Useful research links
NCINs National Cancer e-Atlas
CUP patient experiences - US research
bioTheranostics, a company specializing in molecular diagnostics for oncology, administered the CUP Patient Experiences survey with the Association of Oncology Social Work (AOSW) during the first quarter of 2009. There were 140 responses. Findings from this survey validate the need for oncology professionals to create information resources and networks that will address specific, identified gaps in psychosocial support for current CUP patients.
CUP is a common clinical issue for oncology social workers (OSWs)
- 80 percent of OSWs see CUP patients at least several times a year
- More than 40 percent see at least 10 CUP patients per year
Patients with CUP experience more distress than cancer patients who have received a definitive diagnosis
- According to the OSWs surveyed, the majority of CUP patients (81 percent) feel more distress than patients with a definitive cancer diagnosis
- Specifically, 39 percent of OSWs felt that a CUP diagnosis is significantly more distressing/extremely distressing and 42 percent felt it is more distressing than even a specific cancer diagnosis.
CUP patients face – and are negatively impacted by – unique psychological and clinical issues
- OSWs believe that the three greatest challenges faced by patients diagnosed with CUP are “general fear associated with battling something unknown” (38 percent), “lack of a definitive best therapy for them” (37.3 percent) and “frustration and/or anger that their cancer can’t be identified” (21.1 percent).
- Ranking the intensity of challenges faced by CUP patients on a scale of 1 to 10, the OSWs surveyed rated “lack of definitive best therapy” an 8.6, “general fear of battling something unknown” an 8.3, “lack of prognosis or predicted therapy outcome” an 8.1, and “frustration and/or anger that their cancer can’t be identified” a 7.8.
Educational and supportive resources tailored to CUP are either not available or not well-known
- The OSWs surveyed noted that it is difficult to find other CUP patients or a disease-specific organization with which to connect their CUP patients for support and information
Despite the prevalence and serious psychological impact of CUP, OSW professionals are not well-trained to address this condition
- Thirty-four percent of survey respondents say they feel their initial training left them only “minimally prepared” to address the distress experienced by CUP patients; 31 percent say they feel they were “moderately prepared”
- Only 20 percent of OSWs feel “well” or “very well” prepared by their initial training to address CUP patients’ distress
OSWs want information and resources to better support their CUP patients, and have clear information and training preferences
- In order to better provide services to patients with CUP diagnoses, OSWs said they need best practice information from other OSW professionals (85 percent), information about resources designed specifically for CUP patients (77 percent) and information about how oncologists approach medical treatment for CUP patients (75 percent)
- Fifty percent of OSWs said that, in terms of CUP training and information, they have benefited from tumor boards/tumor conferences; 43 percent relied on their own reading and research; and just under 41 percent have benefited from peer/team discussions
Gene Expression (Molecular) Profiling
Rather like Betamax versus VHS in the early days of videos there are different technologies to profiling DNA or RNA from a biopsy sample in order to try and characterise the cancer (Complementary DNA (cDNA) Micro-Array and Reverse Transcription-Polymerase Chain Reaction (RT-PCR)).
This is a fast-moving area of research and development with some tests commercially available and some still under development. Tests usually work by measuring a number of genes and comparing the patient's sample with a reference database of the gene expression profile of known cancers to build a genetic portrait of the cancer.
The latest information we have is drawn from Ross, J.S. & Mazumder, A. Tissue microarrays & gene chips in Wick, Mark. R (ed) (2008) Metastatic carcinomas of unknown origin. NY: Demos medical publishing.
Information concerned with the NHS
Duties of a Primary Care Trust (PCT). This link is to the Harris Report (forwarded by Sarcoma UK) and is a useful source for anyone considering a PCT appeal for treatment which has been refused. The Harris Report was commissioned by NHS London. The author is one of its own team who is both a doctor and a lawyer - Dr Andrew Harris. He gives a very full picture in legal terms of the duties of a PCT. Dr Harris claims copyright on the front cover but the report has been supplied through Freedom of Information by his employer without any noted restrictions and therefore can be regarded as in the public domain.
Top-up payments in England and Wales . Professor Mike Richards' report sets out a series of recommendations on improving access to medicines for NHS patients. It also makes recommendations on the consequences for NHS patients of seeking additional private care. Professor Richards presented his report to the Secretary of State who accepted the recommendations in full on 4 November 2008.
The CUP picture worldwide
Not only is the website an essential resource but the Foundation has been instrumental in bringing together experts from across the world and encouraging the development of research to improve the outcomes of patients with CUP. Dr Andrew Fowell, Macmillan Consultant in Palliative Medicine
Thanks for your help. My family, son is also a doctor, have found it an invaluable resource from day 1 [of my husband’s CUP diagnosis]. Gillian (UK GP)
This website is a fantastic resource.
Dr Maurice Slevin, Medical Oncologist
Your website is such a good way of providing information that empowers the patient/carer.
Anne (former CUP patient)
Already a fantastic achievement as a resource!!!
Dr. H Wasan, Consultant and Reader in Medical Oncology