SDO Project timetable – version 7 July 13th, 2010

© Queen’s Printer and Controller of HMSO 2013. This work was produced by Mason et el. under the terms of a commissioning contract issued by the Secretary of State for Health

Project 08/1813/258

Annex 1 – Final Gannt chart Phase 1: Scoping Phase 2: Case studies Phase 3: Consensus building

Months 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27

Literature review

Identifying good practice

Ethics/R&D

Case1 Edinburgh- ethnography

Serial interviews

Service Usage

SEA meeting

Case2 Warwick - ethnography

Serial interviews

Service Usage

SEA meeting

Case3 London - ethnography

Serial interviews

Service Usage

SEA meeting

Mgt Fellowship

Data analysis

e-Delphi survey

Scot Workshop

Eng. Workshop

Report writing

Steering group X X X X X X X X X X X X X X

Advisory group PRN

Interim reports X X X X

Annex 2 – SPICT version 8 (June 2010)

© Queen’s Printer and Controller of HMSO 2013. This work was produced by Mason et el. under the terms

of a commissioning contract issued by the Secretary of State for Health

Project 08/1813/258

Annex 3 – Patient recruitment sampling grid The sampling frame used in the Scotland study is repeated here. As can be seen, the primary

determinant was trajectory. When comparing with table 8 it can be seen that we achieved 2 with

cancer, 11 with organ failure and 9 with frailty. Patients E5 and E40 had frailty combined with organ

failure and cancer respectively. The difficulty in recruitment meant that other determinants (such as

diagnosis) were only partially met.

Trajectory sex age diagnosis Co-morbid Alone/carer

/care home

Depcat /postcode

1 cancer New/met Alone

2 cancer Carer

3 Organ failure COPD diabetes alone

4 Organ failure COPD HF carer

5 Organ failure COPD alone

6 Organ failure HF diabetes carer

7 Organ failure HF COPD

8 Organ failure Renal

9 Organ failure Liver

10 Organ failure

11 Organ failure

12 Frailty Stroke Mild dementia Nursing home

13 Frailty Off legs Alcohol Care home

14 Frailty Off leg Arthritis Home alone

15 Frailty Chest infection Parkinsons

16 Frailty UTI MS

17 Frailty confused Side effects

18 Frailty Chest infection Net high morbidity

19 Frailty Social Carer issues

20 Frailty Social

© Queen’s Printer and Controller of HMSO 2013. This work was produced by Mason et el. under the terms

of a commissioning contract issued by the Secretary of State for Health

Project 08/1813/258

Annex 4 – Serial interview guide

Research Study: Co-ordination of care for people affected by an illness (CoPAI)

Preamble

This guide is to be used for both patients and carers. The questions should be

oriented accordingly. The intent is for the conversation to be largely patient-led

and using language appropriate to how the participant talks. The focus is on

talking about specific incidents. To ensure compatibility among interviews done

by different researchers, certain “core probes” have been flagged. These will

either be asked (or noted) at a natural point in the conversation or asked as

outlined below. This guide is for a serial interview project therefore there are

specific sections for initial, subsequent and final interviews.

Pre-recording checklist

Summarise interview process. Remind participants that they can stop or take a

break at any time.

Ask if the participants have any further questions and check that they are

comfortable.

Check and complete written consent before each interview. If more than one

person present, ensure that all give consent.

If permission has been given to record, switch on recorder and verbally record:

date, time and location.

Have each person identify themselves to the recorder and record verbal consent

to be recorded.

1. Introductions

1.1. First Interview.

1.1.1. Ask for background information from each person and their

relationship to each other. Ask how they became involved in the

project.

1.2. Subsequent interviews

1.2.1. Reminder from each person of who they are. Ask for a quick

summary of what they remember about the project. Clarify any

misunderstandings.

© Queen’s Printer and Controller of HMSO 2013. This work was produced by Mason et el. under the terms

of a commissioning contract issued by the Secretary of State for Health

Project 08/1813/258

1.3. All interviews. Ask if they have any questions.

2. Health condition(s)

2.1. All interviews.

2.1.1. How are things at the moment? (General, listen for participant’s most important issues.)

2.1.2. Can you tell me a little about your illness and how it has developed?

(diagnosis, prognosis) Have things changed since last time we saw

each other?

