Symptom Burden in Relapsed Myeloma Ms. Orlaith Cormican

Symptom Burden in Relapsed Myeloma Ms. Orlaith Cormican Oncology Research Nurse Galway University Hospital Myeloma patients have the highest symptom burden and problems in comparison to other haematological malignancies

(Molassiotis et al., 2011, Johnsen et al., 2009). 3 Take Home Messages Symptom Management remains complex due to the array of treatments given. Self Management may be beneficial in helping patients diagnosed long term to cope and manage with the physical and psychological aspects of their disease. Numerous drug interventions for treatment of these symptoms have proven ineffective,

we now need to consider a combined approach. Background The availability of further treatment has resulted in a longer life expectancy for many patients and myeloma is now viewed as a chronic incurable condition. The achievement of symptom reduction and disease control needs to be effectively balanced for those on long term treatment

in order to improve quality of life. Why Self Management Matters? SM interventions enable and empower patients and families to care for themselves across the cancer care continuum in the way they prefer. What we set out to do? Our interest is improving the quality of

life of patients with an incurable condition. Multiple Myeloma is being regarded as a chronic incurable condition. It is hoped by undertaking this project we could potentially improve patient outcome. What we decided to do? Pilot Programm

e Focus Groups App/Tool Design Analysis Modified

Nominal Group Technique Findings Ongoing Difficult Symptoms

Peripheral Neuropathy Fatigue Infection Risk Steroid Induced Side Effects Getting on with it The majority of patients want to live life to the full and keep going.

Adaptation techniques were often utilised and participants were grateful for the activities that they could still undertake. Patients with a longer diagnosis tended to have less fear, worry and discouragement about their health and life and tended to just get on with it.

Findings Self Intervention: Own Supportive Care Strategies Initiatives used included keeping records of symptoms, paraprotein levels and bloods results at each clinic visit to monitor their myeloma. Accessing alternative

therapies was not uncommon when support networks within the hospital or the myeloma care team were not meeting patients needs. Challenges in attempts to manage symptoms Patients often felt they have to push for interventions or

seek alternatives due to lack of continuity in their care and a lack of emphasis on the chronic problems they experienced. In addition, participants (carers and patients) reported discrepancies in the information they received from different health care professionals.

Common Set of Needs Among Patients With Chronic Illness Effective clinical, behavioural, and supportive treatment Information and support to help patients become competent managers of their own health and illness Systematic follow-up and monitoring tailored to clinical severity, including more intensive management of high-need patients

Coordination of care across settings and professionals (Wagner et al., 1998) Disease Related Symptoms versus treatment related symptoms Disease Related Treatment Related Hypercalcemia and Bone Disease

Renal Insufficiency Anaemia Infection Myelosuppression Venous Thrombembolic Events Peripheral Neuropathy GI Toxicity Cardiac Toxicity

The Patient and Carer Experience In Ireland Steroid Induced Side Effects Anxiety Depression Fatigue Peripheral Neuropathy Infection Risk

Cytopenia Pain Dental Issues Muscle Cramps Decreased Mobility

GI Issues How do clinicians rank them? 1. 2. 3. 4. 5. Pain Fatigue

Peripheral Neuropathy Infection Risk Steroid Induced Side Effects Peripheral Neuropathy ... You know hopefully its going to get better. You know the type of thing and then hopefully you get kind of immune to it... (FG1, Participant 1). Fatigue

