Thursday, September 15, 2016

PWS Clinics - summary from Toronto Conference

(We asked for comments from some of our professionals attending the IPWSO Conference in Toronto recently.  This summary comes from Georgina Loughnan, IPWSO Board member and Chair of our Famcare Committee.  Two reports of multidisciplinary clinics for people with PWS who some interesting statistics including the mean death rate, sexual activity and relationships, dietary management and asks the question "Why are there not more clinics around the world?"

PWS Clinics –IPWSO Conference Toronto 2016 Scientific Session
Dr Laura de Graaff (internist-endocrinologist) – Rotterdam

Multidisciplinary outpatients clinic for adults with Prader-Willi syndrome


Healthcare Improvement Programme was supported by Pfizer lead to the establishment of this clinic at the new Erasmus Medical Centre which provides research, education, pediatric and adult care.
The multidisciplinary team includes: an endocrinologist, dietitian for mentally disabled, a behavioural specialist, a physician for Mentally Disabled and an Outpatient Assistant. Other specialists accessible for referral include cardiologists, neurologists,  ophthalmologist, psychiatrists, orthopaedic surgeons, gynaecologists and urologists.

Established to provide: expert care and support of patients with PWS; support for caregivers; research; education of other medicos and nurses.

Each client has a personal health care plan and SOS Alert Cards created for them.
61 clients seen within the first year of the clinic – 66% with Deletions; 31% with UPD; 3% Imprinting Centre Defects

Online questionnaire used for patient admission – 25 questions
Client status
•    Residential:  65% in non-specialised residential homes; 5% in PWS specialised homes; 20% with family
•    Medications: Vitamin D 59%; antipsychotics 17%;  calcium 20%; statins 9%; diabetic – Insulin 6%/Tablets 6%; GH 30%; androgens male 68%:female 50%; thyroid 15%; hydrocortisone stress dose 29%.
•    Exercise: 30-60 minutes per day 44%
•    Diet: 25% not on a diet; 30% use Happy Weight Dot diet
•    Untreated hypogonadism: males 30%; females 50%
•    Scoliosis in 73% of patients
•    20% in a relationship (33% sexually active)

Patients and parents very pleased to have OPC with experts in one team & email and phone accessibility.

A Prader-Willi Syndrome Clinic – is it worth the effort?

Georgina Loughnan (physiotherapist) PWS Clinic Sydney, Australia
Review of a public hospital adolescent and adult PWS clinic that has been in running  for 25 years
Clinic started with 1 client at 1 half session per month, in an existing multi-disciplinary  Endocrine Staff currently include- endocrinologists, nurse, 2 dietitians, physiotherapist

87 genetically diagnosed clients have been seen: 46 Male; 41 Female – 58.6% with Deletions
Current mean age: 31.7 years. Six clients are 50 years or older

Mean age of deaths 1991-2001 – 31.1 years; mean age of deaths 2002-2016:  37.8 years

44% of clients have a BMI of ¬¬> 40 kg/m2

In 2015 the clinic evaluated the service provided by surveying the parents and caregivers of attending clients. The highest rated “Perceived Benefits of the Clinic” were Ongoing Support – 89%; Lifestyle Advice 80%; Group Programme 71%.

The “Perceived Effective Management Strategies for Weight Loss” of most importance were Restrictive Practices 89%; Consistent Management 89%; Medical Management 80%

Managing a Clinic for people with PWS has highlighted  several key points:
1) the need for improved of PWS awareness amongst medical and paramedical staff/ guardianship boards/ all service providers/educators/community workers and government funding bodies.

 2) the importance of home based exercise for effective weight loss

 3) the important role that appropriate PWS residential care plays in the health and longevity of clients with PWS

Unexpected benefits from the clinic have been identified as
1) being a powerful resource for others who require information and support for the care of someone with PWS - from families to funding bodies and other professionals. The ability to implement hospital inpatient policy 
2) the comfort provided for people with PWS
3) the strength of medical advocacy 4) the reduction of parent and caregiver burden, by the clinic being the “authority figure” and “scapegoat” for clients.

Negatives of a public hospital clinic: - many people who do not understand PWS / shared departmental waiting rooms / the presence of hospital food –  cafeterias, inpatient food trolleys / hospital codes of behaviour .

What helps to run a PWS clinic – support staff/ flexible  job description / stepping outside the square / regular contact with parents and caregivers / other PWS resources / passion for working with people with PWS!

Worldwide issue, including in Australia  - the need for more public hospital PWS clinics.


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