Patient Satisfaction with epilepsy surgery: What is important to patients?

This week I read a paper titled: “Patient satisfaction with epilepsy surgery: what is important to patients?” by Meaghan Lunney et al. (2018).

This work identified factors that are relevant to patient satisfaction with therapeutic epilepsy surgery (which is a specific treatment), and not the overall process of their care, such as staff attentiveness, etc.

Another important thing to note is the involvement of patients in the development of the tool that will be used to assess their satisfaction of epilepsy surgery. This enhances content validity and relevance.

Now, let us take a deep dive into a review of this informative paper.

Preamble

The authors noted that the satisfaction of a patient with treatment shows how well a patient is satisfied with the outcome of a specific treatment rather than the overall satisfaction with their care experiences.

According to Malmgren et al. (1997), the satisfaction of a patient with treatment have been found to be associated with some important factors like quality of life, etc.

Although, there are scales that measure patient satisfaction with medication; however, due to the aim of the authors to focus on treatment from surgeries, there needs to be development of instruments (scales/questionnaires) that measure patient satisfaction in that regard.

Therefore, the development of a tool that is specific to epilepsy surgery may be most appropriate to measure patient satisfaction. In addition, a review of patient satisfaction with types of epilepsy surgery revealed that tools are usually developed without patients involvement.

Hence, the aim of the study was to “systematically obtain patient-identified factors related to satisfaction with epilepsy surgery as a means of informing clinicians about the ways that patients evaluate outcomes of their treatment and as a conceptual basis for the future development of epilepsy surgery patient satisfaction scales”.

I have just showed a high level overview of what this paper is about. Let us take a deep dive to explore the method, materials, and results from this paper. I can assure you that it will be educative.

Methods & Materials

The authors used a staged, systematic approach to derive items that are important for patients satisfaction with epilepsy surgery as shown in figure 1 below.

In addition, I will like to outline the steps that the authors took as seen in figure 1 above. The authors:

  • Performed a systematic review of patient satisfaction with epilepsy surgery — this guided the scope and methods of the study.
  • Selected the Multiple Cause Indicator model as a conceptual framework for generating items.
  • Conducted focus group discussions with past epilepsy surgery patients to identify themes that are relevant to treatment satisfaction.
  • Developed questionnaires items based on the identified themes
  • Used a consensus methodology (the Delphi technique) with experts to evaluate and refine questionnaire items.
  • Had another session with a subset of the focus group to get feedback to ensure that the items were relevant and clear; and
  • Performed a second round of Delphi evaluation to select 31 items.

I believe the approach is clear and concise. Now, let us briefly consider some of the “key matters” in this approach before we see the results.

Who are the focus groups?

“The focus group participants were recruited from outpatient clinics in the Calgary Comprehensive Epilepsy Program in Calgary, Alberta, Canada, from December 2014 to February 2015.”

The authors drew a convenience sample of patients who were 18 years and above as at the time of their resective or disconnective epilepsy surgery from the database. Also, the authors included patients who could provide consent and were fluent in English and excluded patients who solely underwent diagnostic surgical procedures.

A convenience sample is a type of non-probability sampling method where the sample is taken from a group of people easy to contact or to reach. For example, standing at a mall or a grocery store and asking people to answer questions would be an example of a convenience sample. This type of sampling is also known as grab sampling or availability sampling. There are no other criteria to the sampling method except that people be available and willing to participate. In addition, this type of sampling method does not require that a simple random sample is generated, since the only criteria is whether the participants agree to participate.

Source: https://en.wikipedia.org/wiki/Convenience_sampling

There were two focus groups in which discussions with participants were exploratory, inductive, and content-driven using eight open-ended questions as seen in table 1.

The focus group discussions helped to identify themes related to patient
satisfaction. Then, based on the themes identified in the focus group discussions, items were generated by the research team.

Delphi Evaluation (Round 1)

The authors selected experts based on their expertise in epilepsy, neurosurgery, health services research, and scale design. In all, the Delphi panel consisted of 13 experts. The first draft had 55 items and response options were circulated to experts for feedback to reduce the number of items on the questionnaire, to ensure that each item was relevant and that all domains were covered adequately.

The authors phrased items as questions and Delphi participants were asked to rate each item using a 5-point Likert type scale in terms of clarity (1=not clear and 5=very clear). In addition, items were rated on a 5-point scale in terms of relevance (1=not relevant and 5=highly relevant).

As a measure, the authors had a threshold for eliminating item. A median relevance score of less than three was the cut-off for eliminating items and a median clarity score less than four was the cut-off for rephrasing items to improve clarity.

Finally, free text comments were also collected from all Delphi participants (experts). This helped to guide the revision of the items with respect to phrasing or addition of items.

