Table 2.
Patients’ and health care professionals’ suggestions for research questions.
| Themes | Patients |
Health care professionals |
Total | ||
|---|---|---|---|---|---|
| No. | Example suggestions | No. | Example suggestions | ||
| Calcinosis | 7 | Research on calcinosis/calcification, and reducing or eliminating calcinosis caused by scleroderma; add questions on calcium deposits (calcification) to SPIN questionnaires | 1 | Effect of calcinosis on quality of life | 8 |
| Quality of life | 3 | Impact of mouth involvement on daily life; impact of pain on daily life; tools to help manage its impact | 4 | Impact of environmental factors on patients’ lives; prevalence of oral complications and their impacts on quality of life; effect of pruritus on quality of life; impact of diet on scleroderma symptoms and quality of life | 7 |
| Psychological | 4 | Relationship between emotional distress and age and types of scleroderma; impact of stress on patients with scleroderma and triggering symptoms (e.g. gastrointestinal symptoms); emotional impact of living with scleroderma on young adults | 3 | Impact of positive vs negative thinking on the disease; determine the scleroderma type (i.e. diffuse or limited) with the highest risk of developing anxiety and/or depression; determine what aggravates the harmful psychological effects of scleroderma (i.e. the presence of physical changes or changes in interpersonal relationships) | 7 |
| Accessing health care | 2 | Research on the health service utilization patterns for people with scleroderma and the consistency across Canada; clinicians’ knowledge of scleroderma | 5 | Research how health professionals should give diagnoses; patients’ access to specific care (including dental care); family doctor relationship with scleroderma patients; ways to improve/regulate the physician–patient relationship; ways to choose a qualified mental health professional | 7 |
| Gastrointestinal involvement | 6 | Research on heartburn, bowel issues, dental issues, and telangiectasia in scleroderma; relationship between scleroderma and gastrointestinal problems; add questions and choices of responses on esophagus problems and ulcers to SPIN questionnaires | 0 | – | 6 |
| Nutrition and environment | 4 | Importance of food and environment for reducing pain; loss of taste; impact of nutrition and environment on chronic diseases; add diet-related questions to SPIN assessments | 1 | Impact of ketogenic, gluten-free, paleo diets on scleroderma symptoms; types of food that will make symptoms worse | 5 |
| Physical activity | 4 | Research on practical and ergonomic exercises to keep flexibility and strength in muscles; effects of exercises on improving scleroderma symptoms; add exercise-related questions to SPIN assessments; the benefits of exercise and relaxation techniques | 0 | – | 4 |
| Body image and social interactions | 1 | Changes to physical appearance of the face: thickening of the skin | 0 | – | 1 |
| Caregivers | 0 | – | 1 | Creating surveys to understand caregiver concerns and how they think they can be helped | 1 |
| Sleep | 1 | Research on sleep deprivation related to scleroderma | 0 | – | 1 |
| Intimacy and sexuality | 0 | – | 1 | Consequences of scleroderma for sexual health | 1 |
| Others | 4 | Research on Sjogren’s syndrome and arthritis; research on treatments for joint pain; add choices of responses on supporting materials; research on mobility, dermatology, dryness of the skin | 5 | Professional consequences of having scleroderma; factors that impair work adherence; common coping patterns among patients with systemic sclerosis, if these patterns change over time, and if they change depending on severity of illness; the role of social support in adjustment/adaptation to illness; research on intercultural perceptions of disability or medication preferences | 9 |
| Beyond SPIN’s scope | 8 | Research on treatments and medication issues, alternative medicine and supplements, the origin of scleroderma, neuropathy symptoms and genetic factors in scleroderma, and how cancer treatments can affect the progression of scleroderma (positively or negatively); research on food and dietary advice that help scleroderma patients prolong their lives; research on relationship between leaky gut/allergies/autoimmune responses and onset of scleroderma | 0 | – | 8 |
SPIN: Scleroderma Patient-centered Intervention Network.