Psychosocial Outcomes in Parents of Children with Acute Lymphoblastic Leukaemia in Australia and New Zealand Through and Beyond Treatment
Simple Summary
Abstract
1. Introduction
2. Materials and Methods
2.1. Participants
2.2. Measures
2.3. Statistical Analysis
2.4. Psychological Safeguards
3. Results
3.1. Demographics
3.2. Trends over Time
3.3. Emotion Thermometer Responses
3.4. PROMIS Questionnaire Responses
3.5. Risk Factor Analysis
3.6. Correlation Between the Emotion Thermometer Tool and PROMIS Questionnaires
4. Discussion
4.1. Strengths and Limitations
4.2. Future Research Directions
4.3. Clinical Implications
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
Appendix A
Emotion Thermometer (ET) Scores 2 | n | % |
---|---|---|
Median (IQR) ET distress | 2 (0–5) | |
Above clinical cut-off | 126 | 38.5 |
Missing response | 4 | 1.2 |
Median (IQR) ET anxiety | 4 (1–7) | |
Above clinical cut-off | 171 | 52.3 |
Missing response | 5 | 1.5 |
Median (IQR) ET depression | 1.5 (0–4) | |
Above clinical cut-off | 96 | 29.4 |
Missing response | 5 | 1.5 |
Median (IQR) ET anger | 2 (0–4) | |
Above clinical cut-off | 88 | 26.9 |
Missing response | 5 | 1.5 |
Median (IQR) ET need for help | 1 (0–3) | |
Above clinical cut-off | 78 | 23.9 |
Missing response | 9 | 2.8 |
PROMIS scores 3 | n | % |
Median (IQR) PROMIS anxiety T-score | 54.7 (46.2–61.5) | |
Anxiety within normal limits | 164 | 50.2 |
Mild anxiety | 64 | 19.6 |
Moderate anxiety | 86 | 26.3 |
Severe anxiety | 12 | 3.7 |
Missing response | 1 | 0.3 |
Median (IQR) PROMIS depression T-score | 51.3 (44.4–56.9) | |
Depression within normal limits | 219 | 67.0 |
Mild depression | 59 | 18.0 |
Moderate depression | 46 | 14.1 |
Severe depression | 2 | 0.6 |
Missing response | 1 | 0.3 |
Median (IQR) PROMIS anger T-score | 54.3 (44.7–58.8) | |
Anger within normal limits | 132 | 57.1 |
Mild anger | 55 | 23.8 |
Moderate anger | 44 | 19.05 |
Severe anger | 0 | 0 |
Missing response | 1 | 0.4 |
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Patient Information | n | % |
---|---|---|
Median age in years at diagnosis (range) | 7 (0.5–18) | |
Age < 10 | 85 | 72.6 |
Age ≥ 10 | 32 | 27.4 |
Male | 71 | 60.7 |
Female | 46 | 39.3 |
Metropolitan * | 90 | 76.9 |
Inner regional * | 22 | 18.8 |
Outer regional or remote * | 5 | 4.3 |
SEIFA # rank <20th centile | 7 | 6.0 |
SEIFA rank 20–40th centile | 19 | 16.2 |
SEIFA rank 40–60th centile | 21 | 17.9 |
SEIFA rank 60–80th centile | 27 | 23.1 |
SEIFA rank >80th centile | 32 | 27.4 |
Unknown (New Zealand) | 11 | 9.4 |
Treated on COG protocols | 75 | 64.1 |
Treated on BFM protocols | 42 | 35.9 |
Low/standard risk ALL | 41 | 35.0 |
