests from staff for particular kinds of input. Work with the CF team by 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 the input with the CF team, aimed at improving health and QoL for these patients, the CP at MACFC has some further roles which include: . Service development: At present projects are underway in MACFC to develop the service further in many areas including the following: fertility and reproduction, transition between paediatric and adult services, liaison with transplant services, palliative care, diabetes, and changes to the policy on segregation of patients. The CP has a role in each of these initiatives, to give a psychological viewpoint where possible Staff stresses survey: The CP at MACFC carries out an annual survey of staff to determine the nature of any signicant work-related stresses over the previous year. Results of the survey are fed back to staff each year, and a planning meeting held to address any identied problems. Details of this process have been outlined elsewhere31 Collecting patients views about MACFC: In conjunction with one of the unit social workers, the CP undertakes an annual survey of patient satisfaction with MACFC. This is to try to make sure that care is responsive to the needs of the patients attending the unit, and to help patients feel involved and consulted with respect to their care.

. 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 patientteam 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 patients 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 difcult behaviours . The CP contributes to staff support The CP is also available to the whole team to discuss any difculties that arise in the care of patients or work as a team

clinicians working with adults with CF (for example to elucidate the psychological difculties experienced and the effectiveness of interventions offered) has lagged behind research in other areas. This must be remedied in the near future, perhaps through the use of multi-centre initiatives by psychosocial professionals in CF units, as suggested in the recent literature.
CONCLUSIONS

A specialist clinical psychologist can manage the problems of adults with CF in the following ways: . By providing evidence based psychological therapy for a wide range of difculties. This therapy is delivered with specialist knowledge of CF, and as an integral part of the whole multidisciplinary team By helping patients nd the best individualized way of coping with CF at any particular time, through discussion of their attitudes, beliefs and perceptions, to help adapt to changes, prevent psychological problems developing and improve overall quality of life By helping patients make desired changes to specic behaviours, such as improved adherence to treatment, or reduction of unhelpful habits, in order to maximize health and/or psychological functioning By helping to ensure that wherever possible patients are active partners in care, making their own informed decisions, and that patients have the right amount of information, control and involvement for their particular needs

The requirements of the MACFC for clinical psychology time have recently been reviewed.32 The current post of 0.6 wte (whole-time equivalents) does allow for all referred patients to be seen, without a waiting list developing. However, this time does not allow for all tasks suggested by the CF trust to be carried out. The staff team at MACFC increasingly request more frequent access to the CP to discuss the care of patients. The CF trust recommends a total of 2 wte CP for a unit the size of MACFC, and while this may be difcult to achieve in practice, it may indeed reect the time needed for all the potential roles of a CP to be fullled. This is perhaps one reason why research by

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By helping patients with the most severe disease cope with difcult times, by providing psychological support, and help with decision making and problem solving By providing screening for psychological difculties, and offering early intervention for any developing problems, through annual psychological review By providing the rest of the CF MDT with information and advice on a wide range of psychological matters, to ensure that patients psychological needs are known and taken into account, and to facilitate co-ordinated holistic care of these individuals By supporting the team in maintaining optimal working relationships with patients, through the application of psychological principles By monitoring any staff stresses and helping the team manage these By contributing to the ongoing development of CF services, to ensure that psychological issues are considered when planning new initiatives or improving existing care By contributing to research in the eld of CF, with the aim of further understanding the psychological issues for adult patients, identifying the actual clinical implications of these, and evaluating the effectiveness of any interventions delivered in practice.

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