1. CoRPS Center of Research on Psychology in Somatic diseases Multiple myeloma survivors experience a low quality of life and many disease-specific complaints: results from a prospective population-based study APOS Miami 23-25 Feb 2012 I, or an immediate family member, including partner, have no financial relationships relevant to the content of this CME activity. Floortje Mols, PhD - Tilburg University - Comprehensive Cancer Center South The Netherlands

2. CoRPS Introduction: Multiple Myeloma (MM) MM  second most common hematological malignancy Survival of MM has improved –Mainly among relatively younger patients (<60 years). Only few studies have investigated the consequences of MM on short and long-term survivors –However, many of those probably face continuing problems with respect to health related quality of life (HRQOL) and disease-specific complaints.

3. CoRPS Introduction: Health related quality of life (HRQL) Most HRQOL studies focus on: –the influence of MM treatment(s) on HRQOL –compare MM patients with the general population –describe HRQOL among short-term (<5 years) survivors Most studies on HRQOL among MM patients: –are small (N<100 patients) –are cross-sectional –use a clinic-based sampling frame –lack information on disease-specific complaints

4. CoRPS Aim of present study The aims of this prospective population-based study were to; –compare HRQOL of MM patients with the general population of the same age and sex. –assess HRQOL and disease-specific complaints longitudinally following treatment within MM patients.

5. CoRPS Methods: Participants All patient diagnosed with MM between 1999-2009 and alive in 2009 were selected from the population-based Eindhoven Cancer Registry. They received our baseline questionnaire in May 2009. In May 2010, they received the 1-year follow-up questionnaire. –Also, newly diagnosed MM patients received the baseline questionnaire. Approval was obtained by a Medical Ethics Committee.

6. CoRPS Methods: Data collection Medical specialists from 16 hospital locations were involved and they send an invitation letter and a questionnaire to our selection of MM survivors. Questionnaires; –EORTC QLQ-C30 and EORTC QLQ-MY20. Questionnaires were linked with disease history as registered by the cancer registry; –Stage, grade, treatment, date of diagnosis, date of birth etc.

7. CoRPS Methods: Normative population Normative population: A representative panel of the Dutch-speaking population in the Netherlands. –In total, 1743 cancer-free panel members of  18 years completed the EORTC QLQ-C30 1. We matched this sample on age and sex with our MM sample; –This resulted in a final normative sample of 500 participants. 1 L.V. van de Poll-Franse, F. Mols, et al., European journal of cancer, 2011; 47(5): 667-675.

8. CoRPS Results: Response Response: –Baseline questionnaire was completed by 156 out of 210 eligible patients (74% response rate). –One year follow-up was completed by 80 out of 156 eligible patients (59% response rate). Differences between respondents, non-respondents and unverifiable addresses; –Non-respondents were diagnosed more recently. –Respondents were more often treated with chemotherapy only.

9. CoRPS Results: Participant characteristics At baseline –Median age was 66, 55% male –Most patients treated with chemotherapy only (39%) or active surveillance (30%) –28% had no comorbid conditions, 45% reported ≥2 –77% married or living with a partner –63% medium educational level –84% not employed/retired No differences between those who completed 1 or 2 questionnaires.

10. CoRPS Results: Short- vs. long-term survivors No differences on the EORTC-QLQ-C30 subscales between short- and long-term survivors at baseline. –Short-term survivors  <5 years after diagnosis –Long-term survivors  ≥5 years after diagnosis

11. CoRPS SF-36

12. CoRPS QOL-CS – AS vs. RT

13. CoRPS Results: Disease-specific complaints Five symptoms that bothered patients the most; –tingling hands or feet (32%) –back pain (28%) –bone aches or pain (26%) –pain in arm or shoulder (19%) –feeling drowsy (18%). Also, 37% worried about their future health, 34% had been thinking about their illness, and 21% had worried about dying ‘Very much’ or ‘Quite a bit’ in the past week.

14. CoRPS Results: Baseline vs. 1-year follow-up (n=80) Between 50 and 90% of patients reported a deterioration on all functioning and symptom scales of the EORTC QLQ-C30. Significant differences for the subscales: –QoL  (mean 68 vs. 55, p<0.001; 74% deteriorated) –Fatigue  (33 vs. 39, p<0.05; 50% deteriorated) –Nausea/vomiting  (6 vs. 13, p<0.05; 71% deteriorated) –Pain  (33 vs. 43, p<0.05; 59% deteriorated) –Dyspnea  (17 vs. 33, p<0.001; 66% deteriorated) EORTC QLQ-MY20: no significant deteriorations.

15. CoRPS Conclusions MM patients report a statistically significant and clinically relevant lower HRQOL compared to an age- and sex- matched normative population –up till 11 years after diagnosis! HRQOL of MM patients decreased during follow-up –fatigue, pain, dyspnea, nausea and vomiting increased. Most often reported symptoms –Tingling hands or feet, back pain, bone aches or pain, pain in arm or shoulder, and feeling drowsy.

16. CoRPS Clinical implications / Future studies Clinical implications: –Health care providers should pay specific attention to these symptoms and low HRQOL and refer their patients to specific cancer survivorship care programs if possible and available. Future studies: –should focus on the possible mechanisms that can predict low HRQOL and high symptom burden in MM patients, and should investigate the optimal way to alleviate these.

17. CoRPS Take home message MM patients experience a very high symptom burden and low HRQOL!

18. CoRPS Thank you for your attention! Floortje Mols, Simone Oerlemans, Allert H. Vos, Ad Koster, Silvia Verelst, Pieter Sonneveld, Lonneke V. van de Poll-Franse. Health related quality of life and disease-specific complaints among multiple myeloma patients up to 10 years after diagnosis: results from a prospective population-based study using the PROFILES registry. Submitted for publication Email: F.Mols@TilburgUniversity.edu Website: http://www.tilburguniversity.nl/corps