Elsevier

Epilepsy & Behavior

Volume 33, April 2014, Pages 144-151
Epilepsy & Behavior

Targeted Review
Common experiences of patients following suboptimal treatment outcomes: Implications for epilepsy surgery

https://doi.org/10.1016/j.yebeh.2014.02.018Get rights and content

Highlights

  • We review the literature on patient experiences of unsuccessful medical interventions.

  • Eight common experiences were identified across a range of interventions.

  • Two of these experiences were reported after unsuccessful epilepsy surgery.

  • Three additional factors also influenced patient perceptions of seizure recurrence.

  • Knowledge of patient experiences can improve care after epilepsy surgery.

Abstract

Few studies have investigated the patient experience of unsuccessful medical interventions, particularly in the epilepsy surgery field. The present review aimed to gain insight into the patient experience of seizure recurrence after epilepsy surgery by examining the broader literature dealing with suboptimal results after medical interventions (including epilepsy surgery). To capture the patient experience, the literature search focused on qualitative research of patients who had undergone medically unsuccessful interventions, published in English in scholarly journals. Twenty-two studies were found of patients experiencing a range of suboptimal outcomes, including seizure recurrence, cancer recurrence and progression, unsuccessful joint replacement, unsuccessful infertility treatment, organ transplant rejection, coronary bypass graft surgery, and unsuccessful weight-loss surgery. In order of frequency, the most common patient experiences included the following: altered social dynamics and stigma, unmet expectations, negative emotions, use of coping strategies, hope and optimism, perceived failure of the treating team, psychiatric symptoms, and control issues. There is support in the epilepsy surgery literature that unmet expectations and psychiatric symptoms are key issues for patients with seizure recurrence, while other common patient experiences have been implied but not systematically examined. Several epilepsy surgery specific factors influence patient perceptions of seizure recurrence, including the nature of postoperative seizures, the presence of postoperative complications, and the need for increased postoperative medications. Knowledge of common patient experiences can assist in the delivery of patient follow-up and rehabilitation services tailored to differing outcomes after epilepsy surgery.

Introduction

There has been a steadily growing body of research investigating the psychological and social impact of major medical interventions on the patient. Cay and colleagues noted that “a satisfactory result in the eyes of the surgeon may be regarded as failure by the patient. … by contrast, success to the patient does not necessarily mean absence of physical symptoms” [1], p. 30. This implies that there may be a discrepancy between patient perceptions and medical opinion regarding the success of an intervention. For instance, research into outcomes after epilepsy surgery has shown that despite being seizure-free, patients can experience suboptimal outcomes because of difficulties in adjusting to life without epilepsy and learning to be well [2], [3], [4], [5]. Very few studies, however, have explored the perceptions of patients after medically unsuccessful interventions. This is particularly apparent in the epilepsy surgery field where the experience of seizure recurrence has been relatively neglected [6].

Qualitative research provides a rich source of information about key issues spontaneously raised by patients and their families and offers a powerful method for understanding differences between medical and patient perspectives that are relevant to clinical practice. It also has the potential to inform future quantitative studies by fully documenting the nature and range of issues experienced by patients, thereby ensuring that the focus of future research is relevant and that the development of quantitative measures is sensitive to patient issues of greatest concern. However, while several qualitative studies have investigated patient experiences of seizure recurrence as part of larger studies (e.g., [2], [7]), to date, only one study has focused solely on patients with seizure recurrence [8]. We aimed to gain insight into the patient experience of seizure recurrence after epilepsy surgery by examining this study [8] as part of the broader literature dealing with suboptimal outcomes, including other (nonepilepsy) major interventions. Specifically, this review aimed to identify common themes reported by patients in the broader literature and discuss their relevance to seizure recurrence after epilepsy surgery. We also considered how this knowledge might be applied to improve clinical care and postoperative follow-up of patients epilepsy after surgery.

Section snippets

Methods

The present literature review was designed to be exploratory and, therefore, focused on qualitative research (including case studies), or articles that incorporated data from semistructured interviews in conjunction with quantitative measures (mixed method studies), to investigate patient perspectives on suboptimal treatment outcomes. The inclusion criteria were scholarly journal articles written in English that assessed adult human participants (i.e., aged 18 years or older) who had undergone

Data analysis

An iterative process was used to derive common patient experiences of suboptimal treatment outcomes from the 22 studies identified. First, each article was read carefully and annotated for (i) intervention-specific factors that were related specifically to a particular intervention and (ii) generic psychosocial factors that might apply to a range of medical interventions. For example, an intervention-specific factor for unsuccessful infertility treatment would be ‘an unfulfilled desire to have

Common patient experiences following suboptimal treatment outcomes

Table 2, Table 3 summarize the themes identified in the literature. Psychological themes included hope and optimism (both before and after treatment), unmet expectations subsequent to unsuccessful treatment, control-related issues, negative emotions and clinical psychiatric symptoms, and the use of coping strategies. Social themes included altered social dynamics and stigma as well as perceived failure on the part of the treating team to provide adequate information and psychological support.

Conclusions

In conclusion, the present review highlights the range of issues experienced by patients following a suboptimal treatment outcome and how these relate to our knowledge of the patient experience of seizure recurrence after epilepsy surgery. Based on these findings, it is apparent that psychosocial factors are crucial in evaluating patient outcomes as they can influence patient perceptions beyond the effect of medical factors alone. Greater knowledge of the patient's perspective can assist the

Conflict of interests

The authors have no conflicts of interest to declare.

Acknowledgments

The authors thank Jessie Armitage, Jade Patterson, Catherine Gasciogne, Eve Tan, and Kanil Fernando for providing feedback on earlier drafts of the manuscript.

  • 1.

    What are the common experiences described by patients following suboptimal treatment outcomes?

    Review of qualitative studies investigating the patient perspective after unsuccessful medical interventions revealed a number of common patient experiences. In order of frequency in the literature, these included the following:

    • Altered social

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