2.1.3. Do you have any problems at the moment? (symptoms)

2.1.4. Who is looking after your care just now? (current care)

2.1.5. Is there anyone else who is giving you any kind of support?

2.1.6. Is there any more help that you need? (possible care/support needs)

2.1.7. Do you feel that the people involved share information about you

properly? (coordination)

3. Interactions with NHS

3.1. First interview:

3.1.1. Can you tell me about your visit to Combined Assessment.

3.1.1.1. Can you tell me about how you got admitted and what

happened?

3.1.1.2. Can you tell me what happened once you got there and who

you saw?

3.1.1.3. How you do you feel about what happened?

3.1.1.4. Did it seem as though they knew everything they needed to

about you? (coordination)

3.1.1.5. Did you understand everything you were told? Do you feel

you have enough information? Why was that?

3.1.1.6. Can you tell me about your discharge? Did you go home or to

a ward? What were you given?

3.1.2. After visit to Combined

3.1.2.1. Can you tell me what happened after your visit to combined?

Who did you see? Were the people you saw new or have you seen

them before?

3.1.2.2. How you do you feel about what happened?

3.1.2.3. Did it seem as though they knew everything they needed to

about you? (coordination)

© Queen’s Printer and Controller of HMSO 2013. This work was produced by Mason et el. under the terms

of a commissioning contract issued by the Secretary of State for Health

Project 08/1813/258

3.1.2.4. Did you understand everything you were told? Do you feel

you have enough information?

3.1.2.5. Is there anyone you still see regularly? About how often do

you see x? How do you find that.

3.1.2.6. Is there anyone else involved in your care now who is

important?

3.2. Subsequent interviews: Can you remind me briefly about going to

Combined Assessment that we talked about last time. [To check changing perceptions over time].

3.2.1. Who else have you seen since last time? Check following details for

each example.

o How were you referred? Did you have to wait long? What treatment

did you receive? Do you feel that you understood what you were

told? Did it seem as though they knew everything they needed to

about you?

3.2.2. Have you had anything to do with the social services (or other

services) since last time? Did it seem as though they knew everything

they needed to about you?

4. Perceptions of Future Care

4.1. All interviews. What is planned to happen in the next few weeks? After

that? Do you talk about future care with anyone?

5. Perceptions of Current and Past Care

5.1. First interview: remind that we’re doing a study about coordination. What

does coordination mean to you? (Likely to be hard to answer.) Do you feel

your care has been well coordinated? Could it have been improved?

5.2. All interviews. Has there ever been an occasion when something you

expected to happen didn’t happen-can you tell me about that?

5.3. All interviews. Or has there ever been a time when things happened that

you perhaps didn’t expect?

5.4. Subsequent interviews. We talked about coordination last time and you

said <<brief summary>>. Do you feel that the care you have just been

talking about has been well coordinated? Could it be improved? Is there

anything that would really make a difference?

5.5. All interviews. Do you feel that the care you have received is what usually

happens ? Do you know other people who have had different experiences?

Have you heard about other experiences? (In media? Word-of-mouth?)

© Queen’s Printer and Controller of HMSO 2013. This work was produced by Mason et el. under the terms

of a commissioning contract issued by the Secretary of State for Health

Project 08/1813/258

6. Wrap Up

6.1. All interviews. Wrap up. Ask if they have any questions they would like

to ask. Check that the interview was ok for them and if they are happy to

do something similar next time. Ask if there’s anything they would like to

add. At final interview, ensure that all participants have your contact

details and ensure that they know you will be in touch about the project.

Thank you!

© Queen’s Printer and Controller of HMSO 2013. This work was produced by Mason et el. under the terms

of a commissioning contract issued by the Secretary of State for Health

Project 08/1813/258

Annex 5 – Client Service Receipt Inventory

Co-ordination of care for people affected by an illness (CoPAI)

Date of entry: _______________________________________________ _____________________

Researcher _______________________________________________________________________

Participant ID: ____________________________________________________________________

ECOG Performance scale. __________________________________________________________

Grade ECOG

0 Normal activity able to carry on all pre-disease performance without restriction

1 Restricted in physically strenuous activity but ambulatory and able to carry out work

of a light or sedentary nature, e.g., light house work, office work

2 Ambulatory and capable of all selfcare but unable to carry out any work activities.

Up and about more than 50% of waking hours

3 Capable of only limited selfcare, confined to bed or chair more than 50% of waking

hours

4 Completely disabled. Cannot carry on any selfcare. Totally confined to bed or chair

Notes for researcher

Use box 1 for in-patient services, box 2 for out-patient services and box 3 for services

provided in facilities such as day hospices.

