Caring for the Patient with Cytotoxic Chemotherapy - Essay Example

A Patient’s Guide to Chemotherapy: A Critique Patient Information Leaflets (PILs) are very essential in a patient’s life. Patients are advised to know what kind of treatment they are taking or in what condition they are now experiencing. It is a must that they know it by heart. It is their health, so to speak and it is their life. They have all the right to know everything. That is why there are consultations with the doctor. However, according to Wilson [1998], a study showed that patients forget half the doctor’s advise after five minutes they have left the consultation room. This is quite an alarming state. To think that patients are already in a very critical condition, they still have to deal with problems of comprehension. Many are confused especially on the technicality of their disease or treatment. Not everyone can easily understand a doctor’s intellectual explanation. The emergent proliferation of Patient Information Leaflets (PILs) has become an immediate solution to this problem. Leaflets are free consultation take-outs from a trusted doctor; it is an instant consultation. Whenever you forget some details about a disease or a treatment, you can always refer back to your leaflet. The leaflet must contain answers to most frequently asked questions. It can save time and consultation fees. However, the issue at hand is, are they effective? Do patients/relatives/supporters do actually read them. The challenge is to make them read and understand leaflets. Specifically, the main question of this paper is, is the leaflet on Cytotoxic Chemotherapy a helpful guide and preparation for cancer patients and a good source of information for relatives and supporters of these patients? The following paragraphs will be a critical review of “A Patient’s Guide to Chemotherapy”. Target Audience and Significance The leaflet is aimed to guide adult cancer patients undergoing chemotherapy, their families and supporters as evidently mentioned in the first section of the leaflet. Definitely, they are the target audience of the leaflet and not the patients suffering with any other disease or illness. It would be useless to distribute leaflets to those who will not use them. It is very important that these leaflets must go to the hands of the target audience. Leaflets as mentioned earlier are answers to most frequently asked questions, and the leaflet on chemotherapy should answer a cancer patient’s questions on his or her own chemotherapy treatment. It should clarify any gray areas on the said topic. After reading it, the patient or the patient’s supporter must greatly understand the outcomes and caveats of such treatment. Leaflets should contain reliable information - a doctor’s words put into writing. It is important that the information included is relevant, well-researched, timely and practical, taking into consideration that the audience can actually take time to read it. Leaflets will be futile if they provide unnecessary and very wordy information. Leaflets, though it appears a little of physical assistance (and is only a mere written guide), can actually help save a life. Sometimes, it all just takes awareness to make everything better. Leaflets are not just pieces of papers with words and illustrations. They are powerful pieces of papers with clear words and helpful illustrations. Subject and Content To assess the subject and content of the leaflet on Cytotoxic Chemotherapy, I will be using the “Quality Criteria for PILs” produced by Medicines and Healthcare products Regulatory Agency (MHRA) in United Kingdom. Using this, I believe that the leaflet must: 1. Mention further information sources; 2. Mention alternative formats; 3. Utilise simple layman’s terms rather than medical jargons; 4. Utilise short sentences and bullet points; 5. Include benefit statement; 6. Group side effects (include need for action); and 7. Define terms. The following paragraphs contain a detailed analysis for each section of the leaflet. Chemotherapy is a very serious treatment and patients who are undergoing or who are about to undergo such treatment must understand first the nature of this treatment. The first paragraph of the leaflet started with a short description of the contents of the leaflet. It mentioned the purpose of the leaflet and its target audience, which are cancer patients and their supporters. The leaflet also mentioned the inclusion of important contacts of people and organisations involved in the treatment. This is a very good feature since one does not have to refer to a bunch of calling cards just to find the right person to call to. It is also good that they clarified that a leaflet cannot substitute a consultation from a doctor. A leaflet is just a refresher and one cannot replace it as your doctor. What I can recommend is that they make a table of contents, since the booklet is quite long. It is around 20 pages long and the table of contents can help find the exact topic faster. The next paragraph contained a description of the chemotherapy service in the particular hospital. It is a short general description of what to expect with the service. It is commendable that the leaflet included the hospital’s “standards statement”. Patients must absolutely know what to expect with the service they are getting. However, this one can be merged with the previous part on the chemotherapy service. Moreover, I find this part too long and wordy. The