Medical Treatment Antibiotics Anti-inflammatory Chest Physio Exercise Nutrition Spotting decline Attention to other complications Timely transplant referral End-of-life issues
Treatment Summary: Typical moderately severe patient will be on: Creon, ADEKS Supplemental feeding Nebulised colistin Nebulised DNAse Azithromycin +/- Insulin On average 2-3 hrs therapy per day
What are the unique challenges facing CF Patients?
What are the challenges in caring for patients? Adolescence Concordance Complex complications Psychosocial impact Denial! Transplant referral End-of-life issues Skilled teamworking
Case 1: 34 yr female, primary teacher Worked part-time Very dedicated to job, poor concordance Poor health, low BMI, CFRD, many Ivs Perceived poor support in workplace Difficult career to be absent from… Retired on health grounds Now much health better, but not fulfilled…..
Case 2: 29 yr female, great FEV1, great BMI. Never worked Lives with parents “My CF is my job. I spend all my energy on that, on keeping well. And look at me, I’m fantastic!! I would just wear myself out working, and why should I when I have so much less life to live than other people?”
Case 3: 32 yr female, SALT Worked full-time until 1 yr pre-transplant Part-time until 3mnths pre-transplant Strong work ethic Huge support at work Many miles covered each day….. Planning to return as soon as OK!
Case 4: 26yr male, chef. Shift working Long hours Coughing and cooking??? Incompatible with multiple admissions Succession of lost positions Low morale and self-esteem
Rate of Employment 70% France unit- Laborde-Casterot et al, 2012 55% California unit- Gillen et al, 1995 48% North Carolina unit -Burker et al, 2004 72% Australia unit- Hogg et al, 2007 56% Canada unit- Frangolias et al, 2003
Rate of Employment: Approx. 50% in each of 6 studies currently in work- Saldana et al, 2012 51% Full time, 34% part time- Frangolias et al, 2003 7/10 post-transplant re-employed (Laborde-casterot et al, 2012)
Types of employment Very few adolescents have career guidance (Demars et al 2011) No difficulty setting vocational goals, regardless of disease severity (Isralsky et al, 1979) Higher educational attainment (Saldana et al,2012)
Types of employment: Majority in professional employment (Gillen et al, Goldberg et al, Saldana et al) 10-16% Health profession (Saldana et al,2012)
Working with CF: “For individuals with disabilities and chronic health care conditions, work goes beyond the financial benefit, and is thus therapeutic by enhancing identity, increasing social contact, and decreasing isolation.” Johnson et al, 2004
Working with CF: ? Deterioration in health status- Havermans et al, 2009 Associated with better HrQOL scores and lower depression scores-Hogg et al, Burker et al 33% disclosed CF at interview 62% disclosed to colleagues
Working with CF: >50% perceived limitations in their job due to CF 67% felt CF prevented them having a career 37% felt CF caused lower income 70% declared one sick leave in 12 mnths study 54% of cases led to service disruption Laborde-Casterot et al, 2012
Employment Choices: Discouraged: Health care work Working with children Exposure to dusts/fumes Outdoor work Working with animals Hairdressing Laborde-Casterot et al, 2012
Employment choices: Nottingham Experience: Blue-collar workers find sick leave etc much more difficult to negotiate than white-collar Working for large firms advantageous Health care workers well supported but problems with MRSA etc Patients often delay/avoid treatment due to work pressures
Employment choices: Nottingham Experience: Shift working bad news Part-time working a good option Little support for adapting to disability and loss of vocational identity. Many patients with severe CF successfully work. Many patients have ‘high flying’ careers
Predicting work disability: FEV 1 : Moderate/severe disease not a predictor of employment (Frangolias et al, 2003, Hogg et al, 2007) No significant difference FEV 1 between working/not working groups (Burker et al, 2004) In particular low FEV 1 poor discrimator (Frangolias et al, 2003) FEV 1 not good predictor of work status
Predicting work disability: Laborde-Casterot et al, 2012: FEV 1 and educational level best predictors of work status. Hogg et al, 2007: Age, hospitalisations, disease mastery Gillen et al, 1995: age, female, being single Burker et al, 2004: Elevated depression scores, lower educational level
To work or not to work……. Financial benefits versus benefits system ? Worse health Juggling treatment Improved quality of life Self-esteem and identity Career adjustment to disability and ill health
Vocational rehabilitation Goldberg et al, 1979: Less realistic in considering limitations and planning careers; Higher commitment, work values, and occupational info.; Strong work ethic. Laborde-Casterot 2012: Workplace adjustments in 22%, usually decrease in hrs
What is needed to improve the work experience? Better transition Career advice in adolescence Role models Realistic aspirations Vocational rehabilitation
What is needed to improve work experience? Vocational assessments Transferable skills analysis Retraining More public understanding of CF. A more sensible and flexible benefits system…
Summary: Survival is now 50 yrs plus Most patients with CF work Work poses considerable challenges Great scope for input from occupational health physicians…!!!
Key References: Burker et al, Paed Pulm 38 (2004) Saldana et al, Work 42 (2012) Laborde-Casterot et al, JCF 11 (2012)