Box six is to be used only for services provided in the community (e.g at home or at a GP

practice). If the participant refers to services that might have been provided in a hospital or

clinic or equivalent (for example a physiotherapy assessment that might have occurred during

an in-patient stay) while answering questions in box 6 then clarify where the respondent

received the service. If the answer refers to a visit mentioned in boxes 1-3 do NOT record it

in box 6.

Do not itemise individual services received in hospital (whether in- or out-patient) or in

institutions such as hospices, care homes etc

© Queen’s Printer and Controller of HMSO 2013. This work was produced by Mason et el. under the terms

of a commissioning contract issued by the Secretary of State for Health

Project 08/1813/258

Services Inventory

1. (In-patient services) Please give details of any stays you’ve had in hospital during the

past 3 months (including stays that began before 3 months ago and stays that have not

finished yet).

Reason for admission Length of stay Hospital

2. (Out-patient services)Please give details of any times you’ve received treatment at a

hospital or clinic but have not stayed overnight at the hospital or clinic during the past 3

months.

Reason Number

of visits

How long did it

take to get there?

Travel &

parking costs

Who (if anyone)

accompanied you?

3. (Day visits). Please give details of times you’ve attended a centre where you’ve received

special or extra attention, for example, a day care or day-hospice environment, during the

past 3 months

Reason Number

of visits

How long did it

take to get there?

Travel &

parking costs

Who (if anyone)

accompanied you?

4. How many visits to Accident and Emergency have you made during the past 3 months? _______

5. How many times has an emergency ambulance been called for you during the past 3

months? _________________________________________________________________________

© Queen’s Printer and Controller of HMSO 2013. This work was produced by Mason et el. under the terms

of a commissioning contract issued by the Secretary of State for Health

Project 08/1813/258

6. (Community services) Please give details of any of the following services that you have

used during the past 3 months (Please do not include services included in Questions 1-4.)

Service Circle No of

contacts

No contacts at

home?

Usual travel time

for non-home visits

GP (face-to face) No Yes

GP (telephone contact) No Yes NA NA

NHS Direct / NHS24 No Yes NA NA

Practice nurse No Yes NA

District nurse No Yes

Palliative care nurse No Yes

Lung (respiratory) nurse No Yes

Other nurse eg, Heart failure,

cancer No Yes

Chiropodist / podiatrist No Yes

Dietician No Yes

Physiotherapist No Yes

Therapist/counsellor

(e.g. Psychologist, Psychiatrist,

counsellor etc)

Specify:

No Yes

Religious or spiritual support

Specify:

No Yes

Other

Specify:

No Yes

Occupational therapist No Yes

Social worker No Yes

Home help / home care worker No Yes

Meals-on-wheels No Yes NA NA

© Queen’s Printer and Controller of HMSO 2013. This work was produced by Mason et el. under the terms

of a commissioning contract issued by the Secretary of State for Health

Project 08/1813/258

Support group (e.g., self-help

group)

Specify

No Yes

7. During the past 3 months, have you received help from friends or relatives with any of

the following tasks, as a consequence of your health problems?

Type of help Circle Helper’s relationship to

you (see key below)*

Usual number of

hours help per

week

Child care

(circle ‘No’ if interviewee

has no children)

No

Yes

Personal care

(e.g. washing, dressing)

No

Yes

Help in or around the house

(e.g., cooking, cleaning.)

No

Yes

Help outside the home

(e.g., shopping, transport.)

No

Yes

Accompanying you when

you have received treatment

No

Yes

Other (specify)

________________

No

Yes

* Key: 1 = spouse/partner; 2= Mother; 3 = Father; 4 = Brother/Sister; 5 = Daughter/ Son, 6 =

Other Relative; 7 = Friend; 8 = Other (please specify)

8. Employment status (circle all that apply)

Paid employment - full-time __________________________ 1

Paid employment – part-time _________________________ 2

Voluntary work (unpaid)_____________________________ 3

Sheltered work ____________________________________ 4

Registered as unemployed but available for work _________ 5

Unemployed due to illness ___________________________ 6

Retired ___________________________________________ 7

Student __________________________________________ 8

Housewife/husband _________________________________ 9

Other _____________________________ _________ 10

© Queen’s Printer and Controller of HMSO 2013. This work was produced by Mason et el. under the terms

of a commissioning contract issued by the Secretary of State for Health

Project 08/1813/258

9. If you have been in work during the past 3 months how many days have you had off due to

health problems? __________________________________________________________________

10. During the past three months, how many days off work have any relatives or friends had

as a consequence of