Background
Methods
Participants and procedure
Measures
Supportive care needs: The short-form Supportive Care Needs Survey questionnaire (SCNS-SF34)
Perceived social support: The short-version Multidimensional Scale of Perceived Social Support
Psychological distress: The Kessler Psychological Distress Scale (K6)
Quality of life (QOL): The EuroQol 5 Dimensions 5 Levels (EQ-5D-5L)
Demographic and medical characteristics
Characteristic | N | % | |
---|---|---|---|
Age | mean: 33.7 (SD = 4.3) | median: 34.5 (range, 22–39) | |
Gender | Female | 180 | 87.4 |
Male | 26 | 12.6 | |
Education | < 12 y | 86 | 41.7 |
> 12 y | 120 | 58.3 | |
Marital status | Married | 102 | 49.5 |
Single or divorced | 104 | 50.5 | |
Household size | Living alone | 45 | 21.8 |
Two or more | 161 | 78.2 | |
Having children | None | 128 | 62.1 |
Age < 20 | 76 | 36.9 | |
Age > 20 | 3 | 1.5 | |
Occupational status | Full-time | 65 | 31.6 |
Part-time | 51 | 24.8 | |
Absence from work | 16 | 7.8 | |
Housemaker | 46 | 22.3 | |
Unemployed | 23 | 11.2 | |
Student | 1 | 0.5 | |
Others | 4 | 1.9 | |
Change in income status after cancer diagnosis | |||
No change | 103 | 50.0 | |
Decreased | 86 | 41.7 | |
Increased | 17 | 8.3 | |
Change in work and school life after cancer diagnosis | |||
No change | 91 | 44.2 | |
Work/study hour decreased | 20 | 9.7 | |
Absence from work/school | 50 | 24.3 | |
Left work/school | 58 | 28.1 | |
Changed jobs/schools | 22 | 10.7 | |
Firing | 2 | 1.0 | |
Other | 5 | 2.4 | |
Caring for parents | No | 192 | 93.2 |
Yes | 14 | 6.8 | |
Performance statusa | 0 | 147 | 71.4 |
1 | 52 | 25.2 | |
2 | 4 | 1.9 | |
3 | 2 | 1.0 | |
4 | 1 | 0.5 | |
Cancer site | Uterus | 84 | 40.8 |
Breast | 25 | 12.1 | |
Thyroid | 23 | 11.2 | |
Ovary | 17 | 8.3 | |
Lymphoma | 15 | 7.3 | |
Leukemia | 13 | 6.3 | |
Intestine/rectum | 13 | 6.3 | |
Other | 16 | 7.8 | |
Age of the first diagnosis | < 30 | 111 | 53.9 |
> 30 | 95 | 46.1 | |
Years since diagnosis | < 1 year | 33 | 16.0 |
1–5 years | 105 | 51.0 | |
5–10 years | 47 | 22.8 | |
> 10 years | 21 | 10.2 | |
Recurrence/metastasis | No | 164 | 79.6 |
Yes | 15 | 7.3 | |
Unknown | 27 | 13.1 | |
Chemotherapy | Never | 116 | 56.3 |
Yes (undergoing) | 16 | 7.8 | |
Yes (completed) | 74 | 35.9 |
Sample size calculations
Statistical analysis
Results
Patient characteristics
Prevalence of unmet supportive care needs
Unmet needs | total (N = 206) | Gender | Marital status | Children | Chemotherapy | |||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
Male (N = 26) | Female (N = 180) | p | Married (N = 102) | Single (N = 104) | p | Have (N = 76) | None (N = 128) | p | No (N = 116) | Under (N = 16) | Done (N = 74) | p | ||
(%) | (%) | (%) | (%) | (%) | (%) | (%) | (%) | (%) | (%) | |||||
Psychological | ||||||||||||||
Fears of spreading of cancer | 54.9 | 57.6 | 54.4 | 0.756 | 54.9 | 54.8 | 0.989 | 51.3 | 57.0 | 0.421 | 48.3 | 75.0 | 60.0 | 0.058 |
Feeling down or depressed | 51.5 | 61.5 | 50.0 | 0.271 | 44.1 | 58.7 | 0.037 * | 42.3 | 57.0 | 0.040* | 48.3 | 75.0 | 51.4 | 0.134 |
Anxiety | 48.1 | 53.8 | 47.2 | 0.527 | 42.2 | 53.8 | 0.093 | 39.7 | 53.1 | 0.062 | 40.5 | 75.0 | 54.1 | 0.015 * |
Concerns about the worries of those close to you | 46.6 | 53.4 | 45.6 | 0.428 | 41.1 | 51.9 | 0.122 | 42.3 | 49.2 | 0.335 | 39.7 | 68.8 | 52.7 | 0.039 * |
Feelings of sadness | 45.1 | 50.0 | 44.4 | 0.595 | 38.2 | 51.9 | 0.048 * | 37.2 | 50.0 | 0.073 | 39.7 | 75.0 | 47.3 | 0.026 * |
Uncertainty about future | 44.2 | 53.8 | 42.8 | 0.288 | 36.3 | 51.9 | 0.024 * | 33.3 | 50.8 | 0.014 * | 34.5 | 68.8 | 54.1 | 0.004** |
