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JOURNAL ARTICLE
REVIEW

The experience of adults who choose watchful waiting or active surveillance as an approach to medical treatment: a qualitative systematic review

Leslie Rittenmeyer, Dolores Huffman, Michael Alagna, Ellen Moore
JBI Database of Systematic Reviews and Implementation Reports 2016, 14 (2): 174-255
27536798

BACKGROUND: "Watchful waiting" or "active surveillance" is an alternative approach in the medical management of certain diseases. Most often considered appropriate as an approach to treatment for low-risk prostate cancer, it is also found in the literature in breast cancer surveillance, urinary lithiasis, lymphocytic leukemia, depression and small renal tumors.

OBJECTIVES: This systematic review sought to:Identify and synthesize the best available international evidence on the experience of adults who choose watchful waiting or active surveillance as an approach to medical treatment. To this end the questions addressed in this review were:1. How do patients who have chosen watchful waiting or active surveillance describe the process of coming to the decision?2. What were the factors that influenced their decision to choose?3. How do patients who have chosen watchful waiting or active surveillance describe the experience?

INCLUSION CRITERIA: Male or female patients, 18 years or older, who experience the phenomenon of choosing or not choosing watchful waiting or active surveillance as a treatment approach.The phenomena of interest were accounts of the experiences of adult patients who choose watchful waiting or active surveillance as an approach to medical treatment.This review considered studies that focused on qualitative data including, but not limited to, designs such as phenomenology, grounded theory, ethnography, action research and critical theory. Mixed method studies with narrative description and patient voice were also considered. Grey literature such as research reports and dissertations were also included.

SEARCH STRATEGY: The search strategy aimed to find both published and unpublished studies through electronic databases, reference lists, and the World Wide Web. Extensive searches were undertaken of relevant databases to include CINAHL, PubMed, SCOPUS and PsycINFO. A three-step search strategy was used in each component of the review. Studies were limited to English language papers. The search considered papers from the year 2000 to January 2015.

METHODOLOGICAL QUALITY: Qualitative papers selected for retrieval were assessed by two independent reviewers for methodological validity prior to inclusion in the review using the standardized critical appraisal instruments from the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI). Any disagreements that arose between the reviewers were resolved through discussion, or with a third reviewer.

DATA EXTRACTION: Qualitative data were extracted from papers included in the review using the standardized data extraction tool from. The data extracted included specific details about the phenomena of interest that described the experiences pertinent to the review questions

DATA SYNTHESIS: The data were synthesized using the Joanna Briggs Institute approach to meta-synthesis by meta-aggregation using the JBI-QARI software and methods.

RESULTS: A total of 16 studies, critically appraised by two independent reviewers and deemed to be of high quality, were included in the final review. One study was excluded after appraisal. One hundred and fifty-five findings from the 16 studies were extracted into 10 categories and then into three synthesized findings. The synthesized findings explicated:

CONCLUSIONS: The synthesized findings of the review conclude that the process of making the decision to choose watchful waiting is complex. Through the process patients and their significant others experience an array of emotions that often lead to uncertainty and anxiety. Once the decision is made patients must cope with the knowledge that they have a troubling diagnosis and make the necessary adjustments. An empathic, reassuring relationship with a healthcare practitioner eases the burden of this process.Healthcare providers need to recognize that not all patients are "at peace" with the decision of choosing watchful waiting. Uncertainty and fear may intensify during this time as well as feelings of stress and anxiety. Patients and their significant others often attempt to adapt in the best way they know how but the effectiveness of their coping strategies needs to be assessed. In addition, healthcare providers need to also be aware that with the increased anxiety and stress associated with watchful waiting, patients' understanding of healthcare information and the ability to ask questions may be diminished. Both providers and patients benefit from open discussions related to the many aspects of uncertainty and fear related to making and living with the decision. Employing a shared decision making model with regard to the management of the array of issues that comes from both making the decision and living with it is recommended. It appears that patients are very sensitive to recognizing when the care they are receiving lacks empathy. Communication that is open, empathic, and non-judgmental is essential. A willingness to discuss sensitive issues such as sexual function needs to be conveyed. Lastly, providers and their staff need to remain attentive to the importance of articulating aspects of the situation that are hopeful and optimistic as many patients, during their visits, take their cues regarding their health status from non-verbal and verbal interactions.Future studies should investigate.

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