Mantle cell lymphoma (MCL) is a rare peripheral B-cell lymphoma characterised by eventual relapse and progression towards a more aggressive disease biology. With the introduction of rituximab-and cytarabine-based immunochemotherapy regimens, the prognosis of the disease has changed dramatically over the last two decades. To assess the real-world survival of patients with MCL, we used a population-based cohort of 564 patients with MCL who were diagnosed and treated between 2000 and 2020. Patient data were collected from seven Finnish treatment centres and one Spanish treatment centre. For the entire patient population, we report a 2-year overall survival (OS) rate of 77%, a 5-year OS of 58%, and a 10-year OS of 32%. The estimated median OS was 80 months after diagnosis. MCL is associated with increased mortality across the entire patient population. Additionally, we assessed the survival of patients after MCL relapse with the aim of establishing a cut-off point of prognostic significance. Based on our statistical analysis of survival after the first relapse, disease progression within 24 months of the initial diagnosis should be considered as a strong indicator of poor prognosis.
Background
The European Organisation for Research and Treatment of Cancer (EORTC) has developed the Spiritual Well-being Questionnaire (EORTC QLQ-SWB32), a measure of spiritual well-being validated with people receiving palliative care for cancer, although its usefulness is not restricted to that population. We aimed to translate and validate this tool in Finnish and to study the relationship between spiritual well-being (SWB) and quality of life (QOL).
Methods
A Finnish translation was produced according to the guidelines of EORTC and included forward- and back-translations. Face, content, construct and convergence/divergence validity and reliability were studied in a prospective manner. QOL was assessed with EORTC QLQ-C30 and 15D questionnaires.
Sixteen individuals participated in the pilot testing. 101 cancer patients drawn from oncology units, and 89 patients with other chronic diseases drawn from religious communities in different parts of the country participated in the validation stage. Retest was obtained from 16 individuals (8 cancer and 8 non-cancer patients). Inclusion criteria included patients with either a well-defined palliative care plan, or who would benefit from palliative care, as well as the capacity to understand and communicate in Finnish.
Results
The translation appeared understandable and acceptable. Factorial analysis identified four scoring scales with high Cronbach alfa values: Relationship with Self (0.73), Relationship with Others (0.84), Relationship with Something Greater (0.82), Existential (0.81), and, additionally, a scale on Relationship with God (0.85). There was a significant correlation between SWB and QOL in all participants.
Conclusions
The Finnish translation of EORTC QLQ-SWB32 is a valid and reliable measure both for research and clinical practice. SWB is correlated with QOL in cancer and non-cancer patients undergoing palliative care or who are eligible for it.
Numerous articles in top IS journals note as a limitation and lack of generalizability that their findings are specific to a certain type of technology, culture, and so on. We argue that this generalizability concern is about limited scope (e.g., explanatory breadth). The IS literature notes this preference for generalizability as a characteristic of good science and it is sometimes confused with statistical generalizability We argue that such generalizability can be in conflict with explanation or prediction accuracy. An increase in scope (e.g., increasing explanatory breadth) can decrease explanation or prediction accuracy. Thus, in sciences such as cancer research, where explanation and prediction accuracy are highly valued, the cancer accounts (generally speaking) have become increasingly narrower (and less generalizable). IS thinking has not yet benefitted from these considerations. Whether generalizability is valued should be linked with the research aims. If the aim is practical applicability through explanation or prediction accuracy, then "limited" generalizability could be a strength rather than a weakness. 1 "Published Research that Applies the Statistical, Sampling-Based Conception of Generalizability to Nonstatistical, Nonsampling Research" [4 p. 223]. Also: "researchers should not give up claims to generality on the basis of…small n," and they should have a "right to generalize and claim generality" [1 p. 61, 63].
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