MDT Input for Ambulatory Radiotherapy Patients Current Practice and Future Challenges

1. MDT Input for Ambulatory Radiotherapy PatientsCurrent Practice and Future Challenges Adam Smith-Collins, Toyin Lythe & Sara Stoneham Children and Young People’s Cancer Service 3rd August 2011

2. Background • UCLH provides regional cancer services for children and young people in the south east of England • Paul’s House is a CLIC Sargent ‘home from home’ facility which provides accommodation for young people and families undergoing treatment at UCH and is an important element of facilitating ambulatory care • Ambulatory model of care can provide greater independence to patients & families and maximises clinical service capacity

3. Background • However, ambulatory care also provides challenges, particularly with regard to easy access to clinical services. • As emphasised by the NICE guidance on improving cancer services for children and young people, optimal outcomes depend on input from a broad multidisciplinary team. • Access to MDT services may be impacted upon by patients ambulating and spending less time in hospital. • Increasingly important issue as more patients ambulate.

4. Aims • To understand how ambulatory care model impacts upon the availability and delivery of input from various members of the MDT, and the implications of this for quality of patient care • To provide a framework for auditing multidisciplinary input to ambulatory patients which can be integrated with existing assessments of Paul’s House and ambulatory care standards.

5. Scope Focus on children and young people receiving radiotherapy treatment at UCLH, where the is significant experience of treating patients who are not ward resident, whilst the full ambulatory model is still being piloted for the CYPCS (rolling out fully later in 2011) Limited to children with solid tumours receiving radiotherapy as part of their primary treatment (i.e. not TBI or palliative patients) Avoid overlap with existing audits around Paul’s House as a facility and general patient experience (although ultimate aim would be to integrate these together).

6. Sampling • 6 month retrospective data (Jan – June 2011) - Children under 16 years old who received radiotherapy identified through radiotherapy team’s records - Structured questionnaire for MDT members to fill out using their records (Physiotherapy/ Occupational Therapy / Play Therapy in this audit. Aim to widen in future) • 1 month prospective data (July 2011) - Children under 16 years old currently receiving radiotherapy identified on T11N & T11N daycare - Structured questionnaire for patients & parents

7. Audit Standards Professionals Assessment Objective assessments of sessions delivered to individual patients Subjective assessments of: - Session effectiveness - Ease of access - Resource availability - Interprofessional communication Patient/Parent Assessment Subjective assessments of: - Frequency of input - Ease of access - Facilities Assessed on 5 point scale (1=very good – 5 = very poor) for: Medical team Physiotherapy OT Play therapy Dietetics Psychology

8. Audit Standards For both professional and patient assessments, comparisons between time spent as fully resident inpatient, ward attender and full ambulatory care. Target standard is for all patients to achieve equivalent and satisfactory access to all professionals from the MDT regardless of whether inpatient or ambulating.

9. Audit Sample 30 patients meeting inclusion criteria received radiotherapy between January and July 2011: Diagnoses: 15 CNS tumours 6 Sarcomas or related soft tissue tumours 4 Neuroblastomas 3 Wilms tumours 2 Other Total treatment weeks: Inpatient 22 weeks Ward attender 37 weeks Fully ambulatory 125 weeks

10. Audit Sample 6 patients/parents completed questionnaire as part of prospective audit: Diagnoses: 4 CNS tumours 1 Sarcomas or related soft tissue tumours 1 Other Total treatment weeks: Inpatient 5 weeks Ward attender 19 weeks Fully ambulatory 8 weeks NB Demographic and clinical characteristics of patients rather different between groups

11. Sample Questionnaires

12. Parent/Patient Responses Review / Availability Resources Mean score Mean score 1 = very good; 2 = good; 3 = reasonable; 4 = poor; 5 = very poor

13. Professionals Responses Mean score 1 = very good; 2 = good; 3 = reasonable; 4 = poor; 5 = very poor

14. Professionals Responses T11, Daycare + RTx Physio/OT referrals by patient type (2010) N = 53 • The patients sampled by this audit represent a substantial proportion of MDT workload • The number of patients who require input but are not ward resident is certain to rise • Therefore the highlighted differences in service provision are crucial to address

15. Feedback Themes • Wide range of comments and suggestions from parents and professionals, but recurrent themes identified. • Parents/patients valued the multiprofessional services they received highly, particularly when resident on T11N. • Those who found it more difficult to access services would have liked greater access. • The most frequently highlighted issue (by 5/6 parents/patients and 2/3 professionals) was lack of dedicated space for therapy.

16. Feedback Themes • Lack of certainty about times and duration of sessions delivered by professionals. • Lack of coordination between different services and, in particular, transport. • Less coordination and communication between different professionals for patients who are not ward resident (although recent improvements identified e.g. radiotherapy representation at T11 MDT meeting). • Lack of dedicated time and expectation of complete flexibility in contact with ambulatory patients results in fewer sessions and smaller proportion of time to actually deliver input to patients. • Difficultly in accessing and recording information for patients who are not in the same place as their notes!

17. Summary • Multi-disciplinary input is a crucial aspect of the patient journey, and is vital for optimising outcomes for children and young people with cancer. • For the group sampled, there is an excellent level of provision for patients who are resident on T11N, and the services are highly valued. • There are a number of challenges identified in providing this input to patients who are not ward resident. Chiefly, these are: • Lack of dedicated space • Lack of integration across MDT • Verbal and written communication • The CYPCS is moving to a model of service delivery which will have a larger number of non-resident patients and it will be crucial to address the challenges identified in order to optimise care.

18. Recommendations • Service Integration: • Focus on provision of integrated care package coordinated around patient attendances. • Shared diary for ambulatory care patients, accessible by all MDT members. • Mobile access to patient information ?handheld notes ?electronic recording. • Resources: • Dedicated space (either full time or bookable) for delivery of MDT input. • Time allocation within MDT members job plans to account for appropriate levels of input to ambulatory patients.

19. Recommendations • Development and reassessment: • Integration of simplified version of parent/patient MDT access questionnaire with existing tools for service assessment (e.g. PH questionnaire). • Broaden scope to include chemotherapy patients as ambulatory care model rolls out. • Re-audit professionals’ views, and include all members of the MDT • Outcomes and justification: • End-of-treatment summaries to include specific sections on input from MDT members. • Outcome monitoring, including function and QOL measures – vital to show value added of being able to give integrated care (and attract more resources!)

20. Special Thanks • Ali Finch (CYCPS Matron) • Abu Sidhanee (Senior Physiotherapist) • Sheree Tyrell (Occupational Therapist) • Emma Franks (Play Therapist) • Mark Williams (Superintendant radiographer) • CLIC Sargent / Paul’s House team • Participating patients & families