Table 2 Issues regarding MyPOS items identified in focus groups (n = 11) and cognitive interviews (n = 9)

1

What have been your main problems and concerns at the moment?

−/ POS

The patients wished for a free text field instead of the original enumerated list, and the question line was shifted into the free-text field in order to avoid patients overlooking the question.

Yes

2

Below is a list of symptoms, which you may or may not have experienced. For each symptom please tick one box that best describes how it has affected you over the past week.

Patients differentiated between problems associated with illness and with therapy with a tendency to overlook therapy side effects. In order to clarify, we added “Below is a list of symptoms and side effects”.

Yes

The time frame of 1 week was perceived to be too short by patients and HCP. Patients reported about serious issues that happened sometime in the past - severity of the issue was the pivotal factor rather than point of time. Experts discussed accepting that patients may also report issues from the past still relevant to their current situation to inform the consultation.

No

Pain

Symptoms/ POS

Good comprehension, retrieval, judgement, and response choice by all patients.

No

Shortness of breath

Symptoms/ POS

Good comprehension, retrieval, judgement, and response choice by all patients.

No

Weakness or lack of energy

Symptoms/ POS

Good comprehension, retrieval, judgement, and response choice by all patients.

No

Nausea (feeling like you are going to be sick)

Symptoms/ POS

Good comprehension, retrieval, judgement, and response choice by all patients.

No

Vomiting (being sick)

Symptoms/ POS

Good comprehension, retrieval, judgement, and response choice by all patients.

No

Appetite loss

Symptoms/ POS

Good comprehension, retrieval, judgement, and response choice by all patients.

No

Constipation

Symptoms/ POS

Good comprehension, retrieval, judgement, and response choice by all patients.

No

Sore or dry mouth

Symptoms/ POS

Good comprehension, retrieval, judgement, and response choice by all patients.

No

Drowsiness

Symptoms/ POS

One patient wanted to add sleeping problems, which she discovered to do in the list thereafter.

No

Poor mobility

Symptoms/ POS

Good comprehension, retrieval, judgement, and response choice by all patients.

No

Diarrhoea

Symptoms

Good comprehension, retrieval, judgement, and response choice by all patients.

No

Tingling in hands/feet

Symptoms

Good comprehension, retrieval, judgement, and response choice by all patients.

No

Problems remembering

Symptoms

One patient differentiated between problems remembering things and concentration problems. This was not addressed by other focus group members.

No.

Over the past week…

3

Have you been feeling anxious or worried about your illness and treatment?

Emotions/ POS

Expert discussion whether to delete “illness” or both “illness and treatment” because of content overload and Q17 also addressing illness worries. Some patients found that worries about treatment differed from illness. The parent instrument developer team confirmed deletion of “illness” from the German Q3.

Yes

4

Have any of your family or friends been anxious or worried about you?

Emotions/ POS

Good comprehension, retrieval, judgement, and response choice by all patients.

No

5

Have you been feeling depressed?

Emotions/ POS

Good comprehension, retrieval, judgement, and response choice by all patients.

No

6

Have you felt at peace?

Emotions/ POS

Good comprehension, retrieval, judgement, and response choice by all patients.

No

7

Have you been able to share how you are feeling with your family or friends as much as you wanted?

Emotions/ POS

Good comprehension, retrieval, judgement, and response choice by all patients.

No

8

Have you had as much information as you wanted?

Emotions/ POS

Patients from the German population and the generation/ age of typical myeloma manifestation may prefer to receive no or less information in general or currently. Further testing involved showing patients the former POS answer options for that item. All but one patient preferred the latter.

Yes

9

Have any practical problems resulting from your illness been addressed? (such as financial or personal)

Emotions/ POS

This item proved to be the most challenging in the translation. Although most patients understood it well and reported no problems during cognitive interviews, there was a high potential for misunderstanding with this item. Participants proposed asking this question in a simple and more direct way. The consented adaptation now reads: ‘Do you wish you had support for practical problems that have arisen from your disease (e.g. financial or personal issues)?’

Yes

10

Have you been able to carry out your usual activities without help from others?

Emotions

Good comprehension, retrieval, judgement, and response choice by all patients.

No

11

Have you been able to pursue your hobbies and leisure activities?

Emotions

Good comprehension, retrieval, judgement, and response choice by all patients.

No

12

Have you been able to spend quality time with family and friends?

Emotions

Good comprehension, retrieval, judgement, and response choice by all patients.

No

We would like you to answer this question whether or not you are sexually active. If you prefer not to answer then please tick here:

Emotions

Good comprehension, retrieval, judgement, and response choice by all patients.

No

13

Have you been worrying about your sex life?

Emotions

Good comprehension, retrieval, judgement, and response choice by all patients.

No

14

Have you been worrying about infections?

Emotions

Good comprehension, retrieval, judgement, and response choice by all patients.

No

15

Have you been worrying about your physical appearance?

Emotions

Good comprehension, retrieval, judgement, and response choice by all patients.

No

16

Have you been worrying about your financial situation?

Emotions

Good comprehension, retrieval, judgement, and response choice by all patients.

No

17

Have you been worrying that your illness will get worse?

Emotions

Good comprehension, retrieval, judgement, and response choice by all patients.

No

18

Have you felt able to cope with your illness and treatment?

Emotions

Good comprehension, retrieval, judgement, and response choice by all patients.

No

19

Are you able to contact your doctors or nurses for advice if needed?

Support

Interviewed patients, family, and staff argued for further differentiating these three questions. It was felt that their content does not directly address the patients’ QoL. Patients found doctors and nurses should be asked about separately. However, they were concerned about inadvertently blaming members of the health care profession: patients meet a high number of HCP and the questions ask to make a judgment for this whole group, contrary to the real-world situation in which patients might only have had one bad encounter. Overall, these concerns could very well lead to diminished acceptance of the MyPOS with patients and their families as well as HCP and lead to non-responses. Therefore, these items were removed.

Yes

20

Do your doctors and nurses show a good standard of knowledge and skill when treating you?

Support

Yes

21

Do your doctors and nurses show care and respect when treating you?

Support

Yes

22

Do you have enough information about what might happen to you in the future?

Emotions

Good comprehension, retrieval, judgement, and response choice by all patients.

No

End of question-naire

Some patients wished for a free-text field at the end of the questionnaire due to this being the place to expect them. A note referring to the free-text option at the beginning of MyPOS would help preserve the open-ended focus on the patient’s main problems at the beginning of MyPOS and facilitates the use of the free-text field for issues important to the patient but not addressed in the questionnaire.

Yes