Worry that results of treatment are beyond your control | 41.7 | 23.1 | 44.4 | 0.039 * | 42.2 | 41.3 | 0.906 | 41.0 | 42.3 | 0.870 | 35.3 | 81.3 | 40.5 | 0.002** |
Keeping a positive outlook | 39.8 | 53.8 | 37.8 | 0.118 | 32.6 | 47.1 | 0.030 * | 28.2 | 46.9 | 0.008 ** | 33.6 | 68.8 | 54.1 | 0.020 * |
Feelings about death and dying | 35.9 | 38.5 | 35.6 | 0.773 | 31.4 | 40.4 | 0.178 | 33.3 | 37.5 | 0.545 | 28.4 | 50.0 | 44.6 | 0.037 * |
Physical and daily living | ||||||||||||||
Lack of energy/tiredness | 46.1 | 42.3 | 46.7 | 0.677 | 40.1 | 51.9 | 0.091 | 37.2 | 51.6 | 0.045 * | 45.7 | 75.0 | 40.5 | 0.043 * |
Work around the home | 42.2 | 50.0 | 41.1 | 0.391 | 31.4 | 52.9 | 0.002 | 30.8 | 49.2 | 0.009 ** | 34.5 | 75.0 | 47.3 | 0.005 ** |
Feeling unwell a lot of the time | 36.9 | 46.2 | 35.6 | 0.295 | 30.4 | 43.3 | 0.055 | 23.1 | 45.3 | 0.001 ** | 32.8 | 56.3 | 39.2 | 0.166 |
Health system and information | ||||||||||||||
Being informed about things you can do to help yourself to get well | 40.3 | 42.3 | 40.0 | 0.823 | 37.3 | 43.3 | 0.379 | 38.5 | 41.4 | 0.676 | 35.3 | 68.8 | 41.9 | 0.036 * |
Being informed about your test results as soon as feasible | 38.4 | 46.2 | 37.2 | 0.381 | 35.3 | 41.3 | 0.372 | 37.2 | 39.1 | 0.787 | 35.3 | 56.3 | 39.2 | 0.268 |
Being given explanation of those tests for which you would like explanations | 37.8 | 50.0 | 36.1 | 0.172 | 32.4 | 43.3 | 0.106 | 29.5 | 43.0 | 0.053 | 37.9 | 56.2 | 33.8 | 0.244 |
Being informed about cancer which is under control or diminishing | 37.3 | 46.2 | 36.1 | 0.322 | 31.4 | 43.3 | 0.078 | 32.1 | 40.6 | 0.217 | 33.6 | 68.8 | 36.5 | 0.024 * |
Being adequately informed about the benefits and side-effects of treatments before you choose to have them | 37.0 | 46.2 | 35.6 | 0.295 | 33.3 | 40.4 | 0.294 | 33.3 | 39.1 | 0.408 | 35.3 | 56.3 | 35.1 | 0.248 |
Having one member of hospital with whom you can talk to about all aspects of your condition, treatment and followup | 36.8 | 38.5 | 36.7 | 0.859 | 31.4 | 42.3 | 0.104 | 32.1 | 39.8 | 0.261 | 34.5 | 50.0 | 37.8 | 0.473 |
Having access to professional counseling if you, family or friends need it | 36.4 | 42.3 | 35.6 | 0.504 | 32.4 | 40.4 | 0.231 | 38.5 | 40.6 | 0.107 | 26.7 | 62.5 | 45.9 | 0.002** |
Being treated like a person not just another case | 35.4 | 42.3 | 34.4 | 0.433 | 28.4 | 42.3 | 0.037 * | 29.5 | 39.1 | 0.163 | 28.4 | 62.5 | 40.5 | 0.015 * |
Sexuality | ||||||||||||||
Changing in sexual feelings | 35.4 | 26.9 | 33.9 | 0.332 | 31.4 | 34.6 | 0.359 | 28.2 | 35.9 | 0.428 | 35.3 | 25.0 | 37.8 | 0.622 |
Factors associated with unmet needs
Total needs | Physical & daily living needs | Psychological needs | ||||||||||
B | β | t | p | B | β | t | p | B | β | t | p | |
PS (0, 1, 2, 3, 4) | 19.401 | 0.313 | 4.723 | < 0.001 | 3.499 | 0.409 | 6.686 | < 0.001 | 5.514 | 0.280 | 4.252 | < 0.001 |
Change in work & school life (Ref: yes) | −14.622 | −0.190 | −2.889 | 0.004 | −2.916 | −0.275 | −4.491 | < 0.001 | −5.873 | − 0.240 | −3.676 | < 0.001 |
Social support | −0.561 | − 0.144 | − 2.267 | 0.024 | – | – | – | – | − 0.184 | − 0.148 | − 2.356 | 0.019 |
Health system & information needs | Care and support needs | Sexuality needs | ||||||||||
B | β | t | p | B | β | t | p | B | β | t | p | |
PS (0, 1, 2, 3, 4) | 6.279 | 0.263 | 3.764 | < 0.001 | 2.804 | 0.266 | 3.858 | < 0.001 | 1.406 | 0.247 | 3.647 | < 0.001 |
Change in work & school life (Ref: yes) | 3.725 | 0.125 | 1.771 | 0.078 | −1.667 | −0.128 | −1.862 | 0.064 | – | – | – | – |
Social support | −0.189 | − 0.126 | −1.888 | 0.060 | − 0.088 | − 0.133 | −2.018 | 0.045 | – | – | – | – |