Long-term follow up and transition services after stem cell transplantation

Survey

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* 1. Please state your name, which transplant centre you work at and its EBMT CIC

Name

Transplant Centre

EMBT CIC

E-mail address

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* 2. Which of the following best describes your role?

BMT programme director

Transplant doctor

Transplant specialist nurse

Other (please specify)

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* 3. Which statement best describes your programme?

Fully JACIE accredited for allogeneic transplantation: completed one cycle

Fully JACIE accredited for allogeneic transplantation: completed two cycles

Fully JACIE accredited for allogeneic transplantation: completed three cycles

Not yet accredited but has undergone first time inspection

Working toward JACIE accreditation

No JACIE accreditation

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* 4. From what age are patients treated with allogeneic transplantation in your unit ?

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* 5. For units which include paediatric transplants, up to what age do you treat paediatric patients in your unit?

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* 6. For paediatric centres where patients have to transition to an adult service, please describe the service that the patients transition into (tick all that apply)

A dedicated adult late effects clinic

An adult transplant outpatient clinic

A haematology-oncology outpatient clinic

A general haematology outpatient clinic

Other (please specify)

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* 7. For paediatric centres where patients have to transition to an adult service, is this adult service :

In the same department as the paediatric service

In the same hospital as the paediatric service

In the same group of hospitals as the paediatric service

In the same town/city as the paediatric service but NOT in the same hospital/hospital group

In a different town/city

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* 8. In your programme, please estimate the proportion of allogeneic transplant patients who receive regular follow up in your transplant unit at the following time points

	0%	1-10%	11-50%	51-90%	91-100%
From day 100 to 1 year post-allograft	From day 100 to 1 year post-allograft 0%	From day 100 to 1 year post-allograft 1-10%	From day 100 to 1 year post-allograft 11-50%	From day 100 to 1 year post-allograft 51-90%	From day 100 to 1 year post-allograft 91-100%
From 1 year post-allograft to 5 years post-allograft	From 1 year post-allograft to 5 years post-allograft 0%	From 1 year post-allograft to 5 years post-allograft 1-10%	From 1 year post-allograft to 5 years post-allograft 11-50%	From 1 year post-allograft to 5 years post-allograft 51-90%	From 1 year post-allograft to 5 years post-allograft 91-100%
From 5 years post-allograft to 10 years post-allograft	From 5 years post-allograft to 10 years post-allograft 0%	From 5 years post-allograft to 10 years post-allograft 1-10%	From 5 years post-allograft to 10 years post-allograft 11-50%	From 5 years post-allograft to 10 years post-allograft 51-90%	From 5 years post-allograft to 10 years post-allograft 91-100%
From 10 years post-allograft to 15 years post-allograft	From 10 years post-allograft to 15 years post-allograft 0%	From 10 years post-allograft to 15 years post-allograft 1-10%	From 10 years post-allograft to 15 years post-allograft 11-50%	From 10 years post-allograft to 15 years post-allograft 51-90%	From 10 years post-allograft to 15 years post-allograft 91-100%
More than 15 years post-allograft	More than 15 years post-allograft 0%	More than 15 years post-allograft 1-10%	More than 15 years post-allograft 11-50%	More than 15 years post-allograft 51-90%	More than 15 years post-allograft 91-100%

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* 9. In your programme, which of the following statements best describe the organisation and model of the long term follow up and late effects service? (Please tick all that apply)

A dedicated long-term follow up clinic solely for survivors of transplantation distinct from routine transplant care

A dedicated long-term follow up clinic for all intensively treated haem-oncology patients distinct from routine follow up care

A dedicated long-term follow up clinic specifically for patients with chronic graft-versus-host disease

Long-term survivors are reviewed together with other allograft outpatient activity (for example new patients and follow up of early complications)

Long-term survivors are reviewed together with other haematology-oncology patients

Long-term survivors are reviewed together with other general haematology patients

No formal hospital service for long term survivors; these patients are discharged back to their primary hospital referral base

No formal hospital service for long-term survivors; these patients are discharged back to their community or family doctor such as a General Practitioner

Other (please specify)

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* 10. If you have a document controlled standard operating procedure specifically for long term monitoring and management of late effects is it structured on any of the following?

