Clinical genetics clinical outcomes
This page gives an overview of the Clinical Genetics Department at Great Ormond Street Hospital (GOSH). It provides information on how the department measures the effect of its clinics for patients and the results of the most recent survey.
Overview of the Clinical Genetics Department
The Clinical Genetics Department at Great Ormond Street Hospital (GOSH) offers clinical assessments and other investigations, including genetic tests, for children and adults with complex medical problems, to aid diagnosis of genetic conditions. It provides genetic counselling for families about the likely recurrence of congenital abnormalities and medical problems.
The Clinical Genetics Department also assesses individuals within families who are concerned about increased risk of cancer where there is a familial aggregation. In families considered to be at increased risk, gene testing may be offered and arranged, as well as advice about methods to reduce risk or screen for tumours.
The department at GOSH is part of the North East Thames Regional Genetics Service, which also includes the Regional Molecular Genetics Laboratory and the North East London Regional Cytogenetics Laboratory. The three units work closely together to provide an integrated service.
The following map shows the area covered by the service and the clinics that are held:
The map shows the area covered by the clinical genetics clinics in north east thames
The Clinical Genetics Department offers clinical assessment and investigations including genetic tests across a broad number of conditions and supporting several clinical specialities including, for example:
- cystic fibrosis
- Duchenne muscular dystrophy
- Huntington disease
- myotonic dystrophy
- marfan syndrome
- fetal, congenital and chromosome abnormalities
- childhood deafness
- developmental delay/learning disability
The Clinical Genetics Department also provides advice and counselling for personal and/or family history of cancer and tumours.
The department sees both adult patients and parents on behalf of their children, for example in the last year 53 per cent of the patients seen were over 18 and 47 per cent of patient seen were aged 18 and under.
How do we measure the results of the Clinical Genetics Department?
The Clinical Genetics Department provide information and advice to a number of patients that access the service regarding genetic conditions. The objective of the team is to ensure that when patients access the service the information and advice that is provided is communicated effectively, is helpful and can be understood by patients
To measure how the Clinical Genetics Department meets the needs of its patients, and where applicable parents, a patient reported experience and outcome survey has been issued over the last couple of years.
This survey includes questions of overall satisfaction with the service and the likelihood of recommendation of the service to others. It also asks specific questions regarding the information and communication that was provided and how helpful this was in understanding the discussions and outcomes in clinic.
The results of this survey gives an indication of how satisfied patients and parents are with the service. They also illustrate how well information is communicated to support patients with decision making and onward management of possible genetic disorders.
The survey asked 23 questions and the following areas were identified to give a summary of the results:
- Overall satisfaction with the service – respondents were asked 'overall how satisfied or dissatisfied were you with your last visit to the Genetic Service' and to rate from the following options: Very satisfied; Fairly satisfied; Neither satisfied nor dissatisfied; Fairly dissatisfied; Very dissatisfied or Don’t know.
- Likelihood of recommendation of the service – respondents were asked 'How likely or unlikely would you be to recommend the Genetic service to a friend or relative if they or their child needed treatment' and to rate from the following options: Very likely; Fairly likely; Neither likely nor unlikely; Fairly unlikely; Very unlikely or Don’t know.
- The best responses to questions that assess how well the service provides information and communicates this – measured by the top percentage result for the best answer option.
- The worst responses to questions that assess how well the service provides information and communicates this – measured by the bottom percentage result for the best answer option.
June 2011 Patient reported experience and outcome survey results
All patients that attended a clinical genetics clinic in June 2011 were sent a survey to complete.
The following highlights the results for:
The results show that 71 per cent of patients or their parent/carers that attended the service were very satisfied and a further 22 per cent were fairly satisfied with their last visit to the Clinical Genetics Departments.
Responses to 'Overall how satisfied or dissatisfied were you with your last visit to the Clinical Genetics Service?'
The results show that 76 per cent of patients or their parent/carers that attended the service would be very likely to recommend the genetic service to a friend or relative and a further 16 per cent were fairly likely to do this.
Overall responses to 'How likely or unlikely would you be to recommend the Clinical Genetic Service to a friend or relative if they or their child needed treatment?'
The results show that 85 per cent of patients or their parent/carers felt that staff were very good at giving them the opportunity to ask questions.
Overall responses to "Thinking about when you last attended the Clinical Genetics clinic how good were staff at giving you or your child the opportunity to ask questions?"
The results also show that 81 per cent of patients or their parent/carers felt that staff were good at answering questions asked.
Overall responses to 'Thinking about when you last attended the Clinical Genetics Clinic how good were staff at answering your or your child's questions?'
Only 64 per cent of patients or their parents/carers strongly agreed that they had enough information about what would happen next
Overall responses to 'Thinking about when you last attended the Clinical Genetics Clinic do you agree or disagree that staff were good at offering information for other members of your family?'
In addition only 63 per cent of patients or their parents/carers felt that staff were very good at offering information for other members of their family.
Overall responses to 'Thinking about when you last attended the Clinical Genetics Clinic do you agree or disagree that you had enough information about what would happen next?'
To improve communication in these areas the department has discussed the importance of ensuring patients are always given information of what will happen next and contact details where feasible of someone to contact if patients have further questions or concerns when they get home.
The department is exploring the options of the best way to do this. A survey is planned for 2012 which will identify if improvement has been made in this area.
About the information
All patients that attended a clinical genetics clinic in June 2011 were sent with their clinic letter a copy of a questionnaire and a stamped address envelope. In total 325 questionnaires were sent out and we received 97 responses back representing a 30 per cent response rate.
63 per cent that answered the survey were patients compared to 37 per cent that were either parents or carers/relatives of a child.
This exercise took place between June and September 2011. The results were then reviewed and presented to the Clinical Genetics team in December 2011.
The Clinical Genetics team plan to carry out a similar Survey in 2012 and will update the results in January 2013.