Authors

1. Rittenmeyer, Leslie PsyD, RN, CNE
2. Huffman, Dolores PhD, RN
3. Moore, Ellen DNP, RN

Abstract

Review question/objective: This systematic review seeks to:

Identify and synthesize the best available international evidence on the experience of adults who choose watchful waiting or medical surveillance as an approach to medical treatment.

The specific purpose of this review is to systematically examine the scientific literature in order to identify the phenomenon of watchful waiting or medical surveillance as an approach to medical treatment. To this end the questions addressed in this review are:

1. How do patients who have chosen watchful waiting or medical surveillance describe the process of coming to the decision?

2. What were the factors that influenced their decision?

3. How do patients who have chosen watchful waiting or medical surveillance describe the experience?

Background: "Life was always a matter of waiting for the right time to act."1 "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.2-7 There is some confusion in the literature with regards to the definition of watchful waiting or active surveillance. Parker8 differentiates watchful waiting from active surveillance, stating that watchful waiting is an approach that follows patients until the cancer progresses to the point that palliative treatment is needed, whereas active surveillance is a proactive management approach with cure as the goal. More often than not though, the two terms are used interchangeably to mean an approach to treatment with cure as the goal. For the purposes of this review, watchful waiting will be used to label all instances wherein a choice was made to pursue this type of treatment approach.

Baily, Wallace and Mishel9 studied older men with a diagnosis of prostate cancer who had made a decision to choose watchful waiting as an alternative to more aggressive treatment. For some study participants, the selection of watchful waiting caused considerable distress, while others felt that because they did not feel ill, it allowed them to be in denial. Many recalled the emotional toll of living with the uncertainty. The feelings of uncertainty are best expressed by the words of the participants. "Well, it's always in the back of your head. Anytime I have like a groin pain, sure, you always wonder if it's something related to the prostate cancer."9^(p.737) "I'm not as happy as I was, by any means. I've always been a pretty happy-go lucky guy and I haven't been as happy and satisfied since I found this out. My immediate family called me grouchy and this and that[horizontal ellipsis]it's been on my mind a whole lot." 9^{(p. 738)} Wallace studied uncertainty, anxiety, and the way in which uncertainty is understood with a population of older men who had chosen watchful waiting as a treatment modality for prostate cancer.10 She found a significant relationship among uncertainty, anxiety and the perception of danger, suggesting that patients who choose watchful waiting need increased education, support and patient management both before and after the decision is made. Davison, Oliffe, Pikles and Mroz2 studied the factors influencing men undertaking watchful waiting for the management of low-risk prostate cancer. Using an empirical phenomenological research approach, they found the following as influencing the participants decision: the patients perception of his prostate cancer; the way in which the physician described the cancer to the patient; decision control; avoidance of side-effects of more aggressive treatment; seeking information; advice from family and friends; preexisting medical conditions; age; ability to cope with active surveillance. In 2002, Hedestig, Sandman, and Widmark11 explored the experience of living with untreated localized prostate cancer. Using a phenomenologic-hermeneutic approach, they found that the experience caused patients to feel uncertain, afraid and worried. "For me, it is something special to have cancer, the diagnosis frightens me."11^(p.57) In another qualitative study by Chapple, Ziebland, Herxheimer, Mcpherson, Sheppard and Miller,12 a sample of 50 men with a confirmed diagnosis of prostate cancer were interviewed in order to determine how they came to the decision to choose one treatment over another. The authors found that the men in the study who might have chosen watchful waiting as a treatment choice did not remember it being presented as a serious option. Most chose more aggressive treatments. The few who chose watchful waiting though reported finding doctors who supported their decision, had explored the evidence on the internet and were concerned about the serious side effects of more aggressive treatments. Most men in the study, whether they chose watchful waiting or active treatment, reported considerable pressure from family, doctors or support groups to seek active treatment over watchful waiting. Denberg, Melhado and Steiner13 interviewed 20 men with localized prostate cancer and found that patient preferences were not based on risk of various clinical outcomes but more on feelings of fear and uncertainty. Choices were greatly influenced by misconceptions, and the anecdotal experiences of others. "For men with localized prostate carcinoma, the treatment decision making process would benefit from interventions that moderate feelings of fear and a desire for rapid treatment, dispel common and powerful misconceptions about prostate cancer and its therapies, and help patients avoid over-reliance on anecdotes."13^(p.3) In another study, the rationales for choosing watchful waiting were identified and included: trust in their physicians ability to monitor; buying time without having to experience the more serious side-effects of treatment; waiting for better treatments; and perceiving their risk.14

Watchful waiting as a treatment choice in other contexts is also reported. Underhill and Dickerson studied women with a hereditary risk of breast cancer managing their risk through watchful waiting.3 The study findings indicate that hereditary risk for breast cancer and having to engage in watchful waiting often caused the participants to feel ill even though otherwise healthy. They described living with the "what ifs" of a cancer diagnosis and reported a need for accurate information, support and guidance from healthcare professionals. Evans, Ziebland and Pettitt5 studied watchful waiting as a treatment modality for chronic lymphocytic leukemia and implications for doctor-patient communication. They concluded that watchful waiting in the context of lymphocytic leukemia causes an array of stress responses that includes anxiety and depression. It is difficult for patients to come to terms with being ill but not ill and waiting to become ill. Patients need information, reassurance and psychological support throughout the watchful waiting period. In a study that looked at watchful waiting and quality of life in persons with small renal tumors, it was found that illness uncertainty affected several quality of life indicators such as intrusive thoughts and avoidance behaviors.7 The authors suggest that in order to improve quality of life, illness uncertainty be targeted with psychosocial interventions.7

There is ample evidence to suggest that the experience of watchful waiting as an approach to medical treatment should be a phenomenon of interest to healthcare practitioners. This review will synthesize the best available evidence in order to increase understanding of the phenomenon and make recommendations for practice. Although there is a systematic review from the Cochrane Collaboration on the subject of radical prostatectomy versus watchful waiting utilizing randomized or quasi-randomized controlled trials, a preliminary search of the Joanna Briggs Library, CINAHL and PubMed has revealed that there is currently not a systematic review, either published or unpublished addressing the experience of watchful waiting.