Targeted ReviewCommon experiences of patients following suboptimal treatment outcomes: Implications for 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. 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
References (50)
- et al.
Patient's assessment of the result of surgery for peptic ulcer
Lancet
(1975) - et al.
Paradoxical results in the cure of chronic illness: the “burden of normality” as exemplified following seizure surgery
Epilepsy Behav
(2004) - et al.
Current challenges in the practice of epilepsy surgery
Epilepsy Behav
(2011) - et al.
Outcome assessment in seizure surgery: the role of postoperative adjustment
J Clin Neurosci
(1999) - et al.
The experience of seizures after epilepsy surgery
Epilepsy Behav
(2009) - et al.
Long-term follow-up of women and men after unsuccessful IVF
Reprod Biomed Online
(2005) - et al.
Striving for normalcy: symptoms and the threat of rejection after lung transplantation
Soc Sci Med
(2004) - et al.
Patients' explanations for unsuccessful weight loss after laparoscopic adjustable gastric banding (LAGB)
Patient Educ Couns
(2009) - et al.
Outcome of temporal lobectomy: expectations and the prediction of perceived success
Epilepsy Res
(1999) Expectations and life changes associated with surgery for intractable epilepsy
J Epilepsy
(1998)
Psychosocial function following temporal lobectomy: influence of seizure control and learned helplessness
Seizure
Epilepsy surgery: patient-perceived long-term costs and benefits
Epilepsy Behav
Psychosocial difficulties and outcome after temporal lobectomy
Epilepsia
The “burden of normality”: concepts of adjustment after surgery for seizures
J Neurol Neurosurg Psychiatry
The burden of normality: a framework for rehabilitation after epilepsy surgery
Epilepsia
Cancer recurrence as a traumatic event
Behav Med
Cancer recurrence: personal meaning, communication, and marital adjustment
Cancer Nurs
Psychological reactions to progression of metastatic breast cancer — an interview study
Cancer Nurs
The hip and knee replacement operation: an extensive life event
Scand J Caring Sci
When IVF treatment fails
J Neurol Neurosurg Psychiatry
In pursuit of motherhood: the IVF experience
Contemp Nurse
Transforming hope: the lived experience of infertile women who terminated treatment after in vitro fertilization failure
J Nurs Res
Unresolved grief in women and men in Sweden three years after undergoing unsuccessful in vitro fertilization treatment
Acta Obstet Gynecol Scand
Picking up the pieces: the unsuccessful kidney transplant
Health Soc Work
The kidney transplant failure experience: a longitudinal case study
Prog Transplant
Cited by (8)
Would people living with epilepsy benefit from palliative care?
2021, Epilepsy and BehaviorCitation Excerpt :There are few references dealing with the psychosocial aspects, patient perceptions, and coping related to surgical failure. The available studies point out that recurrent seizures are often, not surprisingly, a trigger for negative emotions because of unmet expectations, and psychiatric symptoms (depression and anxiety) that require coping strategies [145,146]. Adjustment to postoperative seizure recurrence includes adapting to loss of independence and control, and has psychosocial effects that may merit ongoing psychosocial support or counseling.
Effects of a brief psychotherapeutic intervention on resilience and behavior in patients with drug-resistant mesial temporal lobe epilepsy and late seizure recurrence after surgery
2019, Epilepsy and BehaviorCitation Excerpt :Studies have observed that SR may occur in up to 30–50% of patients who underwent CAH during long-term follow-up, with negative consequences [19–22]. The occurrence of SR has been considered a serious adverse event that can compromise patients' medical treatment and QOL [23,24]. Based on these findings, the negative emotional impacts on patients with late SR would therefore be even higher, since they have experienced a seizure-free period of at least six months [23,24].
Parents’ experiences managing their child's complicated postoperative recovery
2018, International Journal of Pediatric OtorhinolaryngologyCitation Excerpt :Managing postoperative care at home may become even more challenging for parents if their child experiences a complication or unexpected outcome. Previous research focusing on suboptimal medical outcomes has largely been conducted with adult patients [11–13]. In pediatrics, parents act as decision makers and caregivers, and therefore it is important to focus on parents' experiences of managing their child's complex postoperative recovery, so healthcare providers can better understand and attend to unique patient/parent needs.
Qualitative research and its methods in epilepsy: Contributing to an understanding of patients' lived experiences of the disease
2015, Epilepsy and BehaviorCitation Excerpt :Some of this research also introduced cognitive–behavioral strategies and other extended engagement approaches to link interventions with need-based assessment. The literature reveals a rich vein of information regarding qualitative research that has identified the characteristics of genetic generalized epilepsies [27], patient symptomatology [14], the effects of epilepsy treatments on patients' health-related QoL [16], and issues surrounding clinical efficacy, absence of physical symptoms, seizure reduction, and seizure freedom [17,28]. However, two areas appear to need qualitative investigation.
Women's experiences with flap failure after autologous breast reconstruction: A qualitative analysis
2017, Annals of Plastic Surgery