Medium risk ALL | 35 | 29.9 |
High risk ALL | 41 | 35.0 |
Presence or development of treatment-related toxicity | 35 | 29.9 |
Child relapsed during study | 4 | 3.4 |
Child died during study | 2 | 1.7 |
Time Since Child’s Diagnosis | Total Number of Survey Responses | Number of Clinically Elevated Measures in Parent Responses = n (%) | ||||
---|---|---|---|---|---|---|
0 | 1 | 2 | 3 | ≥4 | ||
0–6 months | 67 | 9 (13.4) | 11 (16.4) | 10 (14.9) | 10 (14.9) | 27 (40.3) |
6–12 months | 46 | 15 (32.6) | 6 (13.0) | 2 (4.3) | 6 (13.0) | 17 (37.0) |
12–18 months | 48 | 21 (43.8) | 6 (12.5) | 3 (6.3) | 2 (4.2) | 16 (33.3) |
18–24 months | 48 | 17 (35.4) | 9 (18.8) | 4 (8.3) | 3 (6.3) | 15 (31.3) |
2–3 years | 63 | 27 (42.9) | 8 (12.7) | 1 (1.6) | 8 (12.7) | 19 (30.2) |
>3 years | 55 | 21 (38.2) | 9 (16.4) | 6 (10.9) | 6 (10.9) | 13 (23.6) |
All time points | 327 | 110 (33.6) | 49 (15.0) | 26 (8.0) | 35 (10.7) | 107 (32.7) |
Single Variable Analysis | Multiple Variable Analysis | ||||
---|---|---|---|---|---|
Estimate (95% CI) | p-Value | Estimate (95% CI) | p-Value | ||
ET Distress | Time since diagnosis | −0.04 (−0.06 to −0.01) | 0.001 * | −0.07 (−0.13 to −0.02) | 0.013 * |
Child’s age at diagnosis | 0.02 (−0.08 to 0.13) | 0.67 | 0.10 (−0.02 to 0.36) | 0.49 | |
Child’s sex | 0.40 (−0.43 to 1.23) | 0.34 | 0.06 (−1.47 to 1.59) | 0.94 | |
SEIFA index | −0.01 (−0.03 to 0.004) | 0.13 | −0.01 (−0.04 to 0.02) | 0.38 | |
ALL study group (COG/BFM) | −0.35 (−1.19 to 0.49) | 0.41 | −0.02 (−1.75 to 1.35) | 0.80 | |
Risk stratification | −0.33 (−1.35 to 0.70) | 0.53 | 0.73 (−1.29 to 2.74) | 0.48 | |
Presence of toxicity | 0.29 (−0.65 to 1.23) | 0.54 | 0.22 (−1.26 to 1.70) | 0.77 | |
ET Anxiety | Time since diagnosis | −0.02 (−0.05 to 0.001) | 0.06 | −0.06 (−0.12 to 0.01) | 0.11 |
Child’s age at diagnosis | −0.03 (−0.14 to 0.09) | 0.63 | 0.04 (−0.29 to 0.38) | 0.80 | |
Child’s sex | 0.44 (−0.45 to 1.33) | 0.33 | 0.68 (−1.21 to 2.56) | 0.48 | |
SEIFA index | −0.01 (−0.03 to 0.004) | 0.15 | −0.02 (−0.05 to 0.02) | 0.38 | |
ALL study group (COG/BFM) | 0.09 (−0.91 to 0.99) | 0.85 | 0.003 (−1.90 to 1.90) | 1.00 | |
Risk stratification | −0.38 (−1.46 to 0.70) | 0.49 | −1.05 (−3.18 to 1.08) | 0.33 | |
Presence of toxicity | 0.32 (−0.68 to 1.33) | 0.53 | 0.28 (−1.51 to 2.06) | 0.76 | |
ET Depression | Time since diagnosis | −0.01 (−0.03 to 0.01) | 0.33 | −0.02 (−0.06 to 0.01) | 0.21 |
Child’s age at diagnosis | 0.02 (−0.08 to 0.12) | 0.74 | 0.03 (−0.12 to 0.18) | 0.69 | |
Child’s sex | 0.40 (−0.41 to 1.21) | 0.33 | 0.22 (−0.89 to 1.32) | 0.70 | |
SEIFA index | −0.01 (−0.02 to 0.01) | 0.42 | −0.001 (−0.02 to 0.02) | 0.95 | |
