Adaptation and content validation of a patient-reported measure of treatment burden for use in stroke survivors: the patient experience with treatment and self-management in stroke (PETS-stroke) measure

Figures & data

Figure 1. Conceptual model of stroke treatment burden.

Conceptual model of stroke treatment burden shows the patient at the centre with four types of work surrounding in a circle: ‘making sense of stroke management and planning care’, ‘interacting with others’, ‘enacting management strategies’ (including: Institutional admissions, managing stroke in the community; reintegrating into society; adjusting to life after stroke’) and ‘reflecting on management’.

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At the centre of the conceptual model of stroke treatment burden is the Patient in a dark blue circle, the dark blue circle has four arrows pointing to four mid-blue boxes (positioned at north, east, south and west) surrounding the dark blue patient circle. Between the mid-blue boxes are double ended arrows, creating an outer circle around the dark blue patient circle. The boxes contain different kinds of work encountered by patients. The north box states ‘Making sense of stroke management and planning care’. The east box states ‘Interacting with others’. The south box states ‘Enacting management strategies’. The west box states ‘Reflecting on management’. Beneath the south box ‘Enacting management strategies’, are four lines connecting to a further four light blue boxes in a row, each linked to the next light blue box by a line. The boxes contain four further kinds of work which contribute to the work of ‘Enacting management strategies. The first box states ‘Institutional admissions’, the second ‘Managing stroke in the community’, the third ‘Reintegrating into society’, and the fourth ‘Adjusting to life after stroke’.

Figure 2. Stages of content validation.

Flowchart illustrating stage 1 adaptation of PETS and stage 2 content validation of PETS-stroke including three rounds of recruitment, interviews and amendments to PRM.

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A two-stage flowchart showing the steps involved in first the adaptation of PETs and second the content validation of PETS-stroke. Stage 1: Adaptation of PETS. Downwards arrow pointing from oval containing ‘PETS’ to a box stating item amendment using taxonomy and conceptual model of treatment burden in stroke, followed by downward arrow pointing to oval containing ‘PETS-stroke’. Downwards arrow to Stage 2: Content validation of PETS-stroke. Oval shape stating 1st round of recruitment of 5 people in January and February 2020, linked to semi-circular arrow surrounding the words Round 1: cognitive interviews and amendments made to PRM. Another oval shape states 2nd round of recruitment of 5 people in January and February 2021. The first circular arrow points to a second, lower semi-circular arrow surrounding the words Round 2: cognitive interviews, version 2 PRM tested, and amendments made to PRM. A final oval shape linked to the second arrow states 3rd round of recruitment of 5 people in January and February 2021. The second arrow points to a final, lower semi-circle surrounding the words Round 3: cognitive interviews, version 3 PRM tested and final amendments made to PRM.

Table 1. Domains included in PETS and PETS-stroke.

Domains included in 60-item PETS	Domains included in 34-item PETS-stroke
Medical information Medications Medical appointments Monitoring health Diet Exercise or physical therapy Medical equipment Your relationship with others Medical and healthcare expenses Difficulty with healthcare services Role and social activity limitations Physical and mental fatigue	Medical information Care planning Medications Medical appointments Monitoring health Lifestyle Exercise or physical therapy Living at home with stroke Your relationships with others Medical and healthcare expenses Difficulty with healthcare services Role and social activity limitations Mental fatigue

Table 2. Self-reported participant characteristics.

	Number of participants (n = 15)
Gender	Male = 9 Female = 6
Age	50–59 = 5 60–69 = 5 70–79 = 1 80–89 = 4
Ethnicity	White Scottish = 11 White other = 4
SIMD Quintile^a	Quintile 1 = 3 Quintile 2 = 3 Quintile 3 = 4 Quintile 4 = 3 Quintile 5 = 2
Time since stroke	≤1 year = 2 >1 - 5 years = 5 >5 years = 6 Unknown = 2
Other health conditions (not including stroke)	0 = 5 1 = 2 ≥2 = 8
Number of medications	<5 = 5 5–10 = 8^b ≥11 = 2^c

^aScottish Index of Multiple Deprivation (SIMD). Quintile 1 refers to the 20% most deprived data zones in Scotland. Quintile 5 refers to the 20% lest deprived data zones in Scotland.

