1 2 3 4 6 7 8 9 10 11 12 13 14 15 16 15 16 17 18 19 20 21 23 23 22 24 22 25 26 27 29 30 31 16 15 negative positive Thus, the first aim of this study was to examine if patients and partners hold similar views about HD. Our second aim was to compare the relationship patterns between patients’ and partners’ own illness perceptions and QoL. The third aim was to contribute to the understanding of the cognitive factors related to QoL in couples dealing with HD, by examining which spousal illness beliefs are important in both patients’ and partners’ quality of life. Method Sample and procedure n n n n Measures Demographic variables Unified Huntington Disease Rating Scale 32 Mini-Mental State 33 33 The Illness Perception Questionnaire 34 35 36 For the remaining scales, patients and their partners were asked to indicate whether they agreed with statements on a five-point scale, ranging from “strongly agree” to “strongly disagree”. The “Timeline” scale contained two statements about the perceived duration of the disease, with high scores indicating strong beliefs in a chronic long-term disease. Cronbach’s alpha for patients and partners was 0.45 and 0.72, respectively. “Consequences” consisted of five items assessing beliefs about the impact of HD on everyday life. High scores indicate stronger beliefs in serious consequences of the disease. Cronbach’s alpha for patients and partners was 0.69 and 0.61, respectively. High scores on the “Cure” scale (two items) indicate strong beliefs in the effectiveness of treatment. Cronbach’s alpha for patients and partners was 0.77 and 0.66, respectively. “Control” contained two items pertaining to the degree to which patients and partners believe they have the ability to influence the course of illness. Cronbach’s alpha for patients and partners was 0.85 and 0.83, respectively. The weight of all the items per scale were summed, and divided by the number of items, with the exception of those of the “Cause” subscale. Each item in this subscale was considered individually because each causal item represents a specific causal belief. The Medical Outcome Study 36-item Short Form Health Survey 37 Analysis plan t t To assess whether spousal illness perceptions are related to patients’ and partners’ QoL, we conducted hierarchical regression analyses with scores on the MOS SF-36 as criteria. For patients, illness related variables (disease duration, TMS, and MMS scores) were entered as control variables, prior to the steps containing the patients’ and partners’ scores on the IPQ (step 2 and 3, respectively). For partners, parallel analyses were conducted, but no control variables were entered. The variables for the regression analyses were selected based on an examination of bivariate correlations between the illness perception dimensions and the QoL scales. Results Sample characteristics Couples recruited from the Department of Neurology of the LUMC did not differ significantly in demographic or illness related variables from couples from the Dutch Huntington Association. Further analyses were thus conducted on the combined data. In total, 51 HD patients (28 males, 23 females) and their partners (23 males, 28 females) were included in this study. The mean age of both patients and partners was 51 years (SD = 10). Forty-seven couples were married and four were living together. The mean duration of the relationship was 25 years (range: 2–48 years), and the mean number of children was 2 (range: 0–6). Eight couples did not have children. Thirty-nine patients (76.5%) were unemployed, of which 28 (54.9%; 19 males, 9 females) stopped working because of HD, whereas 10 (19.6%; 6 males, 4 females) were still working, and 2 (3.9%; males) were retired and receiving pension. Thirty-four partners (66.7%; 19 males, 15 females) were employed, 15 (29.4%) were unemployed (for different reasons including marriage and childbearing; 5 females had never had gainful employment), and 2 (3.9%; males) were retired and receiving a pension. The mean duration of HD was 7 years (SD = 5; range: 1–24). Patients’ mean Total Motor Score (TMS) was 37.8 (SD = 29.5), and their mean score on the MMS was 23.5 (SD = 3.9). Patient-partner differences in illness perceptions 1 Table 1 t IPQ subscales HD patients Partners a b Mean (SD) Mean (SD) t Identity .44 (.22) .55 (.22) .57*** −3.59*** Timeline 4.70 (.63) 4.50 (.81) .10 1.44 Consequences 3.60 (1.19) 3.82 (1.01) .29* −1.16 Cure 1.72 (1.77) 1.69 (1.69) .90*** .27 Control 3.11 (1.72) 2.36 (1.58) .30* 2.73** a b t P P P Partners reported that the HD patients were