Introduction
Methods
Study population
Measures
Sociodemographic and medical variables
Child HRQoL
Parental QoL
Parental distress
Statistical analysis
Study population
Description of proxy-reported child HRQoL, parental QoL and distress
Agreement in paternal and maternal proxy HRQoL scores
Determinants of caregiver disagreement
Results
Study population
Parents | ||
---|---|---|
Mothers | Fathers | |
Relationship to child | ||
Parent | 119 | 118 |
Stepparent | 1 | 2 |
Mean age (SD) | 42.2 (7.4) | 45.1 (7.6) |
Marital status (%) | ||
Married/living together | 113 (94.2) | 114 (95.0) |
Single/divorced/widowed | 7 (5.8) | 6 (5.0) |
Country of birth (%) | ||
The Netherlands | 112 (93.3) | 110 (91.7) |
Other | 8 (6.7) | 10 (8.3) |
Educational levela (%) | ||
Low | 11 (9.2) | 13 (10.8) |
Middle | 61 (50.8) | 49 (40.8) |
High | 44 (36.7) | 54 (45.0) |
Other | 1 (0.8) | 0 (0.0) |
Unknown | 3 (2.5) | 4 (3.3) |
Self-reported chronic illness (%) | ||
Yes | 32 (26.7) | 15 (12.5) |
No | 85 (70.8) | 99 (82.5) |
Unknown | 3 (2.5) | 6 (5.0) |
Mean SF-12 Mental Component Summary score (SD) | 46.3 (12.3) | 50.2 (9.5)* |
Mean SF-12 Physical Component Summary score (SD) | 52.7 (7.6) | 52.8 (7.3) |
Mean distress thermometer score (SD) | 3.4 (2.8) | 2.6 (2.6)* |
Children | |
---|---|
Child's sex (%) | |
Male | 60 (50.0) |
Female | 60 (50.0) |
Diagnosis (%) | |
Hematologic malignancy | 42 (35.0) |
Brain tumor | 28 (23.3) |
Solid tumor | 42 (35.0) |
Retinoblastoma | 8 (6.7) |
Relapse/second tumor (%) | |
Yes | 13 (10.8) |
No | 107 (89.2) |
Mean child age at study in years (SD) | 11.0 (5.7) |
Mean time since diagnosis in months (SD) | 39.4 (17.2) |
Cumulative treatmentb (%) | |
Low risk | 26 (21.7) |
Middle risk | 53 (44.2) |
High risk | 41 (34.2) |
Active treatment at time of study (%) | |
Yes | 16 (13.3) |
No | 104 (86.7) |
Description of proxy-reported child HRQoL, parental QoL and distress
Proxy-rated HRQoL scale | Parents of healthy children (n = 618–711) [21] | Fathers of children with cancer (n = 95–113) | Mothers of children with cancer (n = 95–113) | Parental agreement (oncology sample) | Mean difference father–mother (SD) | ES |
---|---|---|---|---|---|---|
Mean (SD) | Mean (SD) | Mean (SD) | ICC [95% CI] | |||
Total HRQoL | 87.6 (12.3) | 80.1 (17.6)* | 79.1 (18.0)* | 0.83* [0.76, 0.88] | 0.97 (10.4) | 0.05 |
PSHS | 86.6 (12.8) | 79.2 (17.2)* | 77.6 (17.8)* | 0.78* [0.68, 0.85] | 1.66 (11.7) | 0.09 |
Physical functioning | 89.3 (16.4) | 80.9 (22.3)* | 81.6 (22.2)* | 0.83* [0.76, 0.88] | -0.68 (13.0) | 0.03 |
Emotional functioning | 82.6 (17.5) | 74.4 (22.3)* | 72.1 (21.9)* | 0.80* [0.71, 0.86] | 2.28 (14.0) | 0.10 |
Social functioning | 91.6 (14.2) | 82.0 (18.6)* | 80.4 (20.1)* | 0.65* [0.53, 0.74] | 1.64 (16.3) | 0.08 |
School functioning | 85.5 (17.6) | 79.9 (20.2)* | 78.0 (21.6)* | 0.67* [0.54, 0.76] | 1.95 (17.1) | 0.09 |
Proxy-rated HRQoL scale | MCS mothers | PCS mothers | MCS fathers | PCS fathers | Distress mothers | Distress fathers |
---|---|---|---|---|---|---|
Total HRQoL | 0.47* | − 0.01 | 0.47* | 0.18 | − 0.53* | − 0.54* |
PSHS | 0.46* | 0.04 | 0.47* | 0.19 | − 0.52* | − 0.56* |
Physical functioning | 0.38* | − 0.03 | 0.38* | 0.14 | − 0.46* | − 0.43* |
Emotional functioning | 0.35* | 0.12 | 0.50* | 0.26* | − 0.44* | − 0.61* |
Social functioning | 0.31* | 0.11 | 0.41* | 0.13 | − 0.42* | − 0.37* |
School functioning | 0.42* | − 0.05 | 0.31* | 0.07 | − 0.39* | − 0.40* |
Agreement in paternal and maternal proxy HRQoL scores
Determinants of caregiver disagreement
Quartile | Total HRQoL score | PSHS score | Physical functioning score | Emotional functioning score | Social functioning score | School functioning score |
---|---|---|---|---|---|---|
