1 6 th National Children & Young People Survivorship Workshop A GP perspective Una Macleod Professor of Primary Care Medicine Primary care cancer lead, HYCCN Hull York Medical School

2 What can you expect from GPs? What do GPs want from you? Role of GPs

3 GPs will see children and young people with cancer rarely in their working lives A practice is very unlikely to have more than one child/young person with cancer at any given time GPs are generalist, family doctors Context

4 The development and testing of a tool to structure cancer care reviews in general practice Funded by Macmillan Cancer Support Work done in Glasgow Research team: Una Macleod, Liz Mitchell, Susan Browne, David Linden, Pat Quinn GPs and cancer patient reviews

5 Background GMS Contract, QOF and cancer care reviews 655 clinical points, 11 cancer points Cancer register Cancer care reviews cancer review “to cover the patient’s individual health support needs” and “the co-ordination of care between sectors.”

6 Issues What is the role of primary care in the management and follow up of patients with cancer? supportive and coordinating follow up, detection of recurrence, assessment management of physical and psychological co- morbidities Need to produce evidence to inform the quality care agenda and produce quality measures to assess performance

7 Aim To develop and test the feasibility of conducting a structured cancer care review in primary care

8 Research Questions 1. What models of cancer care review, relevant to patients, primary care and the NHS, can be identified and supported by research evidence? 2. What do patients, primary care professionals and primary care cancer care opinion leaders believe are the essential elements of a cancer care review? 3. How do practices currently carry out cancer care reviews? 4. How do newly diagnosed cancer patients currently view the input received from primary care? 5. Is the structured care review feasible in practice and what barriers would there be to its implementation?

9 Overview of methods STRAND 1: Identify the essential elements of a cancer care review STRAND 2: Development and construction of the cancer care review tool STRAND 3: Feasibility study

10 STRAND 1: Essential elements of a cancer care review A. Literature review of primary care input following cancer diagnosis B. Secondary analysis of interviews with patients with colorectal cancer C. Interviews with primary care professionals D. Focus groups with lay representatives of people affected by cancer E. Questionnaire survey of general practices on existing cancer care reviews

11 STRAND 1: Essential elements of a cancer care review A. Literature review of primary care input following cancer diagnosis B. Secondary analysis of interviews with patients with colorectal cancer C. Interviews with primary care professionals D. Focus groups with lay representatives of people affected by cancer E. Questionnaire survey of general practices on existing cancer care reviews

12 Questionnaire to practices

13 Participating practices 110 Qs returned – 89 GG&C / 21 A&A Overall response rate – 32.7% 575,000 patients represented 11% Scottish population Average list 5,693 (1,223 – 13,162) 31.7% with more than half of patients living in top 15% most deprived areas

14 Workload Average of 21 patients per practice diagnosed in previous 12-months Median: 17 Range: 1 – 100 Majority of patients had cancer care review (as per QOF framework) >75% in 82% of practices Mean: 92% Range: 1 – 100%

15 Timing of review When does cancer care review in your practice typically take place? REVIEW TIMINGPRACTICES (%) Within 1 month of diagnosis58 (52.7) Within 6 months of diagnosis48 (43.6) 6-12 months after diagnosis2 (1.8) Other2 (1.8) 2 practices did not respond to the question

16 Frequency of review How often are reviews undertaken for cancer patients in your practice? REVIEW FREQUENCYPRACTICES (%) Once only27 (24.5) Once a year9 (8.2) Twice a year12 (10.9) 3-4 times a year9 (8.2) As required31 (28.2) Monthly (esp. palliative patients) 12 (10.9) Other8 (7.3) 2 practices did not respond to the question

17 Frequency of review What initiates a cancer care review for a patient? INITIATION METHODPRACTICE (%) ONLY METHOD Practice protocol / reminder71 (64.5)50 (45.6) Request by patient7 (6.4)— Request by other person1 (0.9) Conducted opportunistically45 (40.9)25 (22.3) All methods used2 (1.8)— Other8 (7.3)5 (4.5) 3 practices did not respond to the question

18 Responsibility for review Who typically has responsibility for completing cancer care reviews? INITIATION METHODPRACTICE (%)ONLY PERSON GP102 (92.7)90 (81.8) Practice nurse4 (3.6)2 (1.8) District nurse12 (10.9)2 (1.8) All practitioners involved2 (1.8)— Other2 (1.8)

19 Format of review What is the most common method of completing cancer care review? INITIATION METHODPRACTICE (%) ONLY METHOD Face-to-face consultation93 (84.5)80 (72.2) Telephone consultation5 (4.5)— Review of medical record22 (20.0)13 (11.8) Other5 (4.5)3 (2.7) 1 practice did not respond to the question

20 Content of existing cancer care review: 1

21 Content of existing cancer care review: 2

22 Content of existing cancer care review: 3

23 “... most important element of a review” Many varied comments, but most fell into the following categories: Communication: doctor/patient relationship issues exploring ideas, concerns and expectations about cancer diagnosis with other team members with secondary care Addressing unmet needs: symptom assessment and control how they are being affected by the illness psychological issues, fears for the future, emotional issues “How can I help you?” “Personal contact”

24 Professional interviews

25 What GPs said - I The current cancer care review carried out as part of QOF could be improved on relative to other conditions. Apprehension over the nature of any proposed change and the possible impact on existing workload and the doctor-patient relationship. Reluctance for formal measures within assessment Patient centred assessment key

26 What GPs said - II Key aspects of a review were: considered to be: o patients’ understanding and experience o patients’ wishes and expectations o psychological and emotional assessment o assessment of symptoms o medication review.

27 The Glasgow Cancer Care Review Template Assessment of physical need Medication review Assessment of psychological need Signposting of relevant services

28 What GPs want from you Information Timely Appropriate Guidance Awareness of GP role Generalist Family doctor

29 The world is changing: what will it mean..?