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The experience of using the SEIQoL-DW with patients with advanced chronic obstructive pulmonary disease (COPD): issues of process and outcome

Abstract

Purpose

To report the experience of using the SEIQoL-DW for the measurement of quality of life with patients with advanced COPD and consider its feasibility, acceptability and appropriateness for a Phase III randomised controlled trial (RCT).

Methods

The SEIQoL-DW was administered according to its instructions within a Phase II RCT 3–5 times per patient, across 13 patients and the process audio-recorded. Quantitative and qualitative criteria were used to assess feasibility, acceptability and appropriateness. Qualitative analysis of the transcripts and fieldwork notes was conducted using Framework Analysis.

Results

The SEIQoL-DW steps (of identifying five quality of life cues, rating their functioning and importance) were completed at 48/51 interviews. However, some respondents were overwhelmed by the scripted introduction, experienced difficulty with cue identification, and focused only on certain types of cues (Step 1); some had difficulty interpreting and rating the concept of Step 2; and some had difficulty interpreting ‘importance’ and manipulating the SEIQoL-DW disc (Step 3).

Conclusions

Patients with advanced COPD were able to complete the SEIQoL-DW but analysis of its administration identified practical and conceptual concerns which question the validity of the results obtained. Suggestions for the development of the SEIQoL-DW and future feasibility studies are given.

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Notes

  1. SEIQoL-DW scripts reproduced with kind permission of Dr. Anne Hickey.

Abbreviations

SEIQoL-DW:

Schedule for the Evaluation of Individual Quality of Life-Direct Weighting

COPD:

Chronic obstructive pulmonary disease

IRF:

Interview Record Form

RCT:

Randomised controlled trial

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Acknowledgments

The authors would like to thank all participants who took the time to take part in and supported this study and this paper: the patients and carers, and BIS staff; Gail Ewing for locum interviewing; Stephanie Vo for timing the SEIQoL-DW administrations; palliative care administrative staff at Addenbrooke’s Hospital and King’s College London; the funders (Gatsby Charitable Trust and Cicely Saunders International (Phase II pilot RCT of BIS), Macmillan Cancer Support (MF)); Tariq Saleem, Cathy Shipman and Fliss Murtagh for early comments; and Isla Kuhn for help with literature searching (University of Cambridge Medical School Library).

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Correspondence to Morag Farquhar.

Appendix

Appendix

Step 1 script

“For each of us, happiness and satisfaction in life depends on those parts or areas of life which are important to us. When these important areas are present or are going well, we are generally happy but when they are absent or going badly we feel worried or unhappy. In other words, these important areas of life determine the quality of our lives. What is considered important varies from person to person. That which is most important to you may not be so important to me or to your husband/wife/children/parents/friends (mention 1 or 2)… and vice versa.

I am interested in knowing what the most important areas of your life are at the moment. Most of us don’t usually spend a lot of time thinking about these things. Indeed, we often only notice that certain things are important when something happens to change them. Sometimes it is easier to identify what is important by thinking about the areas of life that would (or do) cause us most concern when they are missing or are going badly.”

Step 2 script

“Now that you have named the five most important areas in your life, I am going to ask you to rate how each of these areas are for you at the moment. First I will show you an example of how the rating is done.”

“First look at this box (indicate). As you can see, there are spaces at the bottom in which I can write the five important areas of my life (indicate), and there is a scale along the left hand side (indicate). The scale ranges from ‘worst possible’ on the bottom to ‘best possible’ on the top, and passes through levels such as ‘very ad’—‘bad’—‘neither good nor bad’—‘good’ and ‘very good’ between the two extremes.

The first important area of my life is X (use a cue not already nominated by the respondent and write it in the first space at the bottom of the rating box) and if this is going well at the moment, I can show this by drawing a bar like this (draw a bar approx 80 mm high). I am using the scale (indicate) to decide how high my bar should be. The nearer I draw the bar to the bottom line, the poorer my rating of that area of my life and the nearer I draw it to the top line, the better my rating of that area of my life. A mark in the middle range would indicate that I am rating life as neither good nor bad, but somewhere in between”

[Interviewer continues doing sample ratings for the remaining sample cues]

“This provides a picture of life as I might think of it at the moment”

“Now I want you to rate the five most important areas of your life, as you see presented here (indicate). Firstly, draw a bar which represents how you would rate yourself on each of these areas at the moment. As in the example I’ve just shown you, the nearer you draw the bar to the bottom line, the poorer you are rating that area of your life and the nearer you draw it to the top line, the better your rating of that area of your life”

Step 3 script

“I would like you to show me how important the five areas of life you nominated are in relation to each other, by using this disk (indicate SEIQoL-DW)Footnote 1. People often value some areas in life as more important than others. This disk allows you to show me how important each area in your life is by giving the more important areas a larger area of the disk, and the less important areas a smaller area of the disk. In my life, for example, X (name a cue not already chosen by respondent) is about this important (manipulate disk so that X represents 30% of space available). X2, however, is less important than X, so I has only this much of the pie (X2 20%). X3, on the other hand, is more important than X so it has this much of the pie (X3 40%). Finally, X4 and X5 are the least important areas of life for me, and I value them about the same (X4 & X5 5% each).

Now thinking about the five areas of life you have mentioned I would like you to show me how important these areas are in relation to each other by moving the disks around until their relative size represents your view of their importance.”

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Farquhar, M., Ewing, G., Higginson, I.J. et al. The experience of using the SEIQoL-DW with patients with advanced chronic obstructive pulmonary disease (COPD): issues of process and outcome. Qual Life Res 19, 619–629 (2010). https://doi.org/10.1007/s11136-010-9631-7

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Keywords

  • Quality of life
  • Feasibility studies
  • Outcome assessment (health care)
  • Chronic obstructive pulmonary disease
  • Palliative care
  • Validity of results