Table 2.
Prevalence of Unmet Palliative Care Needs in Adults with CF (N=164)
| Overall Rank | Prevalence | Need | Domain |
|---|---|---|---|
| 1 | 65% | Lack of energy/tiredness | Physical & daily living |
| 2 | 52% | Feeling unwell a lot of the time | Physical & daily living |
| 3 | 50% | Fears about my cystic fibrosis getting worse | Psychological |
| 4 | 43% | Not being able to do the things you used to do | Physical & daily living |
| 5 | 40% | Anxiety | Psychological |
| 6 | 39% | Uncertainty about the future | Psychological |
| 7 | 38% | Worry that the results of treatment are beyond your control | Psychological |
| 8 | 37% | Pain | Physical & daily living |
| 9 | 35% | Work around the home | Physical & daily living |
| 10 | 34% | Concerns about the worries of those close to you | Psychological |
| 11 | 31% | Keeping a positive outlook | Psychological |
| 12 | 30% | Feeling down or depressed | Psychological |
| 13 | 29% | Learning to feel in control of your situation | Psychological |
| 14 | 28% | Feelings of sadness | Psychological |
| 15 | 25% | Being informed about whether your cystic fibrosis is under control | Health system & information |
| 16 | 24% | Feelings about death and dying | Psychological |
| 17 | 21% | Being informed about things you can do to help yourself to get well | Health system & information |
| 18 | 19% | More choice about which doctor you see | Patient care & support |
| 19 | 18% | Being treated in a hospital or clinic that is as physically pleasant as possible | Health system & information |
| 20 | 17% | Having one member of hospital staff with whom you can talk to about all aspects of your condition, treatment and follow-up | Health system & information |
| 21 (tie) | 16% | Being treated like a person, not just another case | Health system & information |
| 21 (tie) | 16% | Being informed about your test results as soon as feasible | Health system & information |
| 21 (tie) | 16% | Changes in sexual relationships | Sexuality |
| 21 (tie) | 16% | More choice about which hospital you attend | Patient care & support |
| 26 (tie) | 16% | Being adequately informed about the benefits and side-effects of treatments before you choose to have them |
Health system & information |
| 26 (tie) | 16% | Hospital staff attending promptly to your physical needs | Patient care & support |
| 27 | 15% | Having access to professional counselling (eg, psychologist, social worker, counsellor, nurse specialist) if you/, family, or friends need it | Health system & information |
| 28 (tie) | 13% | Being given explanations of those tests for which you would like explanations | Health system & information |
| 28 (tie) | 13% | Reassurance by medical staff that the way you feel is normal | Patient care & support |
| 28 (tie) | 13% | Hospital staff acknowledging, and showing sensitivity to, your feelings and emotional needs | Patient care & support |
| 28 (tie) | 13% | Changes in sexual feelings | Sexuality |
| 32 | 9% | Being given written information about the important aspects of your care | Health system & information |
| 33 | 8% | Being given information (written, diagrams, drawings) about aspects of managing your illness and side-effects at home | Health system & information |
| 34 | 6% | Being given information about sexual relationships | Sexuality |