Not applicable (because no specific standard operating procedure in use)

External guideline - incorporating physical and physiological assessment (National or International guideline)

External guideline - incorporating psychological assessment

Internal structured guideline for physical and physiological assessment (e.g. endocrine or cardiovascular)

Internal structured guideline for psychological assessment

Please state any guideline referenced in your standard operating procedure

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* 11. Which statement best describes the leadership and coordination of your late effects and long-term followup service for allogeneic transplant patients?

Led and co-ordinated by a transplant consultant

Led and co-ordinated by a non-transplant haematology consultant

Led and co-ordinated by a non-haematological medical consultant

Led and co-ordinated by a nurse specialist

Led by no specified individual but conducted as part of good routine practice by medical and nursing specialists routinely seeing patients in clinic

Other (please specify)

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* 12. If your hospital has access to a multi-disciplinary team (MDT) specifically for late effects please consider which of the following apply

Not applicable (because no MDT for late effects)

Yes available for all age groups

Yes but only available for adult patients

Yes but only available for paediatric patients

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* 13. If you have a dedicated multi-discipllinary team, which personnel participate?

Not applicable (no dedicated MDT)

Dedicated senior nursing staff

Consultant haematologist

Consultant paediatrician

Consultant endocrinologist

Psychologist/representative from psychology service

Social worker

Consultant in other speciality (e.g. oncology, reproductive medicine) - please specify below

Other (please specify)

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* 14. Do your long-term survivors routinely have access to specialist care within the same hospital or hospital group as your transplant centre in the following areas? Do the personnel delivering care in these areas have an interest in the late effects of allogeneic transplant? (Please tick all that apply)

	Long term survivors have access	Personnel delivering care have an interest in late effects of allogeneic transplant
Allocated key workers giving a single point of contact for the patient	Allocated key workers giving a single point of contact for the patient Long term survivors have access	Allocated key workers giving a single point of contact for the patient Personnel delivering care have an interest in late effects of allogeneic transplant
Clinical nurse specialist or other senior nursing staff	Clinical nurse specialist or other senior nursing staff Long term survivors have access	Clinical nurse specialist or other senior nursing staff Personnel delivering care have an interest in late effects of allogeneic transplant
Physiotherapy	Physiotherapy Long term survivors have access	Physiotherapy Personnel delivering care have an interest in late effects of allogeneic transplant
Clinical Psychology	Clinical Psychology Long term survivors have access	Clinical Psychology Personnel delivering care have an interest in late effects of allogeneic transplant
Dietician	Dietician Long term survivors have access	Dietician Personnel delivering care have an interest in late effects of allogeneic transplant
Endocrinology	Endocrinology Long term survivors have access	Endocrinology Personnel delivering care have an interest in late effects of allogeneic transplant
Fertility/reproductive medicine/sexual health	Fertility/reproductive medicine/sexual health Long term survivors have access	Fertility/reproductive medicine/sexual health Personnel delivering care have an interest in late effects of allogeneic transplant
Cardiology	Cardiology Long term survivors have access	Cardiology Personnel delivering care have an interest in late effects of allogeneic transplant
Respiratory medicine	Respiratory medicine Long term survivors have access	Respiratory medicine Personnel delivering care have an interest in late effects of allogeneic transplant
Dermatology	Dermatology Long term survivors have access	Dermatology Personnel delivering care have an interest in late effects of allogeneic transplant
Gastroenterology	Gastroenterology Long term survivors have access	Gastroenterology Personnel delivering care have an interest in late effects of allogeneic transplant
Opthalmology	Opthalmology Long term survivors have access	Opthalmology Personnel delivering care have an interest in late effects of allogeneic transplant
Oral medicine and dentistry	Oral medicine and dentistry Long term survivors have access	Oral medicine and dentistry Personnel delivering care have an interest in late effects of allogeneic transplant
Symptomatic and supportive care including pain management	Symptomatic and supportive care including pain management Long term survivors have access	Symptomatic and supportive care including pain management Personnel delivering care have an interest in late effects of allogeneic transplant
Occupational therapy/vocational rehabilitation	Occupational therapy/vocational rehabilitation Long term survivors have access	Occupational therapy/vocational rehabilitation Personnel delivering care have an interest in late effects of allogeneic transplant
Financial support/beneftis advice/social worker	Financial support/beneftis advice/social worker Long term survivors have access	Financial support/beneftis advice/social worker Personnel delivering care have an interest in late effects of allogeneic transplant

