Multiple myeloma (MM) accounts for about 14% of all newly diagnosed haematological cancers, and it is estimated that its incidence will rise considerably due to an increasingly aging population in the Western world. Treatment of myeloma has changed in the past decade leading to a possibility of reaching a complete remission (CR) of nearly 50%, a median survival of 5 years, and a 10-year survival rate of 20%. Most of the recent treatment strategies do not require hospitalization so that many patients spend a considerable amount of time at home managing all the difficulties related to the therapies often with little support. Even though this physically disabling and deteriorating condition has a great impact on patients, little is known about their (unmet) needs and quality of life (QOL).
The purpose of this qualitative study was to identify dominant themes, links between domains of QoL from the patients' perspective and how these domains influence their expectations regarding QoL in patients with multiple myeloma, trying to identify possible interventional instruments. The sample consisted of 34 patients treated in 9 Italian Centres: 16 women and 18 men; median age 65 years (range 35–77); with a first diagnosis of MM between 1982 and 2009 (median time since diagnosis 3 years ). From July 2009 to Nov 2009, 34 indepth interviews (60 minutes each) were conducted by clinical psychologists. Data from individual interviews were audiotaped and transcribed and then analysed with the “Text Emotional Analysis”, a methodology based on clinical-psychological models and on statistical multivariate analysis techniques.
The analysis, conducted with the statistical software Alceste (Analyse des Léxèmes Cooccurrents dans les Enoncés Simples d'un Texte), highlighted 4 word clusters (Table 1: the words that characterize the clusters are reported in the table with a decreasing χ2 value that indicates the importance of the single words in the belonging clusters): Cluster 1 “The relationship with family and friends”; Cluster 2 “The relationship with pain and drugs”; Cluster 3 “The elaboration of the experience”; Cluster 4 “The relationship with physicians and the hospital”.
The position of the different clusters in the factorial space can also originate a second kind of analysis that is based on the relation between clusters (Table 2: values of the relationships between Clusters and Factors). On the first factor, cluster 4 and cluster 1 oppose themselves. This is the factor of relationships: the new relationships (the physician and the hospital) oppose to the old relationships (the family); the socialization with the new environment (positively connoted: attention, professionalism, commitment, ability) that is in opposition with the isolation and the shelter of the family (children, family, wife, mother, home). On the second factor, Cluster 2 and Cluster 1 oppose themselves. This is the factor that highlights the complexity of the experience towards the body due to the disease and the drugs (pain, effects, improvements, results, care, discomfort). The third factor is characterized by cluster 3 and expresses coping strategies towards ones condition (shame, companion, emotions, to get accustomed to).
This study shows that one of the most important aspects for patients affected by MM is the creation/reorganization of all relationships. The patient's psychological dimension that defines the relationship with the haematologist is driven by an “all-absorbing” taking in charge of the physician fantasy, that often clashes with the hospital practicality. The relationship with other patients, with others that live the same experience, so called “companion” (from latin cum panis, who eats the same bread). Moving on from the results of this research, in the period of May 2010-July 2010, a first intervention was performed. In 5 pilot centres seminars were conducted by clinical psychologists in order to let patients interact with their physicians in a dedicated “space” different from a waiting room or an informative seminar. More than 100 people participated between patients, family members, physicians and nurses. With the findings of this research a questionnaire will be designed and administered to a wider multiple myeloma patient sample.
Pelagalli:Celgene: Research Funding. Boccadoro:Celgene, Janssen-Cilag: Consultancy, scientific advisory board, research support. Petrucci:Janssen-Cilag, Celgene: Honoraria.
Asterisk with author names denotes non-ASH members.