PATIENT / CARER QUESTIONNAIRE

Transcription

1 PATIENT / CARER QUESTIONNAIRE Name of organisation (only applicable if you are submitting information on behalf of a patient organisation or support group): Medicine and indication under consideration: Adalimumab (Humira ) for the treatment of active moderate to severe hidradenitis suppurativa (acne inversa) in adolescents from 12 years of age with an inadequate response to conventional systemic HS therapy Date by which questionnaire should be received: 17 th April 2017 We would like to understand the patient / carer experience and any information you are able to provide, either positive or negative, would be very helpful. We contact clinical experts to give the clinical facts and views. Please complete this questionnaire and it to the All Wales Therapeutics and Toxicology Centre (AWTTC) at the address below. Alternatively, you may complete the questionnaire by hand and return it to the postal address below. Should you have any queries or if, for whatever reason, you find it difficult to complete this questionnaire then please contact AWTTC (see contact details below) and we will endeavour to help. It is not possible for questionnaires to be presented in person at the appraisal meetings the patient advocate (i.e. the lay member) will undertake this role. The information contained in this questionnaire will not be posted on the but will be circulated to members with other documents prior to the appraisal meetings. Section 1: General information and medicine-specific details: To be completed by patients, carers and family members, or patient organisations on their behalves. Experience of the condition and associated treatments (information may be equally relevant to any future submissions that you might make). Information specific to the medicine under consideration. Section 2: Patient organisation details: Only to be completed if you are submitting information on behalf of a patient organisation or support group. October 2012 Page 1 of 5

2 These details may not change and can be used for any other questionnaires that the patient organisation wishes to complete (in relation to other medicines/appraisals). October 2012 Page 2 of 5

3 Section 1: General information & medicine-specific details Section 1 should be completed by patients, carers and family members, or patient organisations on their behalves. Experience of the condition and associated treatments Q1 Please state whether you are an individual patient, a patient carer or a family member, or a patient organisation Q2 From a patient or patient carer perspective, please state how this condition affects your day to day life Q3 What experience have you had of any treatments for the condition in question? Include any advantages or disadvantages Q4 Which aspects of living with this condition are NOT MET by the treatments currently available? What do patients need the most help with? The new medicine Q5 What do you consider are the advantages / benefits (or disadvantages / risks) of this new medicine for patients/carers? What impact might this new medicine have on your life? October 2012 Page 3 of 5

4 Section 2: Patient organisation details Section 2 should ONLY be completed if you are submitting information on behalf of a patient organisation or support group. All patient information should be anonymous and organisations are reminded of the Data Protection Act, the Freedom of Information Act 2000 and Human Rights Act. AWTTC will treat all submitted information in confidence but it will be normal practice for AWTTC in its advice to AWMSG to make reference to having taken into consideration any submission received from a patient/patient carer or support group. If, for whatever reason, you would prefer your organisation not to be named, please tick the box in question 6. Information about your organisation Q1 Please provide an overview of your organisation It would be helpful to include its aims and an outline of membership Q2 Please list any pharmaceutical companies that are corporate members of your organisation Q3 Please provide full details of any funding received from the pharmaceutical companies received within the last TWO years Pharmaceutical company Amount of funding received Purpose of funding Q4 Please provide details of any individual(s) who played a significant role in informing your submission The description should include the following: Is the individual a shareholders or director of the pharmaceutical company who manufacture this medicine? Has the individual, or the organisation of which they are part, received support in cash or kind from the company, but not related to this specific medicine? Has the individual, or the organisation of which they are part, received support in cash or kind in respect of this specific medicine? Has the individual participated in clinical trial work for this specific medicine? October 2012 Page 4 of 5

5 Q5 Would you prefer your organisation NOT to be named in the final report presented to AWMSG? If so, please put X in the box October 2012 Page 5 of 5