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* 15. In your allogeneic transplant programme, when does systematic screening, assessment and management usually commence with respect to the following aspects? Please confirm the areas where screening, assessment and management are readily accessible.

	Never	Reactive	Routine within 2 years	Routinely at 2-5 years	Routinely at 10 years	Routinely beyond 10 years	Easily accessible
Endocrinology	Endocrinology Never	Endocrinology Reactive	Endocrinology Routine within 2 years	Endocrinology Routinely at 2-5 years	Endocrinology Routinely at 10 years	Endocrinology Routinely beyond 10 years	Endocrinology Easily accessible
Iron overload	Iron overload Never	Iron overload Reactive	Iron overload Routine within 2 years	Iron overload Routinely at 2-5 years	Iron overload Routinely at 10 years	Iron overload Routinely beyond 10 years	Iron overload Easily accessible
Cardiovascular risk assessment (e.g. lipids, diabetes, blood pressure, obesity)	Cardiovascular risk assessment (e.g. lipids, diabetes, blood pressure, obesity) Never	Cardiovascular risk assessment (e.g. lipids, diabetes, blood pressure, obesity) Reactive	Cardiovascular risk assessment (e.g. lipids, diabetes, blood pressure, obesity) Routine within 2 years	Cardiovascular risk assessment (e.g. lipids, diabetes, blood pressure, obesity) Routinely at 2-5 years	Cardiovascular risk assessment (e.g. lipids, diabetes, blood pressure, obesity) Routinely at 10 years	Cardiovascular risk assessment (e.g. lipids, diabetes, blood pressure, obesity) Routinely beyond 10 years	Cardiovascular risk assessment (e.g. lipids, diabetes, blood pressure, obesity) Easily accessible
Mammography	Mammography Never	Mammography Reactive	Mammography Routine within 2 years	Mammography Routinely at 2-5 years	Mammography Routinely at 10 years	Mammography Routinely beyond 10 years	Mammography Easily accessible
Cervical smears	Cervical smears Never	Cervical smears Reactive	Cervical smears Routine within 2 years	Cervical smears Routinely at 2-5 years	Cervical smears Routinely at 10 years	Cervical smears Routinely beyond 10 years	Cervical smears Easily accessible
Vaccination	Vaccination Never	Vaccination Reactive	Vaccination Routine within 2 years	Vaccination Routinely at 2-5 years	Vaccination Routinely at 10 years	Vaccination Routinely beyond 10 years	Vaccination Easily accessible

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* 16. In your opinion, what are the major barriers to implementing effective late effects follow up for patients allografted by your service? Rate all on a scale of 1 to 10 where 1=no issue and 10=major issue