next part is the meat of the leaflet. It already contained the FAQs of patients. The first question, “What is Cytotoxic Chemotherapy” provided a brief explanation of the treatment. Definitely, before anything else, a definition of the treatment is very necessary. However, I recommend that the description must be translated into a lay language. It included medical jargons like radiotherapy and hormone therapy without even explaining what it means. According to MHRA [2007], “complex language and medical jargon cause difficulty in understanding by patients.” Thus, it is very necessary to make the descriptions simpler. Patients do not have the same vocabulary with the doctors. The next question, “How is Chemotherapy given?” is a very important section of the leaflet. Patients and supporters need to know the different methodologies involved in the treatment so that they would not be so surprise when they take it. The content is fine and it was explained briefly and satisfactorily. I recommend that they have included pictures on the other complicated methods rather than putting a picture of the first method, which is “by mouth”. A bottle with tablet is not very much of help. Everyone knows what tablets look like. Or, to be consistent, they can just provide pictures for all methods. The next question would be the most common question a patient will ask, which is “Will Chemotherapy hurt?” The answer is very brief and realistic – that it is just painful as any other injection. However, it may leave one wondering if all kinds of injection or the use of the PCC or Central line, as mentioned earlier have the same degrees of pain. On the question, “How does Chemotherapy work?”, it explained how chemotherapy operates on one’s body. The explanation was very clear and concise. However, on the question, “How long will my treatment take? Do I have to stay in hospital?”, it could have been better if they provided a table, instead of putting in a long paragraph. The next two questions, “How often must I have Chemotherapy?” and “How long is my course of treatment?” are overlapping. The answer to the latter question is also found in the former, and it is different. This might lead to serious confusion for the readers. They can merge the two sections since it contains similar ideas. There are no problems for the question, “What about my other medicines or vaccines?” I can suggest that in this section to specifically enumerate or list (in bullets) all kinds of medicines and vaccines to avoid during the chemotherapy treatment. The next section, “Are there any side effects?” is a very heave one, but it is actually necessary to discuss this in great detail. The general side effects included: bone marrow and blood tests, mouth, hair, skin and eyes, fertility and reproduction, and other effects. The contents of this section are very educational. It really helps to include the prevention tips. Many patients will definitely observe that once the different effects have been explained thoroughly. It should be noted that this section is very well-researched. However, this may still be presented in a shorter but still thorough manner. The following section on “Chemotherapy and everyday life” quite confused me because it was not addressed in question form. It was quite confusing if it was included in the previous section or if it is a separate section. Anyhow, the section is very important to be included since a patient must know how he or she is going to deal with everyday life. It is one of the serious aspects of the treatment – will the treatment change the way how I deal with my life? This section included general activity, holidays, feelings and alcohol. I believe there are still a lot to be included (like smoking, etc.) in this section but this one may be enough if you want to keep the booklet short. There is also a section on Clinical Trials. I believe that this section may or may not be included in the leaflet. It is just an option, but it can be a good way to address the need for more research. Maybe it should be written in a more enticing way so that the patients may be encouraged to participate and further contribute to the development of the particular treatment. The next portion included the list of several important contacts like the hospital and other service providers and organisations in the local, regional and national level. It is good that there is a brief description of the organisation, the contact number and the period on which they are available. This section can also be written in a table form for a more easy access and if possible, in alphabetical order. The leaflet also included a “waiver” section, which is to be filled out by the patient regarding the chemotherapy to be received. This is a good section so that the patient and his or her supporters will know the important information needed like the doctor’s name, contact number, the chemotherapy protocol, treatment cycle and medications. This is to ensure that the patient is observing the proper procedures and it reminds the patient on what to do without the hassles of memory gap. Finally on the last page, there is a map on the location of the hospital. This is very useful stuff since a visit to the hospital is always necessary. I suggest that the complete address must be specified in the back for each of the hospitals. A real picture of the place can also help. After I dissected the content of the leaflet; overall, I feel that it contains very