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Patient communication and self-management
|(NCCN, SIGN)SM1. For all patients with pain, provide education about cancer-related pain and its management.|
| SM2. Patients with pain should be provided with verbal and written information on pain and its management, including the following:
• pain causes
• common experiences of cancer pain (e.g. onset, timing)
• effective treatments (including medicines and non-pharmacological management strategies)
• effect of medicines including breakthrough analgesia (e.g. onset and duration of effect; when to take them)
• side-effects of medicines and how to prevent or manage them
• any safety concerns (e.g. mixing with alcohol, driving)
• ways to ensure patients have adequate access and supply to prescribed opioids
• how to work with health professionals to achieve the best pain control possible (e.g. the importance of reporting rather than concealing pain, side-effects and other concerns about medication)
• common attitudes and beliefs that may prevent people with cancer receiving effective pain control (e.g. fears that opioids are addictive and used only at the end of life, and that patients will develop tolerance over time requiring dose escalation)• when to seek help (e.g. if vomiting and unable to keep down fluids for one day, bowels not open 3 days, new pain, change in pain or pain not relieved by medication, difficulty arousing the patient from sleep easily during the daytime, confusion, difficulty accessing the medications).
Systematic review by Koller et al (2012): Koller A, Miaskowski C, De Geest S, Opitz O, Spichiger E. A systematic evaluation of content, structure, and efficacy of interventions to improve patients' self-management of cancer pain. J Pain Symptom Manage. 2012 Aug;44(2):264-84.
| SM3. Include the person’s family, carers and significant others in education about pain and its management, if appropriate.
Carers are frequently involved in decision-making (e.g. to start and adhere to opioids) and management
Educational resources for patients and families
- Includes information, resources (e.g. helplines), a pain measurement scale and a prompt list of questions to ask medical staff.
- Use of this resource has been shown to reduce pain by a randomised controlled trial (Lovell MR, Forder P, Stockler M, Butow PN, Briganti E, Chye R, et al. A randomised controlled trial of a standardised educational intervention for patients with cancer pain. Journal of Pain and Symptom Management. 2010;40:49-59. [Available at: www.ncbi.nlm.nih.gov/pubmed/20619212])
Managing pain with strong opioids in people with advanced, progressive disease (NICE)
- A booklet for people using opioid treatment is available from the UK National Institute of Health and Care Excellence (NICE) as part of their guideline on opioids via http://guidance.nice.org.uk/CG140/PublicInfo/doc/English
- NICE also provide a training resource for health professionals on opioid prescribing in palliative care via
Safe storage and disposal of pain medication
- Advice for patients on safe storage and disposal of medication is available online and in printed fact-sheets from the American Society of Clinical Oncology (ASCO).
Self-management resources for patients and families
The following self-management resources have been developed by the Guideline Working Group on the basis of systematic reviews by itself and others. (Luckett et al 2013, Marie N et al 2013, Bennett MI et al 2009, Cummings GG et al 2011, Sheinfeld Gorin S et al 2012, Koller A et al 2012)
• A pain management plan template for the patient to complete with his/her medical team and then keep as a record that can be given to other health professionals as required (e.g. in the Emergency Department).
• A brief tool designed to inform discussions between patients and medical teams aimed at developing a shared understanding of the level and type of support needed and how this may change over time.
The Cancer Council NSW provides a pain diary to help patients report their pain in a way optimal to its management.
We are currently seeking advice from patients and families on how these resources might be made more useful and user-friendly in future versions. Please use the comment function below to submit suggestions.
Bennett MI, Bagnall AM, José Closs S. How effective are patient-based educational interventions in the management of cancer pain? Systematic review and meta-analysis Pain 2009 Jun;143(3):192-9 [Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/19285376].
Cummings GG, Olivo SA, Biondo PD, Stiles CR, Yurtseven O, Fainsinger RL, et al. Effectiveness of knowledge translation interventions to improve cancer pain management J Pain Symptom Manage 2011 May;41(5):915-39 [Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/21398088].
Luckett T, Davidson PM, Green A, Boyle F, Stubbs J, Lovell M. Assessment and management of adult cancer pain: a systematic review and synthesis of recent qualitative studies aimed at developing insights for managing barriers and optimizing facilitators within a comprehensive framework of patient care J Pain Symptom Manage 2013 Aug;46(2):229-53 [Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/23159681].
Koller A, Miaskowski C, De Geest S, Opitz O, Spichiger E. A systematic evaluation of content, structure, and efficacy of interventions to improve patients' self-management of cancer pain J Pain Symptom Manage 2012 Aug;44(2):264-84 [Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/22871509].
Marie N, Luckett T, Davidson PM, Lovell M, Lal S. Optimal patient education for cancer pain: a systematic review and theory-based meta-analysis Support Care Cancer 2013 Dec;21(12):3529-37 [Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/24085650].
National Comprehensive Cancer Network. NCCN clinical practice guidelines in oncology. Adult cancer pain. Version 2.2015: NCCN; 2015. Available from: http://www.nccn.org
Scottish Intercollegiate Guidelines Network. Control of pain in adults with cancer. A national clinical guideline [Version amended 18 July 2011] Edinburgh: SIGN; 2008. Available from: http://www.sign.ac.uk/pdf/SIGN106.pdf.
Sheinfeld Gorin S, Krebs P, Badr H, Janke EA, Jim HS, Spring B, et al. Meta-analysis of psychosocial interventions to reduce pain in patients with cancer J Clin Oncol 2012 Feb 10;30(5):539-47 [Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/22253460].