| Title |
Desmoid fibromatosis through the patients’ eyes: time to change the focus and organisation of care?
|
|---|---|
| Published in |
Supportive Care in Cancer, August 2018
|
| DOI | 10.1007/s00520-018-4386-8 |
| Pubmed ID | |
| Authors |
Olga Husson, Eugenie Younger, Alison Dunlop, Lucy Dean, Dirk C. Strauss, Charlotte Benson, Andy J. Hayes, Aisha Miah, Winan van Houdt, Shane Zaidi, Myles Smith, John Williams, Robin L. Jones, Winette T. A. van der Graaf |
| Abstract |
Desmoid fibromatosis (DF) is a rare, unpredictable disease with no established, evidence-based treatments. Individual management is based on consensus algorithms. This study aimed to examine the specific health-related quality of life challenges faced by DF patients, current experiences and expectations of care. Twenty-seven DF patients were purposively sampled from The Royal Marsden Hospital. Two focus groups and 13 interviews (males 12, females 15; mean age at study 39.5 years) explored health-related quality of life issues and experiences of healthcare. Thematic content was analysed. Discussions revealed four key themes (diagnostic pathway; treatment pathway; living with DF; supportive care). Diagnostic delay resulted from lack of recognition by patients and healthcare professionals. Some patients received an initial diagnosis of cancer, causing significant distress. Treatment decisions were challenging, and patients experienced uncertainty among clinicians about optimal therapies. Side-effects of treatment were severe, including fatigue, nausea, anorexia, low libido and depression. Pain was the most debilitating symptom and dependency on painkillers was a significant concern. Functional limitation and restricted mobility frequently affected daily activities. Patients experienced difficulty accomplishing their role in society; relationship problems, caring for children, employment and financial difficulties. Social isolation and lack of understanding were common. The psychological impact of this "life-changing and life-long" condition was profound. All patients requested knowledgeable healthcare professionals, more information, continuity of care and peer support. DF patients face complex physical, psychological and practical challenges. Comprehensive care services are needed. Increasing awareness may help to improve diagnostic pathways and overall patient experience. |
X Demographics
The data shown below were collected from the profiles of 21 X users who shared this research output. Click here to find out more about how the information was compiled.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| United Kingdom | 8 | 38% |
| United States | 3 | 14% |
| Netherlands | 3 | 14% |
| Brazil | 1 | 5% |
| Unknown | 6 | 29% |
Demographic breakdown
| Type | Count | As % |
|---|---|---|
| Members of the public | 12 | 57% |
| Practitioners (doctors, other healthcare professionals) | 6 | 29% |
| Scientists | 2 | 10% |
| Science communicators (journalists, bloggers, editors) | 1 | 5% |
Mendeley readers
The data shown below were compiled from readership statistics for 156 Mendeley readers of this research output. Click here to see the associated Mendeley record.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Unknown | 156 | 100% |
Demographic breakdown
| Readers by professional status | Count | As % |
|---|---|---|
| Student > Bachelor | 19 | 12% |
| Student > Doctoral Student | 12 | 8% |
| Student > Ph. D. Student | 10 | 6% |
| Researcher | 9 | 6% |
| Student > Master | 9 | 6% |
| Other | 27 | 17% |
| Unknown | 70 | 45% |
| Readers by discipline | Count | As % |
|---|---|---|
| Psychology | 20 | 13% |
| Nursing and Health Professions | 18 | 12% |
| Medicine and Dentistry | 15 | 10% |
| Unspecified | 6 | 4% |
| Social Sciences | 5 | 3% |
| Other | 17 | 11% |
| Unknown | 75 | 48% |
Attention Score in Context
This research output has an Altmetric Attention Score of 20. This is our high-level measure of the quality and quantity of online attention that it has received. This Attention Score, as well as the ranking and number of research outputs shown below, was calculated when the research output was last mentioned on 19 August 2023.
All research outputs
#1,825,985
of 24,884,310 outputs
Outputs from Supportive Care in Cancer
#256
of 4,962 outputs
Outputs of similar age
#37,438
of 340,046 outputs
Outputs of similar age from Supportive Care in Cancer
#13
of 105 outputs
Altmetric has tracked 24,884,310 research outputs across all sources so far. Compared to these this one has done particularly well and is in the 92nd percentile: it's in the top 10% of all research outputs ever tracked by Altmetric.
So far Altmetric has tracked 4,962 research outputs from this source. They typically receive a little more attention than average, with a mean Attention Score of 6.0. This one has done particularly well, scoring higher than 94% of its peers.
Older research outputs will score higher simply because they've had more time to accumulate mentions. To account for age we can compare this Altmetric Attention Score to the 340,046 tracked outputs that were published within six weeks on either side of this one in any source. This one has done well, scoring higher than 88% of its contemporaries.
We're also able to compare this research output to 105 others from the same source and published within six weeks on either side of this one. This one has done well, scoring higher than 87% of its contemporaries.