Managing the long-term consequences of sarcoma surgery and treatment at RNOH

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Cornelia Cannon
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1 Managing the long-term consequences of sarcoma surgery and treatment at RNOH Ruth Carr Macmillan Sarcoma Physiotherapist The Royal National Orthopaedic Hospital, London Sarcoma Service

2 Outline Overview of sarcoma and long-term consequences/complications RNOH Interventions: Inpatient rehab programme Review of rehabilitation QIDIS outcomes Therapy clinics Health & Well-being Days Questions & Discussion

Inpatient rehab programme Review of rehabilitation

3 Sarcoma 0.7% of all cancers Approximately 3000 cases a year(450 PMBT,750 GIST, 1700 STS) 0.7% of cancers deaths 1, 129 deaths Around 50 % survive 5 of more years 55% of sarcomas affect limbs function Often treated with a combination of surgery, radiotherapy +/- chemotherapy

4 Excision Endoprosthetic replacement Curettage +/- bone graft, cement, metal fixation Excision and bone transportation Reconstruction Surgical Options

5 Treatment & Surgery Complications Physical CV fitness Strength Limited ROM Fatigue Hot flushes Nausea Weight fluctuation Reduced mobility Dislocation Wound issues Aseptic loosening/mechanical failure Psychological Depression Anxiety Self esteem Loss of sense of control Altered body image Social isolation Helplessness Self-efficacy

Aseptic loosening/mechanical failure Psychological Depression Anxiety Self esteem

6 Preventing interventions Outpatient service 5 days per week Inpatient rehab programme Therapy Led clinics: Post-op clinic trialled 1x per fortnight Long-term (10 year+) clinic Health and Wellbeing Day 2 x per year for patients at end of treatment Patient information

trialled 1x per fortnight Long-term (10 year+) clinic Health and

7 Outpatient Service 5 days per week 2 x Band 7 and 1x Band 6 1 x Band 7 OT 60 min new patient and follow-up sessions land/hydro/functional practice/gait reeducation/exercise instruction inc. Gym and GP referral/motor learning lab

sessions land/hydro/functional practice/gait

8 Inpatient Rehab Programme Introduced in 2011 Contact patients at 6 months after complex soft tissue excision or endoprosthetic replacement Assessed for ongoing rehab or functional rehab needs including Inpatient rehab programme Sent letter and functional questionnaire to screen Assessed by phone or face-face if can attend NEW: Contact now trialled at 3 months post discharge for malignant sarcoma group to assess needs after surgery for a malignant sarcoma

programme Sent letter and functional questionnaire to screen Assessed by phone or face-face if can attend NEW:

9 Inpatient Rehab Programme - Content 5 days admission to Jubilee Rehab Ward Background: Patients achieving only basic function Patients lack confidence to return to previous function Reduction in local therapy input MDT approach: OT, PT, CNS, psychology/psychiatry, dietician, pain management if required OT and PT initial assessment for all and 2h PT and 1h OT per day

function Reduction in local therapy input MDT approach: OT, PT, CNS, psychology/psychiatry,

10 The programme (Cont d) Individual sessions to enable return to hobbies/ functional : On/off transport Going to shop Horse-riding Golf Exercise classes Gardening swimming Fatigue management: pacing & relaxation Land/water based sessions Gait re-education, walking aids review and referral to Motor learning lab CanRehab Instructor session and referral

Fatigue management: pacing & relaxation Land/water based sessions Gait re-education,

11 Improvement in Patient Specific Functional Score Results Average PSFS Admission Discharge 6 Week follow up Significant with a p value (t-test) Average % change 64.9% Average PSFS

12 Patient Feedback...They liked it! Specific tailored physio to benefit me I am so pleased I came on this course and was offered access. I can honestly say it has vastly improved my attitude, confidence and physical wellbeing. I have been given so many bits of advice for my condition to allow me to have a better QOL so I can live life not just exist New exercise regime, pushed me hard Great facilities physio gym, hydro and aspire My previous physio didn't know my boundaries, knowledgeable staff All staff 10/10 cant praise them enough for their expertise, patience and professionalism Supported by physios to achieve my goals

