GI Consequences Economic Evaluation
Condition: Cancer
Study type: Observational

Summary: 
      An estimated 90,000 patients are suffering from long term gastrointestinal problems after
      cancer treatments, and whilst the National Cancer Survivorship Initiative have been working
      to develop specific pathways of care, these pathways lack in both specialised tariff funding
      and awareness. This study aims to assess the economic and personal impact on patients
      suffering from stomach and/or bowel problems after cancer treatment prior to referral to the
      Gastrointestinal and Nutrition Team (GIANT) at the Royal Marsden Hospital. All patients
      referred to the GIANT service (including private patients but excluding re referrals) will be
      offered participation in the study.

      The study will consist of a 9 page patient retrospective questionnaire, asking questions
      about investigations and medications prescribed over the past year, as well as costs and
      methods of trying to treat their symptoms themselves, and the personal cost to themselves of
      their symptoms through loss of work and emotional impact. As this questionnaire asks patients
      questions about the past year, and thus can be difficult to answer accurately, patient
      answers will be validated for reliability by sending a 1 page questionnaire to their GP
      asking the same questions about clinic visits concerning stomach/bowel problems,
      investigations and medications prescribed in the past year. Once this data is collected from
      the participants, and the study has finished, the average cost of clinical interventions,
      economic impact, and personal impact, will be calculated.

      The results from this study will be useful in helping to show the economic burden of GI
      symptoms, and will provide evidence as to the economic benefit of specialised clinics for the
      consequences of cancer treatment; highlighting the need for a nationally recognised algorithm
      for management.
    

Detailed description: 
      The number of people who survive cancer has tripled in the past 30 years; however, chronic
      physical consequences of treatment for cancer adversely affect the quality of life of 20-25%
      of survivors. The largest group of patients reporting debilitating chronic side effects are
      those treated with radiotherapy alone or in combination with other treatments for pelvic
      cancer. Gastrointestinal symptoms are the most common chronic physical side effects reported,
      and have the greatest effect on daily activity. Overall, 50% of patients report that that
      their gastrointestinal symptoms affect their quality of life, and 20-40% state that this
      effect is moderate or severe. Such problems include chronic faecal incontinence (up to 60% of
      patients) after radiotherapy for prostate or rectal cancer (53, 54), and chronic loose stool
      (47%), defaecatory urgency (29%), or chronic abdominal pain (17%) after radiotherapy for
      gynecological cancer.

      In 2010, the UK National Cancer Survivorship Initiative Vision challenged professionals to
      develop new models of care for patients because "the needs of cancer survivors are not being
      met, that being 'cured' of cancer does not necessarily equate with being well and that
      chronic consequences of treatment can have a devastating impact on daily life". The National
      Cancer Survivorship Initiative accepts that currently there is limited access to specialist
      services, despite an estimated 90,000 people in the UK experiencing long-term
      gastrointestinal problems as a consequence of cancer treatment. Furthermore, recent surveys
      of clinical oncologists and gastroenterologists concur with this sentiment, highlighting a
      lack of available expertise; with two UK audits of gastroenterology consultants and
      oncologists demonstrating no improvement in provision of specialist services between 2003 to
      2010. Whilst NHS Improvement has developed stratified pathways of care, the Roadmap for
      Recovery report created recently by the Anthony Nolan Bone Marrow Transplant charity
      underlined the ongoing issue of lack of specialised commissioning of services for complex
      consequences of cancer treatment. It is estimated that £40 million (DoH) is wasted annually
      in futile and dangerous treatments for Pelvic Radiation Disease alone; academic estimates
      suggest this is closer to £80 million . Furthermore the incapacitating affects of GI symptoms
      leads to both loss of productivity and huge social costs. Currently there is no NHS tariff
      payable for GI consequences of cancer treatment; however the mean cost per completed episode
      of care by the GIANT (Gastrointestinal and Nutrition Team) service was calculated, amounting
      to an average cost of £1563 per patient. This can be compared to a tariff of £14,800 per
      woman treated with chemo-radiation for cervical cancer, and a cost in excess of £45,000 for a
      person with rectal cancer treated with long course chemo-radiation followed by surgery and
      adjuvant chemotherapy. With specialist clinics lacking, it can be assumed that the majority
      of people living with GI consequences of cancer treatment are being treated by their GPs;
      however, the Quality and Outcomes Framework by which GP Surgeries are measured and awarded
      financial incentives includes no domain or measure for gastrointestinal problems; and there
      have been no studies into the cost of managing patients with GI problems as a consequence of
      cancer treatment outside of the GIANT service. This exploratory study is a step in this
      direction.
    

Intervention name(s): GIANT Completed patient
Intervention type(s): Other
Intervention description(s): Patients identified in the GIANT clinic and who fulfill the inclusion criteria will be sent a 9 page questionnaire. Upon receipt the questionnaire will be sent to the patient's GP for validation.
Observational model: Cohort
Time perspective: Retrospective
Sampling method: Non-Probability Sample
Study population: 
        All patients cured of cancer and are experiencing GI symptoms due to radio or chemotherapy
        during the last one year.