A new landscape in illness uncertainty: A systematic review and thematic synthesis of the experience of uncertainty in patients with advanced cancer receiving immunotherapy or targeted therapy

Abstract

Objective Over the past 20 years, immunotherapy and targeted therapy (TT) have been extending the life expectancy and providing hope for a growing number of patients with advanced and metastatic cancer. However, the efficacy, side effects, and overall prognosis of these treatments are highly unpredictable. Recent research suggests that these patients may be experiencing significant uncertainty which impacts their functioning. This study reviewed the literature on the experiences of uncertainty for individuals with advanced or metastatic cancer patients who are receiving immunotherapy or TT. Method A systematic literature review was conducted. Data was extracted from studies by pairs of reviewers. Literature quality was appraised using the Critical Appraisal Skills Program checklist. Following data extraction, thematic synthesis was used to summarize findings across studies and generate overarching themes. Results Fifteen qualitative studies were included. Findings highlighted impacts of various sources of uncertainty (financial, emotional, social), unmet needs related to uncertainty (practical, informational, communication), and recommendations for the management of uncertainty. Clinical implications and study limitations were indicated. Conclusions Findings were situated within Mishel's Uncertainty in Illness Theory and the literature on supportive care for advanced cancer populations. Recommendations related to improving healthcare provider communication and balancing hope and expectations for treatment outcomes were highlighted. Further research is needed to investigate experiences of uncertainty in this population. Tailored interventions for uncertainty may be warranted.

Attitudes, expectations, and lived experiences of cancer patients receiving dendritic cell vaccine therapy in Japan

“…In addition to negative emotional responses to prognosis and possible treatments, participants reported difficulties and concerns about the financial and social challenges involved in seeking immunotherapy treatment. For example, similar to the immunotherapy patients in the studies reported by Levy et al 29 and Langmuir et al 31 several of our participants experienced problems with family relationships in negotiating their treatment decisions. These ranged from disagreement about the effectiveness of non-standard treatments to a focus by family members on prolonging life rather than on quality of life, an issue also reported by immunotherapy patients in a qualitative study by Cappelli et al.…”

“…Participants’ feelings and experiences in this transitional stage, which is characterized by both hope and fear for the future, were similar to those reported by cancer patients in previous qualitative studies. 31 , 36 …”

“…For example, cancer patients receiving immune checkpoint inhibitor therapy experience uncertainty about the novel therapy and about their disease trajectory, 29 as well as feelings of hope and faith in the treatment. 30 Langmuir et al 31 conducted a systematic review and thematic synthesis of experiences of uncertainty in advanced cancer patients receiving immunotherapy. They identified different emotional, financial, and social sources of uncertainty and pointed out the importance of strategies to manage uncertainty in immunotherapy patients.…”

What patients with advanced cancer experience as helpful in navigating their life with a long-term response: a qualitative study

“…A framework that may provide further insight into the duality LTRs experience is the Dual Process Model of Coping with Bereavement (DPM). This seems relevant as many LTRs are grieving their former self and the life they envisioned [1,7,11,13,23]. The DPM describes the grieving process as a pendulum swing, alternating between being loss-oriented (i.e., coping with the loss experience itself and processing it) and restoration-oriented (i.e., coping with the changes brought about by the loss) [24].…”

“…Despite growing awareness and understanding of LTRs' experiences [1,[7][8][9][10][11][12][13], there is a great need for further research on how to best support them navigating their life with a long-term response [14,15]. A valuable starting point is to learn from LTRs themselves, exploring the strategies they employ and what they experience as helpful in dealing with the challenges that come with a long-term response.…”