TABLE 2. Percentage of Participants Reporting No Need, Some Need, and Moderate to High Need for Each Item, by Domain.
| Domain | Level of need (%) |
||
| None | Some | Moderate to high | |
| Physical | |||
| Tiredness | 10 | 90 | 67 |
| Dealing with pain | 20 | 80 | 61 |
| Not sleeping well | 25 | 75 | 52 |
| Digestive problems | 40 | 60 | 38 |
| Nausea and/or vomiting | 66 | 34 | 20 |
| Dry mouth | 39 | 61 | 30 |
| Mouth ulcers | 57 | 43 | 19 |
| Maintaining dental health | 59 | 41 | 27 |
| Headaches | 45 | 55 | 34 |
| Shortness of breath | 44 | 56 | 32 |
| Feeling worse after physical activity | 29 | 71 | 48 |
| Urinary frequency or difficulty | 53 | 47 | 30 |
| Skin rashes | 44 | 56 | 32 |
| Daily living | |||
| Writing problems | 75 | 25 | 11 |
| Speaking problems | 80 | 20 | 6 |
| Reading difficulties | 77 | 23 | 5 |
| Difficulty thinking clearly | 49 | 51 | 21 |
| Eyes being sensitive to bright light | 29 | 71 | 38 |
| Coping with the heat | 30 | 70 | 46 |
| Coping with the cold | 33 | 67 | 43 |
| Avoiding sun exposure | 28 | 72 | 41 |
| Shopping | 54 | 46 | 28 |
| Difficulty with driving | 70 | 30 | 12 |
| Psychological/existential | |||
| Feeling down or depressed | 29 | 71 | 43 |
| Feeling angry about having SLE | 51 | 49 | 29 |
| Feeling uncertain about the future | 32 | 68 | 44 |
| Dealing with anxiety or stress | 21 | 79 | 52 |
| Anxiety about treatment | 40 | 60 | 36 |
| Concerns about changes in your appearance | 35 | 65 | 40 |
| Not being able to do the things you used to do | 23 | 77 | 57 |
| Fears about the SLE getting worse again | 20 | 80 | 62 |
| Fears about physical disability | 26 | 74 | 50 |
| Feeling like a failure as a wife/husband/parent | 49 | 51 | 31 |
| Feeling isolated and/or lonely | 43 | 57 | 28 |
| Finding meaning in this experience of having SLE | 61 | 39 | 25 |
| Setting new priorities | 48 | 52 | 27 |
| Social support | |||
| Maintaining relationships with family members | 60 | 40 | 23 |
| Obtaining greater physical and emotional support from your partner/children | 56 | 44 | 28 |
| Concerns about the ability of those close to you to cope with your different level of functioning | 43 | 57 | 32 |
| Changes in your sexual relationships | 56 | 44 | 32 |
| Coping with changes in other people's attitudes and behavior toward you | 45 | 55 | 36 |
| Maintaining relationships with friends | 52 | 48 | 31 |
| Ability to participate in social activities | 40 | 60 | 43 |
| Health services | |||
| Insufficient time to discuss problems when seeing a general or specialist medical practitioner | 55 | 45 | 20 |
| Getting adequate information from medical staff about side effects of treatment | 56 | 44 | 18 |
| Having 1 health care professional to talk to about your whole situation | 55 | 45 | 26 |
| Health care staff acknowledge and show sensitivity to your feelings and emotional needs | 58 | 42 | 21 |
| Knowing when to see your doctor with changes in symptoms | 62 | 38 | 16 |
| Guidance on the amount of exercise, activity, and rest required during different phases of flare or remission | 50 | 50 | 22 |
| Having the opportunity to talk with someone who understands and has had similar experiences | 44 | 56 | 27 |
| Obtaining support for exploring the use of complementary/alternative health therapies | 53 | 47 | 30 |
| Health information | |||
| Obtaining enough current information on SLE and how it particularly affects you | 54 | 46 | 22 |
| Being given written information about the important aspects of your care | 52 | 48 | 21 |
| Information about things you can do to help yourself stay as well as possible | 45 | 55 | 29 |
| Having access to books, videos, cassettes and other resources about SLE | 62 | 38 | 21 |
| Having access to telephone support and an SLE advisory service | 62 | 38 | 20 |
| Counseling services for yourself, family, or friends | 54 | 46 | 21 |
| Being informed about relaxation, meditation, or stress control classes | 50 | 50 | 24 |
| Employment/financial | |||
| Concerns about gaining employment | 80 | 20 | 15 |
| Maintaining a satisfactory performance in your job because of changes in health | 62 | 38 | 23 |
| Meeting basic living expenses | 53 | 47 | 32 |
| Coping with extra costs involved in managing your condition | 47 | 53 | 30 |
Note. SLE = systemic lupus erythematosus. Participants (N = 112) reported level of need using a 5-point scale (1 = not applicable, 2 = already satisfied, 3 = low need, 4 = moderate need, 5 = high need). Participants who rated 1 or 2 on the 5-point scale were grouped as no need, those who rated > 2 on the 5-point scale were grouped as some need, and those who rated 4 or 5 on the 5-point scale were grouped as moderate to high need.