lems, pain, general health perceptions, emotional wellbeing, role limitations caused by emotional problems, social functioning, and energy/vitality. The internal consistency of subscales ranged from α=.80-.90 in the present sample. All scale scores were transformed linearly to a 0 (worst health) to 100 (best health) range. Missing data were handled ac- cording to the scoring manual that recommends use of mean substitution for handling of missing data [31]. If more than >50% of the items were missing on a subscale the sub- scale score was not computed and was regarded as missing. The RAND-36 has sufficient psychometric properties whereby the alpha values for the subscales vary between .71 to .92 and for the test-retest reliability between .58 to .82 over a 2 month period [30,31].
statistics
SPSSv20 was used to analyze the data. Descriptive statistics are provided as a frequency breakdown of categorical variables and medians (or means) with dispersion statistics for continuous variables. Unless otherwise specified, all analyses were tested at ≤ 0.05 level of significance. Mean levels of FCR were computed for partners and survivors and compared with T-tests. Associations between survivors’ and partners’ mean CWS scores were explored using Pearson’s correlation. For all subsequent analyses the CWS cut-off score was used to group partners according to low or high FCR (low: ≤ 13; high ≥ 14). Chi-square tests were used to assess differences in proportions of high FCR between partners and survivors. A multiple linear regression analysis (enter method) of age at survey, partner (yes/no), cancer history (yes/no), education (dummy-coded with lower education as the referent), children (yes/no), time since diagnosis, treatment modality and survivors’ CWS score on partner FCR was conducted. Differences in HRQoL between partners with low vs. high FCR were compared with MANOVA.
ResUlTs
Participant characteristics
Demographics and clinical characteristics of partners and PCa survivors are shown in table 1. A total of 168 partners of PCa survivors participated. Partners had a median age at survey of 67.4 years (range 40 - 86) and PCa survivors 70.1 years (range 54 - 89). Survivors were on average 7.5 years post-diagnosis (range 0.9 - 20 years). Couples had been together an average of 43 years (range 8-57). Twenty-two partners (13%) reported being diagnosed with cancer in the past (mostly breast cancer 41%).
Table 1. Demographics (n=168 partner-patient dyads). Partners (n=168) n (%) PCa survivors (n=168) n (%) Age at survey Median (range) 67.4 (40–86) 70.1 (54-89) education Lower Secondary Tertiary 94 (56%) 46 (27%) 28 (17%) 35 (24%) 40 (27%) 70 (48%) Children Yes No 155 (92%) 14 (8%) 151 (94%) 9 (6%) Years a couple
Median (range) 43.0 (8-57) n.a.
History of cancer Yes No 22 (13%) 147 (87%) 174 (100%) n.a.
Time since diagnosis (years)
Median (range) n.a. 7.5 (0.9-20.0)
Time since surgery (Years)
Median (range) n.a. 5.9 (0.8 -19.2)
Treatment modality Surgery only Surgery + RT n.a. n.a. 126 (75%) 41 (25%)
Nb. RT = radiotherapy ; n.a. = not applicable.
The prevalence of high fCR in partners and PCa survivors
Partners’ mean rating of FCR was 12.6 (SD = 3.5), which is similar to mean levels of FCR reported by PCa survivors (M = 12.0 (SD = 3.8), t = -1.465, p = 0.144, 95% CI [-1.366 to 0.200]). A significant moderate positive correlation was found between partners’ and survivors’ mean levels of FCR (r = .44, p <.001).
When using a CWS cutoff score of ≥13 for PCa survivors and the more conservative female breast cancer survivor cutoff score of ≥14 for partners, no significant difference
in the percentage of high fearful survivors (38%) or partners (35%) was found (χ2(1, n
= 326) = 0.372, p = 0.542). Fifty-seven of the high fearful partners, compared to 28% of
the low fearful partners, were in a relationship with a high fearful PCa survivor (χ2(1, n =
168) = 13.084, p <.001). Twenty-one percent of the couples consisted of both a survivor and partner with high FCR. Further exploratory analysis using the same cut-off for both (CWS ≥13) found significantly more partners reported high FCR (49% partners vs. 38% survivors, p = 0.03).