^bOne participant included over the counter medications.

^cOne participant was unsure of the different medications they took but estimated that they took approximately 20 tablets a day.

Table 3. Status of 34 PETS-stroke items post-content validation.

Item Status	Item	Total
Unchanged	1, 7, 8, 9, 10, 11, 17, 19, 20, 21, 22, 23, 25, 26, 30	15
Changed (not including timeframe)	2, 3, 4, 5, 6^a, 12, 13, 14, 15, 16, 18, 24, 27, 28, 29, 31, 32, 33, 34	19
Removed	N/A	0
Added	N/A	0

^aOrder in measure change, wording unchanged.

Table 4. Items included in PETS-stroke following item adaptation and finalised items following cognitive interviews.

Item Number	Items included in PETS-stroke following item adaptation	Finalised items in PETS-stroke following cognitive interviews
1	Over the past 4 weeks, how easy or difficult has it been for you to… Learn about and understand information about your stroke, other health problem(s) and recommended treatments?	No change
2	Over the past 4 weeks, how easy or difficult has it been for you to… Find sources of medical information that you trust?	How easy or difficult has it been for you to… Find sources of medical information e.g., a healthcare professional that you trust?
3	Over the past 4 weeks, how easy or difficult has it been for you to… Set goals for your recovery?	How easy or difficult has it been for you to… Set goals for your recovery or to stay healthy?
4	Over the past 4 weeks, how easy or difficult has it been for you to… Stay motivated to improve your health and functioning?	How easy or difficult has it been for you to… Stay motivated to improve or maintain your health and functioning?
5	Over the past 4 weeks, how easy or difficult has it been for you to… Organize your medicines?	How easy or difficult has it been for you to… Organize your medicines at home?
6	Over the past 4 weeks, how easy or difficult has it been for you to… Get repeat prescriptions?	No change
7	Over the past 4 weeks, how easy or difficult has it been for you to… Take your medicines as directed?	No change
8	Over the past 4 weeks, how easy or difficult has it been for you to… Cope with adjustments to your medicines made by healthcare professionals (for example the amount, type, or time when you take it)?	No change
9	Over the past 4 weeks, how bothered have you been by… Side effects of your medicine(s)?	No change
10	Thinking about your healthcare needs, over the past 4 weeks, how easy or difficult has it been for you to… Schedule and keep track of your medical appointments?	No change
11	Thinking about your healthcare needs, over the past 4 weeks, how easy or difficult has it been for you to… Find the time to get to your medical appointments?	No change
12	Thinking about your healthcare needs, over the past 4 weeks, how easy or difficult has it been for you to… Get to the clinic for your appointments?	Thinking about your healthcare needs, how easy or difficult has it been for you to… Physically get to the clinic for your appointments for example due to disability or transport issues?
13	Thinking about what you might do to take care of your health, over the past 4 weeks, how easy or difficult has it been for you to… Monitor your health, for example, recovery in hand and arm functions, recovery in your speech, weighing yourself, or checking your blood pressure?	Thinking about what you might do to take care of your health, how easy or difficult has it been for you to… Monitor your health, for example hand and arm functions, weight, signs of another stroke or anything else?
14	Thinking about the past 4 weeks, how much do you agree or disagree with the following statements? It is hard for me to follow my healthcare provider’s recommendations for healthy lifestyle.	How much do you agree or disagree with the following statements? It is hard for me to follow a healthy lifestyle e.g., healthy diet (either self-directed or recommended by a health care provider).
15	Thinking about the past 4 weeks, how much do you agree or disagree with the following statements? It is difficult for me to follow my healthcare provider’s recommendations about exercise or physical therapy.	How much do you agree or disagree with the following statements? It is difficult for me to follow exercise or physical therapy regimes (either self-directed or recommended by a health care provider).
16	Thinking about the past 4 weeks, how much do you agree or disagree with the following statements? I have other medical conditions or symptoms such as pain, shortness of breath or memory issues that make it difficult for me to take part in my stroke rehabilitation therapies	How much do you agree or disagree with the following statements? I have other medical conditions or symptoms such as pain, shortness of breath or memory issues that make it difficult for me to take part in my stroke rehabilitation therapies or look after my health.