insightful and relevant material. Everything written is reliable; however, I suggest that they include for example, a link of a website that contains further information of the topic discussed, since we know that a leaflet can only discuss the subject briefly. If the patient wanted to research further, a reference on the information source is a big plus. Format and Design As Hideki Nakajima puts it, “Content comes first…yet excellent design can catch people’s eyes and impress the content of their memory.” [Patient Information Forum, 2007] The format and design of the leaflet is an important aspect of the assessment. The content is generally fine, but how you present the content will actually have a larger impact. No matter how important and well-researched the subject was, if it was presented in a boring and lousy manner, no one will read it. The leaflet is useless. The design also reflects a certain image or reputation of the hospital. If the leaflet is designed poorly, some may see it as an indicator that the hospital is not doing well and may not have enough budget to produce good quality leaflets. The criteria to be used are as follows (MHRA): 1. Font (choice, style, size) – it must be readable, large enough for the patient to read it with ease; 2. Utilisation of capitals, italics, underlined, bold, etc.; 3. Contrast and choice of colours; 4. Format and line spacing; 5. Utilisation of columns, justification, alignment, sentences, paragraphs – related information must be grouped together; 6. Utilisation of headers, symbols, images; and 7. Utilisation of index The leaflet on “A Patient’s Guide to Chemotherapy” follows a Frequently Asked Questions format. It poses questions and then provides the answers to the particular question. This format provides a direct and more interactive communication with the audience. It is very important to establish a connection to the reader so that he or she can retain the information provided by the leaflet for longer periods of time. The design actually needs improvement. It was just plain black and white. The leaflet itself was not enticing to read. The cover to begin with was very dull. The design lacks style. There was no design at all. There was no creativity nor identity projected in the leaflet. There were no borders and colours that tell that, this leaflet is made by NHS, a hospital providing quality service for its patients. The cover must readily create an image of quality. It was just NHS, with a simple logo and a title with no appeal. The leaflet as a whole looks like a draft version. The design is very old style and it appears that it was simply created in Microsoft Word. There are many softwares out there like Adobe, which can create very professional and modern designs for leaflets. I would like to commend on the readability of the leaflet. The font size was fine. It was very easy to read. The font style was just simple. I would like to recommend that the font colour used in the heading must be different to the contents. For example, the font colour for headings is light blue, while the font colour for the contents is black. There were also some inconsistencies in the utilisation of Capitals, Italics, and Bold settings. Some headings were capitalised, some were in bold, some were in italics, some were both in bold and italics, and some were not bold and italics. It was very confusing. There must be a uniform setting for headings. Also, some headings were in question form, some were one-word, some phrases and some were in full sentences. I would also like to comment on inconsistency of the format used. The first paragraph was aligned to the left, which was the proper way because it was not justified to the right. However on the next section, specifically on the section “The Chemotherapy Service”, the paragraphs were centered. The spacing was okay. Since it is just a leaflet, it is advisable to use single space to maximise the space provided. However, there were parts in the leaflet that there was no space in between the next paragraph, which makes it look very cramped. Moreover, there were sentences that do not end with a period, especially on those that are in bullet form. In terms of symbols and images used, I prefer that they use actual pictures to make it more appealing and realistic. Pictures must not be placed arbitrarily. It should be used to further elaborate a topic, which requires more explanation that cannot be put into writing. Some description like in the methods, require pictures to help the patient understand what it really is. Pictures can also help stimulate the interest of the reader. The map in the last portion of the leaflet must be accurately be illustrated. I also recommend the use of the table of contents or to help in accessing a particular information faster. The directory of contacts can also be formatted in a more space-saving kind of way. The format used in the part of the side effects can also be improved. The indentions were confusing. Also they can put a uniform heading on the specific prevention for every given side effect. For example one may put “To prevent:” in order to see distinguish it from the explanations of the side effects. Generally, the leaflet suffers greatly on the format and design criteria and needs more improvement. No matter how good the content is, with poor design, the patient won’t read it. Quality Monitoring Quality is one of the big issues in health information such as this leaflet. There have