ALL study group (COG/BFM) | −0.36 (−1.18 to 0.46) | 0.39 | −0.04 (−1.21 to 1.12) | 0.94 | |
Risk stratification | −0.36 (−1.34 to 0.62) | 0.47 | −0.39 (−1.79 to 1.01) | 0.59 | |
Presence of toxicity | 0.13 (−0.79 to 1.05) | 0.78 | 0.50 (−0.76 to 1.76) | 0.44 | |
ET Anger | Time since diagnosis | −0.01 (−0.03 to 0.01) | 0.53 | −0.006 (−0.03 to 0.02) | 0.62 |
Child’s age at diagnosis | −0.01 (−0.11 to 0.09) | 0.84 | −0.05 (−0.16 to 0.07) | 0.42 | |
Child’s sex | 0.38 (−0.35 to 1.11) | 0.31 | 0.30 (−0.47 to 1.07) | 0.45 | |
SEIFA index | −0.02 (−0.03 to −0.004) | 0.013 * | −0.02 (−0.03 to −0.001) | 0.038 * | |
ALL study group (COG/BFM) | −0.76 (−1.49 to −0.04) | 0.040 * | −0.48 (−1.27 to 0.32) | 0.24 | |
Risk stratification | 0.21 (0.68 to 1.10) | 0.64 | 0.15 (−0.79 to 1.09) | 0.76 | |
Presence of toxicity | 0.39 (−0.42 to 1.20) | 0.34 | 0.14 (−0.73 to 1.02) | 0.75 | |
ET Need for Help | Time since diagnosis | −0.02 (−0.04 to 0.00) | 0.045 * | −0.04 (−0.08 to 0.01) | 0.11 |
Child’s age at diagnosis | −0.06 (−0.16 to 0.03) | 0.19 | 0.07 (−0.23 to 0.38) | 0.63 | |
Child’s sex | 0.090 (−0.68 to 0.86) | 0.82 | 0.23 (−1.47 to 1.92) | 0.79 | |
SEIFA index | −0.01 (−0.03 to 0.003) | 0.11 | −0.01 (−0.04 to 0.02) | 0.40 | |
ALL study group (COG/BFM) | 0.12 (−0.65 to 0.89) | 0.75 | 0.15 (−1.54 to 1.84) | 0.86 | |
Risk stratification | 0.11 (−0.81 to 1.04) | 0.81 | −0.68 (−2.56 to 1.20) | 0.48 | |
Presence of toxicity | 0.10 (−0.75 to 0.95) | 0.81 | 0.15 (−1.34 to 1.64) | 0.84 | |
PROMIS Anxiety | Time since diagnosis | −0.19 (−0.28 to −0.10) | <0.001 * | −0.18 (−0.28 to −0.09) | <0.001 * |
Child’s age at diagnosis | −0.29 (−0.75 to 0.16) | 0.21 | 0.14 (−0.38 to 0.66) | 0.60 | |
Child’s sex | 2.83 (−0.70 to 6.36) | 0.11 | 2.17 (−1.59 to 5.92) | 0.26 | |
SEIFA index | 0.001 (−0.07 to 0.07) | 0.97 | −0.002 (−0.08 to 0.07) | 0.95 | |
ALL study group (COG/BFM) | 2.20 (−1.38 to 5.78) | 0.23 | 3.30 (−0.62 to 7.22) | 0.10 | |
Risk stratification | 0.69 (−3.62 to 4.99) | 0.75 | 0.54 (−4.17 to 5.26) | 0.82 | |
Presence of toxicity | −2.60 (−6.42 to 1.21) | 0.18 | −2.57 (−6.79 to 1.65) | 0.23 | |
PROMIS Depression | Time since diagnosis | −0.12 (−0.21 to −0.04) | 0.004 * | −0.13 (−0.22 to −0.04) | 0.006 * |
Child’s age at diagnosis | −0.15 (−0.58 to 0.27) | 0.48 | 0.28 (−0.21 to 0.77) | 0.26 | |
Child’s sex | 1.48 (−1.71 to 4.67) | 0.36 | 0.41 (−3.04 to 3.85) | 0.82 | |
SEIFA index | −0.007 (−0.07 to 0.06) | 0.82 | 0.003 (−0.06 to 0.07) | 0.92 | |
ALL study group (COG/BFM) | −0.23 (−3.47 to 3.01) | 0.89 | 0.30 (−3.29 to 3.89) | 0.87 | |
Risk stratification | −0.85 (−4.73 to 3.04) | 0.67 | −1.60 (−5.85 to 2.66) | 0.46 | |