But yeah the fatigue is, its unnatural really. (FG 3, Participant 2). Infection Risk ... It was explained to me that if [referring to temperature] it gets above a certain point, you come to the hospital. Thats, or you ring the hospital I mean, get up there. (FG 1, Participant 3). And several times, youve had pneumonia and her temperatures just being like 36 point something. But thats

high for Mum. So because I was recording, we were able to say, I was able to say, well hold on a minute here. This isnt normal; we need to go to the hospital. And both times youve had pneumonia. (FG 2, Carer, 3 (daughter)). Steroid Induced Side Effects its the most awful feeling, it really is, you know, you want to eat and youre wanting and youre not enjoying it, but at the same time you want it. (FG, 3, Participant 2). Youre on the roof one minute and youre on

the floor the next. Desperate. (FG 1, Participant 2). Getting on with it Yeah, I dont see any other way. I mean theres no magic wand, if anybody has, that you can wave and say here thats that gone. (FG 4, Participant 2). I know I am not the patient but I have lived

this as well. (FG 2, Carer 3 (daughter)). Self Interventions If you hit luck with somebody in a chemist, or somewhere, or talking to someone that tells you something. Thats when you really get information. (FG 2, Participant 1). I know you feel that somebody else [has that symptom] that youre not alone. (FG 3,

Participant 2). Challenges in attempts to symptom manage That sometimes the information that youre given in one place, is completely different to the other. And if you havent, if you didnt have anybody with you to ask questions. Because sometimes I found that you were focusing

on different things.(FG 2, Carer 3 Yea come and live with me like, yea to understand (FG 2, Participant, 3). The Spoon Theory Whats Next....APP The final part of our research is the development of a symptom management

tool developed for patients home utilization when experiencing symptoms or side effects. Currently the APP is in design: Expected to be completed in December 2017. Plan to pilot the APP early next year; if anyone is interested in partaking please contact me. Questions?

Acknowledgements We would like to thanks the patients who participated in our focus groups. None of this would have been possible without the input from Miss Teresa Meenaghan, Miss Ger Walpole, Miss Della Hackett and Miss Mary Kelly. The HRB: Cancer Nursing Research Grant 2016 who provided funding. References

Jones, M. C., S. MacGillivray, T. Kroll, A. R. Zohoor, and J. Connaghan, (2011) "A thematic analysis of the conceptualisation of self-care, selfmanagement and self-management support in the long-term conditions management literature." Journal of Nursing & Healthcare of Chronic Illnesses, 3, pp. 174-185. Kennedy, A., A. Rogers, R. Bowen, V. Lee, T. Blakeman, C. Gardner, R. Morris, J. Protheroe, and C. Chew-Graham (2014) "Implementing, embedding and integrating self-management support tools for people with long-term conditions in primary care nursing: A qualitative study." International Journal of Nursing Studies, 51, pp. 1103-1113. Koch, T., P. Jenkin, and D. Kralik (2004) "Chronic illness self-management: locating the 'self'." Journal of Advanced Nursing, 48, pp. 484-492. Lorig, K., Sobel, D.S., Stewart, A.L., Brown, B.W., Bandura, A., Ritter, P. et al. (1999) "Evidence suggesting that a chronic disease self-management program can improve health status while reducing hospitalization a randomized trial." Medical Care, 37(1), pp.5-14. Mayor V (2006) Long term conditions. 3: Being an expert patient. Br J Community Nurs 11(2): 5963 Molassiotis, A., Wilson, B., Blair, S., Howe, T and Cavet, J. (2011) Unmet supportive care needs, psychological well-being and quality of life

in patients living with multiple myeloma and their partners. Psycho-Oncology; 20: pp. 88-97. Ryhnen, A. M., Rankinen, S., Siekkinen, M., Saarinen, M., Korvenranta, H. and Leino-Kilpi, H. (2013) 'The impact of an empowering Internet-based Breast Cancer Patient Pathway program on breast cancer patients' clinical outcomes: a randomised controlled trial', Journal of Clinical Nursing, 22, (7/8), pp. 1016-1025. Johnsen, T,A., Tholstrup, D., Petersen, A, M., Pedersen,L and Groenvold, M. (2009) Health Related Quality of Life in a nationally representative sample of haematological patients. European Journal of Haematology; 83: pp. 139-148 Wagner (1998) "Chronic Disease Management: what will it take to improve care Chronic Illness?" Eff Clin Pract, 1, pp. 2-4.

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