The CaP Uncertainty Research Project
("CURP")

Phase One Results:
Abstract

(Last Revision Date: 26 April 1998)

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© 1997 Dale R. Payment, RN, MSN, JD
Assistant Professor, Division of Nursing
Lewis-Clark State College, Lewiston, Idaho

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Well, data collection for the CaP Uncertainty Research Project: 1st Phase has ended. However, the input of hundreds of CaP survivors that use the Internet for information and support was analyzed and the abstracted results are available below.

The 2nd Phase of CURP is currently being planned and the intent is to make it more specific to the "lived experience" of CaP than the 1st Phase was. This page will be updated with new information as it becomes available.

I would like to take this opportunity to thank all the men who participated in this study--without their time and input this investigation would have never been successful.

Sincerely,

Dale

The 1st phase of CURP was a descriptive, correlational study exploring the perception of uncertainty among a sample of men diagnosed with prostate cancer (CaP) and recruited from the World Wide Web (WWW). It was conducted at the University of New Mexico during the first half of 1997.

Uncertainty describes a cognitive perception (i.e., "an intellectually triggered feeling") that results when a person is unable to attach meaning or significance to an illness-related event that is being experienced. The illness-related event may be

• a diagnostic test or procedure that the person has never experienced;
• being told he or she has AIDS, diabetes, hypertension, cancer, etc.;
• experiencing new and unfamiliar symptoms of a disease (e.g., bone pain with metastatic cancer);
• receiving complex treatments for an illness (e.g., radical prostatectomy, radiotherapy, etc.);
• being told his serum PSA is suddenly rising.

When a person cannot attach personal meaning to an event, the event is perceived as ambiguous and the person is unable to predict the consequences that are likely to arise from the event. It is likely the inability to predict the personal consequences of a complex or novel event will be interpreted as a "threat" and a physiologic stress response ("fight or flight") will be triggered.

Numerous studies have shown the stress response (if prolonged or intense) decreases the immune function in humans. It has been suggested that cancer proliferates and metastasizes more readily when the immune function of a host is compromised. Thus, if a person perceives uncertainty in an illness-related event, a stress response may be elicited and the person's immune function may be compromised, potentially facilitating the growth and spread of cancer.

It follows that if the perception of uncertainty can be decreased, the strength of an associated stress response is lessened and the immune system of the host can function more effectively, which might better control the growth and spread of the host's cancer.

Before reliable interventions for decreasing uncertainty in illness can be designed and tested, the dimensions of perceived uncertainty in various illnesses have to be assessed and evaluated. Therefore, the purpose of the 1st phase of CURP was to explore:

1. the prevalence and level of perceived uncertainty among a sample of men diagnosed with, and treated for, CaP;
2. whether a significant relationship exists between a participant's choice of a particular treatment and his perceived uncertainty level;
3. whether the mean (i.e., average) perceived uncertainty level of each specific CaP treatment group differs significantly from the other distinct treatment groups; and
4. whether a participant's perception of the aggressiveness of his treatment was related with his perceived uncertainty level.

Participants (N = 310) completed a personal information form and the Mishel Uncertainty in Illness-Community Form (MUIS-C) placed on a data collection website. The MUIS-C is a 23-item, Likert-type scale which addresses different parameters of uncertainty in the illness experience. It is specifically designed to measure feelings of uncertainty in chronically ill patients who are not hospitalized and not likely to be experiencing active medical treatment. The MUIS-C has been shown to be a valid and reliable tool in measuring uncertainty in its targeted population.

Results

After recruitment announcements were posted to various CaP-associated listservs, the data collection website was activated and remained operational from 15 April 1997 through 27 May 1997 (6 weeks). A total of 351 data submissions were received. After cleansing the data of incomplete submissions, participants who were diagnosed but not yet treated, and patently inaccurate submissions, the total sample numbered 310 men. The majority of men were:

• Caucasian (96%),
• 50 years or older (94%),
• married (86%), with
• 16 or more years of education (71%).

Forms of CaP Treatment

Fifty-six percent of the men reported receiving only 1 form of CaP treatment, with the remainder (44%) receiving 2 or more. Among the total sample of 310 men, 494 different episodes of treatment were reported (since some men received 2 or more treatments, e.g., radical prostectomy followed by external beam radiotherapy, etc.). Combined hormonal blockade (CHB) was the most frequently reported treatment (32%), followed by:

• radical prostatectomy (28%),
• external beam radiotherapy (19%),
• brachytherapy (10%),
• watchful waiting (6%),
• cryosurgery (3%), and
• orchiectomy [surgical castration] (2%

Perceived Uncertainty

The mean level of perceived uncertainty among the sample was moderate (MUIS-C M = 54.27, SD = 14.62) when compared to standardized normative data from other medical conditions (e.g., epilepsy, multiple sclerosis, heart disease, etc.).

• Treatment-Related Uncertainty
  A chi-square (X²) test for independence was done to examine if relationships between treatment choice and perceived uncertainty levels existed. To avoid the confounding influence of MULTIPLE treatments on perceived uncertainty levels, the chi-square analysis was performed on a subsample of men who received only a SINGLE initial form of treatment (n = 173).
  
  1. Participants who exclusively selected watchful waitingwere most likely to perceive mid-levels of uncertainty (X² = 9.19, p = .002).
  2. Participants who selected CHB as their only therapy were more likely to report higher levels of perceived uncertainty (X² = 3.85, p= .049).
  3. Men who had radical prostatectomy were significantly more likely to perceive low levels of uncertainty (X² = 13.52, p< .001).

  
  Uncertainty Differences Among Single Treatment Groups
  A one-way ANOVA (F [5, 303] = 3.20, p= .008) and Scheffe post-hoc analysis (F [5, 303] = 3.35, p= .049) revealed that men who received radical prostatectomy as their single, initial CaP treatment had a significantly lower level of perceived uncertainty than men who initially chose CHB.

  Perceived Aggressiveness and Treatment Choice
  A Pearson's product moment correlation analysis was performed on the complete sample (N = 310) to determine if there was a relationship between:

  • how strongly a participant felt each of his treatments had eliminated his CaP and
  • the level of uncertainty he perceived.

  Table 1. Relationship between the Treatment Received and the Perceived Aggressiveness of that Treatment.

  	Perceived Aggressiveness of Treatment
  	RP	EBRT	CRYO	BRACHY	CHB	ORCHI	WW
  Uncertainty Level (MUIS-C)	-.12	-.19	-.72**	-.18	-.27**	-.03	.21

  Note. RP = Radical Prostectomy. EBRT = External Beam RadioTherapy. CRYO = Cryosurgery. BRACHY = Brachytherapy. CHB = Combined Hormonal Blockade. ORCHI = Orchiectomy. WW = Watchful Waiting. ** = Significance level <.01.

  The results of this analysis revealed that cryosurgery and combined hormonal blockade were the only treatments significantly related to a survivor's perception of uncertainty and this relationship was a negative one. However, the existence of near-universal negative values across the range of treatments suggest that the stronger a CaP survivor feels a treatment has eliminated his CaP--the less uncertainty he will perceive.

  Other Points

  • Orchiectomy exhibits an extremely weak relationship with uncertainty level (almost non-existent).
  • Watchful waiting was the only treatment having a positive relationship with perceived uncertainty (although weak and not significant), implying that this treatment differs from the other CaP treatments in the way it influences a CaP survivor's level of uncertainty.
  • These results need to be interpreted with caution because the confounding influence of multiple therapies was not controlled.