suffering from significantly more symptoms (on the “Identity” subscale) of HD than the patients did themselves, and reported experiencing significantly less control over HD than the patients did. Correlations between illness perceptions and QoL 2 3 2 Table 2 Pearson correlations between Illness Perceptions (IPQ) and patients’ QoL (MOS SF-36)  IPQ patients IPQ partners Identity Timeline Consequences Control Cure Identity Timeline Consequences Control Cure MOS subscales           Physical functioning −.51*** .48*** −.31* .37** −.33* −.43** .28* −.31* .39** −.39** Role functioning (physical)     −.31*     −.29* General health −.39**  −.31*   −.31*     Vitality −.44** .34* −.35*    .33*   −.35* Social functioning −.32*  −.38**       −.31* Role functioning (emotional)           Mental health −.40**  −.39**        Note P P P 3 patient Table 3 Pearson correlations between Partners’ and Patients’ Illness Perceptions (IPQ), and Partners’ QoL (MOS SF-36)  IPQ partners IPQ patients Identity Timeline Consequences Control Cure Identity Timeline Consequences Control Cure MOS subscales           Physical functioning  .29*         Role functioning (physical)   −.38**        General health         .28*  Vitality  .33* −.29*      .30*  Social functioning           Role functioning (emotional)         .33*  Mental health   −.40**     −.33*   Note P P P Importance of spousal illness perceptions for patients’ QoL 4 P P Table 4 Hierarchical regressions examining if spousal illness perceptions explain additional variance in patients’ QoL Step and variables R² R² F R² MOS physical functioning a .49 .52 17.05*** 2. Illness perceptions (patient): identity, timeline, consequences, control, cure .59 .14 3.29* 3. Illness perceptions (partner): identity, timeline, consequences, control, cure .64 .08 2.06 MOS role functioning (physical) a .01 .07 1.23 2. Illness perceptions (patient): cure .11 .09 5.83* 3. Illness perceptions (partner): cure  .09 .00 0.01 MOS general health a .10 .15 2.84* 2. Illness perceptions (patient): identity, consequences .18 .11 3.24* 3. Illness perceptions (partner): identity .16 .00 0.08 MOS vitality a .12 .18 3.35* 2. Illness perceptions (patient): identity, timeline, consequences .29 .20 4.65** 3. Illness perceptions (partner): timeline, cure .41 .13  5.62** MOS social functioning a .01 .05 0.83 2. Illness perceptions (patient): identity, consequences .11 .15 4.18* 3. Illness perceptions (partner): cure .16 .06 3.51 a P P P The variance in patients’ scores on the other subscales of the MOS SF-36 was explained mainly by patients’ own IPQ scores, with the amount of added explained variance ranging from 9 to 20%. Less perceived consequences, a less strong illness identity, more control, and less belief in treatment contributed significantly to better QoL. Importance of patients’ illness perceptions for partners’ QoL 5 P Table 5 Hierarchical regressions examining if spousal illness perceptions explain additional variance in partners’ QoL Step and variables R² R² F R² MOS vitality 1. Illness perceptions (partner): timeline, consequences .17 .21 6.26** 2. Illness perceptions (patient): control .24 .08  5.05* MOS mental health 1. Illness perceptions (partner): consequences .14 .16 9.04** 2. Illness perceptions (patient): consequences .17 .05 3.11 P P P Most variance was explained by partners’ own IPQ scores, with amount of explained variance ranging from 16 to 21%. A longer perceived illness (and thus life) duration, and less perceived consequences contributed significantly to better QoL. Discussion 15 Examining the relationships between spousal illness perceptions and patients’ QoL, the results indicate that none of the partners’ perceptions (whether consonant or dissimilar) are relevant in being associated with patients’ quality of life in the areas of mental health and emotional role functioning. Partners’ identity and consequences perceptions (whether consonant or dissimilar) are not associated with patients’ quality of life in the areas of social functioning and vitality. Partners’ consequences perceptions (whether consonant or dissimilar) are not relevant for patients’ quality of life in the area of general health. Also, less partner (but not patient) belief in cure through treatment was related to higher patients’ vitality and social functioning ratings. Thus, our results suggest that except for patients’ physical functioning, it is of limited use to investigate (only) dissimilarities in illness perceptions of patients and partners as determinants of patient outcomes in HD. 15 38 39 40 41 42 43 44 29 45