Member checking with focus group participants

In order to deal with items ambiguity and comprehensible to the target population, the authors had to select a subset (n=7) of the initial focus groups to evaluate each item in the revised questionnaire for relevance/importance and clarity, using the initial 5-point scale for relevance and clarity. Items rated as “not at all important” by the majority were eliminated. Items were rephrased if more than one participant rated it as “not at all clear”.

In the second round of the Delphi evaluation, seven experts from the 13 in Round 1 were invited for a final assessment of item importance using a similar Delphi technique. Experts were asked to identify redundant items that
could be eliminated.

Great! Let’s see some of the interesting results from the paper.

Results

Focus groups

Table 2 below presents the characteristics of focus group participants. Group 1 had six participants of whom 50% were males. The second group contained three participants of whom one was male. The discussion sessions lasted two hours and 1.5 hours, respectively.

After analysis on the transcripts from the discussions, 12 unique themes were identified. An initial set of 55 items was agreed upon by scale design experts, to ensure that all themes were adequately captured.

Delphi evaluation (Round 1)

Of the 55 items, 34 had a median relevance rating of 5, eight had a rating of 4.5, five had a rating of 4, five had a rating of 3.5, and three had a rating of 3.

With respect to clarity, one item had a median rating of 5 and eight had a rating of 4.5. The majority (n=43) had a rating of 4. Two had a rating of 3.5 and one had a rating of 3 and was modified. No items had a clarity rating less than 3. The open-ended comments helped modify items to improve clarity.

Twelve items were removed from the initial 55-item questionnaire due to redundancy or poor clarity. The second draft consisted of 43 (55-12) items, covering all themes and included global questions related to expectations of surgery, quality of life, and overall satisfaction with epilepsy surgery.

Member-checking with focus group participants

Out of the seven selected subset from the initial focus groups, four returned responses. Of the 43 items, none were rated as “not at all important” by the majority and thus none were eliminated. One item was rated as “not at all clear” by more than one participant. Therefore, this single item was rephrased to improve clarity.

Delphi evaluation (Round 2)

The seven experts that were selected for the second Delphi evaluation agreed and reduced the 43-item list to 31 items as seen in table 3 below.

Content validity of the 31-item list was maintained as each item addressed at least one of the themes, and all themes were covered by at least one item as seen in table 4 below. Lastly, the readability of the 31 items was assessed using the Flesch-Kincaid readability test and matched a Grade 11 level.

Link to Paper

You can read the full paper here.

Discussion & Limitations

I believe you have learnt one or two things from this review. However, I will like to emphasize some key issues from the paper.

The authors used a systematic approach and standard methodology, to list out aspects that are important to patients when assessing satisfaction with epilepsy surgery. This list consisted of 31 specific items from 12 unique themes. Adverse effects of surgery, medical care or postsurgery rehabilitation, and seizure control were the most frequently endorsed themes.

One very important note is that the authors considered factors relevant to patient satisfaction with therapeutic epilepsy surgery (treatment), and not satisfaction with the process of care. The findings of the study aligned with results of the systematic review of predictors of patient satisfaction with epilepsy surgery (Macrodimitris et al., 2011).

Furthermore, one focal point from this paper is the involvement of patients in the design of the items using the patient focus group discussions and two rounds of the Delphi technique. This is in contrast to the majority of published studies on patient satisfaction with treatment in which information was collected from patients using predefined questionnaires developed by the research team.

Although, this study has numerous strengths, the authors identified some limitations and how these limitations were dealt with. Let me highlight some of these limitations:

  1. Selection bias since it is possible that patients chose to participate because they were either extremely satisfied or extremely dissatisfied with their surgery.
  2. Seven of the nine patients were seizure-free at the time of the interview, which may under-represent patients with seizure relapse and could have skewed responses toward satisfaction with surgery.

Conclusion

In summary, thematic analysis revealed 12 patient centred themes important for measuring patient satisfaction with epilepsy surgery. “This work can inform
both clinical care in epilepsy surgery and future studies designed to assess patient-reported outcomes in epilepsy surgery.”

Also, based on the findings of this paper, a better understanding of what is important to patients may guide physicians when communicating with patients and making decisions around treatment options.

I believe this was a great read. Please give this a clap. Share this if you deem it fit. See it next time!

References

  • Malmgren K, Sullivan M, Ekstedt G, Kullberg G, Kumlien E. Health-related quality of life after epilepsy surgery: a Swedish multicenter study. Epilepsia 1997; 38: 830–8.
  • Macrodimitris S, Sherman EMS, Williams TS, Bigras C, Wiebe S. Measuring patient satisfaction following epilepsy surgery. Epilepsia 2011; 52: 1409–17.

Guided Project Instructor at Coursera Inc.