17	Thinking about managing at home since your stroke, how much do you agree or disagree with the following statements? It is difficult to obtain mobility aids (such as a wheelchair or walking stick) or home adaptations (such as a bath rail or ramp).	No change
18	Thinking about managing at home since your stroke, how much do you agree or disagree with the following statements? I struggle to organize home carers or personal care services.	How much do you agree or disagree with the following statements? It is difficult to organize home carers or personal care services.
19	Thinking about managing at home since your stroke, how much do you agree or disagree with the following statements? It is difficult to obtain financial aid from the government (benefits).	No change
20	Over the past 4 weeks, how bothered have you been by… Feeling dependent on others for your healthcare needs?	No change
21	Over the past 4 weeks, how bothered have you been by… Your healthcare needs creating tension in your relationships with others?	No change
22	Thinking about your healthcare needs, over the past 4 weeks, how easy or difficult has it been for you to… Pay for healthy living (e.g., foods, exercise)?	No change
23	Thinking about your healthcare needs, over the past 4 weeks, how easy or difficult has it been for you to… Pay for walking aids or changes to your home such as a ramp?	No change
24	Thinking about your healthcare needs, over the past 4 weeks, how easy or difficult has it been for you to… Pay for your medicines?	Thinking about your healthcare needs, how easy or difficult has it been for you to… Pay for your medicines, if there are any not already covered by the NHS e.g., over the counter medications?
25	Thinking about your health care, how much do you agree or disagree with the following statements? I have problems with different healthcare providers not communicating with each other about my medical care.	No change
26	Thinking about your health care, how much do you agree or disagree with the following statements? Health professionals give me conflicting advice.	No change
27	Thinking about your health care, how much do you agree or disagree with the following statements? I don’t feel involved in decisions made about my health and care.	Thinking about your healthcare, how much do you agree or disagree with the following statements? I don’t feel involved enough in decisions made about my health and care.
28	Thinking about your health care, how much do you agree or disagree with the following statements? I have problems getting to see the right health professional at times that are convenient for me.	Thinking about your healthcare, how much do you agree or disagree with the following statements? I have problems getting to see the right health professional (e.g., GP, therapist or consultant) at times that are convenient for me.
29	Thinking about your health care, how much do you agree or disagree with the following statements? I am not offered enough therapy to recover from my stroke such as physiotherapy.	Thinking about your healthcare, how much do you agree or disagree with the following statements? I have not been offered enough therapy to recover from my stroke or maintain my health such as physiotherapy.
30	Thinking about your health care, how much do you agree or disagree with the following statements? My discharge from hospital was poorly planned by health professionals (e.g., inadequate follow up care).	No change
31	In the past 4 weeks, how much has your self-management interfered with your… Your usual roles, responsibilities and activities?	How much haslooking after your health impactedyour… Usual roles, responsibilities and activities, for example employment, caring duties or hobbies?
32	In the past 4 weeks, how difficult or easy have you found: Gaining support in your return to employment or other roles.	How difficult or easyhas it been for you to: Gain support in your return to employment or other roles.
33	In the past 4 weeks, how difficult or easy have you found: Gaining support in return to driving	How difficult or easyhas it been for you to: Find out about and gain support in return to driving.
34	In the past 4 weeks, how often did self-management negatively affect… Your mood?	How often didattempting to manage your health conditionsnegatively affect… Your mood?

Data availability statement

Access to anonymised data can be discussed by contacting the authors. The Patient Experience with Treatment and Self-management (PETS), including all versions, is protected by copyright to the Mayo Foundation for Medical Education and Research, © 2016, 2020, all rights reserved. The PETS (general measure) and its scoring are available by contacting Dr Kathleen Yost ([email protected]).