Presence of toxicity | −2.28 (−5.56 to 1.00) | 0.17 | −2.53 (−6.18 to 1.13) | 0.18 | |
PROMIS Anger | Time since diagnosis | −0.024 (−0.14 to 0.09) | 0.68 | −0.03 (−0.16 to 0.10) | 0.63 |
Child’s age at diagnosis | −0.17 (−0.67 to 0.32) | 0.50 | −0.02 (−0.60 to 0.56) | 0.94 | |
Child’s sex | 1.64 (−2.44 to 5.72) | 0.43 | 2.05 (−2.39 to 6.49) | 0.36 | |
SEIFA index | 0.004 (−0.07 to 0.08) | 0.92 | −0.02 (−0.10 to 0.07) | 0.67 | |
ALL study group (COG/BFM) | 1.38 (−2.69 to 5.45) | 0.50 | 1.37 (−3.16 to 5.90) | 0.55 | |
Risk stratification | 0.11 (−4.69 to 4.91) | 0.96 | −0.89 (−6.28 to 4.51) | 0.75 | |
Presence of toxicity | −3.28 (−7.33 to 0.78) | 0.11 | −4.24 (−8.81 to 0.34) | 0.07 |
Pearson Correlation (95% CI) | p-Value | |
---|---|---|
Anxiety | 0.44 (0.35–0.52) | <0.001 * |
Depression | 0.34 (0.24–0.43) | <0.001 * |
Anger | 0.17 (0.05–0.30) | 0.008 * |
Kappa Statistic | p-Value | |
---|---|---|
Anxiety | 0.14 | <0.001 * |
Depression | 0.16 | <0.001 * |
Anger | 0.09 | 0.060 |
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Parker, C.; Schilstra, C.E.; McCleary, K.; Martin, M.; Trahair, T.N.; Kotecha, R.S.; Ramachandran, S.; Cockcroft, R.; Conyers, R.; Cross, S.; et al. Psychosocial Outcomes in Parents of Children with Acute Lymphoblastic Leukaemia in Australia and New Zealand Through and Beyond Treatment. Cancers 2025, 17, 1238. https://doi.org/10.3390/cancers17071238
Parker C, Schilstra CE, McCleary K, Martin M, Trahair TN, Kotecha RS, Ramachandran S, Cockcroft R, Conyers R, Cross S, et al. Psychosocial Outcomes in Parents of Children with Acute Lymphoblastic Leukaemia in Australia and New Zealand Through and Beyond Treatment. Cancers. 2025; 17(7):1238. https://doi.org/10.3390/cancers17071238
Chicago/Turabian StyleParker, Clare, Clarissa E. Schilstra, Karen McCleary, Michelle Martin, Toby N. Trahair, Rishi S. Kotecha, Shanti Ramachandran, Ruellyn Cockcroft, Rachel Conyers, Siobhan Cross, and et al. 2025. "Psychosocial Outcomes in Parents of Children with Acute Lymphoblastic Leukaemia in Australia and New Zealand Through and Beyond Treatment" Cancers 17, no. 7: 1238. https://doi.org/10.3390/cancers17071238
APA StyleParker, C., Schilstra, C. E., McCleary, K., Martin, M., Trahair, T. N., Kotecha, R. S., Ramachandran, S., Cockcroft, R., Conyers, R., Cross, S., Dalla-Pozza, L., Downie, P., Revesz, T., Osborn, M., Marshall, G. M., Wakefield, C. E., Mateos, M. K., & Fardell, J. E. (2025). Psychosocial Outcomes in Parents of Children with Acute Lymphoblastic Leukaemia in Australia and New Zealand Through and Beyond Treatment. Cancers, 17(7), 1238. https://doi.org/10.3390/cancers17071238