	1= no issue	2	3	4	5	6	7	8	9	10 = major issue
Financial limitations related to clinical staffing	Financial limitations related to clinical staffing 1= no issue	Financial limitations related to clinical staffing 2	Financial limitations related to clinical staffing 3	Financial limitations related to clinical staffing 4	Financial limitations related to clinical staffing 5	Financial limitations related to clinical staffing 6	Financial limitations related to clinical staffing 7	Financial limitations related to clinical staffing 8	Financial limitations related to clinical staffing 9	Financial limitations related to clinical staffing 10 = major issue
Financial limitations related to costs of investigations	Financial limitations related to costs of investigations 1= no issue	Financial limitations related to costs of investigations 2	Financial limitations related to costs of investigations 3	Financial limitations related to costs of investigations 4	Financial limitations related to costs of investigations 5	Financial limitations related to costs of investigations 6	Financial limitations related to costs of investigations 7	Financial limitations related to costs of investigations 8	Financial limitations related to costs of investigations 9	Financial limitations related to costs of investigations 10 = major issue
Limitations of evidence-base for screening	Limitations of evidence-base for screening 1= no issue	Limitations of evidence-base for screening 2	Limitations of evidence-base for screening 3	Limitations of evidence-base for screening 4	Limitations of evidence-base for screening 5	Limitations of evidence-base for screening 6	Limitations of evidence-base for screening 7	Limitations of evidence-base for screening 8	Limitations of evidence-base for screening 9	Limitations of evidence-base for screening 10 = major issue
Motivation and interest of staff	Motivation and interest of staff 1= no issue	Motivation and interest of staff 2	Motivation and interest of staff 3	Motivation and interest of staff 4	Motivation and interest of staff 5	Motivation and interest of staff 6	Motivation and interest of staff 7	Motivation and interest of staff 8	Motivation and interest of staff 9	Motivation and interest of staff 10 = major issue
Lack of access to specialist services	Lack of access to specialist services 1= no issue	Lack of access to specialist services 2	Lack of access to specialist services 3	Lack of access to specialist services 4	Lack of access to specialist services 5	Lack of access to specialist services 6	Lack of access to specialist services 7	Lack of access to specialist services 8	Lack of access to specialist services 9	Lack of access to specialist services 10 = major issue
Geographical referral base	Geographical referral base 1= no issue	Geographical referral base 2	Geographical referral base 3	Geographical referral base 4	Geographical referral base 5	Geographical referral base 6	Geographical referral base 7	Geographical referral base 8	Geographical referral base 9	Geographical referral base 10 = major issue
Policy of discharging patients to other hospitals/the community	Policy of discharging patients to other hospitals/the community 1= no issue	Policy of discharging patients to other hospitals/the community 2	Policy of discharging patients to other hospitals/the community 3	Policy of discharging patients to other hospitals/the community 4	Policy of discharging patients to other hospitals/the community 5	Policy of discharging patients to other hospitals/the community 6	Policy of discharging patients to other hospitals/the community 7	Policy of discharging patients to other hospitals/the community 8	Policy of discharging patients to other hospitals/the community 9	Policy of discharging patients to other hospitals/the community 10 = major issue
Failure of patients to attend regular scheduled follow- up appointments many years after SCT	Failure of patients to attend regular scheduled follow- up appointments many years after SCT 1= no issue	Failure of patients to attend regular scheduled follow- up appointments many years after SCT 2	Failure of patients to attend regular scheduled follow- up appointments many years after SCT 3	Failure of patients to attend regular scheduled follow- up appointments many years after SCT 4	Failure of patients to attend regular scheduled follow- up appointments many years after SCT 5	Failure of patients to attend regular scheduled follow- up appointments many years after SCT 6	Failure of patients to attend regular scheduled follow- up appointments many years after SCT 7	Failure of patients to attend regular scheduled follow- up appointments many years after SCT 8	Failure of patients to attend regular scheduled follow- up appointments many years after SCT 9	Failure of patients to attend regular scheduled follow- up appointments many years after SCT 10 = major issue
Other	Other 1= no issue	Other 2	Other 3	Other 4	Other 5	Other 6	Other 7	Other 8	Other 9	Other 10 = major issue

Other (please specify)

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* 17. If financial limitations are a barrier to introducing and developing effective late effects services do you think that this is a result of any of the following? (tick all that apply)

Political decision making at a National level

Hospital decision making

Departmental decision making

Other (please specify)