I have been given so many bits of advice for my condition to allow me to have a better QOL so I can live life not just exist New exercise regime, pushed me

13 Challenges with Rehab Programme Staffing to enable joint OT and PT assessments and interventions for inpatient rehab programme Admin time related to coordinating rehab admissions Identifying patients for rehab Tertiary centre location and travel for patients to attend Bed availability on Jubilee Rehab Ward Funding Trust agenda of reducing length of stay

admissions Identifying patients for rehab Tertiary centre location and travel for

14 QIDIS Evaluation and model of rehabilitation for primary malignant bone sarcoma patients after limb salvage surgery. Hudson, Bamdad, Briggs (2014). International Journal of Therapy and Rehabilitation. Volume 21 (8):

salvage surgery. Hudson, Bamdad, Briggs (2014).

15 Developing a sarcoma rehab service specification Earlier contact earlier admission Well-being day 2 x per year Improved patient information QIDIS Rehab Model

16 Patient Information & Communication Rehab guidelines including milestones and identification of complications New exercise and advice booklets Review of patient information across the 5 centres Sarcoma UK hosting rehab information for England centres Patient discharge reports Communication with UCLH therapists

patient information across the 5 centres Sarcoma UK hosting rehab information

17 Physiotherapy Post-op Clinic Introduced after results of QIDIS in April 2014 Trialled in one clinic Referrals from consultant, CNS, SpR, therapists Intervention: General advice about returning to hobbies/current physio Referral onto local PT Double assessments with consultant/spr Referrals for inpatient rehab Referrals to orthotics Walking aid assessment/provision

about returning to hobbies/current physio Referral onto local PT Double assessments with

18 Health & Well-being Days Started in 2012 Held 2 x per year 1 day Led by CNS and OT Attended by consultant surgeon, OT, PT, CNS, Psychology, Psychiatry, Dietetics, Complementary Therapies, Charities Small groups

19 Long-term follow-up Long term follow- up by Physio at 10 years Introduced in 2012 to improve patient outcomes and experience and reduce clinic demands for consultant review How: Patients identified with an EPR Annual surgical review clinic after 10 years from initial diagnosis and surgery No ongoing complications e.g. wound/oncology treatment

review How: Patients identified with an EPR Annual surgical review clinic after 10

20 Long-term follow up clinic Intervention: Bimonthly physio led clinic in consultant session X-ray Functional review Non-medical referrer Evaluation: Patient experience

21 Long-term Functional Outcomes Collected lower limb Toronto Extremity Salvage Score (TESS) scores functional outcome measure 32 questions, likert questions scoring 1-5 High score = better function Low score = worse function

22 Long-term Functional Outcomes TESS scores Mean 25 people 74.6 Min score 15 Max score people completed TESS Specific Functions: a little bit difficult (>4/5) for: showering, getting out of bed, walking in the house, socialising with friends and family moderately difficult (3/5) for: gardening/yardwork, getting in/out of a bath, driving, walking up or down hills, participating in usual sporting activities Extremely difficult (2/5) for: kneeling and getting up from kneeling

23 Long-term clinic: Patient Satisfaction 100% reported that the reason for their appointment had been accomplished. 100% of patients reported above average or excellent for all questions Over 80% reported that their confidence in the professional, the time taken to answer questions and that the staff seeing to their individual needs was excellent. The willingness of staff to listen to the patient was also rated as excellent by 86%.

24 Clinic Intervention & Feedback Intervention: Very helpful and a lot easier Physiotherapy referrral Physical Activity advice Physiotherapy exercises Orthotics referral I was interested in how this new service would run but came to my appointment as I have wanted to speak to a physio for a while to see if there was anything else I could do to improve my function. Wish I could have spoken to someone earlier. Consultant None I actually feel this has been one of the more thorough appointments I have had. I feel as if I have made progress and it has given me things to work on.

25 Thank-you for listening. Discussion and Questions?

Rehabilitation Services within Essex Cancer Network for people with Brain & CNS tumours

Rehabilitation Services within Essex Cancer Network for people with Brain & CNS tumours The NICE IOG for people with Brain & other CNS tumours (2006) states that patients with such tumours should have