Cystic Fibrosis: the psychological picture

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Patrick Warner
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1 Cystic Fibrosis: the psychological picture Caroline Cochrane Lead Clinical Psychologist Scottish Adult Cystic Fibrosis Service Western General Hospital Edinburgh

2 Cystic Fibrosis is a multi-system disease requiring a holistic approach to care. Care should aim to prevent, for as long as possible, chronic infection, and later stabilise the pulmonary infections to minimise deterioration in respiratory function and maintain a good nutritional state. The aim is to maintain the person s independence, improve their quality of life and extend their life expectancy. (CF Trust, Standards of Care, 2001)

4 Do people with CF have psychological difficulties because they have CF?

5 Anderson et al (2001) Study to assess psychological functioning of adults with CF Reviewing other studies mixed results Some studies - relatively normal adjustment in older adolescent and adult CF patients, other studies suggest elevated level of psychosocial impairment including anxiety, depression and eating disorders. Several studies - report that emotional disturbance increases significantly in CF patients as they get older this may realistically though be related more to disease severity rather than chronological age.

6 Anderson et al s study 34 adults with CF completed a battery of testing including, MMPI-2, BDI, and State-Trait Anxiety Inventory. These were compared to health status data, including pulmonary function testing, and nutritional status measures. Results: As a group adults with CF did not demonstrate significant levels of depression, anxiety or other psychopathology. Better lung functioning predicted less anxiety Having a higher level of psychosocial support was a strong predictor of better psychological functioning.

7 Pfeffer et al,( 2003) There is a large body of evidence pointing to the fact that psychological and psychosocial functioning of people with CF is similar to that of well people until the disease becomes more severe. ( i.e. An association with disease severity rather than chronological age) There has been conflicting evidence of the association between degree of respiratory impairment and psychological functioning. Coping styles seem to have a large effect upon the quality of life with CF patients. Older studies are becoming increasingly inapplicable as treatment and prognosis changes.

8 There is also evidence that people with CF could suffer an increased likelihood of difficulties such as: low self esteem, anxiety and depression, relationship difficulties stress associated with end of life issues and transplantation. Non compliance with treatment Sexuality, platonic relationships and independence.

9 Do people with CF have psychological problems? Generally speaking CF patients follow a normal psychological profile, until their disease becomes more severe. (Pfeffer et al, 2003) Thus up until this time there is just as much likelihood of them having psychological difficulties as everyone else. There may be certain challenges associated with having CF that people with CF may face. Disease severity is associated with decreasing quality of life and a potential increase in incidence of anxiety and depression.

10 What is the role of the CF Clinical Psychologist?

12 Good psychological support....enabling the individual to express thoughts, feelings and concerns relating to illness, assessing individual needs and resources for coping, and ensuring that appropriate psychological support is available. Payne & Haynes, 2002

13 Help patients with their struggles while recognising their capabilities. (Neilson-Clayton and Brownlee,2002)

14 Manchester CF centre problems presenting to the CF Clinical Psychologist Anxiety, depression or significant low mood Problems coping with CF/adjusting to changes Other psychological problems/non health life events could include PTSD, abuse, anger management Relationship problems Substance misuse Sleep difficulties Problems with health behaviours eg treatment adherence End of life issues Weight/eating problems Pain Self Harm (Oxley, 2005)

15 CF Specific Issues e.g. treatments, impact of CF Anxiety General life issues e.g. relationships, life stage, children, work, family Transitions: e.g.from paediatric to adult services, changes in illness status, transplant, end of life Need for independence and support

16 Transitions

17 Transitions Challenging Existing coping mechanisms may not work as well Concerns about the future Process of adjustment

18 Challenge or Damage?

19 Stressful issues and persistent challenges influence the whole family, and in turn, key family processes mediate the recovery and resilience of vulnerable members as well as the family unit. ( Walsh, 2002) * coping/ adaptation/ growth

20 Types of transitions Illness occurs in a context Individual Life Cycle Family Life Cycle Illness Life Cycle ( Rolland, 1994)

21 Phases of Illness Acute Chronic Terminal Different illness tasks and adjustments needed for the patient and his/her family at each stage.

22 Stages in the CF journey Living fairly normal life, some treatment but fairly low intensity. Need for more IV s, hospital stays, treatment. Disease impacting on person s Qol Coming around to end stage Transplant Post transplant End of life issues

23 Moos & Holohan (2007) Adaptive tasks typically encountered with chronic illness. 1. Managing symptoms 2. Managing treatment 3. Forming relationships with health care providers 4. Managing emotions 5. Maintaining a positive self image 6. Relating to family members and friends 7. Preparing for an uncertain future.

24 Transition paediatric to adult services Process over a year Clinic 1 RHSC January Clinic 2 RHSC with WGH pairing up- March Clinic 3 RHSC with WGH pairing up- June Clinic 4 WGH Sept Happens at a busy time in people s lives

25 Transition end stage and transplant Support needed transplant assessment waiting on list / false calls post transplant adjustment episodes of rejection post transplant complications eg renal end of life

26 Useful approaches... CBT Anxiety/panic management Sleep difficulties Relaxation/Distraction Low mood Family/systems approach Joint sessions FSIM, FRF. Mindfulness

27 Questions?

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