been rampant productions of leaflets all around the country and not all of them can be regarded as quality information. According to Patient Information Forum (PIF), in the context of health information, it can be considered good quality if it is accessible, usable and reliable. Accessibility means that patients or the target audience can readily have access to this health information. Does it use the appropriate medium and format? For example, will a leaflet on Chemotherapy that is written in English be accessible to a patient who is not a native English speaker? Another issue to consider here is that if it is necessary to produce different versions of the leaflet to cater different nationalities living in the area. If a patient is also blind, will a leaflet be useful? Are they available in different formats like pdf and can it be downloaded from the website? These are some things to be considered when tackling the issue of accessibility. Usability, meanwhile, is when the target audience can use the information without any hassles involved. For example, is it user-friendly? Is the format used in the leaflet easy to understand? The last criterion, which is reliability, is more inclined on the content of the leaflet. Does the information used in the leaflet the most updated and are there evidences that support it? How was it written? Did it include all kinds of methods, options, costs and benefits? Is the information objective, unbiased and inconsistent? These are the things you have to consider when dealing with reliability. To assess, you can refer to the Patient Information Forum Website to access the tools on accessibility, usability and reliability. As an aside, though there were reports during the late 1990s regarding the poor quality of health information distributed in the Internet, there seems to be an improvement nowadays [Pandolfini and Bonati, 2002]. Also, a common practice among health organisations is to hold a test to evaluate the leaflet per se, like what was done by Harwood and Harrison [2004] on the readability of orthodontic PILs. The Medicines and Healthcare products Regulatory Agency (MHRA) also mentioned about different test companies utilising different methodologies in assessing the quality of the leaflets. One may undertake a one-on-one interview or hold a survey test. No matter what, it should answer to the needs of optimising the quality of health information provided to the public. In conclusion, the leaflet on Cytotoxic Chemotherapy needs further improvement and assessment especially on the aspect of format and design. Tools are available in the Internet and they are very helpful if utilised properly. There are many websites which offers templates or “best practice” leaflets which may be held as an example and guide to produce more quality and relevant leaflets. Word Count (excluding Title and References): 3,202 References BCH. (2007). Cytotoxic Chemotherapy. Accessed on December 27, 2007 at Birmingham Children’s Hostipal website: http://www.bch.org.uk/acrobat/Cytoxic%20Chemotherapy.pdf Christie Hospital. (n.d.). Chemotherapy: A guide for patients and their families. Accessed on December 27. 2007 at Christie Hospital website: http://www.christie.nhs.uk/patients/booklets/pdf/chemo/Chemotherapy-Urdu-English.pdf Harwood, A. and J. E. Harrison. (2004). “How readable are orthodontic patient information leaflets?” Journal of Orthodontics, Vol. 31, 210-219. Accessed on December 27, 2007 at Journal of Orthodontics website: jorthod.maneyjournals.org/cgi/content/abstract/31/3/210. Kenny, T. and Associates. (1998). “A PIL for every ill? Patient information leaflets (PILs): a review of past, present and future use.” Family Practice, Vol. 15: 5. Accessed on December 27, 2007 at Oxford Journals website: http://fampra.oxfordjournals.org/cgi/content/abstract/15/5/471. MHRA. (n.d.). Further guidance on designing patient information leaflets and how to achieve success in user testing. Accessed December 27, 2007 at MHRA website: www.mhra.gov.uk/home/idcplg?IdcService=GET_FILE&dDocName=con2030572&RevisionSelectionMethod=Latest. MHRA. (n.d.). Quality criteria for PILs. Accessed on December 27, 2007 at MHRA website: www.mhra.gov.uk/home/idcplg?IdcService=GET_FILE&dID=37304&noSaveAs=0&Rendition=WEB MHRA (2005). Guidance on the user testing of patient information leaflets. Accessed on December 27, 2007 at PAGB website: www.pagb.co.uk/pagb/downloads/usertesting/mhraguidanceonusertesting.pdf. NHS. (2003). Toolkit for producing patient information. Accessed on December 27, 2007 at NHS website: http://www.nhsidentity.nhs.uk/patientinformationtoolkit/patientinfotoolkit.pdf. NIDCR. (1999). “Chemotherapy and Oral Care.” Oral Health, Cancer Care and You. Accessed on December 27, 2007 at Health Touch website: http://www.healthtouch.com/bin/EContent_HT/hdShowLfts.asp?lftname=ORAL007&cid=HTHLTH Pandolfini, C. and M. Bonati. [2002]. “Follow up of quality of public oriented health information on the world wide web: systematic re-evaluation.” British Medical Journal 324: 582-583. Accessed on December 27, 2007 at BMJ website: http://www.bmj.com/cgi/content/full/324/7337/0/d. Patient Information Forum. (2007). Evaluating the quality of health information. Accessed on December 27, 2007 at PIF website: http://www.pifonline.org.uk/index.asp?o=1107. Patient UK. (2004). Chemotherapy with Cytotoxic drugs. Accessed on December 27, 2007 at Patient UK website: http://www.patient.co.uk/showdoc/27000559/ Read More