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Title: Evaluation of a patient educational booklet for the management of peripheral neuropathy in multiple myeloma
Author: Clarke, Helen Louise
ISNI:       0000 0004 2724 6182
Awarding Body: University of the West of England, Bristol
Current Institution: University of the West of England, Bristol
Date of Award: 2011
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TITLE: Randomised controlled trial of the efficacy of a patient educational booklet for the management of peripheral neuropathy in multiple myeloma patients. BACKGROUND: As survival improves in multiple myeloma (MM) patients, quality of life and symptom management are becoming paramount. Peripheral neuropathy (PN) is a debilitating side effect of MM and its treatment but can be managed by monitoring symptoms and modifying medication. AIMS: The primary aim of the project was to assess the impact of an educational booklet on knowledge of PN in MM patients. The secondary aim was to assess whether improved knowledge increased the reporting of PN with their HCP leading to better management of PN. METHODS: MM patients diagnosed for at least 1-year were randomised to three treatment groups; group 1 received no information on PN, group 2 & 3 received a PN educational booklet. Questionnaires were completed at 0, 4, 8 and 12-months. Group 1 and 2 completed the questionnaires by themselves whilst group 3 complete their questionnaires via a telephone interview. As group 3 had a high dropout rate during the study period, results from group 2 and 3 participants were combined for the purpose of the study analyses. No significant differences were observed in baseline data between study groups 2 and 3, which enabled the combining of these groups for analysis. RESULTS: Fifty-eight participants were enrolled (19 group 1, 39 group 2 & 3). 63% of participants were male, 67% aged >60 years and 51 % received ~3 prior lines of therapy with at least a third on active treatment at any time point throughout the study. During the course of the study, only 11 % of participants had a resolution of their PN. However, the percentage of participants discussing their PN symptoms at hospital visits significantly declined (p=0.006) over the course of the study, with 96% discussing at baseline vs. 61 % at 12 months. During the course of the study, a significantly higher proportion of participants in group 1 consistently found it a lot more or somewhat more difficult to be optimistic or hopeful about their prognosis and survival when they had PN compared to groups 2 & 3. At baseline, 35% of participants had nothing done to their MM treatment to manage their PN, which increased to 75% at 12-months despite a high number of participants experiencing PN symptoms. In addition, 46% of participants did not receive any treatment recommendations for supplementary medications to manage their PN. The educational booklet was reported as good/very good, easy to understand by virtually all the participants. The most useful section was treatment of PN. Sixty percent of participants think a booklet on PN should be available at diagnosis or at the beginning of their MM treatment with 93% of participants stating that it should be provided by their doctor or nurse. Level of knowledge of PN symptoms, management and reversibility did not significantly change in either of the treatment groups. However, participants in groups 2 & 3 demonstrated a positive change in their beliefs of the management of PN indicating that the booklet provided may have had a positive (if small) impact on knowledge. Conversely, group 1 participants reported a small decline in their beliefs on the management of PN over the course of the study. SUMMARY/CONCLUSIONS: The educational booklet had no significant impact on knowledge however; there was a positive change in beliefs of the management and reversibility of PN in the participants who received the booklet. The study results indicate that overall, PN in MM patients is not currently being adequately managed through modification of the MM therapy and/or additional treatment recommendations. Future work needs to be conducted to evaluate methods to improve the communication between healthcare professionals and MM patients to ensure consistently high levels of discussion on PN take place pre, during and post MM treatment to help drive an improvement in the management of PN.
Supervisor: Not available Sponsor: Not available
Qualification Name: Thesis (Ph.D.) Qualification Level: Doctoral
EThOS ID:  DOI: Not available