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Demographic and clinical associates of high fCR (CWs≥14) in partners
The overall model for regression was significant (p <.001), and explained 21% (R2) of
partner FCR. Only higher survivor FCR (β 0.310; p <.001) and younger age of the partner (β -0.304; p =.008) were significantly associated with higher FCR in partners (Table 2).
Table 2. Regression analysis of factors associated with partner FCR (n=159)
variable b se(b) β t sig (p)
Partner variables:
Age at survey -0.129 0.048 -0.295 -2.706 0.008*
Years a couple 0.045 0.033 0.140 1.368 0.173
Cancer history (yes/no) 0.220 0.729 0.022 0.302 0.763 Education secondary vs. lower -0.749 0.600 -0.096 -1.249 0.214 Education tertiary vs. lower -1.212 0.714 -0.134 -1.698 0.092 Children (yes/no) -0.465 1.032 -0.037 -0.450 0.653
Survivor variables:
Time since diagnosis 0.043 0.060 0.064 0.719 0.477
Treatment modality 0.827 0.594 0.106 1.392 0.166
CWS score survivor 0.301 0.075 0.304 3.986 <0.001**
R2 0.21
f 4.324 p < 0.001
Δ R2 0.159
nb. CWS = Cancer Worry Scale * p < 0.05
** p < 0.001
HRQol correlates of fCR in partners
Compared to partners with low FCR, partners with high FCR (CWS ≥14) scored signifi- cantly worse on social functioning, emotional role functioning, mental health, vitality and general health (Table 3). Compared to scores of a normative female population partners with high FCR reported significantly worse social functioning and general health (both p < 0.05).
Table 3. Health-related quality of life in partners with high FCR vs. partners with low FCR and a normative population. low fCR (n = 103) High fCR (n = 53) normative sampleα
sf-36 domains Mean (sD) Mean (sD) p Mean (sD) p
Physical Functioning 81.8 (18.9) 76.7 (24.8) 0.151 80.7 (23.6) 0.260 Social Functioning 88.5 (16.8) 77.6 (19.1) <0.001** 86.1 (20.9) 0.003**
Physical Role Functioning 75.7 (37.3) 71.7 (38.6) 0.529 78.3 (36.5) 0.207 Emotional Role Functioning 88.4 (27.9) 76.1 (37.8) 0.023* 82.5 (33.5) 0.185 Mental Health 82.0 (12.0) 74.0 (13.5) <0.001** 75.5 (18.9) 0.571 Vitality 71.8 (14.5) 66.4 (16.8) 0.038* 66.3 (19.6) 0.971 Pain 84.2 (19.7) 81.4 (21.8) 0.428 80.0 (25.4) 0.696 General Health 70.0 (17.0) 63.9 (20.1) 0.042* 71.5 (21.8) 0.014* * p < 0.05 ** p < 0.001
α Normative sample, Dutch female general population (n=691); RAND-36 manual (Van der Zee, 1992).
DIsCUssIon
This study demonstrated that FCR is not restricted to cancer survivors but affects part- ners as well. Amongst partners, who were on average 7.5 years post-survivor diagnosis, approximately one third (35%) scored above the non-validated cut-off for high FCR.
Using the conservative CWS cut-off score to define high FCR, the proportion of high fearful partners in current study is lower than reported by Zimmermann et al., (2011) where 51% of partners of PCa survivors (n=24) scored above the cut-off for clinical fear of progression [16]. Reasons for differences in percentages of high FCR could be that the studies differed in respect certain partner characteristics, for instance, our sample did not include partners of survivors who had experienced a recurrence. Also, different questionnaires were used and the sample by Zimmermann et al., (2011) was relatively small which makes it hard to generalize their findings. Our finding that even 7.5 years after diagnosis a number of partners continue to experience high FCR is concerning and indicates that FCR is not restricted to the period around disease and treatment. The Dutch prostate cancer guideline advises semi-annual or annual hospital follow-ups up to 5 years post diagnosis [32]. This, together with the fact that partners do not always join the patient during medical consultations, makes high FCR in partners a problem that can remain undetected, especially in the period beyond 5 years post-diagnosis.
Partners reported a mean CWS score of 12.6. As there is no comparison data available of healthy persons or partners of cancer survivors we compared it with the mean CWS score (12.4) found amongst family members of patients with Lynch Syndrome (HNPCC) and found no significant difference [26]. In accordance with previous studies and our hy-
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