Mean difference (SD) | Mean difference (SD) | Mean difference (SD) | Mean difference (SD) | Mean difference (SD) | Mean difference (SD) | |
p0-25 | 0.38 (0.53) | 0.54 (0.78) | 0.00 (0.00) | 0.00 (0.00) | 0.00 (0.00) | 0.00 (0.00) |
p25-50 | 3.14 (0.80) | 3.80 (1.24) | 3.33 (0.61) | 4.94 (0.27) | 5.26 (1.31) | 5.00 (0.00) |
p50-75 | 7.16 (1.72) | 8.29 (2.26) | 9.38 (2.46) | 10.0 (0.00) | 11.4 (2.26) | 11.5 (2.79) |
p75-100 | 18.6 (5.53) | 20.1 (6.68) | 23.6 (8.30) | 23.2 (8.01) | 28.0 (8.37) | 29.9 (11.3) |
Difference in total HRQoL (p75-100) | Difference in PSHS (p75-100) | Difference in physical functioning score (p75-100) | Difference in emotional functioning score (p75-100) | Difference in social functioning score (p75-100) | Difference in school functioning score (p75-100) | |
---|---|---|---|---|---|---|
OR [95% CI] | OR [95% CI] | OR [95% CI] | OR [95% CI] | OR [95% CI] | OR [95% CI] | |
Child (medical) variables | ||||||
Age | 0.94 [0.85–1.03] | 0.97 [0.89–1.06] | 1.02 [0.94–1.10] | 0.98 [0.91–1.06] | 0.99 [0.92–1.07] | 0.98 [0.90–1.07] |
Female sex | 0.92 [0.35–2.34] | 1.39 [0.55–3.46] | 0.62 [0.25–1.55] | 0.74 [0.32–1.71] | 1.78 [0.76–4.15] | 0.90 [0.36–2.22] |
Brain tumor versus hematologic malignancy | 0.85 [0.24–3.04] | 1.10 [0.32–3.74] | 0.87 [0.27–2.83] | 0.40 [0.11–1.44] | 1.14 [0.38–3.41] | 0.73 [0.23–2.39] |
Solid tumor versus hematologic malignancy | 0.56 [0.18–1.72] | 0.66 [0.22–1.97] | 0.61 [0.20–1.87] | 0.70 [0.25–1.92] | 0.76 [0.27–2.14] | 0.26 [0.08–0.85]*** |
Retinoblastoma versus hematologic malignancy | 2.56 [0.31–21.0] | 1.70 [0.24–12.0] | 1.16 [0.19–7.04] | 6.27 [1.09–36.3]*** | 1.62 [0.33–8.06] | 1.22 [0.18–8.36] |
Relapse or second tumor | 1.39 [0.33–5.89] | 2.06 [0.53–8.02] | 1.67 [0.47–5.98] | 4.94 [1.47–16.6]*** | 1.27 [0.36–4.46] | 1.33 [0.32–5.57] |
Time since diagnosis | 0.99 [0.96–1.01] | 0.99 [0.96–1.01] | 0.97 [0.94–1.00]*** | 1.00 [0.97–1.02] | 0.99 [0.97–1.02] | 1.00 [0.98–1.03] |
Active treatment | 3.06 [0.84–11.2]** | 4.17 [1.15–15.2]*** | 3.67 [1.10–12.2]*** | 1.64 [0.49–5.46] | 1.00 [0.30–3.44] | 2.43 [0.70–8.49]** |
Parental couples’ variables | ||||||
Difference in educational level | 0.77 [0.29–2.01] | 0.56 [0.21–1.49] | 0.63 [0.24–1.66] | 0.85 [0.36–2.03] | 0.70 [0.29–1.65] | 0.87 [0.34–2.22] |
Difference in cultural background | – | – | 0.57 [0.07–4.94] | 0.39 [0.05–3.37] | 1.11 [0.20–6.07] | – |
Difference in mental quality of life (MCS) | 1.02 [0.96–1.08] | 1.03 [0.97–1.08] | 1.06 [1.00–1.11]*** | 1.00 [0.95–1.05] | 1.01 [0.97–1.06] | 1.05 [1.00–1.11]** |
Discrepancy in distress level (clinical/non clinical) | 2.29 [0.79–6.60]* | 1.79 [0.63–5.02] | 2.69 [0.97–7.45]** | 1.92 [0.76–4.86] | 1.07 [0.41–2.79] | 1.08 [0.37–3.19] |
Difference in total HRQoL (p75-100) | Difference in PSHS (p75-100) | Difference in physical functioning score (p75-100) | Difference in emotional functioning score (p75-100) | Difference in school functioning score (p75-100) | |
---|---|---|---|---|---|
OR [95% CI] | OR [95% CI] | OR [95% CI] | OR [95% CI] | OR [95% CI] | |
Child (medical) variables | |||||
Age | |||||
Female sex | |||||
Brain tumor versus hematologic malignancy | 0.41 [0.11–1.60] | ||||
Solid tumor versus hematologic malignancy | 0.80 [0.27–2.34] | ||||
Retinoblastoma versus hematologic malignancy | 9.14 [1.5–54.9]** | ||||
Relapse or second tumor | 6.49 [1.84–22.9]** | ||||
Time since diagnosis | |||||
Active treatment | 3.06 [0.84–11.2]* | 4.17 [1.15–15.2]** | |||
Parental couples’ variables | |||||
Difference in educational level | |||||
Difference in cultural background | |||||
Difference in mental quality of life (MCS) | 1.06 [1.00–1.11]** | 1.05 [1.00–1.11]* | |||
Discrepancy in distress level (clinical/non clinical) |